Monday, September 20, 2010

Amitriptyline (Elavil) Withdrawal

It's been a few months since I've been weaning off the Amitriptyline that I've been taking for a blanket treatment towards my PCS. The theory is that in low doses it has been shown to help with 3 symptoms: sleep dysfunction, headache, and pain.

When I was first diagnosed with the PCS by Dr. Kang from Dent Neurology, he started me on 10 mg of Amitriptyline/night. He first gave it to me because I wasn't sleeping at night and when I did sleep I had very vivid and disturbing dreams.

When it was discovered that I had herniated discs in my neck, the Amitriptyline was gradually increased to 75 mg/night. When my neck became better, I wanted to try to reduce the amount of medication I was taking and eventually try to see if I could come off the Amitriptyline altogether.

I decreased to 50 mg the first drop, and then dropped in 10 mg increments every two weeks. Every drop was very difficult for me. I've had every side effect for every medication I've been on, and it seems that I am also sensitive to changes in medication.

The symptoms are always allergy/cold type symptoms with a low grade fever and sleep disturbance. It also feels as if I'm drunk. There is dizziness, vertigo, radical temperature changes, increased light/sound sensitivity, itchy/watery eyes, itchy/runny nose, nausea, headache. It feels really crappy, and scared me the first few times.

I just did my final drop 4 days ago. This withdrawal is the worst so far. I feel as if something is seriously wrong with me. It's scary and very difficult. I suppose there are psychological symptoms like paranoia with it too. It's not fun at all, and it makes me want to get right back on the medication, even though I'm just trying to get off it.

I hope it is not all for nothing. There could be benefits from the Amitriptyline that I'm not seeing, because I've been on it for 16 months.

I know there are negative side effects that come along with it. My fatigue has been the worst symptom of mine lately and the doctors and I discussed this being related to the Amitriptyline. If getting rid of it can help my fatigue go away or be reduced, I might have a shot at being able to stand more activity and going further through the research study.

I see Dr. Leddy in a week, and I'm anxious to get past this horrible withdrawal. I know how scary it's been stepping down off of this and I hope this post can be helpful to others going through the same thing.

I haven't seen much research online about it, other than it being associated with mental disorders in much higher dosages. I know that you are not supposed to stop it altogether, and have to step down very gradually. I didn't think that I would be so affected by the withdrawal stepping down in such small amounts.

118 comments:

  1. Yesterday the dripping nose and itchy/watery eyes continued in full force. It's slowing down a little bit today, but it is still pretty bad.

    My stomach is having issues today from the withdrawal, and I hope it slows down. The drunk feeling has subsided almost all the way, which makes feeling miserable a little easier.

    I welcome any comments. Has anyone gone through this withdrawal before? How long did it last? What was the schedule of your symptoms?

    Thanks!

    ReplyDelete
  2. Hi Kate:

    I was recently started on Elavil recently for sleep problems due to back pain and was not informed that there could be withdrawal problems if stopped. Since reading your comments, I have become concerned and intend to take this up with the Doctor. I think I would rather have the sleep problems than become addicted to a drug that so far hasn't seemed to help. I am at the present time taking 20mg nightly and have taken it for a month. Thanks for posting your concerns as it will help others like me. I hope your symptoms will subside soon.

    "TNT Tommy"

    ReplyDelete
  3. Hi Tommy,

    I'm sorry you are having back pain and not sleeping. The Amitriptyline works great for sleep disorders. Only 10mg was putting me to sleep. I don't know that I wouldn't have taken it in the first place if I had known about the withdrawal.

    I think all sleep meds have a tendency to be addictive in their own ways, and it would be difficult to come off any of them. You have to talk to your doctor and make sure the benefits outweigh the costs.

    I have a very conservative mindset in regards to medication. I don't want to take anything I don't have to take. This will be my last daily medication, and I'm excited about that.

    I am sleeping great though, now. I fell asleep easily last night and woke up when I was supposed to without waking up through the night! It was a fabulous feeling!

    Good luck to you. I hope that you can find some answers and that your fears will be relieved.

    There is hope in Christ!

    ReplyDelete
  4. Hi Kate,

    I just found your blog by accident, but I sure am glad. I've been on Elavil since 1993 at 100-150. mg per day. I moved and ran out but the new doctor would not give me a new Rx. So the withdrawal then (1995) was mainly nausea and sweating. I went back on it eventually but if I knew then what I know now I never would have. Now I have weaned off it, and this first week I always felt very angry and snappy at every little thing. That has decreased. There was also the typical light headiness, which is caused by resultant low blood pressure, and feeling drunk. That has also decreased. But the drippy nose and headache has not decreased and I have battling non-allergic runny nose for 6 years, figuring it was the Elavil (and or Klonopin), but never was it this bad. I'm very scared because I cannot go on living like this and going back on it is not an option. After this I still got the Klonopin withdrawal, which I hear is worse than heroin.

    Thank You,
    Roger (flstfrider)

    ReplyDelete
  5. Hey Roger,

    I'm so sorry you are having so much trouble getting off your meds. I couldn't believe how horrible it was for me. I had one horrible last hurrah of sick from November 6 - November 14, and then it was over. I still get a slight runny nose in the morning and regular allergies, but I think the withdrawal is done.

    I'm lucky that the most I was ever on was 75mg. I can't imagine how hard it must be for you to get it all out of your system.

    Like you, I couldn't find any information online about this withdrawal. I don't know if it's not as common or if there just isn't much about it, but I felt so alone going through it.

    My doctor said that one of the effects of withdrawal is feeling alone and also feeling like you are going crazy or something. He said it's a nasty drug withdrawal, but that I'm also very sensitive to medication so it might be worse for people like me.

    Again, I am so sorry Roger. If there was something I could do to take it away I would. I wouldn't wish this on anyone. I remember there were days where I would literally go through 5-6 boxes of tissues.

    If you have any questions that I can answer, I'd be happy to help in any way I can.

    ReplyDelete
  6. Hi concussionkate (Kate),

    Thank you so much for your reply. Just knowing there is someone else out there with the same problem and who recovered is such a tremendous lift off my shoulder and encouragement! But I am sorry that you had to go through it. After the Elavil I still have Klonopin to deal with. Try not to use Advil or other NSAIDS as they're opioids and also cause runny nose and withdrawal too. I have a link with an interesting medical study. I'll find it and post it here.

    I've been battling the runny nose for nearly 6 years, and I'm taking allergy shots too because the skin test showed I had minor allergies. But there was no help at all from them. I too litterally went through 4 to 6 boxes of tissues a day too and would buy them in bulk at stores like Costco, and used so much antihistamine drugs like Benidryl.

    I noticed that you mention our Lord several times in your blog. I believe this is a trial that the Lord let us go through to help us grow as stronger people and to be able to help others. I thank Him so much for that and just when I begun to actually give up on living, he let me find your blog.

    Thank you and others so much and praise our God!
    Roger :-)

    Thank

    ReplyDelete
  7. Hi Kate,

    I found the medical study that I came upon in a Google search on Elavil Withdrawal. Its about non-allergic runny nose, or Non- Allergic Rhinitis (NAR). please let me know if this link does not work. I was using Safari on my iPhone when I found it, so I don't know how it will work with other browsers. Here it is:
    http://www2.utmb.edu/otoref/grnds/nonallergic-rhinitis-091216/nonallegic-rhinitis-091216.doc

    Thanks again so much,
    Roger

    ReplyDelete
  8. Hi Kate,

    I forgot to ask you and/or others here a couple questions:

    Approximately how many weeks did your symptoms last, especially physical symptoms such as the runny nose? That one is most bothersome to me, before the watery itchy eyes and headaches. Were they worse at night?

    Also, then and now, did you take any kind of medicine, herb, food, vitamin, homeopathic meds etc. for the runny nose and/or watery eyes? If so, which has worked the best so that you could at least function your basic life such as work
    and home activities/chores? My watery eyes are worse when laying down, but the runny nose is worse when I'm up. My 2002 sinus surgery does not help, if it part of the cause. I didn't develop these symptoms until 2004 which is odd since I started Elavil in 1993. However I'm also on a high dose of Klonopin and many others that I quit already.

    Anymore information is greatly appreciated, as well as your time in reading and replying. Thank you so much,
    Roger

    ReplyDelete
  9. Roger, Thank you so much for adding so much great information to this section here! I'm so happy that you are able to help me inform others and lift others up. Most people with PCS are prescribed Elavil as a standard method of treatment for sleep, pain, and headache. We are put on a low dose: 10-75mg and increased as necessary.

    I was on as much as 75, but started with only 10. I think I got more and more used to it and needed more for the same effect. It was making my quality of life worse with the fatigue and heaviness it made me feel. With my PCS, I also have a herniated disk in my neck. My physical therapy helped relieve my neck pain and I decided it was time to come off the Amitriptyline (Elavil).

    I went off it cold turkey and after 2 days I felt like I must be dying. It was a horrible couple of days. My husband suggested that the Elavil was tough to come off and after doing some research I realized it was. I got back on it and talked to my doctor about coming off it. They suggested I reduce my dose by 10 mg every 2 weeks. I took me a while, but once I was done, I thought it would be over.

    Although I didn't feel the heaviness that went along with being on the Elavil every day, I still felt the withdrawal. I also felt it every time I reduced dosage. It took 9 weeks after I was off the Elavil to stop feeling the withdrawal symptoms. They would go away for a few days and then come back, or it would be constant for a week – 2 weeks. It felt like I had a horrible cold all the time.

    I had a final 2 weeks of the withdrawal that ended in the last part of November, and I haven't had any trouble since!


    So, I am so happy that you have a relationship with the King of Kings! He is the only one who can bring us out of the pit. He is the only one who can save us. I have come to know that this is a light and momentary trouble compared to eternity. It is horrible and hard and sucks a lot, but I am being held in the hands of the Great and Holy one. I may not be better until I am with Him, but I know that at least when that happens I will be brand new.

    I think you are right about being put through trials. Read through the book of James and you will see all the ways that God shapes us. I have seen great improvements in my life and my marriage through the last 18 months I have been sick. It's been much longer for you and I'm so sorry for that.

    While I was going through the withdrawal, I was told not to take any over the counter or herbal remedies to help with the symptoms. My doctor told me that there was a similar ingredient to Benedryl in the Elavil and when you are taken off of it, your body has to relearn how to produce that natural antihistamine. He said to tough it out, but he also suggested that I use a Netti pot. I started using it when I last go that big span of withdrawal symptoms that ended it all. I don't know if that was a cure or anything, but I know it helps me when I do have a runny nose.

    http://www.walgreens.com/store/catalog/Cough-and-Cold/NASAFLO-Neti-Pot/ID=prod3356564-product?V=G&ec=frgl_&ci_src=14110944&ci_sku=sku3355404

    If you don't have one, get one immediately! Maybe it will help you. It's a little scary and uncomfortable at first, but I use it all the time for my seasonal allergies. (my 8 year old son and 6 year old daughter use it when they have seasonal allergies or a cold).

    I'm very blessed that God has provided enough for my husband to earn that I don't have to work through all of this. I have been declared totally disabled, but am still waiting on receiving my hearing for my disability benefits. They say maybe August. So, when I don't feel good it's horrible, but I'm so sorry you have to try and go to work and function!

    Through Christ we can do all things!
    Kate

    ReplyDelete
  10. Roger, Thank you so much for adding so much great information to this section here! I'm so happy that you are able to help me inform others and lift others up. Most people with PCS are prescribed Elavil as a standard method of treatment for sleep, pain, and headache. We are put on a low dose: 10-75mg and increased as necessary.

    I was on as much as 75, but started with only 10. I think I got more and more used to it and needed more for the same effect. It was making my quality of life worse with the fatigue and heaviness it made me feel. With my PCS, I also have a herniated disk in my neck. My physical therapy helped relieve my neck pain and I decided it was time to come off the Amitriptyline (Elavil).

    I went off it cold turkey and after 2 days I felt like I must be dying. It was a horrible couple of days. My husband suggested that the Elavil was tough to come off and after doing some research I realized it was. I got back on it and talked to my doctor about coming off it. They suggested I reduce my dose by 10 mg every 2 weeks. I took me a while, but once I was done, I thought it would be over.

    Although I didn't feel the heaviness that went along with being on the Elavil every day, I still felt the withdrawal. I also felt it every time I reduced dosage. It took 9 weeks after I was off the Elavil to stop feeling the withdrawal symptoms. They would go away for a few days and then come back, or it would be constant for a week – 2 weeks. It felt like I had a horrible cold all the time.

    I had a final 2 weeks of the withdrawal that ended in the last part of November, and I haven't had any trouble since!


    So, I am so happy that you have a relationship with the King of Kings! He is the only one who can bring us out of the pit. He is the only one who can save us. I have come to know that this is a light and momentary trouble compared to eternity. It is horrible and hard and sucks a lot, but I am being held in the hands of the Great and Holy one. I may not be better until I am with Him, but I know that at least when that happens I will be brand new.

    I think you are right about being put through trials. Read through the book of James and you will see all the ways that God shapes us. I have seen great improvements in my life and my marriage through the last 18 months I have been sick. It's been much longer for you and I'm so sorry for that.

    While I was going through the withdrawal, I was told not to take any over the counter or herbal remedies to help with the symptoms. My doctor told me that there was a similar ingredient to Benedryl in the Elavil and when you are taken off of it, your body has to relearn how to produce that natural antihistamine. He said to tough it out, but he also suggested that I use a Netti pot. I started using it when I last go that big span of withdrawal symptoms that ended it all. I don't know if that was a cure or anything, but I know it helps me when I do have a runny nose.

    http://www.walgreens.com/store/catalog/Cough-and-Cold/NASAFLO-Neti-Pot/ID=prod3356564-product?V=G&ec=frgl_&ci_src=14110944&ci_sku=sku3355404

    If you don't have one, get one immediately! Maybe it will help you. It's a little scary and uncomfortable at first, but I use it all the time for my seasonal allergies. (my 8 year old son and 6 year old daughter use it when they have seasonal allergies or a cold).

    I'm very blessed that God has provided enough for my husband to earn that I don't have to work through all of this. I have been declared totally disabled, but am still waiting on receiving my hearing for my disability benefits. They say maybe August. So, when I don't feel good it's horrible, but I'm so sorry you have to try and go to work and function!

    Through Christ we can do all things!
    Kate

    ReplyDelete
  11. Roger, Thank you so much for adding so much great information to this section here! I'm so happy that you are able to help me inform others and lift others up. Most people with PCS are prescribed Elavil as a standard method of treatment for sleep, pain, and headache. We are put on a low dose: 10-75mg and increased as necessary.

    I was on as much as 75, but started with only 10. I think I got more and more used to it and needed more for the same effect. It was making my quality of life worse with the fatigue and heaviness it made me feel. With my PCS, I also have a herniated disk in my neck. My physical therapy helped relieve my neck pain and I decided it was time to come off the Amitriptyline (Elavil).

    I went off it cold turkey and after 2 days I felt like I must be dying. It was a horrible couple of days. My husband suggested that the Elavil was tough to come off and after doing some research I realized it was. I got back on it and talked to my doctor about coming off it. They suggested I reduce my dose by 10 mg every 2 weeks. I took me a while, but once I was done, I thought it would be over.

    Although I didn't feel the heaviness that went along with being on the Elavil every day, I still felt the withdrawal. I also felt it every time I reduced dosage. It took 9 weeks after I was off the Elavil to stop feeling the withdrawal symptoms. They would go away for a few days and then come back, or it would be constant for a week – 2 weeks. It felt like I had a horrible cold all the time.

    I had a final 2 weeks of the withdrawal that ended in the last part of November, and I haven't had any trouble since!

    ...

    ReplyDelete
  12. ...

    So, I am so happy that you have a relationship with the King of Kings! He is the only one who can bring us out of the pit. He is the only one who can save us. I have come to know that this is a light and momentary trouble compared to eternity. It is horrible and hard and sucks a lot, but I am being held in the hands of the Great and Holy one. I may not be better until I am with Him, but I know that at least when that happens I will be brand new.

    I think you are right about being put through trials. Read through the book of James and you will see all the ways that God shapes us. I have seen great improvements in my life and my marriage through the last 18 months I have been sick. It's been much longer for you and I'm so sorry for that.

    While I was going through the withdrawal, I was told not to take any over the counter or herbal remedies to help with the symptoms. My doctor told me that there was a similar ingredient to Benedryl in the Elavil and when you are taken off of it, your body has to relearn how to produce that natural antihistamine. He said to tough it out, but he also suggested that I use a Netti pot. I started using it when I last go that big span of withdrawal symptoms that ended it all. I don't know if that was a cure or anything, but I know it helps me when I do have a runny nose.

    http://www.walgreens.com/store/catalog/Cough-and-Cold/NASAFLO-Neti-Pot/ID=prod3356564-product?V=G&ec=frgl_&ci_src=14110944&ci_sku=sku3355404

    If you don't have one, get one immediately! Maybe it will help you. It's a little scary and uncomfortable at first, but I use it all the time for my seasonal allergies. (my 8 year old son and 6 year old daughter use it when they have seasonal allergies or a cold).

    Through Christ we can do all things!
    Kate

    ReplyDelete
  13. Hi Kate, and others following,

    Thank you also for the help that your blog has provided me. Wow, I didn't know that about Benedryl. I have been using it heavily for 6 years. I guess its another withdrawal I'll have to face as well. I have found however that Atrovent nasal spray works the best for the runny nose, and also Bentyl, which is commonly used for IBS symptoms. Elavil is an anticholinergic type of drug, and so is Atrovent and Bentyl, which makes sense that they would help the most, but will all make the withdrawal more difficult as they all need to be discontinued. Antihistamines offer me no help anyway so I was mainly taking Benedryl to help me sleep. However the Atrovent and Bentyl withdrawal is suddenly really scary and I'm just going to have to tough it out without any of those. It's very difficult at work, so I trade for night shift as much as possibe. It's a desk job and it's just 2 people on the night shift.

    I am not sure what a Netti pot is, but I'm guessing it's a tea pot looking thing that is used to run warm saline water through the sinuses. If so, I have another device called sinus rinse that is a plastic bottle that you squeeze warm saline water through each nostril with pre-mixed packets of salt and baking soda that is made by Niel Med that my doctor gave me for the post sinus surgery rinse-cleaning and hydration in 2002. It feels wonderful. Nevertheless both would be embarrassing to use at work. Not working is not an option as we have a handicapped daughter and I earn way too much to qualify for SSD and my wife cannot work as a result. When we were denied SSD, it meant bankruptcy was our only way out of the medical debt from my sweet little girl's hospitalization. I told my boss my situation, but no one really understands, not even my wife. I'm off for 3 weeks beginning today on annual leave time, so I hope the worse will be over by
    the time I have to work again.

    I read most of your blog and my Elavil/Benedryl/Bentyl/Atrovent withdrawal seems to still pale in comparison to all of the other horrible things that you had to endure with PCS which I knew nothing about before posting in this section. So I do apologize for my ignorance. But I hope that my posts do help others on Elavil withdrawal and to get the information and encouragement that you and everyone else in this section has given to me. Please let me know if I can do anything else here to help others. I am very new to blogging, and I just created my own blog last night that has a link to yours here. I'm going to change the theme from it's originally intended theme of motorcycle touring and photography.

    I've known Jesus all my life, so sometimes I get frustrated at God and become a spoiled Christain and I get so impatient for His help sometimes. I know it's wrong, and then I come back to him and ask for his forgiveness. I am so happy for you to have been much closer to Him after only a relatively short time than myself of knowing him. I sure do have a different outlook now though, knowing that I'm not alone in this and that He will never leave us and that He provides ways for Christains to meet by accident for support and fellowship. That is how I see it when I just happened to stumble onto your blog, and being able to finding, as well as being able to give support and encouragement to you and everyone else who finds this. I'll keep praying for you with your continued struggle with PCS and for everyone else here as well. Perhaps anyone who does not know Christ may come to know him through this blog and the dialogs here.

    God Bless Always,
    Roger

    ReplyDelete
  14. Roger,

    I'm sorry you have to go through this tough time of withdrawal. It's so difficult and scary and so many times I stared at the bottle of Amitriptyline thinking about taking more just so I didn't have to do it any more. I will pray for your strength and endurance through this. God will strengthen you through this and you will come to see that He knows your strength better than you do.

    Yes, the sinus rinse you do is the same as the Netti pot. I realize you can't do it at work, that would be weird ;-) Some people have never heard of it, but I find that if I do it a few times a week it helps me tremendously. I hope it can give you some marginal relief during your withdrawal.

    I'm sorry your situation is one in which you have to work, but I'm glad your wife and daughter have you to support them. I am sure I take for granted the fact that I am able to be home and not have to work. I can't imagine going through something that is so challenging physically and then having to go out and work through it. I'm glad you have the flexibility at your work to change shifts to suit your needs better.

    I'm glad you'll be blogging. This started as simply a release for me. I had to get all of my “stuff” off my chest and it felt good to send it into cyberspace away from me. After a while, I realized that I could share what I've gone through and learned and it might help one or two people.

    God wants us to humble ourselves, put away our pride, and come along side each other as brothers and sisters. We can't do that if we aren't honest and forthcoming about what we are going through.

    Please keep us posted on your withdrawal. I think it's good for others to have access to all the different experiences that people go through in their journey to be drug free. Thanks for your support and your struggle. God will use this time in your life to further His kingdom in some way.

    -With faith, hope, and love,
    Kate

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  15. Thank you Kate for your kind words of encouragement and prayer. I will keep you all updated. I haven't had much time for blogging just yet. I'll be in Spokane tomorrow for an MRI for the baby. She was born with paralyzed vocal chords. Hopefully the tracheostomy tube can come out, so she can talk. Babies are amazing healers! Anyway, I'll keep you and others here in prayer! I'm so happy to hear you're making good progress. Maybe I should go to Minneapolis and shovel snow for exercise :-) After my surgery I did use the sinus rinse at work in 2002. I'm lucky its an office job. My wife had horrible time at work with sinus, but because of pregnancy. She's well now.


    God Bless Always,
    Roger

    ReplyDelete
  16. Hi Kate,

    I'm going into my 4th of withdrawal now from Elavil (Amitriptyline). I'm sorry to say that the runny nose is still in full force and today was worse than ever. However the Sinus Rinse does help...at least it cleans it out. Have completely cut out the Bentyl and Atrovent. Though the Atrovent did provide some relief it has worn off and was starting to make things worse. The other symptoms....headaches, hiccups, snappy and irritable mood have all greatly reduced. I still have bad insomnia though.

    My prayer is for this post and my others, all of your posts and this blog and my eventual blog to help others to find hope and relief. I also pray that when others do find this site they may meet Him, our great almighty God.

    Today I have realized and defined (with God's help) a huge block of sin in my life. When I suddenly realized it I went ti Him and asked for his strength to help me put it out of my life. I know I'm not at all perfect and may fall back from time to time, but I did find true relief to my symptoms. Sometimes He waits for us to humble ourselves, like Job and many others before he applies his faith.

    I thank God so much for letting me find this site, your fellowship and encouragement and prayer, and HIS wisdom. I have a long way to go but this is a great start.

    Thank you so much also! I wish you and your family a wonderful Christmas and His blessings in the new year.

    With many thanks, prayer, hope and love,
    Roger

    ReplyDelete
  17. Roger,

    I am so excited and full of joy for you! It's amazing how such seemingly simple things can lead us on the right path!

    God is so good!

    I'm happy for you that you searched for sin in your life and were able to face it and bring it to our Father. That can make a huge difference.

    Good for you for getting off meds. I'm glad the sinus rinse is helping. Your wife must be thrilled to see the change in mood swings. If she's not right away, she will be. It takes a lot to go through trials like this, especially when you feel alone.

    For me, the biggest improvement I faced was when I realized that my husband is human and can only provide me with so much. For everything else, I need God. God is perfect and will always lift me up when I need someone. I can't blame my husband for being human. :-)

    Keep with it, my sleep is still not perfect. I wake up easily in the middle of the night and have a horrible time falling back to sleep. My PCS treatment is an exercise plan, so I think that is helping with my ability to fall asleep. I'm so tired after my 20 minutes a day on the treadmill, that I'm able to pass out when I want. I wish I could stay asleep!

    Your posting has been such an encouragement to me, and proof that God has reasons for letting things happen to us. I've actually known now what pure joy in the face of trials feels like!

    Merry Christmas to you and your family.
    Kate

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  18. Hi Kate,

    Well, my famous last words. Everything I said I meant and I know is true. But now my nose has become the worse that it has been. I can only lay in bed because the water just keeps coming out. I rather it go into my stomach so I don't dehydrate. I am so scared. I don't think I can go on if I have to work and it's still this bad in 2 weeks. I'm sorry for the bad news since earlier. Thank you for your prayers. When I cry I cannot believe how it's like a slow running faucet. I may need a hospital detox admittance in my case. 18 years at 150mg. I must be crazy going this alone. My wife and I are really talking about separation. She can't take it anymore. I don't blame her. I'm so sorry.

    God Bless,
    Roger

    ReplyDelete
  19. Roger,

    I'm sorry you are having such a difficult time. I can't even imagine being on Amitriptyline for so long and then trying to get off it. You may indeed need help.

    I am sorry you and your wife are having trouble. Hopefully you can get through this together. I know you have a lot on your shoulders, but showing your wife love is important too. I'll pray for extra strength for you to be able to show her the love she needs to see from you.

    I remember feeling the way your post sounds. I felt like I was dying when I was going through the withdrawal, but I wasn't on as much as you for as long. What does your doctor say? Do you have a good primary care physician who can help you through this.

    I am not a doctor, and although I have some experience with coming off this medication, I don't feel comfortable if you don't consult a doctor.

    You aren't trying to stop cold turkey are you? I went down 10 mg every 2 weeks until I was done and then it still took me a long time to get over it. It's a rough drug to come off of.

    Get the help you need, and I will keep praying for you and your family. I'm sorry I can't be of more help!

    In Him we can do all things,
    Kate

    ReplyDelete
  20. Kate,

    Your prayer and encouragement are more than I could ever ask. Thank you so much for your replies and dialog. That is more help than I could ever expect. My doctor, who I saw last week, said to go back to 10 or 20 mg and decrease by 5 every 2 weeks if I need to. He gave me 10mg tabs new Rx for that reason. I think I'll do that. I can't not work. I came down 25mg at a time from 150mg and perhaps I rushed it. I guess I didn't think it would be this bad. I just hate to go in reverse and this time be for nothing, but I'm likely to do it after more thought though now.

    I love my wife dearly. I went to her today and tried to apologize to her again for being so moody. Our trip to Spokane really threw a wrench in the machine because of bad news about my daughter. Her condition has become worse instead of better with her vocal chords. She's not making the talk or crying sounds through the trach as she was in September, and the chords have become more inflamed and less functional. Anyway, this just adds fuel to the fire.

    How are you professing with the exercise? I really need to exercise more. I'm sure aerobics can't hurt my mental improvement. And it will help my sleep too.

    Thank you for your encouragement and prayer so much,
    God Bless,
    Roger

    ReplyDelete
  21. I'm sorry, I meant "how are you progressing".

    ReplyDelete
  22. Hi Kate,

    Perhaps my last two posts, or at least the one before (and possibly others) should be deleted, and then this one too. I feel it's too negative and may do more harm than good. But I'll leave it up to your judgment. I do not intend or want anyone to feel uncomfortable with the info here that I contributed. I am going to seek regular to seek additional help.

    God bless and may He keep us strong and faithful,
    Roger

    ReplyDelete
  23. Roger,

    If you want me to delete them, I certainly will for your sake. I think, however, that being honest and letting others know how tough things can be is helpful to everyone.

    Let me know what you decide, but I am grateful for your openness and know it will help someone who is having a tough time.

    Please don't be embarrassed about anything. It's so tough to go through all this stuff! Keep a positive attitude and know that you fit in God's great hands.

    When you are feeling negative, it's ok to vent, especially with those that know what you are going through! I'm here for you!

    I have come across a great read plan through youversion.com that you should take a look at:

    http://www.youversion.com/reading-plans/should-life-hurt-this-bad

    It's a 2 week plan that focuses on why life can be hard and helps you reflect on it.

    Thanks!
    Kate

    ReplyDelete
  24. Hi Kate,

    Yes, leave it on the blog. I was not asking for my sake, only for the sake of others who may find this site and also for you since it's your blog.

    Thank you so much for your encouragement. I hope that someone will find comfort here in this blog, not just for Elavil withdrawal, but also for info about PCS, and any other topic here, and hopefully they will find God too!

    Thank you so much for being there, and I will go as far to say for being a friend too and sharing your dialog.

    I will go look at those links you provided as well.

    I am not sure if the email posts are private, but I will check it out. The email is really convenient for using only a smartphone :-)

    God Bless and Merry Christmas! God always is Awesome!

    ReplyDelete
  25. Hey, are the itchy watery eyes side effects from taking the medication or from NOT taking the medication. I'm on 75mg and my eyes feel like theyre full of broken glass and was wondering if it was the meds.

    D

    ReplyDelete
  26. Hi D,

    I felt the itchy watery eyes after I stopped the medication. I didn't have that as a side effect while I was on it.

    It might be different for you though. I would definitely talk to your doctor and maybe also find out if you are allergic to something else?

    Good luck!
    Kate

    ReplyDelete
  27. Hi D,

    I had the itchy watery eyes while still taking the Amitrip. It began in January of 2009. I think though it was because of a dose reduction in an attempt to taper off so the med wouldnt affect allergy skin testing. However I immediately went back to the normal dose (at the time of 100mg). It was Thr first time ever though in 18 years that that happened and I've been up and down on doses through out my time taking it. I also had a very bad 2 days of a very runny/drippy nose at that time...but the general persistent light to medreses runny nose began in 2004. I don't know why it took from 1993-2004 to start having the runny nose. Are your eyes worse at night? Mine are worse when laying down. My GP said it was because the fluid was flowing in reverse into my eyes from my sinuses when laying down.

    Today I'm at week 5 of the withdrawal. Things seem to be getting better. I did have to start using the Atrovent nasal spray again since I have to work tomorrow. Sinus rinse does help, but I guess I didn't sterilize the bottle well enough. I got a bad sinus infection from it that required antibiotics. However if you do not have a runny nose then maybe you don't need anything for that. However I would go to a doctor to rule out conjunctivitis or pink eye anyway if it doesn't get better.

    God Bless,
    Roger

    ReplyDelete
  28. Well, it's been over 10 weeks and still no improvement after stopping the Amitriptyline. Nose is still profusely runny with watery eyes. There has not been any slow down or tempoary stops to it. It's just constant. OK, my thinking now is that it's not the Amitriptyline after all. It's just vaso-motor rhinorrhea caused by sinus surgery in 2002. I'm going back on the Amitrip as I cannot stand it anymore. I will continue to pray for all of you with this, and the other issues on this blog, especially for you Kate. God bless everyone here.
    Roger

    ReplyDelete
  29. Roger, Good luck. I understand that things are hard for you. I'm so sorry that you haven't seen any improvement.

    I am happy for your faith and I hope you can continue to feel God's love for you during this trial.

    Faith, hope, and love,
    Kate

    ReplyDelete
  30. Thank you Kate and Roger for your posts. I took myself off of Elavil a few weeks ago and began feeling so horrible and couldn't understand what was wrong with me until I started researching and found your site. God is so good and I'm thankful for the information you have provided.

    I hope I have found the answer to what has been wrong with me for the past week or so. I was taking 75 mg Elavil since 2004 to prevent migraines. Since the migraines were hormone related and I went through the "change" about a year ago, I decided it was time to try and wean myself off of the Elavil. My doctor told me it wouldn't be any problem.

    Well I tapered off from 75 to 50 to 25mg over about a 1 year period and finally came off of them completely two weeks ago. I haven't slept through night since and have felt muddy headed and exhausted. One symptom I have that I don't see mentioned here is shortness of breath. I feel like I just can't get enough oxygen! I've started keeping a daily journal to keep track of my sleeping, eating, and exercise. I have lots of friends praying for me and a loving supportive family which I know is most important. My husband has been out of work since 2008 - he had Stage 4 tonsillar cancer so I am the only one working. He has been free from cancer for 2 years now but cannot find work. God is in control and He does walk beside us as we go through these trials.

    I will keep you both in my prayers and will check back to see how your both progressing. Thank you again! Lisa in Florida

    ReplyDelete
    Replies
    1. I have the shortness of breath too and haven't slept since weaning off completely. I took 100 mgs at bedtime for 15 years. I realized it was not working anymore and started weaning myself about 6 months ago... from 100mg to 75mg to 50mg and last 25mg. I have been completely free of it for almost 3 months now. I feel like I can't draw a full breath and sleep is non-existant. I find consolation knowing it IS from the Elavil and I WILL get better but now know, it is going to be awhile before being rid of all these negative effects.

      Delete
  31. Lisa,

    Thank you for writing. It is so encouraging to know that people can help each other through tough times by sharing experiences. I'm so glad you are walking with the Lord!

    My Elavil experiences were not happy ones and when I was going through the withdrawal I couldn't understand what was happening to me. I'm so sorry that you are going through it now. I had to wean off so slowly, but it wasn't slow enough. They do have 1 mg doses you can go on, but I had gone so far, I didn't want to get back on it in any way.

    Lisa – I am so sorry about your husband. I'm so happy he's cancer free, but I'm sure there are still residual issues. I can't imagine dealing with multiple health issues together. It seems like you are in a positive and peaceful place. I look up to that and will take that with me.

    Keep hope and faith!

    Love, Kate

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  32. Hi Lisa & Kate,

    I'm keeping both of you in my prayers! I went through Elavil withdrawal in December and January. I too had the hard to breath symptoms and lack of sleep. My chief complaint though was a very runny nose, but I have underlying sinus issues anyway. It took me about a month to feel normal again, except for the runny nose which I still have. I figure there is another cause now for that, which I'm still searching. But anyway, It was a horrible time, and right during Christmas. I, like Kate, probably tapered too fast. I feel great now though physically, but sometimes depressed mentally. One thing for sure is that without God, it would not have been possible to get through it.

    I've since learned to keep Jesus the center of my life. One day there will be no more pain and suffering, and all tears will be wiped away. I look forward to that with peace inside me now in the mean time because of that great promise. One thing I did was to examine my life and identify areas that I needed changing, of my attitude mostly, and getting right with Him in my mind and spirit. I used to blame Him and get angry, but it's not his fault. And I know he can miraculously heal us all just like a snap of a finger, but I also think he let's us go through these trials to help us grow stronger in spirit and mind and to be closer to him. Stay with it and don't let Satan tempt you to fall back onto the Elavil again. It will get better. As with all drugs, coming down off them is a challenge, and Elavil is one of the worse ones.

    I'll keep you in my prayers, and thank you so much for sharing with us here.

    God Bless Always,
    Roger

    ReplyDelete
  33. Hi Kate,

    I just found your site and can't thank you enough for the great information. I'm about 10 days into the withdrawal from Elavil. It amazes me how difficult it is to get a clear picture on this drug withdrawal and duration. I'm sure many give up because they think the withdrawal will go on forever. I'm not pleased with suffering for 2 months or longer but at least I can see a light at the end of the tunnel. I to have God with me - I don't think it can be done without him.

    Annette

    ReplyDelete
  34. Hi Roger,

    Thanks for checking in. Great to hear from you. It seems like you are doing ok, at least spiritually. I feel like my relationship with God goes on roller-coaster rides sometimes. I am in a great place with Him now, but that can also open us up to spiritual attacks by the evil one.

    Some may think it's weird or hokey, but I believe when great things are happening in God's kingdom, satan tries to fight back. I know that God will hold me in His hand as I go through trials, but I am prepared for the attacks.

    Thanks!
    Kate

    ReplyDelete
  35. Annette,

    Thanks for posting. I'm sorry you are going through this! I was flying around the Internet when I started going through the withdrawal and couldn't find anything. I couldn't believe there was no information on it! I'm glad that finding you are not alone helps you.

    You are right about not being able to get through tough stuff like this without the King of Kings! I am glad you have a relationship with Him and can rely on Him for comfort. I think it was 3 months before I was ok every day, but I still had relapses where I felt the same feelings as the withdrawal for a few days at a time. My last one of those was a couple months ago.

    I'm not going to lie, it's rough, but you can do it! Stick with it. How are you doing now? I used the Netti Pot a lot and Puffs Plus with Lotion and Aloe. I put Neosporin on my nose all day long (use polysporin if you have a nickel allergy). I slept on the couch, because my poor husband would be kept awake all night long.

    Do you work or are you able to suffer at home? I was able to suffer at home. It was really tough, because I remember that I would be awake all night and feel like I had to take little naps all day. Good luck, I'll pray that your withdrawal goes quickly and that you can have the endurance and perseverance to get through it. All can be done in His great name!

    Faith, hope, and love,
    Kate

    ReplyDelete
  36. Thanks for writing - I have been praying for answers. I'm up alot and I take little naps during the day. I'm able to suffer at home. I want to give up everyday, but there is nothing to give up. I can't go back on Elavil because it was giving me extreme heart pulpatations. I feel like I have the flu - no energy. Concentration on anything is difficult. Yesterday I managed to read the book, "The Boy who Came Back from Heaven". If you haven't read it - I highly recommend it. I long to feel nornal - and I'm just not sure that is ever going to happen. I'm hanging on with prayer. I have no support from doctors. They just want to treat symptoms with more medication. You are the only one I have found on the internet that shows hope and promise. And gives a time frame - I'm holding on to the 9 week mark. I have a fear of doctors and medication. I wonder if I will ever have a normal full night sleep again. I pray - I hope - I believe.

    Thank you so much.

    Annette

    ReplyDelete
  37. Annette,

    I haven't had the opportunity to read that book. I will check it out. I can read for short bursts of time, but it sometimes can help me to relax my brain. Hang in there. One day at a time is the only way to do it. I hope that you can get better every day. I think you will get a normal night of sleep one day soon.

    Love, Kate

    ReplyDelete
  38. Kate, Thanks for your support. I still haven't experienced normal sleep. I've been on elavil for years and my high dose was 125mg. This fact is leading me to believe I may never feel normal again. I have been fighting agitation, anxiety, and allergy symptoms. I have used vitamin b6 - which helps with the agitation and anxiety but it causes me to itch all over. If there is a side effect I'm going to get it. I tried an antihistamine yesterday. I should have know better. It took away the agitation but it almost knocked me out. I also got aggravated heart pulpitations. My head is so dull snd foggy. I'm sure this is because of lack of sleep. Do you have any suggestions for helping some of the withdrawal symptoms naturally?

    Happy Easter!
    Annette

    ReplyDelete
  39. Hi Annette,

    I hope your Easter was happy, and I hope your symptoms are reducing. I am the same with side effects, anything will throw me for a loop.

    As far as natural suggestions for helping with your withdrawal symptoms, I just did a few things. I used a Netti Pot sinus rinse daily until my nose was done running (about 3 months). It really helped to flush things out and give me minimal relief. I made sure to do it 20 min before bed, b/c if you do it right before bed you can get some of the drip from the sinus rinse.

    Nights were the worst. I didn't have a good solution for that. I mostly stayed up messing around online or watching tv until the wee hours of the morning, passed out on the couch for a few hours, got the kids on the bus and then snoozed a little here and there during the day when I could.

    I tried to keep myself up all day so that I would be more tired at night, but that didn't work a lot of the time. I was a zombie for a few months. Now that I'm over the withdrawal, I do avoid naps so that I can sleep at night.

    It's not like you can just force yourself to stay in bed, b/c of the drippy nose! It's horrible, and I'm so sorry you are having this problem!

    Sometimes if I was very tired, I could plug a few tissues in my nose and put some more on the pillow to catch the drip and sleep in bed for a while. It didn't last the whole night a lot of times, but I could occasionally make it happen.

    Keep your faith! You are being sharpened every day!
    Love, Kate

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  40. Hi Kate, Annette, and others,

    I wanted to give you all an update. First, for Annette, hang tough and don't let the enemy (Satan) discourage you. Lately I have gone through some emotional stress unrelated to Elavil withdrawal. It has made my symptoms worse, but it did help a lot to pray and search my heart for anything that may be displeasing to God. I also remember some of the great examples of suffering that God sometimes allows for us to go through to make us stronger, such as Job and the Isrealites in the desert with Moses. First, He promises us that he will never let us go through something we cannot handle. So even though I felt like dying a few times it was He who lifted me, also with the help of fellow believers such as you all here. Since the tragedy in Japan something has changed inside me that increased my relationship with God. I know these sufferings are temporary and one day we will all be healed of every pain, sickness and sorrow. The end times as they are revealed gave me a burst of hope and therefore comfort. I'm sad for those suffering, and I know the USA could be next, but even so I have more faith in God the more I realize that his great wisdom makes my own wisdom seem foolish and that one day this suffering will all be gone. We just have to endure and keep faith and to try to remain holy. The book of James really helps me because I get discouraged and therefore angry easily. As for my withdrawal I'm pleased that I have lost 20 pounds due to the lack of Elavil which caused weight gain and it was slow and gradual than with these fad diets that promises rapid weight loss. I still have chronic rhinitis symptoms, but even they are lessening now and my sleep is better. I truly believe that continued perseverance and faith has been the key. I am not able to suffer at home as I must work, but somehow God has never let me down in getting through the day.

    I'm praying for us all here, for all our issues, including PCS and Elavil withdrawal.

    God Bless you all,
    Roger

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  41. Hi Kate,

    I managed to stay in bed until 4:30am. 2:00am has been my average. I'm hoping to feel more rested today. The agitation and anxiety has subsided to a tolerable level. This is very good because I didn't know how I was going to deal with this side-effect. Headaches seem to be leveling off. I believe this is my 6th week. The light is starting to shine a little bigger at the end of the tunnel.
    Thank-you for your suggestions. I do not know how you have managed with children. My children are raised. I just have a wedding to try and attend in August. My eldest daughter is getting married. She has a wedding planner and she is handling everything.

    I have gained strength through your perseverance. I pray your side-effects someday go away. I just believe we all will get better. The book I told you about - I read it in big print. I know the regular print can be difficult.

    Hi Roger,
    I know what you mean about Japan changing ones outlook. I happen to live on the coast in Northern California. Three of the Pacific plates cross over each other just west of us. A year ago Jan. we had an earthquake and sustained about $50,000.00 worth of damage. When Japan got hit we were told to evacuate. I pray for Japan. History is showing us that we can not control nature. Let go - Let God - and have faith.

    Love, Annette

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  42. Annette! Yeay!

    I am so excited that you are starting to see improvement – amazing! God is Good! Maybe you will be all better by August! My prayer for you is that the Lord will show you little signs of improvement every week from now until you are better. I hope you don't have setbacks, but if you do, I hope you can stay positive through them.

    I remember even after the constant symptoms of withdrawal would stop, I would have relapses that would last a few days to a week and then be gone for a week or two and then come back. Don't be surprised if you start having good days and bad days.

    Thanks for your support and encouragement for me. My kids are actually a pretty big help. They inspire me to want to be better every day, and my husband has an unbelievable well of patience. He has taught them at 7 and 8 to do their own laundry, and help out with some other chores in the house. My husband does all kinds of stuff around the house. They are my little support group cheering me on and picking me up when I'm down.

    I really pray that you will see major improvements in your life and will be fully healed by your daughter's wedding.

    Love, Kate

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  43. Roger,

    Thank you for the update! I'm sorry you have had some stress in your life that have accelerated your symptoms. I'm glad, however, that you have found closeness with the Lord through it. I go through some crazy ups and downs on my journey toward healing.

    I find that I argue with God and with myself and go through so many different thoughts and ideas. I spin and spin until I realize that I need to slow down and live each day at a time. I need to live in God's moments.

    I'm so happy you have faith and can persevere and let God be the glory! Keep it up!

    Love, Kate

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  44. Hi all, I came across this site trying to find withdrawal information. Been on this drug amitryptiline for 4yrs now and Ive had enough of the mental addiction to it. I originally was put on this to help with anxiety related to perimenpoause problems and I have found over the years it has seemed to have caused me all aches and pains, I have them in my back and hands. I also have yellowing in the whites of my eyes. I decided to come off and its been nearly 3 weeks now. I suffered from insomnia which is getting better although I am jerked awake, then have a racing heart. I feel as if I have come down with flu and have a runny nose. I believe this must be the withdrawal even though I was only taking 2.5mg as I managed to cut right down over the last year. I hope these symptoms dont last too long and its good to know I am not alone in this as I think the doctors just dismiss withdrawal symptoms.

    ReplyDelete
  45. Hi,

    I'm so sorry you are going through this withdrawal process. Even with a low dose and having stepped down, it sounds like you are hit with it. Maybe you can keep us posted on how long you have symptoms of withdrawal.

    I stepped down to 10mg and then stopped after that, not knowing there were lower doses until it was too late. My withdrawal went on for a total of about 10 weeks straight and then it was spotted for the next few months having relapses. I wonder if stopping at a lower dose will make the withdrawal less intense or last for a shorter period.

    I hope it's not too bad for you and that you can develop a good sleep pattern and get through the runny nose and racing heart. Good luck!

    Kate

    ReplyDelete
  46. Hi Kate

    10 weeks sounds like a long time to wait to feel normal again.
    I managed to cut down to 2.5mg because I used a pill cutter so I quartered my 10mg pills! Hopefully I'll stay anxiety free, Ive been taking St John's Wort, I think this may be helping a little to counteract the withdrawal.
    What I find astounding is the praise this drug gets, especially on American sites, everyone talks as if this is a wonder drug, I have felt a bit like a drug addict over the years with a great psychological need to have it every day at 7pm, I didn't feel I could relax until I knew Id taken it, then panic if I forgot to.
    I'll be happy when I know I'm finally free, I'll keep you posted on any developments.

    England

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  47. Hi Kate & Everyone,
    I praise God that I found this website! I am withdrawing from generic Elavil and to make matters worse, it is a combined drug that I have been on since 1985 which also contains Librium. I had terrible panic attacks before anyone really talked about them and I had no idea what was happening to me. It was the worse time of my life. I had a little girl and a husband and I could not do anything. I went for three months without any medication! I lost 30 pounds, my husband said I shook in my sleep. I could not drive, function at all. My husband worked nights and he took me and my daughter to my parents' home when he went to work and picked us up when he got home. I praise God for this illness, because it brought me and my family back to Him! Because the panic attacks were so bad, one right after the other, like labor pains, I was so happy to find a drug (Limbitrol) which took away the panic. Being on it for so many years made me feel that I could not possibly function without it. Well, about 4 years ago, I decided I wanted to get off of it. I tried to withdraw and was a mess. The doctor is not helpful but I was afraid to switch -- what if he wouldn't give me the Rx?? So, I talked to a pharmacist and started to withdraw slowly. I mean, slowly. I went from 4 pills a day (5 mg. of librium and 12.5 of generic elavil) to 2. I have stayed at 2 for the last 2 years. Now I am trying to get down to 1 and then none. The most successful way for me is to take 2 pills for 3 days and then 1 pill and to stay there for about 6 months. I guess because Librium is a controlled substance and very addictive, it might be worse than just Elavil. I don't know. All I know is that I could never do this any faster. Plus, I feel like I must be at a certain place where I know I am okay and stay there for months before I try anything else. It may take me another year or two to get off of it completely, but I work full time (must, we need the $). But I am so thankful to Jesus for seeing me through and for helping me every step of the way. I use the generic for Flonase for allergies and I wonder if it would help any of you with your nose running and sinus trouble? I have not experienced any of that and I wonder if it's the Flonase that has helped? It really works! Well, I am happy to have met you all, so to speak, in this website and I will pray for all of you and ask your prayers, too. God bless you, Kate, for starting this website. Your friend, Emma

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  48. Dear Emma,

    I praise God too that you found this web site and Kate's blog. The shakiness is likely caused by any withdrawal from Librium if you had stopped it, even for a short time. I believe it's in the same family as Klonopin, which I'm severely addicted to. I ran out of it once and went through the same kind of shaky symptoms, and I didn't even sleep for 2 weeks. I could do nothing, I was out of work on sick leave during that time. When I asked a friend to get me a refill (I could not drive) I popped 2 pills and I was normal in about an hour. Then I got the clue to the fact it was Klonopin withdrawal. Elavil will make you have flu like symptoms, and anger and a short temper. If you didn't get a runny nose, you are spared my worse symptom. It's been 6 months since I stopped Elavil and I still have a runny nose. It's an anti-cholinergic which MAY cause runny nose, but not for everyone. I was on it for more than 15 years, and I had sinus surgery, so I think that combo caused the runny nose. Flonase does nothing for me. I use Atrovent spray for what my allergist calls non-allergic rhinitis or NAR. It gets me by so I can work, but my quality of life is greatly diminished because of it. I do know it's temporary though as when Jesus returns this is all done with. That's truly what keeps me going on in this life. You have the right idea to go slow. I am back on Klonopin because for me, after an 8 month attempt to withdrawal from it, I gave up. But Elavil withdrawal will end, maybe slowly, but it's not as bad as Klonopin...or any other Benzodiazapine.

    I'll be praying for you, and God Bless,
    Don't lose hope!

    Your friend,
    Roger

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  49. Thanks, Roger, and I will pray for you. Jesus walks by your side.
    Your friend,
    Emma

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  50. Emma,

    I praise God that He is glorified by people coming together for each other. Through sickness and hurt, we see Him more clearly and our priorities fall into line the way they should. I am so sorry that you have struggled for so long with illness and medication. Amazing that the stuff that is supposed to help us ends up wrecking our bodies so thoroughly.

    I'm glad you and your family are close to each other and to the King through all this. It can tear some apart. Mine, like yours has been brought closer and we live in the peace of the Lord. I'm glad you can wean down slowly and I wish I had known to go slower than I did. I'm really glad you don't have the runny nose – that was one of my worst issues when I stopped. I don't have anything more that normal allergy symptoms seasonally now.

    I'm sorry you have to work through this. I am blessed that God has provided enough for me not to work and we just got approved for disability, so we are able to get some of our enormous amount of debt paid off. I pray for your patience and endurance through the wean and the withdrawal, and that of your husband and family.

    Thanks!
    Kate


    Roger,

    Thanks for responding so quickly! You are the go to guy for this kind of thing. God has blessed you with an opportunity to help others in your suffering. It sounds like an oxymoron to me, but I get it. I have been blessed with a curse also ;-) How are you doing otherwise? How is your family?

    I pray that one day your runny nose will cease and you will be able to be healed. All for His glory!

    Kate

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  51. Hi Kate,

    Thank you for your response also, and for asking about my family, and most of all your prayers. The runny nose is not as bad, but I'm on a new medication that was needed to replace the Elavil due to increased depression. It's called Geodon. I tried cold turkey off of it to see what to expect, and I just got depressed again with no physical symptoms. But it was only a 2 day trial. It works like Prozac or similar, which I can cold turkey ok, because I have in the past, off SSRI's, though Geodon affects dopamine too besides serrotonin. Anyway, I think it has helped with the runny nose too. My allergist/ENT wants me to try turbinate cauterization for the runny nose, but I think I should wait longer. I trust Jesus more than him.

    My family is well and my little girl is 15 months now. My wife, bless her, has been doing most of the work with the baby, because I work nights and she doesn't work. I am getting by in life, but we are missing out on things we could be doing. However, I know things could be worse. How are you doing with your continued recovery from your Post Concussion Syndrome? I have been keeping you in my prayers. I have changed much since December with my outlook. One day this will be just a memory, if even that, when Jesus returns and we all get new bodies. That is my greatest excitement now in my life. I praise him for bringing us closer to him through these trials. Also, my wife is going to my church with me. I pray she will start praying to Jesus instead of Mary. She is a strong Catholic, and I hope that she will one day see the real truth about salvation. That is most important to me now is her salvation. I cannot judge her, I know she loves God. But I don't know if she fully understands that we need to be with Jesus in order to reach God's kingdom, and not his mother Mary...and all the other catholic non-biblical traditions of the catholic church.

    God Bless you and my prayers are with you!
    Your friend,
    Roger

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  52. Dear Kate,
    Thank you for your reply. You are truly an amazing person! Thank you for all you have said and done for all of those, including myself, who read this blog. I am doing very well, with God's help, and I take one day at a time. I have a wonderful husband and a family that loves me very much and I them. I hope and pray that you and your family have a blessed 4th of July and we can give thanks to Our God for all he has given us -- our country, friends, family and, most importantly, Himself.
    Your friend,
    Emma

    ReplyDelete
  53. Dear Roger,
    I read your post about your wife and I felt I was being called to testify to you. I am a devout Roman Catholic. I believe that Jesus is my Savior and that He gave His Life for me and you. There are so many misunderstandings about our Faith as Catholics. I believe that I can probably answer any questions you have about Catholicism and explain what the Church teaches, if you would like. Remember, Roger, the Bible as we know it today was not put together until years after Christ ascended into heaven. We had tradition first. As far as your wife praying to Mary, let me try to explain. The Blessed Virgin Mary is the Mother of God. If she were not, she would have no significance to us. At the wedding feast at Cana, she tells Jesus that they have run out of wine and He clearly lets her know that His time for performing miracles has not yet come. She ignores Him and says to the waiter, "Do whatever He tells you." On this statement alone, Jesus Christ, the King of Kings, performs His first miracle. There are very few words of Mary in the Bible and the significance of this to us is that we can ask her to pray for us -- to go to her Son to ask Him for us to pray with us -- not that she is God or possesses powers to perform miracles, but that He will refuse His mother nothing, if it is not contrary to the Will of The Father. The only mediator between man and The Father is Jesus Christ BUT between us and Jesus we can ask Mary to pray for us to her Son. We don't have to pray (converse) to Mary. We can go directly to Jesus, but what son would refuse his mother anything she asks as a favor to her? I am not trying to convert you, just to clarify a few things. If you would prefer not to discuss this again, I will respect your wishes. God bless you and your family and may He give you peace.
    Your Friend,
    Emmy

    ReplyDelete
  54. Hi Roger,
    I signed "Emmy", as I am called by friends but I am "Emma" who has been blogging. Didn't want to confuse you!

    Also, I thought of this after I posted. All of God's revelation is not contained in the Bible. Nowhere in the Bible does it suggest this. In fact, St. Paul wrote to the Thessalonians that they should "stand firm and hold to the traditions which you were taught by us, either by word of mouth or by letter" (2 Thes 2:15).

    The only safe way to approach the Bible is in light of the Tradition that can be traced back to the apostles. This is the Tradition preserved and taught by the Catholic Church.

    I hope I have helped you see where we Catholics are coming from.

    God bless,
    Your Friend in Christ,
    Emmy (Emma)

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  55. Dear Emmy,

    Thank you so much for being open to me about the Catholic church. I don't want to offend anyone, and I'm a flexible person, and I enjoy any discussion about our Lord. He is my favorite subject. Thank you also for your clarification about what I said. I know my wife truly loves God. Her life proves it, and her love and understanding of me and my problem.

    Thanks Again,
    Your friend Roger

    PS...I'm sorry for being brief but I'm at work now and in using my phone to type this :-)

    ReplyDelete
  56. Dear Roger,
    I'm glad I didn't offend you and if you have any questions about the Catholic Faith, I'll do my best to answer them. Have a great day!

    Your friend,
    Emmy

    ReplyDelete
  57. Roger and Emmy

    http://concussionkate.blogspot.com/2011/07/faith-and-healing.html

    Here is a place for you to safely continue your discussion and any other discussions of this nature.

    Thanks!
    Kate

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    Replies
    1. Hi Kate,

      Really enjoyed reading all of this but I guess you got rid of Roger & Emma with that comment!

      RH

      Delete
    2. RH,

      Hey, I'm sorry if I offended you by moving their discussion to another place. It was only my intent to keep this page relevant to the Amitriptyline withdrawal. I have other areas of my blog related to faith. Thanks for the comment and I hope you have a great day!

      Kate

      Delete
    3. This comment has been removed by the author.

      Delete
    4. Hi Kate,
      It's been a long time since I posted here. I've been off the Elavil all this time and I feel much better after the withdrawal ended. I still have the runny nose though so it's obviously not part of the withdrawal. I hope you are better too with the PCS recovery.

      I still read every post and stay informed. But I stopped replying out of fear of offending someone else. You were right to move my conversation with Emma elsewhere. I wasn't offended. Just felt guilty is all. Anyway, that was a long time ago. I'm long over that episode.

      Thanks so much for your support and prayers!
      Roger

      P.S. I was not feeling rid of.

      Delete
    5. Hey Roger,

      Great news that you are feeling better, although I am sorry for your runny nose. That can be rough. I'm glad you weren't feeling offended. I am happy to have discussions of faith for sure in some of the other areas of this blog. No need to feel guilty at all.

      Here's a good place to start: http://concussionkate.blogspot.com/2013/08/faith-and-healing.html

      -Kate

      Delete
  58. Diagnosed with Fibromyalgia in 2002 and put onto Elavil 10 mg. to deal with the pain, migraines and other problems with Fibromyalgia Syndrome.


    I don't drink, do drugs, smoke, etc., etc., so am very sensitive to medications in general. Withdrawal has been surprisingly nasty and unexpected, even with the very slow reduction in dosage. Probable that the long-term use has created this withdrawal problem.

    In any case, personally, BACH RESCUE REMEDY (a registered homeopathic remedy) has been of immense help to me. Places that sell herbal remedies most often carry this item, often along with the 38 specific individual Bach Flower Remedies. The Bach Rescue Remedy is composed of five of the 38 remedies.

    I've been reading a book called "Bach Flower Remedies to the Rescue by Gregory Vlamis, Forward by Dr. Charles K. Elliott, Former Physician to Her Majesty the Queen" and find it highly enlightening.

    Between the remedies and the book, I'm extremely pleased, relieved, and I don't plan on ever being without either.

    I hope the above information is of benefit to some other person such as myself who is going through a horrible experience withdrawing from this prescription drug called Elavil, a drug that should come with even larger warning signs than one finds (in Canada)on cigarette packages!

    Light-at-the-end-of-the-tunnel.

    ReplyDelete
  59. P.S.:- I should mention my withdrawal symptoms going down from 40 mg. to 30 were dizziness, nausea and body temperature changes. I did what I was advised to do by both my medical doctor and my pharmacist: get back up to 40 mg. until I felt stable and then reduce even more slowly and by 5 mg. instead of 10. So that meant using a 25 mg. along with a 10 mg. tablet. It was the drop from 15 mg. to 10 where I ran into real trouble and, like you, Kate, I ended up with a terrifying feeling of isolation and, as you said, "going crazy". Fortunately, the emotional/mental state so out of character for me that I guessed it was an adverse reaction to the last drop in dosage. (Too bad I had not yet come across your blog to see that I wasn't the only one who's had that extremely frightening withdrawal reaction which progressed to wild heart palpitations and difficulty catching my breath - always worse lying down than sitting or standing.) I brought my dosage back to 20 mg. but it takes time for the body to catch up.

    Meanwhile, I started on Bach's Rescue Remedy in the dropper bottle. The recommmended dosage of 4 drops in a glass of water was not nearly enough, but my naturopathic doctor said that, unlike some "classic" homeopathic remedies, this (flower) remedy was safe to increase the dosage until it had good effect. (For myself, that amounts to the equivalent of a dropperful of the Rescue Remedy in either plain or spring water in the morning upon waking; sipping 4 more glasses throughout the day; and one last glass shortly before bed.) There are individual Bach Remedies (like Clematis for help focusing if I feel "spacy"; or Olive if I feel emotionally or physically exhausted) which I will add to the glass of Rescue Remedy.

    By the way, I am now using the Rescue Remedy for my two small dogs when there's a thunder storm. I use the Rescue Remedy in spray form, one spray into the mouth, and they calm right down without drowsiness or any other side effect. Great with night thunderstorms so that we all can get to sleep.

    One last thing I should mention is that I've starting using "Peter Gillman's Natural Vitality NATURAL CALM Ralaxing Magnesium Supplement" very last thing right before bed. It really helps me along with the Rescue Remedy to get some sleep.

    Light-at-the-end-of-the-tunnel.

    ReplyDelete
  60. sorry to hear your struggles.

    I have question about elavil. How elavil and alcohol are doing together. Have you ever tried drinking small amount alcohol with 10mg/day elavil?

    ReplyDelete
  61. Hi, I'm sorry to tell you that I don't have the information on Elavil and alcohol. I don't think I drank more than one drink while I was on Elavil. Probably would be best to ask your doctor.

    Thanks! Kate

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  62. HI Kate
    I have only been on Elavil (25mg), 1 month plus 3 days prescribed for tension headaches. I came down with a sore throat. I started taking OTC throat lozenges, which did not help. I Then got a horrible cough, so I stopped the Elavil, to take some stronger OTC cough syrup. There was my mistake. On this, the second day of no Elavil, I thought I was dying. I went to the Emergency room. I had hot flushes feelings from my upper body to my thighs, felt like my skin was burning. Terrible feelings of dying. Nothing seemed real, like a dream. As I write this, I am afarid to lie down. The emergency room doctor told me all these feelings are possibly due to me stopping the Elavil. After reading this and other online resources, I see it probabaly is. Thats how I found your blog. People taking Elavil should be made known of the withdrawl symptoms before starting it. I Believe that Jesus died for me. I need prayer. Thanks for spreading this news. Paul

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  63. Paul,

    I am so sorry you are going through this terrible thing. It is crazy that more people aren't aware of the withdrawal associated with Amitriptyline.

    Hang in there, it will get better! It takes a couple of months, but it gradually gets better a little bit every day. I pray that you will have a quick withdrawal process and the half-life of the Amitriptyline will be out of your system soon!

    Drink lots and lots of water and always have tissues handy (some get a constant runny nose). Remember that the paranoia and crazy feeling are not you!

    I pray for comfort and peace for you as you go through this and that your faith in the Lord will grow and strengthen through this!

    Love, Kate

    ReplyDelete
  64. Hi Kate.

    I have been on Amitriptyline for a year and 3 months for post-viral muscle and nerve pain. It worked very well for me, helped me get through a very sick period, helped me sleep, and numbed the pain (20mg). My Dr and I agreed that I would try and come off the drug by increasing it to 30mg for 1 month (September), back to 20 mg for 1 month (October), reduce to 10mg for 1 month (November) and then off it. I have had Inappropriate Sinus Tachycardia ever since my illness last year, and I have been back in the ER this October, and in to see the Cardiologist because I feel it has gotten worse. I didn't for one minute think it could be connected to the drug dosage changes, as they are such low doses in the first place. My Dr didn't seem concerned at all about withdrawal symptoms and didn't even warn me to look out for any. I have been feeling palpitations, rapid heart rate, nausea...all of which are pretty normal for me unfortunately, but not to this degree. Your blog has given me something to think about, and I will bring this up with my Dr the next time I see him.

    Thanks.

    ReplyDelete
  65. Good luck! Let your doctor know that the Amitriptyline has a long half-life. It takes a long time for it to flush out of your system. You can step down in 1 mg doses if the doctor will write you the appropriate prescriptions.

    I was never told about it either and obviously had a bad reaction. I pray that it will go more smoothly for you and you will be able to come off of it easily.

    Thanks! Kate

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  66. Hi Kate - I have been reading your blog as it came up when I googled elavil withdrawal symptoms. I have had the drippy nose thing for most of the withdrawal experience, but not my worst problem. I started elavil 25mg for fibromyalgia, supposed to help with sleeping. Never had aconstant in the sleeping, so decided after 9 years to get off elavil. I weaned through 6 months and have been off for 2 whole weeks. The drippy nose is about the same, but somehow my blood pressure had gone crazy. After a lifetime of low, it is now 150/68. I'm dizzy, feel like I drank too much and am a bit leery of driving. Have you heard this problem? Web sites do not seem to address this as a withdrawal symptom, just as a possible side effect. Through all the years of taking it, even the last 5 years at 100mg, never had anything but low blood pressure. It was so refreshing to be able to read other people's issues with it and know I'm not alone. Prayers for all who have posted here. Laurie

    ReplyDelete
  67. (response to post November 9) Hi Kate. While waiting for the results from the cardiologist I took it upon myself to start alternating 20 and 10 mg doses each day, rather than 10 every night. I must say I feel a bit better. My HR is still sky high, but runny nose and flu symptoms have eased. I will keep alternative each day for the week, then 10, 10, 20 the week after etc. I asked my pharmacist if they can do anything lower than 10mg and they said no??

    Thanks

    ReplyDelete
  68. Hi, thanks for this blog. I may be going through the same thing. And I have horrific dry mouth. To top it off, I've been taking benadryl almost every night because of the constant dripping. I'm sure this is not helping in the long run. I had a concussion 9 months ago and have been taking amitrip. the whole time. Anonymous (above my comment), you can cut your 10mg in half. That is what I am now doing. And I may even in a few weeks cut them into 1/4 pieces if needed. Hope to get off of it soon. Thanks again.

    ReplyDelete
  69. Anon,

    I'm sorry you are going through the terrible Amitrip withdrawal process. I pray it won't be too bad for you. Some have milder cases than others. Hang in there!

    -Kate

    Anon (from above this),

    I'm so sorry, I didn't see your comment before. As the other one said, yes you can cut in half. How have you been doing?

    -Kate

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  70. Dear Kate,

    I feel very compassionate about your whole situation and am amazed at how you are managing it.

    I am not a believer but, going through amitriptyline withdrawal at the moment am thinking about praying for help. The insomnia is deadly, I have a two year old to care for during the day.

    Maybe you know a prayer that can help me stay calm at night? After 2-3 hours of lying awake I get into a panic about the next day being so hard and cry. I was managing well but I am losing faith. My child wakes me during the night and I just cannot find sleep on some days (2-4 per week since withdrawal). I find myself feeling anger towards her and hate that feeling. It is unjust. But it isn't exactly helpful of course to be woken.

    Yet it is so good to read that others are having trouble too. I thought I was going bonkers!

    I am thinking my experience might be withdrawal. What do you think:

    I have been taking 25mg amitriptylne for 1,5 years now. It was prescribed for insomnia (really bad times). After about 8 months the insomnia returned, I found out that I was lacking iron, magnesium, vitamin b12 and my thyroid is "slow". I did something about these issues and my sleep was acceptable, mostly normal.

    Now I am tapering off the amitriptyline as I just don't want to take it any more. I started mid-September, gram for gram. After about 6 weeks I was down to 18grams and had a bad bad week of little sleep. I continued to taper as it got better again after iron infusions and then when after a total of 2,5 months I was down to 4 grams insomnia returned. I stopped tapering and have been at 4 grams for about 14 days. Sleep got better immediately.

    But now for about 5 days I am having REALLY bad nights. All of a sudden. My body wakes up in the middle of the night and just doesn't go back to sleep. Last night I awoke and my brain was full of loads of thoughts I couldn't grab, it was as if it was thinking for three people, a strange sensation. I was awake, my head was tired yet working, my body wanted to arch and stretch and move. It was horrible.

    Or I cannot find back to sleep after my child has woken me at 2am. That is deadly sometimes.

    Could this sleep disturbance come from the weaning? I was really on a mend and much much better, leading a normal life. The anxiety (not too bad with me) is on the mend, too, but now I am beginning to feel terrified again and cry at night.

    So glad to get off the amitriptyline someday. It kind of breaked me.

    All the best to everyone.
    Jo

    ReplyDelete
  71. Jo,

    My heart breaks for you. I'm so sorry you are having a tough time with this terrible withdrawal. I can't imagine going through it with a baby.

    From what I understand, Amitriptyline has a really long half-life. This means it recycles itself out of your system, by cutting in half and in half and in half. The process for Amitriptyline to recycle itself out is slower than most drugs. It weaves it's way into your brain, especially after taking it for so long.

    Also, (not that I'm an expert, but), you started the Amitrip for insomnia before, I wonder if this is just your insomnia coming back without the Amitrip to help you sleep?

    Maybe there is something more mild you can use to help you sleep. I would talk to your doctor about Melatonin and see if it's safe to use during your weaning process. Something more natural or more mild might help without being so tough to get off.

    Try creating a routine for yourself at night (yeah, I know – impossible with a 2 year old!). If you can take a warm bath or a warm shower and not eat a couple hours before bed, sometimes that helps me. I've tried a couple different pillows, thinking that might be the problem too. Just suggestions.

    If you are not a believer and aren't sure how to go about getting into prayer, I think I can help you get started. God loves you, all the time, no matter what. It's not what you do, but what you believe: not works, but faith. All you have to do is talk to Him. The good, the bad, the ugly.

    You don't need fancy words or special rituals, but you need honesty and sincerity. If you are pissed at Him, it's ok to tell Him that. If you don't know what to say, it's ok to tell Him that. If you are having a hard time getting started, pick up your phone and hold it to your ear, and pretend you are talking on the phone (that's what helped me feel less funny about it at first).

    It's only been 7 years since I've had Christ in my life and although I am going through these challenges, I know I'm not going through them alone. He may not calm the storm you are in, but He will hold you tightly through it until it's over.

    I pray that you will find peace from your anxiety and your insomnia. I pray that you will find a way through this. I pray that your daughter gives you little reasons to laugh and smile to remind you how precious she is.

    Jo, you can get through this! I will continue to pray for you and I hope that you keep me posted on how everything goes.

    Romans 5:6-8: “You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.” http://www.youversion.com/

    ReplyDelete
  72. Dear Kate,

    Thank you ever so much for your beautiful answer. And for guiding me to prayer, I will talk to Him in the night if I lie awake again.

    Deep down of course I am hoping it is not the insomnia returning. The amitriptyline stopped working about 6 months after I started using it, it was another 6 months until I found out that my thyroid might be at stake and that I was lacking several vitamins and minerals as well as iron.

    In the end, I will and can not know, similar to your not knowing what has caused your illness, I suppose...

    As the day moves on I realize that acceptance is probably the key to healing, too.

    Unfortunately I cannot get melatonin here ( I am in Germany ), but I will see what I can find over the counter.

    Funny you should say, I just switched over to another
    pillow this morning.

    It is tedious, as you know. I am in absolute awe of how you manage, I just wonder how you keep your hopes up high, is there a chance you will ever get better? I had never heard of your illness. Is it caused by an accident? I remember reading in your first post, that your head was bleeding?!

    I will keep you posted.

    Warm regards and thank you once again.

    Jo

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  73. Hi Jo,

    I have been wondering how you are doing. Have you seen any progress? Has anything worked for you? I pray that you will heal a little more every day and you will see relief soon.

    -Kate

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  74. Kate I have been on 75mg of amitriptylne for about 6 months, and a few days ago, I ran out, completely oblivious to the intense withdrawal symptoms it can cause. I have felt like absolute death for the past couple of days, with nausea, vomiting, dizziness, and body temperature changes being my biggest symptoms. Ive managed to drop 12 pounds in 3 days and have trouble walking now and have to creep slowly up the stairs because I feel so darn "drunk" as many of you have also noticed. I am so glad I saw your blog, because I was going about this as if I've had a stomach bug. I am getting my script refilled today and will resume my medication tonight, (not ready to completely withdraw yet) but I have a question for you or anyone else who might know the answer: how long after taking the meds again will I feel normal? Im hoping to return to regular life asap. Thanks, Annie

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  75. Annie,

    So sorry you had to go through this scary thing! I remember how horrible the withdrawal was and how crazy it makes you feel. I'm glad you are getting back on it. 75 mg is too much of a drop. I'm not sure how long it will take for you to regulate again after being back on it. I hope it won't take too long! Drink lots of water and get that moving through your system. When you are ready to go off the Amitriptyline make sure you do it slowly. Some doctors don't even know how bad it is, so you might have to advocate for yourself. They have Amitriptyline pills that go down to 1 mg. So you can go off it as slowly as you need to.

    If you don't mind, it would be good to know how long it took you to feel back to normal after going back on it. Could you please repost later and let us know how that went for you?

    I pray that the God of heaven and earth will help you get through this!

    Thanks,
    Kate

    ReplyDelete
    Replies
    1. Kate-
      After resuming 75 mg of the Amitriptyline, I was feeling better within a day, and completely normal after just two. It's slightly unsettling to know how dependent your brain and body can become on this medication, and the second your body has it again after a sudden break, you'll feel "normal" again. And I agree, some doctors don't get it. I discussed with my doctor how uncomfortable I was being essentially addicted to a drug I don't enjoy taking, and she brushed it off, telling me "oh thats not addiction!" If this isn't, I don't know what is. Thanks for your words of encouragement and this lovely site :)

      Delete
    2. Forgot to say that this is Annie.

      Delete
    3. Annie,

      I'm glad you are doing ok after getting back on the Amitriptyline. It can be unsettling to feel like you are so dependent on it. If it helps you, I guess there is no reason to worry unless you want to get off it.

      If you ever want to stop taking it, just step down as gradually as you can stand to. They even make it in 1mg doses. It might be expensive and time consuming, but it could be better than just stopping cold turkey.

      Good luck to you Annie, I wish you all the best.

      Kate

      Delete
  76. kate, how are you doing now? did you get better?

    ReplyDelete
  77. Anon,

    I'm still dealing with the concussion symptoms, but the Amitriptyline has been out of my system for a while. I don't suffer from the withdrawal it caused. How are you?

    Thanks!
    Kate

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  78. I have never posted on the internet, but ran across your page, Kate. I fell last February, 4 staples in head, now have PCS. Just saw a second neurologist at a large teaching hospital specializing in PCS. I had no symptoms for 7 days after I fell, not even a headache. Then it came on bad. I had every symptom. Headache, anxiety, fatigue, light/sound sensitivity, mood swings, speech problems, cognitive issues. Now, four months later, there are lingering symptoms keeping me from work, basically light and sound issues. I no longer can watch tv, listening to music, be in loud public places, etc. SO, back to the Elavil. The doctor thought by taking a small dose (10mg) it would speed things along. After I filled the scrip, I read about the side effects and found your page. My husband and I have decided I can wait the symptoms out, rather than risk side effects that could mask some of the PCS symptoms. At least I know what I am dealing with. Your page helped make that decision.
    Also, it sounds like some of the symptoms for some posters are from PCS. The symptoms can go away and be triggered later by fatigue or stress. Sometimes years later after having no symptoms.
    Thanks again.

    ReplyDelete
  79. Hi Anon,

    I'm so sorry about your fall that led you to where you are. It's tough boat we find ourselves in. I was started on that small dose of 10mg of Amitriptyline too in the beginning. It does help some people, but I would never go on it again. That said, I'm extremely sensitive to side effects of all meds, so make sure you are making the decision not to take it carefully.

    Good luck to you!
    Kate

    ReplyDelete
  80. Hi Kate

    Just finished reading a number of your post. I have had head pain for a year. I recently underwent a Temporal Artery Biopsy which came back neg. During the last year I have been treated for occitipal neuralgia. My doc was giving me nerve blocks in the back of my head, then after being in an auto accident in Feb and ended up with a concussion and whip he also begin Botox 2 days after the nerve blocks. Today he told me he just didn't know what else to do other than continue with the nerve blocks which helped somewhat. So today he decided to start me on Amitriptylin 25mg.

    Needless to say after reading many of the post I am nervous to say the least. At this point I really don't know what to do. The doc refused to give me pain meds because of addiction, but this seems to have the same problem. I am in such awful pain I really don't know where to turn at this point. I guess just having someone to talk to right now is what I really need.

    ReplyDelete
    Replies
    1. Anon,

      I'm sorry you are having such a tough struggle. Amitriptyline is the go to drug for concussion symptoms. Some people have no trouble at all with it, but I did and so did some others.

      Obviously you and your doctor have to make the best choice for you. I'm sorry you don't feel confident in your doctor. I encourage you to find one you feel more confident with. I have seen many over the years.

      Praying you find some answers!

      Kate

      Delete
    2. Kate...I have all the confidence in the world in my doc. He did tell me there were side affects to this med., but I didn't ask what. Sometimes it's easier to research for yourself.

      I begin the med tonight so will keep you posted.


      Delete
    3. Hi Kate...well I just could not get up the nerve to start this med. I did talk with my doc last night and disussed all the side affects I have been reading about. HIs comment was that 25mg is a low dose and he did not feel I would have these serious side affects.

      I have decided to make a trip to Cleveland Clinic and he was very supported of this idea. However, in the mean time can anyone give me info on the low 25mg symptoms they may have or are experiencing.

      Thanks for your help..

      Delete
    4. Anon,

      The side effects didn't come for me while I was on the Amitrip, but after I stopped it. I didn't have many side effects while I was on it at all. When I stopped there was a crazy withdrawal. That is what this part of my blog is about.

      Good luck!
      Kate

      Delete
    5. Hi Kate...Well it was another sleepless night for me. I still do not have the courage to start the Amitrip, I just can't do it. It seems like it is just one bad thing swapped for another. My husband of 15 yrs told me two weeks ago gthat I looked like"walking death". Nice compliment from your husband.We were supposed to leave today on a trip but I told him I was not going, so he went by himself.

      I know the lord watches over us in both good and bad times, and we are never given more than we can handle. I pray all the time that things will improve for me and I know that he is listening. Just need a little more help.

      As I sit here at 8:10am my husband is gone and I am crying. I feel so desperately lost.

      Thanks for listening!

      Delete
    6. Hey, I'm sorry you are having such a tough struggle. I'm sorry you feel lost and alone. You are right that the Lord is there for you.

      Hang in there... I'm sure it's hard for your husband to know what to say, but I'm sure he still loves you and is trying.

      I know it's hard, but the Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love. He will rejoice over you with singing!!! Zephaniah 3:17

      Kate

      Delete
    7. kate thank you for your loving words. My husband should have said nothing as compared to what he did say. Once those words are out you can never take them back.
      How are you feeling. Sounds like you have been through a lot. I pray that your pain is much better and that no additional surgery will be needed.

      Delete
    8. How are things going for you now?
      -Kate

      Delete
  81. Hi Kate
    I am happy to have stumbled on your blog. I have been on 25mg of Elavil for 10 years and I am only 24 years old. I tried to ween off the medication with 10mg and have never felt so terrible and afraid in my life. I thought I was going crazy. I started this medication because of chronic back pain and in withdrawal I ended up with pain in ALL of my joints. When I returned to the doctor and asked if these were withdrawal symptoms or the amount of pain I am in without medication she said It's probably just how much pain I am in. That scared me even more. Reading your blog I can see that there are withdrawal symptoms involved with coming off this drug.
    I am trying for my second time to ween off of it, but am already feeling really foggy after two days. I am supposed to start taking Cymbalta after a week of weaning off Elavil. But I am very fearful of what that will look like for me. I dont really have 9 weeks to deal with withdrawal symptoms, and ideally I would like to be on no medication.
    Thanks for taking the time to write this blog. Definitely makes me feel a lot less alone with this.
    - Danielle S.

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  82. Hello Danielle, I was on Elavil for more than 10 years also for headaches and depression. I decided in 2010 to get off the drug because of side effects of becoming overweight, excessive sweating and worse headaches and dry mouth. The withdrawal was really bad for about 2 weeks and then they decreased all but 1. I still have a chronic drippy nose. But after all this time I realized that the runny nose is also caused by other anticholinergics drugs that I'm taking. But we are a selected few with runny nose symptoms. Most people do not have that. As far as Cymbalta goes I know nothing about it. But what I believe is the fewer the drugs the better. I'm still battling several psych drugs, and as long as I'm on them the side effects and tolerance withdrawal will continue. I'm sorry I don't have a specific advice for you, but if you can put up with 2-3 weeks of bad withdrawal then you will feel better than you do now. Please talk to your doctor first as I'm not a doctor. Good luck and God Bless,
    Roger

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    1. Hi Kate:
      I just had to read about someone who came off of amitriptyline and actually RECOVERED from the withdrawal. Without just going on a lot of other drugs instead.
      I was on amitriptyline for almost 20 years, only 10mg a day. It was for chronique fatigue syndrome and fibromyalgia. I didn't realize that most of the horrendous problems I was coping with came from the drug, not the illness.
      The side effects finally got so indescribably bad that I went in the ambulance to the hospital, and the doctor just said: "Go home and go off it." The nurse wanted him to check me into the hospital, but he said they had no facilities to help me, that I had to tough it out at home. No suggestion of SLOWLY going off it. So as per his instructions, I went off cold turkey.
      There are absolutely no words to describe how terrible it has been. Friends and family and our Creator have helped me to hang on.
      It's been two and a half years, and I'm still battling the symptoms. Some days, like today, are very difficult again. But many days are so much better. I actually want to be alive now. Most of the time, anyway.
      I really like what you said about Amitriptyline having a very long half life, that it cuts itself in half and in half and in half. And since I had been taking it so long, that's why it is taking so long to get out of my system. That gives me hope. I need the light at the end of the tunnel!
      I couldn't even look up anything about it on the internet before, because it was all I could do to hang on.
      Today, after two and a half years, I finally looked up what others were going through. And yours is the ONLY place where I found someone who had got through it and didn't just switch to another drug.
      I can't take any medication, not even pain killers. My body is too sensitized by taking it for so long. I'm allergic to almost everything man-made - soap, perfume, oil, gas, fabric, you name it. Amitriptyline did this to me. There are only a few foods I can eat. Meat with no seasoning except seasalt, carrots, cauliflower, broccolli (all cooked), wheat, and oats.
      I'm coping with a long list of physical as well as emotional problems caused by this drug. Every single symptom that has been mentioned on this blog, plus some that haven't.
      BUT I'M GETTING THERE!!!!!!!!!!!!!!!
      Only someone who has been through this knows what it is like.
      Thank you so much for this blog.
      Penny

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  83. Hi Kate:
    For others going through this - there are some things we all can do to help our brains heal. Walk, walk, walk. It has a tranquilizing effect, helping the brain to produce those chemicals that the amitriptyline has been producing for it. If you can walk where there are trees and grass, even better.
    Drink TONS of water. You need it!
    SMILE!!!!! The physical action of pushing your face muscles into a smile triggers your brain to produce those calming chemicals. The first bit of relief I got was after walking and walking and smiling and smiling for half an hour, then it finally worked for a few seconds. Just knowing there was something I could do that would give a little relief was wonderful. I still keep reminding myself to SMILE!
    Talk to other people. Be with other people. Hug. Laugh. Help others. All these things also stimulate the brain to produce the right chemicals. It will help. There is an end to this.
    I go to a counselor for the drug withdrawal, they never had to deal with such a long-term case before, but judging by how it'g going she thought it would be three to five years to get out of my system. When I first started going, only three months into the withdrawal, she didn't think I would survive. Of course she didn't tell me that at the time! She just kept encouraging me that there is an end, it WON'T be forever. It WILL get better.
    And it does. Slowly, but surely. I don't look at yesterday to compare, I look at six months ago, a year ago. And I am so much better! I'm going to hang on and get all the way.
    Knowing that other people have done it really, really, really helps. And I really appreciated the part about the long half-life, because that helps me understand why it's taking so long.
    My best advice to others is DON'T GO COLD TURKEY. I have a friend who saw what this was doing to me, who had been on it the same ammount and time as me. She cut her down slowly. Took about six months to wean herself from 10mg to nothing. Because she went so slowly she got NO withdrawal! If only I had known! But we can't go backwards, we can only go forwards.
    Thank you so much for this blog.
    Penny

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    1. Penny,

      What an incredible story! I can't imagine going through what you went through for so long! I'm so grateful to God for you, and for the strength He gave you to get through this. It's truly amazing.

      Thank you for sharing your story. I'm sure your experience with Amitriptyline and it's withdrawal will help so many people. The half-life thing was so encouraging to me when I found out about it too. It helps with the patience of it all. It helps to know that with every drop of water you drink and good food you put in your body, it's slowly dissipating out of you.

      I'm glad you are seeing a counselor. I think it's so important to have someone to talk to that is a neutral party who can help you talk through things and give the right advice. I'm glad for your positive attitude, I think it's so important to have that.

      It was so infuriating to me that there was no information on Amitrip withdrawal anywhere. My doctor didn't know about it either. I think we need to spread the word and I'm glad that my little blog is being used by God for that purpose.

      Thanks again, Penny, and good luck to you on your journey. I'm sure it will be filled with highs and lows. Please keep us posted on your progress when you can, so that others can see what the path of getting off a longer usage will be like.

      “Faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

      -Kate

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    2. Kate:
      Thanks so much for your kind words. It really helps me to know that someone understands some of what this has been like.

      I'll keep you posted. Keep reminding others who are going through this that IT DOES GET BETTER! It is not forever. Even though I still have quite a ways to go, I can do so much more than when I was on the drug. I can think again! I can walk! And time does go by - the next two and a half years will go past too. They will be a lot easier that the last ones.

      Thanks again for your kind words and helpful, encouraging blog.
      Penny

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    3. Thanks Penny - I hope you have a good week!
      -Kate

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  84. I wish I had found this page before I stopped taking amitriptylene. Last week my doctor told me to stop taking it. She didn't say to wean off of it or that I would experience withdrawal. The last few days I have felt so sick that I thought I was pregnant, so I bought a test, which came back negative. I figured I would wait a week or so and test again. Then it occurred to me that maybe it was stopping the medicine that was making me feel so nauseated. I did some googling and am now convinced that is what my problem is! I have a few cold symptoms too, but those are minor compared to the nausea. Did you experience any nausea and if so, how long? I was taking 50 mg, and now I'm not sure if I should continue cold turkey or if I should try taking half a pill for a while & stepping down slowly from there? Thank you for your time. God bless, Maureen

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    1. This comment has been removed by the author.

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    2. Hey Maureen,

      I'm so sorry you are going through this. It's not fun! I think it's a judgment call you'll have to make to decide whether to continue cold turkey or not.

      If you have a doctor that can work with you to step down in low doses, you might want to think about doing that. I think you might have more success coming off it that way.

      The withdrawal effects can vary based on how long you were on it and which dose. I was on it for a year before I decided to go off it, and my withdrawal lasted almost 2 months.

      Good luck to you! Please let me know how it goes for you.

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  85. Dear Kate
    This is the second time I have read all the comments here. You are correct, the physicians are truly unaware of how difficult coming off of Elavil (amitriptyline) can be. I was prescribed this medication after 4 months of chemo treatments caused severe neuropathies in my hands and feet. It was a huge help, and I will never regret starting it as I am not certain that I would have continued the chemo treatments. Of course, my liver hated all the medications, so after all my treatments were finsihed I suggested to my Oncologist that I get off any extraneous medications and he agreed, unaware, I am certain, of how difficult it could be.

    I had been on 25mg each evening for 14 months, so I began to read the internet and wean down, taking 25 mg tablets every other night. By week two I had lost my appetite, by week 3 I dropped to every 3rd day and had lost my energy, so at the end of week 4, I just stopped "cold turkey" to get it over with and out of my system and then every day became worse. No appetite, almost impossible to get out of bed and out for my daily 2 mile walk. But usually by noon, or 2 pm and then eventually later each day, I got my second wind and was perky and could eat. After 3 weeks of "cold turkey" mode, I had lost 13# (okay, that was a nice side effect?), but had no energy, had continual bouts of heart palpatations, tremors,(frankly I was now feeling worse than anytime during chemo)and finally I found that each morning was starting earlier, say 3am!!

    I called drug withdrawal clinics for advice (no one would talk with me since it wasn't a narcotic withdrawal problem), my physicians, I even managed a walk-in appointment with a psychiatrist, I culled the internet for nutrition ideas, meditation guides, yoga and self-help . After 62 days (32 days cold turkey)and much soul-searching, I caved and restarted the elavil. In one dose, I was almost normal again.....one dose! Isn't that sad......I lost nearly 62 days of feeling good and being happy by trying to withdraw, and let me say that I am certain that I will probably die before I try to get off of it again. I am 63, I have 9 more years of being on anastrozole (arimidex- a cancer hormonal therapy) and so I figure I have 9 more years on the elavil as well. By then, I doubt I will have the courage to try to get off of it. Oh well.

    No, the physicians clearly had no idea how to help me, their only response was to go back on it. And I was not as strong as you, by 8 weeks I was such a basket case and a burden on my spouse, and I am disappointed in myself that I could not get off of it, but I have made peace with the decision and know that I am doing better right now being on it than when I was off of it. I only hope that my story will not discourage others who want to get off elavil, and it seems that my physicians are not concerned that I am clearly dependent on it at present. Should I go off of it again, it would be in very tiny incremental decreases, say 2.5mg less every 2-4 weeks.

    Sorry for this tome, thank you for the opportunity for me to share this journey with elavil.
    Linda

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    1. Here is a video on how to titrate off of drugs. A very slow process so you don't feel all the symptoms of withdrawal. There are many videos out there on titration. It may help some of you on slow withdrawal from amitriptyline/Elavil.

      http://www.youtube.com/watch?v=EeMz6NcPqQ0

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  86. I have been on elavil for years....they were prescribed because I have insomnia...75mg every night, sometimes I take two if I can't get to sleep. YIKES!
    How should I begin to get off of them?....I'm scared after reading all your reports.

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    1. Anon,

      Not everyone has the withdrawal issues, I believe. It is a decision you and your doctor should make together to decide if you should continue or try to wean yourself off and try something else.

      If you do decide to get off the Elavil, just go as slow as you can. They are available even in 1mg doses. Be careful and patient and it helps to be aware that the things that are happening to you during the withdrawal are from that and not other issues in your life.

      Good luck, keep me posted,
      Kate

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  87. Thank you Kate, I am going to lower the dosage little by little....I have read the withdrawal issues and understand that I will have some. I appreciate your insight to this problem...a lot of us are unaware of what goes on when you stop taking any kind of drug. Thanks again for caring.

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  88. flstfrider Dec 13 2010

    Thanks for the post on this page, I haven't found much on the web about the issue of coming off Amitriptyline (Elavil).

    I had been on 100mg for 10 years for insomnia but had reduced that dosage to 20mg over that time. I decided to come off in January 2014 as it never really produced a stable sleep pattern. I didn't notice much effect in the first week or so, but after that I began to feel awful. As the withdrawal effect had not been noticeable before I had assumed that I had been lucky and not suffered any problems - I had forgotten that I was not taking it. I began to stop work (self-employed) and became irritable and depressed. Last night I was desperate to get to sleep and so I took 10mg. I feel deeply asleep for 6 hours and now feel 'back to normal'. Unfortunately this seems to mean one of two things for me:

    1) I really need Amitriptyline to get to sleep even though it doesn't produce a stable sleep pattern;
    2) I am still going through the withdrawal.

    Most people on here seem to say that they have finished withdrawal within a 2-3 weeks. It has been a month for me now.

    Does anyone think that means that my withdrawal is complete or does it take longer for some people? Do the symptoms of disturbed sleep, tiredness, extreme irritability, lack of motivation and extreme negativity ring bells as withdrawal symptoms for other people?

    Thanks for any comments!

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    1. Hi Gavin,
      Amitriptyline is a tough drug to come off of. It took months before I was free from the withdrawal and I was only on it for 8 months. It has a long half life, so it takes a while to recycle out of your system.
      People have had success with stepping down gradually. Cutting your dose down slowly until you are able to wean off of it. Be careful, because it involves itself in so many different systems in your body.
      Many doctors don't understand or scoff at this,but advocate for yourself. See if you can get smaller doses every month until you can be off of it. Take your time and move slowly if you want to get off it.
      Good luck!!!
      Kate

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  89. Anyone still post here ? I'm on 150 mg. Been on it for 15 years. I want to wean off. I expect to be miserable. I'm reading all the posts. Anyone still here ?
    Terri :)

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    1. Hey Terri,

      Good luck to you! My advice is just wean slowly. Take your time and just be aware that the stuff you are feeling is not permanent. Amitriptyline has a very long half life, so it takes a while to recycle itself out of your body. If you can wean in small doses, a little at a time, it might be easier. Keep me posted on how it goes for you.
      -Kate

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  90. Hi Kate,

    I hope you are still here! I found your blog this morning while doing an internet search. I almost cried when I realized that you are also a Christian! I have chronic, severe neck pain and was put on several medications a couple of years ago. One of them was Flexeril, a muscle relaxant intended only for short term use! Well, it started to cause me some concerning side effects with my heart which I mentioned to my NP (who prescribed all of the meds) and she blew it off. I decided since it didn't seem like the Flexeril was doing anything to help, I would just stop taking it because of the side effects. I had NO IDEA that Flexeril is almost identical in chemical structure to Amytriptilene!! I went into severe withdrawal and seriously almost died because we had no idea why I was so sick. In a moment of clarity it came to me that it might have something to do with going off the Flexeril and had my husband google it and sure enough....

    So, to make a LONG story short, that was January of this year. I was on 10 mg 3X/day and ended up having to go back on half the dose to get out of withdrawal, which was a total guess on my NP's part. During the withdrawal, I inadvertently went off of the one 10 mg pill of Valium I was taking at night also. I went back on 1/2 that dose as well. The absolute worst symptom of the withdrawal was horrible dizziness that turned into vertigo and blacking out. Over the last 10 months, I have SLOWLY come off of the 5 mg of Valium, but I am still on the Flexeril at 15mg/day, which is like still being on Amytriptilene - now for 2 years. Every single day I am still dizzy. I have tried multiple natural things to help this, including fish oil, taurine, NAC, Glutamine, a multi-vitamin. I tried "the road back" program and his supplements and NOTHING has touched the dizziness! I want so badly to get off the rest of the Flexeril (and also a Butrans pain patch) but I am scared to death that this dizziness will get worse and never leave me.

    I'm writing in hopes that you or someone else who sees this will have experience with how to help the dizziness caused by Amytriptilene withdrawal since that is essentially what I am going through. I know that something happened to my brain in that whole withdrawal mess and I am praying and praying for answers about how I can naturally help it recover. Any insight you have would be so appreciated, and I am so glad you thought to blog about your experiences and share hope here on your blog.

    Bless you,
    Stephanie

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