Gabapentin withdrawal effects worsening

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i need help here. I have been tapering off of the Gabapentin but the withdrawal effects keep getting worse the lower I go. I am now at 100mg and have been so for 6 weeks. The itching/prickling in my arms and face just seems to get worse. I still wake up every morning and have waves and waves of hear on my face and arms which lasts for hours. I am on estrogen and progesterone for hot flashes. I even doubled up on that but with no change to these morning heat waves. I am beside myself. How long does it take for the body to reset itself???? I am supposed to be going away in two weeks but can't imagine functioning like this . I have tied magnesium and it has not made any difference. Any help would be appreciated. 

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  • Posted

    Hi Lynn how much were you taking before, you might be tapering off too fast.

    apparently there is a video on utube about tapering off gambepentin..see if you can find it and type in here and you will get lots of input..sometimes you have to go back up and taper more slowly.......how long were you on it ?

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    • Posted

      Thanks Brenda

      Ok I started a year ago and went up to 900 over a month ( up 300 every 10 days)

      They asked me to go up to 1200 but it made me too doped up so cut back to 900 but I was still dizzy and couldn't function. I went into the hospital because I couldn't eat and lost 10 pounds. I wanted off the drug so I said I was on 600 and not the 900 I was really on so they dropped me to 300. That was in December.? I went to 400 and then to down 100 each week. The mornings waking up with the waves of heat started in the hospital and has never gone away. When I got down to 300 in January I started to get the skin crawling/ itchy feeling but continued to decrease it down to 100. Felt so awful I went back up to 400 then 600. After a month at 600 ion longer had the skin crawling but still had the morning waves of heat. That's when I tried doubling the estrogen but there was no change so I knew it had to be the gabapentin withdrawal. I went down to 500 and then 400 over the next couple of weeks and then the skin crawling started again. I decided to percevere and went down to 300 in march. I stayed there for 3 weeks then down to 200. Felt awful and after 2 weeks went back to 300 again. Didn't feel any better so back to 200 May 20th. Stayed at 200 for 3 weeks and went down to 100 June 14th. I guess my body has never really recovered from the first initial drop in December so I have been in withdrawal since then. Sorry for the long response. I have since read that you should only drop 100 at a time and stay at that level until you don't have any withdrawal. Wish I had never started this drug. I will take a look at you tube. Thanks again for your response I really appreciate it.

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    • Posted

      Hi Lynn you have gone down way to much too soon......your doctor should have guided you (but then they dont seem to know much i find) type into this site going off gambepentin and you will see alot of posts of people on how they did it...i took 4 pills that was it....100 mg for 4 days and was so sick i stopped thinking nothing would happen....been sick now for 3 weeks...seriously research this. get back onto a dose you are comfortable with and then learn how to ween down realllllly slowly....this is an epeleptic seizure drug...it affects your central nervous system and brain chemistry...you cant do what you are doing.....that is why you are feeling so badly...go on utube and look up going off gambepentin i think there is a site or two that tells you how and you should consult with your doctor as well
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    • Posted

      Thanks again Brenda, I really appreciate all of your input. I know I need to go back on a higher dose but after being at 100 for 6 weeks I am reluctant to do it. I keep hoping things will improve. I have read that it could take months or up to a year for your body to recover. You are right about the doctors not knowing how bad the withdrawal is or how to do it properly. I was put on gabapentin for headaches and it didn't help so I figured and the doctors figured that I should go off of it. My head has been bad as well and I am not sure how much is my usual head and how much is the withdrawal. I did have a quick look at you tube yesterday but will take a better look today. I may go back up to 300 tonight for a while and see how it goes.

      Thanks again. I hope you feel better soon🤞

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    • Posted

      It is so difficult for one to know if it it only the gabapentin that is causing your side effects.  While  there are many  adverse effects with gaba. , if you are taking any other medications beside that.....there are also cross reactions between drugs  that could be adding to the problem.  Even the estrogen and progestin can cause their  own side effects. add gabapentin to that and .......well...........you can see what I mean. ALL drugs have their negative side effects, and all drugs are going to impair  brain function in some way while the are "helping" you so to speak...... even simple pain killers like ibuprofen when taken in high doses are not good. I'm not a professional but I have alot of experience in taking and using muliple prescribed drugs at the same time.......I no longer use gabapentin or any major drugs, except, I still use  zolpidem (sleeping pill)  daily 5 mg or 10 mg for  sleep. I'm sure it's affecting me but does not seem to be problematic at this time. It's just something to consider what I just said.......so maybe it is not entirely gabapentins fault........maybe other things as well  ?

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  • Posted

    Hi, Lynn! I have been om 1800 for almost 3 years. I tried as you to taper down, but failed because I did it too fast. Now I am doing it really slow, and for the first time it is working. I am down to 700 mg, and no withdrawal symptoms. (exept a little fatigue) Your tapering regime seems a bit chaotic. The rule of thumb is 5 % every month. I know, it`s slow, but some say it`s harder to get off Gaba than heroin. My suggestion to you, is to get back on a comfortable dosage, the start again from there. Anything is better than the hell you are living trough right now.  There is a website witch is called "Nevrontin, the road back." Check it out. Good luck!

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    • Posted

      Thanks for your input. Yes, my tapering had been very erratic, I am probably going to go back to 300 for a while and see if that helps, I did look at the site you were talking about and even ordered some of their capsules but they did nothing for me and no one responded to my emails after I spent over $100 on their products. I have read that 100 a month is a good place to start, unfortunately I read that well after I had tried to get off of this stuff. No one tells you how addicting this stuff is and how your body develops an addiction to it. I guess everyone is different. I can't believe how some people were able to stop and have no withdrawal effects. Mind you, if there are side effects to drugs, I usually get them!

      Thanks again for your input, I really appreciate it.

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    • Posted

      I've had  a lot of expirence with Gaba. now I am free of it since December 2016...more than  7 months ago.  I feel like a new person sinced then. I got my life back ! I have no lasting after effects. I had been taking it for 4 years at a dose of about 900 to 1200 per day for RLS/and or neuropathy. I had numerous adverse side effects, dizzininess, headaches and  balance problems being the worst. It took me over 4 months of tapering down to finally be gaba. free. Yes it did seem like the last 100 mg/ was the hardest to get down to nothing. Doctors dont help. They are notoriously ignorant of the process of taping down and mostly it seems they  can not adivse you properly...thats my experience. So here is how I did it during the last 100 mg/ down to nothing. Everyone seems to be different . You have to monitor how the withdrawal effects are yourself and adjust accordingly up or down on the dosages. For instance, once I got to 100 mg daily, I started I stayed on that for maybe 2 weeks, then started taking 50  mg / per day for maybe 2 weeks more. all the while montoring how I felt. You will always get withdrawal symptoms because your brain is so used to it. Anyhow , while down at 50 mg/day, some eays I would skip a day between the 50 mg.  If I felt bad, or withdrawal seemed worse, I would take 50 mg/day for  2 or 3 days straigt again. So after maybe 3 weeks of 50 mg/day. I split the dose down to 25 mg/per day. And took that for a week or two...still monitoring how I felt.  If I felt worse I would take maybe 50 mg, the next day, but would still contiue mostly 25 mg/day......then I started  skipping to 25 mg/ every 2 days....for a weeks or two........slowly....slowly......slowly.......then finally I split down to 12 mg/ a day for maybe another week or two....still monitoring...still adjusting if needed........until finally I was able to quit taking completely....and finally no more side effects...........the bottom line is ...it is better to go  as slow as possible than to quickly.............So there is no set formula....you have to figure the tapering process accordingly to your own body.......GOOD LUCK.  

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    • Posted

      Hey thanks for directing me to  look at links on-line. I have not looked  at this website you recommended yet. B ut then did  do a a youtube search on gabapentin or neurontin and WOW !  very revealing.....my own experience testifies to the truth of that drug's danger !  

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    • Posted

      Thanks Jim for your reply. I know that everyone is

      different and everyone reacts differently to drugs. I am pretty sure the morning waves of heat and

      burning are due to the gabapentin withdrawal because I had them before when I was on gabapentin the first time, only it didn't happen until I went down from 300mg to 0. When I went back up to 300, they disappeared. That was over a year ago. Then after a month I went to 200 for a week, then 100 for a week and stopped with no withdrawals after that. I wasn't on it as long that time so my body didn't develop the same need for the drug as this time. I am into week 7 at 100 mg. The first time I was on it and went off, I didn't have the itchy prickly burning in my face and arms but this time I do. Since that sensation went away when I went back up to 600 for a month and didn't come back until I went down to 400 mg I am pretty sure that is withdrawal too. I know now that I came down too quickly so my body has been in a constant state of withdrawal since December. I keep hoping my body will adjust to the 100mg but so far it hasn't. I am supposed to go away in two weeks so not sure if I should go higher again or try and stick this out. I know people say it could take months to a year for your body to be able to function without this horrible stuff. Doctors don't seem to understand the problems coming off of it. I wish I had done more research before I tried to come off of it or better yet, never started!

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    • Posted

      Something is a bit confusing to me as you told it. You said you went off it completely for a while and had no withdrawal in your previous post. You went ( a year ago you said) from what you were on down to 300, then down to 200 for a week , then down to 100 for a week then stopped with no withdrawals. Why then did you start back again  if there were no more withdrawals symptoms ? Also if you  have been on  100 mg/day since December  2016......withdrawal  would not seem to be a probelm any more....that is over 7 months ago.  I had tapered from a high dose over a period of 4 to 5 months and I also Had my last dose in December 2016.........I have been feeling good ever since.........however since you are still on 100 mg/per day...... since December ?.......it does not make since anymore for you to increase again..........the up/down cycle will just keep going.  That's why my suspicion is that it is not just  the Gaba. Are you taking any other medicationas at all.....I mean anything ? And still.......you will eventually have to taper even further off Gaba. to ever get free of it..........yes it is a  "long" process and I guess people are going to vary on the times.........but is still worth it when you finally completely are gaba-free......very best of luck to you.

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    • Posted

      Sorry for the confusion. I was put back on the gabapentin by another doctor who wanted me to try it again for headaches. I was on 900 last December but I was really dizzy and sick and lost weight so I was told to get off the gabapentin as it hadn't helped the headaches. They cut me back too much too quickly and the withdrawal symptoms started so I went back up to 600 for a while which got rid of the itchy/ skin crawling but not the heat and burning in the mornings. That has been there since the original drop in December. I have only been on 100 for 7 weeks, not months. I am going to try and stay at that amount until I see my doctor in a few weeks. Eventually my body will get used to functioning without the drug, but sooner rather than later would be nice. Thanks for the encouragement .

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    • Posted

      Jimbourg how did you go to 50, 25, 12?

      My pills are capsules, they don't divide. 

      Are yours tablets?

      I thought they only came in capsules 

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  • Posted

    Lynn did things improve for you. I got down to 100mg then stopped after a week but had terrible insomnia. Could not function.  So I've started 100mg yesterday but also threw in some Valium out of desperation so not sure if 100mg is enough to crack the insomnia. If not I'll go back to 200 and get off more slowly. This is a really terrible drug. I don't understand how Drs prescribe it so liberally without warning about this withdrawal issue. 

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