Gabapentin Withdrawal Horror

Mark please be very careful with those two drugs. Using them together can cause a dangerous drop in your respiratory system, i.e. stopping your breathing. There are serious warnings on the meds in both the UK and now in the US. Also, paradoxically, gab can increase pain at times. If you're not taking at the proper times inter-dose withdrawals can increase pain.

It's best to find other methods to control pain, as difficult at that may seem. Good luck.

That sucks, but don't get discouraged by the doctors who don't believe you have pain. I believe you have pain. I don't know exactly what's going on with you, but I went through a lot of doctors saying nothing is wrong. I had one doctor tell me (a good doctor) that just because someone has a university degree it does not make them know what best for you. You know if their advice ( because that is all it is, even if they act as if it is the only option) is right for you. I don't know exactly what you are going through, but I can tell you a bit about my experience. As a kid I had constant pain for about 7 years, it ranged from 4/10 to 10/10, I saw a ton of specialists and they told me I was healthy. Luckily, the children's hospital I went to had a chronic pain clinic. It was amazing to have appointment with 7 medical professionals at one time talk and figure out together what is could help. I learned was that one fo the first times chronic pain was seen as an illness was when soldiers had limbs amputated and they still had pain where the limb used to be. Pretty messed up. Doctors have only been acknowledging that children can have chronic pain for about 25 years. This was terrifying as a kid, because very little research had gone into the very thing that made my life hell. Also, doctors are taught to find the problem and fix it, but chronic pain is so much more because they do not understand why there is a bad connection from the brain to the nerves. As people who are supposed to have all the answers, some of them dismiss it as solely psychological, which is very dangerous because it degrades mental health. I dealt with depression and anxiety because who wouldn't? My body was going through hell and the very people I put my trust in disregard mt pain, how can that not make a person depressed and/or anxious? Mental health is so important and should not be used as a scape goat. Chronic pain is something that is not fatal, and very much misunderstood. It takes the work of multiple doctors and medical professionals to get through it, and is best when they are working together. Do not settle for second best, you deserve to have proper doctors, and it may take a great deal of work, but the pain can get better. Keep in mind, you know your body the best, if something feels wrong you have the power to not take their advice. You are worth the fight, and a proper doctor will help you to get better. Trust your gut, ask as many questions as you need to ask, and remember that it is a fight well worth it because you are worth the fight.

don't know I have a few years left maybe I stop the oxycodone thanks very much for your help

Joseph, yes these medications can cause serious side effects and withdrawal problems but you can safely and slowly taper from them. Support groups (as most doctors are totally clueless) recommend getting off one at a time. It's OK that you went back on the gab, within two weeks you can usually safely reinstate the drug. NOW you can start to research support groups, either here, on FB or online. The recommendation for gab and benzoids is 10% or less over 4 weeks or more. I personally take 3 months to decrease a dose of gab 100 mg/day. So, if you're on 900 mg/day, I'm assuming you're taking 300 mgs. 3 times a day. When you feel ready and are more stabilized, using 100 mg pills (ask for a prescription with a mix of 300 and 100 pills) drop ONE of the doses by 100 mg. i.e. 900 am 800 5-6 hours later and your last dose 900. Then 4 weeks or longer later, drop to 800, 800 and 900, continuing that schedule. Your CNS and brain are affected by these meds, as gab is actually a seizure medication but healing and recovery can and WILL occur.

I can't tell you what your withdrawal will be like, we all vary, but the more carefully and slower that you go, the easier it will be. I was on 2700 mg 3 years ago, and have now been off for 9 days after tapering very slowly. Yes, there were hard times, but I'm so much better now. I realize the body can take months or longer to heal but it WILL heal.

Joseph, So sorry! I've heard your story so many times on the facebook gabapentin groups and benzobuddies and it is always so disheartening. So many people get put on gabapentin to get off of a benzodiazepine like clonazepam and so many people express their distress over their newest medication problem that has now complicated the old one. I agree with the advice and encouragement you've already been given. You are not alone. It is best to taper 1 med at a time. I tend to advise a more pure Ashton Manual taper. , It is appropriate for tapering of clonazepam or gabapentin. The rule of thumb advised by the Ashton Manual is no more than a 10% drop every 2 weeks or more. When you get to the lower doses, the drug has more efficacy, so many only taper 5%. Some can go faster. Some need to go slower. But if you keep your taper slow and don't try to take big jumps, you can save yourself some of the worst suffering. Regarding gabapentin, it is important to take 3 (or 4, but most take 3) even/equal doses since the half-life of gabapentin is 5-7 hours and many who try to drop a pill or go to taking it 2x/day or 1x/day start to develop inter-dose withdrawal. There is liquid gabapentin available for smaller amounts or amounts that are less than what a pill would be. We all understand. I won't tell you my story except to say that I also had no warning about the dangers of the drug either and my experience was horrific. I also understand the severe burning one gets from a reaction to the drug. I've been off for 2.5 years and though at one time I couldn't imagine ever feeling good again, I now enjoy my life. Things will get better for you too. Hang in there. I hope you can find some suppport with friends or online groups. You can do it! Best wishes.

Linda thank you for mentioning liquid gab, I forgot to include that. Titration is another option. Did Dr. Ashton really suggest drops only 2 weeks apart? I highly respect the work shes done but that was way too fast for me.

Yes, that seemed to be the average, though when I read the manual, it seemed to indicate that some people could even do anwhere from 1-2 weeks -- but 2 weeks is usually what is considered the least that is safe. I always recommend AT LEAST 2 weeks OR MORE. I have been off gabapentin for 2.5 years and had 3 different situations when getting off 3 different times -- one was positive, 2 were negative, but am currently tapering Cymbalta (my only other psych med). I hold anywhere from 2-4 weeks before a dose change and am down from 175 beads to 95 with no real problems. As you know, some can go faster and some need to go slower. I never rush it however and when I feel I'm getting some extra surges in anxiety, heart palpitations, or hot flashes, I wait until I'm sure everything has settled before dropping again. I've been through enough withdrawal in my life and will go as slow as necessary to make it easy on myself. I am a believer that there's no rush when it comes to tapering, so if 4 weeks or even more was best for you, it's great that you found your body's timetable.

why did you come off gabapentin ? I have been it for 5 months 2800mg a day the first few months I had very little pain now I have much more not sure what to do it's back by 50 % I have emphysema stage 2 not nice cant breath and in pain I cant walk far my legs are so painful I asked for government help iam not sick enough god only if they could see me in morning cant move until about 12 get time for meds to work thanks x

Linda, we seem to be on the same page with many things. I confess, I've downloaded her manual but have never read all of it, just excerpts. But I wonder since it was published, almost 20 years ago, if that timing may be outdated. I believe that with the surge of "collective wisdom", the stories of individuals now available online and in support groups that's why I've read 4 weeks or longer. I can't in good conscience tell anyone 2 weeks. For some of us the WD doesn't even start until 3-4 weeks in.

If a person goes too quickly, there can be setbacks, as you know, that can't be undone. If you start slowly and it goes well, a person can stay at 4 weeks, or if it's tough, stretch it out longer. The people I know who have been severely affected went too quickly and/or too drastically and adding more meds (which many doctors will do) will just prolong and exacerbate the problems. I'm very lucky that I had only one med to get off, which has probably helped me.

Don't get me wrong, there were very dark, painful and miserable times, but I know compared to others who have had no relief due to cold turkey etc. I see constant improvements.

Mark, I got off gab because the side effects were life-destroying for me: depression, confusion, severe memory loss, loss of personality, mood swings, inability to do simple math or simple problem solving, severely raised triglyceride levels...and that's just some of the problems. Some people tolerate it well, for others it can quickly turn bad even after months or years. It's a SEIZURE medication, it affects the brain, so of course it can have serious side effect and withdrawal.

I'm wondering if you are missing the "or more" part of the recommendation. and "some people have to go more slowly." You are obviously one of those who has to wait more than 2 weeks. In all of the groups I have been a part of, 2 weeks is the minimum recommended time for waiting between dose changes. Many do okay on the 2-week schedule, but a person has to be aware of their own body. If one is still having withdrawal symptoms after 2 weeks, I recommend that person wait until the effect resolves before continuing the taper. Dr. Ashton worked with medication users of over 20 years before coming out with her manual, so I don't believe the wisdom is any different. The medications still have the same reaction in the body, but I would not disagree that holding 1 month between tapers is a good, safe length of time. Each person has to use their own judgment. That's why I always caution people not to get off too quickly, to lower a small percentage and see how their body reacts. I am one who could do 2 weeks at times and other times I have waited longer. I too know of many people who have cold turkeyed or gotten off too quickly and have had much longer negative effects to deal with. That is why I caution people every day to go slowly and take the medication seriously.

Mark, There are several reasons to get off of gabapentin. As you appear to already be noticing, for many people, though the medication seems to help nerve pain for a while for some, those people often report negative reactions in time. One of the reasons for that may be that gabapentin prevents the formation of new synapses in the brain (demonstrated in a 2009 Stanford University study). It is my opinion that is the reason why so many people who are on gabapentin for an extended period of time develop cognitive impairment and short-term memory loss. Also, gabapentin artificially floods the brain with GABA (gamma-aminobutyric acid -- a calming element). It doesn't take long for the brain to decide that because of the increase, it doesn't need to produce as much GABA of its own (in order to maintain equilibrium) and the production of natural GABA is now deficient. That promotes dependency on the drug and can happen within as little as 2 weeks. If one tries to get off too quickly, there is not enough of the natural "calming" GABA available, so lots of "uncalm" reactions can happen (insomnia, anxiety, sweating, heart palpitations, panic attacks, muscle tightness & pain, akathisia, digestive issues, breathing difficulties, nerve excitement--burning, itching, tingling, etc). For some reason, it takes much longer than most people expect, for the bod to reset and rebuild its natural GABA. For me, I had no understanding of the drug when I was 1st prescribed. I was put on for akathisia that I had developed from the mismanagement of an antidepressant. It worked to calm the akathisia, but then I couldn't get off. I was cold turkeyed, reinstated, slow tapered and did fine, then reinstated again 1.5 yrs. later. I didn't realize that going off and on the drug caused "kindling" however, so I had no preparation for the severe adverse reaction I developed when put on the 3rd time. At that time, there was no question that I had to get off of it. Gabapentin is a dangerous med that is very finicky and demands respect. It can give relief to some, but I have spoken with literally hundreds of people who developed an adverse reaction to it and/or memory loss. One needs to know what they're getting into if they take the drug.

Joseph,

sorry you got put on that crap. i was on it for the same reason. to get off benzos. basically trading one evil drug for another. 900mg per day they had me on. i decided to get off at a quicker pace than recommend here. i dropped 100 per week for 9 weeks and it was pretty brutal but i got through it. i used high grade cbd oil to help the wd.. it helped a lot, made it manageable. it was no walk in the park by any means, but i did it and I'm pretty much back to normal. it's been 19 months since my last dose of gabapentin and I'm almost back to 100%. the first six months off was the hardest but i was seeing small progress on a monthly basis.. i started to be able to enjoy life again around 6-9 months and it's been getting steadily better from there. it's a really slow healing process.. like snail pace but you will get there. i thought i was going to be permanently damaged but I'm pretty much 100% back to the old me.. there are some moments where i get a flashback about the whole experience but i think it's like ptsd or something.. when you get past the six month mark the issues get easier. now a really bad day ain't a big deal because I've seen hell and lived it for months, so nothing can come close to what I've already lived through which has made me a stronger person. i was at about 85% back to normal about a month ago. i noticed that my progress had slowed or even stopped for about 4 months.. i was content being 85% healed and life was pretty good but i wanted to be 100% so i decided to start micro dosing mushrooms about a month ago and it was the best medicine I've ever had. Anyhow i felt like i needed a kick in the butt to get me back to 100% and the mushrooms got me here quickly. i was hesitant to try it because i became highly sensitive to alcohol and cafeen due to receptor damage from the gaba.. which caused negative effects when i drank alcohol or cafeen.. but the microdosing has been exactly what i needed.. i can drink again as well.. i wouldn't suggest the mushrooms until you are feeling 75% healed and feeling stable. gabapentin stops brain synapses from forming which is bad and which causes all the problems were experiencing. the mushrooms create new synapses which has been scientificly proven. the mushrooms have basically awakened my synapses and are creating new neural pathways and i can feel them waking up. it's miraculous. the mushrooms are literally repairing the damage that the gaba did to my brain. i know my path might sound radical to some but i wouldn't do it any other way. i wanted that crap out of my life as quickly as possible and so i took nine weeks to do it. this might not be for everyone but it worked for me. just thought I'd share my story to give others hope. we all have a path and we'll all get to that place we want to be. that's how i got here, and I'm happy and thriving again 19 months later. i wish you all the best on your journey and i wish you all a happy and mind expanding new year.

Linda, your explanation is one of the most succinct understandable ones I've read. I'm going to copy this for my own edification. One of the most evil things of this drug is it's unpredictability. I hesitate to bring this up, as people when they're desperate and in pain, hear what they want to hear. But yes, I know people who have been helped by gab with almost no side effects, have even gone cold turkey without withdrawal (that they were aware of). But no-one knows what their situation will be like.

Yes, I did read "or more" but I can't bring myself to tell anyone to take only 2 weeks. I don't really have much WD until after two weeks,and I know a few others like me. We do seem to be outliers however. Also I do tend to hear the most heartbreaking and extreme situations in the groups I'm in, so I always err on the side of caution. Like you, all I ask is to give patients the information, and let them be educated so they can make an informed decision. But the vast majority are told there are no or few side effects, then ignored or harmed more by their doctors. If we do have problems, we should be offered support, non-harmful suggestions and a reminder that we'll get through this, as countless others have.

I have been off Gabapentin for about 5 months now, after being on it for over 20 years. I am suffering something terrible. It is an awful drug. I was put on it for Fibromyalgia to begin along with a whole bunch of other drugs for anxiety, depression, and pain. I was okay in the beginning years because I was on so many other drugs along with the gab. My doctor ended up retiring and long story short, I was then some years later diagnosed with Bipolar. I ended up seeing a doctor who took me off everything I was on except the Gabapentin, and Buspirone. I was on Lorazepam, oxy codone, vicodin, trazadone, venlafaxine, and Morphine sulfate, all at the same time. This threw my system into shock and the suffering began. For years I started complaining about how I felt, head problems, tingling, cold sweat, among others. I kept being told it was anxiety and I knew it wasn't. When you have Mental Health issues everyone seem to just throw everythin into that bucket and not believe you. After a while of just being on the Gabapentin it became worse and my dosages of other meds kept being changed as I was told it couldn't be the Gabapentin it doesn't have side effects. I finally said enough is enough, I knew a big part of this was the Gabapentin just by when it started and how it started. I was on 1800 mg a day at that time I tried to cut down as slow as I could but when I finally stopped about a week later it got even worse, it has been a nightmare getting off of this stuff. I have told my doctor and everybody else, my doctor's response was it's not withdrawal gabapentin doesn't have withdrawal. That is so untrue. Nobody seems to want to do anything to help or there just isn't any help except time. So I live day to day waiting for this to end. Some days are better than others but it continues to be a nightmare. I was better off dealing with my problems than ever going on those drugs.

I'm so sorry TimBrad. Reading story after story, I still can't believe that doctors haven't listened to us. I've heard of others who end up being diagnosed with a mental health disorder when I'm starting to believe it's usually the drug. Gab can cause mood swings, so then they want to say it's bipolar.

Of COURSE we know there's withdrawal, and more physicians are starting to figure that out. You said you went slowly, but for some of us, it takes many months to drop even 100 mg (like me) and even then there's withdrawal. Then when you add those others meds, they cause more problems as our brains have to heal from multiple assaults.

Hang in there, healing is slow, but it does happen. Have you looked to other support like Inner Compass or Benzo buddies? They're extremely helpful and knowledgeable.

Tim, I am soooo sorry! I totally understand your suffering and frustration with the medical community who are so ill-trained regarding gabapentin. I've been through that same disregard and it is so upsetting! (I even wrote a book about my story. ) I was also diagnosed as bipolar along the way which I have learned is a very common misdiagnosis of people going through withdrawal. There is currently a veteran, Angela Peacock, who is touring the country promoting the film "Medicating Normal" and she shares her story of being polydrugged and the problems with overuse and lack of understanding by prescribers regarding psychiatric drugs. She is still healing after 4 yrs off of her polydrugging episode. I'm so glad you are off of gabapentin. Please know that it WILL get better, but I don't know how long it will take or to what degree. As Babs implied in her comment, getting off of 1800 mg in 1 week is way too fast, but I assume that you had no tapering instructions since doctors get no training in that regard in medical school and usually give incorrect advice when they do offer it. For me, I suffered with horrific relentless symptoms for 6 months after my last pill because of a reverse reaction caused by kindling and a fast taper. Then the symptoms let up enough that I could manage them, though I still had residual skin burning sensations that gradually lessened, but lasted 1.5 more years. I started the facebook group (under a pen name) called "Gabapentin Sufferers Desiring Action" to try to help unite as many people as possible who've had adverse reactions to gabapentin and try to get the word out about the dangers of the drug. Organization and making things happen is very slow, but if you would like to join us, please do. We can offer support and I hope to gather people's stories and put them in book form very soon. Even when we are able to manage our lives again, we have to speak up for others so that what you describe doesn't keep happening to unsuspecting people who are following their doc's advice. There are thousands of people in online facebook groups who describe situations just like yours. All are very frustrated that their withdrawal symptoms are so often discounted by their doctors. I hope your severe suffering does not last much longer, but please hang on. It is hard to see an end when you are dealing with such difficult circumstances, but it will come! Best wishes to you.

I've posted this before and the only thing I can share is my own coping measures. It's been 8 months now and I'll have a string of good days and then boom, like it was yesterday. It is getting better. So the only thing I can do is make the most of the good days so psychologically, I feel more accomplished and better about myself when I have the bad days. And lots of lists to keep me focused on goals, even it is just cleaning one room or reorganizing a closet.

Bocephus I take the same road. I try and feel like I've accomplished something, even if it's small like cleaning a few sinks and emptying waste baskets. There are the usual items (I don't work anymore) that are part of my daily routine, but these last few days, I give myself permission to ease off.

I didn't used to do that. Before I was sick I'd be constantly doing things, never sitting during the day except to eat. Now, I'll accept that I'll sit and read a book for a bit (or spend more time on the computer.) I figure if it distracts me from my problems, it's good.

Thank you for your reply. Not such a good day today. I had some better days but always seems to get worse again. Told the doctor that prescribes the mental health meds, I forgot what there professional names are , She was no help, I guess I should of expected that. She just wanted to increase the meds that I am still on, that seems to always be there answer to everything I said no thank you I am done. I told here about this forum hoping she would look at it and see how many people are suffering besides me, she didn't even seem to care. So much for that! I just basically live day to day not knowing how I will feel. I was diagnosed Bi-polar before I started having problems with the Gabapentin so I do take some meds for that, but not as much as the doctors want me to, just enough to help me out. Latuda and Buspirone. I would have been so much better just dealing with my problems without the Gabapentin, it has made my life so much worse to deal with. Just day by day hoping for the best and trying to stay as positive as I can.

Thanks, it is very frustrating not knowing what one day will be like to the next. It has been changing so much, sometimes better sometimes worse. Very unpredictable. I told I think they are called psychologists that prescribe the medication for mental health issues, not sure though. I told her about my still suffering from the Gabapentin and how terrible it was and that I had found a forum of others like me so I knew it wasn't just me and that I wasn't alone. I even gave her the website hoping she would look and see how many people are suffering. Here response was to increase my meds and she didn't even care. Unbelievable! I told her no I didn't want to increase them, I was diagnosed with the Bi-polar before my problems with Gabapentin so I do take some meds still for that, but I will not increase them or take anything else I told her I am done with meds. Just counting each day I am off of that crud. It has messed me up so bad.

Tim/Brad, People who get off 1800 mg gabapentin as fast as you did usually have symptoms that last for quite awhile. Those who get by with few symptoms taper for about a year or even longer. Gabapentin affects GABA (gamma-aminobutyric acid -- a “calming” element) in the body and can be very difficult to get off of because one’s body will adjust to the artificially induced GABA from gabapentin and start to produce less of its own. If taken incorrectly, stopped abruptly, or tapered too quickly before the body can rebuild, lots of “uncalm” things can happen (insomnia, anxiety, sweating, heart palpitations, panic attacks, muscle tightness & pain, twitching, akathisia, digestive issues, breathing difficulties, nerve excitement--burning, itching, tingling, numbness, etc) because there is not enough naturally-produced GABA available. It takes much longer than most people expect, for the body rebuild GABA, which is why a slow taper is so important.However, you will heal. It will just take awhile and most who got off like you did deal with "waves" (bad moments/days dealing with adverse effects) and "windows" (good moments/days). It's the common withdrawal cycle, but over time the waves get fewer and the windows get longer. The same thing happens if someone has been on and off of gabapentin a few times. Withdrawal is typically much worse. That is what happened to me. I understand living day to day. Sometimes it is hard to see the end. Even though thousands have been through this, there are no long term studies so doctors don't believe us. But it does get better and life becomes more tolerable. Best wishes to you.

That’s why I’m having it really bad. I’m having to taper 900 mg of gabapentin and 2 mg of clonazepam at the same time

Joseph, that's why some groups recommend cutting back on only one at a time, it's easier on you. Yes, that may take longer, but if you cut the misery back in intensity it may be worth it. That's a personal choice, but there is that option.

Thank you for explaining what it does to your system a little better, I now now more than I used to since talking to you. And thank you for your words of encouragement. My doctor did say it was hard to understand what I was going through because there are no case studies for someone like me who has been on it for over 20 years, not with Kaiser anyway. But if they just took the time to do some research on it they would see how many people have been suffering that have been on it and trying to get off it. She told me to try Alpha Liopic Acid, and I did and it did nothing. She even asked the pharmacist about what I was going through and he had never heard of having these withdrawal problems, seems to be the same response from everybody I talk to. It seems that everybody on here has a different set of symptoms from the withdrawal and usage of the gab. My experience has been, a numbness in my head, tingling, cold sweat, feels like my head is on fire sometimes, and there is a war going on inside it to fight against it. Very annoying and frustrating to say the least. so whatever quality of life I was hoping to have dealing with my regular issues have been stripped away because of that drug. I fight anger and resentment every day at what the doctors have done to me, but I am trying to move forward and be positive but it's hard because of what they've done to me. So like I said earlier it seems very unpredictable what it does to people. Anyway it has been nice to chat with you. Take care. Tim.

I have no choice but to taper both at the same time. My spouse can’t handle me having neuropathy and is divorcing me after 6 1/2 years. Forcing me to have to go live with my 76-year-old mother and father until I can get SSI. I was diagnosed with neuropathy due to chemotherapy. And essential tremor. I was put on the 2 mg of clonazepam for the tremor and the gabapentin for the nerve pain. However the tapering is worse than the original nerve pain. It’s so bad some days I can’t sit down. It feels like my legs are being cut open with shards of cut glass. I burn all over my face lips arms legs feet and butt. Also always thirsty and skin dry. I test negative for diabetes all my blood work comes back fine with the exception of vitamin deficiencies in DC. I felt Also always thirsty and skin dry. I test negative for diabetes all my blood work comes back fine with the exception of vitamin deficiencies in D.. I failed three nerve conduction test nerve conduction test. Since I’m getting a divorce my insurance will end at the end of March. I have access to Enough clonazepam for about a 275 day taper. And enough gabapentin for about a six-month taper.

Joseph, Why are you tapering both clonazepam and gabapentin at the same time? If it is possible to taper one and then the other, you would probably be better off. Are you doing a slow taper according to the Ashton Manual?The rule of thumb advised by the Ashton Manual is no more than a 10% drop every 2 weeks or more. When one gets to the lower doses, the drug has more efficacy, so many only taper 5% or less. Some can go faster. Some need to go slower. But if one keeps/his/her taper slow and doesn't try to take big jumps, one can avoid some of the worst suffering. It is important to take 3 (or 4, but most take 3) even/equal doses since the half-life of gabapentin is 5-7 hours and many who try to drop a pill or go to taking it 2x/day or 1x/day start to develop inter-dose withdrawal. There is liquid gabapentin available for smaller amounts or amounts that are less than what a pill would be. The half-life of clonazepam is longer, so it doesn't have to be taken 3x/day, but still needs to be slow tapered as directed above to avoid the worst adverse symptoms. Both GABA drugs have difficult withdrawal symptoms, but withdrawal symptoms can be minimized if tapered correctly. So sorry for your suffering and best wishes. You can do it!

I have no choice but to taper both my spouse is filing for divorce can’t handle me having neuropathy I had to neuropathy before I started taking the medications is from chemotherapy. I will have no insurance at the end of March. So I’m having to taper them both at the same time anal liquid titration. The gabapentin is 900 mg a day It’s a capsule 300 mg each. So I dissolve each capsule in 300 ml Pull out 10%. And then I drink it three times a day. Since clonazepam has such a long happy life I only take it at night

Joseph, I am so sorry for your situation and the loss of your marriage. Though my marriage survived my horrific experience, there are a number of people in the gabapentin facebook groups who have lost marriages because of reactions that their spouses did not want to deal with and are deeply hurt. The burning I experienced was worse than I could have ever imagined. I felt like someone poured acid over my entire body inside and out. My legs, arms, face, neck, and chest, burned along with my mouth, throat, and tongue. Nothing helped enough to relieve the suffering. I had friends come over and help place ice packs on my skin, used aloe vera/solarcaine for temporary relief, and took high doses of B12 for the tongue burning. I had lots of other difficult symptoms too and had all of the tests you had which indicated no problems. I did not want to keep living through it. Each day seemed like eternity. I suffered 6 months AFTER my last pill and then the worst symptoms eased up. I can now enjoy my life, but I would not wish that kind of suffering on anyone. Just know that it does end. If you can make use of support groups like those on facebook, that helps. Hang in there! There are literally thousands of people who understand. Best wishes.

I am sorry to hear your wife is leaving you. I also lost my girlfriend of three years because she couldn't handle my problems and the headaches I was having caused by the Gabapentin I was taking, and my doctors told me it wasn't and kept me on it and I believed them, so I suffered for another 5 years. I also lost my mother the same time my girlfriend left me, this was back in June. She was there when she passed away, went to the funeral with me and I had no idea anything was wrong until she left me a week later. So I lost all the woman in my life all at the same time. I have been trying to stay positive through it all though and I hope you do as well. I know it's hard, just keep moving forward. I guess with my problems I have been suffering with I don't have to try and make my girlfriend happy as well. So I can relate a little to what you're going through. I know it's not quite the same, but hang in there. Take care.

Linda, so would you call that BMS-Burning Mouth Syndrome? I know someone else who has that. I've had the burning feeling, but it's attributable to my PHN (post shingles pain) but I've heard of others with it due to the gab. I'll tell my friend there may be relief in the future.

Timbrad and Joseph, it puts a terrible stress on all relationships. I see it with my husband and me also. The condition and drug issues make us more self-absorbed, which I think is a defense mechanism. When my WD is bad I turn very inward, avoid social contact and can only think about my difficulties. I don't think of it as selfish, I believe it's a way of self-protection. No-one else understands how draining and difficult it is to NOT be you and to continually feel a myriad of symptoms, mental and physical. We're all doing the best we can.

I never had neuropathic pain until tapering and stopping the Gab. My feet were so painful, I bought 4 different pair of shoes and tons of inserts, two test for diabeties, thinking it was me! A few flare ups now and then but almost gone. The burning sensation is my legs are fewer now too.

It was stressful on my relationship with my husband also. I was withdrawn, didn't cook, sullen, etc.

He finally talked to me one night and said, "I want the old you back" and described his version of what he was going through. We both cried and then laughed. But it he weren't such a great man, I might have lost him.

My heart goes out to you guys.....

Babs, Yes, that is what I called it. I joined the Burning Mouth Syndrome facebook group for awhile. They advised taking large doses of b12 (4000-5000 units per day). That seemed to help some, but didn't take it completely away. That let up after 5 months off gabapentin.

Hello, just wanted to let you know how things were going amidst all this chaos the world has been in. I am still suffering into the end of my seventh month. So very frustrating to deal with, and causing more depression and anxiety. I wish it would just stop. Have you had or anyone you know had problems with there heads feeling numb and tingling of the scalp? very annoying drives me crazy! I wish it would just stop! Some days have been a little better and then worse, it seems so unpredictable. I just live day to day hoping one is better than the next. Trying to stay positive and control the self talk of being angry for being put on gab and hating my medical community for keeping me on it for over 20 years. How are you doing? Please let me know what you think and how things are going. Tim.

how long did it last for you? I've never had nerve pain either until stopping gabapentin which I was on 300mg 1x a day for only 1 week 😦(

Tim, a number of people in the Facebook withdrawal and Sufferers Desiring Action groups mention numbness and tingling, but it can be in different places for different people. I had those symptoms, but they were more in my limbs. I had a little tingling in my head, but it was very fleeting. Do you notice the symptoms getting worse or better when you consume certain things? (There were certain things that made my burning sensation worse. ) Do you have waves and windows where things are better at times and at other times they are worse? Or is your recovery pretty linear? It could be that there is no correlation to anything, but I thought I'd ask. People's experiences vary so much even though they can also be very similar. I am doing great now, but it did take 2 years for the last residual effects of diminishing skin burning to end for me. I really hope things get more tolerable for you very soon. Your symptoms should get easier over time. Keep me posted.

Olivia, You did not address your question to me, but since I can relate, I'll just share that I never had nerve pain until I took gabapentin. I didn't even understand nerve pain. But I definitely had it during gabapentin withdrawal. Mine was severe and lasted awhile because I'd been on and off gabapentin 3 times and because I'd been on a higher dose. For me, the worst lasted 6 months. Hopefully yours won't last that long.

I was on 100mg X 3 per day for 1 1/2 years. The nerve pain, swelling, burning in my legs and feet began as soon as I started tapering. It was at it's worse for a little over 1 month and once I was completely off of it, it decreased rapidly and was completely gone after no gp for 2 months except for a few flare ups. I still get a numbing burning sensation in my thighs once in a while but it has gotten rarer. There is light at the end of the tunnel. Hang tough!

Thanks for the update Timbrad, I often wonder how people are doing. The important thing to remember is that gab affects the brain, therefore the entire body's nervous system. Last year, as I was finally down to about 1000 mg. I started to get tingling and itching on my scalp. Of course you think of all kinds of gross things (lice), but it wasn't that. It's just the nerves. I still have it regularly, it doesn't itch as much, but it's not a scalp issue, its the gab. Scratching doesn't help, it just excites the nerves more. Sometimes using cool to cold water on the scalp can help, but I just try and ignore it.

I've been of gab since 12/26/19, from my high of 2700 mg. The first few weeks were OK, then I had about 5-6 weeks of almost constant withdrawall--pain, depression, fatigue, confusion, but it finally got better. For the last 3 weeks I've only had some stretches, none as bad as that. If you can get it, I recommend counseling. Even if you can't leave the house, some employers have EAP's-Employee Assistance Programs in the US. That's what helped me in the beginning.

I'm very grateful that I'm past that. I can't imagine dealing with the pandemic and WD. It's not surprising it's tough, just one day at a time, lots of movies, TV, books, whatever it takes. And chocolate. That REALLY helps.

thanks Linda for your reply. It's been a little over 2 months for me. I've never had nerve pain before and the only thing different was stopping the medication that's when it all started. it's awful I want my old life back! I have two small children my life is being consumed by this pain. I've tried corticosteroid injections, different medications, vitamins creams no relief. bloodntests etc they cant find anything wrong. recently I even went for 3 accuptunre treatments and I'm terrified of needles they didn't work. I'll do anything to get rid of this 😦 trying to give it time but it feels like forever.

thanks for your reply! it's going on month 3 for me. its miserable!! and the pain is mostly on my abdomen/sides driving me nuts because doctors cant find anything wrong and everything I'm reading about neuropathy involves feet and hands which aren't my problem areas. so confusing.

Everybody is different so it is not going to be same for all. I woke up with double vision one morning that last for a month! 6th nerve Palsey. 8 MRIs later, no cause was found. It's not you, its the gab.

how scary! glad you are feeling better. my insurance is denying an mri stating it's not necessary 😦 I've had xrays and blood tests for testing and everything is normal. the doctor tried to put me on horizant which is another version of gp I was dumbfounded like way to not even listen to me

Thank you for your response. I am glad you are doing great now. I have had some better days from time to time where it seems like it is going to end, and then it comes back. Very unpredictable with the symptom severity all over the place and my anxiety peeks. I know I need to keep thinking about how it has changed over time, and not how upset I am because it has not stopped yet. I keep living one day at a time that's all I can do. And hope one day is better than the next. This has been terrible to deal with, that my quality of life has been taken away by a medication that was supposed to help me. It helps sometimes to think it has only been 7 months and I was on it over 20 years and it takes time to get your system running normal again. I have stopped taking all mental health medications and have been taking natural supplements for mood health. I keep telling myself as much as I can that I am off allof that junk and try to stay positive, but it's hard. I am so glad to hear you are doing better. Take care. Tim.

Thank you for your response. I know what you mean, when my head is really bothering me I have to sit in my recliner with a cold rag on my head, or sleep with my hand on my forehead to distract from how it feels. It tingles at times like you feel when the hairs stand up on the back of your neck. And the numb cold sweat sometimes even heat in my head is so annoying to me it's a nightmare. It must be all caused by my nerves and nervous system from what the gab did to me and it takes time to rewire my system. I am glad you are doing better. Just one day at time like I said before and trying to keep focused on the fact that everyday is another off of that nasty stuff. Take care.

If they can't find anything, do not take "suggested" meds.

These could make the effects of the gab w/d worse because they all effect the brain and body respond.

I agree I'm not wanting to be on any medications at all. I've been trying vitamins and chiropractic/accupuncture these medicines are awful to have caused something like this 😦

Olivia, I'm so sorry you are suffering what so many others if us have. Yes, we try everything and it just takes so long for the nerve pain to end. Complicating that is that doctors don't understand this med and when tests don't show anything, they often don't believe gabapentin is the cause. In case you don't know, Gabapentin affects GABA (gamma-aminobutyric acid -- a “calming” element) in the body and can be very difficult to get off of because one’s body will adjust to the artificially induced GABA from gabapentin and start to produce less of its own. If taken incorrectly, stopped abruptly, or tapered too quickly (or the wrong way), before the body can rebuild, lots of “uncalm” things can happen (insomnia, anxiety, sweating, heart palpitations, panic attacks, muscle tightness & pain, twitching, akathisia, digestive issues, breathing difficulties, nerve excitement--burning, itching, tingling, numbness, etc) because there is not enough naturally-produced GABA available. It takes much longer than most people expect, for the body rebuild GABA. I know that it doesn't seem like just one week could cause your symptoms, but it is amazing how quickly one can build up dependency and/or tolerance to the drug. Part of your problem is that you were taking it 1x/day. Since gabapentin has a half-life of 5-7 hours, it should be taken 3x/day, but I am amazed at how many docs prescribe it to be taken 1x/day -- usually for sleep. It has been my experience that those who only took it 1x/day have the most problems -- especially getting off. Some things that help some people -- magnesium -- either as glycinate or soaking in an epsom salt bath. I had terrible nerve "burning" and was surprised to learn that aloe vera numbed my skin and made the burning a little more tolerable. Most people report that steroids make their symptoms worse, so you might want to avoid those. I know how are it is to deal with the nerve pain and how consuming it can be. It can be quite horrific -- as it was for me. Just know that your symptoms WILL get better! It just usually takes a lot longer than you want or assume it will.

it wont load your reply for me it just shows up the first two words 😦

Interesting. My reply said I'm so sorry you are suffering what so many of us have also suffered and I understand how hard it is to deal with the unrelenting nerve pain and how it consumes your thinking and your life.  I had a severe burning sensation that was terrifying along with other symptoms. I found magnesium glycinate helped somewhat along with magnesium that gets in through the skin in an Epsom salt bath, though they didn't help enough. I was also surprised to realize that aloe vera lotion (for sunburns) actually helped numb my skin and make the burning more tolerable. It seemed to help relieve that symptom better than anything else I tried. You may not know that gabapentin affects GABA (gamma-aminobutyric acid -- a “calming” element) in the body and can be very difficult to get off of because one’s body will adjust to the artificially induced GABA from gabapentin and start to produce less of its own. If taken incorrectly, stopped abruptly, or tapered too quickly (or the wrong way), before the body can rebuild, lots of “uncalm” things can happen (insomnia, anxiety, sweating, heart palpitations, panic attacks, muscle tightness & pain, twitching, akathisia, digestive issues, breathing difficulties, nerve excitement--burning, itching, tingling, numbness, etc) because there is not enough naturally-produced GABA available. It takes much longer than most people expect, for the body to rebuild GABA. The other problem that may have affected you is that you were only taking it 1x/day. Because the med has a half-life of 5-7 hours, it really needs to be taken 3x/day to prevent inter-dose withdrawal. I am amazed at how many docs prescribe only 1x/day though -- usually for sleep. I know it seems strange that you can have these symptoms after only taking gabapentin for one week, but it does happen. In my experience, it seems more common in those who took it 1 time a day. They seem to have the most trouble getting off. Just know that things will get better. It just takes a lot longer than you think or hope it will.

Yes, it can take a very long time, which is so discouraging. Usually during a taper I have several bad weeks, with some ups and downs. This last hard time lasted almost 6 solid weeks, two good days, then another two bad days, THEN a good 10 days. Those good days made me know that it will end, but it's not on our time table. We used the phrase Waves and Windows, waves of hard times and windows where we see it will end.

I applaud and support your being off all drugs. I've often seen that when people substitute or add another drug, it can prolong or increase the bad symptoms.

my burning is so bad i cant even get in water. i have to take baths in the sink. cant go out in the heat. very heat sensative its taken 16 weeks for me to go from 300 mg 3 times aday to half that amount . on top of that im having to taper off clonazapam and ambien

Hang in there Joseph, that may have been too quick taper, although it may have seemed like a long time, particularly if you're also decreasing those other meds. Are you considering just staying at the same dosage for a few weeks or months to let your body adjust? Dropping gab and clonazapam at the same time is very tough on the body.

OMG, do you absolutely have to taper the other two at the same time? That makes it even worse.

All I said was the a high quality "legal" cbd oil helped me as well as diet changes.

have no choice spouse left me and lost insurance . my Neurologist did double my dose for the Gabapentin with eight refills so I could stretch it out. But not the clonazapam i have about 6 months to get off the remaining 1mg of clonazepam

I thought our paths had crossed and there was a specific reason you were doing it like that. It's terrific that your Neuro has helped with refills. I'm not familiar with the best way to taper from clonazepam, but now that you have more gab, if you can create a new plan for dealing with just one, that would be really helpful. Again, if you can delay and allow the body some time to adjust (and it WILL, we don't know how long) that would really help.

I appreciate the suggestions and you taking the time to reply!