Gabapentin Withdrawal Horror

I too was put on the gab for pain instead of Hydrocodone that I had been on for over 12 years. It made the pain worse and screwed my mind up real good. I was better off on nothing than with the gab. Good luck to you on finding a new pain mgt doctor.

It's your choice to not take a drug. Doctors, as we've mentioned countless times are clueless about gab. If you want to stop taking it, consider how to do it safely and carefully. Groups suggest 10% or less over 4 weeks or more. The longer you're on it, the more likely it is that you'll have more problems and a harder time getting off. Gab seldom works to help with pain, but doctors are throwing it at anything.

BTW, I've lost faith in "pain management" doctors, many just resort to other meds.

I'm so sorry that you and your mother have been caught by the ignorance of doctors, as has happened to 100's of thousands of people (likely much more) world-wide. I wish I had an easier way to soften the blow and explain this, but I'll cut to the chase. Yes, what your mother is dealing with is very likely from the gab. Tramadol isn't a "narcotic" but can have some very difficult and dangerous side effects too, which I didn't know when MY mother was put on it. However, the bigger issue is the gab. You can't undo what's been done. That decrease was way too drastic and the withdrawal may take months to heal. The only thing that may help slightly is to keep her at this dose for quite a while, months or longer, to allow the body time to heal and compensate for the drastic reduction in the med. It may sound like one months is a short time, but in most people anything longer than 2 weeks is the safe point for making changes to a dosage. Respected support groups recommend a 10% or less reduction in a daily dose over 2 weeks or more. For many 4 weeks or longer is better. She went from 2400 or 3200 down to 300 in a few weeks.

She may exhibit many different symptoms of withdrawal, quite a few of which you're seeing. These may change, increase, decrease or stabilize over the next few months. We can't predict. Some people have fewer problems than others. As you may know, gabapentin isn't a "pain medication". It is a seizure medication which in some cases somewhat reduces the sensation of pain. It generally is ineffective but doctors don't know that. It was hyped and pushed by the drug companies, and there were lawsuits. In clinical studies it's shown to be only somewhat helpful for 2 painful conditions: shingles and complications from shingles (which is why I was on it for 3 years) and small nerve diabetic neuropathy. They were told there are no side effects and that people can easily and quickly get off it. Not true. If you tell doctors this, this don't believe you.

You're a wonderful daughter for trying to help her. You trusted the medical world, but they were ignorant. Read as much as you can in groups like Innercompass or Benzobuddies, both online groups. Most drugs that work on the brain, whether opioids, gabapentinoids, benzoids or anti-depressants have similar effects on the body.

Reassure her that it will improve, but you don't know how long it will take. Remind her it's the drug causing these problems, that it has to be waited out.

Babz, Everything Babs said is exactly right. Let me add a few more details. Gabapentin IS NOT a safe drug -- especially for the elderly. Many who take it deal with imbalance and elderly people often are more prone to fall. Stanford Univ did a study in 2009 that demonstrated that gabapentin prevents the formation of new synapses in the brain. Though adult brains don't produce as many new synapses, they are needed for forming new memories and for sites where there are injuries to neurons (such as after a stroke) which may be why so many people taking gabapentin report short-term memory loss. As Babs said, people can become dependent on gabapentin very quickly -- within 1-2 weeks. I administrate a gabapentin group and I hear this story all the time. Babs' taper advice is protocol and the safest way to get off of gabapentin -- tapering over months -- definitely not days or weeks. It is important to take 3 (or 4, but most take 3) even 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. 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 imbalance of GABA and glutimate. (Glutamate revs things up and GABA calms things down.) Glutamate is blocked in calcium channels by gabapentin -- which promotes an imbalance/overload of GABA . The body then starts to produce less GABA of its own to try to bring the body back in balance. If taken incorrectly, stopped abruptly, or tapered too quickly or the wrong way, (or if you have developed a tolerance) before the body can rebuild, lots of “uncalm” things can happen (insomnia, anxiety, agitation, sweating, heart palpitations, panic attacks, muscle tightness (or sometimes weakness or lack of coordination) & 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, which is why a slow taper is so important. Doctors are notoriously ill-trained regarding gabapentin and often give inappropriate advice regarding prescribing and tapering and according to a CNN special, get NO TRAINING on tapering psych drugs in medical school. The experts are those of us who've been through it and studied it in-depth for ourselves, unfortunately. I agree with Babs' suggestion to hold and not get off of the gabapentin completely yet until her side effects die down. It may even be helpful to increase the dose a little until she stabilizes and then help her use an Ashton Manual style of safe taper (10% or less every 2 weeks or more) to get off. Too fast tapers and abrupt stoppages of gabapentin can result in long term difficulties, but proper tapers can work well for people and reduce symptoms exponentially. So glad you are investigating for your mother and best wishes to you and to her.

A couple more things -- gabapentin IS NOT extended release. There are forms of it that ARE -- like Horizant and Gralise, but what she is taking NEEDS to be taken 3x/day or 4x/day to prevent inter-dose withdrawal. For those of us who have been through this, tests almost always indicate no problems, so I'm not surprised that the stroke test came out negative. Gabapentin causes all of the problems you mention. So sorry! Please know that your mom can stabilize and things WILL get better if you are careful and docs don't make a lot of abrupt changes or add other medications to the mix to "help" the gabapentin withdrawal.It often takes longer than people hope to stabilize and to get off, but it DOES happen.

I want to thank Linda for adding my details to my original suggestions. I know the drug well, and am dealing (still) with my own issues with memory and cognitive problems. Sometimes it's hard to find the best words and I make things a bit too brief. But it's a very difficult problem and a complicated situation. Right now, you understand more than many doctors do. That's not arrogance, it's the truth. For years they were told there's no problem and it's been up to the victims of this drug to do our own research and learn from each other and through trial and error. Groups like this are the reason I'm finally doing as well as I am.

Give you mother a hug for me. Literally. I miss mine.

thanks y'all for your words of encouragement and all your knowledge. I was doing some more research today because I'm trying to get her meds schedule right. She takes a lot of meds. besides the Tramadol she only took for a week while on gabapentin , they also gave her some codeine last week which really messed her up with the Gabapentin. the doctor took her off codeine after the CT showed no new stroke activity. but she takes levothyroxine, omeprazole, Clopidogrel in the mix with other medications and supplements that they prescribed for her. Oh and she takes Wellbutrin also. since the Gabapentin is last Med added, I really don't I know why these doctors who are not her normal doctors added that when she's taking all these other meds.

I've decided that I'm going to message her psychiatrist and discuss all this with him. He's the one that noticed her symptoms and called attention to it. since he's in a different hospital system I don't think he's aware that she's been put on gabapentin. I don't trust her PCP to know her well enough to help out with this.

my alarm just went off and I need to go give my mom some meds before dinner . Talk to y'all later .

Great suggestion. I use yoga and strengthening my core muscles to deal with back pain.

Tim, I remember you commenting before and again, I am so sorry. I understand your contemplation of giving up. Almost all of us have felt that way. I survived an attempt and am so glad I did because I am now enjoying my life -- something I couldn't even fathom when experiencing extreme withdrawal. Your recovery not only depends on how fast you tapered gabapentin, but also what the other drugs were that you came off of and how fast you tapered them as well. If you were on other GABA drugs like benzodiazepines or muscle relaxants, your recovery will most likely take longer -- but you WILL get better. When I was suffering the most, I would consult the benzobuddies site because I couldn't find gabapentin information at that time and the withdrawal journey was a lot the same. Though benzo recovery tends to be even longer than gabapentin if taken for a long time, people did get better then too. For benzos, the average length of time for recovery was 14 months. There were many people whose symptoms became more manageable as time went on, but there were many others whose recovery took several years. They were able to plod on because they had intermittent "windows" that would give them hope that healing WAS happening, but the dark times (the waves) were still very dark. I run a gabapentin group and there is a man who has been off of gabapentin for almost a year, who posts daily about his ups and downs -- though his windows keep getting more frequent and he can actually cook meals and do some light house cleaning of his apartment sometimes now. The other thing that can affect recovery is if you take anything else. Muscle relaxants can complicate recovery as well as some other substances. Steroid shots can cause a wave or symptoms to recur for awhile. Make sure you are eating clean and avoiding alcohol, caffeine, and such substances. PLEASE hang in there. When suffering withdrawal, your brain lies to you. You are convinced that there will be no end and you feel like you just can't live (exist is a better word) that way anymore. It's very tough. You are doing the right thing by reaching out to those who understand. People who haven't been through this don't get it and doctors usually don't. Yes, the tests usually show nothing. I had numerous tests as do most people and nothing turns up. (That is why most of us are labeled hypochondriacs.) As I said, please hang on and do what you can to distract yourself to get through each day until the healing gets more clear and the suffering less intense and more manageable. I did take Epsom salt baths to get magnesium into my body to help calm my symptoms a little. Do light exercise if you can tolerate it. Take walks if you can. Play solitaire. Distract yourself with a TV show that you can tolerate. And keep reaching out until your start to see the light at the end of the tunnel. Best wishes. I just said a prayer for you. I care and I know the others on this site do too.

Timbrad, we do understand. I was never actually to that point, but very close during the 3+ years I was on gab and tapering. I've been off it for 5 months now, and despite dropping very slowly and carefully (my final drop was from 300 to zero, but I stayed at 300 for 7 months before that final drop and was feeling so good then) this has been tougher than I expected. Just a few days ago I decided I never would feel better, I still had some pain and discomfort, the depression, confusion and memory loss were still an issue. Better than the past, MUCH better than when I was having bad WD, but I thought it was as good as it would get. SURPRISE! The last two days were a little better (but it's fragile) and today, I feel almost back to my old self. I have to remind myself also that this will come and go. I think the bad stretches are longer now off the gab, then my other tapers, but I just accept whatever happens. NOT happily--usually in a low mood, but just plodding thru.

You're right, doctors can't do anything for us. More drugs won't help, they'll make it worse, time, patience, distraction, friends, pets and a good therapist will make it a little easier, sometimes a lot easier. The pandemic makes it all MUCH harder for those of us dealing with these issues. I hope you have even a few better hours soon, so we can remind yourself there will be more of these. I had to do that the other day--this pain isn't as bad as other times, my brain IS clearer generally etc. But I think we all, despite what we know, think somehow it will go faster. It does get better.

Tim

I have posted on here in the past. I too have horrible burning, tingling on the face daily. I have tried to cut down really slowly, 100 mg every 4 to 6 weeks but still I go through the same things every day. As soon as I wake up in the morning, the intense burning tingling sensation begins. It's horrible and sometimes I feel queasy and nauseated with it too. It intensifies the continuous headache I was put on gabapentin for. It only subsides somewhat when I get up but I don't want to get up because I know what a struggle it is going to be to just get through the day. The longer I am up, the worse the pressure and pain in my head gets and I get lightheaded and woozy. If the burning in my face gets worse through the day, it intensifies the headache even more. Like you, the doctors don't think it's that bad. They assume because I look good and sound OK, I must be exaggerating. If the burning is bad and I lay down, it intensifies and so does the throbbing pain in my head. Sometimes it feels like my whole face is throbbing. Like you, I am in survival mode. I was only on 1200 mg and have been going through this now for over three years. I am a retired Physical Education teacher who is used to being really active. This has changed my life. I have quantity of life but no quality. Some nights I go to bed just wishing I won't wake up, but I do. I keep hoping it will get better but it is hard when you have suffered for so long. On days that are bearable, I try to do what I can. I can only say, you are not alone in this. Hopefully one day doctors will realize how horrible this drug is and how hard it is to come off. Until then, people like you and myself and many others will continue to struggle.

Some of us, like me, are so sensitive we need much longer to drop. I was at 2700 mg at my highest 3+ years ago. After trial and error, I found 8 weeks or longer gave me better results. It gave me a few good weeks after WD to emotionally prepare for the next drop. It may seem like a step back to take extra time, but it allows the body to heal. I also scheduled my decreases to avoid holidays, special events and vacations so I could enjoy them more. WD still was hard, but I could plan on some good stretches too.

Thank you for your words of encouragement. I feel like I am alone I lost my mom last year, and my son moved out. My girlfriend left me 2 weeks after my mom passed away because she couldn't handle what I have been going through. My stepdad has been supportive when I call him. I bring all this up because it just makes things harder to deal with when you're alone. I am having a lot of trouble stopping the negative self talk because I am alone. I have been trying to stay positive but it is difficult, I am so angry and frustrated that this has happened to me. I have always been able to handle whatever situation has come my way and have done it alone, this time it's the worst thing I have ever experienced. Never thought I would be going through this at 58 years old. I am sorry if I sound pathetic and sad. I will try to keep telling myself it will get better, this is just another day toward recovering. I did see you comment to someone that has been improving but it has been hard for her to acknowledge because it was still bothering her, but you could see her getting better in her words. I have been the same way, I have had better days but because it still comes back at different levels, I continue to get angry and frustrated and forget the fact that there has been changes. Thank you for the prayers. This is the only place I have shared my situation so extensively. I appreciate the community. Sometimes I don't get on here because I am used to just dealing with things alone, but it has been a tremendous inspiration for me that it's not the end but a new beginning for me if I can just keep my focus on that. Take care and talk again soon.

Thank you for your reply. 3 years you have suffered, I am so sorry. I dealt with side effects for over 5 years from the Gab, but I was on it over 20 years. I took so many other prescription drugs with it though that I believe it cancelled a lot of the effects of the gab out. When I was taken off all the other drugs that I also shouldn't have been on, Lorazepam, Morphine sulfate, Hydorchodone, Venlafaxine, Buspirone, and of course Gabapentin, and whatever else I don't remember. And all at the same time. But of course I was taken off all of them but the Gab because it wasn't harmful for me according to the Doctors, right!! it was probably the worst one. I then started feeling the side effects of the gab. I went into to the Mental Health department and complained for the longest time and was always told it's not the gab it doesn't have side effects, so then of course being trusting like I am I stayed on it and kept trying other drugs, Busperone again, Latuda, etc I continued to suffer for years until I figured out it was the gab and got off it and everything else and it has been the worst 9 months ever. I wish we could all turn back time, I would have never taken that stuff! I hope you continue to feel better as time goes on, I will say a prayer for all off us. Thank God there is a place like this for us to share and support one another. Thank you.

Tim, You are welcome. I hope you can hang on to the positive facts you shared about the improvements you HAVE experienced and remember you are not alone. There are many of us who understand exactly what you are dealing with -- the anger, the frustration, the disappointment, the "Why me" thinking. It shouldn't have happened to you. It shouldn't have happened to us -- since we were following our doctor's advice exactly as given. Things were going well with my life. I am an intelligent person. I'm responsible. I have commitments and people who depend on me. I'm not a drug abuser. I have a lot to give. Why me? I have heard soooo many men (and women) say they could always handle whatever came their way -- some even in the mental health field -- until they had to deal with gabapentin. All are so baffled by the way they have been debilitated by the drug. Yes, it's most likely tougher than anything else you've ever experienced and not fair, but you can do it! I hope you keep reaching out or join a Facebook gabapentin group where you can have immediate feedback. There are literally thousands of people suffering as you are that are members of those groups. Hope to hear from you again.

Thanks Tim. Any specialist I have seen, (headache, internists) all say my symptoms are not gabapentin withdrawal. They give me no explanation of what is causing them and ignore it like it isn't a big deal. My family doctor is at a loss for what to try but he sees me every 4 weeks to check in on me. Doctors need to wake up to the fact that there ARE withdrawal effects and that they can be very debilitating. I keep hoping things will get better but right now that doesn't seem to be the case. Like you, I just want my life back.

Thanks Babs. Right now I am just trying to survive one day at a time. It's been so long since I have had a bearable day I am beginning to think this is what the rest of my life will be. It's hard to stay positive but I am trying to hang in there.

Never apologize for what you're going through. Would you apologize for Phantom Limb Pain after an amputation? That pain is real. Neither should people with PTSD or mental health issues apologize. We were harmed by the ignorance of the medical world and the greed of the pharmaceutical companies. We're doing our best in an extremely difficult situation. The hardest part, like the pandemic, is not knowing when it will end or what will happen. When my husband was recovering from a knee replacement, I'd feel angry when he's complain. He KNEW it would get better, he knew there was an end in sight and a given time. Hang in there Timbrad. All I can tell you is when I have my windows and the WD lifts (like it finally did a few days ago--no depression, less pain, clearer mind and better memory) I'm a different person. Your body has a lot of healing to do, they gave you a truck load of meds. Try and remember even those simple, small improvements. Write them down, it helps us remember that there are ups and downs but there ARE ups.

Lynn and Timbrad, I know for me that stress makes it much worse. Are any of us under more stress for some reason right now LOL? Very few doctors know the problems gab causes, which is incredibly negligent as there are multiple pages of side effects listed with our prescriptions AND a black box warning! They've been told it's fine, they dismiss our concerns and continue to do things as they always have.

But I believe since the internet's social groups and easy access to research more doctors are starting to understand. It took months for my doctor to be convinced. His nurse and I talked regularly, and finally we got thru to him.

sorry to hop into the convo. I've also seen so many doctors bc of this burning pain that only started when I stopped gabapentin. I went to an internal medicine doctor yesterday and I'm still so upset from it. my poor eyes are puffy from crying. he asked me over and over if I was happy and that I have an extremely fast heart rate due to anxiety. I said of course I'm anxious I've been an

anxious since this all started. no doctors can figure out what's wrong or how to help me. he wont let me leave without getting an ekg which showed rapid heartrate due to anxiety no duh!! and prescribed me xanax for anxiety. he said I'm probably anxious due to covid. I was speechless. I explained over and over I want this pain gone and it's due to gabapentin and all he got was im extremely anxious and im not happy with my life.

Olivia

Glad you joined the conversation. This drug alters your brain functioning so of course it's going to cause withdrawal. Doctors think they know better than the patient who is experiencing the symptoms, but they don't! They need to start listening instead of TELLING us what we feel is all in our head or due to anxiety. If they don't know about something, they should admit it. My family doctor isn't afraid to do that and I appreciate him even more for that. I have been dealing with this for over three years now. My family doctor knows I am struggling but he doesn't try and put me on antidepressants or anxiety meds because he knows it won't treat the underlying issue, only cause more side effects or withdrawal when they don't work. Keep me posted.

When I got my Rx from CVS, the bottle stated "May cause fear". I really appreciated that they stated it clearly, rather than burying it in the patient information sheet. May Cause Fear. Exactly. This is unscientific, I'm not a researcher but I've read a lot and suffered because of this drug: the drug acts upon chemicals in our bodies like cortisol and adrenaline; think fight or flight. There are no saber-toothed tigers, but the body reacts the same way, anxious or fearful because of the flood of chemical reactions with our brain. I'd remind myself, it's the drug, not me. This is simply a mess of chemicals telling me the tiger's going to get me. I'm stronger than it.

It is NOT us, it is the drug. Thank God Lynn found a doctor who understands this. Olivia, I don't know if this will help you or if you agree, but when I figured it out, felt I got a tiny bit of control over my life and it did help me calm down. Whether it's caused by the drug or personal issues, there are techniques to help deal with anxiety. If you look them up, they are simple, often unnoticeable by others and totally drug free. We'll all get thru this together.

Olivia, I'm so sorry, but I feel your frustration because I had almost the same thing happen to me. (I actually wrote a book about my story and I describe my meeting with a neurologist in my book.) I had terrible burning pain from gabapentin withdrawal. But I was also pacing the room and extremely anxious (all symptoms of gabapentin withdrawal, but doctors are often clueless about it). As I paced and tried to get my breath, I told him I usually wasn't an anxious person. (I'm not a worrier. I tend to roll with things in life. My husband is the anxious one,) The doctor replied, "What do you mean you're not anxious? Just look at you!" He wrote in the report basically that I had no real problem except a psychological one -- being too consumed about some minor burning that I claimed was from gabapentin but he said, could not possibly be a reaction to gabapentin. I was furious, but was too ill to deal with him. I spent a lot of time crying too! The good news is, I did recover. I'm 3 years off and have been doing well for quite awhile -- but the withdrawal was horrendous! I am now devoting my life to trying to correct some of the ills that happened to me. It's tough to get the medical people to listen however. I won't stop though because this drug is hurting way too many people!

I left an update about what I have been going through with Gabapentin withdrawal for the last 9 months about a week ago to one of my doctors. I was reluctant to even look at the response because I knew what it would be. So I decided to check just before I got on here, and just as I thought her answer was more meds and nothing else, I guess I expected that. There is no sense of even telling them anything anymore because they just don't care. I told her about this website and all the people that are suffrering from gab and she won't even look or respond to it. She just says it's good you have the forum to look at. Very frustrating. I don't understand exactly why gab withdrawal is so long and what has it done to my system? I have suffered so much for being off it for so long. But I was on it for years as well. I never thought that a medication could mess you up so bad. I feel like I reached out to the medical community for help and now I am suffering for it. Even my PC said it wasn't the gab. Very frustrating, so I continue to struggle day to day and try to be positive and not give up.

what do u take now for pain? im just curious

i tried to post a message about my experience using cbd to help with gabapentin withdrawal. why would the moderator delete my post? I'm passionate about helping people and i found something that helped me and i wanted to give others an opportunity to make a choice as to whether they would like to try what helped me. I've been through all the exact same things as all the other victims here yet im not allowed to share my experience? cbd is legal.. so why can't i talk about it? please give me an explanation rather that delete my post. I'm trying to help people. I'm not trying to sell a product. I'm not affiliated with any company. i have compassion for people suffering from gabapentin like i did. Moderator please give me an explanation as to why you deleted my post. thank you

Lorimarie

There is nothing that helps the burning, pressure pain in my left eye, and believe me I have tried everything that doctor's have prescribed for me. The only relief I get is when I am sleeping, which isn't very long these days. I have not found anything to help the intense burning on my face and arms either. Right now I am beside myself, trying to ignore it but I will soon have to go lay down. These days, horrible left eye pain seems to be the norm. I have tylenol #1 and tylenol #3 which I take but with no real relief. Doctors don't believe me about how debilitating the pain and burning sensation is. sorry I can't be of more help to you. If you find something that works, I would love to hear about it.

Matt, none of us posting here is blocking anything. The "moderator" is often just an logarithm that picks up on certain words or phrases. Some of us joke and call him/it Mr. Moddy, as there is often no rhyme nor reason. However, this is an international group, based in the UK and I don't know if that product is legal or allowable everywhere in the world.

However, I will say that much of CBD has low levels of THC, it is NOT THC free. For some people extremely sensitive, this can be like adding another drug to the body which can impair brain function.

Thanks for the explanation babs. I personally don't see any difference between using cbd or Tylenol for relief. I had an incredibly positive experience using cbd during my taper. I was able to get off gabapentin in 12 weeks dropping 100mg per week using cbd which cut my withdrawal symptoms in half. Its two years later and I've made a full recovery. i just wanted to share this with others who might be interested. I learned about the use of cbd for withdrawal while on another site for gabapentin sufferers. I'm only trying to help! if someone is interested in hearing my story you can contact me privately. Good luck to all of you.

Lynn, I had severe burning over many parts of my body during gabapentin withdrawal. Though b12 helped a little with the mouth burning, I put ice packs on my arms and legs to get temporary relief. The other thing that I was surprised gave me some relief was solarcaine/aloe vera lotion. It is used for sunburns, so I really didn't think it would help when someone suggested it to me, but amazingly, it numbed my skin and gave me a temporary reprieve. Nothing ever helped enough or lasted long enough, but I was very thankful for anything that helped. My burning was intense for 6 months, then became manageable and gradually dissipated until it was gone after 2 years off.

thank you for your reply. I cant find a doctor that will listen to me and help 😦 gosh I've been to so many. they just keep prescribing antidepressants or xanax. I don't want to take any medication I just want the pain to go away

oh my goodness! I'm glad to know I'm not alone!! I've never been anxious like this either it's this burning pain that's consuming me and causing all this stress. he would not let me leave without the xanax prescription saying I'm too anxious and I need this to calm me down. no I need someone to listen and help me not tell me that I'm crazy 😭 so glad you're feeling better I hope my time is coming too

this is exactly what I have as well. the burning is insane 😦 glad you're feeling better now!! I dont understand why this has to last so long. did you take any prescriptions during your 6 months? or just the vitamins and aloe?

Thank you Linda, I will give B12 a try and i have some aloevera as well.

No, you're not alone. There are 100's of thousands of us (or likely more), it's just hard to find the info at first. The "burning" is the nerves responding to the damage (most is temporary, but may last quite a while) caused by the drug. Linda mentioned a cream. I use Aspercreme with Lidocaine OTC, you can also get lidocaine pain patches OTC or via prescription. They're expensive and have only a slightly larger dose of lidocaine, so I saved money and did OTC. I use the roller ball. I also have PHN (post herpetic neuralgia--pain after shingles due to nerve damage) so I've been using it for a while. Almost EVERY single comment or post I've read in the many groups I've been in say the same thing, "the doctor says it's not the drug causing my problems." Adding more meds will increase the likelihood of more damage to the brain and then you'll have another drug you have to taper off.

It's very difficult to have a condition doctors dismiss and is difficult to treat. But some OTC products, supplements, therapy with a good counselor and time will help. The drug literally causes the anxiety and depression. It states that right in the warnings and side effects, but doctors are too busy, overwhelmed or confident in their own knowledge to read those.

I'm glad it helped you so much. Chemically and how they work on the body and brain, those two drugs are very, very different. I'm always hesitant to recommend any procedure or medication/drug/supplement as we don't know how someone would react.

Throughout my experience getting off gabapentin i tried many things to help me with the w/d including magnesium which made my problems worse along with b-12 which also aggravated my condition so i discontinued using them. if something doesn't work for you then simply stop using it. luckily for me cbd only helped my situation so i continued to use it. when i felt i didn't need the cbd anymore i stopped using it and i had zero withdrawal or negative reaction to stopping. as a matter of fact, the reason i stopped taking it was because i was doing so well that I'd forget to take it, then simply stopped all together. I'm now free of all drugs and supplements. The cbd reduced my w/d by 50%. i cannot attest to how effective cbd would be against burning leg and body pain as i did not experience those side effects. my main symptom of w/d was anxiety, fear, negative thinking etc. as well as a headache that lasted the better part of two years. I used a cbd topical for the headache that worked wonders. My point is if something is working then keep doing it. If it's not working or making the situation worse then discontinue. good luck and god bless!

I tried very hard to avoid anything else at first, but I was still learning about the withdrawal and did try several things as time went on. I tried a lot of supplements that didn't really help. (I won't list them all, but I probably had 30-40 bottles of things I tried.) I took magnesium (glycinate and liquid since magnesium oxide gave me diarrhea). The magnesium did help calm me a little. My doc prescribed an antihistamine and that made me a little drowsy but didn't help much. I was prescribed propranolol for my fast heartbeat and anxiety, but I didn't want to take that very often when I found out it would probably have to be tapered to get off if I took it regularly. I was prescribed l-theanine and methylfolate -- but they made my burning worse. So, I basically took the antihistamine, magnesium, large doses of B12 and used the lotions & ice packs for relief. Nothing helped enough and I heeded the warnings of others online who said that many things people take to try to help often make the problem worse, so I avoided as much as possible. They kept saying the only thing that really works is time. It takes such a long to for the body to re-set after gabapentin. It's the same with about any GABA drug. Gabapentin blocks the calcium receptors & glutamate in the brain, causing a disproportionate abundance of GABA (gamma-aminobutyric acid -- calming element). Gabapentin can be very difficult to get off because one’s body will adjust to the overabundance of GABA and produce less of its own in order to bring the body back to equilibrium. If taken incorrectly, stopped abruptly, or tapered too quickly or the wrong way before the body can rebuild the GABA, (or if one has built up a tolerance) lots of “uncalm” things can happen (since the glutamate is now running in overdrive -- not being modulated by the correct amount of GABA) -- insomnia, anxiety, intense fear, agitation, sweating, heart palpitations, panic attacks, muscle tightness & pain, twitching, akathisia, tremors, movement disorders, dizziness, digestive issues, breathing difficulties, electric shocks, nerve excitement--burning, itching, tingling, numbness, etc. It takes much longer than most people expect, for the body to rebuild GABA, which is why a slow taper is so important when people are trying to get off. The problems is, docs are so ill-trained regarding the drug that they misprescribe it and also take people off to fast. Then when people develop difficult reactions, docs think there is something psychological going on. So upsetting!

I may have said this before Linda (Gab Brain/Catch 22) but either I've never read (or have forgotten) but this is the best explanation for what is happening and has happened. Despite all my reading, research and work with other groups, it's still hard for me to truly understand why this is still happening. After a few too-fast tapers (for me that meant 2 weeks) I tapered very slowly for 3 years. Yesterday was my 5 month anniversary off gab, but only now am I having more good days than bad, which I know will vary. The depression is gone, the fogginess and memory is better etc.

For everyone else, the reason it's hard to find this info is that once a drug is FDA approved, it's almost impossible (as in 99.9% unlikely) to have a drug completely banned. Drug companies don't want to pay for research into why their drug is bad or harmful, so we're caught in this "anecdotal" situation. They just add more to the lists of side effects, Adverse Reaction Warnings and keep prescribing it.

Do you mind if I copy those details of GABA effects and share them with others? I'll give you credit for it. I think it would help people so much to truly understand what's happening. Just saying that the drug is causing it, to me, is less helpful than reading an explanation.

Yes, Babs. Feel fee to copy and paste it. As you said, it is very hard to find out what the drug does to us because the drug companies don't tell us and it's not found concisely online anywhere. We have to read different authors of books and various articles and studies to find out what's going on and put it together for ourselves. We have to understand how GABA affects the body and then how gabapentin affects GABA. (I noticed there is a typo on my email btw. I said that docs "take people off to fast" rather than "too fast," though that may not be the part you will copy and paste. ) I now live my life to inform people since I should not have survived my suicide attempt. Just like you, I don't want anyone else to have to suffer what I did and of those who are suffering, I want them to know they are not alone, there ARE people who understand, and it WILL end. I am working hard to try to promote more awareness now and continue to contact different people and organizations. It is very difficult to get the medical community to listen, but we just have to keep trying. So glad there are people like you who also keep working to inform others and help provide hope and reassurance. Best wishes to you for many more good days and continued diminishing bad days. Take care.

Sometimes it gets hard to keep replying, trying to help people, doesn't it? There's an endless stream of people being harmed by it, and sometimes I just have to step back. I try to at least let people know they're not alone, it's IS the drug, and there is hope, but it takes a long time.

I've had 4 good days in a row. My last dose was 5 months ago and I had several good weeks before the roller coaster of Waves and Windows hit with good and bad days. I had expected the bad, that's part of WD, but usually there were more good than bad. But that's not been the case, so when I have those really good days, I cherish them and remember that it gets better. But I'm also enough of a realist that for me, this could still last another year or so. But today, I'm more "me" than I've been in about 6 weeks, so I'll take it!

Hi I just wanted to comment if you don't mind. I have talked to a few people on here possibly you as well. Iam suffering everyday from gab wd you are so right about the docs, I suffer with mental health as well and all I feel like is they don't believe me because of my past history. I have been off gab for going into the 10 month after being on it 20 years or more. Still trying to acknowledge the positive changes I have had, but it's tough because I am still suffering from it. The suicidal tendancies I fully understand with people suffering with this. It is a terrible thing to go through. I don't understand why it takes so long to recover from it, it's incredible. All I can say is I am glad I got off of it, everyday is another day toward healing. Take care. Tim.

Babs

I just wanted to say thank you for all your responses, it is good to have people like you who take the time to respond when you are suffering yourself. thank you. It means a lot to those of us who are continuing to suffer from this withdrawal. If we could only get the medical professionals to get on board with this and realize what a horrible drug this is to come off of.

Thank you Lynn. If I could magically stop doctors from prescribing this drug, I would. Ironically, it's not even the best drug for seizures due to it's short half-life. I can't imagine having a seizure disorder and needing to take this medication. For all the rest of us, it's an option. YES, an option, but doctors feel it's part of a whole arsenal of meds so they offer it, not bothering to learn of it's effectiveness or possible damage it can cause. Even in the situations whose use it's been approved for, the studies were relatively small, short-lived and showed only some improvement in about 50% of the people. Compare that to the problems inherent in the drug, and it's a poor choice.

Unfortunately, it takes a long time to really understand how bad this drug is. When I first found this thread, almost 3 years ago, I thought WOW! This has got to be an exaggeration, what a bunch of Drama Queens. Why are they getting so upset? That's because the drug affects our brain, so we can't see clearly that what we're dealing with is not normal. TimBrad, the drug causes depression and those severe negative thoughts. As my WD eases, my mood stabilizes and it lifts. I had low level anxiety and depression, but didn't realize it until this gab mess. I worried that it would come back worse than before. But as I've seen a therapist and gotten some tools to deal with these two (and am older and wiser LOL) she believes, and I'm starting to agree, that it won't be a problem. I'll never be a sunny, carefree optimist, I'm too analytical and pragmatic for that, but I am more calm and even keeled now. Ten months feels like a long time, but in benzo/gab world, you probably have a long way go to. But you'll get there, just like I am.

I started suffering from side effects from Gab years ago, but was told by all the docs it wasn't the gab and kept adding different meds to the gab and going up and down. I got so messed up it was pathetic. I continued to suffer for years. I even had the mental health nurse tell me her dog was taking gab it can't be that if you can believe that. I told her I am not a dog!! I finally figured it out on my own that it was the gab. My doctor even told me it wasn't the gab, and I still feel they don't believe me after all the complaining I have done. I have even given them the forum name to look for themselves at all the people suffering from that terrible drug. Anyway I am off it now for 9 months and it is the worst thing I have ever been through. I try daily to stay positive and know it will stop someday after talking with the people on this forum. If I wouldn't of found this forum I don't know where I would be in my thinking, maybe I wouldn't even be here, because I kept saying I don't want to live the rest of my life with this. This forum gives me hope hearing others that are going through this as well and having them tell me it will stop eventually I just have to keep fighting. With me it has affected my head in a terrible way. But on a positive note I have had some better days as well so I have to stay positive. It makes me so angry and frustrated though that I was put on that crap and kept on it and now nobody wants to help me. I even went to the ER and was told I might have to just live with it because they had no clue what it was that was causing it. When I told the ER doc it was the gab withdrawal she looked at me like I was crazy. Anyway keep fighting and thanks to everybody for letting me vent. I know I have probably said this all before. Thanks Tim.

sorry to hear of your journey tim. but i assure you, there is light at the end of the tunnel. i had to quit gabapentin cold turkey and the first 8months were hell. but by month 13, i started feeling human again and the brain fog started to lift. at month 18 life was muchhhhh better. im now 2.5yrs free of gab and life is great again. my point is, that this is a process of your body rebalancing itself and you will definitely get there. on the harder days you have to remind yourself that its not you feeling this way, its the gab. i found that walking after breakfast and each of my daily meals helped me A LOT and aided my recovery. for the depression i started taking lots of locally produced honey whenever i would feel depressed and it would really lift my mood. as do brazil nuts as they create serotnin in the brain which the gaba depletes at withdrawal. i went through my entire withdrawal organically and kept a very clean diet (nothing heavy on the liver) with daily walk and exercise. it helps immensly. keep up the good fight, youre almost there 😃

Tim, I'm so glad you found this forum too. Considering how many thousands of people have suffered gabapentin adverse reactions and the number of years this has been happening, one would think the medical community would be aware, but I have found no one in my community who gets it and my online group reports doctors' disbelief daily. I want to continue to encourage you that it will get better. As has been said before, the "GABA" brain lies to you and convinces you the suffering will never end. You have to be careful not to lose hope. I'm so glad you've had some positive changes. Please trust those and know there will be many more. Thanks for sharing and venting. We've all been there and understand. You need to have a place to vent where people get it. This is one of those places. I recovered and am 3 years and 3 months off. The 1st 6 months were the worst for me, but the skin burning I experienced lasted for 2 years, though it became manageable after 6 months. Life is good for me now and you will be able to enjoy your life again too. Hang in there. Keep us in the loop.

Thank you for your reply. It really gives me hope to hear someone else that has come through this. I will try some of the things you suggest. Tonight has not been a good night for me, head is numb and cold sweat feeling, very annoying. I will keep telling myself it's not me it's the gab withdrawal. It has been really hard to train myself to be positive when I feel like this, but I decided to check this forum one more time tonight and was glad I did. It definately puts a different perspective on things. I appreciate the encouragement. I hope I can help others as well sometime. Thanks Tim.

Thank you for giving me hope and helping me stay positive with words of encouragement. Really need them, I have pretty much no one but this forum for support. I live alone and deal with it by myself. I try to stay active, l think I said it before I just got a bike and have been riding it as much as possible. Haven't rode one for over 40 years though so you could probably imagine it's been a little difficult lol! I find myself needing to get out and do something when I have bad days, it helps to keep my mind off it a little more. Doesn't take it away but it helps. Take care and thanks for responding and sharing with me means a lot. Tim.

Linda mentioned that she found no-one in her community who gets it. I think things are changing. I started gab 3.5 years ago, so that seems to be after her experiences. Two years ago, when I realized what was happening and had gotten better informed, I started speaking openly about it. I was shocked the number of people I met who were having the same problems. I'd make a casual comment to a shoe clerk, a jewelry saleswoman, an old friend I hadn't seen in a year etc. and they'd say, OH! I'm on gab, I didn't know that's what was causing these problems! At least once a month I met someone and we shared stories. My husband was at PT after a stent and we bumped into an old friend, and I told her my story. I noticed one of the PT staff listening intently. She said EVERYONE seems to be on that drug! I didn't realize what it can do to people, but now that you mention it, I've seen some of that. Bingo, one more informed healthcare worker.

I consider myself Johnny Gableseed, spreading info about this terrible drug, hoping to educate and prevent more harm. A few months ago my sister-in-law called, asking what drug I was on that caused the problems. Turns out my niece was on it, and struggling in college because of memory issues! Luckily, she was on a low-dose and could get off it relatively quickly and her memory improved (she did it faster than I think she should have, but she's young and you couldn't tell her). WE ARE NOT ALONE. Others just don't realize we're out here. When I tried to find info back in early 2017, I searched online for weeks, before I found this group. Now an internet search about gab brings up info much more quickly.

I have been having a lot of bad days lately. I have been trying to stay positive as much as I can. My doctor wanted me to come in and evaluate my situation and put me on more drugs, I said no thank you I am done with those drugs. Again I told her how much I have been suffering from the gab withdrawal and I get nowhere with her, she wont even look at any websites to see how others are suffering. I am trying to make her aware of this drug by constantly bringing it up to her. I wonder if anyone goes through problems with there head like I do, burning, numbness, tingling, aching. It's terrible!! I don't understand how it can do so much damage, and last so long. Going on 10 months off of it. But then I was on it for over 20 years I keep telling myself. I keep running scenarios through my head to keep myself sane, like when it started, and that I have been tested for everything else and nothing has shown to be wrong with me. No other symptoms except the ones I mentioned and a few others, but those are bad enough. It scares me sometimes and I turn to this website for hope and keep reading my messages from people telling me it will get better with time and just hang in there and don't do anything stupid. I hope I don't bother anyone responding to there posts. I read them and relate and respond sometimes in hopes I get more positive input from someone. Keep moving forward I keep telling myself. This site is the only hope I have being that I live alone. Thank you to anyone who listens to me and gives me any kind of support. I need it. Tim.

I'm glad you're coming here for support. I wish there were more we could do for you. Yes, having a doctor who doesn't understand is very hard. I was lucky that his nurse understood and she eventually got him to change his stance. But doctors are ingrained to believe that what they believe is true, that they wouldn't harm a patient and they have the medical degree, not us. Can you accept the fact that you won't change her opinion? That could help you, that serenity prayer about accepting what you can't change is true.

Just one hour ago I teared up today, telling a friend that I thought I'd be further along in healing, it's been 6 months, so I understand. However, as you were on multiple drugs for a very long time, the improvements will be slow and gradual. Focusing on even small improvements and writing them down is helpful. It's hard work, but it does help. On other days, I just accept it's a bad (or worse day) and just get thru it.

Yes, the symptoms you mention happen to other people also. One taper, I had a headache for four weeks, others have them for months on end. I try to get the mindset, oh well, here comes another new problem. I've told people if it weren't me, I'd find it a rather fascinating situation, what all this dang drug can do to us! I feel like a walking science experiment! I did have several months of hard times with this taper, before I had about 6 good days. But now I have a week or even two good weeks in a row. It does happen. "Good week" may mean a decrease, not always an elimination is a side effect. It's when the pain, depression, confusion and memory loss all hit at once, it's the hardest. You can do this!

I have been going through the same thing. I was on gabapentin 800mg for about 3 1/2 years. About 6 months after my doctor put me on them I started abusing them and taking more than prescribed. By the end of year 3 I was taking up to 10 800mg a day, 5 in the AM and 5 in the PM. (I did go through a stage once, lasting about 1 month, where I took 20 800mg a day 10 in the am and 10 in the pm.) I quit cold turkey, oblivious to what was about to happen to me. I was in the worst withdrawals I'd ever had in my life. I had no idea it was going to be so bad, I felt like I was dying and in great fear of losing my life. I had every withdrawal symptom imaginable and some I didn't even know existed. I was in and out of the hospital almost daily because of my super high blood pressure and heart rate. There were times I wanted to give up too. I took a tiny piece of gaba about 5mg and it put me in seizures and made me very sick, I was having adverse effects to it even though it was a very small amount, so if you're thinking about giving up and taking some, I strongly urge you to think twice, and don't do it.

It's been 13 months since I quit. I'm not 100% but I do feel somewhat better. I still suffer from depression and I still have windows where I don't feel so good. My energy level is still low but gets slightly higher as time goes by. This past 13 months of my life have been the worst of my life. I only had my Mom to support me through this, and this forum. Thank you to everyone on here for sharing your stories, they have comforted and supported me through these hard times. I hope I've helped more people become aware of the dangers of taking Gabapentin and the dangers of quitting gabapentin cold turkey.

No one warned me about any of it. Not even my doctor. I had no idea you could get addicted to it.

I was just wondering if anyone has been suffering with their head feeling like it is on fire! This drug is so terrible. Everytime I get down and suffer more with this withdrawal I look on this forum for support because I don't want to do anything stupid because I am tired of going through this. 10 months now, enough is enough my life at times has been a nightmare. I keep hoping the best day by day.

I've been off 5 weeks and 2 weeks ago I had an epidural in my lower back and the pain is just horrible. You mentioned above that the steroid can interfere with the WDs and pain . Do you have any idea that this pain will subside and how long? Desperate!

Irene, I do not have personal experience with steroid shots during withdrawal, but I run a support/action group for people who have suffered adverse reactions to gabapentin and also was an active member of benzobuddies when I was going through withdrawal. Both gabapentin and benzodiazepines are GABA meds (though they affect GABA through different receptors). Members of the benzodiazepine group and my support/action group have reported numerous times that steroid shots exacerbate their symptoms. Thankfully, they also report that the increase in or return of debilitating symptoms DOES subside, though it has taken from weeks to a month or two for things to improve. I am so sorry. Gabapentin can cause so many difficult circumstances for people and it rears its ugly head in so many ways. I do hope your increase in adverse symptoms doesn't last too long. From what I have learned from others, the increase in debilitating symptoms should improve in a few weeks, but should not last more than 2 months.

I hope you don't mind me replying to your post. I haven't been on for a while. Sent a message or reply a while back but didn't get a response. It wasn't to you though. I might have talked to you before, not sure. I have been off Gab for almost 11 months now, when I stopped I was on 1800 a day, but I was on it for over 20 years at different amounts and suffered with side effects for several years before that. My doctor tapered me off way too fast according to everybody on this forum. about six days later I started living a nightmare. Ended up in ER and going to see doctors more than I have ever before. I know how you feel hang in there. I lost my mom a year ago, so it's awesome you still have her. I have a son and a stepdad, but not like good o'l mom. I have thought about giving up sometimes but I still keep hanging in there. I live alone so it's been rough for me. This is the worst thing I have ever endured in my life. I told my doctor I was angry and frustrated with my medical community for ever putting me on that terrible drug, and keeping me on it by telling me it has no side effects or withdrawals. So untrue! I said. Well that didn't go over so well, my doctor blocked my replies to her. Great huh! that's my medical community. I have told them about this site over and over again, and they still wont look at it and see how people are suffering from this crappy drug. As I am writing this my head feels like it's on fire. But it has been better sometimes, those windows and waves people talk about. Anyway if you respond to this or see it great. I wish you the best keep fighting. Tim.