I want some advise on Gabapentin and if I should continue using it?

Hey USRider69,

Thanks for your reply! That makes me feel a lot better with what you've said about the dosage. The maximum they want me to go to would be 1200mg daily, but honestly if 300mg twice is working for me I may just stay like that if I am seeing some benefits.

That's crazy that you experienced such a drastic side effect from just taking the 100mg initially. I have only had 2 doses of 300mg so far and I feel relatively normal except a bit tired. I also noticed I was slightly calmer when in public, but that just could be a Placebo effect.

On another note, I am a young man in his early 20's and all of my social life pretty much revolves around drinking with my friends. Is that something that would be safe? I have been drinking for years on SSRI's, though they tell you to avoid alcohol with not too many issues. Would it be a case of avoiding it completely? If you aren't a drinker that's fine, and thanks again for your reply!

Hi, thanks for your informative reply and letting me know your experiences with it. Its funny because I did see it can cause the eye movement issues in patients so I'm really not sure what the logic is with it perhaps helping me?

You describe a numbness in your brain sensation? I don't want to be numb honestly, I have enough of that from the SSRI's I am currently on, so anymore brain fog would make me feel useless and feel like I can't take any information in.

Just to give you a bit more info on their plan for dosage for me; I'm currently on 300mg just in the morning, then it will be 300mg morning and night until I reach 600mg morning and night. The increase will be every week so it will take a month. So the maximum dose I will be on is 1200mg. They have left the ball in my court whether I want to take them or not so thanks again for informing me on the med! 😃

Here's what I can tell you about the recommended dosing. It should be given 3-4 times a day (usually 3 times) as it has a short half-life, meaning it's excreted from the body relatively quickly, 5-7 hours. That DOESN'T mean the side effects and problems disappear in that time frame. Some people are so sensitive to it, that they get inter-dose WD symptoms. Some wake at night because of it. That's not common, but it occurs. Most people take it at regular intervals (I take it with meals, as I get dizzier and feel the effects more on an empty stomach) such as 7:00, 3:00 and 10:00.

Yes, brain fog, confusion, memory loss (short and long term) cognition issues such as working with numbers or comprehending oral directions are common. Yes, I feel and felt numb. I wasn't "me". Only as I decreased, did my real personality come back. Call it low-grade depression, being drugged/medicated or whatever, I had a flat affect. Some people get rage, some mild euphoria (hence why some use it to enhance the "high" of other drugs.

As far as drinking, you know that technically those on SSRI's should avoid it, as the side effects can worsen. I don't drink, maybe a 1/4 -1/2 glass of wine every few months. When I had even smaller amounts than that, I felt a little drunk. So I can't.

I'm not surprised that USRider had problems immediately, that can happen. The worst thing about the drug is the way we react is very individualized. I can list common side effects, like weight gain, increased depression and suicidal thoughts (yeah, that's LOTS of fun), but we can't say if or when an individual will get them.

The good news is, you're going into this experiment MUCH better informed that the rest of us. I'd say 95% had no idea what could happen from this drug. Also, there are people who have few problems on it or getting off it. But I think there are others who don't realize some issues they have are from the drug, so they don't tell their doctors.

Good information!

I discussed the 3x daily regimen with my ortho guy as that seems to be the most common dosing, but he insists on 2x daily. Since I'm not getting a lot of pain relief from the Gabapetin alone, I've been taking a 500mg Tylenol 3x daily, which does the trick.

USRider, I take Tylenol too, when I first got sick it was 4 times a day of 2 500 mg, now it's 3 times a day with a 325 and a 500. I also use Aspercreme pain cream with Lidocaine with seems to help.

As you don't think the gab is helping, are you considering getting off it? If so, please know that it may not be as easy as your doctor things. Sadly, very few doctors understand the problems. There's also no way to predict how our own bodies will react, whether it's a high or a low dose. I'm in a group which recommends a widely helped belief that 10% or less over 4 weeks or more will make for an easier taper.

There can be long-term side effects of gab, such as memory loss, decreased bone density etc. It's not a benign drug. I realize you trust and believe in your doctor, but they all have their blind spots. Remember they get their information from sales people. Most doctors are totally ignorant of gab's side effects and to say "you'll have no problem" shows that he's not familiar.

Thanks for the advice! I intend to discuss this with my ortho doc. I truly don't think I need the drug.

Thanks for the information guys, I have carried on with it since and the main issues I'm getting are feeling spaced out (which has reduced anxiety), I am incredibly fatigued all the time, and my sleep doesn't seem normal. (I am dreaming all night, very vivid, lucid dreams). I am sure these side effects will wear off, but I am definitely going to bring this up with my Doctor. It is very strange because I feel like I am getting a lot done in my day, but I feel physically and mentally exhausted with constant bags under my eyes.

Drinking alcohol over the weekend definitely made me feel more tired and I got drunk in barely any drinks compared to my normal self. I decided to pack it in for the night after 4 drinks.

I'm impressed! LOL Even on a good day without Gabapentin I couldn't down four drinks without passing out. I'd say that's not much of an issue!

I do want to add something new I discovered. I'll preface by saying, I had a kidney procedure on Thursday of last week--replacement of a temporary ureteral stent with a more permanent one--which meant I was on an antibiotic, those nasty red UTI pain relievers (I only took three, total, and there are no side effects listed for that) and had had anesthesia, so when on Sunday I developed tremors and jerky movements in parts of my upper body at random times, I naturally called the urologist. He had no clue why that would be happening and I couldn't attach the symptom to any of the new drugs or to the propofol.

It wasn't until yesterday that I thought to check the list for Gabapentin. Sure enough, tremors are one of the most common side effects and can come on months into use. Great! All it took to stop them was .5 mg of xanax, one single dose approved by the urologist, but it was a little alarming at the time. According to the package insert, they do go away on their own, so nothing to be seriously concerned about. I just thought I'd share that as a forewarning.

Why do we have to be the guinea pigs? Sadly USRider, taking anesthesia, pain meds, even antibiotics can start a resurgence of the WD side effects. Adding the xanax may have helped sort-term, but it's a benzo, so...oh my gosh, I keep sounding like the voice of doom! Sorry, but the truth is adding a benzo can re-trigger also. The tremors will likely decrease and go away, yes, however until the brain has totally recovered, the neurons, synapses and all those other things that make the brain work, are working properly, these problems can reoccur.

Levaquin, an antibiotic and similar drugs like Cipro can cause some of the same problems. It's best known for causing spontaneously ruptured tendons, but it can also cause psychotropic problems . I had a serious infection, was put on it and had, what I later realized, a panic attack. I hope you're on the way to full recovery soon.

Beez, I'm glad you understand that alcohol will exacerbate the misery.

Hello to both of you again, I feel at a breaking point with this medication at the moment. I simply cannot sleep anymore. I go into the most vivid and lucid dreams, but the sleep is so light I wake up about 10 times a night and get up with bags under my eyes feeling exhausted. That trade-off is really putting me off continuing them as I was in a rather good place productively and now I feel like a mess. Is this a common side effect and will it go away? Thanks.

I appreciate your input. Since the tiny dose of benzo worked to stop the spasms and they haven't returned, I'm going with "that's an okay thing to do" under certain conditions, as the doctor said. I know. It's a pain being guinea pigs. I grew up in Big Pharma and have been a guinea pig since I was a baby...literally. You have me to thank for No More Tears baby shampoo.

Meanwhile, I've found that splitting up my doses of Gabapentin (300 mg AM, 100 midday, 200 PM with one 500 mg Tylenol each dose) has both reduced the side effects and increased the effectiveness without increasing the dose. Sometimes we patients have to improvise and report the outcome to the doctors as they only have what the pharma companies tell them to go on, and there's always that disclaimer that there might be other, unreported effects that need to be reported as they occur. It's teamwork. Twice I've reported unexpected, near-fatal and fatal effects of veterinary-use drugs to the FDA and to the makers, and both times they got right on fixing the problem and adding the effects to their package inserts.

BTW, I can't take Cipro anymore. I had to take major doses of it during chemo 12 years ago, and it burned out my system's ability to cope with it. Again, these things happen and need to be reported when necessary.

I'm so sorry you're having such serious side-effects! If I were going through that, I'd be burning up my doctor's phone. FWIW, when I mentioned the anti-depressant effect of the drug and that it had worked to keep me from needing any Xanax (not counting the tremor episode) since I'd been taking it, he corrected me and said that it has multiple psychoactive properties and the results are different for different individuals. Maybe you just can't handle the psychoactive effects and need an alternative.

I wish you well! This has to be tough.

Beezwax, please ignore my other reply. It's currently being moderated. I thought that you had said you used a few joints to help you sleep. That must have been in a different thread, posted by someone else. It's hard to keep these all straight. I truly apologize. I went back to re-read your comments. If I were you I'd stop using the gab, but you should still do that carefully. It seems you started it about a week ago, I'm not clear as to your dosage now, but if the drug is causing problems like this now, who knows what other problems will show-up.

In case my other post doesn't get approved, I'll repeat some of the info. Yes, gab causes vivid, disturbing dreams, it can also cause insomnia. More often you see that during tapers, but what happens during the use of it, often crops up as you decrease it. I can't say how long these will last, but as you were better before, why keep taking it?

USRider, you do seem to have a good handle on this. There are so many others that make very bad mistakes, and it's so difficult to undo those. Your dosing may sound odd at first, but it's really quite close to a balanced dose schedule. And as I'm tapering, it's similar to my 200, 100, 100. I also agree that using Tylenol or NSAID's can be very effective for pain. I think sometimes my previously prescribed NSAID has done as much or more good than the gab.

I KNOW I should report these ADR's to the FDA, but for some reason, I just don't take the time. I guess I feel so jaded and betrayed, I wonder if it will help at all. They just seem to only add them to a long list, which doctors, patients and pharmacists don't seem to look at! I'm glad you're doing better.

I can't remember if I mentioned that for me it's paradoxical. I do seem to get a slight calming effect at times, but other times it's caused serious depression and suicidal thoughts. I can also be short-tempered (just ask my dear husband). Well the short-tempered part may not be new LOL! In other words, be prepared for anything.

Hello babs99203,

We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

Kindest regards

Patient

Good information!

Unfortunately, I'm unable to take NSAIDS right now while I'm undergoing kidney treatment and surgery for a random lymph node crimping my ureter. I took a prescription NSAID for years--probably about 12--and had good results. I didn't know how good the results were until my blood work showed stage 4 kidney failure and I had to stop all of them. Boy, did the pain come back full force! I have osteoarthritis in many joints and in my lumbar spine, so the difference was notable.

Yes, my regimen is very much like yours. I'm going to give it a few more days before I declare it a total success. The doc had told me I could cut the night dose to 100 mg from 300 mg to avoid the night vision disturbance. I didn't think going any lower than the daily 600 mg was a good idea, so I'm trying to stay as close to that as possible at least until my next update visit in a couple of weeks.

Don't allow yourself to become jaded. That feels like quitting, and that can be depressing even without a drug! Every report we make is one more step to changing the drug or at least the warnings. Pharma companies won't do anything once the drug is approved unless they have significant reported effects that could lead to legal action in the future if ignored. For instance, when we had a horse try to drown herself after a dose of a vaccine because her airway closed, she was diagnosed with an aluminum allergy and the maker was alerted by us and by the vet. They immediately removed aluminum from the ajuvent. That's a pretty quick response and valuable to us and others going forward.

Besides, reporting gives me a sense of control in this uncontrollable situation. It's worthwhile if only for that fact. I'm a control freak, unabashed and unrepentant. Anything I can do to help myself feel as if I'm somehow contributing to a solution to a problem gives me peace.

Well that was a very sweet comment from their resident bot. It must have referred to my comments about serious depression I had one year ago. I'm fine, always was safe, got help immediately and never contemplated self-harm. I knew the twisted thoughts were from the meds. I just wanted others to know that just because you hit a very bad patch, it doesn't mean that it will last. Since then, I've never gotten that low again. It's like a switch went off. Thank heavens.

I DO want to ask more about the "No More Tears" but I've been online too much the last few days and now that I'm feeling so much better, I'm eager to make up for lost time like in cleaning closets!! I too am a bit type A, and will put the ADR on my too-do list.

Your comment on the NSAID's worries me a bit. I know that they can be hard on the kidneys, but all my previous labs looked good. However, I haven't had them checked in a few years. My doc is retiring, I'm seeing a new one and should probably have a Creat and BUN done. However, I pay for my own insurance and with a $6500 deductible, I know that will be a lot out of pocket. Yeah, Yeah, don't say it...I've been on them for 25 years. I have some weird thing, take your pick, called either calcific appetite tendinitis OR rheumatic soft-tissue syndrome. Basically I kept getting severe pain in my shoulder, hip and elbow. For some reason my body makes random calcium deposits (call me an oyster) and I get chronic bursitis and tendinitis. They never found a cause. but the NSAID's help control the pain and kept me active. I've tried cutting back in the past, maybe I should again.

BTW, I see I had a typo, I'm at 500 mg/day 200 100 200. I did see a cognitive improvement when I dropped by 600 to 500. But because the way this drug works, I wonder if the improvement could actually be healing from previous drops. I take 8-10 weeks to drop.

LOL Well, I was a cranky baby back in 1948, and my dad was a chemist at JNJ at the time, so finding a solution to the raging fits I threw at bath time was a priority, hence the "No More Tears" shampoo. You're welcome. When he became Direct of Research, we got Tylenol, which was his pride and joy as it was a "painkiller with no side-effects" (we know that's not quite true, but compared to what was available at the time, it was a vast improvement).

From what my docs have told me, Ibuprofen is the worst of the NSAIDS, and since I'd taken max doses for two weeks after a back injury, they were quick to blame the total NSAID population for my apparent kidney failure. I'm still banned from taking them, despite the fact that the lymph node was discovered and that the stent apparently hasn't improved my kidney function as I just had blood work done two days ago and the results show even higher creatinine than two months ago. It had decreased noticeably and looked like I was headed for full recovery before the stent placement. Bummer. I would love to take just a few Aleve or whatever to help with the inflammation in my leg, but I'm stuck.

Perhaps I haven't seen the cognitive impairment as much as I'm on such a relatively low dose of Gabapentin. Maybe my brain is sinking and I just haven't noticed with all the other issues. I'm not going to guess. I'm seeing the ortho on Wednesday and I'll discuss all of this with him then.

Cranky Baby changes the world! Who knew? Congrats and thanks to your Dad, at least in our thoughts. I have very high regard for scientists and engineers. Oops, I'd better change the subject before we got off topic. That's a shame that your creat is still high. When my sister when off NSAID's because of that, hers dropped very quickly. Could this also be related to the surgery and it will come down as the healing continues?

Be glad you didn't get the cognitive issues. There's no way to truly know how many get more physical (ataxia, tremors, akathesia etc.) vs mental (depression, memory loss, aphasia) as there were no large scale, truly long-term studies on the drug. As I'm in groups that are self-selected, obviously 98% of the people have had adverse reactions. So we're all just flying blind, guinea pigs for big pharma.

I never thought I'd feel like that. I've worked in healthcare as a medical secretary for over 30 years. So I have both a healthy respect and healthy cynicism of the medical world. When I first read the negative forums, I thought, come ON, quit exaggerating, this can't be legit! Until it happened to me. That's my long way of saying, that some people either don't get problems or get few problems, but we don't now the percentage. But I have a friend on a very low, first dose, develop tardive dyskinesia, a life-changing movement disorder. I wonder if better screening before giving the drug would help. My idea is do NOT give it to anyone who had a previous reaction to floroquinolones, anxiety, depression or a family history of tremors such as essential tremor of Parkinsons. The doses should be as low and as short-term as possible. Do NOT use it for a myriad of off-label uses. They've been proven to be ineffective.

You have great insight into this issue, especially the self-selected groups part. I'd been thinking about that over the months. I came to this site originally because I wanted to compare my reaction to Amlodipine with that of others. Gabapentin falls into the same category of drugs haphazardly prescribed, popular among docs for no reason in particular, and poorly researched in terms of side effects.

All four of my current docs just nodded approval of the Gabapentin prescription. I guess it's the current fad non-opioid drug for all sorts of off-label uses. That doesn't give me a warm feeling. Not only did I grow up in the animal testing lab at JNJ (and with a bathroom full of bottles with hand-typed labels like "Project xxxx" and the like because human testing wasn't very rigorously managed), but I have two doctors in the family, a surgeon and a Chief of Medicine at a major hospital. Like you, I have a full-blown distrust of the medical world.

I suspect many "benign" drugs amplify already-existing (but partially dormant) symptoms in patients. It's just my theory. I'm a psych babe, not a chemist. I understand how easy it is to become part of a group like this and begin to attribute all sorts of symptoms to the drug being discussed. That's my area of expertise. I don't understand the medical parts and have no idea why my creatinine level rose after all this effort to reclaim my blocked kidney. I have a urologist who draws pictures on a white board for me, so hopefully after Monday's meeting I'll have a better grip. LOL Still, it's nice to be able to compare notes with knowledgeable and experienced people like you.

Nice to meet you!

As a line in an old movie went (I believe it was White Christmas, said with a strong Bronx accent) "The feeling is mutual". I too work hard to not attribute gab to every symptom and side effect under the sun. But after reading posts from 100's of people the last two years and reading pages of reports and drug company/FDA warnings, I find there are many, many problems caused by this drug. When I think that something can't possibly caused by it, I find a number of people with the same problem (such as joint issues and even odd swelling in the joints) and then find it listed in a side effect sheet. And as I decrease the drug, the symptoms ease.

Like Levaquin, who would think that spontaneous tendon ruptures, particularly Achilles tendons would occur. Have you met people with biceps tears? Ask if they've taken a statin. The answer is yes, how did you know? On one hand, I find it fascinating to unearth the research, but it would be MORE fascinating if I weren't the subject of the experimentation. My curiosity has brought me into contact with several researchers and scientists, including someone who helped over-see the grant-seeking process at Northwestern, the "home" of Lyrica. That was fascinating. His wife worked for Abvie. I wish I had known more about the drugs back then and maybe I could have gotten more concrete information. So when people criticize support groups or internet advice, they should know that while some of it IS dreck, there are many supportive, knowledgeable people. I try to not over-step my bounds, and I'm sure at times I do, but it's a shame how so many people have such a limited basic knowledge of doctors and health issues. I have to remind people, if you're having a problem with a drug, talk to your doctor. You're partner's in this, and you need to work with him. It's YOUR body. If you have questions, ask him or her.

When people talk about the doctors are prescribing the drug just for money or because they don't care, I disagree. I say it's usually because it's force of habit, they have outdated information and they just are ignorant of the drug. They heard a salesperson or colleague recommend it, and never looked back.

Well said as always.

On the other hand, there are people like me who have taken Levaquin and Cipro (the other evil giant) without any side effects until the Cipro finally made me itch and twitch. It was prescribed prophylactically when I was undergoing chemo and they didn't know I could do self-injection. When I assured them I could, they switched me to Neulasta and Neupogen (I was on Day 1, Day 2, Day 8 chemo regimen, taxol and platinol, IV and IP, so one was daily and the other weekly) so the drug combo (quintuple dose of Dexamethasone the night before, and there's lots of steroid thrown in with the chemo along with a massive dose of Benadryl) provided interactions that are pretty much the rule. The result was fantastic, but the bone pain was epic. I thought my thigh bones were going to explode, but the other option--long-term Cipro--was palliative, not curative, so I sucked it up and came through with flying colors. I like to share that kind of information as well as the negative. It's important to weigh the outcomes with the side effects.

I couldn't agree more about why some docs prescribe certain meds. I have a feeling Gabapentin is one of those knee-jerk options now that opioids are so strenuously limited. Same with Amlodipine, which does have some serious and really obnoxious side-effects.

BTW, I've stopped the 300/100/200 regimen as it wasn't working anymore. I'm back to 300 mg BIS with 1000 mg Tylenol in the middle of the day to bridge the half-life of the Gab. What a PITA it is to run personal trials on this stuff! LOL

Yes, it's a pity AND a PITA. I agree that we need to share the situations where there's not a problem. It's easy to to over-generalize (BTW, I'm VERY proud I could find that word! Another side effect for me with my cognition issues, is my decreased vocabulary. Now that I'm down to 500, my inner thesaurus is working again). My sister seems to have little problems with gab, but Lyrica was awful for her. But because there's not real research, we're left to play Russian Roulette.

BTW, you're too kind in your words. BTW, I'm not familiar with BIS, BID, yes, but not BIS. Oh, thanks Google! It's not in there, but I'm assuming it came out of the BID definition. For others, BID is short for a Latin phrase and means twice a day, TID is three times, and just for fun PRN means as needed.