Author Topic: Gabapentin post-withdrawal  (Read 3860 times)

[Buddie]

Gabapentin post-withdrawal
« on: February 11, 2012, 05:51:44 pm »
Hi folks.  I was recommended to this forum by someone on another medical board who said that you're all experts in withdrawal and such.  It's not actually benzos I'm having trouble with in this respect, it's gabapentin, so I hope I'm allowed to post here?  I was told that you're all very knowledgeable about withdrawal in general and that several people here are withdrawing from gabapentin.  I've actually been off it completely for a few weeks now, but I think the taper was too rapid (300mg reduction a week) as I experienced fairly nasty effects while tapering, and it got a lot worse when I stopped completely.  Insomnia is the main thing, together with low body temperature, GI upset, nausea, and occasional bouts of shaking.  Itchy skin, too, which I was put on cetirizine (an antihistamine) for.

Other info: I've got severe ME/CFIDS, and I do use benzos occasionally.  I sometimes use 10mg or 20mg temazepam when my sleep gets unusually bad, though only a few times a year and for no more than 3 nights in a row.  Sometimes I use 2mg valium for premenstrual anxiety, again not for more than a few days.  Recently I've found that 2mg valium plus one or two 30/500 co-codamol tablets works really well for muscular pain or migraine, where nothing else does.  Unfortunately muscular pain is something I get a lot of, and I can have bad pain episodes going on for weeks at a time.  I don't dare use this combination often due to the side-effects and risk of addiction.

Since one of the main problems with the gabapentin withdrawal is that it's completely messed up my sleep, which in turn is making my pain levels higher, I would appreciate advice on how far it's safe to use benzos in treating occasional insomnia/muscle pain while I'm in withdrawal.  I've had to use them more frequently, but I'm worried that this is a really bad time to be using such risky meds.

I've also just had a nightmare weekend due to being put on metochlopramide for nausea, where it was three days before we realised that it was causing the most horrendous effects and took me off it again.  It played particularly badly with the co-codamol and valium I'd taken one morning when I woke up with migraine.  The doctor I spoke to recommended, yes, you've guessed it, a tablet of diazepam to stop the shaking!

I am still learning the basics about what GABA is and honestly have no clue how it all ties together, so please be patient with me, I'm a beginner, and I have brain fog from the ME so I'm not great at reading medical research stuff.  I am trying to work out what on earth has hit me, how it's working, how long it's going to go on for, and how I should work with it.

Current meds and supplements are as follows.  After snooping through the Supplements forum, I'm going to try cutting out the B complex and the multivitamin, along with halving the calcium/Vit D, from tomorrow, and see if that does anything.  Please flag up anything you think I should attend to and let me know why it may be problematic.

Prescribed

Adcal (calcium carbonate and Vitamin D) - 2x daily.  Please note that my Vitamin D levels haven't been tested in years, so I don't know how necessary it is.
Alverine citrate 60mg - 3x daily for general GI upset
Buccastem - taken on occasion for nausea, might try taking it regularly
Cetirizine 10mg (antihistamine for itchy skin) 1x at bedtime

Supplements

Deva One A Day Multivitamin (contains relatively high doses of Bs) - 1 daily
Country Life Total Mins Multi-Mineral - 1 daily
Country Life Coenzyme B Complex (very high doses of Bs) - 1 daily
Dry Vitamin E 200iu - 1 daily
Assorted vegetarian alternatives to fish oils (echium, algae, borage, flax) totalling 2.5g daily
Bluebonnet Beta-Carotene 25000iu taken 3x a week
Zinc gluconate 25mg taken 3x a week
Biohealth 500mg ground ginger - taken 2x daily for feeling cold, might increase that as I'm still not warm enough (though it may be a risk as I have gallstones?)
Lifeplan Valerian Formula 1 capsule at bedtime

Electrolyte/powdered supplement mix, taken throughout day in herbal tea (which includes a bit of liquorice), mainly for Orthostatic Intolerance, low blood pressure etc.  Ingredients are:

Low-sodium salt supplying sodium chloride and potassium chloride
Magnesium citrate (i.e. magnesium)
Magnesium ascorbate (i.e. Vitamin C)
D-ribose
Acetyl L-carnitine

Most of what I'm taking is for the CFIDS/ME, and I'm honestly not sure how much it helps.  The low-sodium salt is probably the only supplement which seems to help in a nice obvious way, plus the ginger for chilliness.

Thanks, guys.
« Last Edit: February 11, 2012, 07:23:06 pm by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #1 on: February 11, 2012, 07:21:19 pm »
Hi [...],

I am a firm believer that food is medicine. I love Dr. Oz and Andrew Weil. Although, I get overwhelmed too with all the info. I don't feel that great and I am on 300 mg seroquel, 4mg diazepam, 450 wellbutrin and .05 estrogen. The better I eat the better I feel but it is hard to get in a good diet when I am just overwhelmed and tired. Personally, I take a good B complex, vit. D, glucosomine & chondrotin (for aches, joint support) calcium too. But we can't always be sure we are absorbing these supplements. Food, (real food) is the best medicine in my opinion. If it rots, than it is real. I think the drugs I am taking are really affecting me in a negative way. I am starting to shake (seroquel?). My heart beat is faster then it should be and my nails and hair lack luster (wellbutrin?). If my stomach is upset the last thing I need is a salad. Oatmeal is good. Nuts are great! Bananas, and when my tummy is ok lots of lettuce. On any hand, I wish I could be more helpful. I am in the same boat as you struggling with what to do with my body. I wish it came with a manual on how to manage it. I have a friend from Greece and she is in her late fifties and says she has not been to the doctor in years. She also is a great cook and eats the Mediterranean diet.
I asked her if she took supplements and she said no. She buys all her food fresh from the farmers market or the natural food co-op. Sorry I don't have more to say about Gabapentin post- withdrawal. Just hang in there. Do the best you can. Good is good enough. I am struggling too.

Thanks for sharing!

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #2 on: February 11, 2012, 07:26:57 pm »
I'm a great believer in a healthy diet too, don't worry.  It's just that high amounts of nutrients are traditional for ME, for a variety of reasons which include possible malabsorption, not to mention that the soil is so depleted these days that fruit and veg have far fewer nutrients in them than they used to.  I'm vegan, I eat a wholefoods diet, and right now I have to eat a very low-fat diet because I have gallstones, so I can't eat much in the way of nuts.  It's funny that you mention oatmeal.  I was eating oatmeal/porridge for breakfast regularly before, but once my sleep and eating patterns got knocked out by the withdrawal, I've been getting up too late, too sleepy for hours after I rise, and generally too exhausted to make oatmeal.  I do sometimes grab oat cakes for breakfast, though.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #3 on: February 11, 2012, 07:39:10 pm »
Wow! You are a vegan! Now that is a commitment. I agree with you about the soil not being so rich. Do you take B12? I hear that vegetarians and vegans need to make sure they get this as it is in meat products. One documentary that Oprah said everyone should watch is Food Inc. Have you ever seen it? It really changed me. I also love Michael Pollan. I have taken Gabapentin before and it gave me more anxiety. My doctor prescribed it to me for anxiety. My body did not like it at all. Those Gaba receptors are really important in your brain. Good luck [...]!

[...]  :)
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #4 on: February 11, 2012, 09:11:06 pm »
Don't worry, I've been vegan for years, it's actually quite easy!  B12 is amongst the vitamins I take, plus I eat foods which contain B12 (it's a myth that you can't get it from plant sources).  However, I might try a few days off the Bs to see how I do.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #5 on: February 12, 2012, 12:12:18 am »
I would love to know how being a vegan is easy but I don't want to monopolize your post and the real reason you are here which is the Gabapentin post withdrawal. Also what is ME/CFIDS? I hope others will address your issues. I don't have the answers. I would love to hear from the experts too!

[...]  :)
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #6 on: February 12, 2012, 04:29:42 am »
First:  There is NOBODY here who is an expert in withdrawal.  I'm sorry somebody told you that.  There are a lot of people here with experience with helping others through  withdrawal, primarily benzo withdrawal.  There are a lot of people here with harrowing personal experiences with withdrawal from benzos and other drugs, and equally harrowing experiences just with taking psych drugs.  But there are no experts.  This is a peer support forum, not a medical or expert forum in any way.

Second:  Your medical condition and mixture of meds and supplements is so complex that I  personally would never try to advise you regarding specific meds and amounts, specific supplements, et cetera.  And if anyone does, I would recommend you question that person's credibility, because someone who's been around a while and has experience with this stuff has figured out that it's impossible to give that kind of specific advice on an Internet forum except in the simplest of cases.  Which yours is clearly NOT.

As far as the safety of benzo use,  I do have some information about that.  Unfortunately it takes very little use to develop dependence.   After two to four weeks of daily use, most people develop withdrawal symptoms if they try to quit.  So using benzos is playing with dynamite.  You may be able to get away with once or twice a week for a short period of time, but daily (or nightly) use leads to dependence, inevitably, and fairly quickly.  Some people do seem to be able to get away with intermittent use, though.

And as far as gabapentin withdrawal, it's incredible to me that the drug companies just refuse to admit it's a problem.  I had a TERRIBLE time when I tried to CT off 1200 mg a day.  I became extremely suicidal.  It was horrible.  When I first began my taper (off 300 mg) it was very difficult for a while, but once I got under 100 mg it got easier.  I'm now almost done with the taper and even at these low doses (under 25 mg) I still have to taper, I can't just quit.  So  you are definitely not alone in that.

You have my best wishes for everything you are having to deal with.  Just remember, this is the Internet; it's a wonderful thing, a beautiful thing, I love it, but it's buyer beware, as always with the Internet.

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #7 on: February 12, 2012, 05:20:47 am »
I have recently posted that i truly think neurontin is a med in search of a disease. 8 years ago, a co-worker was Rxed it for migraine headaches. It did not help her and she ended up on something else. I have also seen it Rxed for menopausal hot flashes. Another co-worker uses it for nerve pain which seems to be the current most common use. I think use ofthis drug is definitely an individual decision.

You definitely do have a very complex array of medications and supplements. I am not a doctor and would not presume to even begin to advise you on all that other than to say it kinda seems like a lot. I would definitely cut out all those vitamins and other supplements: in this case less is more. That suggestion that food is medicine is right on target. I am also a vegetarian and have been one for 12 years. I would advise giving that a shot, although to do it properly and enjoyably, it usually takes some effort before it becomes second nature.

As far as the benzos, all I can say is be very careful. This forum is Benzo Buddies. People here are seeking to get off them and will or should react to anyone who uses them as they sneak up on you, and then they become a HUGE problems.

I'd really start  by dropping all those supplements. They all have to be metabolized through your liver just like all those meds. Then I'd try to sort through all those meds with your doctor and try to get off as many as possible with consideration for your health conditions. I'd cut that taper of neurontin to a slower dose (not an expert on tapering this med), I watch that benzo use cause dependency starts fast, and since you're invested in eating healthy, try vegetarian.

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #8 on: February 12, 2012, 05:49:39 am »
Quote
From [...]:

First:  There is NOBODY here who is an expert in withdrawal.  I'm sorry somebody told you that.  There are a lot of people here with experience with helping others through  withdrawal, primarily benzo withdrawal.  There are a lot of people here with harrowing personal experiences with withdrawal from benzos and other drugs, and equally harrowing experiences just with taking psych drugs.  But there are no experts.  This is a peer support forum, not a medical or expert forum in any way.

No doubt.  There are NO experts.  If there were, we would not need a forum.  We would not need this kind of support.  Thanks for bringing this fact into the light.

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Gabapentin post-withdrawal
« Reply #9 on: February 12, 2012, 11:55:45 am »
Oh dear, I didn't mean experts in the sense of doctors.  I don't expect anyone to give me medical advice or make decisions for me, and I'm glad to see that this forum is so careful about that.  But there does appear to be a wealth of patient-led information and experience, and used appropriately, that is a very valuable thing.  Especially when all I have got from the medical profession is a denial that gabapentin can cause withdrawal at all, and no help whatsoever in coping with the problems that it has caused me.  What I'm looking for is information to help me make my own decisions.  I have no idea how long this is going to last for, and that's something it would be really valuable to know for planning the future (I'm due for major surgery in a few months, for instance).  I know nothing about how GABA and GABA receptors work, and due to cognitive problems (brain fog) I haven't been able to understand the fairly complex explanations I've found.  I also don't know how this relates to gabapentin; some people say it does, others says it doesn't.  Someone on another forum was saying that it's something to do with calcium channel blockers, and I don't know what those are either!  And I don't know anything about how going through this post-withdrawal is likely to affect how I get on with other medication, apart from what you've all mentioned about my liver being under additional stress.  I had a liver function test a few weeks ago and apparently it came out fine, by the way.

Supplements - advice duly noted, thank you.  I've decided to pull the multivitamin and the B complex to start with, and see how I feel on that.  If need be, I have a bottle of a relatively low-dose multivitamin (Deva Tiny Tablets) which I could use, but I'll see how I do.  I prefer not to make too many changes at once in the interest of working out what causes what.  Are there any supplements in particular which people here often find are problematic?  I recall Vits B and D being mentioned, and also Omega 3 oils (fish oils or alternatives) looked as if they could go either way.

In terms of other medication, thankfully none of the regular meds are terribly important.  I'm certainly not going to come to any serious harm if I come off them, though I may have a certain level of discomfort.  The alverine citrate does seem to be helping my GI tract so that one I'll keep.  I don't know whether I still need the antihistamine, perhaps I'm not getting itchy skin any more, so once I've settled down from taking out the B vitamins, I may try removing that and see how I do.

Being vegan - really is not up for debate, and I'm not planning to change it, especially considering that I'm lactose intolerant.  I just mentioned it as a useful bit of info, just as I could mention that I'm female, in my thirties, have gallstones, and am not on any form of hormonal contraception.  I do well on a vegan diet and I do monitor what I'm eating, since I've just finished losing some weight (and have to keep an eye on fat content due to those annoying gallstones anyway).  I'll keep an eye on sources of B vitamins in particular, since I'm pulling some of the supplements.  Nutritional yeast, here I come!

CFIDS - easiest to google that if you don't know what it is, but basically it's a highly disabling neuro-immune disorder.  It's poorly researched, little understood, doesn't have a cure, doesn't even have universally effective treatment for symptoms, and most doctors don't have a clue what to do with it.  This means that there is next to no information on how people with CFIDS react to gabapentin, or to benzos come to that.  Although sleep disorders are an integral part of CFIDS, and you would doubtless be horrified to see how many people with CFIDS are on benzos as a matter of course for sleep.

And yes, I'm aware that benzos are madly dicey things and that is why everyone else is here!  The thing is, all medication is potentially harmful and it's a cost-benefit analysis.  Severe pain is also harmful, so is going a night without any sleep.  Being suicidal from PMDD (the severe form of PMS) is seriously risky, though thankfully I don't get that every cycle and don't get it for more than a day or two at a stretch.  The annoying thing is that addiction risk aside, and so far I've managed to dodge that bullet, benzos are one of the few drug groups I can actually tolerate well.  So occasionally they're worth using, it's just that I am very wary about using them in such a way that they're useful without setting myself up for further problems.  If it's any help, I've been using them for occasional use for years without developing problems with dependency (unlike, say, a time when I had to take co-codamol for a solid month for calcific tendinitis and had a nasty week after I came off it), and will generally take about six months to get through fifteen 2mg tablets of Valium (at least, when I'm just using it for anxiety; I've been using it more now that I've found it helps for pain control, but more about that below).  I check in with my GP regularly about this, since I'm concerned about any problems arising.  It may also be worth knowing that as CFIDS patients tend to respond badly to most meds, we're all very wary about taking meds of any sort and err on the side of taking less than we need.  (Necking down the supplements like nobody's business, though, but that's another story.)

The main things that concern me with benzo use at the moment are that, well, I seem to need them more at the moment, and I'm guessing that it's the time when I'd be more vulnerable to building up a dependency or having other problems.  Come to that, the first time I took co-codamol and valium for migraine while I was on gabapentin, the combination over-sedated me and I fainted the next morning.  Can't win with this stuff.  I've been much more cautious with that combination ever since, and ironically it means that when I really need it, I often can't take it because I'm already feeling too exhausted and at higher risk of fainting.  (It's a bit like getting chocolate cravings when premenstrual - last thing I should eat, as I get menstrual migraines and chocolate is a migraine trigger for me.)

Anyway, I've been badgering my GP about trying muscle relaxants instead of valium to use with the co-codamol for pain, since that's the action of the valium that is useful in that context, and that's also a situation where it can be needed for longer at a stretch than I feel comfortable with.  For some reason she just doesn't seem to like muscle relaxants, I've never been given one to try, and when I reported that the valium/co-codamol combination worked for pain, she said There you are, the valium is working as a muscle relaxant, you may as well stick with that as you know that you can tolerate it.  Does anyone know whether muscle relaxants are likely to cause the same problems with dependency as valium?  Baclofen is a popular one, for instance, and I gather that it's a GABA agonist, whatever that means.  I really hate being stuck without decent options for pain control, since pain is a pretty major problem for me.

Sleep's the other problem.  I realise that lack of sleep is horrible for everyone, but with CFIDS it can cause a rapid and nasty deterioration.  The number of hours I sleep a night is slowly getting back to normal, I think, but my sleep onset is still delayed.  I practice darkness therapy (a method for encouraging natural melatonin production) to help me sleep, which usually has me getting sleepy at the right time quite beautifully, but right now it feels as if it's hardly working at all.  Does withdrawal interfere with melatonin production or something?  I'm occasionally using 10mg temazepam for a few nights in a row, usually three, to try to move my sleep onset back to the correct time, but it seems to slip out again before too long.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.