Gabapentin (Neurontin) Withdrawl Support Group

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You both are amazing, thanks,  you've really made my day better.  Made me chuckle a bit too!  I didn't want to whine on the long hold thread. That's more for encouragement, though I am following it. I needed to put my miserable Gabapentin problems here😁

 

Didn't wake up burning for 2 days in a row then it happened again this morning on day 7 of updosing. I take the tablets at 8am, 4pm, and 11pm, and by 7 - 7.30am I wake up like that. Its just so freaky. It doesn't last long thankfully then a few more times through the course of the day. Im worried that if I ever truly taper right of this that I would have to tolerate a lot more burning and maybe permanently.  Also the heart palpitations (singular, and strong about 5 at a time out of nowhere), I'm worried they would become more frequent too. 😕

 

I'm very glad you are getting breaks in the burning. I think that's a good sign. Really, I think you tapered crazy fast and that's what's causing this. Once you have stabilized, there's no reason you won't be able to taper slowly off the gabapentin.

 

I know all these symptoms are distressing, but dwelling on them is going to be even more distressing. I know because that was my first reaction to my pain. I am naturally a person who likes to go out and fix things. Withdrawal was something I could not fix. So I had to learn a new way of thinking. I am learning to live in "right now" rather than worry about what might happen. Here's something that's helpful I learned from my mindfulness practices. When you find yourself brooding about  stressful thought, ask yourself, "Is this thought helpful? Is this thought necessary?" If not, "change the channel" to thinking about something else. I know CBT tells you to challenge thoughts by asking if they are true. I usually don't find that helpful or necessary. It just get me arguing with myself, which adds more stress. I much prefer asking myself, "Is it helpful? Is it necessary?" To help me develop the habit of recognizing unhelpful thinking, I wrote those things out on a cards on put them mirrors and countertops. And I moved them around so I wouldn't get used to seeing them and ignore them. That's helpful and necessary! It was hard work at first, which annoyed me, but the more I did it, the more natural it became. It's now more of a habit and not as hard as it was when I started. And my mind is more at peace.

 

Here's way of looking at suffering. There are two kinds of suffering: primary suffering and secondary suffering. Primary suffering is the direct experience of the pain or other w/d  symptoms. Secondary suffering is when your brain alerts and alarms in response to the pain. And then it tries to push the pain away, to get rid of it. That's more work and creates more focus on the pain! It is natural for the brain to do this; it is programmed to find and eliminate danger. But hyper-focusing on chronic pain is actually not necessary nor helpful. Focusing on the pain, on what might happen, on how long this is taking, and all the things we think about in withdrawal creates secondary suffering. Even when you can't get rid of your primary suffering, you can still greatly reduce your secondary suffering by not battling your pain. Meditation and mindfulness practices (the kind that help you accept your difficulties and notice when you're brooding about them) teach you to do this.

 

That was kind of simplified. There's more to it. I learned it mostly from You Are Not Your Pain, which is all about reducing secondary suffering. It took me a long time to work the practices into my life, but it was worth it. It gave me my life back.

 

About your dosing and symptoms, Cant has some good thoughts. I'm all for reducing primary suffering, too. Long Holds and slow tapers are all about that. I have seen this work for so many people. I believe it will work for you, too.

 

Gard

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Hi can't fly, and Gardener. Thanks you're replys have kept me going. I'm listening to everything carefully. you're putting up with me really well!

 

Its day 8 today of updosing, and still no better. Also delicate/nausea trying to eat. Which Ive never encountered before. It was especially bad at 300mg. This is what I'm worried about. My Dr could make me taper off it if I go in whinging, and he could be the model that disbelieves there are withdrawals off Gabapentin, and make me do it too quick. I wouldn't be able to eat for sure. It would mess me up, and because 900mg isn't working I'm dubious about putting it up. I've never took more than 300mg at a time.

 

I know, I like to fix things too! I did listen to 3 mindfulness videos. I was a bit wired at the time. I need to try again. I will definitely keep it in mind.

I darent leave the longest break in between doses during the day because I need the bit of relief I get maybe 10-2pm ish to get things done due to my leg pain. I'm back on the 900mg from 300mg but my body is like its crying out for more or something. Now when I'm still I'm realising I'm vaguely burning constantly. I know......I need to stop focusing on the symptoms. Am trying to.

 

Hi Locutus. I've read a lot of you're journey, everyone's journey. I'm half way through reading the whole thread a second time!

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Hang in there, ayley. If your doctor will let you stay at 900, then I would just hold tight. Wish I could offer more help. I haven't tapered my gabapentin yet. But I suspect it is similar to tapering a benzo. Have you tried survivingantidepressants.org? They actually deal with tapering many different psych meds, not just antidepressants. Maybe you can find more info on gabapentin there or somebody who has gone through what you're going through. They have a benzo sub-forum where I have been there and gotten good advice about tapering and coping from people who have tapered off all kinds of med cocktails. It's a helpful place.

 

Gard

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Yes Gard I have joined there aswell. There aren't many on there who have battled Gabapentin but there's bits and bobs of information. The moderators are brilliant. They do an incredible job of helping people. Its mostly me going on about Gabapentin. Its made me wonder whether publishing the despairs of it is a good idea. Didn't wake up burning today thankfully.

[[Ca...]]

Yes Gard I have joined there aswell. There aren't many on there who have battled Gabapentin but there's bits and bobs of information. The moderators are brilliant. They do an incredible job of helping people. Its mostly me going on about Gabapentin. Its made me wonder whether publishing the despairs of it is a good idea. Didn't wake up burning today thankfully.

Personally, I think every ones story counts in its entirety... Well as much as you care to tell it...

We learn the truth from reality...

 

Ps, I left your previous post as Guard had it couvered...

 

I hope today is the start of better things...

 

 

[[Ca...]]

I think I can truthfully say that I have battled Gabapentin, and am slowly wrestling it into oblivion, but at significant cost and over several years. I am the rare member of this bb that took to Ativan and then Valium to withdraw from it. Now, after a year and a half on Valium, I still encounter Gabapentin withdrawal symptoms when I go down in my V dosage, and firmly believe that all my time on it caused brain damage that is still only very slowly healing. It can be as much a Beast (BG) as the Benzos.

[[ga...]]

I'm sorry things have been so hard for you, Cally. Thank you for sharing so others will know they are not alone in their struggles to get off of gabapentin.

 

Gard

[[ay...]]

Hi Gard, cantfly, and Callydex.

      Isn't it terrible that Cally had to take Ativan & Vallium to get off Gabapentin? So sorry you have to go through benzo withdrawal too now Cally. Yes, thanks for sharing from me too.

 

I ended up on Gabapentin getting off Vallium. I wonder how many people try to get off one med, and end up on another or 2, and in my case it was 2 as I ended up on G & Amiltriptyline, and they both were for the chronic leg pain that come on half way through the Vallium taper.

 

Day 10 of updosing still having burning, and again as I woke up.  My neighbour went off Gabapentin once and got the burning, and she said it took about 2 weeks for her original dose to kick back in so that's given me a bit of hope. Still darent see the Dr. Dread to think what he'd suggest. Gabapentin affects the stomach something chronic. I'm sure sometimes something I've eaten sets burning off in the stomach as well. So fed up with the burning in particular. Has anyone managed to quell the burning with an updose?

[[lo...]]

ayely: never had any physical symptoms tapering gabapentin. other then typical feeling sort of adrenaline rush.

there might be supplements helping with nerve issues, look into choline, acetyl-l-carnitine, l-glutamine, alpha-lipoic acid,  and potentially other substances. atkins diet could help too.

my taper is going well so far, 0 issues. dropped evening dose from 600 to 425 or so, no difference. I hope that this time, with proper taper, supplements and diet, I will ride out the rough bumps successfully.

good luck all

[[Ca...]]

Hi Gard, cantfly, and Callydex.

      Isn't it terrible that Cally had to take Ativan & Vallium to get off Gabapentin? So sorry you have to go through benzo withdrawal too now Cally. Yes, thanks for sharing from me too.

 

I ended up on Gabapentin getting off Vallium. I wonder how many people try to get off one med, and end up on another or 2, and in my case it was 2 as I ended up on G & Amiltriptyline, and they both were for the chronic leg pain that come on half way through the Vallium taper.

 

Day 10 of updosing still having burning, and again as I woke up.  My neighbour went off Gabapentin once and got the burning, and she said it took about 2 weeks for her original dose to kick back in so that's given me a bit of hope. Still darent see the Dr. Dread to think what he'd suggest. Gabapentin affects the stomach something chronic. I'm sure sometimes something I've eaten sets burning off in the stomach as well. So fed up with the burning in particular. Has anyone managed to quell the burning with an updose?

 

Yeah it is the reason I try to caution people about using Gaba to get off benzos. I have never updosed on Gabapentin - if anything I just kept roaring down in dosage cause my doctors all thought it would be totally symptom-free, and then couldn't understand why I kept having stroke-like symptoms, amnesia, bad rebound pain, nausea like anything I'd ever experienced....and that was all before I actually jumped at about 50 mg/day. I wish I had done an incredibly slow taper - I do believe that as I go down in Valium it is as much the Gaba symptoms I am 'uncovering' as it is anything related to the Valium. Right at the moment, in my stress-caused wave, I am experiencing right-sided coldness and parasthesia (a big one two years ago) and am just trying to ride it out...at work and getting more 'this organization really doesn't want your input anymore', and that is not helping the physical symptoms. I try each morning to name one thing I am grateful for (I could get up, go to work, anxiety is better, my children are healthy - recovered from all their recent ailments - there's a long list of things), one thing that is better (see above), and one thing I can let go of. This is a bit tougher: letting go of feeling that I am being rejected and marginalized, denied the ability to make a valued, genuine contribution as a professional in this particular institution - and just trying to do the best job I can, making contact with  intrinsic gratification - is the goal for the day. 

[[ay...]]

And then there's some people saying as they come off the Gabapentin, it is unveiling their past benzo withdrawals.

[[Ca...]]

And then there's some people saying as they come off the Gabapentin, it is unveiling their past benzo withdrawals.

wow. I totally believe it - pretty sure that now as I reduce Valium some of the stuff I go through is withdrawal from that - but which is which I have noooooo cluuuuue

[[lo...]]

its most likely a mix of both. gabapentin w/d has a profile of its own, which in most people does not seem a big issue when tapered. but in people which done a benzo taper, their brain has not fully recovered yet, so they are getting hit worse. it could also be that gabapentin prevents 100% benzo healing, and therefore withdrawal unmasks that. which I also believe that the key to 100% well-being is going fully drug-free.

 

And then there's some people saying as they come off the Gabapentin, it is unveiling their past benzo withdrawals.

wow. I totally believe it - pretty sure that now as I reduce Valium some of the stuff I go through is withdrawal from that - but which is which I have noooooo cluuuuue

[[Ca...]]

its most likely a mix of both. gabapentin w/d has a profile of its own, which in most people does not seem a big issue when tapered. but in people which done a benzo taper, their brain has not fully recovered yet, so they are getting hit worse. it could also be that gabapentin prevents 100% benzo healing, and therefore withdrawal unmasks that. which I also believe that the key to 100% well-being is going fully drug-free.

 

And then there's some people saying as they come off the Gabapentin, it is unveiling their past benzo withdrawals.

wow. I totally believe it - pretty sure that now as I reduce Valium some of the stuff I go through is withdrawal from that - but which is which I have noooooo cluuuuue

 

I am sure it is both. I never took a Benzo before I started on Gabapentin - and I do know that people have incredibly individual responses to it: I've run across some who have a bad time after short, minimal use, and others who've been on it for a long time who did not. The brain is  mysterious thing for sure

[[Ph...]]

B.B, That's rough having to take valium to get off gabapentin. Oh Crap, once again I have betrayed by the Drs that put me in this misery in the first place. I have been prescribed Gabapentin(High Dose) along with other meds to help in my recovery. The Pysch straight out of Detox prescribed this to me and now I have multiple withdrawals on my plate. I was injured in the middle of my healing and I used the Gabapentin to help with the pain from my accident which led to surgery.

 

I want to ween everything(Tapering the Gabapentin + Trazadone) but my present state of mind will never allow that, also I have read it needs to be tapered. I Pray to the heavens above that I will not have to go through multiple withdrawal miseries. 

[[Ca...]]

I think I can truthfully say that I have battled Gabapentin, and am slowly wrestling it into oblivion, but at significant cost and over several years. I am the rare member of this bb that took to Ativan and then Valium to withdraw from it. Now, after a year and a half on Valium, I still encounter Gabapentin withdrawal symptoms when I go down in my V dosage, and firmly believe that all my time on it caused brain damage that is still only very slowly healing. It can be as much a Beast (BG) as the Benzos.

Hey Cally..

Did you have much in the way of GI tract issues or damage??

I am sure I had the Australian Lyme, a controversial subject here..

Also the gabapentin history, antibiotics X a zillion, and opiates...

Whats what is a never ending mind game for me...

 

Ta for posting...

 

Edit.. -sorry, You guys Answered some of that already..

Valium and lyrica were both tapering aids for me... Big mistake, yet perhaps little option..??

 

[[Ca...]]

I think I can truthfully say that I have battled Gabapentin, and am slowly wrestling it into oblivion, but at significant cost and over several years. I am the rare member of this bb that took to Ativan and then Valium to withdraw from it. Now, after a year and a half on Valium, I still encounter Gabapentin withdrawal symptoms when I go down in my V dosage, and firmly believe that all my time on it caused brain damage that is still only very slowly healing. It can be as much a Beast (BG) as the Benzos.

Hey Cally..

Did you have much in the way of GI tract issues or damage??

I am sure I had the Australian Lyme, a controversial subject here..

Also the gabapentin history, antibiotics X a zillion, and opiates...

Whats what is a never ending mind game for me...

 

Ta for posting...

 

Edit.. -sorry, You guys Answered some of that already..

Valium and lyrica were both tapering aids for me... Big mistake, yet perhaps little option..??

 

Hi Cant - was just reading your other post and thinking that your current wave is similar to mine - too much stress, too much physical activity, and no cushion on meds cause we're low and don't want to updose...just waiting this one out.

Totally believe in global Lyme: the CDC here is just beginning to revise upwards their estimates of the number of cases in the US - have interacted with sufferers all over the world. The trick - believe it or not - is to ask farm workers and vets whether or not they think their animals have Lyme - in the US they were admitting it, diagnosing it, and dealing with it in areas of the country that the AMA said were Lyme free.

Yes I had horrible GI issues but not with Lyme, although I know many Lyme people who had terrible issues - really even a couple who died from uncontrollable diarrhea and loss of fluids. Mine was almost completely neurological - I mean my brain and nerves were completely shot. But the 4 years of antibiotics - and the Gabapentin and other anxiolytics - reduced by GI tract to a parking lot, and it has taken years to get that semi-functional again. And with any V cut I am horribly nauseous. Time for being an absolute turtle for a while....Hugs.

[[Ca...]]

I think I can truthfully say that I have battled Gabapentin, and am slowly wrestling it into oblivion, but at significant cost and over several years. I am the rare member of this bb that took to Ativan and then Valium to withdraw from it. Now, after a year and a half on Valium, I still encounter Gabapentin withdrawal symptoms when I go down in my V dosage, and firmly believe that all my time on it caused brain damage that is still only very slowly healing. It can be as much a Beast (BG) as the Benzos.

Hey Cally..

Did you have much in the way of GI tract issues or damage??

I am sure I had the Australian Lyme, a controversial subject here..

Also the gabapentin history, antibiotics X a zillion, and opiates...

Whats what is a never ending mind game for me...

 

Ta for posting...

 

Edit.. -sorry, You guys Answered some of that already..

Valium and lyrica were both tapering aids for me... Big mistake, yet perhaps little option..??

 

Hi Cant - was just reading your other post and thinking that your current wave is similar to mine - too much stress, too much physical activity, and no cushion on meds cause we're low and don't want to updose...just waiting this one out.

Totally believe in global Lyme: the CDC here is just beginning to revise upwards their estimates of the number of cases in the US - have interacted with sufferers all over the world. The trick - believe it or not - is to ask farm workers and vets whether or not they think their animals have Lyme - in the US they were admitting it, diagnosing it, and dealing with it in areas of the country that the AMA said were Lyme free.

Yes I had horrible GI issues but not with Lyme, although I know many Lyme people who had terrible issues - really even a couple who died from uncontrollable diarrhea and loss of fluids. Mine was almost completely neurological - I mean my brain and nerves were completely shot. But the 4 years of antibiotics - and the Gabapentin and other anxiolytics - reduced by GI tract to a parking lot, and it has taken years to get that semi-functional again. And with any V cut I am horribly nauseous. Time for being an absolute turtle for a while....Hugs.

thanks Cally,

Yes there are huge support groups here, and Drs that specialise in limes, but bloods still have to get sent to the USA for propper confimation...

I got mine off a tick in hospital, it came from clothes from home...

 

This can be brutal on the GI.. I lost all functional peristalsis, it went spastic.. To a 36 DAY transit time, by radiological? Markers I had to swollow...

-Yet still they increased the opiates..!!

(If u dont laugh u cry..!!)

 

Lol, was just saying earlier that I now have a daily SBM.. !!

-its ok, I have already been ummm congratulated..!!

 

Thanks for your valued thoughts...

 

 

[[ay...]]

I had a test for Lyme's. It came back negative, but in the UK apparently our tests aren't good enough, and fail to diagnose. So there are people who send a test to Germany. They get a positive result for lyme's even though our uk tests said negative.

 

 

[[ay...]]

I honestly don't know how I feel.  Its 12 days since updosing now. I'm trying to decipher each day whether there are improvements, The morning burning was milder today, and yesterday though thankfully. I. put heavier curtains up in the bedroom to make it darker as the others were letting light through, and wondering if that made a difference. Will have to see. Its a bit freaky having gone back up from 300 to 900 and waiting to stabilize. I didnt miss many doses in 4 years so I never felt any withdrawals from it ever. I vastly underestimated the power of this drug. I wonder if it could take maybe a couple of months to stabilize.

[[ga...]]

Sadly, yes, it could take a couple of months. Meanwhile, you might check out the Other Medications board, if you haven't. I seem to recall reading of someone else have this sort of problem with gabapentin. I can't remember where, but it might have been on that board.

 

Gard

[[Ca...]]

I know I have a huge problem with light, particularly in the mornings from first light, for several hours...

I also feel significantly better after dark...

It started pre benzo, when tapering opiates, but I think I was starting to only use GPN as needed by then...

So maybe I have underestimated GPN too..??

I find a light mask helps as it only takes a pin prick of light to stab me in the head, and twist my guts...

But when I am stable between cuts and waves (tapering V), This fades to the background...

-Remembering I am now tapering short term (repeat) lyrica use...

 

Vamp

[[ay...]]

Cheers Gard, I will go have a look right now.

[[lo...]]

hey all. just to mentioned that i started a ketogenic diet last week, adding some supplements (acetyl-l-carnitine, choline). according to urine test strip I am in mild-moderate ketosis.

in parallel I also started to microtaper, instead cut hold. around 5mg every day so far, but I am prepped to take breaks if things go rough.

all in all - I feel pretty good, very stable during the day, no swings. I attribute this 100% to the keto diet. there is couple of other threads around bb about keto, and I don't want to drag this away from gabapentin too much, but I can recommend this diet a lot. did it in the past as well, lost a lot of weight (good for me), and vitals were good, including blood panels.

[[Re...]]

Hey all.

 

How is life among we gabapentin subjects?  I have been away from BB for a few weeks just because I've had exhausting responsibilities at home and at work.  I have been concerned about everybody but I've been in survival mode for my job and my family.  Anyway......  I care about all of you and am interested in how everyone is doing.

 

LOCUTUS: I am interested in the Keto diet, too.  The thing is, I'm so skinny now, I can't afford to lose any more weight!

 

AYLEY: I updosed last fall from, if you can believe it, 100mg taken as 50mg AM and 50mg PM.  I updosed to 60mg taken 3 times per day for a total of 180mg.  It took me about a month to feel a bit stabilized.  I resumed cutting right after feeling stabilized and I think this was a mistake.  I should have let my body recover more.  For some reason, cutting and suffering doesn't do well for me.  If I have a period of difficult withdrawal, my ability to cut thereafter is reduced.  It's very odd.  When I got down to 100mg, I had cut 2 mg per day without much difficulty until I got some exercise that messed me up badly.  When I returned to tapering thereafter, I could hardly taper 1mg every other day.  Now, I'm down to 1mg per week, at best.  I'm currently sitting at 48mg TID for a total of 144mg per day.  This is INCREDIBLY frustrating for me.  I do think I am NOT TYPICAL.  So, I wouldn't stress about your experience mirroring mine.  I also recently discovered I have been working in an office with long-term exposure to toxigenic mold which can have serious neurological repercussions.  I am wondering if this has compounded my difficulties.

 

CANTFLY:  I am a little light sensitive, too.  But nothing like you've described.  I do find I am forced to wear sunglasses more often than I usually do and my pupils are like little pin-holes in bright light.  I look so strange.

 

Lots of fun.....SARCASM!!!!!!

 

-RST