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Gabapentin (Neurontin) Withdrawl Support Group


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Hi RST, I have seen a lot of your progress through this thread, and earlier when I went and trawled the other meds boards I saw you popping up, and you were saying one of your worst problems is the burning pain. Thats like me. Its awfull.  Well done for getting so far. Your doing amazing especially working through it. I can't even imagine what it must be like below 300mg.

 

I know I tapered too quick but even slowly I believe I would get a lot of burning sensations. I feel my CNS is damaged from the benzo taper. I'm only just realising this. I'm starting to believe what I've heard round here that the Gabapentin could be just masking the benzo withdrawal.

 

Thinking about it, I was given it right at the end of my taper for severe leg hip, buttock, heel nerve pain, and when I jumped off (tapered 10mg lasting 3yr 7mts and it was a terribly hard taper), I just got on with life pleasantly, easily. The past 34ish months since have been pretty normal, Gabapentin covered the leg pain, happy, able to function, low anxiety, etc , nothing like what I'm hearing in the 30months plus thread here on BB. After reading their stories I'm shocked. Why didn't I realize?

 

I'm glad you say it took a month to stabilize. Maybe there's hope. I was told on SA that it takes 4 days to get back into the system, and a bit longer for the brain to register it. On day 5 when I wasn't immediately better I was mortified. I still am, popping 900mg a day, and its not working for my leg.

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Hi Ayley.  Hey Cally!!! 

 

Yes, the burning is atrocious.  My worst symptom, although many others are horrible, too.  Chest, arms, lower legs and bottoms of feet.  The heels - oh, yes. 

 

Cally, I think I'm going to try ketogenic but im afraid of more weight loss.  I've gone from being beach-proud to rail-thin.  >:(  :tickedoff:

 

One day at a time....

 

-RST

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Realslim: give a try and trust your body to do the right thing? not sure if keto means weight loss at all levels, if that would be the case keto followers would die at some point.

my mental symptoms improved by 75% since I started keto. still downs, but they are more manageable.

it appears that most of you suffer physical symptoms from gabapentin w/d. sometimes I feel I would swap mental for physical, since I don't have any pain.

anyways...on track with liquid micro taper at a rate of 5mg per day (1ml). so far no negative effects, quiet the opposite.....

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Hi Ayley.  Hey Cally!!! 

 

Yes, the burning is atrocious.  My worst symptom, although many others are horrible, too.  Chest, arms, lower legs and bottoms of feet.  The heels - oh, yes. 

 

Cally, I think I'm going to try ketogenic but im afraid of more weight loss.  I've gone from being beach-proud to rail-thin.  >:(  :tickedoff:

 

One day at a time....

 

-RST

Nice thing about Keto is all the fats you can eat. I did not lose more weight on it, and I find it easier to build muscle and you may too. Try it - I am in a pretty bad wave at the moment - and it feels like the earlier days of jumping from Gaba but not nearly as bad - and if I eat well and keep moving I do feel better (though I use the term better very loosely)

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Interesting feedback everybody.  Thanks.  Locutus, I'm very glad to hear your taper is going smoothly.

 

I am now 5 days from a 1mg cut and feeling poorly, but not the worst I've felt.  Some mild anxiety and medium burning in all the usual spots.  I reduced my afternoon dose to 48 from 49.  That's 2% of 1 dose or 0.7% of my daily dose.  How crazy is that to have such a micro taper cause so much pain!!!!!

 

So slow at this point....crazy!!!!

 

-RST

 

 

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HHI All , I thought I'd chine in on tghs board.... I've been on Gbabpentin for many years at varying doses , for restless legs. I stopped and started a few times with no withdrawals.

 

Since the steroid CT and having to updose the Gaba, and then the benzos , I do now get Gabapentin wds  whe I reduce.

 

I have managed to cut back 600 mgs in the last two years . I'm taking it very slowly , and just take a little off when I feel ale . I'm mostly focused on my Benzo taper .

I have noticed that I used to feel pretty ok on GPN, now when I take ( I divide my dose in two ), it can give me a kind of shock. very strange . I always take it with food to try and ease teh absorption.

 

I have to say , for me , GPN wd has been nothing like the hell of benzos.

[ I have bad burning skin and deeper burning pain, that I thought was due to benzos , but maybe its the GPN? No way to know really , as people taperiing Klonopin get this too......

 

Hope everyone finds their way ..... with as much ease as possible .

Hang in there ,

MiYu

 

 

 

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Hi MiYu,  I didn't have this kind of burning with Diazepam withdrawal. I had some here and there but not as aggressive, and not so confined to the trunk, arms, shoulders and stomach. Ive found this Gabapentin burning to be more intense, and less predictable. It comes on even when totally relaxed, and peacefull. Its such a strange feeling, hard to describe.

 

Today is day 15 of updose from 300mg to 900mg..... Don't think it was worth going all the way back to 900mg. Probably would have felt the same at around 600mg. Don't feel normal yet, and still getting some burning but not as often, and maybe it is less intense. Waking up (7-8am) feeling wired with a clammy forhead, even though I take the evening dose at 11pm

 

Does anyone else think Gabapentin affects the skin? It makes my face super greasy, and my scalp. Wondering whether this is why some report hair loss. My hair has thinned loads.

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My last post was a bit positive. It might be harder to stabilize for someone who was given Gabapentin for pain. If I wasn't gaging my pain that has returned, I maybe would think that I was more stable,....if that makes sense??...According to my pain I'm nowhere near yet (day 16 not 15). So worried this isn't going to work. If I don't stabilize then I have to taper off on top of this it would be unthinkable even. (The pain when at its strongest is more akin to pre Gabapentin days).
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Hello!  Thought I'd peak in here.

 

A dr., who supposedly knows benzos (addiction guy) and whose name comes up if you google it, thinks I should stay on my valium dose (abt 4 mg), ambien 10 (not that they work much) and add gabapentin so I can get stable, reliable sleep.

 

Thing is in entire life getting sleep has been major issue.  Hereditary circadian rhythm disorder and insomnia (NOT from withdrawal).  So how bad is gabapentin?

 

Have tried lyrica, like a third of a 75 mg capsule, or a half...  think kinda helped but if did not take then depressed.

 

Any advice?

 

IF I could sleep I could taper off valium as it does not help anything.  The ambien was more reliably doing something.

Alas, 35 years or more on benzos.  I realize may never get off.  Wonder if updosing a bit is better than adding a new med?  This dr. thought not better.

 

??

 

Thank you.

 

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Hello!  Thought I'd peak in here.

 

A dr., who supposedly knows benzos (addiction guy) and whose name comes up if you google it, thinks I should stay on my valium dose (abt 4 mg), ambien 10 (not that they work much) and add gabapentin so I can get stable, reliable sleep.

 

Thing is in entire life getting sleep has been major issue.  Hereditary circadian rhythm disorder and insomnia (NOT from withdrawal).  So how bad is gabapentin?

 

Have tried lyrica, like a third of a 75 mg capsule, or a half...  think kinda helped but if did not take then depressed.

 

Any advice?

 

IF I could sleep I could taper off valium as it does not help anything.  The ambien was more reliably doing something.

Alas, 35 years or more on benzos.  I realize may never get off.  Wonder if updosing a bit is better than adding a new med?  This dr. thought not better.

 

??

 

Thank you.

Hi Barb..

Big choices to have to make... I dont envy you...

 

All I can give is my thoughts...

 

It seems all these specialists are into the gabapentinoids? Atm.... I have seen a few... Funny that the top child specialists have a complete different view of it...

A top (for here)? Benzo specialist I was seeing for something else told me that my body would not notice 1v at all.. They just do not accept our level of sensitivity and long term receptor damage... They treat the symptoms of coming off the med only... Then re-medicate for anything left over.. Im generalising, I would guess there are exceptions...

 

How well they work for different people is a question too... They are serious medications... For me neither made me sleep, asides high one off GPN doses making me a zombie.. (Taken for sciatica trauma)..

Lyrica, I used more as a V taper aid instead of constant updoses at a challenging time in life.. 3 months and I was up to 300mg day.. I have been tapering it firmly... But this gave me an energy high like speed..?? -starting at 25mg -NO to sleep..!!

 

I had no trouble with gabapentin, and I stopped started many times pre benzos with no problems...

If I had to choose, For ME, GPN would be the one...

For ME, lyrica is like playing with fire, particularly when combined with benzos and perhaps opiates too..

 

In a taper I would say updoses are probably better than adding these, but thats not exactly your question..?? I think your priority here is sleep..?? And I dont know of a medical solution that I would accept, apart from perhaps marijuana products..??

 

If you do decide to go this path, perhaps a trial...  I did write somewhere about a weeks lyrica trial I did at the start of my taper... Simply put, I got strong WD after only a week on med...

 

Others will add their different thoughts too, I hope...

 

 

 

 

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you need to stay away from gaba type drugs. I would even prefer adding low dose seroquel (<50mg) then messing with lyrica etc.

especially since you take already valium and ambien. what I would prob try if I would be you, is updose valium a bit, replace ambien/lyrica with something like low dose seroquel maybe doxepin/remeron if you can handle it, and once stable, taper valium slowly.

 

Hello!  Thought I'd peak in here.

 

A dr., who supposedly knows benzos (addiction guy) and whose name comes up if you google it, thinks I should stay on my valium dose (abt 4 mg), ambien 10 (not that they work much) and add gabapentin so I can get stable, reliable sleep.

 

Thing is in entire life getting sleep has been major issue.  Hereditary circadian rhythm disorder and insomnia (NOT from withdrawal).  So how bad is gabapentin?

 

Have tried lyrica, like a third of a 75 mg capsule, or a half...  think kinda helped but if did not take then depressed.

 

Any advice?

 

IF I could sleep I could taper off valium as it does not help anything.  The ambien was more reliably doing something.

Alas, 35 years or more on benzos.  I realize may never get off.  Wonder if updosing a bit is better than adding a new med?  This dr. thought not better.

 

??

 

Thank you.

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Hi. I've had a sleep problem all my life, too. It became severe a few years ago and I was put on a benzo. I habituated to it very rapidly.

 

I take a very small dose of gabapentin for nerve pain around the clock. I hope to reduce it or get off of it after I taper my benzo. My experience with gabapentin is you habituate to its sedating effects. You habituate to all of its effects, actually. I don't think it's doing anything for my nerve pain and I refuse to up my dose because it has bad side effects, such as memory loss and cog fog. Don't need any more of that!

 

To taper and give me sleep, my doctor put me on 25mg of Seroquel while I get off the other drugs. Seroquel does a lot of things. One thing is it is an very strong antihistamine. It has an affinity for the histamine receptor. That means the first thing it does is go to histamine receptors and sedate you. As the dose gets higher, it hits other receptors, too, and has other effects, including being antipsychotic. It effects dopamine, too, which is a concern. It has some very serious and dangerous and potentially permanent side effects. Supposedly these don't happen at low dose short term use. Supposedly. Seroquel does not knock me out the way it does some people, just nudges me into sleep. It still makes me groggy in the morning. That said, it's better than not sleeping.

 

Some people can take half a 25mg tablet and that's enough. I take 25mg. I would not take more than 50mg. You won't get much more histamine effect above 50mg and you will get more other nasty effects as you go higher. Lots of people don't understand this. I've seen people on 300mg for sleep. It's giving them other effects than sleep at that dose. Their doctors don't seem to understand Seroquel or else they are trying to give them more than sleep.

 

Many of the older antidepressants are also antihistamines which is why people use them for sleep. Doxepin, amitriptyline, etc. IMHO, they are less dangerous choices than Seroquel. I cannot take them because of my genetics, so I'm stuck with Seroquel.

 

Hope that was helpful. I'm still a bit Seroquel foggy. So foggy I almost just signed my real name! ::)

 

Gard :)

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there is a seroquel w/d thread. i had 0 problem quitting seroquel once my sleep stabilized. pretty much a rapid taper. still have some pills at home just in case.

there was a sweet spot, around 15mg, where i slept but did not had crazy grogginess next day. can it cause serious s/x like TD at those doses? hard to say, probably not, have not seen any cases.

the lowest case I've seen online, was somebody taking 200mg.

 

Hi. I've had a sleep problem all my life, too. It became severe a few years ago and I was put on a benzo. I habituated to it very rapidly.

 

I take a very small dose of gabapentin for nerve pain around the clock. I hope to reduce it or get off of it after I taper my benzo. My experience with gabapentin is you habituate to its sedating effects. You habituate to all of its effects, actually. I don't think it's doing anything for my nerve pain and I refuse to up my dose because it has bad side effects, such as memory loss and cog fog. Don't need any more of that!

 

To taper and give me sleep, my doctor put me on 25mg of Seroquel while I get off the other drugs. Seroquel does a lot of things. One thing is it is an very strong antihistamine. It has an affinity for the histamine receptor. That means the first thing it does is go to histamine receptors and sedate you. As the dose gets higher, it hits other receptors, too, and has other effects, including being antipsychotic. It effects dopamine, too, which is a concern. It has some very serious and dangerous and potentially permanent side effects. Supposedly these don't happen at low dose short term use. Supposedly. Seroquel does not knock me out the way it does some people, just nudges me into sleep. It still makes me groggy in the morning. That said, it's better than not sleeping.

 

Some people can take half a 25mg tablet and that's enough. I take 25mg. I would not take more than 50mg. You won't get much more histamine effect above 50mg and you will get more other nasty effects as you go higher. Lots of people don't understand this. I've seen people on 300mg for sleep. It's giving them other effects than sleep at that dose. Their doctors don't seem to understand Seroquel or else they are trying to give them more than sleep.

 

Many of the older antidepressants are also antihistamines which is why people use them for sleep. Doxepin, amitriptyline, etc. IMHO, they are less dangerous choices than Seroquel. I cannot take them because of my genetics, so I'm stuck with Seroquel.

 

Hope that was helpful. I'm still a bit Seroquel foggy. So foggy I almost just signed my real name! ::)

 

Gard :)

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there is a seroquel w/d thread. i had 0 problem quitting seroquel once my sleep stabilized. pretty much a rapid taper. still have some pills at home just in case.

there was a sweet spot, around 15mg, where i slept but did not had crazy grogginess next day. can it cause serious s/x like TD at those doses? hard to say, probably not, have not seen any cases.

the lowest case I've seen online, was somebody taking 200mg.

 

I've only seen "long term use" even at "low doses" can cause serious side effects, but no indication of what the low dose was. My pharmacist was concerned abut my long-term use of low-dose Q and said it was more dangerous than the benzo, but don't know if she was particularly knowledgeable or not.

 

I hope to be able to taper my Seroquel down to a lower dose after I'm done with the other meds. The Seroquel is at least helping me sleep. The other meds are doing nothing but cause trouble. >:(

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the lowest (not off-label) dose appears to be around 200mg+, so by low dose, prescribed it most likely means 200+, at which point there is evidence that it can cause TD

but probably best to get off it ASAP, once you sleep somehwat ok

 

there is a seroquel w/d thread. i had 0 problem quitting seroquel once my sleep stabilized. pretty much a rapid taper. still have some pills at home just in case.

there was a sweet spot, around 15mg, where i slept but did not had crazy grogginess next day. can it cause serious s/x like TD at those doses? hard to say, probably not, have not seen any cases.

the lowest case I've seen online, was somebody taking 200mg.

 

I've only seen "long term use" even at "low doses" can cause serious side effects, but no indication of what the low dose was. My pharmacist was concerned abut my long-term use of low-dose Q and said it was more dangerous than the benzo, but don't know if she was particularly knowledgeable or not.

 

I hope to be able to taper my Seroquel down to a lower dose after I'm done with the other meds. The Seroquel is at least helping me sleep. The other meds are doing nothing but cause trouble. >:(

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Well, that's good news, but I will get off when I can. A year left at least on the Librium taper. Then the gabapentin. Then the Seroquel, if I'm able.

 

Gard

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Hi. I've had a sleep problem all my life, too. It became severe a few years ago and I was put on a benzo. I habituated to it very rapidly.

 

I take a very small dose of gabapentin for nerve pain around the clock. I hope to reduce it or get off of it after I taper my benzo. My experience with gabapentin is you habituate to its sedating effects. You habituate to all of its effects, actually. I don't think it's doing anything for my nerve pain and I refuse to up my dose because it has bad side effects, such as memory loss and cog fog. Don't need any more of that!

 

To taper and give me sleep, my doctor put me on 25mg of Seroquel while I get off the other drugs. Seroquel does a lot of things. One thing is it is an very strong antihistamine. It has an affinity for the histamine receptor. That means the first thing it does is go to histamine receptors and sedate you. As the dose gets higher, it hits other receptors, too, and has other effects, including being antipsychotic. It effects dopamine, too, which is a concern. It has some very serious and dangerous and potentially permanent side effects. Supposedly these don't happen at low dose short term use. Supposedly. Seroquel does not knock me out the way it does some people, just nudges me into sleep. It still makes me groggy in the morning. That said, it's better than not sleeping.

 

Some people can take half a 25mg tablet and that's enough. I take 25mg. I would not take more than 50mg. You won't get much more histamine effect above 50mg and you will get more other nasty effects as you go higher. Lots of people don't understand this. I've seen people on 300mg for sleep. It's giving them other effects than sleep at that dose. Their doctors don't seem to understand Seroquel or else they are trying to give them more than sleep.

 

Many of the older antidepressants are also antihistamines which is why people use them for sleep. Doxepin, amitriptyline, etc. IMHO, they are less dangerous choices than Seroquel. I cannot take them because of my genetics, so I'm stuck with Seroquel.

 

Hope that was helpful. I'm still a bit Seroquel foggy. So foggy I almost just signed my real name! ::)

 

Gard :)

 

Seroquel is the antipsychotic, right?  I tried it years ago and felt awful on it.  I took like 1/4 or 1/2 of the lowest dose (sample) and felt my brain could not think at all. Don't think this is an option for me.

 

I will try to reply to other posts but have BB issues now I guess. After each reply I am out of the thread with no indication of where I was reading and replying. ????

 

OK, will say gabapentine DOES sedate me.  Or Lyrica.  Kind of knocks me on my head somewhat, actually, but I get over it.  I am talking like 25 or 50 mg lyrica or say 125 mg gabapentin would do that to me now, someone not taking regularly.  How does that compare with your dosages?  I hope I can reply more but have a feeling BB is gonna do the weird posting stuff to me.

 

I will continue to read for sure, tho..

 

Thanks.

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OK, my last time replying before getting bumped out of the thread... again.

 

Doxypine did try and no go. Did not put me to sleep.

 

My goal is to sleep, get stable, then taper off remaining stuff.  Well, or if I will never sleep again guess I have to updose and hope it works (the benzos)?  THEN what?

 

Now I forget what was writtenI was replying to and no way to look back.

 

Oh... not sure what this meant  >>body would not notice 1v at all.. They just do not accept our level of sensitivity and long term receptor damage... They treat the symptoms of coming off the med only... Then re-medicate for anything left over.. Im generalising, I would guess there are exceptions...

 

How well they work for different people is a question too... They are serious medications... For me neither made me sleep, asides high one off GPN doses making me a zombie.. (Taken for sciatica trauma)..<<

 

What is 1v?  Is that an IV?  Or is that 1 mg of Valium?

 

This dr said he tapers by 1 mg/month of Valium.  Fast, isn't that?  He said gabapentin better than benzos.  He did acknowledge some of us seem to be very very sensitive to medications.

 

So guess in *his* experience this what he recommends... add gabapentin, sleep and be stable, then get off valium... then ambien.    BUT, yeah, these drs. are not researchers and probably nobody knows how these drugs work.  Interesting that kids drs are saying gabapentin is bad?  Someone said stops your brain from making new synapses?

 

It is all too much to figure out!

 

Agree if could find cannabis that worked would feel safer than Big Pharma drugs.  But have not investigated other than a little CBD oil which did not help-- possibly revved me up--  at about 3 to 5 drops.  Can you tell I have no clue on cannabis?  hehe.

 

Thx.

 

 

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Well its 21 days since up dosing from 300mg back to 900mg, and my original pain symptoms are still here (which for me means I am unable to sit). I thought I was cured to try to taper off it. Still hoping that stabilization can occur. Still worried there's a possibility the Gabapentin might never work again as it did. Still getting flashes of burning. Has anyone up dosed and its taken quite a while?

 

Wishing everyone well!

Ayley

 

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for mental symptoms, anxiety, updosing relieved it within 24-48h in my previous failed tapers.

did you researched natural alternatives for your pain like diet changes, herbs, supplements, etc?

 

Well its 21 days since up dosing from 300mg back to 900mg, and my original pain symptoms are still here (which for me means I am unable to sit). I thought I was cured to try to taper off it. Still hoping that stabilization can occur. Still worried there's a possibility the Gabapentin might never work again as it did. Still getting flashes of burning. Has anyone up dosed and its taken quite a while?

 

Wishing everyone well!

Ayley

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Hi Locotus,

My anxiety has gone way down. That's actually improved extremely since up dosing . The problem is they're not working on the pain as well. I thought I was cured because I was so pain free. It is quite a warning for anyone who thinks theyre cured that lowering the Gabapentin could bring back chronic pain. Its quite a shock, and to back peddle, then still be in pain is quite frightening really.

 

Strangely enough I was just on YouTube looking at juicing organic veg to heal the nerves. At this stage I will be trying everything.

 

Even if I'd tapered slower I would still have got my pain back. Its something I will have to learn to live with again like before Gabapentin (& Amiltriptyline) But going from 300 back to 900, and its not working as well is getting to me.

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From my experience the best way off gabapentin is by using the more stable sister drug Lyrica.

WAY less ups and downs and no more of those random days of extreme headaches and nauseous hell :sick: :sick: :sick: :sick:

 

One of the big problem's with gabapentin is that it is only 27% bio available.  That would be OK if you always got 27% BUT the dose you get in your blood stream can fluctuate by 40% from day to day.  That's OK when your starting out but when in tolerance 40% can be a BIG cut!

Eating and what you eat and when you eat effect the absorption of gabapentin in a big way.

If you take it with an anti-acid it can neutralize 80% of the gabapentin dose.

 

I switched to Lyrica since it is 93% Bio-available and is not effected by foods or other substances.  I have tapered gabapentin twice now but I always switch to Lyrica when I want to taper gabapentin now. 

My doc used a 3 to 1 ratio when he crossed me over.  300mg gabapentin is replaced by 100MG Lyrica.  Even I think that's a bit strong at times but better too much on a Gabapentin to Lyrica crossover so my doc says. 

As far as the dosing I still dose the Lyrica just like the gabapentin at 3 times a day, every 8 hours.

 

 

 

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Hi Locotus,

My anxiety has gone way down. That's actually improved extremely since up dosing . The problem is they're not working on the pain as well. I thought I was cured because I was so pain free. It is quite a warning for anyone who thinks theyre cured that lowering the Gabapentin could bring back chronic pain. Its quite a shock, and to back peddle, then still be in pain is quite frightening really.

 

Strangely enough I was just on YouTube looking at juicing organic veg to heal the nerves. At this stage I will be trying everything.

 

Even if I'd tapered slower I would still have got my pain back. Its something I will have to learn to live with again like before Gabapentin (& Amiltriptyline) But going from 300 back to 900, and its not working as well is getting to me.

Im so sorry to hear that 900 didnt help the pain... From my experience (for me) I realy thought It would be working by now...

For me, they started talking about nerve blocks, but pelvic reconstruction solved most pain issues...

I Hope you find a way soon...

Hang in there...

:)

 

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I would advise anybody here against switching gabapentin for lyrica. this is pure insanity.  there is enough evidence out there that lyrica w/d is way worse than gabapentin.

 

 

From my experience the best way off gabapentin is by using the more stable sister drug Lyrica.

WAY less ups and downs and no more of those random days of extreme headaches and nauseous hell :sick: :sick: :sick: :sick:

 

One of the big problem's with gabapentin is that it is only 27% bio available.  That would be OK if you always got 27% BUT the dose you get in your blood stream can fluctuate by 40% from day to day.  That's OK when your starting out but when in tolerance 40% can be a BIG cut!

Eating and what you eat and when you eat effect the absorption of gabapentin in a big way.

If you take it with an anti-acid it can neutralize 80% of the gabapentin dose.

 

I switched to Lyrica since it is 93% Bio-available and is not effected by foods or other substances.  I have tapered gabapentin twice now but I always switch to Lyrica when I want to taper gabapentin now. 

My doc used a 3 to 1 ratio when he crossed me over.  300mg gabapentin is replaced by 100MG Lyrica.  Even I think that's a bit strong at times but better too much on a Gabapentin to Lyrica crossover so my doc says. 

As far as the dosing I still dose the Lyrica just like the gabapentin at 3 times a day, every 8 hours.

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