Nightingale Neurontin 3200 mg tapered down to 300 and suffering

[Nightingale]

Hello!

 

I'm writing four months in on my Neurontin taper. I've reached 300 mg (by some miracle I know not!) and though it has been a thoroughly miserable process, I'm hellbent on clearing my body of this poison.

 

I was prescribed Gabapentin and Wellbutrin together by a decidedly careless Medicaid psychiatrist who insisted Gabapentin would assist with Wellbutrin-related anxiety. I had only reached out for psychiatric care specifically for Wellbutrin alone after a recent, several month slump of major depression/PTSD-related issues, but relented upon her insistence. She prescribed me 1-2 800 mg tablets daily of Gabapentin "as needed" saying that it was a perfectly safe medication with zero withdrawal and negligible side effects. I initially refused to take the medication, feeling skeptical, but relented and would occasionally take the (what I NOW know to be) huge doses situationally. This lasted only a few weeks; at first I experienced an incredible, near-narcotic feeling of ecstasy and relief when I took the pills. My suspicion was cemented, however, when the next few days i'd experience terrible anxiety, severe chest constriction, agitation, difficulty breathing, fogginess- I couldn't remember people's faces, names, basic words, etc. Concerned, but repeatedly being told this was just discontinuation, I continued to take the medication.

 

By early winter, I was at 1600-3200 mgs daily, similarly prescribed "as needed". I was so scared of the apparent feelings of withdrawal (Neurontin, as I've come to find out, has a remarkably short half-life of 5-7 hours) that I finally caved and stuck to a personal regiment of pills daily at a strict time schedule, despite my psychiatrists' thinking this was unnecessary. Fast forward to Valentine's Day of this year- in the early morning hours, after a missed dose of 800mg the day before, I suffered a Grand Mal seizure. Had it not been for my partner, fearful and sleepless next to me after many months of my irrational rages and mood swings, I don't know what would have happened. I was unconscious and vomiting, my jaws clamped tight in the throes of the seizure. He held my mouth open to scrape the vomit out of my throat until the EMTs arrived. The doctors were hapless, and discharged me after only a few hours. I realized i'd have to advocate for myself and get the care I needed on my own, and set out to find a competent psychiatrist who could help wean me off Gabapentin. I still don't know for certain what caused the seizure, but I have zero history of seizures and a near-perfect profile of physical health prior to this nightmare.

 

Many months later, i've had limited success. I began tapering 200mg week, every Friday, going through hell on the weekends in to the beginning of the week, experiencing a brief bout of relative calm in the weekdays before starting the hellish process again. This, while difficult, was manageable enough for these past four months despite the myriad symptoms- agitation, panic attacks, shortness of breath, suicidal ideation and severe depression, apathy, crying spells, rage, migraines, extreme fatigue and flu-like symptoms, hot flashes, back and muscle pain, etc. I take a multivitamin of calcium, magnesium, and zinc having read that Gabapentin gradually depletes your calcium and magnesium stores, ironically worsening anxiety in many. Whether or not this is true, it does seem to help me sleep marginally better at night.

 

My new GP (some weeks ago, at our first meeting) insisted that, passed 600 mg, I should be able to stop the medication cold turkey. Knowing where i'd gone before, I declined to take their advice and have continued to taper. I dropped from 600 to 450 one week, and then 450 to 300 the next, where I remain. I recognize that these are fairly large drops, but after so many months i'm both terrified and desperate enough to be off this medication. That said, these last few tapers have been the most difficult, flaring up symptoms fiercely. I can't shake the elephant-on-my-chest feeling, i'm angry nearly all the time (perhaps the most alien experience of it all, honestly), and my social and professional life have suffered immensely. My partner is at their wit's end, confused and exhausted. I'm especially glad I hadn't simply stopped at 600 mg. I feel traumatized by the seizure event and relentlessly worry about suffering another. 

 

I maintain a strict diet, work out 5x a week, and have managed to maintain a fragile sobriety through this entire process, but i'm exhausted and at a loss. I've read, on this site, about Neurontin and a 10% taper - am I to understand this would be another number of months tapering down from a (relatively) small dose of 300 mg? The thought alone is heartily discouraging. I don't know what to do!

 

Thank you for reading this far, and eagerly awaiting-

Maxi

 

[cymbaltawithdrawal5600]

Wow!!

 

You are my new hero, I cannot imagining someone willingly suffering this way (the brutal taper rate).

 

Is there any reason not to slow down and hold your taper for a bit and give your body a chance to settle? I often think people, when they rush off their drugs, think that as soon as they take their last dose they will start feeling better when the truth is, they will likely take longer to recover normal functioning than if they tapered more slowly, giving their body more rests between drops.

 

So I take it you are aiming to go from 3200 mg gaba to zero in a year or less? How does the wellbutrin factor in all this?

[Nightingale]

Oh thank you for your response!

 

That's both kind and illuminating. I'm definitely leaning towards slowing the taper, at least pausing until I can get compounded or liquid doses. At the moment I'm splitting a 600 mg tablet in to quarters, needless to say- not the most stringently accurate dosing.

 

I worry, as you say, that once I'm "finished" and taper to 0 mg I'll just develop worsened withdrawal or PAWS. Considering the slew of Doc's across a variety of specialities that have vehemently denied Neurontin withdrawal even existing, and my GP's functional disbelief, I'm searching here to find a realistic, less painful (!!!) tapering schedule- ideally within this year, yes! I hadn't considered anything else honestly. Am I right to think that something approximating this, with a weekly 10% reduction, might be appropriate?

 

300, 7-10 days later, 270, 7-10 days later, ~243, ~219, ~198, etc? I'm thinking its time to invest in a digital scale

 

With that, I'm also trying to figure out what supplements would be helpful, which would be harmful. I'm chugging forward with the aforementioned magnesium/calcium/zinc supplement but I also read Biotin can be vastly depleted in a course of benzos/anticonvulsants/etc. Hard to find sound, reliable information.

 

Re Wellbutrin- it SEEMED to help initially as I had let the depressive episode worsen for too long and I wasn't leaving my bed. Wellby seemed, if nothing else, to make me feel wired enough to zoom through my day and accomplish basic tasks. I was struggling to eat and losing weight (already a problem for me before meds) so the switch to 150 helped. Still feel edgy and short with people, but less so. The endgame is certainly to get off it; I feel a pretty intense guilt about my inability to be sweet (at the very least, patient!) the way I used to! For now, though, I'm going to stay on until I've wrapped up the Gaba. My ONLY consideration in trying to taper alongside is the suspicion that Wellbutrin (NDRI) is just exacerbating the tired-but-wired feeling from GABA withdrawal by shooting up my norepinephrine. I'm no Neurologist, though, and this is all speculation.

[SquirrellyGirl]

I agree with CW5600 - what a horrifying journey you've been on!

 

Yes, the 10% taper is a lot slower than most people want to do, and most of us who are tapering went through the anger at the thought of not be able to Just Get Off the Danged Poison Now!  But no matter how badly we want something doesn't mean that it can therefore be so.  The nervous system dictates the rules.  Yours has been through the ringer already with the steep cutting you have done.  

 

All that you described are withdrawal symptoms, including the emotional, anger/irritablity, etc.:  Neuro Emotions

 

Introduction to AD Withdrawal Syndrome

 

This research paper was done with SSRIs and one SNRI (Effexor), but I believe that the trend is the similar with all psych meds:

 

Why taper?

 

If you look at the graphs on page 4, note the curve; very steep until you get to around 80% receptor occupancy, which just so happens to correlate to the Minimum Effective Dosage of those meds.  You can see that by no means does the MED mean that lesser dosages have no effect!  The take home message for this paper with regards to tapering is that SMALL cuts in meds lead to LARGE drops in occupancy once you drop below the MED.  This means withdrawal symptoms!  You have been experiencing severe withdrawal symptoms at the higher doses so as with most drugs, it gets more difficult as you get lower, so slowing things down is ever more critical.

 

Here's tips for tapering gabapentin:

 

 

http://survivingantidepressants.org/index.php?/topic/2309-tips-for-tapering-off-neurontin-gabapentin/

 

I think one reason people get distressed about tapering so slowly is because they imagine they will be feeling as horrible as they have been for the whole journey.  This is not the case.  What would be advisable is for you to hold your dosage and wait for stability.  This could take months since you have been symptomatic the whole time you've been tapering, by the sounds of it, and that means you've been exceeding your nervous system's ability to keep up at all; it has been scrambling just to continue functioning.  It will need time to get caught up.  Rushing the process only leads to protracted withdrawal after you come off, which can last for months or even years.  It is better to get most of that healing done while comfortably and slowly tapering off.

 

It might help to read Rhi's take on what's going on in the brain:

 

Brain Remodelling (Rhi's Description of Brain Healing)

 

This video is wonderful for showing what is going on in withdrawal.  With all that goes on, we need to give our systems the best leg up for recovering, and doing the slow taper is the best harm reduction approach.  Why taper by 10% of my dosage?

 

Thank you for filling out your signature, BTW - would you mind going back and adding the date of reinstatement since your history will appear at the bottom of each of your posts and we will quickly lose track of when the present was :-)  

 

Have a read of those links and get back to us here with questions.  I'm sure other mods will throw more reading material at you, but it helps to be armed with all the info so that you can make informed decisions.

 

SG

[cymbaltawithdrawal5600]

Let me just jump in here with this: that seizure was a warning shot across the bow of your about-to-sink ship.

 

You should plan to hold for a long time now, possibly months, before you resume anything resembling a 10% taper. So you put forth a drop schedule of every 7-10 days above? I say "Nope". Not if you still want to have a life while dropping. The effect of the wellb on your sensitized system is likely to become untenable if you persist.

 

As you said, your doc is clueless. But we aren't. Been there, done that, doesn't work. We know of a better way. But you need to slow down, pronto. Read the links we gave you.

[SquirrellyGirl]

Ugh, I forgot to add the video link:  http://survivingantidepressants.org/index.php?/topic/9103-healing-from-antidepressants-patterns-of-recovery-a-video/

 

And CW5600, you're right - that seizure WAS a huge warning sign!  Excellent post.

 

I think being cavalier about one's safety during all of this may be a withdrawal symptom or drug side effect as well :-)  I know while on and dropping dosage of Effexor I had less care about my own welfare. 

 

SG

[Nightingale]

Thank you to you both for your informative replies. I appreciate that you take time out of your lives (unpaid time no less, unlike apathetic doctors) to help!

 

Going to hold on 300 mg indefinitely until I stabilize. Feeling less side effects today, but still decidedly present and uncomfortable. Thinking that, in light of the half-life, switching to three daily doses of 100 mg (which it is manufactured in, thankfully) tablets might help me get to steady state. Have an appt for June 3rd to get a new script, but MY how the days feels eternal when you need a silly piece of paper with some sloppy, scrawled writing!

 

Do you think it smarter to try tapering the Wellbutrin alongside the Gabapentin? I take your words to heart and can't imagine a situation any more untenable! Months ago I just dropped from 300 XR to 150 SR without any taper and didn't seem to feel withdrawal, but probably just blended with the gabapentin withdrawal side effects. Hard to say. The end goal is to be able to sleep/relax somewhat better as I feel ramped up near-constantly and I suspect a NDRI (one that lowers the seizure threshold, no less) is ~not~ helping the situation. Thankfully Wellbutrin also has a fairly short half-life so any withdrawal would theoretically come on faster.

 

Still searching for supplement information, both Wellby and Gabapentin seem to deplete a slew of nutrients.

 

Again, much appreciated, even if the news is not what I wanted to hear. Feels far better to be told to slow down and be patient than to throw caution to the wind, honestly. You're right SG, my concern with self-preservation hasn't exactly been a strong suit! That said, all of these links are very reassuring. Nice to not feel crazy about being crazy

[cymbaltawithdrawal5600]

Mods will weigh in but my off the cuff pronouncement would be to don't dare touch wellb unless something critical happens and plan on holding 6 mos at least on the gaba. May not take that long to settle but it saves you worrying about it. We want you to be able to have a life as you come in for the slide off the last bit of g SLOWLY.

[SquirrellyGirl]

Agreed on the Wellbutrin.  We don't recommend tapering two meds at once, and trying to reduce Well while waiting to stabilize from the Gaba chaos would not help you in the least.  Your nervous system doesn't know that it is stable as far as Wellbutrin is concerned and not stable with regards to GABA - all the neurotransmitter systems are inter-related with feedback loops.

 

I know that it is hard to accept the message to just hold where you are for months, but once you are truly feeling more stable, you will look back and see that you perhaps weren't thinking as rationally "back then."  Withdrawal plays tricks on us and nearly all of us have been that at some point.  Hard pill to swallow and all LOL!  ;-)

 

SG