InTorment: In Serious Trouble

[InTorment]

Hi. I've been reading through the boards on and off for the past few years especially lately. I've never really posted because I've been on gabapentin for many years and have had a lot of trouble communicating on it for the past few years. It gives me the worst cog-fog and just makes my mind feel scrambled to the point I can't even have a conversation. However, that is the least of my worries at this point.

 

I've been on the gabapentin since early 2009 at 2700mg (900mg 3x a day) started for pain but went up more when my pdoc thought it would help my depression and anxiety more. At one point I was up to 3600 but in November 2011 I went off cold turkey for 3 weeks (long story) and after complete hell I reinstated at 2700 and have been on that dose since.

 

Since then, I've tried so many times weaning off but have never been able to. Even less than 10% still doesn't work out for me. The med is so unpredictable that even when I'm not trying to wean, I'll still have withdrawal symptoms because of absorption issues and especially between doses.  Through the years if I eat or drink at the wrong times of day, it worsens things. That's a whole different story.

 

I've noticed the past couple years that it almost feels sometimes it builds up in my system even though it has a 6 hr half-life and you just pee it out (i think almsot all of it is excreted through urine unchanged). Last year, there were times where it felt as though I had taken higher and stronher doses. I would go days straight sometimes feeling like I had just gotten on the drug and things were working again. Then out of nowhere, I would go through days feeling like I was withdrawing even though I'm taking my regular dose correctly.

 

I realized when I wasn't drinking enough water through the day (even to the point of being dehydrated) that those were the days I actually felt my doses strong. That was a real problem because I figured the reason was because it was building in my kidneys or something because I'm not peeing enough out. To test this I would drink a lot more water for a few days. My suspicions were correct because I went through what felt like cold-turkey withdrawal.

 

I was having EVERY withdrawal symptom that comes with it. I can list them all on the bottom or in my signature in a bit. Went through a horrible time from this past February to...well now. I did something very stupid to try and stop the withdrawal. I started drinking less water again and even holding in my pee for a while after I take it and between doses because I didn't know what else to do to stop the suffering. I was so confused and disoriented for so long that that's all I could come up with. 

 

I had my doctor test how much was in my system and to no surprise, the levels were almost doubled to what they should be. She had no suggestion on what to do and tried another doctor which doesn't understand and thinks I'm abusing it probably.

 

Starting in July/August has been what I've considered to be the end of my life. If I drink any water between doses or pee too early between doses, I go through the worst withdrawal of my life now to the point of EXTREME akathisia and now severe dystonia with it which I've never experienced. I'm laying there twisting, contorting shaking and thrashing violently screaming and crying on the floor. 

 

The only thing I can do now is take my doses and the only water I drink now is the 9oz glass of water I use to take it with. I can only pee an hour before I take my next dose or all hell breaks loose. I only eat one meal a day (large). If I don't follow this routine, I go through the worst suffering I could ever imagine. Last time I messed it up, I went through a week at least of me trying figure out any way to ..."end it all" if you know what I mean. I wasn't able to actually go through it at the time because I could barely lift a pound or do ANYTHING at all. I just lay there shaking and twisting and thdrashing and appearing to be convulsing. When I was able to have strength to get up, it would just be non-stop akathisia so severe that I couldn't even look at my pc without it revving me up more for some reason. I wanted to look up the right way to "go" but couldn't even do that.

 

Years ago I couldn't even taper less than 10% and now I can't even do...anything at all really. I've been able to function the past week because I'm following that horrible routine. I really don't know how else to manage it and I cannot believe I let it get this bad but I cannot go through that hell for a second longer. I'd go into more details about what happens to me but I don't want to write a book here because I've already been rambling on enough.

 

All of thus probably makes no sense to anyone and there's SOOOO much more to say about it and to explain but like I said, I don't want to make this longer than it already is. Writing all of this has been my only accomplishment in this past couple months. I had to take several breaks and some time to write it all out but it's something.

 

Hospitals and doctors can no longer help me. If I try to flush/pee/eliminate all of this out of me, it would be like dropping more rhan half of my dose. Even after bowel movements I have withdrawals which means it's probably storing in my bowels as well.

All I can think to do is go cold turkey for a week or two and be hospitalized while going through what I couldn't even imagine so maybe it could lower my tolerance just ebough to go back on my normal dose or something GOD! I have NO clue what to do at this pojnt. I do think my life is over. there;s no way I'll be able to get out of this without permanent damage.

 

Thankyou SO much for anyone that actually read through this and sorry if it was confusing. 

Edited October 11, 2016 by scallywag
tags

[Kay]

My God. I hope you'll get some valuable advice on options here soon. I have cervical dystonia, for more than seven years, I now believe from taking Effexor XR (generic name Venlafaxine). I tried reducing last year on my own, but I did have some symptoms so reinstated, and am now progressing with a very slow taper. Your story sounds so awful. I'm sure there are more options for you than you realize and can think of on your own. 

[Bruin]

Hi Intorment........I just wanted to stop by and say welcome and am glad you are posting.

As you know there are some wonderful and well informed people on this site and I am sure there will be a way through for you.

 

It does sound like complete hell at the moment......proper torment.  I have been in a similar state with Lyrica, albeit for a much shorter time.

I am so glad that you have managed to write out this terrible experience....it is a great achievement in the condition you are in.

It can also mark the beginning of your healing.

 

Am sure that one of the Mods will be along soon.

 

sending all warmest good wishes 

 

Bruin

[scallywag]

Welcome to Surviving Antidepressants (SA), InTorment. I'm sorry that you are having such an intensely painful time right now.
 
I'm going to summarize what you wrote about your medication history and current situation:
 

2007

started 2700 mg gabapentin for pain, 900 mg 3x/day for pain

 

2007-2011

continued gabapentin, some dose adjustments including to maximum of 3600 mg

 

November 2011

cold turkey stop,

after 3 weeks of "complete hell"  I reinstated at 2700 mg

 

December 2011 - today (2016)

2700 mg gabapentin

several unsuccessful attempted slow tapers, <10%/month

became increasingly sensitive to variations in timing of doses and meals

 

2015 Symptoms

felt as if dose was increasing even though it wasn't;  when you drank more water this effect diminished

increased water consumption and elimination resulted in withdrawal symptoms

tests revealed serum concentration was double the expected gabapentin level

 

Current Symptoms

severe akathisia, interdose withdrawal

extreme sensitivity to dose timing, water and food consumption; variation btrings on withdrawal akathisia

 

I've put in an urgent request for other moderators to read your post and assess.

[Altostrata]

Welcome, InTorment.

 

Very sorry to hear you've been overdosed like this. Your doctors have been remiss.

 

Has anyone given you kidney function tests? It sounds like your kidneys are saturated by the gabapentin.

 

It doesn't sound like you are drinking an adequate amount of water for good body functioning.

 

Are you taking any other drugs? If so, please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html
and copy and paste the results in this topic.

 

If not, here's my guess: Very gradually increase the amount of water you drink. You'll have to judge the rate that's tolerable by your own reactions.

 

It's likely you will have some withdrawal symptoms, but if they're mild, keep going. That means your body is accommodating to  (hopefully) a of diluted concentration of gabapentin in your body. It's a kind of pre-taper.

 

Please let us know how you're doing.

[Altostrata]

From our doctors list:

 

• Mark D. Green, MD, Medford, MA
• Bill (Wm D) Slaughter MD, Cambridge, MA
• Judy Tsafrir, MD, Newton Centre, MA
• Harold R. Jordan, MD, Northampton and Holyoke, MA (moved)
• Visions Medical, Wellesley and Dedham, MA
• Bruce I. Goderez, MD Hadley, MA
• Windhorse Integrative Mental Health (inpatient), Northampton, MA

[InTorment]

Thankyou so much, scallywag for summarizing what I wrote. That makes it a lot easier than reading my long confusing post. I appreciate your help.

 

Altostrata: I have been slowly increasing the amount of water but it's been back and forth. I got a kidney function test less than a month ago but came back normal to my surprise. it's weird that sometimes after I urinate, it's like I missed a full dose or more and feel it within the same hour! Thank you for looking it over and offering your suggestion which is the most practical thing I'm sure that can be done in this situation. The doctors list is very helpful as well. I will be making some phone calls. thanks again so much!

 

I'm on no other drugs at the moment. In the past I've been on ADs and other meds on and off which I can add to my signature. I almost got to the point where I was just going to go cold turkey for a week or so and maybe go to the hospital during the worst of it and reinstate to my normal dose when I couldn't take it anymore, but now I've read here a lot about destabilizing the nervous system and that reinstatement might make things worse afterwards. Thank god I read the boards before doing that. 

 

Speaking of destabilzing, would strong interdose withdrawal do the same thing to the cns over time? I've had problems with that for years now.

 

Thanks again for the words and help from you all!

[Altostrata]

Any adverse effects from drugs are not good for the body.

 

You'll have to interview those doctors to see if you can work with them. Yours is an unusual case.

 

You're going to have to go off this drug one way or the other.

 

Yes, one avenue would be to go into the hospital to go off the drug altogether. But there's no way to predict what will happen or if they'll guess right about treatment if you develop severe withdrawal symptoms.

[JanCarol]

Hey InTorment -  I am so sorry for your agony!

 

I don't know why you would want to go back on your "normal dose" after you went through the torment of a cold turkey.

 

Your doses seem high to me - I see that 3600 is the maximum dose - did the doctor check to see if you were getting help at lower doses?  sometimes 900 is enough to get you through the pain.  The dosing instructions say to start at 100-300 mg x 3-4 times a day, and only increase if that is not effective.

 

I am angry on your behalf that a doctor has done this to you.  You were only following what should have been his "wiser & more knowledgeable" instructions!

 

You might wish to read our topic on tapering Neurontin/gabapentin, there is a lot of information about side effects of withdrawal there:

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

 

also, GiaK, a moderator here, has her own blog, where her topic on Neurontin which gets a lot of hits:

https://beyondmeds.com/2009/06/11/gabapentin-neurontin-withdrawal/

 

Aside from that, I'm sorry you had to come to SA, but I'm glad you found us.  We have quite a few people on this drug now.  At least, unlike many other psych drugs, the gold standard Cochrane Review claims it is effective 64% of the time.  That's better than the track record for antidepressants!  

 

My concern for a CT for you is seizures.  Alto is the best of us (she owns the site), she trained the rest of us - so her advice about increasing your water to begin a pre-taper is wise.

 

Maybe there is something here which may help you, too:

Non-Drug Techniques for Dealing wth Physical Pain

https://beyondmeds.com/2013/01/10/chronic-pain/

http://survivingantidepressants.org/index.php?/topic/4482-what-to-do-for-painwhen-you-cant-take-meds/

 

I expect we will see more of people in your straits, as the "war on opiates" continues, and docs become afraid to prescribe painkillers, and so resort to these more "novel approaches."  Here in Australia, they are giving out Lyrica like lollies.  The fallout from this in a few years time - well.  It's another big experiment on the population, isn't it?

 

I hope you crawl out and see some sun today.

[Altostrata]

How are you doing, IT?

[InTorment]

I spoke to a couple doctors. They recommended a 10% taper and said nothing can really be done about withdrawal from it besides tapering and have no clue what to do about going about with all of it built in my system. my primary doesn't seem to believe in too much of a withdrawal from it (as many with many other doctors) but it is real and severe. 

 

Right now I'm only having the interdose withdrawal which can be awful depending on how much I'm peeing or eliminating through other methods (even bowel movements!) It's too extreme even tapering my 5%. It can be severe enough like so it almost feels like I'm tapering or dropping a large dose even when I'm taking it normally. I'm guessing because of the unpredictable absorption problems among the other issues I'm having.

 

All I can think of doing is the cold turkey for a week even though it would probably damage my nervous system even more, but I would hope maybe my nervous system would be sensitive enough to go back onto a lower dose. I've read the thing about how reinstatement is a hit or miss but I just know I cannot taper from this. I get ZERO sleep for days and days just from drinking a little extra water. I really am in deep trouble.

 

I'd rather go cold turkey for a week or so than go from feeling l,ike I OD'd and then withdrawing in the same day every day. I've talked to soo many doctors through the years about this when I just wanted to come off when this wasn't even close to this bad and nobody knew what to do.(psych docs, physicians, neurologist) and from other people's experiences, it's been the same.

 

I already seem to have every possible symptom of dysautonomia and cns problems on top of it so I'm afraid cold turkey might send all this into permanent damage but it seems the way I'm going is going to end up doing the same. Is there a bad track record with reinstatement on a smaller dose after cold turkey for about a week or so? I know gabapentin isn't an antidepressant, but I SWEAR as much as they say it doesn't interact with serotonin or dopamine, it feels otherwise.

 

Thank you so much for reading through all this confusion. I really appreciate it.

[scallywag]

Doing a planned cold-turkey (CT) stop from one or multiple medications is absolutely NOT a good idea. You risk

• intensifying existing symptoms
• creating new symptoms
• prolonging the time you're on medications, because of the extended time to stabilize after a CT.

[InTorment]

i've never been someone to fear much in my life but now i fear everything. the one positive so far I can say is that all summer and september long, i didn't go a whole 5 minutes without thinking about ending my life, I can now go most the day without thinking that and the akathisia, dystonia and a lot of other symptoms has calmed down a little more since the buildup of the gaba is so high in my system but i'm still terrified. never knew that fear could be this strong.

 

sorry to complain. i know not much can be done about this now and I just feel like it's the end for me (and has been for a while now). i have a lot of respect to all the people here for going through the things they're going through and the people that help. this site has helped me a lot more than any type of doctor has over the past few months and in the past even though I just posted for the first time this month.

 

keep up the good work!

[InTorment]

When you say that the existing symptoms and creation of new symptoms occur, do that mean while I'm withdrawing or after reinstatement? The reason I ask is because the doctor wants to try to get all the extra stuff out of my system before I start tapering (we think it might be stored in my kidneys so that I'm basically taking double my dose so if I clear my kidneys of it, it's like cutting my dose in half)

I don't think I'll ever recover from cutting that in half but if I cut it all out at once, i was thinking maybe it could lower my tolerance a bit so going back to my original dose would work again. Does that make sense? 

[scallywag]

New symptoms and intensifying of existing ones could happen at any time after a cold turkey stop. It might be right away, it might be after the planned reinstatement you mention.

 

I understand your thinking about dealing with the w/d from a CT short-term. Unfortunately there's no guarantee that the symptoms will be of short-duration.  On the other hand, kidney function is very important.

 

Have you tried minute increases in your water consumption yet?

[InTorment]

yes. been increasing water but my urine volume is still extremely low. the less i pee, the more it builds. the edema in my legs is getting pretty bad from it. i guess the doctor wants to try a diuretic to get rid of the edema at least but once I'm on that, out comes a bunch of the gaba at once. she doesn't really believe in gabapentin withdrawal so she doesn't seem to think it's a big deal. at least she pretends to understand that i'm having trouble with getting off even though she makes faces like it's all in my head. 

i'm done for either way it seems. wouldn't these interdose withdrawals (which can be so so severe) be doing a lot of damage to my nervous system over time as well?

[scallywag]

Your doctor is a treat. You are in an unenviable position: test the hypothesis that the gaba is not being metabolized properly by your kidneys you have to reduce the dose, thereby risking CNS (central nervous system) destabilization.

 

Your choices are awful: kidneys overloaded with gabapentin, which is undoubtedly affecting many other processes, versus risking the CNS destabilizing of rapid tapering/CT stop of gabapentin.  I know what route I would choose. But your kidneys, your CNS, your body are your decision.

[InTorment]

Still in the same place I've been for a while now with the high levels of gabapentin since the last time reporting (still probably double the amount of my normal 2700mg dose). Since I am now have very low urine output, the doctor is concerned that it is hydronephrosis and thinks I should go to the hospital and get a catheter to avoid more problems. Unfortunately, like I've stated before, if this happens, there goes a large portion of the stuff backed out of my system which will lead to severe withdrawal that they will most likely not know how to treat. No hospital around here ever did know.

 

I was thinking for a while that maybe something else that would help stop the excess glutamate that the gabapentin is usually blocking. However, I read something a while back from ALtostrata stating that treating problems with glutamate is not that easy and that blocking it too much might make things worse or something...I really don't remember what it was. This stuff destroys my memory so it's hard to remember.

 

I was wondering if any light could be shed on the glutamate issue and if there's been anything new that may have been figured out about it. Maybe calming the glutamate storm until I can figure this out will have less detrimental effect on my CNS in the mean time. If Altostrata or anyone else knows anything about this and can share, I'd appreciate it a lot. If not, it's cool. 

 

Thank you!

[Altostrata]

I would get the kidney problem treated.

 

I am very sorry. I do not know how to get you off gabapentin except by tapering at a slow, moderate, or fast rate. I do not know how you can avoid withdrawal symptoms while you do this.

 

I don't know anything about adding drugs to your situation. You are overdrugged already. Your problem is in the GABA system, which benzodiazepines also affect. I would not fool around with any drugs affecting glutamatergic transmission.

 

As you're working with a physician who's concerned about your kidneys, you could ask to be hospitalized for kidney treatment and withdrawal from gabapentin. They probably would take you off rather quickly, and possibly treat any withdrawal symptoms with benzodiazepines or antipsychotics. I would try the benzos first and avoid antipsychotics if possible, and decline antidepressants.

 

Very sorry you're in this position and that I don't have any special knowledge to help you.