Gabapentin a remedy for insomnia and akathisia? Here's my personal story

[[a1...]]

My wife has had 7 mo of akithisia and insomnia that led to psychosis, hair loss ect. I am going to share with u her personal experience. Warning: I do NOT by any means encourage taking medications more than prescribed or to do what my wife did. This is not medical advice. But the outcome of this is so amazing I feel I have to share our experience with everyone. This medication could possibly be a solution under the care of a physician for someone suffering from relentless akithisia and insomnia. Here's our experience: After 7 mo of severe akithisia and insomnia, my wife was hospitalized in psych for 4wks to try  to get the akithisia and insomnia under control. They tried haldol, amantine or something like that, letuda, zyprexa, lithium, trazadone, visteral, proponolol, clonidine, and congentin. None of them helped. Flumenazil is one u have probably heard of and the dr was going to try it but then didn't and then discharged her all of the sudden. I think he just gave up. Two days later she overdosed on gabapentin which was a medicine she had been prescribed for ten years. She was desperate to try to sleep and wasn't a suicide attempt. She brought herself to the er and she ended up having multiple seizures and fell and hit her head in the hospital. She didn't talk for a couple days but was awake and slowly came around but still has some temporary short term memory loss. But its getting better quickly. She was extremely lucky. The seizures were not caused by the gabapentin(its an anticonvulsant), they were in fact caused by the insomnia. That is how out of control the insomnia had become. The reason I'm sharing this is because after 7 mo of insomnia she was able to sleep for 3 days straight. Her insomnia and akithisia disappeared. They held the gabapentin for several days since she had overdosed on it and by the end of the week her insomnia started to come back but wasn't as severe. My theory (her current neuro and psych dr at this teaching hospital both agree with this theory) is the overdose of gabapentin upregulated her gaba receptors which then lowered her glutamate levels. High glutamate levels are what cause the insomnia and akithesia. So she in a sense "cured" herself. I don't by any means promote overdosing on medication and it just happened by chance that she picked that med to overdose on. But it did end up keeping her symptoms under control. So the drs put her back on her original dose of gabapentin 900mg 3 times a day in hopes this theory is correct. Its almost like she needed a large dose to get a control on the akithisis and insomnia and now needs to keep taking her original dose to keep the symptoms under control until the brain heals itself.

Again this is what worked for her and everyone is different but I thought it would be worth mentioning. I was desperate for anything to help so it would be wrong of me not to share my experience. We don't know 100% that this will work but so far it looks promising. It might be helpful to talk to your dr about trying gabapentin to help. Also I've read L-theanine, Taurine, chelated mg, and fish oil have helped some but we haven't tried those. Another med I did some research on is memantine(different than the amantine listed above). It is an anti Alzheimers med but it lowers glutamate also. And if u think about it, it makes sense because benzos along with other horrible drugs are all anticholinergics which have been known to cause dementia because they lower acetylcholine which is a good thing we need. Low acetylcholine causes dementia and anticholinergics like benzos lower acetylcholine. So the fact an anti Alzheimers drug like memantine makes sense that it would help with this. There are alot of uneducated doctors out there and if they say this theory is wrong, then find a dr who is willing to listen and connect the dots and see how all this connects to each other. Just because a drug has a label for something, doesn't mean it wouldn't help for something else. Anyway just thought this was important to share. I wish u all the best!

[[Jo...]]

Interesting theory-- please keep us posted on how it goes with your wife. I don't know if other members have experience with the drugs you mentioned but perhaps someone who has tried those drugs might chime in (I know several on here have tried gabapentin).

[Guest [vi...]]

very very interesting story and a very interesting hypothesis. your wife's story reminded me of billybats. i think he went through a similar experience -- he could not stabilize on a reinstatement and his primary complaints (both in tolerance withdrawal and withdrawal) were insomnia accompanied by akathisia. he too was a short term user -- few months. he finally did a rapid taper in a rehab.  you can read his past posts to share notes and then contact him if you wish.

[[Si...]]

I was on gabapentin for years and it took a long time to wean off of it. I kept getting extremely angry if I went too fast. I was well off of it by the time I acquired akathisia from Clonazapam. I have read about glutamate being the main excitatory neurotransmitter and tried several supplements that supposedly lower it but all of them made my insomnia worse and gave me cramps.

My insomnia is worse than the akathisia.

good luck with the recovery. Everyone is different and it can be a trial and error to find the fix which seems to be different for everyone.

[[a1...]]

Hi everyone. Thank you for the thoughtful responses and feedback. I wanted to give an update on the original post. I couldn't figure out how to add an update to my post so I had to reply to the thread instead. Towards the end of her hospital stay they started to reduce the gabapentin, keppra, and vimpat. She began to develop mild insomnia after they did that. I stressed to the doctors my concern about her symptoms returning and the importance of staying ahead of the symptoms before they get out of control. They didn't do anything and discharged her. A week later she had another seizure. (This proves my gabapentin theory again). We called the hospital that was treating her and they had her come in for an emergency neurology follow up. We saw a physicians assistant and all she did was keep the medications the same and actually got defensive when I asked her about high glutamate and low gaba causing seizures, akathisia, and insomnia. That appointment was a waste of time. I'm learning that in the United States at least, you really have to be your own doctor and do your own research, show them the research, only for them to point the finger at the other specialist. Neurology told me they won't help us and to ask a psychiatrist, and the psychiatrist told us they won't help us and to ask neurology. Its a very alienating and lonely experience. She has a neurology appointment at a different clinic tomorrow. I am hoping they take the akathisia, insomnia and seizures seriously and are willing to help us. I am hoping they prescribe some type glutamate blocker like memantine. If not, were going to the emergency room at the hospital who treated her over and over until they get sick of seeing us and start taking this seriously. Were also considering the Mayo clinic in Rochester, Mn. I am wondering if anyone has had similar experiences with doctors and their unwillingness to help? I will keep you all updated after tomorrow's appointment. Hope everyone is doing well.

[[Jo...]]

Yes unfortunately I've had quite the run around with doctors punting me to another doctor when they don't know what's going on and don't feel like dealing with it. Saying a prayer for you both.

[[mo...]]

I am on the same quest as yourself. I am suffering with what I and my dr are convinced are simple partial seizures. I've had an EEG and will be getting the results on Tuesday. I am on 1800mg of Gabapentin. I don't have too much trouble sleeping or pacing, but these purported seizures are slowly killing me.

 

Based on much research, I am convinced glutamate is the culprit of my seizures. I have been researching various AED's and the one that interests me the most right now, is Lamictal. Specifically for the same reason memantine interests you, the glutamine factor.

 

Quote:  Lamotrigine is a synthetic phenyltriazine with anticonvulsant properties. Lamotrigine enhances the action of gamma-aminobutyric acid (GABA), an inhibitory neurotransmitter, which may result in a reduction of pain-related transmission of signals along nerve fibers. This agent may also inhibit voltage-gated sodium channels, suppress glutamate release, and inhibit serotonin reuptake.[2] It is generally accepted to be a member of the sodium channel blocking class of antiepileptic drugs,[3] but it could have additional actions since it has a broader spectrum of action than other sodium channel antiepileptic drugs such as phenytoin and carbamazepine and is effective in the treatment of the depressed phase of bipolar disorder, whereas other sodium channel blocking antiepileptic drugs are not, possibly on account of its sigma receptor activity. In addition, lamotrigine shares few side-effects with other, unrelated anticonvulsants known to inhibit sodium channels, which further emphasises its unique properties.[4] Lamotrigine is inactivated by glucuronidation in the liver.[5]

 

If in fact I am diagnosed with epilepsy, and have to consider a new medication, this is the one I'm going to ask about because other AED's that I've read about, don't specifically target that mechanism of action.

 

I personally think you are on to something. I commend you for your efforts in taking such good care of your wife.

[[a1...]]

Thanks for your responses everyone. Mommyo4 I also think u are onto something with thy the seizures. It is very validating to hear someone has the same theory as me. Doctors are pretty much scared and not knowledgeable. We went to the neurology appointment and he said he had never heard of akathasia being caused by benzos, only antipsychotics so he thinks its in her head and should talk to a psychiatrist. But he would be willing to address the seizures. I asked him what it mattered it is still tut same symptoms in front of him so why won't he help us? He was useless also. So we went directly to the hospital who recently discharged her. We met two amazing doctors in the ER who actually listed to us and were willing to try congentin which is a glutamate blocker. It hasn't helped so far but only has had one dose. What's interesting is the clonidine worked better this time when before it didn't even touch her, and that was only a month ago, so hopefully that means her brain is starting to heal. She is voluntarily going to psych because she feels impulsive so I'm not sure if they will continue the congentin but I'm going to be on them to make sure they don't prescribe anything bad that can make it worse. I'll keep u all updated. Hang in there guys. We can get through this. Remember we are all experts on this more than our doctors and have probably done more research than they have. We have each other and we're not alone.

[[bi...]]

You are a good man!. My wife is going above and beyond for me also. Thank you for all you are doing f or your wife on behalf of all of us suffering.

[[Re...]]

How long has she been takimg the gabapentin? Did insomnia and seziures start while on it? Could it be tolerance withdrawl and that is why increased dose helped? Hope things are improving.

[[Re...]]

I am on the same quest as yourself. I am suffering with what I and my dr are convinced are simple partial seizures. I've had an EEG and will be getting the results on Tuesday. I am on 1800mg of Gabapentin. I don't have too much trouble sleeping or pacing, but these purported seizures are slowly killing me.

 

Based on much research, I am convinced glutamate is the culprit of my seizures. I have been researching various AED's and the one that interests me the most right now, is Lamictal. Specifically for the same reason memantine interests you, the glutamine factor.

 

Quote:  Lamotrigine is a synthetic phenyltriazine with anticonvulsant properties. Lamotrigine enhances the action of gamma-aminobutyric acid (GABA), an inhibitory neurotransmitter, which may result in a reduction of pain-related transmission of signals along nerve fibers. This agent may also inhibit voltage-gated sodium channels, suppress glutamate release, and inhibit serotonin reuptake.[2] It is generally accepted to be a member of the sodium channel blocking class of antiepileptic drugs,[3] but it could have additional actions since it has a broader spectrum of action than other sodium channel antiepileptic drugs such as phenytoin and carbamazepine and is effective in the treatment of the depressed phase of bipolar disorder, whereas other sodium channel blocking antiepileptic drugs are not, possibly on account of its sigma receptor activity. In addition, lamotrigine shares few side-effects with other, unrelated anticonvulsants known to inhibit sodium channels, which further emphasises its unique properties.[4] Lamotrigine is inactivated by glucuronidation in the liver.[5]

 

If in fact I am diagnosed with epilepsy, and have to consider a new medication, this is the one I'm going to ask about because other AED's that I've read about, don't specifically target that mechanism of action.

 

I personally think you are on to something. I commend you for your efforts in taking such good care of your wife.

 

 

 

Any chance seziures are tolerance withdrawl from the gabapentin? Did you experience them prior to taking the drug? I have been considering taking it as I am struggling but I am reading alot about people having seziures, anxiety, insomnia after a few months of taking the drug that stabalized after coming off the medication. I guess like benzo tolerance.

I hope you are feeling better

[[mo...]]

I have considered that, recoveryneeded3.

 

To answer your question, my history is I haven't been aware of having seizures before gabapentin. (I've learned some types of seizures can go undetected however)

 

18 months ago, when I did the five day taper(Drs order), I began seizing on day 3 and it continued on for about a week and a half, putting me in the hospital twice. I was horrific, but seemed to subside over the next week or so.

 

Also, it couldn't be tolerance so early on in taking it, because I was on a very low dose at the time as I was just starting the titration of the Gabapentin.

 

My seizures had to be due to the rapid benzo withdrawl.  For the last 18 months I have assumed my horrible symptoms that have remained, are due to protracted withdrawal syndrome.

 

Six months into my healing, I tested that same theory, however, that maybe it's the gabapentin that is making me so sick, and so I began to taper off of it, as I did so(which was horrific as well), I found myself again having recurring seizures throughout the night, and found myself back in the hospital.  I hadn't had those since the first week of benzo withdrawls! I went back on Gabapentin, and although I still felt horrible, the seizures subsided again. So I can only surmise the Gabapentin is not the culprit, but was actually keeping seizures at bay(which make since since it is an AED)

So here I am a year later since the failed gabapentin taper, and have endured life with the acceptance that this is all part of the healing process(even though I don't feel any better than last year )

 

But then I had a terrifying experience a month ago that sent me running to the neurologist to make sure I wasn't close to having a seizure. He was convinced I did. So now I find myself nervously waiting for the results of an EEG.

 

I truly wonder if benzo c/t triggered epilepsy. Honestly though, if there is something that can be done, an underlying disease that can be treated, I'm okay with that. I just want my life back.

[[a1...]]

Hi guys. Wanted to give another update. While waiting at the hospital the akakathisia completely went away. It was either from the 1mg cogentin or 1mg clonodine they gave her in the ER. It was the craziest thing because all her obsessing about not getting off of it sooner every 2 min and akathisia were completely gone just like she was after taking the large amounts of gabapentin. She decided she didn't need psych and we went home with a five day script for these meds. The next few days have been very confusing since her akathisia seems to be controlled well by the cogentin, however, she has had an intense amount of terror and constant obsessing literally every 30 seconds bringing up the fact this all could have been avoided and constantly blaming me that it's my fault she's sick for not telling her to get off the benzos sooner and not telling her they were addictive. I'm thinking it might be the clonidine causing this but hard to tell. I will see what she is like after not taking it for a day. Just wondering how I can best support her and cope through these blaming obsessions and if anyone could give any insight into why she is so fixated on this. Thanks guys.

[[a1...]]

Recoveryneeded3: U make an interesting point. She has been taking gabapentin for ten years with no problems. Only until benzos did these symptoms start, specifically akathasia which is probably caused from high glutamate, low gaba and low dopamine. Gabapentin increases gaba which then in return lowers the glutamate. Which is probably why the symptoms disappeared temporarily. I think her glutamate is too high for her standard dose to have any affect on..Which is why adding a glutamate blocker and dopamine increaser like cogentin might be helping. They said the seizures were probably from sleeping 3 hrs a night for 7 months but its anyone's guess. I'm starting to think that gabapentin might not be strong enough on its own to reduce benzo symptoms since no dr is willing to give that high of a dose, but it could help in conjunction with a glutamate blocker such as cogentin or memantine. Drs seem to be less nervous prescribing cogentin over memantine. Hope this info helps some. Hang in there!