Paradoxical reaction on gabapentin?

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leggo_my_legs
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Paradoxical reaction on gabapentin?

Postby leggo_my_legs » Sun Feb 24, 2019 3:55 am

Wondering if anyone has experienced muscle spasms, abnormal movements (big jerks--literally and figuratively :lol: ) and muscle cramping on gabapentin? Dose was 600 three times a day. Also having intolerance to heat, hot/cold, shivering, and elevated blood pressure, and night sweats. Also just getting over a bad flu, to complicate things even more.

I'm pending full neuro workup unless I can blame the above. Actually had to leave work because I was flopping around uncontrollably in my torso. Psych blames neuro and neuro blames psych. I am somewhere in the middle.

Also is there a discontinuation syndrome for gabapentin? I hear different things. This whole thing is making me a little crazy.

stjohnh
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Re: Paradoxical reaction on gabapentin?

Postby stjohnh » Sun Feb 24, 2019 3:28 pm

Really hard to say with the flu complication. I was tapering off all my RLS meds after IV Iron infusion when I got a bad cold. Immediately my RLS symptoms started returning. I kept on with low dose kratom rather than trying to continue my kratom taper to avoid worsening RLS and also because kratom is a very good cough suppressant. Anyway, my cold has resolved, RLS symptoms back to minimal, and I am continuing my kratom taper. Long story to suggest that until you are really over the flu, that it is hard to say much about the other symptoms.

I haven't heard of the type of symptoms you describe with gabapentin. Some of them (muscle spasms, jerks) could be related to the BID (Brain Iron Deficiency) that causes RLS, and exacerbated by the gabapentin or flu. By far the most common side effect of gabapentin is daytime sleepiness/zombie feelings. Other common side effects are nausea and dizziness.

The intolerance to heat, hot/cold, shivering, elevated blood pressure, and night sweats are almost certainly not related to gabapentin. The only psychiatric symptom reported to occur with gabapentin with any frequency is suicidal ideation.
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sleepdancer2
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Re: Paradoxical reaction on gabapentin?

Postby sleepdancer2 » Mon Feb 25, 2019 4:36 pm

Jerky movements are a listed potential side effect of neurontin. I would discuss that with the prescribing doctor yesterday. Also check any other meds you are on for extra movements being a possible side effect. I had extra movements on Sinemet, Mirapex, and Requip. The Sinemet movements looked different from the others. Extra movements on some meds can be of real concern and should not be ignored. Not sure which meds I read that about, but I think they were psych meds. At any rate I suggest you insist your doctors pay attention and figure this out. And of course, use caution when coming off any med. If they reccommend weaning, it is wise to do so. I went off a dopamine agonist abruptly from a high dose and had some permanent neuro effects. My experience on Neurontin was at such a low dose it would not be enough to be of any help. Good luck with things.
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QyX
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Re: Paradoxical reaction on gabapentin?

Postby QyX » Tue Feb 26, 2019 7:58 pm

I had all kinds of weird and paradox reactions to Lyrica. I know, it is not Gabapentin but both drugs are similar, chemically and in the way they affect the CNS. Long story short: Lyrica made my RLS a hole lot worse, especially the pain in my calves.

Gabapentin I tried once for a few days. I got really cold feet from it, so much, that it was extremely unpleasant.

Just in general all kinds of antiepileptics can have weird and paradox side effects.

Some people tolerate them well. Other's do not.

I guess you will have to monitor the situation and speak to your doctors if you have to reduce or potentially even stop Gabapentin.

Potentially almost every drug has some kind of "discontinuation syndrome", especially when they affect the CNS. However your dose is relatively low. So it is unlikely that you will have any serious withdrawal symptoms, even when you are forced to stop Gabapentin cold turkey.

Are you taking any other drugs for your RLS?

leggo_my_legs
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Re: Paradoxical reaction on gabapentin?

Postby leggo_my_legs » Sat Mar 02, 2019 7:15 am

Thanks so much, you guys.
I take oxycodone 10 mg for the RLS which is very effective. I've been on it since a year ago October.

Does anyone have a link to video of augmentation movements of trunk? I'm curious if augmentation is what's causing my involuntary movements. I guess even if it looks like a video, abnormal movements can be caused by other stuff too. It's horrible. Worsened by caffeine and activity. All this came up after having been sick for 6 weeks with flu/sinus infection...finally got over that, then had massive bout of fatigue, then stopped being able to walk in a straight line, and started having trunk movements, night sweats, etc.

I was put on valium short term which has stopped the movements, but this is no long term solution.
I got the mini neuro workup, ie brief exam plus noncontrast MRI. MRI showed 4 white matter spots in frontal lobe but those have been stable since 2015; neuro says those are found in patients with migraines or other issues, no big deal.

I've been concerned about MS possibility, with this weird flareup after flu and symptoms worse with heat. Neuro says go to physical therapy to help you walk a straight line and return for further assessment after physical therapy. :? Whole situation is very confusing to me.

ViewsAskew
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Re: Paradoxical reaction on gabapentin?

Postby ViewsAskew » Sun Mar 03, 2019 4:53 am

I hope you get some resolution, soon, leggo. I totally understand that feeling of being in the middle of several docs and no one sure what is happening, but clearly someone is going on. The MS possibility would be scary to anyone.
Ann - Take what you need, leave the rest

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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
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Re: Paradoxical reaction on gabapentin?

Postby leggo_my_legs » Sun Mar 03, 2019 7:32 am

Thanks, ViewsAskew.
My friend with fibromyalgia brought up that maybe this is fibromyalgia. I hadn't even thought about that but that seems like it may be more likely than MS. I've had chronic pain for at least a decade. It flares up and down independent of anything I've been able to identify, sometimes to the point where it’s quite painful to walk or stand. I didn't realize that fibro also flares in response to infections. Sleep disturbance, hot and cold sensitivity are also symptoms of fibro. And twitching.

Why wasn’t the fibro possibility brought up by my MD as a differential? I am fed up with the medical establishment. Why are myself and my friends the only people who seem even remotely interested in finding out an explanation for my symptoms, which have become debilitating?

Why do I have to be the one to tell my MD the conditions that I’m concerned might be causing this, instead of the other way around? Isn’t that the MD’s job, to diagnose you and talk with you about the treatment plan? They offer no information regarding what might be causing this, then are suspicious and think you might WANT to be sick, or are a psych case, because you’re looking on the internet trying to figure out the cause of your symptoms. Newsflash: I’m looking on the internet in an effort to find a cause, in an effort to be able to ask educated questions, so I can GET BETTER and RETURN TO MY PREVIOUS ACTIVITIES, one of which being WORK!

They don’t even discuss the results of the neurological exam performed on me. They just have me do a bunch of tasks, stand up, squeeze their hand, etc and then it’s done without even discussing their findings with me. How about sharing your knowledge and power with me? I’ve taken to getting cc’s of my hea.(lth records after the visit so I can understand what they think because they certainly don’t discuss it with me most of the time.

After getting sick this time, I was trying to work with my MD to identify the reasons why I get so sick every year and it lasts forever. I suspect I have an underlying immune or autoimmune disorder, but haven’t been able to get very far in testing because my PCP can only order some tests, and I don’t “meet criteria” to be referred to other specialties that can order the rest of the tests.

I’m sorry that my body doesn’t present illness in the way that the majority of people do, to make it easily identifiable. That’s not in my control. I’m sorry that I’m not rewarding enough to work with, or whatever, so doctors would take an interest in me. I’m sorry I happen to also have anxiety. I’m still a person and I still deserve some answers, not just the cop out “most of the time we aren’t going to know why.” What do you mean? How do you already know you aren’t going to know why, even before running the relevant tests?

At the same time that my insurance company seems quite disinterested in getting to the bottom of things, they also seem reluctant/suspicious regarding my request to produce documentation to my employer re my need for time off, despite the symptom diary I have been keeping. They have no discernible treatment plan for me at this point except for physical therapy to try to regain my balance and other than “a few more days off,” and “we might have to help you get back to work despite your symptoms.”

Rest assured, I would like to get back to work! Yet how do we help me with that when there is no treatment plan to suppress symptoms or explanation offered? Is the solution that I keep having socially unacceptable involuntary movements in front of everyone until god and everybody knows my what my health issue consists of right now?! Am I expected to keep crying from exhaustion between clients, and walk down the hall with a spastic gait? Do I have to be the perfect BMI with the perfect “wellness” health behaviors before anyone gives a rip about me?

I'm over the flu for about 2-3 weeks now, except now the weird constellation of symptoms. I'm having all kinds of motor problems, problems typing the wrong letter first or double letters, can't walk heel to toe in a straight line, it's bizarre. Nobody has brought up the idea that these symptoms might be related to having been so sick for so long; maybe it’s some kind of CNS post-viral syndrome and my body is just out of balance partly from the virus and partly from having been so sedentary for 5 weeks. Why hasn’t anyone said THAT to me?

Instead, they want to send me to physical therapy—god only knows how many weeks it’s going to take me to get an appointment there, and THEN come back to see if I’m better. I’d like to get better; it’s not my fault they aren’t maintaining a sufficient network to get patients seen in any decent timeframe. Why not? They can afford to have a larger network. Because they want the profits. Meanwhile, it’s ok for me to be going around having difficulty walking, and yet I am viewed with suspicion for feeling that I need time off work for proper rehabilitation so I don’t end up exacerbating my condition.

ViewsAskew
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Re: Paradoxical reaction on gabapentin?

Postby ViewsAskew » Sun Mar 03, 2019 7:49 am

Have you read the book, How Doctors Think? Really helped me understand some of the answers to the questions you posed. One of the takeaways is that when it's gets beyond a doctor's easy answer, they get frustrated, too, and they cannot admit they cannot solve it, so they simply start to ignore you and repeat the same things over and over. At any rate, highly helpful read, I thought.

I can imagine how frustrating it must be to feel this way and have so few answers.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
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Re: Paradoxical reaction on gabapentin?

Postby leggo_my_legs » Tue Mar 05, 2019 7:05 am

Great suggestion, I will check out the book!

That was a pretty epic rant on my part, lol. It took me an hour to write it as I kept falling asleep.

I found out today that the physical therapist I'm going to tomorrow is a neurological physical therapy specialist. That would have been really helpful to know at the time of referral because that gives me hope that I'm being taken seriously. At the time it was recommended, I just thought I was being pawned off on someone else and I thought 'great how is a bunch of leg lifts going to help me?'

I'm off the gabapentin now and my symptoms continue to worsen. It seems like I'm on the upswing in terms of being take seriously which was not entirely being communicated to me before so I feel a little better. I was so emotional because I was terrified of being "left here" with no answers or help. I wasn't even thinking straight because I was so panicked about being left like this!

I've tried some experiments and have continued to document the results and do things like count my involuntary movements within specified periods of time to give the MD an idea of what I am going through.

ViewsAskew
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Re: Paradoxical reaction on gabapentin?

Postby ViewsAskew » Tue Mar 05, 2019 10:15 am

Hope you get some answers, leggo.

I think whatever is going on with me is likely some silly thing...but as my body continues to do weird stuff, I understand the frustration!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
Posts: 343
Joined: Sun Oct 16, 2016 12:29 am

Re: Paradoxical reaction on gabapentin?

Postby leggo_my_legs » Mon Mar 18, 2019 2:19 am

Thanks, Ann. The neuro PT discharged me after one visit, saying I have no neurological problem.
I restarted the gabapentin, thinking I was worse off it, but have now also read somewhere that if gabapentin is **causing** a drug-induced movement disorder, and you stop it suddenly, for some reason the movement disorder still gets worse for some highly technical reason (I can't re-explain it), so you have to taper off. So now I'm tapering off the gabapentin and crossing my fingers that this is what the problem was. Nightmare.

ViewsAskew
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Re: Paradoxical reaction on gabapentin?

Postby ViewsAskew » Mon Mar 18, 2019 5:08 pm

Sorry, leggo - was on vacation last week and not checking in often. This week I am paying as I have to get about 40 hours of work done for my classes in the next two to three days, lol.

Hope the taper helps.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
Posts: 343
Joined: Sun Oct 16, 2016 12:29 am

Re: Paradoxical reaction on gabapentin?

Postby leggo_my_legs » Wed Apr 10, 2019 2:57 am

It was the gabapentin. I don't recommend that drug or any of it's cousins. Be very careful. It caused all kinds of side effects while I was on it, and coming off it was even worse.

MD put me on the standard "fast taper" of a few weeks. I had to stop and stabilize and now I'm microtapering. The withdrawal from it is like withdrawing from a benzodiazepine (they tell me), only much worse. Worst thing I've ever been though. I thought I was going to die when she fast-tapered me; I didn't know what was wrong. I had a will taped above my bed. Now I am stabilizing on 100 mg 4x/day. It's going to take me months to come off it.


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