Pregabalin

Hi all!

Approximately 3 weeks ago I was at a neurological clinic where a nerve measurement was performed via "electric shocks". A day after this I had a bad pain in the leg that had been tested. It turned out this pain is neuropathic pain. I never had this kind of pain before.

I fear this problem might remain for good I consider taking Pregabalin in the hope the leg may "recover". The idea is to take it only for a short time, not highly dosed.

Do you have experiences with Pregabalin or with this problem? I didn't read the nicest things about this drug...

 

Did you ask at the clinic what they believe ? They must have met with this problem after that test before.

 

Thank you @adambeyoncelowe!

Amitriptyline belongs to the class of anti-depressants, and these are contra-indicated in my case.

But I also don't feel sure with Pregabalin. (Do I slightly recall GABA was elevated? Would that be a problem?)

I am also not so sure if Amitriptyline is used for neuropathic pain, or more for general pain?

 

The clinic didn't reply! But maybe I should contact them again.

The funny thing is they didn't tell me anything about possible side effects before the test, and afterwards they told me everything was normal.
Not for me. I can't use the leg properly since then.

 

I think you should. That is a serious side effect from a test. Maybe they know that the symptom will go away by the time, but they should at least communicate with you. Could you write to the head of the clinic, preferably an e-mail so you have it as a proof?

 

I have totally mixed feelings about this drug. I was on it 5 years ago for migraine and nerve pain.

It was a fantastic drug for the migraine and also helped with some of the ME pain. It also gave me energy, but in a hyper wired way.

The downsides:

* An insatiable appetite, hunger 24/7. And even though i didnt eat more (back then i had to choose between my ME supplements or food as i was in dire poverty) I still put on weight and the weight kept increasing.

I was stick thin to begin with but I put on over a stone in weight and i’ve been trying to remove it for the last 5 years (was only on the drug for about 2 months)

I’ve only just this year got back down to my original weight, through fasting and keto.


* A feeling of increased energy and being hyper to the point of bouncing off the walls. At first i thought it was a miracle drug, I’d spent 15 years barely having the strength to talk then within days not being able to stop talking!!!! I was even starting to irritate myself! It was great fun, and such a novelty but I repeatedly suffered PEM because of it.


* Altered consciousness: its as though whatever level of consciousness i live in, that has enabled and housed the migraines since I was 4 years old, was completely switched off and changed to a different level of consciousness.

I was still me, but my consciousness was different in a way that words can’t describe.
After a couple of weeks, i had 2 strange experiences.

I was standing at the top of the stairs, (i live alone) and from nowhere, i felt the pressure of an open hand on my back, that tried to push me down the stairs. If i wasn’t holding on at the time i don’t know what would have happened. It really scared me.

A week later, i was out with my partner. Enjoying my new fake energy. I was standing at the side of a road waiting to cross. A double decker bus was passing. Just before the bus reached where we were standing, that same invisible hand pushed me out into the road. If my partner hadn’t pulled me back, i’d be dead.

Each time was very distinct, and both times i felt the exact shape of a hand in the middle of my back between the shoulder blades and was pushed exactly the way a person would push me.

At the time, I looked it up and it said a rare side effect can be suicide. Which got me thinking that I would have been one of those statistics had i not been lucky. Both of those experiences could have passed as a suicide and i wouldn’t have been around to be able to explain otherwise, which creeped me out at the time wondering if others had had an experience similar to mine but weren’t as lucky.

Its such a shame as the drug was very effective for pain but it wasn’t worth living in the twilight zone for.

I did mean to experiment at the time with varying doses or similar drugs but i was very nervous.

So yeah, its a great drug. I actually really liked it! But the associated strangeness for me was just too much (not to mention dangerous) so if you do try it, maybe start on as low a dose as possible and watch your back (literally lol)

 

Thank you @adambeyoncelowe, for all this valuable information! Do you have experiences with Clonidine? Right now it sounds more interesting than Pegabaline. I have to look it up though...

You're right @Helen, I should contact them again. I wrote two eMails to the professor, and I think she might be one of the heads (or so), but she didn't reply.

Wooah, @Hell..hath..no..fury..., that is awful what you describe, what a horror story! Oh gosh, I don't know if I should try Pegabalin...I have read about other side effects, but that's pretty scary. What was the dose you took? I thought about starting with once 25mg, and then once 50mg - ah, and only short-term, in hope the pain will disappear for good; for the next years at least.

 

@Inara i’m just off to look for an old box...

Edit: 50mg so yeah maybe a 25mg dose might be okay

 

So you had these side effects with 50mg?!

 

Yep!

 

Fuuuuck

Thank you all for your help! I am very happy.

 

I have called the clinic today.

They told me they have never ever heard of such a reaction before. They claim they have searched the literature worldwide (in an hour or so) and there is not one such reported case (sure they know). They say it simply cannot be possible that my pain is a consequence of the electroneurography, and the ENG itself showed no abnormalities (guess what - I didn't have this pain then because I never had it before). They won't prescribe medication without indication. They actually told me it's in my head.

I don't know what to do.

I found one case of a person (with rheumatism) who had pain and paralyses after an ENG.
https://www.onmeda.de/forum/rheuma/134363-lähmungen-und-schmerzen-nach-elektroneurograp
It nearly seems people don't want to talk about side effects of ENGs!

 

I'm definitely thinking about it. I already wrote my lawyer about what's going on. But this won't "bring back" my leg. I have called the Independent Patient Counseling (UPD= Unabhängige Patientenberatung in Germany) and a Neurologist will call me next week. I have found three cases of people with serious side effects up til now. Always the doctors said it can't be the ENG. And always, those people had their problems starting with the ENG.

I will talk with my GP about Clonidine. Do you know if you should be cautious with it if there are (or could be) calcium channel issues?

Do you know any alternative approaches, like warmth and rest or so?

 

So ENGs generally cannot be the cause of your experience because there is no reported case similar to your experience, therefore we will not report your experience and dismiss it entirely. Cool strategy...

 

I took Pregabalin for a few (perhaps three?) months a few years ago, for pain that was declared to be neuropathic. I'm not even slightly convinced that the pain is neuropathic though.

I don't remember the dose I took, but I couldn't stay on it for very long because it made me sleep for about 16 - 18 hours out of every 24 hours. I want to have a life of some sort, if at all possible. I don't want to be completely non-functional if I can avoid it. So I gave it up after a while, and never regretted it. I don't recall it having any major impact on the pain it was prescribed for.

 

That's what I thought, too: "Bugger off with your 'We're doing thousands of ENGs a year and never observed that'." There's always a first. Besides, I have found 7 examples with awful side effects. Those people were always told this can't come from the electroneurography.

 

@adambeyoncelowe, thank you so much!

@Arnie Pye, that doesn't sound too great I think increasingly I shall not take it but consider the alternatives instead

 

My GP won't prescribe Clonidine because it would be an off-label use so I'm trying 25mg of Pregabalin right now. I'll probably won't take it for long. The pain is indeed gone. But today I have headaches instead (don't know if it's PEM though...or both...).

 

Choline supplementation to help healing the nerve if it got injuried? And other vit B´s if you don´t already take them.

Edit: I guess my suggestions shouldn´t be called "alternative". I guess I´m too affected by mainstream medicine mostly with too little knowledge about vitamins and their effects.

 

Thank you @Helen, I will look into that.

Is choline unproblematic with our ME issues? Or with MCAS or muscle problems?