My Dr. Recently put me on Gabapentin. In short, my head is a neurological nightmare of odd sensations and a sort of "sick" or "nauseous" component to it...
I guess I was wondering if anyone ever had success with it helping odd nerve inflammation.
I know it is mostly used for nerve pain, but do you think it could help other nerve sensations?
Right now, I am fighting a few side effects, that I am hoping go away.
I have had this for so long that I am more than ready to slap a Band-Aid on this stuff if it would even HELP!! UUUGH!!!
I am getting so treatment weary! Posted by SickSam (Member # 45330) on :
Absolutely. When I first started neurontin it completely masked my nerve sensations. I was scared to try it but it was fantastic. I still take it, but my nerve stuff has progressed to the point that it doesn't really help anymore, but it does help with sleep a little.
Posted by madisongrrl (Member # 48682) on :
I have full body small fiber neuropathy and take 2400 mg of gabapentin a day. It's not going to help inflammation, but it will help mask the nerve pain so you can sleep better and function in life.
Posted by Lymetoo (Member # 743) on :
I used to take it. Do your homework because it can cause many side effects which are not tolerable for some people. It even affects the heart.
I know someone on high dosages who began getting myoclonus and she has even collapsed a few times.... so be careful.
I would take the lowest dosage you can that will help your symptoms.
Posted by foxy loxy (Member # 47053) on :
Good advice Lymetoo! I am kinda scared of it. I don't like brain chemicals...
SickSam, was your nerve sensations painful? Mine are not painful, that is why I am afraid gabapentin will not work for me.
The sensations are just frightening, odd and deep inside my head.
Posted by Jordana (Member # 45305) on :
I've been thinking about asking for either this or Lyrica. I don't have a lot of pain but certainly plenty of other nerve issues. Wondering if it works on those.
Posted by SickSam (Member # 45330) on :
I actually have a bottle of Lyrica that was prescribed a long time ago. It sounds much scarier than Gabapentin. A lot more expensive too. So I never took it.
Foxy, mine are painful, but I have weird stuff in my head too that isn't painful. Then I have another sensation that feels like my brain is on fire. It doesn't help the brain fire any, but it might've helped the other brain feeling. I'm not really sure, it's such an odd feeling it's kinda hard to describe and kinda hard to tell if Gabapentin helped it.
I'm extremely sensitive to Gabapentin. I only take 300mg a day. If I take 600mg I can't walk straight, but this is unusual. People usually take tons of this stuff.
Jordana, I do think it used to help my internal vibrations. You have those too don't you? It might help those.
Overall, it really has become one of my favorite medicines.
Oh, almost forgot, it makes me happy too. Relaxed. Not in a scary, addictive, benzo kinda way. (I've been on a benzo, it was addictive). Gabapentin relaxes me in a totally benign kinda way. It was excellent for sleep when I first started it.
Posted by Jordana (Member # 45305) on :
Gah, I have vibrations, thrums, twitches, popcorn, sparks, whooshes, whirls, tips, bobs, rocks and waves. If anything could tone these down just a little bit I might be able to be functional at some point.
Not crazy about lots of pharma but it would be nice to stay out of the ER.
Posted by dbpei (Member # 33574) on :
My neurologist and oral surgeon both wanted me to try gabapentin due to all of my 'cranial neuropathies', which is the medical term, I think, for what we are all experiencing.
I have also had some pre-seizure activity that showed up in my EEG, so gabapentin would help this as well.
I am giving medical marijuana a try instead. My neurologist actually thinks this is a good idea. He says he has seen some lyme patients respond well to it.
It is hard to know if it is improving my symptoms yet, but there is a very subtle change in the right direction. MM has been shown to decrease or eliminate seizure activity and it is also good for calming the nervous system, if the right strain is used.
MM is legal in my state. So I think it is a good alternative for me without the side effects. Jury is still out though.
Posted by lpkayak (Member # 5230) on :
Ditto what sick Sam and Lymetoo said
I am prescribed 600 at bed for pain and sleep and 300 during day for pain. I always take 300 at night and it helps a lot
I take the rest as needed but rarely. I don't drive if I've had more than 300
I take all for tri germinal neuralgia
It usually stops it. Once it didn't. And e r gave me something stronger
I couldn't walk with that
Posted by dbpei (Member # 33574) on :
lpkayak, what were your symptoms for the trigeminal neuralgia that were helped by gabapentin? Is it more for pain than odd sensations?
When you say, you 'couldn't walk with that', are you saying you couldn't walk due to the side effects of the stronger meds?
Posted by foxy loxy (Member # 47053) on :
dbpei,
Gabapentin can give you the side effect of not being able to walk straight. For me it kinda gave me a "woozy" feeling in the head and I had to make an effort to walk straight.
I am only into my third day on it. Yesterday, I 300 mg separately further a part and had no trouble walking.
Hopefully, my body is adjusting. So far, it seems to have calmed my overexcited brain down a bit, and I don't feel as anxious or get adrenaline when I hear louder noises quite so much! (awful)
I feel a bit dopey on it. I am hoping this disappears as I adjust too.
So far it hasn't done much for the bizzare head sensations, but it could almost feel like its working on it???
Probably wishful thinking..... Please Lord?
SickSam, sorry you too have odd sensations in the head. I haven't met many that do!
I remember dbpei had some too. Do you really think it is cranial neuropathy? I have never had a Dr. give me any terms, but it would be nice to know for research.
Posted by terv (Member # 29410) on :
I take what could be the max dose per day (2700) and it helps with my nerve pain but doesn't eliminate it. Lyrica is much better for me but is really expensive and I cant afford it right now. I may have had the side effects you describe but they disappeared as I started to tolerate it.
My mom still has a lot itching from a case of the shingles she got in June. Regular doctor gave her some topical which didn't touch it. Lyme doctor gave her gaba which provided her much more relief.
Posted by lightfoot (Member # 2536) on :
I was on it for a long time. I went through withdrawal when I went off of it. I prefer to use amino acids or other supplements.
Posted by foxy loxy (Member # 47053) on :
Thanks Terv!
I am not happy at all about the thought of withdrawal, lightfoot! GRRR
At this point though, I would do anything to get head relief. What kind of amino acids and supplements do you take?
I have tried L-theanine and Taurine with a little help...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by terv: I take what could be the max dose per day (2700) and it helps with my nerve pain but doesn't eliminate it. Lyrica is much better for me but is really expensive and I cant afford it right now. I may have had the side effects you describe but they disappeared as I started to tolerate it.
Max dose for gabapentin is 3600 mg. But that is based on efficacy (not safety). I know people who have severe full body small fiber neuropathy and the pain managment doctor will take them up to 4500 mg per day.
Posted by foxy loxy (Member # 47053) on :
Whoa! I am working my way up to 900 mg and already I feel ... hard to describe?? drugged? sedated?
I already struggle with wanting to sleep all the time. I can't imagine being able to function on that high of a dose!
It is definitely touching whatever my problem is. I am just not certain if it will take away all the ODD, ODD, ODD,(that enough odds?) sensations I get... Man I hope!
Posted by madisongrrl (Member # 48682) on :
quote:Originally posted by foxy loxy: Whoa! I am working my way up to 900 mg and already I feel ... hard to describe?? drugged? sedated?
I already struggle with wanting to sleep all the time. I can't imagine being able to function on that high of a dose!
It is definitely touching whatever my problem is. I am just not certain if it will take away all the ODD, ODD, ODD,(that enough odds?) sensations I get... Man I hope!
I was like that at the beginning. It took me a few months to adjust. Now it really doesn't impact me at all.
Posted by Moons (Member # 48609) on :
I've been on Gab for 2+ years. It has helped me with miscellaneous nerve pain.
I've gone up to 900 mg daily from 300.
I've been unable to walk for 10 years.
Posted by foxy loxy (Member # 47053) on :
Thanks madisongrrl and Moons,
That is encouraging to hear. I think the side effects seem to be getting better already!
It is a little to soon to tell if it is helping my head yet though...
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