posted
I have repeatedly tried Neurontin in low doses (between 100 and 300 mg per day). It seems that any time I get above 100 mg a day the Peripheral Neuropathy and parasthesia with twitching that I am trying to treat gets worse. My new LLMD told me to take 100 mg of Neurontin at night for one week, then titer up to 100 mg bid and add 25 mg of Lamictal at night. Then continue to titer up (can't remember how high right now, but I have it written down). Anyway, the same thing is happening as before when I've tried only Neurontin: worse tingling, numbness, and twitching muscles in my legs. I am puzzled. Neurontin is supposed to make this better, not worse. I cannot take Lyrica because it gave me a rash and made my ankles swell. I wish I could because the Lyrica worked really well for the pain
Posts: 52 | From Central VA | Registered: Jun 2011
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posted
i took neurontin for a week it made me twitch worse and made neuro wayyyyy worse. i also have a lot of neuro symptoms from lyme to begin with. i think that stuff helps "healthy" people, not meant for all lymies.
Posts: 109 | From PA | Registered: Feb 2012
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posted
I have tried Neurontin on several occasions for my peripheral neuropathy and it just doesn't seem to work at all. I always begin at 100mg and try to go up. My sister has MS and takes it for that and it has been a blessing for her. She has told me several times that it takes a while for it to get into your system at a high dose to work. So basically I think you have to stay at it for at least a month at a dose that is going to work.
I just haven't done that yet because I get too impatient. Plus it makes me feel strange....
Posts: 343 | From North Carolina | Registered: Oct 2008
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I take it occasionally for Occipital Neuralgia type symptoms and find it does work for me taking it only when needed.
I did start on 100 mg. and worked up to 300 mg.s but got too dopey - even on that dose.
But, I find taking 100-200 mg.s PRN does help my nerve pain - along with a muscle relaxer when needed.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Magnesium will do the same thing as Lyrica, without the negative side-effects.
Magnesium also may help with the twitching.
I personally think Neurontin for nerve pain is a scam...but this is only my opinion.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- axseptants, I can't read your post but will reply to the heading as Neuroton was terrible in my case.
I just could not tolerate even tiny amounts - tried many times over the years. For me, in increase vertigo & dizziness, muscle weakness,and sent my emotions to the dumpster.
Some do fine with it though.
Still, as Razzle says, MAGNESIUM will do the same thing but better without the side effects. Fish oil, too.
Cordydalis is an herb that helps with pain relief and sleep. More detail about that here: ---------------
posted
What really helped my neuropathy was a combination of two things. A product called natural calm (magnesium supplement) which is a powder. 1-3 tsp per day. Also acupuncture. Symptoms aren't completely gone but are greatly diminished.
Posts: 22 | From California | Registered: Oct 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I found this just now in a search.
Has anyone else had this specific reaction to neurontin, i.e., worse neuropathy??
I have been having horrible, increasing peripheral neuropathy subsequent to rupturing all 3 hamstring tendons with a bad fall a year ago with a much delayed and long surgery.
I have been struggling to figure out if it is from 1/ my underlying peripheral neuropathy, 2/ from the injuries and surgery, 3/ from tinidazole and flagyl (alternating) that I took during this time, forgetting about the possibility of neuropathy from it----arghh!
Just last week I discovered the possibility that neurontin can make it worse!!! Argggh! I have been taking neurontin, only at night, for pain, migraine prevention, and sleep for a while now. It does help quite a bit.
But my neuropathy is getting horribly worse!!! In spite of going off all flagyl & tinidazole at the beginning of December. It helps a lot with the pain, which is what is so bad.
But now I have to wonder if the neurontin is making/has made it worse. If I don't have that for pain . . . I don't know what to do. There really isn't much that helps with the bad, escalating pain.
As it is, I am afraid that it has already become CRPS/RSD, which is terrifying. It's really bad. I've already been doing magnesium, B vitamins, vitamin C, etc. I probably should make this a separate thread.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Up!!! Maybe I should make a new post, so this doesn't get lost.
Actually, I'm also asking about CRPS/RSD, as I've rapidly developed a horrible case of it. I'm really freaked out!
Posts: 3771 | From around | Registered: Mar 2008
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posted
So sorry to hear, Rumigirl. Sounds like you are in a lot of pain. I have a friend who has RSD .. so awful.
I know flagyl can really damage the nerves. Happened to me. My recovery from that is basically the ReMag and ReLyte I take several times a day.
How much neurontin are you taking?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I am taking neurontin only at night, anywhere from 300 mg to 500 mg (over a number of hours), depending on the pain/migraines/insomnia. I have it in 100 mg caps, so I can titrate it.
At this point, I doubt that it is the neurontin making it worse, but who knows??
I can't believe that I forgot about that with the tini and flagyl for so long!!! Mostly it was tinidazole, but some flagyl. Both in the same class, of course.
I also have no idea if they were the cause, or partial cause, either, or if it was mainly the PN/CDIP and injuries/surgery.
The surgeon had to tack the tendons back on the ischium (sitz bone) with 3 metal anchors, so when I sit, I sit directly on the sitz bone with the metal anchors!!
Every single time I saw the surgeon, he commented on the fact that I "don't have much back there" to cushion it (I'm thin). But even inadvertently gaining weight this winter, due to pain, illness, and horrible winter, didn't help with this.
Posts: 3771 | From around | Registered: Mar 2008
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