Living with Neuropathy - Welcome to the group

@steeldove
Thanks again for the magnesium articles. Per these 2 articles, I just ordered some magnesium glycinate for my wife as it sounds like it might be better for her for sleep. VERY kind of you to pass them along. Hank

@steeldove and @jesfactsmon , Did some scrolling and found the 2 article links on magnesium. Thank you for sharing!!

Hi @jakedduck1. I see in your post you state you have tried many anti seizure medications. I just wanted to add I was prescribed only one while I was in the ICU following my AVM(ArterioVenous Malformation). Upon discharge from the hospital, I was given a prescription to continue the same medication, Keppra. I don’t normally take medications but figured the doctor would know best. After all I had no decision making with this medication whatsoever. I was in a coma. Needless to say, I hated the effects of the medication and cringed every time I had to take a dose. I did not know how much the medication affected my body, was it me or the drug? It had awful side effects. The more I read, the more I wanted out. So on my follow up visit with my neurologist I convinced him to discontinue it. He told me “ I was right” so I was tapered off and within a few weeks done with it. I never had a seizure. It was a precautionary measure. For me, what an awful feeling taking anti seizure medications. One has to look for the benefits vs the risks in taking it. To answer your question, I saw no benefits with Keppra while I was taking it. I have been drug free for almost 4 years now and have come a long way. I started with a wheel chair because I could not ambulate at all. Wish you well in finding answers!

@bustrbrwn22
Hello,
I'm not taking Lamictal and don't intend to since my Neuropathy has changed. I only have numbness now.
I'm familiar with Lamictal in the treatment of Epilepsy but was curious about its effectiveness in Neuropathy and how many here may have tried it. Epilepsy has been my nemesis for almost 54 years with thousands of seizures.
Were you diagnosed with Steven Johnson syndrome? Didn’t your physician tell you to discontinue the Lamictal when you informed s/he of your rash. Do you have neuropathy and if so are you using any medication to help treat it and if so what type and is it beneficial?
Thank you for your reply.
Take care,
Jake

Wow. I thought I’d tried everything. Never even heard of Keppra. So sorry for your experience

@fiesty
Glad you found the articles. I thought this one was the most informative of the two: https://www.psychologytoday.com/us/blog/sleep-newzzz/201805/what-you-need-know-about-magnesium-and-your-sleep

I just got the mag. glycinate from Amazon today and I plan to take 200mg a little before bedtime after taking 160 mg of mag. citrate in the morning. If I experience any issues, which I do not expect, I will dial back to 100 mg at night and see how that does. Best, Hank

Hi @jakedduck1. I see in your post you state you have tried many anti seizure medications. I just wanted to add I was prescribed only one while I was in the ICU following my AVM(ArterioVenous Malformation). Upon discharge from the hospital, I was given a prescription to continue the same medication, Keppra. I don’t normally take medications but figured the doctor would know best. After all I had no decision making with this medication whatsoever. I was in a coma. Needless to say, I hated the effects of the medication and cringed every time I had to take a dose. I did not know how much the medication affected my body, was it me or the drug? It had awful side effects. The more I read, the more I wanted out. So on my follow up visit with my neurologist I convinced him to discontinue it. He told me “ I was right” so I was tapered off and within a few weeks done with it. I never had a seizure. It was a precautionary measure. For me, what an awful feeling taking anti seizure medications. One has to look for the benefits vs the risks in taking it. To answer your question, I saw no benefits with Keppra while I was taking it. I have been drug free for almost 4 years now and have come a long way. I started with a wheel chair because I could not ambulate at all. Wish you well in finding answers!

Ditto except the Gabapentin enables me to tolerate my pain most of the time. It numbs my brain to enough of it to have limited function but the side-effects are horrible!! I know this is a repeat (I'm famous for that) but know there are new kids or others in the group who may not have seen them so here goes: my senses are dulked, balance worsened, memory, focus, concentration and tracking compromised, double vision off and on throughout the day, a muted soft grayish and white pattern in
my vision field at all times, sense of time altered, etc. And, this is onky taking 300mg. AM, 300mg. afternoons and 200mg.at bedtime.

I had these side-effects when I was only taking two and three hundred mg.s although not as strong.

I still have to use 5‰ Lidocaine patches on my back and 4% Lido solution on my knees.

Yup, everything in medicine is a benefit /risk ratio.

I am grateful for the great care that I have received over the years. A lot of my doctors are as frustrated as myself bc they are so limited in what they can do for their patients and because the medications can be so toxic.

Thanks everyone for you support and kindness. It means so much to me! Warmest regards, Sunnyflower 😊

Hi Sunnyflower. Just today I talked to my pain specialist about gabapentin. Not only does it have the side effects you mention but I have heard that it can cause osteoporosis. I already have severe osteoporosis so this concerns me. The pain specialist suggested a trial of Lyrica (pregabalin). I'm going to try it for 2 weeks. Have you tried Lyrica?
Thanks to everyone who contributes to this forum.