1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

fiesty76 | @fiesty76 | Sep 8, 2020
In reply to @mayofeb2020 "@jesfactsmon.. I also tske magnesium glycinate, it's a better magnesium. I never have trouble going to..." + (show)
@mayofeb2020

@jesfactsmon.. I also tske magnesium glycinate, it's a better magnesium. I never have trouble going to sleep , it's staying asleep through the night that's the problem. I've tried everything under the sun, or moon, in this case. Turn off TV and all digital devices, read a book before bed, stretch, no caffein at all, going to bed the same time etc. etc. If anyone has any secrets to an undisturbed sleep, please share! BTW, magnesium is also good for blood pressure, many people are magnesium deficient. Unfortunately the way foods are grown and processed nowadays, this mineral is often deminished by the time they reached the market. Pumpkins seeds is a good source too.

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@mayofeb2020, Like you, I can fall asleep easily after reading awhile and going to bed at about the same time each night. I awaken almost like clockwork between 3-3:30am for a bathroom break (regardless of when I drank the last water or tea,etc) and have difficulty getting back to sleep. Now I get up right away, check e-mails, play a simple game or read and after about an hour, can go back to bed for additional sleep. Not suggesting this will work for another but it has certainly been a boon for me. I think getting up and about right away and redirecting my attention to something else versus the fretting I did at first is part of the remedy that helped.

I don't take magnesium but do have high b.p. What would be a good low dose to start of the magnesium? @jesfactsmon or @steeldove, would it be possible to post the article or link to group or in a private message?

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fiesty76 | @fiesty76 | Sep 8, 2020
In reply to @jesfactsmon "@steeldove Thanks again for the magnesium articles. Per these 2 articles, I just ordered some magnesium..." + (show)
@jesfactsmon

@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

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

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1 reply
Hank | @jesfactsmon | Sep 8, 2020
In reply to @fiesty76 "@steeldove and @jesfactsmon , Did some scrolling and found the 2 article links on magnesium. Thank..." + (show)
@fiesty76

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

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@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

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2 replies
bustrbrwn22 | @bustrbrwn22 | Sep 8, 2020
In reply to @avmcbellar "Hi @jakedduck1. I see in your post you state you have tried many anti seizure medications...." + (show)
@avmcbellar

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!

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

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 8, 2020
In reply to @jakedduck1 "@bustrbrwn22 Hello, I'm not taking Lamictal and don't intend to since my Neuropathy has changed. I..." + (show)
@jakedduck1

@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

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My psychiatrist gave it to me as a last resort for manic depression and warned me if a rash developed to call him. I paged him and he said he didn’t think I should be concerned The 2nd time I went to the ER and then that whole nightmare. Didn’t help depression either.

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1 reply
avmcbellar | @avmcbellar | Sep 8, 2020
In reply to @bustrbrwn22 "Wow. I thought I’d tried everything. Never even heard of Keppra. So sorry for your experience" + (show)
@bustrbrwn22

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

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@bustrbrwn22 Thanks, I didn’t know anyone using it either. I read many negative reviews from people who had tried it. Some had good to say but most did not. I am glad I did my homework to get weaned off of it otherwise who knows where I would be now if my doctor had his way. He made NO argument for me to continue this medication since I had never had a seizure. It is important to be ready to argue a point. By having information, you can determine if a doctor is knowledgeable. Always be ready.

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avmcbellar | @avmcbellar | Sep 8, 2020
In reply to @jesfactsmon "@fiesty Glad you found the articles. I thought this one was the most informative of the..." + (show)
@jesfactsmon

@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

Jump to this post

Hi @jesfactsmon. Let me know how magnesium works out for you. Thank you @fiesty76 for the information. Nice to know. I eat all the food sources listed so I am not sure if it will help me. My husband, on the other hand, does not sleep many hours no matter what he does. His diet differs from mine. I had looked it up earlier on Amazon to purchase as well. I was considering trying the mineral for its other benefits. Thanks again.

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sunnyflower | @sunnyflower | Sep 8, 2020
In reply to @avmcbellar "Hi @jakedduck1. I see in your post you state you have tried many anti seizure medications...." + (show)
@avmcbellar

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!

Jump to this post

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 😊

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 8, 2020

Hi @bustrbrwn22, In your previous posts you have mentioned that your pain seems to be related to Sciatica. You also mentioned having already tried cortisone injections, accupuncture, dry needling, physical therapy, myofascial massage, TENS, chiropractor and you were looking for supplements. It might be helpful to know more about your neuropathy diagnosis so that other members can relate and share their experience.

Have you been diagnosed with a specific type of neuropathy? What type of tests and treatments were prescribed?

REPLY
Catcando | @catharbert | Sep 8, 2020
In reply to @sunnyflower "Ditto except the Gabapentin enables me to tolerate my pain most of the time. It numbs..." + (show)
@sunnyflower

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 😊

Jump to this post

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.

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