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.

elizm | @elizm | Sep 9, 2019
In reply to @jakedduck1 "@jimhd Hi Jim, If you ever decide to discontinue your Klonopin do it slow I mean..." + (show)
@jakedduck1

@jimhd
Hi Jim,
If you ever decide to discontinue your Klonopin do it slow I mean really Slllloooooooooooowwww
I took almost the max dose of the junk which is 20mg. I took 18mg for Seizures. It never phased them. It was the most difficult drug to get off of.
I hope it works well for you. Remember, we’re talking slow here and not just slow but very slow, slower than molasses in December, Extremely slow, excruciatingly slow, Imperceptibly slow. I hope you you understand I hope you understand I’m talkining about stopping slowly.
Good luck,
Jake

Jump to this post

@jakedduck1
So glad to see someone posting this caveat. It actually applies to most drugs prescribed for neuropathy, assuming that you can tolerate them in the first place (I cannot). Everyone with whom I've spoken about their experience with the gabanoids, venlafaxine, etc., indicated that getting off of them was a bear, despite their neurologist swearing that they weren't addictive.

REPLY
1 reply
Leonard | @jakedduck1 | Sep 10, 2019
In reply to @elizm "@jakedduck1 So glad to see someone posting this caveat. It actually applies to most drugs prescribed..." + (show)
@elizm

@jakedduck1
So glad to see someone posting this caveat. It actually applies to most drugs prescribed for neuropathy, assuming that you can tolerate them in the first place (I cannot). Everyone with whom I've spoken about their experience with the gabanoids, venlafaxine, etc., indicated that getting off of them was a bear, despite their neurologist swearing that they weren't addictive.

Jump to this post

@elizm
Hi there,
People are definitely different. The hardest time I ever had stopping a drug was Klonopin. Although I didn’t take it for years and years I took a lot. I stopped very slowly so for me my discontinuation of both Klonopin and Neurontin/Gabapentin was uneventful. However a lady here had a horrible time discontinuing Neurontin. So my theory is to go slow. Doctors often advocate 50% cuts but not everyone can handle large cuts.
Jake

REPLY
cim37343 | @cim37343 | Sep 10, 2019
In reply to @wilcy "I have spinal stenosis causing my neuropathy in feet! I also have 3-4 drinks every evening!..." + (show)
@wilcy

I have spinal stenosis causing my neuropathy in feet! I also have 3-4 drinks every evening! Stopped and didn’t help! Only thing that helps are the drinks! Just had another mri ! Waiting on results! Good luck!

Jump to this post

Neurologist told my husband that alcohol is second most common reason to have neuropathy following diabetes. She also said it could be several years after you stop drinking to see any change in Neuropathy. But if you keep drinking it will get worse. Just an FYI.

REPLY
2 replies
Leonard | @jakedduck1 | Sep 10, 2019
In reply to @cim37343 "Neurologist told my husband that alcohol is second most common reason to have neuropathy following diabetes...." + (show)
@cim37343

Neurologist told my husband that alcohol is second most common reason to have neuropathy following diabetes. She also said it could be several years after you stop drinking to see any change in Neuropathy. But if you keep drinking it will get worse. Just an FYI.

Jump to this post

@cim37343
Not to contradict your physician but I have read quite a bit about alcohol and Neuropathy and from what I understand it is unlikely to improve much. I wonder if all I read was accurate???
Thanks for the fri.
Jake

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 10, 2019
In reply to @cim37343 "Neurologist told my husband that alcohol is second most common reason to have neuropathy following diabetes...." + (show)
@cim37343

Neurologist told my husband that alcohol is second most common reason to have neuropathy following diabetes. She also said it could be several years after you stop drinking to see any change in Neuropathy. But if you keep drinking it will get worse. Just an FYI.

Jump to this post

Hi @cim37343, Welcome to Connect. Thank you for sharing your post. I have no medical training or background but have done a lot of research and reading on neuropathy. There are many causes but no real cure for neuropathy. Most treatments target the symptoms not the disease. I'm sure if you have alcoholic neuropathy continuing to drink is not going to help with the symptoms.

Did your husband's neurologist diagnose him with alcoholic neuropathy?

REPLY
2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 10, 2019
In reply to @jakedduck1 "@jimhd Hi Jim, If you ever decide to discontinue your Klonopin do it slow I mean..." + (show)
@jakedduck1

@jimhd
Hi Jim,
If you ever decide to discontinue your Klonopin do it slow I mean really Slllloooooooooooowwww
I took almost the max dose of the junk which is 20mg. I took 18mg for Seizures. It never phased them. It was the most difficult drug to get off of.
I hope it works well for you. Remember, we’re talking slow here and not just slow but very slow, slower than molasses in December, Extremely slow, excruciatingly slow, Imperceptibly slow. I hope you you understand I hope you understand I’m talkining about stopping slowly.
Good luck,
Jake

Jump to this post

@jakedduck1 Jake, I only take 1mg, so when I tried to taper off it I cut the pill into quarters and just moving down to 3/4 of a mg was awful. I decided that it wasn't worth it.

Jim

REPLY
1 reply
cim37343 | @cim37343 | Sep 11, 2019
In reply to @johnbishop "Hi @cim37343, Welcome to Connect. Thank you for sharing your post. I have no medical training..." + (show)
@johnbishop

Hi @cim37343, Welcome to Connect. Thank you for sharing your post. I have no medical training or background but have done a lot of research and reading on neuropathy. There are many causes but no real cure for neuropathy. Most treatments target the symptoms not the disease. I'm sure if you have alcoholic neuropathy continuing to drink is not going to help with the symptoms.

Did your husband's neurologist diagnose him with alcoholic neuropathy?

Jump to this post

She said it was likely caused from alcohol since he wasn’t diabetic and blood tests indicated nothing else.

REPLY
1 reply
Leonard | @jakedduck1 | Sep 11, 2019
In reply to @jimhd "@jakedduck1 Jake, I only take 1mg, so when I tried to taper off it I cut..." + (show)
@jimhd

@jakedduck1 Jake, I only take 1mg, so when I tried to taper off it I cut the pill into quarters and just moving down to 3/4 of a mg was awful. I decided that it wasn't worth it.

Jim

Jump to this post

@jimhd
So how are you doing now?
If you can you might cut them into eighths. If that doesn’t work out there is always the compounding pharmacy. They can reduce it exactly, maybe 5 or 10%. There’s no need to suffer while tapering. It seems most people are in a hurry or don’t understand the definition of slow. No way will I have suffer withdrawal symptoms getting off a drug, I don’t care how long it takes to get off.
Good luck,
Jake

REPLY
Leonard | @jakedduck1 | Sep 11, 2019
In reply to @cim37343 "She said it was likely caused from alcohol since he wasn’t diabetic and blood tests indicated..." + (show)
@cim37343

She said it was likely caused from alcohol since he wasn’t diabetic and blood tests indicated nothing else.

Jump to this post

@cim37343
I guess your doctor isn’t familiar with Idiopathic (Unknown cause) Neuropathy
I’d ask her what Idiopathic Neuropathy is. If you do let me know what she says.
Jake

REPLY
Vradi Fegariou | @vradifegari | Sep 13, 2019

Hello
Have any of you experimented pain along one only side of the body, since the left or right side of your head, face, teeth on to the fingers of foot? I mean, hole lateral pain. It start happening to me since my last acute pain crysis.

Thank you

REPLY
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