Living with Neuropathy - Welcome to the group

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?

@hertz

I have used both gabapentin and Lyrica.. No side effects to speak of but also no relief. I am getting a referral back to the pain MD.. I had to stop my therapy as it was too painful.

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Exact results for me with what you said about. You are doing the right thing. Hope you find the right combination soon that gives you a bit relief.

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@sunny2

Hello @artscaping. The Count on Me Club is a wonderful idea. How fortunate you are to be surrounded with such caring neighbors. Thank you for your response. I have an appointment with the pharmacist at the marijuana dispensary on Friday to discuss other treatment options and the information you provided on what works for you will help me when I go for the consultation. I have only used the spray and it is sprayed under the tongue. I think you are correct that it may be more difficult to monitor how much I am actually getting from the spray. When I talk to the pharmacist I will ask about using a tincture and also inquire about using a topical treatment as well (which I have never tried). I remain hopeful that I will find a combination that will help to ease the discomfort. You are a role model as to what can be achieved.

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@sunny2, Good afternoon and thank you. The proof of the pudding will happen on Friday. Please let me and the rest of the Connect family know what you learned from the cannabis pharmacist. Share the wealth my dear, and for us, real wealth is a pain-free life. May you have some joy today. Chris

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@jakedduck1

@jimhd
Hi Jim
How does the Klonopin help you? Do you have spasms? I took a huge dose and it never helped me.
Just curious.
Jake

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@jakedduck1 I've been taking a low dose of 1mg at bedtime, with the option of taking a second one if needed for anxiety, since 2006. It was originally prescribed for anxiety disorder, but I found that it calms my legs so I don't act out my kicking dreams. My wife doesn't like how many meds I take, but this is one she doesn't complain about.

So, it serves a double purpose.

I tried to taper off it a few years ago but I couldn't sleep, so I think it will be a lifelong medication, which is okay with me.

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@jimhd

@jakedduck1 I've been taking a low dose of 1mg at bedtime, with the option of taking a second one if needed for anxiety, since 2006. It was originally prescribed for anxiety disorder, but I found that it calms my legs so I don't act out my kicking dreams. My wife doesn't like how many meds I take, but this is one she doesn't complain about.

So, it serves a double purpose.

I tried to taper off it a few years ago but I couldn't sleep, so I think it will be a lifelong medication, which is okay with me.

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@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

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Does anyone here have seizures who uses lidocaine Infusion? I was wondering if they would restrict my driving.
Jake

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@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

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@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.

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@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.

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@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

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@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!

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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.

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@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.

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@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

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@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.

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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?

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@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

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@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

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@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?

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

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@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

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@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

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@cim37343

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

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@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

Liked by elizm

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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

Liked by Leonard

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