PN giving me terrible tingling and electrical currents head to toe st

Posted by silvern12 @silvern12, Jul 18, 2023

I have been getting terrible tingling and electrical feeling from my face to my toes at night I am getting no sleep Ut had gone away for awhile but has gotten bad Any suggestions My face feels like it’s tingling all over I don’t want to go on the strong meds

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@johnbishop

Hi @numby25, I see that you are a fairly new member to Connect and I would like to welcome you and thank you for sharing some sound advice which I think might help with a lot of different health conditions. If you haven't already seen the Foundation for Peripheral Neuropathy site, it also has a lot of helpful information on living well with neuropathy - https://www.foundationforpn.org/living-well/.

Have you been diagnosed with neuropathy? What symptoms do you have?

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Hi John
Thank you for sharing the site.
Yes, I was diagnosed about 3 1/2 years ago. My symptoms are pricky pain and numbness on my feet and hands.

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Medications are the only thing that has helped me. Talk to your neurologist about medications available with fewer side effects. There are a few medications you can try and see which on works best for you.

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@numby25

Medications are the only thing that has helped me. Talk to your neurologist about medications available with fewer side effects. There are a few medications you can try and see which on works best for you.

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Has anyone tried frankincense and myrrh topical oil? I thought I saw it mentioned on the group, and now my Dr. recommended it. when I looked it up on the interned, it said there was no evidence it did anything for pain topically .

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Hello
I tried it a couple of years ago. It did nothing for me.

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@tgcorin

Has anyone tried frankincense and myrrh topical oil? I thought I saw it mentioned on the group, and now my Dr. recommended it. when I looked it up on the interned, it said there was no evidence it did anything for pain topically .

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I did 7 years ago, and at the time it didn’t help me. It had a good feeling, but didn’t help my deeper nerve pain from my PN. The only thing that has helped me is Gabapentin, and I’m fortunate it doesn’t cause me drowsiness or any other side effects. It took a few months to get to the right dose and my pain has been consistently tolerable for 7 years if I don’t miss a dose. It also helped me with intolerable cold (and heat) feelings I’d get in my extremities. But many folks here haven’t had the same success with Gabapentin. There’s a lot of trial and error, I hope you find what works for you very soon.

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@dbeshears1

I did 7 years ago, and at the time it didn’t help me. It had a good feeling, but didn’t help my deeper nerve pain from my PN. The only thing that has helped me is Gabapentin, and I’m fortunate it doesn’t cause me drowsiness or any other side effects. It took a few months to get to the right dose and my pain has been consistently tolerable for 7 years if I don’t miss a dose. It also helped me with intolerable cold (and heat) feelings I’d get in my extremities. But many folks here haven’t had the same success with Gabapentin. There’s a lot of trial and error, I hope you find what works for you very soon.

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Hi Debbie - what dosage of gabapentin does your doctor have you on? I'm doing 100 mg at night, and on bad nights I grab another 100 mg for a total of 200 mg on bad nights. The doctor says I can take 200 mg at night and 100 mg in the morning. I'm worried I'll be snowed!

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@robindancer5678

Hi Debbie - what dosage of gabapentin does your doctor have you on? I'm doing 100 mg at night, and on bad nights I grab another 100 mg for a total of 200 mg on bad nights. The doctor says I can take 200 mg at night and 100 mg in the morning. I'm worried I'll be snowed!

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Well... I take 800 3x a day. I recall first starting out at 100mg and going up gradually over a few months. For the first 6 months of my PN, I was confined to a wheelchair and doing so much PT that I probably wouldn't have had a clue as to what may have caused any fatigue. As I got back on my feet and continued PT, I still get body/muscle fatigue, but not "sleepy/dopey" fatigue. We found the point that worked to make the pain, freezing, and ice-cold sensations tolerable, and I am very happy to be at the level I am now compared to how bad it was without Gabapentin. For me it's important to stay evenly dosed. If I miss an 8 hour dosage, I usually know it and it might take a couple of cycles for me to get evenly maintained again. But our PN's and therapies respond differently!

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@robindancer5678

Hi Debbie - what dosage of gabapentin does your doctor have you on? I'm doing 100 mg at night, and on bad nights I grab another 100 mg for a total of 200 mg on bad nights. The doctor says I can take 200 mg at night and 100 mg in the morning. I'm worried I'll be snowed!

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Hi Robin,

I read: The pharmacokinetics of gabapentin require regular dosing, it will not work if dosed “as needed.”
I was on 600mg three time a day. Switched to Lyrica which was not as good for me. Some relief but worse side effects. I’m switching back but nothing “drug wise” works very well for me.

Best of luck.

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Sorry, but I cant take gabapentin, makes me dizzy. I have a lot of other oral meds to take and many of them also cause dizziness. Trying to go with something topical for relief but nothing helps for any length of time. Many contain lidocaine which is a short fix, then the fire comes back.
I thought frankincense might help, but I also read there is no evidence that it does.

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@tgcorin

Has anyone tried frankincense and myrrh topical oil? I thought I saw it mentioned on the group, and now my Dr. recommended it. when I looked it up on the interned, it said there was no evidence it did anything for pain topically .

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@tgcorin - I did try it, among 25 other things in the past 8 years and it did nothing except take a few dollars from the wallet....quite similar to the other 25 things, a dent in the wallet. But, we all have to try different things just thinking and hoping, hey perhaps this will work. In my opinion, you just have to try it and see....never know! What works for one could help some other person with PN. Since many of us don't know the cause, it is hard to figure out the cure. Ed

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