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Looking to connect with people who have non-diabetic neuropathy

Neuropathy | Last Active: Jul 14 1:33pm | Replies (960)
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@rozmuhr

I have neuropathy on my head which no doctors know how to deal with it . They try to deal with it like a migraine which it is not. I have seen so many doctors one said try everything. I am now on 3 different meds something is starting to work. I can hardly stay awake during the day and I am dizzy. You have to keep going no matter what. Some people have it a lot worse than me. So I try not to complain.

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Replies to "I have neuropathy on my head which no doctors know how to deal with it ...."
cher27 | @cher27 | Apr 14, 2023

I am not familiar with cranial neuropathy, but I found this study on Botox, which I am going to share with my pain doctor next month:
https://www.frontiersin.org/articles/10.3389/fneur.2020.00716/full

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katyburrow | @katyburrow | Apr 16, 2023

I am very new to Mayo and this conversation but I am surprised to read this. I have trigeminal-mandibular neuropathy and occipital neuralgia (interchangeable with neuropathy depending on who is talking). I have been treated for migraines for years and my pain dr made the diagnosis change after a detailed visit last year. I have received several occipital nerve blocks, lasting about 6-10 weeks each and cut back on migraine meds.
My first visit at Mayo-Jacksonville was April 5, specifically for my facial pain, but my appointment was with Dr Fermo, a Neurologist, that specializes in Botox treatment for head neuropathy.
It might be worth a phone call, visit or virtual visit.
Hope you find help.

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