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Neuropathy? How Does It Feel For Anyone Else?
A MyEpilepsyTeam Member asked a question 💭

i get weird feelings in my mouth, feels weird chewing, tongue feels weird like all bumpy? dry?? feet feel like i’ve had them in snow?? burning bad?? legs feel bent and weird???? i have had 6 seizures in the last 24hours but doctors think i’ve developed neuropathy

posted October 7, 2023 (edited)
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A MyEpilepsyTeam Member

I’ve had neuropathy for 20+years due to herniated discs and the pain can get intense. If your pain level gets too high it the stress related could cause a seizure. I was prescribed gabapentin which treats the nerve damage in my legs and feet due to neuropathy and it also treats seizures along with the carbamazepine for my seizure control. Let your doctor know about the pain from your neuropathy, best wishes and feel better.

posted October 8, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member @A MyEpilepsyTeam Member so i was in alot of pain last night my mom didn’t know if she should take me to the er cause they usually can’t help me. she called an on call doctor at the hospital and he specifically said it was neuropathy. no he did not be specific with what type? but he said that it is neuropathy probably from the 6 seizures i had, and that i needed to schedule an appointment with my neurologist which i have one on the 12th, to get prescribed anything to help. i had 6 seizures within 24 hours two days ago and ever since then i have been having a lot of issues cause of those seizures, so they believe it is neuropathy and that my doctor will explain and talk to me about it?:/ im not sure but i described it all to him and he said that is neuropathy

posted October 7, 2023
A MyEpilepsyTeam Member

Neuropathy just means: A disease or abnormality of the nervous system. there is different type of neuropathy (Peripheral Neuropathy, Autonomic Neuropathy, Proximal Neuropathy, Focal Neuropathy). the treatments varys but some include: diet, no alcohol, anti-inflammatory meds, resting, wearing splints, going to physical therapy, and surgery.

posted October 7, 2023
A MyEpilepsyTeam Member

Hi. Neuropathy which are referring may be Peripheral neuropathy. PN can be caused my hundreds of causes. That is what a Scientist stated in his presentation and a PN Conference I went to over a decade ago on the suggestion o my old Neurologist.

Peripheral nerves are from your spine to all the organs from skin, to internal organs, basically everywhere except your spinal cord and brain. If you have damage from a disease, injury or toxic insult, you can get PN. Nerves can heal when injured. But when they do not heal, they die. PN is not symptom. Pain receptors are varied and numerous. For example, I have PN and I stopped feeling cold on my feet and lower legs decades ago. I did not realize that because I was in warm California climate. I only realized that after having a Pin Prick Test by my old Neurologist. I had been complaining on my hands and fingers tingling for decades. I did not know I had lost sensations. Sensory receptors are numerous from feeling air, wind, water, pressure, temperature, heat and cold pain, etc. So, if you have PN, it can be anywhere in your body. If it is transient, it is not PN. PN is persistent but symptoms appear with the stimulus that triggers the sensory response receptors. For instance, my back, getting out of a warm shower, I immediately get cold pain. So, I have to heat the bathroom with a small portable heater so I do not have pain getting out of the shower.

https://www.foundationforpn.org/

posted November 10, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member everyone is different when it comes to seizures. i have/had kid seizures and every 1-4 hours i have 1 seizure (aura seizures to partial to complex to tonic-clinic seizures). didn't have that neuropathy thing. but i did not have the side effects after the seizures.
i think your main dr didn't know all the symptoms of said neuropathy, so thay pointed you to the dr that can. i can't help you any farther cause i did not have that neuropathy. so i am limited on what i have read online.
you will get this thig fix... just need to get a trusted dr, nuero, both.

posted October 7, 2023

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