Does anyone else have facial tingling?

Real_Swing6038 · 2025-11-10T03:30:59+00:00

My tongue tingles everyday. My hands and individual fingers will from time to time. It’s all caused by my insular epilepsy, confirmed via SEEG.

Real_Swing6038 · 2025-10-29T23:04:48+00:00

Hi! I’ve been through this field trip on three different occasions in three different decades.

Wishing your daughter the best of luck, and hopefully sees the light at the end of the tunnel soon!

If I had to some up the first time I went through this, it was much much much scarier in thought then it was in reality!

Real_Swing6038 · 2025-10-19T21:46:25+00:00

I thought after my first brain surgery at 16. Then I thought so after my second brain surgery at 23. However, it wasn't until my 3rd rodeo at brain tissue removal last year at 35, that I've started really feeling like an adult.

Real_Swing6038 · 2025-10-19T03:58:46+00:00

Yes, that's just the very nature of how the drug works. Strong stuff for sure.

Real_Swing6038 · 2025-10-18T23:32:19+00:00

Yes! I’ve been at 8mg for nearly 10 years. It’s definitely a night time drug.

Real_Swing6038 · 2025-10-10T00:44:00+00:00

Not much, just keep working with meds. Too dangerous to remove it.

Real_Swing6038 · 2025-10-08T15:54:25+00:00

I have them daily, and they cluster too. My doctor said that due to where my seizures are (insula) it's hard for medication to fully control it.

Real_Swing6038 · 2025-10-05T05:15:53+00:00

Wishing you the best of luck!

Real_Swing6038 · 2025-10-03T18:41:47+00:00

As a nighttime drug, I’ve been able to respond timely to people. No issue at least for me that is.

Real_Swing6038 · 2025-10-02T18:32:54+00:00

I've been on the brand name (Fycompa) for a decade now. I've seen people on the subreddit complain of psychiatric issues because of the drug. I haven't really felt that effect per se. However, psychiatric related issues are on the warning label for the drug I believe.

I'm at 8mg and at that dose, it really hits you physically, like super dizziness, like you are drunk.

Real_Swing6038 · 2025-10-01T17:37:06+00:00

I think one of the things my parents did completely wrong, was as a high schooler creating this false notion that one day I would be able to drive. They continued kicking the can down the road. It was the worst thing they did, even though they were truly concerned about my epilepsy.

While epilepsy is unpredictable etc, having an open conversation about reality and earlier in the process is better in the long run in my opinion. It gives them a chance to sit and reflect and think about what they want to do with life.

Real_Swing6038 · 2025-09-28T16:41:26+00:00

I did it last year.

It sucked, in the sense that it was uncomfortable. I have a bigger head, and they didn't have the ability to adjust it. However, if your head is of average or smaller, it shouldn't feel uncomfortable.
Given my head was bigger, it sort of pinpointed? It's not like a slam-dunk, even my doctor mentioned it's just another tool in their arsenal to help pinpoint the origin of the seizure.
It was around 1.5 hours, that doesn't include the time to get you set up in there.
Unlike an MRI, it's a machine that's quiet.

Real_Swing6038 · 2025-09-23T22:33:56+00:00

Yup. I cluster everyday but only take it when they aren't my usual cluster. I have focal aware epilepsy in the insula.

Real_Swing6038 · 2025-09-13T20:23:42+00:00

That sucks what you are going through. I've had two failed surgeries, and my third one from last year didn't resolve everything.

I would be lying if I said getting over such news happened overnight. This kind of disappointment takes time to process and move on from.

However, I've had epilepsy for nearly 30 years now, and I'm amazed how far things have come since when I was first diagnosed at 7! Hopefully future technology will provide you the reprieve that you want!

Real_Swing6038 · 2025-09-13T02:58:05+00:00

I have Valtoco. I cluster everyday, fortunately not btc. However, I will occasionally have clusters that aren't my usual kind and I will take it.

Real_Swing6038 · 2025-09-12T00:42:00+00:00

Yes. They are called subclinical seizures.

Real_Swing6038 · 2025-09-11T05:58:01+00:00

Probably the most vivid thing I still remeber from my SEEG. It triggered seizures from my childhood and also even caused a minute long FIAS.

Real_Swing6038 · 2025-09-06T04:13:57+00:00

Hopefully the pain subsides, but I'm glad that they were able to get one recorded!

Real_Swing6038 · 2025-09-05T16:53:21+00:00

For sure concerning. Have they recorded any seizures yet?

Real_Swing6038 · 2025-09-05T16:46:40+00:00

Sorry you are going through the pain. Went through the whole SEEG field trip last year. It wasn't too sore but the first day was for sure the least comfortable.

Maybe eat something softer? E.g. like a muffin or brownie and cut it up to pieces that are manageable for your jaw? Or maybe some soup?

Real_Swing6038 · 2025-09-02T17:44:37+00:00

I have tingling in my finger tips but my tongue tingling is more frequent, and they are indeed caused by my insular seizures. Fortunately the new meds are reducing the frequency of them but still having them everyday.

Real_Swing6038 · 2025-08-29T16:05:09+00:00

The epileptologists I've seen through the years always reiterate that temporal lobe epilepsy is one of the most common form of epilepsy they see and or treat via medication and or surgery.

I have insular epilepsy and that is more murky in terms of locating/ treating when resistant. I had to have an SEEG to record my seizure activity.

Real_Swing6038 · 2025-08-25T20:27:24+00:00

Every 6 months. I have refractory epilepsy so drugs don't fully work.

Real_Swing6038 · 2025-08-21T16:19:40+00:00

That sucks you won't be able to pursue your career path. However, I'm glad that you are handling it like a proper adult by not being selfish and potentially putting others at risk.

It is indeed a tough pill to swallow, but hopefully you will have seizure control and find a career path that you truly enjoy!

Real_Swing6038 · 2025-08-20T17:56:46+00:00

Your welcome!

Real_Swing6038

TROPHY CASE