Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

647 Members
2,812 Posts
0 Online
Brain & Nervous System
/ Epilepsy & Seizures Support Group

Help!!!

vannillabear
vannillabear
K, I haven't been on here in a really long time, but I have questions that my neuro just isn't really explaining. Last night I started having a stabbing pain on the left middle side of my head and it radiates to the back of my eye and down behind my ear. I thought sleep would help, but woke up this morning with the same pain. It comes and goes. Also, I've asked my neuro if epilepsy could be caused or link with thyroid disease (I looked it up, there is a condition with this, but it's rare) and he knew about it, but didn't seem like that was a possibility for me. I have an thyroid autoimmune disease, so I'm also wondering if anyone has experience with this. Also, do any of you have diarrhea too? I've been diagnosed IBS-D, epilepsy, and Hashimotos hypothyroid. I'm wondering if they are all linked together. My husband is really worried about me today, this pain hasn't seemed to ease up at all. I don't know what to do.
deleted_user
deleted_user
The shooting pain in the center of your head sounds to me like a migraine, or something similar. Possibly cluster headaches (Disclaimer; I am not a doctor) I don't know much about thyroid disorders, but IBS along with many of the widely used epilepsy medications are probably acting together to make you miserable.

My advice would be to get as many second opinions as possible. Find a new neurologist, a psychiatrist, an endocrinologist, a gastroenterologist. Get your noggin into an EEG and see as many specialists as possible. The more professionals you have on your side, the greater the chance that they can diagnose/treat your symptoms.

I wish you the best in fighting your symptoms, let me know if there's anything I can tell you.
deleted_user
deleted_user
Unfortunately with Epilepsy I have found that you really do have to be your own doctor. My neuro has acutally told me that he likes patients like me. He joked that I make his job easier so he can do more golfing (he is truly a comedian and I love every moment I spend in his office). You and only you know your body. Epilepsy is different for everyone so even the neuro will not fully understand unless they catch one in the act, and even then they are still a mystery Keep a detailed diary with ANY symptoms you experience.

If you are not happy, or do not think your neuro is listening to you, I would "shop around". I went to 3 who I did not feel listened to me before I found my current doctor. I found him through suggestions from my local Epilepsy foundations. I know it can be tricky to switch around doctors with insurance, but mine is affiliated with our local hospital.

It is very possible that all of this could be a symptom of a larger issue, or perhaps just a domino effect. I wish you all the best of luck that you find a doctor or team of doctors who not only listen to you, but work together.