thought it was seizure disorder now neuro says they dont know

[epilepticdollie]

ok so here is whats going on I have tonic clonic seizures but I also have these other things they assumed were some other type of seizure they know are saying they arent seizures and no one can tell me what they are but they happen sometimes 30 times a day and the seizure meds do slow them down and make them weaker but dont stop them where the tonic clonics are controled! They dont show up on the eeg as a seizure:( what happens is my right side of my face inside of my mouth tongue and right arm goes numb and pins and needles tingly my eye twitches like crazy I slur my speach and it only lasts maybe a minute happens every single day and has been happening for at least 5 years if not longer it was less frequent and not nearly as strong it slowly built its way up. the worst part is not knowing and it seems like no one is trying to help me. If you have any ideas maybe you can tell me something :(

[Dr. Kokil Mathur]

Hi
Welcome to the MedHelp forum!
If these are not seizures then basilar migraine, complicated migraine, Parkinson’s disease, transient ischemic attacks, hyperthyroid states, hypoglycemia or low blood sugar, high blood sugar, kidney problems causing brain fog, liver problems causing brain fog, low electrolytes, brain lesions, very high blood pressure, alcohol or drug intoxication, should all be investigated for.  It can be a hemi facial spasm due to a tumor pressing on the facial nerve. Trigeminal neuralgia is another possibility. Please discuss these options with a neurologist. MRI of the brain should be done. Take care!

[Gina04]

So sorry you are going through this.  Have they done a CT or an MRI on you to see if maybe these are TIAs or something?  I actually have had something similar as far as the numbing stuff goes.  It doesn't happen as often as yours though.  I figured it was probably related to my seizure disorder but since being diagnosed with Fibromyalgia I have wondered if it is that instead.

I had a few febrile convulsions as an infant when I was teething.  I then started having absence seizures and a couple grand mals beginning at age 10 (when puberty started).  The seizures continued for the next 20 years.  Medication made me a zombie and I would still have seizures.  Thus, most of the time I was not on medication.  I finally found a surgery that sounded like it might help me.  I pushed my doctors to see if I was a candidate and I was.  I had the surgery in 2004.  During the testing, they discovered that my seizures were starting in an area of scar tissue in my brain.  They believe that this scar tissue was probably a result of the febrile convulsions.  They were able to remove the scar tissue and now, instead of having absence or grand mal seizures, my seizures manifest themselves as headaches.  It is still no fun but is easier to deal with than before the surgery.

With what you said you have been through, I kind of wonder if there is some scar tissue or something that is causing some or all of your problems.  It may be something to check into.

[epilepticdollie]

no one knows anywhere :(  I don't know if this helps any but it got worse while i was pregnant with my daughter and I dont smoke drink caffine or alchol or do drugs I was a premie my parents did drugs i had a lot of high fevers and they never took me to they hospital or doctor for treatment no matter how sick I got........ thats sort of where we assume the seizures may have originated from also busted my head open a couple good times as a kid.