10-24-2006, 09:59 PM
I think you have helped me in a way nobody, especially doctors, have never been able to help me. I read about your form of seizures that form in the Parietal Lobe. Honestly I'm such a dingbat, I just thought you were misspelling Partial Lobe...what a dummy. So in some of your descriptions, my probs sounded like your seizures. Today I took time and read up on them and it really sounds like my problem. My neurologist and ENT both have treated my vertigo and balance problems as an inner ear problem. Everything I read today points to the Parietal Lobe as being the source of my problem. Now I just need a neurologist that is that informed.
10-25-2006, 12:20 AM
You're welcome. What I have found, is that in most cases this is so 'unknown' they call it a syndrome making finding any information on it very complicated since I googled "Parietal Lobe Epilepsy".
This read HERE (http://www.e-epilepsy.org.uk/pages/articles/show_article.cfm?id=88) is the best I have found so far. The parietal lobe can basically 'misfire' to random lobes which will cause a huge variety of seizure types.
I kept reading and reading even on major epilepsy websites that seizures didn't hurt, so I thought I was crazy. It wasn't until my EEG showed this activity that I started to dig more into information regarding the parietal and occipital lobes that I realized I certainly wasn't crazy.
While it kind of makes me giggle when I type it, it caused this 'shock' to my butt. Ok, it's terribly funny to type that, but at the time I got up and looked for something, assuming -something- just shocked my rear end. I've also dropped my pants in the house because I thought a small area of my thigh was on fire.
The random sensations are, well, random! But in a way, I felt comfort knowing that I wasn't crazy, but a bit less at ease to see the treatment options (or lack of). I really would like to push for main Epilepsy websites to let people know that while it is rare, seizures do exist that DO hurt. People need to know this, and I bet if they did. The 1.4% of those diagnosed with epilepsy who have this type would end up raising to a higher number. I can only assume there are others like me who didn't even know that lobe existed.
My former Neurologist has not had a single case of one patient with this type until me. She is 62 years old and pretty much clueless with this type of seizure activity. That's not very comforting.
I'm glad you found the information, and I hope others do, too. It is something so hidden that could be treated in many cases. Raising my Keppra to 3,000 MG's per day seems to have kept the symptoms down some. This happens 1-3 times today instead of 5-15 times. The 'big one' as I call it, comes once a month (which I believe to be horomone related, but thats my self dx) and lasts around an hour total. That has also lessoned a bit, it lasts around 30 minutes and doesn't hurt as bad.
I hope you find answers and I can really relate to anyone who goes through this. It is an awful experience and really opened my eyes. When I had the first large episode (ask Chemar), I literally freaked out. I cried for two days because I thought when I had that seizure I was dying. I was blind and paralyzed all while being 'shocked' for around 30 minutes straight.
I would not wish that feeling on anyone, not even my worst enemy.
Please, please - look into this. Anyone who suspects any abnormal seizures or questions sensations their doctors 'blow off' - this does not get better without some form of treatment. It can spread, and mine did before it was noticed.
I wish you all of the luck in the world!
Edit: HERE (http://www.emedicine.com/NEURO/topic653.htm) is another link!
10-25-2006, 03:46 PM
i'll second the thanks to ellie. i know i don't really "know" you, but i admire your strength and courage through all of this.
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