Looking for Answers: Hi everyone! I'm new... - Epilepsy Action

Epilepsy Action

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Looking for Answers


Hi everyone! I'm new to this group and I have a very interesting medical history. I was wondering if anyone possibly shared my story. So here goes...I got epilepsy out of nowhere when I was 19 (of course I had just bought my first car). Doctors could not find a medicine that my body would not reject and cause more seizures. I was one of the first to try Keppra and it worked, at least to a point. Years later still with the same neurologist that put me on Keppra, I developed a (believed to be) autoimmune disease called Stiff Person Syndrome. This disease causes severe muscle spasms and rigidity. The muscle spasms can be so strong that they break bones or rupture ligaments and tendons. This all appeared when I was 35 (I had been having symptoms for at least 5 years prior) and my handicapped brother was diagnosed with glioblastoma multiform brain cancer and would surely die in which he did. The stress is what really brought out my symptoms of SPS. With all this said my doctor also found evidence in a spinal tap of limbic encephalitis. Which is believed to be autoimmune. In SPS it is showed that 15% have drug-resistant epilepsy and remember that SPS is 1 in a million! I also have issues with certain music. Some music will cause me to have seizures which I proved to doctors during a constant EEG. Is there anyone that can relate to any of these things I have written? I would truly appreciate any input! Thank you so much!

3 Replies

Good Morning,

I have been on so many medications over the past 30 years since I was diagnosed with epilepsy, Kepra included. Convulex was also used, together with Lamictin twice daily. Unfortunately Convulex was not available in the UK, & I was put on Epilim. After getting very ill, ending up in high-care after almost 10 years abroad, I came back to South Africa in 2009. I had to learn to walk, write & do other normal things again from the start. Today I'm living with both my retired parents & 2 sons - Jack Russells, of which one also has epilepsy. In case I have a seizure they don't allow anybody near me, not even my parents. As small as they are they somehow turn me on my side, and start howling. As soon as they see movement again, they start & continue to lick my cheeks.

That is what I call real doggie love & security.

Hidden in reply to BoytjieD

I thought your comment of the doggie love was beautiful, as so true. Sounds like you have been through a great deal, so your tenacity is impressive. I am glad you have such a loving support team watching over you...

I have had Epilepsy all of my life and the fits have always been the same but about a month ago i was at home i knew a seizure was coming and then i had this pain in the back of my head, i was vomiting too, the Dr told my sister to call an ambulance and i was taken to hospital (Northwick Park) I dont remember much after that, it wasnt a usual fit, while i was in hospital i thought there had been a nucleur war and the nurses looking after me were not from this planet, another episode i thought i was dead and the other side of the ward were alive and god was giving me a second chance, another episode i thought i was there to be executed for all the bad things i had done in my life which isnt much really, dont think i am a weirdo this happenned to me i wanted to get out at one stage trying to get through a window, i was very rude to the nurses at one stage which i regret and tears were pouring out of my eyes like a fountain, this kind of thing has never happenned before it may have cured me i dont know i can only wait and see but it has made me think differently about life and to treat people differently with more respect also i actually think now there is a god up their after all, he has given me a second chance, i was punished basically (KEPPRA IS CRAP)

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