Well, I am still not well but there is some hope. I went to the neurologist for an EEG and there was some "suspicious" activity. The doctor suggested a 24 hour EEG to see if he would discover anything further. In the meantime I am on an anti-seizure drug Keppra.
I have done more research and think my symptoms are indicative of partial simple seizures.
I even read about a disorder called abodominal epilepsy that might just be it. Whoever thought I would hope I have epilepsy? But at least there is medication that controls it and people would not think it is just psychosymatic.
Wednesday, January 9, 2008
Seizure Disorder
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4 comments:
Dear Beth,
I stumbled across your blog and have been reading your entries this afternoon with fascination because I was diagnosed with vasovagal syncope on Good Friday. Even though an internist friend of mine says he's seen this condition in hundreds of patients--mainly women, younger (age 30-60), thin and in otherwise great shape--I had never heard of it before and I've been in health care for 18 years.
Thank you for sharing your experiences as it is such a mysterious and bewildering condition. I had three "episodes," the name everyone gave them, before the tilt table test confirmed the diagnosis. The last one ended up with me hitting a banister as I passed out and knocking myself out cold. I had a lump so big my wonderful sister took photos with her cell phone in the ER and kept singing "The Unicorn Song." (Ok, you've got to take humor where you can find it!) Even after that, the ER doctor wanted to discharge me but my mother said "Admit her; this isn't normal in a 40 year old healthy woman!" And then, like you, I was treated to an array of tests and workups, which amounted to nothing until the tilt table. It was reassuring to read you didn't pass out and feel awful until they gave you the nitroglycerine as that's what happened to me and made me question the diagnosis as I thought I should've passed out cold on my own. Instead, I felt incredibly nauseated and wanted to pass out because it was so uncomfortable until they put the table back down. So, while I'm sorry you had to go through that, I thank you for discussing what happened: It really helped.
Since diagnosis, I have been on anti-seizure meds, other ones I don't know the purpose for, clonazepam, and midodrine. They've eliminated them all one by one until we ended up with just the midodrine and that, knock wood, seems to be working. I've been feeling better for the first time in a long time. I hadn't realized how off balance I'd felt for so long at times until the midodrine kicked in. My "episodes" included not passing out totally but feeling in a fog to the degree I couldn't drive or even hold a meaningful conversation at times.
I still exercise carefully and worry about passing out. But gradually I began feeling OK staying alone, driving again, etc. There have been other costs as I gave up my job (way too high stress which seems to be a contributor) but, worst of all, my 12 year old daughter found me after I'd hit the banister during the last incident and thought I was dead. It traumatized her and she now prefers to live with her father. I understand her fear--I was 10 years old when I sat alone with my dad while he had a major stroke--but I love and miss her so much and nothing feels the same without her.
Beth, I hope all is going well with you now and you have more answers to what's going on. There is nothing more scary than feeling like you've gone from healthy to being someone with a medical condition almost literally overnight. Thank you so much for taking the time to share your story. I know I'm not alone in letting you know it means a lot. I hope and pray you feel much better today. Please keep me posted on your progress if you have time.
Bless you,
Mary Shawn
Hello,
My name is Jennifer and ive been living with vasovagal syncope for 15 years. Im only 16 years old. Having this condition is very annoying because the public safety office wont allow me to drive. I used to have an episode every few months until the age of 7.
After i turned 7, thou i only had 2-3 a year. Until now. In the last 2 months i have had 3 episodes and every episode i have i have to wait 6 months to drive.
I understand what could happen if i passed out at the wheel, but to me, this is unfair. I know i may sound like a stubborn teen, but all my friend are having fun, getting jobs, and DRIVING. While i have to have my permit suspended until my episode are "under control."
Ive become very upset, because there is a possibility i may never drive. Im the type of person who doesnt like to have to be taken care of, especially since i have my whole life ahead of me. I mean im only 16 yrs old. I plan to get a job, go to college after high school, and become a nurse, but how will i be able to do any of those if i cant drive?
i cant have people picking me up all the time. Its just not right :/
Well, thank you for listening lol.
Good Luck,
Jennifer Knowles
Hello,
My name is Jennifer and ive been living with vasovagal syncope for 15 years. Im only 16 years old. Having this condition is very annoying because the public safety office wont allow me to drive. I used to have an episode every few months until the age of 7.
After i turned 7, thou i only had 2-3 a year. Until now. In the last 2 months i have had 3 episodes and every episode i have i have to wait 6 months to drive.
I understand what could happen if i passed out at the wheel, but to me, this is unfair. I know i may sound like a stubborn teen, but all my friend are having fun, getting jobs, and DRIVING. While i have to have my permit suspended until my episode are "under control."
Ive become very upset, because there is a possibility i may never drive. Im the type of person who doesnt like to have to be taken care of, especially since i have my whole life ahead of me. I mean im only 16 yrs old. I plan to get a job, go to college after high school, and become a nurse, but how will i be able to do any of those if i cant drive?
i cant have people picking me up all the time. Its just not right :/
Well, thank you for listening lol.
Good Luck,
Jennifer Knowles
Thanks for writing. It helps to know how other people are affected by this disorder and how they deal with it. I have been free of episodes since December when I fell on ice and was in serious pain. But I'm always a little nervous that I'll faint again especially while I'm taking a shower.
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