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Hi everybody -
I'm new here, and I wanted to check in about something I'm not sure about.
I believe I've been having seizures for much of my 43 years, but I was never diagnosed, and the issues I had as a kid were always treated like behavioral problems that I could overcome, rather than a medical issue.
I can remember many, many times as a kid, being transfixed -- frozen in place, while this otherworldly sense would wash over me. I also have memories of my mother being horrified by the "terrible" look on my face and my aggressive outbursts towards my siblings. I was a very intense kid, depressed and "heavy" a lot of the time. But I was also very happy, too. My dad was a minister, and my family was very involved in the church, so my outbursts and aggression was always treated like it was "sin" that needed to be forgiven. I just needed to pray, I was told, and I would get better.
I tried praying like crazy, but unfortunately it didn't "take". My family basically gave up on me, and I went on my own way in the world. I have had multiple head traumas, which have also contributed to my difficulties. In spite of it all, I'm living a very productive, mostly positive and happy life. Except for when I'm not, if you know what I mean.
I have had many episodes throughout my youth and adulthood of being frozen in place and flooded with bliss/ecstasy... OR being suddenly plunged down into a very dark place, just out of nowhere. Those bad episodes often happened when I was under stress/wasn't getting enough sleep, or I was very overwhelmed with sensations. I'm in an 18-year marriage, and my partner has really borne the brunt of my sudden "fits", which I could never control, and which always made me feel horribly guilty and defective afterwards.
I have not seen a lot of change over the years, until the past six months or so. Back in April, I had an episode where I was actually frozen in place and started to spasm (my hand and face), and then I "went down the dark hole" and ended up hurting myself a little to stop the downward spiral. I don't want to go there again.
About three weeks later, I was with family and was very overwhelmed, and we were at a family outing, when I suddenly became blind and deaf and could not move for about 5-10 seconds. Nobody noticed it -- everybody was caught up in their own excitement -- but I suddenly became aware that I couldn't see or hear anything. And I couldn't move. It wasn't scary. It was actually a relief!
Then, over the following month, I had several episodes of my eyes and head being pulled to the upper left side of where I was looking -- in the shower while I was getting ready for work, as well as at work, when I was at my computer. It didn't frighten me, but it seemed strange. And I also noticed myself being absent for a short period while I was driving -- and my fingers were picking at my buttons, which is something I would never do on my own.
I've been doing research on this, and I keep seeing "This is a medical emergency - seek help immediately!" on websites. But I'm not sure what I should do. I'm the sole breadwinner for my family, and I have a good job. I don't want to lose it all, because of something that's been with me my whole life and hasn't caused any disasters (yet). But I also don't want to endanger myself or others.
I'm trying to keep "chill" and keep my stress down... that seems to be helping. But I'm concerned about the possibility of something happening, and I'm not sure how/when to go about finding out about this whole situation. I have a hard time articulating things to my doctor(s) and I don't want to end up getting sucked into the medical system and given all these expensive tests and have to surrender my license, if there's not something seriously wrong.
I want to find help, but I'm not sure where to start. Can somebody give me a reality check and tell me if you think this is the kind of thing that I should follow up on immediately?
I just don't know...
Thanks in advance for your input.
K Rainey
Recent Comments on this Discussion
You really should see a Neurologist. Tests need to be taken in order to figure exactly WHAT is happening. Now, I don't know what country you live in, but if you live in the USA you CANNOT be fired because you have a disability (Americans whith Disability Act). Always take someone with you when you see a dr, someone who sees the szs and can describe them. Hopefully you have someone who believes and has seen you have one of your "episodes". Either way, you describe them well.
Stress & sleep deprivation are definitely (sp?) causes of seizures. Be careful driving. I had seizures while sleeping 16 years ago so kept driving. One day I had one while I was wide awake, driving during commute hours. Thankfully I can feel when they start so I attempted to pull over. By the time I got to the right side of the road I was out. I slammed between trees, destroying my 1 yr old car. But no one was hit or hurt. I stopped driving after that, and really haven't driven since.
Good luck and best wishes. Diana
I believe I've been having seizures for much of my 55 years, but I was first officially diagnosed simple partial/simple complex seizures by a neurologist 21 years ago. I had already spent all my money unsuccessfully looking for employment in line with my college education, and being in my mid 30's then, money on the street evaporated; destitute's MediCruz wouldn't back up the epilepsy with expensive tests, but only tried hit-and-miss AED's with non-specialist doctors until they lost my records in the 1989 earthquake.
The symptoms of my earlier Temporal Lobe Epilepsy are very similar to your symptoms, but stress didn't seem to aggravate mine. My TLE really messed up my informal speech in "meet-and-deal" situations. When clusters of TLE hit me hard, I would either "speak in tongues," popular in some churches but nowhere else, or would remain mute and at times be able to say something by writing it down first, and then reading it back aloud. Even with each small seizure in a cluster lasting at most a minute, this made my speech very awkward, but I might answer a phone this way and hope for the best. Neither prayers or Dale Carnegie courses helped my verbal performance around the times of partial seizures.
I don't believe anybody without TLE can really understand the brief various sensations between absolute dread and absolute bliss/ecstasy, beyond a crude verbal description.
I typically blamed my periods of "white-out"/"black-out" blindness on migraine headaches during periods of "numb" headaches; whether a set symptoms are from epilepsy or migraines, nobody knows, as they overlap greatly and the length of experience as a differential of the two is arbitrary.
My TLE started generalizing to very strong tonic/clonic seizures about 13 years ago with many trips to ER; their advice was to see a neurologist, but with Medicaid in this county, NO WAY! Finally, after almost 17 years of gran mal seizures and no AEDs, I suffered a near fatal subdural hematoma from a seizure and put back on AEDs through a different county's ER.
Sorry for being so wordy (this is a symptom too!), but books like "Imitators of Epilepsy" by Kaplan/Fisher give a great range of possibilities across sets of symptoms including epilepsy and the respective dangers. The drugs for epilepsy are horrible, they lessen my gran mals but not my partials, and I don't know if my newer problems are from brain damage or side-effects from the drugs; life without drugs was better, but dangerous. One basic theory based on the generally rejected notion of"kindling" holds that untreated minor seizures damages surrounding brain tissue, and over the years, can develop into major un-treatable seizures; then again, strange "numb" migraine headaches might not be co-morbid with epilepsy, so it might be possible, and dangerous, to blame everything on migraines to avoid society's expensive prejudice against epilepsy.
Good Luck!
Hi,
You need to see a neurologist. The fact that these episodes are changing from what you have had in the past is a cause for some concern. Of course I don't know if you are having seizures or not, but I think you should be checked out anyway and find out what is going on.