Within a day or two, it's been exactly one year since my last GM seizure. This one, like the other eight, happened while sound asleep. I didn't wake up during it and remember nothing. My diagnosis for seizures is SUPPOSED to be sinus trouble and sleep apnea. It's being treated, and I'm supposed to have surgery soon to fix it. I still take phenytoin and lorazepam... same amount, same times.
Same things happened... bit my tongue a little and ache all over. That was an hour ago, and I'm still tired, achy, and a little weak.
Is it just a coincidence that this one was one year after the last one? This has happened to me twice.
I wondered if things I did or ate yesterday had anything to do with this one. I was out in the sun more than usual. I walked more. I ate a steak sub for lunch. I was a little more tired than usual when I went to bed and had a little indigestion left over. Also, I've been a little dizzy lately getting out of bed... might be ear problem. I already made appt. with same ENT Doctor I see for sinuses. My blood pressure is OK.
So, has anyone had seizures that seemed to be on a schedule or due to sunlight, certain foods, or any another reason... especially if you have seizures while asleep?
Thanks!
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neurowreck
11-04-2007, 05:37 PM
Hi- I also have night seizures, but complex partials- wake up with tongue or inner cheeks chewed up, had a blood blister this week from one on the inside of my cheek, have lost bladder control (about 1/2 the time with night seizures, rarely during the day, and havent figured that out, except that I can respond to the aura when awake, and get to the bathroom- have about 2-5 minutes 'warning' with auras), and wake up feeling like I've been hit by a truck....and the lovely post-ictal headache.
I haven't figured out any patterns- temp change, (I have had an upper respiratory infection this week, but overall, the number of seizures I've had hasn't changed), period, foods, etc. If I get too tired, or am sick, I usually have seizures, but I have them about 5-8 times a month (much better than the 5-8 a week, with many back to back). I just wish I could figure out how to go back to part time work, with the unpredictability of any attendance policies. I could possibly do some very part time work at home, but nothing if it has to be done by an absolute deadline that isn't given to me several weeks in advance. This is off track- sorry.
It's frustrating.
IMNRVUS
11-04-2007, 09:30 PM
I've been on disability for other reasons for years. Even though I don't have seizures often, I really don't feel like working.
I have auras during the daytime only, and they never lead to a seizure. Sometimes I think that they're panic attacks and anxiety... had that for years too. It is frustrating knowing that I might not work again...
neurowreck
11-06-2007, 02:08 PM
I miss co-workers and having a sense of purpose. I don't miss seizing in my office and being shipped via ambulance after seizures (or in the middle of them), or being so afraid of someone seeing me seize that all I want to do is hide, get my work done, and go home. But I do miss having a feeling of usefulness. It's like my identity was stolen when I ended up not being able to work. Working was who I was- maybe not the greatest, but I really miss being a part of something.
IMNRVUS
11-06-2007, 02:33 PM
I volunteered in my doctors office for almost 2 years after my first seizure, until my doctor moved away. No pay but benefits were good. Free food, no co-pays on office visits, made friends in office and waiting room, free advice, and the best of all was that I saw people worse off than I was... made me thankful for what my health was like.
cittykat
11-07-2007, 02:11 AM
I volunteered in my doctors office for almost 2 years after my first seizure, until my doctor moved away. No pay but benefits were good. Free food, no co-pays on office visits, made friends in office and waiting room, free advice, and the best of all was that I saw people worse off than I was... made me thankful for what my health was like.
:confused: did your insurance company know you were volunteering at the docs office? i'm sure you felt at ease and made friends. but did you also learn about your medical condition and medication? i'd give anything just to spend one hour with my neurologist. (besides an eeg). good luck
IMNRVUS
11-07-2007, 11:38 AM
:confused: did your insurance company know you were volunteering at the docs office?
No... but why??? They still had to pay the rest of the bill, and weren't charged for the co-pay.
I learned more about my health and the meds on the internet and from my pharmacist than during the time I volunteered.
Also, I volunteered for my Primary care doctor, not my Neurologist. This doctor was more like a friend than a doctor except during exams. I couldn't discuss my health unless it was during a scheduled visit with him. I volunteered in the records dept. and not every day... unless someone went on vacation. It kept my mind off of my health problems.
neurowreck
11-10-2007, 03:07 AM
I"ve thought about trying to go back to work on a very limited basis, since what I do is something that once a shift starts, I'd have to be ready for a full 8-12 hours, and I can't guarantee that....but I've wondered about doing some medical office work for maybe a couple of hours a week (on disability there's a limit to how much $ I could make each month and not screw up my benefits, while still trying to get back into 'work mode', but very slowly- did it before too fast,and here I am almost 3 years after the attempt to go back, off work, and hating it- yet realize I have to be well enough to be a decent employee before getting off of disability).
wichitarick
12-15-2007, 09:47 PM
hi
Wow happened again ....plagerism lol.....all this I just read sounds sooo familar
I have had szs of all kinds for 14 yrs now and need to apply for diability have actually filled out most of the stuff and forgot what I was doing and along with a lot funerals and mortages and a bi polar wife and 3gmals in one day I am scared to death literally to work I am scared of hurting someone and the noises drive me quikly into some panic state not to mention some of this med makes me imobile for hrs in the morning.
I don,t get it I won an award at work for three yrs "never late" never a day off" I now forget no,s daily I could not do a task of any kind and not retrain myself somewhere ,daily ,weekly etc ,no garuntee and just the fact that if I have a night time gmal I will be to sore to work for 8 days .
I share your burden . and wonder constantly what to do. Rick
neurowreck
12-16-2007, 01:38 PM
I'm very sensitive to the noise of flourescent lights at work. Make me crazy. And I understand the frustration of being stuck at home for the most part. With my auras, and a percentage of night seizures, I do drive, but only on "good" days. And only within a few blocks of home.
With Social Security Disability, they do allow a certain dollar amount (evidently it's different for each person, based on disabily board discussions) each month that doesn't effect benefits, and volunteering isn't a paid thing, so it could actually be seen as helpful. It's also another source of witnesses for seizures, and ability to stay on task, or do meaningful employment consistently- consistent being the operative word..... I've had to reschedule MD and lab appts because of being too out of it.... yet I miss being useful so much. The whole thing is frustrating.