Do I really have SZ's?

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Ok so my entire life ive had this thing i called "The sickness". It's this thing that has happened through out the years with no pattern. I saw doctors about it all the time growing up, but they never knew what it was. But a few months ago i had it and the doctor diagnosed it as SZ's and perscribed me 500MGs of keppra. I looked up the side effects and i never took it because of that. This sickness only happens, maybe, twice a year and i dont think its worth it for that. But now on to my real question. I want to go into detail about it and see if its the same as what you go through. It starts with the feeling of my stomach dropping. Then my body feels cold, and a few minutes later i become dead tired. If i go to sleep i will sleep between 20-30 minutes and wake up feeling fine(i cant sleep any more than that). For the next hour or two ill be fine, but then it will happen again. It happens all day when it does happen. But when i actually go to sleep at night and wake up in the morning ill be fine and good for another year usually. But it has lasted for two days, i want to say, twice in the 30 years. And if i dont go to sleep i will percieve everything fine and to me i talk normal, but i guess for the next 5-10 minutes ill will speak gibberish. I can still work and do everything else fine, i guess i just cant talk. After the time is up i instantly feel better and im normal until it happens again. Which brings me here. After reading all the side effects I just never took the medicine. I question if its really SZ's because i feel like if it was i think i would have had more than one SZ over the last 30 years of this happening. And honestly i know doctors are doctors and what ever, but since i moved to Alabama from New England i just dont trust them. I legit know a doctor here who is a meth head with 5 other nurses who do it with him. And he works at the same place i was diagnosed at. I just find it hard to believe that all the big time doctors up north couldnt figure out what it was for 20 years, but these guys could day one. I think its just them being lazy, like everyone else is here in this state. And i dont want to suffer from the side effects of this medicine if its not really the case. And if it really is SZ's, can i just take one of the pills when i feel sick to cure it? With all the side effects it just doesnt seem worth it to take it daily for something that only happens once a year.

Comments

one doesn't usually gain

Submitted by Amy Jo on Tue, 2017-04-11 - 15:13

one doesn't usually gain disability (in fact disability is very hard to get) or always lose a job, etc... more than half of people have seizures controlled with meds/diet. meds have a shelf life even under optimal storage conditions so educate yourself. for some people's situations, under the ongoing care of a good doc, certain drugs might be given for infrequent warnings of imminent seizures. without a proper evaluation of your risk and situation, one should not play around with these drugs. you have a good chance you are having seizures. it might not always stay at one a year (could get worse, could stop). suggest you get real insurance and get it checked out. while a few docs are not working in your best interest, not all are bad. most problematic interactions wrt epilepsy are because many docs do not know very much about epilepsy, that includes general neurologists. that's why people suggest epileptologists.

Yeah, I’ve had “the sickness”

Submitted by Tadzio on Tue, 2017-04-11 - 21:31

Yeah, I’ve had “the sickness” since I can remember. I discovered in the final years at university that they were periodic clusters of simple partial seizures of temporal lobe epilepsy (with my earliest initiating symptoms pointing to the right amygdala).Focusing on only the periodic clusters, I tried to ignore simple partial seizures since doctors would dismiss them as malingering or worse. When they would kindle into a more complex partial seizure, a misbehavior or side effect of a slight flu would be added to the opinion. When they would kindle into secondarily tonic-clonic seizures occasionally, & if a doctor observed them, a wider range of disorders would be ascribed. I gave up on doctors resolving “the sickness” when one doctor tried to stop a longer than usual cluster with tinctures of opium and a follow-up doctor blamed everything on mysterious blood and weight losses; the treatment regimen also disrupted keeping my GPA high enough to continue with scholarships at UNM in 1973.During my final semesters at SJSU, one of my psych professors brought up that my cluster of seizures during class wasn’t a heart attack like the class firstly assumed, but was probably epilepsy, and with the characteristics, a temporal lobe type, which also more plausibly explained the TLE “fingerprint” on my MMPI profile.Soon as prospective employers become aware of epilepsy, it is a complete career ender. As I was getting older, I couldn’t rely on sources for money that depended upon my youth, and despite having university degrees in psychology and business accounting, the State Rehab counselor told me I better choose a disability other than epilepsy or to get lost with at best only a chance of SSI disability payments.While I was placed on SSI, with about a total of now $890 a month to live on, I don’t drive, the courts ruled I don’t have any rights to any employment I’m otherwise qualified for, that I may be committing a crime if I cook meals for myself (while the State holds my disability does not qualify me for meals assistance), and even with Medicaid, only physician assistants provide medical advice which is to be satisfied with hospice services according to them, and pharmacy providers refuse to refill Keppra prescriptions with Medicaid (providers are rumored to take back narcotics through prescriptions to facilitate approving expensive non-narcotic prescriptions, so the medical meth-heads aren’t alone across the country).I rely on out-dated Keppra that I previously hoarded, and I take a strong dose when I get a warning of clusters that are becoming extreme into tonic-clonics; the 3 to 4 year out-dated Keppra seems to be getting more physical side-effects as they age, but they still stop my tonic-clonics from developing from a bad cluster of partial seizures; the psych side-effects seem to be about the same and minor as with fresh Keppra, but some individuals get severe psych side-effects even with fresh pills.My career would have probably had a better chance if I was more successful in hiding my epilepsy, and avoiding more doctors until I was wealthy enough to shop for highly qualified doctors. When epilepsy evolves to more life-threatening levels before wealth, that’s a more dangerous chance or with chancing more poorly qualified doctors. The laws protecting disability seem to be weakening, like today’s news of “complain about the seating, you’ll get a beating”, and Justice Gorsuch taking the time to read the exceptions listed on life-preservers before he tosses one to someone drowning, otherwise, he probably follows the “Do Not Remove” sign.If you want to blame anything other than epilepsy, a good book is “imitators of Epilepsy” by Kaplan & Fisher (2004). The book is higher priced now, but previews are at amazon and books-dot-google. Most anything neurological can be firstly blamed on migraines as suspect, then reactive hypoglycemia, then….

Yeah, I’ve had “the sickness” since I can remember.  I discovered in the final years at university that they were periodic clusters of simple partial seizures of temporal lobe epilepsy (with my earliest initiating symptoms pointing to the right amygdala).Focusing on only the periodic clusters, I tried to ignore simple partial seizures since doctors would dismiss them as malingering or worse.  When they would kindle into a more complex partial seizure, a misbehavior or side effect of a slight flu would be added to the opinion.  When they would kindle into secondarily tonic-clonic seizures occasionally, & if a doctor observed them, a wider range of disorders would be ascribed.   I gave up on doctors resolving “the sickness”  when one doctor tried to stop a longer than usual cluster with tinctures of opium and a follow-up doctor blamed everything on mysterious blood and weight losses;  the treatment regimen also disrupted keeping my GPA high enough to continue with scholarships at UNM in 1973.During my final semesters at SJSU, one of my psych professors brought up that my cluster of seizures during class wasn’t a heart attack like the class firstly assumed, but was probably epilepsy, and with the characteristics, a temporal lobe type, which also more plausibly explained the TLE “fingerprint” on my MMPI profile.Soon as prospective employers become aware of epilepsy, it is a complete career ender.    As I was getting older, I couldn’t rely on sources for money that depended upon my youth, and despite having university degrees in psychology and business accounting, the State Rehab counselor told me I better choose a disability other than epilepsy or to get lost with at best only a chance of SSI disability payments.While I was placed on SSI, with about a total of now $890 a month to live on, I don’t drive, the courts ruled I don’t have any rights to any employment I’m otherwise qualified for, that I may be committing  a crime if I cook meals for myself (while the State holds my disability does not qualify me for meals assistance), and even with Medicaid, only physician assistants provide medical advice which is to be satisfied with hospice services according to them, and pharmacy providers refuse to refill Keppra prescriptions with Medicaid (providers are rumored to take back narcotics through prescriptions to facilitate approving expensive non-narcotic prescriptions, so the medical meth-heads aren’t alone across the country).I rely on out-dated Keppra that I previously hoarded, and I take a strong dose when I get a warning of clusters that are becoming extreme into tonic-clonics;  the 3 to 4 year out-dated Keppra seems to be getting more physical side-effects as they age, but they still stop my tonic-clonics from developing from a bad cluster of partial seizures;  the psych side-effects seem to be about the same and minor as with fresh Keppra, but some individuals get severe psych side-effects even with fresh pills.My career would have probably had a better chance if I was more successful in hiding my epilepsy, and avoiding more doctors until I was wealthy enough to shop for highly qualified doctors.  When epilepsy evolves to more life-threatening levels before wealth, that’s a more dangerous chance or with chancing more poorly qualified doctors.  The laws protecting disability seem to be weakening, like today’s news of “complain about the seating, you’ll get a beating”, and Justice Gorsuch taking the time to read the exceptions listed on life-preservers before he tosses one to someone drowning, otherwise, he probably follows the “Do Not Remove” sign.If you want to blame anything other than epilepsy, a good book is “imitators of Epilepsy” by Kaplan & Fisher (2004).  The book is higher priced now, but previews are at amazon and books-dot-google.  Most anything neurological can be firstly blamed on migraines as suspect, then reactive hypoglycemia, then….

Yeah, I’ve had “the sickness” since I can remember. I discovered in the final years at university that they were periodic clusters of simple partial seizures of temporal lobe epilepsy (with my earliest initiating symptoms pointing to the right amygdala).Focusing on only the periodic clusters, I tried to ignore simple partial seizures since doctors would dismiss them as malingering or worse. When they would kindle into a more complex partial seizure, a misbehavior or side effect of a slight flu would be added to the opinion. When they would kindle into secondarily tonic-clonic seizures occasionally, & if a doctor observed them, a wider range of disorders would be ascribed. I gave up on doctors resolving “the sickness” when one doctor tried to stop a longer than usual cluster with tinctures of opium and a follow-up doctor blamed everything on mysterious blood and weight losses; the treatment regimen also disrupted keeping my GPA high enough to continue with scholarships at UNM in 1973.During my final semesters at SJSU, one of my psych professors brought up that my cluster of seizures during class wasn’t a heart attack like the class firstly assumed, but was probably epilepsy, and with the characteristics, a temporal lobe type, which also more plausibly explained the TLE “fingerprint” on my MMPI profile.Soon as prospective employers become aware of epilepsy, it is a complete career ender. As I was getting older, I couldn’t rely on sources for money that depended upon my youth, and despite having university degrees in psychology and business accounting, the State Rehab counselor told me I better choose a disability other than epilepsy or to get lost with at best only a chance of SSI disability payments.While I was placed on SSI, with about a total of now $890 a month to live on, I don’t drive, the courts ruled I don’t have any rights to any employment I’m otherwise qualified for, that I may be committing a crime if I cook meals for myself (while the State holds my disability does not qualify me for meals assistance), and even with Medicaid, only physician assistants provide medical advice which is to be satisfied with hospice services according to them, and pharmacy providers refuse to refill Keppra prescriptions with Medicaid (providers are rumored to take back narcotics through prescriptions to facilitate approving expensive non-narcotic prescriptions, so the medical meth-heads aren’t alone across the country).I rely on out-dated Keppra that I previously hoarded, and I take a strong dose when I get a warning of clusters that are becoming extreme into tonic-clonics; the 3 to 4 year out-dated Keppra seems to be getting more physical side-effects as they age, but they still stop my tonic-clonics from developing from a bad cluster of partial seizures; the psych side-effects seem to be about the same and minor as with fresh Keppra, but some individuals get severe psych side-effects even with fresh pills.My career would have probably had a better chance if I was more successful in hiding my epilepsy, and avoiding more doctors until I was wealthy enough to shop for highly qualified doctors. When epilepsy evolves to more life-threatening levels before wealth, that’s a more dangerous chance or with chancing more poorly qualified doctors. The laws protecting disability seem to be weakening, like today’s news of “complain about the seating, you’ll get a beating”, and Justice Gorsuch taking the time to read the exceptions listed on life-preservers before he tosses one to someone drowning, otherwise, he probably follows the “Do Not Remove” sign.If you want to blame anything other than epilepsy, a good book is “imitators of Epilepsy” by Kaplan & Fisher (2004). The book is higher priced now, but previews are at amazon and books-dot-google. Most anything neurological can be firstly blamed on migraines as suspect, then reactive hypoglycemia, then….