mishaparem
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Hello ladies and gentlemen, my name is Misha, and I'm a diagnosed "high risk for epilepsy". Here's my (really long) story:
A little back ground before my seizure story I suppose - my dad passed away in April 2012 after refusing to seek treatment for his prostate cancer until it paralyzed him, and the pre-op doc said the cancer was in his back, and pinched off his nerves. And since then, my mom started trying to get me to eat anti-prostate supplements, as well as almost any other supplement that exists in the world, despite there being no credible evidence linking nutrition, or lack there of to prostate cancer. My sister has always been a health nut.
My first and only seizure episode was on labor day about (3 months ago) at a family gathering. The description that my family and gave my neurologist was: I was got light headed, went unconscious, slumped and fell to the floor, then came to long enough to say, "I'm fine" (typical me), and walk two steps to the couch with the help of family members, then I went unconscious and convulsed for probably a minute. Apparently my blood stopped circulating and I stopped breathing for a few seconds after that (according to my mom who probably almost had a heart attack herself). So the neurologist says, "sounds like you had two back to back seizures", I tried to explain that by "conscious" I meant I vaguely remember saying "I'm fine" among other things that I apparently said which I didn't remember, and that I didn't remember getting up, or sitting down on the couch, just the one step in between, but my family quickly hushed me up (dad and health nut thing mentioned above). Doc said that two back to back seizures put me at high risk of reoccurring seizures and epilepsy, so I should start Keppra right away, it's great it's wonderful, and it doesn't have side effects. My family cheered her on, and it wasn't until she was half way through filling out the prescription that I was able to find out about EEG and MRI tests that could shed light onto other problems, and/or give some basis (not hard evidence) for potential epilepsy development. So I was able to come to a compromise with the doc and my family that I would take the EEG and MRI before I started Keppra. MRI was clean, CAT/CP from the ER was clean, now the EEG was interesting. The technician clearly stated that all brainwave activity seemed absolutely normal with the exception of 3-4 segments where one of the sensors seemed to be showing the mirror image of another sensor, the technician said one of the sensors may have been placed slightly off, so it was picking up on the part of the brain that the other sensor was monitoring. Doc said, "that's fine, it's probably a dejavu wave" (wow, what a med-school, super technical term). Anyhow apparently the EEG was clear with the exception of my dejavus which happened while I was sleeping, but Doc said I should take Keppra anyhow because none of the tests could prove I didn't have epilepsy. At this point all I really wanted was my drivers license back and I didn't really care who I had to please to get it, so I went along with it.
A week later I visited my GP just in case, he said that apparently seizures can happen from radical drop in blood pressure. Surprise, surprise... what do people do on holidays? DRINK!!! and if you're Russian, what do you do after that? DRINK! SMOKE! DRINK! and after that, maybe some tea. Yes I'm aware that tobacco actually raises blood pressure, but after any high, there's always a crash, and after your blood pressure high, your blood pressure drops back to normal (or lower). So I'm just speculating, but after all that drinking, smoking, tea, and after my mom measured very low blood pressure right after the seizure, I was sort of seeing a strong pattern. I wonder why my neurologist never mentioned this... anyhow, I just wanted my license and didn't want to stir the hornet's nest just to be safe.
Approximately three months later (aka today) I visit my neurologist, get my paperwork and signature, and then I pop the question, "How do I get off of Keppra?" The look on her face! It was as if I was committing suicide and killing her all at once, I get it - it may be risky and what not, but lets face it, I could have not asked the question, and just stopped Keppra my own way, and hell, that seems more dangerous to me than consulting with a doctor first. Immediately she starts popping out references to other medication, so I listen, and tell her that I don't want any other medication because I'm aware that some of them have much more severe side effects, I just want to get off of Keppra. She's really hating me now, so she starts trying to guilt trip me - what if I get off of Keppra, have a seizure while driving, and kill someone? I explained that I was willing to stay away from driving while I was getting off of Keppra, but she just kept on her babbling about how we could do other medication, and how I'd be sorry if I had a seizure and ran someone over, etc. It was quite obvious to me that I was not going to get a straight answer to my question without being rude, and I hate being rude. Anyhow, I got what I wanted - the signature for DMV, and I left, but not before she requested blood levels every 3 months for the next two years that I'm supposed to be on Keppra.
I like to think I'm not a complete idiot, and I know that if I go against her, and I have a seizure, then I could run into problems with insurance companies. I'm definitely going to seek other opinions and if everyone says to stay on medication, than I probably will, but I really don't like being put between a rock and a hard place. Personally I found this experience revolting - the doc never even attempted to see how I would fair without seizure medication, and could not find any indication that I am even the slightest less healthy than a horse. Furthermore she is avoiding giving me a safe schedule to wane off of Keppra which could put someone else at risk if they decide to go cold turkey or make up their own schedule. What really gets to me is that she was ready to prescribe Keppra without an MRI that could have shown a tumor or growth as the cause of a seizure, and without and EEG. "Seizure? KEPPRAAAAA!!!!"
I tell you this story because despite other doctor's opinions on my particular case, the way my case was handled, including associating it with epilepsy with no conclusive evidence does the rest of you no justice. It is because of cases like mine, that the cure (not treatment) for epilepsy will take longer to find - if doctors blindly prescribe seizure medication to anyone and everyone who has had a single seizure episode, then the people researching epilepsy will have to shift through tons of useless data at best, and what's worse is that some researchers may take a case, find something they think is useful, pursue it, and then find out it was a dead end after having wasted months or years of research. If I have epilepsy, I want to know for sure, not just a, "you are at high risk for maybe having epilepsy, but 'ya never know' right?" If it takes me having more seizures to know for certain, even if I have to intentionally lower my seizure threshold for the sake of some medical tests, I'm willing to do that, rather than a vague "maybe".
Good luck everyone, I hope one day we can live without diseases, infections, and cancer. Until then, I'll continue to contribute blood, time, and resources however I can - in the short time between my dad's passing and my license being suspended, I did a few motorcycle ride outs for similar causes, I'll keep a special eye out for epilepsy rides. The more people know, the more people contribute, heck the ladies that started breast cancer awareness did a great thing for their community, mortality rates of breast cancer patients dropped to incredible lows just because women became aware and started looking for symptoms. People can solve the impossible, as long as they know it needs solving.
A little back ground before my seizure story I suppose - my dad passed away in April 2012 after refusing to seek treatment for his prostate cancer until it paralyzed him, and the pre-op doc said the cancer was in his back, and pinched off his nerves. And since then, my mom started trying to get me to eat anti-prostate supplements, as well as almost any other supplement that exists in the world, despite there being no credible evidence linking nutrition, or lack there of to prostate cancer. My sister has always been a health nut.
My first and only seizure episode was on labor day about (3 months ago) at a family gathering. The description that my family and gave my neurologist was: I was got light headed, went unconscious, slumped and fell to the floor, then came to long enough to say, "I'm fine" (typical me), and walk two steps to the couch with the help of family members, then I went unconscious and convulsed for probably a minute. Apparently my blood stopped circulating and I stopped breathing for a few seconds after that (according to my mom who probably almost had a heart attack herself). So the neurologist says, "sounds like you had two back to back seizures", I tried to explain that by "conscious" I meant I vaguely remember saying "I'm fine" among other things that I apparently said which I didn't remember, and that I didn't remember getting up, or sitting down on the couch, just the one step in between, but my family quickly hushed me up (dad and health nut thing mentioned above). Doc said that two back to back seizures put me at high risk of reoccurring seizures and epilepsy, so I should start Keppra right away, it's great it's wonderful, and it doesn't have side effects. My family cheered her on, and it wasn't until she was half way through filling out the prescription that I was able to find out about EEG and MRI tests that could shed light onto other problems, and/or give some basis (not hard evidence) for potential epilepsy development. So I was able to come to a compromise with the doc and my family that I would take the EEG and MRI before I started Keppra. MRI was clean, CAT/CP from the ER was clean, now the EEG was interesting. The technician clearly stated that all brainwave activity seemed absolutely normal with the exception of 3-4 segments where one of the sensors seemed to be showing the mirror image of another sensor, the technician said one of the sensors may have been placed slightly off, so it was picking up on the part of the brain that the other sensor was monitoring. Doc said, "that's fine, it's probably a dejavu wave" (wow, what a med-school, super technical term). Anyhow apparently the EEG was clear with the exception of my dejavus which happened while I was sleeping, but Doc said I should take Keppra anyhow because none of the tests could prove I didn't have epilepsy. At this point all I really wanted was my drivers license back and I didn't really care who I had to please to get it, so I went along with it.
A week later I visited my GP just in case, he said that apparently seizures can happen from radical drop in blood pressure. Surprise, surprise... what do people do on holidays? DRINK!!! and if you're Russian, what do you do after that? DRINK! SMOKE! DRINK! and after that, maybe some tea. Yes I'm aware that tobacco actually raises blood pressure, but after any high, there's always a crash, and after your blood pressure high, your blood pressure drops back to normal (or lower). So I'm just speculating, but after all that drinking, smoking, tea, and after my mom measured very low blood pressure right after the seizure, I was sort of seeing a strong pattern. I wonder why my neurologist never mentioned this... anyhow, I just wanted my license and didn't want to stir the hornet's nest just to be safe.
Approximately three months later (aka today) I visit my neurologist, get my paperwork and signature, and then I pop the question, "How do I get off of Keppra?" The look on her face! It was as if I was committing suicide and killing her all at once, I get it - it may be risky and what not, but lets face it, I could have not asked the question, and just stopped Keppra my own way, and hell, that seems more dangerous to me than consulting with a doctor first. Immediately she starts popping out references to other medication, so I listen, and tell her that I don't want any other medication because I'm aware that some of them have much more severe side effects, I just want to get off of Keppra. She's really hating me now, so she starts trying to guilt trip me - what if I get off of Keppra, have a seizure while driving, and kill someone? I explained that I was willing to stay away from driving while I was getting off of Keppra, but she just kept on her babbling about how we could do other medication, and how I'd be sorry if I had a seizure and ran someone over, etc. It was quite obvious to me that I was not going to get a straight answer to my question without being rude, and I hate being rude. Anyhow, I got what I wanted - the signature for DMV, and I left, but not before she requested blood levels every 3 months for the next two years that I'm supposed to be on Keppra.
I like to think I'm not a complete idiot, and I know that if I go against her, and I have a seizure, then I could run into problems with insurance companies. I'm definitely going to seek other opinions and if everyone says to stay on medication, than I probably will, but I really don't like being put between a rock and a hard place. Personally I found this experience revolting - the doc never even attempted to see how I would fair without seizure medication, and could not find any indication that I am even the slightest less healthy than a horse. Furthermore she is avoiding giving me a safe schedule to wane off of Keppra which could put someone else at risk if they decide to go cold turkey or make up their own schedule. What really gets to me is that she was ready to prescribe Keppra without an MRI that could have shown a tumor or growth as the cause of a seizure, and without and EEG. "Seizure? KEPPRAAAAA!!!!"
I tell you this story because despite other doctor's opinions on my particular case, the way my case was handled, including associating it with epilepsy with no conclusive evidence does the rest of you no justice. It is because of cases like mine, that the cure (not treatment) for epilepsy will take longer to find - if doctors blindly prescribe seizure medication to anyone and everyone who has had a single seizure episode, then the people researching epilepsy will have to shift through tons of useless data at best, and what's worse is that some researchers may take a case, find something they think is useful, pursue it, and then find out it was a dead end after having wasted months or years of research. If I have epilepsy, I want to know for sure, not just a, "you are at high risk for maybe having epilepsy, but 'ya never know' right?" If it takes me having more seizures to know for certain, even if I have to intentionally lower my seizure threshold for the sake of some medical tests, I'm willing to do that, rather than a vague "maybe".
Good luck everyone, I hope one day we can live without diseases, infections, and cancer. Until then, I'll continue to contribute blood, time, and resources however I can - in the short time between my dad's passing and my license being suspended, I did a few motorcycle ride outs for similar causes, I'll keep a special eye out for epilepsy rides. The more people know, the more people contribute, heck the ladies that started breast cancer awareness did a great thing for their community, mortality rates of breast cancer patients dropped to incredible lows just because women became aware and started looking for symptoms. People can solve the impossible, as long as they know it needs solving.
