Greetings !
- Thread starter Westwind
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Welcome
I am suprised that you weren't sent to the cardiologist first as Cardiac disorders are known to cause seizures.
Was there an evaluation done on that- I know with me I had Rheumatic fever
younger and the first thing they did was check cardiac /valves /electrical
wasn't causing seizures.
Surgery is interesting concept - I don't think I would have the courage to have it done- I know it's getting better, more precise but not yet for me.
VNS was brought up by my first Neurologist , who scared me to death by also saying I would never have relief or find any seizures until I had internal brain testing done.Funny nothing has ever shown up so far- so maybe he was right.
Keep us posted on how things go!
I am suprised that you weren't sent to the cardiologist first as Cardiac disorders are known to cause seizures.
Was there an evaluation done on that- I know with me I had Rheumatic fever
younger and the first thing they did was check cardiac /valves /electrical
wasn't causing seizures.
Surgery is interesting concept - I don't think I would have the courage to have it done- I know it's getting better, more precise but not yet for me.
VNS was brought up by my first Neurologist , who scared me to death by also saying I would never have relief or find any seizures until I had internal brain testing done.Funny nothing has ever shown up so far- so maybe he was right.
Keep us posted on how things go!
Westwind
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Sorry I've been AWOL lately. Been a busy month.
I was sent to a Cardiologist in the mid-90's after some chest pains. Did a stress test and he said I was 'positive' for blockages, so I had an angiogram. The doctor found that I had an inverted valve.....said it was like Mitral Valve Prolapse, but that it is my tricuspid valve not Mitral valve. Said it was nothing to worry about (yeah right), that it was a birth defect, and to expect chest pains, blood running backwards into my lungs, etc etc. Said that I might eventually need meds, perhaps valve replacement and/or a pace maker someday (so don't worry about it, eh?...hmmmm.)
My GP wants me to see another Cardiologist since it's been 15 years, but wants my epilepsy situation 'settled' (ha!) first. Yes, I do think it's time for a different GP.
Went to see an Epileptologist in Seattle July 1st. I was really impressed with her, one of the most intelligent people I've met. Kind of a good news/bad news/ugly news result. I have a new diagnosis of Myoclonic epilepsy. She did a great job of linear troubleshooting on me, and the new diagnosis fits like a glove.
That leaves the question of whether it's idiopathic or progressive, and unfortuntely things lean toward progressive. That's a little scary.
First time in all these decades when I've felt a difference between the sides of my body during the neurological exam. The doctor placed a cold instrument against my right leg, told me it should feel cold. But it didn't right away. Strange. Placed it against my left leg and it was very cold immediately. Did some more checking, and my whole right side has less sensation now, but it's much more dramatic on my right leg. I've been having trouble walking, and that helps explain why. So I've walking with a cane now. I don't like it, but I have to admit to myself that it helps quite a bit.
Her parting words were: "I think you are doing very badly, and you need to stop everything you are doing." I appreciate that, but I have to have an income. Can't just stop everything.
Needless to say, work has been a problem. Even had the top manager try to prevent me from taking time off for the doctor, and to go to my parents 50th anniversary last week (even though I got his signed approval last October). Tried to withhold the vacation time that I've already earned. Made me furious, triggered 3 days straight of seizures. Just sat on the couch with my eyes closed and sunglasses on (yes, in the house in the dark - it helped some) jerking for hours at a time. I had to threaten a lawsuit. I still come home from work exhausted everyday an my body just throbs. They still require me to do the things I've told them I can't be doing.
Anyway, I'm going back to Seattle the first week of August for another MRI and scheduled for a week long VEEG. My half-sister is going to fly in from Kentucky to sit with me.
The epileptologist doesn't think surgery is an option for me. Sounds like Zonegran is the last med available for me to try, and said that although VNS is not approved for myoclonic, it might be helpful. But my neurologist said that Zonegran is related to Topomax, and I hated that stuff - terrible side effects. Got off it after only six weeks.
I'm generally bracing for having to go through the disability process. *shudders*
I was sent to a Cardiologist in the mid-90's after some chest pains. Did a stress test and he said I was 'positive' for blockages, so I had an angiogram. The doctor found that I had an inverted valve.....said it was like Mitral Valve Prolapse, but that it is my tricuspid valve not Mitral valve. Said it was nothing to worry about (yeah right), that it was a birth defect, and to expect chest pains, blood running backwards into my lungs, etc etc. Said that I might eventually need meds, perhaps valve replacement and/or a pace maker someday (so don't worry about it, eh?...hmmmm.)
My GP wants me to see another Cardiologist since it's been 15 years, but wants my epilepsy situation 'settled' (ha!) first. Yes, I do think it's time for a different GP.
Went to see an Epileptologist in Seattle July 1st. I was really impressed with her, one of the most intelligent people I've met. Kind of a good news/bad news/ugly news result. I have a new diagnosis of Myoclonic epilepsy. She did a great job of linear troubleshooting on me, and the new diagnosis fits like a glove.
That leaves the question of whether it's idiopathic or progressive, and unfortuntely things lean toward progressive. That's a little scary.
First time in all these decades when I've felt a difference between the sides of my body during the neurological exam. The doctor placed a cold instrument against my right leg, told me it should feel cold. But it didn't right away. Strange. Placed it against my left leg and it was very cold immediately. Did some more checking, and my whole right side has less sensation now, but it's much more dramatic on my right leg. I've been having trouble walking, and that helps explain why. So I've walking with a cane now. I don't like it, but I have to admit to myself that it helps quite a bit.
Her parting words were: "I think you are doing very badly, and you need to stop everything you are doing." I appreciate that, but I have to have an income. Can't just stop everything.
Needless to say, work has been a problem. Even had the top manager try to prevent me from taking time off for the doctor, and to go to my parents 50th anniversary last week (even though I got his signed approval last October). Tried to withhold the vacation time that I've already earned. Made me furious, triggered 3 days straight of seizures. Just sat on the couch with my eyes closed and sunglasses on (yes, in the house in the dark - it helped some) jerking for hours at a time. I had to threaten a lawsuit. I still come home from work exhausted everyday an my body just throbs. They still require me to do the things I've told them I can't be doing.
Anyway, I'm going back to Seattle the first week of August for another MRI and scheduled for a week long VEEG. My half-sister is going to fly in from Kentucky to sit with me.
The epileptologist doesn't think surgery is an option for me. Sounds like Zonegran is the last med available for me to try, and said that although VNS is not approved for myoclonic, it might be helpful. But my neurologist said that Zonegran is related to Topomax, and I hated that stuff - terrible side effects. Got off it after only six weeks.
I'm generally bracing for having to go through the disability process. *shudders*
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Endless
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Westwind,
I'm so sorry to hear about your heart, and about your health in general. It is so hard to deal with it all. I'm glad, though, you found a good epi. That's half the battle.
You are entitled to 3 months of family and medical leave through the family and medical leave act (FMLA). Your manager can't stop you from taking time off to see the doctor. Here's a link to the law:
http://www.dol.gov/compliance/laws/comp-fmla.htm
Hang in there. <<<virtual hug>>>
I'm so sorry to hear about your heart, and about your health in general. It is so hard to deal with it all. I'm glad, though, you found a good epi. That's half the battle.
You are entitled to 3 months of family and medical leave through the family and medical leave act (FMLA). Your manager can't stop you from taking time off to see the doctor. Here's a link to the law:
http://www.dol.gov/compliance/laws/comp-fmla.htm
Hang in there. <<<virtual hug>>>
Westwind
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Yeah, it's great to have a competent doctor. She wasn't happy with what the last 5 Neurologists had done for me over the decades either. Disgusted, actually.
Problem is, the company I work for only has 24 employees, so the FMLA doesn't apply. The company even made sure everyone knows it by specifically declaring that it doesn't apply and isn't recognized by the company in the employee handbook. The law only applies to companies over 50 employees.
Even ADA is questionable as to whether or not it applies in my case. It applies to companies over 15 employees, but this company has 4 branches (one in each of four cites), only 9 at the home branch where I work. For me to be gone would be a hardship for the company, so ADA doesn't apply.
And this is one of the largest employers in Montana. *shrugs*
Problem is, the company I work for only has 24 employees, so the FMLA doesn't apply. The company even made sure everyone knows it by specifically declaring that it doesn't apply and isn't recognized by the company in the employee handbook. The law only applies to companies over 50 employees.
Even ADA is questionable as to whether or not it applies in my case. It applies to companies over 15 employees, but this company has 4 branches (one in each of four cites), only 9 at the home branch where I work. For me to be gone would be a hardship for the company, so ADA doesn't apply.
And this is one of the largest employers in Montana. *shrugs*
Ruth
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:agree:
Westwind
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*recycles the old thread*
Hello again ! Sorry I never followed up.
I was intending to write a long explaination about my experience with the VEEG, but never got it done. Sorry about that. And now it's been almost two years since I posted, I'm really getting foggy on keeping track of time.
My father called the hospital room "the torture chamber", but the seizures started quickly, so I was back on my meds by noon the second day. Out of the hospital at noon the third day. Thank goodness! I'll keep it short though - results: Primary Generalized Idiopathic Myoclonic (secondary Tonic-Clonic), so surgery is not an option. This is one of the rarer types, supossedly there are only about 2-3 thousand in the US that has this type.
VNS is still an option, but I have have opted to avoid that at least for now. My epileptologist said "stop working", so I did go through the SSDI process. After SS lost my paperwork and med records four times (no kidding), I was finally approved for disability.
Only four meds will work for the type of Epilepsy : Clonpin (was on that for 13 years in the 80's/90's, have tolerance to it), Depakote (same thing, was on it for 15 years, developed tolerance), Zonagram (had a bad reaction to it - thought I was going to die), and Keppra - which I am still on, but only helps partially. Still have 2 - 6 a week. And I have Ativan as a rescue med - wish I'd had that made available to me decades ago.
As to the heart issues - I've had Echocardiograms, Nuclear stress test, etc etc, and am now on a beta blocker that's reduced the heart problems by about 2/3rds. Not perfect, but a definate improvement. Although I'm often light headed from the heart meds, along with being foggy and tired from the seizure meds.
Oh, and while the MRI didn't show anything, I am losing sensation on my right side. My neurologist says it would be caused by my brain or brain stem, but there's no evidence of damage to cause it. My right eye is also seeing more poorly, and my hearing deteriorating on the right side. It's becoming a bit annoying.
Hope everyone is managing alright these days.
Hello again ! Sorry I never followed up.
I was intending to write a long explaination about my experience with the VEEG, but never got it done. Sorry about that. And now it's been almost two years since I posted, I'm really getting foggy on keeping track of time.
My father called the hospital room "the torture chamber", but the seizures started quickly, so I was back on my meds by noon the second day. Out of the hospital at noon the third day. Thank goodness! I'll keep it short though - results: Primary Generalized Idiopathic Myoclonic (secondary Tonic-Clonic), so surgery is not an option. This is one of the rarer types, supossedly there are only about 2-3 thousand in the US that has this type.
VNS is still an option, but I have have opted to avoid that at least for now. My epileptologist said "stop working", so I did go through the SSDI process. After SS lost my paperwork and med records four times (no kidding), I was finally approved for disability.
Only four meds will work for the type of Epilepsy : Clonpin (was on that for 13 years in the 80's/90's, have tolerance to it), Depakote (same thing, was on it for 15 years, developed tolerance), Zonagram (had a bad reaction to it - thought I was going to die), and Keppra - which I am still on, but only helps partially. Still have 2 - 6 a week. And I have Ativan as a rescue med - wish I'd had that made available to me decades ago.
As to the heart issues - I've had Echocardiograms, Nuclear stress test, etc etc, and am now on a beta blocker that's reduced the heart problems by about 2/3rds. Not perfect, but a definate improvement. Although I'm often light headed from the heart meds, along with being foggy and tired from the seizure meds.
Oh, and while the MRI didn't show anything, I am losing sensation on my right side. My neurologist says it would be caused by my brain or brain stem, but there's no evidence of damage to cause it. My right eye is also seeing more poorly, and my hearing deteriorating on the right side. It's becoming a bit annoying.
Hope everyone is managing alright these days.