age at diagnosis? anyone over the age of 35 when diagnosed?
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I was dx'd with epilepsy at 18 months old. So having epilepsy is all my life has been about. Im sure there are others on CWE who have been dx'd around that age or later. I dont remember alot of the seizures during my youth days, I recall alot during my elementary days, starting at around 3rd or 4th grade.
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I started having seizures and diagnosed with epilepsy when I was 26. I actually think it took more time for my family to get used to me having them than it did for me. Usually when I have a seizure I blank out so I don't know I've had it but who ever is around me sees me have it.
At first I was having maybe 3 seizures a week so every few days we would just say 'It's about time for a seizure'. Knowing one was on it's way made it a little better to handle, not much but some.
Once we found a good doctor who was working around with different meds to help with the frequency of the seizures started to help then it seemed to help alot more. I got down to around 5 a month.
Now, 8 years later, I'll have about 3 a month. Alot of times we know when there is a seizure on it's way because of something that had happened in my life that may trigger it. Something that is very upsetting, for instance I had to put one of my cats down, we just knew that seizure was coming. Sure enough 2 days later it was there.
Other triggers seem to be having a really good time doing something. We've gone to alot of concerts, there's no strobe lighting or anything like that (lighting has never been a trigger for me) but I may be dancing and singing, a day or so later there's that seizure.
Over exertion is another thing. If I have to get up pretty early in the morning and do alot during the day, not getting my nap in the afternoon could cause one. I went Black Friday shopping all day and had a seizure the next day.
Sometimes we might say "You know it's been about 3 weeks since you've had a seizure" (which is a pretty long time for me). I don't know if by saying that jinx's me but one is there with in the next few days.
Alot just pop up out of no where but sometimes knowing that one is on it's way makes it a little better.
Getting used to having them is not just something that is going to happen over night. It's going to take some time. I think once my family got used to me having them that helped me alot. How long have you had epilepsy? Do you have anyone close to you that helps you deal with them?
At first I was having maybe 3 seizures a week so every few days we would just say 'It's about time for a seizure'. Knowing one was on it's way made it a little better to handle, not much but some.
Once we found a good doctor who was working around with different meds to help with the frequency of the seizures started to help then it seemed to help alot more. I got down to around 5 a month.
Now, 8 years later, I'll have about 3 a month. Alot of times we know when there is a seizure on it's way because of something that had happened in my life that may trigger it. Something that is very upsetting, for instance I had to put one of my cats down, we just knew that seizure was coming. Sure enough 2 days later it was there.
Other triggers seem to be having a really good time doing something. We've gone to alot of concerts, there's no strobe lighting or anything like that (lighting has never been a trigger for me) but I may be dancing and singing, a day or so later there's that seizure.
Over exertion is another thing. If I have to get up pretty early in the morning and do alot during the day, not getting my nap in the afternoon could cause one. I went Black Friday shopping all day and had a seizure the next day.
Sometimes we might say "You know it's been about 3 weeks since you've had a seizure" (which is a pretty long time for me). I don't know if by saying that jinx's me but one is there with in the next few days.
Alot just pop up out of no where but sometimes knowing that one is on it's way makes it a little better.
Getting used to having them is not just something that is going to happen over night. It's going to take some time. I think once my family got used to me having them that helped me alot. How long have you had epilepsy? Do you have anyone close to you that helps you deal with them?
huskymom
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I was about 45 or so when I started having seizures. Most of them are nocturnal so I am unaware of them until I wake up and can't function. Mine are caused by malnutrition. I am anorexic and got down to 86 pounds (not too smart). Now I have 3 lesions. Who knew, right? Anywho, I don't let it bother me. Mine are hit and miss, no real triggers per say. At least I gained the weight back 
elizzza811
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I was diagnosed at the age of 46 (this year), but in retrospect I've likely been having seizures for decades. I've been having atonic seizures for as long as I can remember (age 12?) and same thing with the periodic 'dizzy spells' (teens) which I now know are seizures. Like with huskymom, many of my seizures were nocturnal, so I was unaware. I also grind my teeth at night and have been doing this since since...?...birth pretty much. A lonnng time!
Also, as with huskymom, I did deal with some pretty serious anorexia as a teen. I weighed 78 lbs in 7th grade, 81 lbs in 8th grade, and only 84 lbs in 9th grade - and I'm 5'4". Strangely enough, my anorexia disappeared on its own by 10th grade. I also had pretty severe OCD as a teen and it continues to worsen, so my OCD today is beyond crippling.
No doctor is ever going to convince me that my anorexia nervosa (of the past), anxiety, and OCD are 'mental' illnesses. They are caused by the misfirings of my seizuring brain, possibly even damage caused by these undiagnosed seizures. It still burns me up that they keep pushing behavior therapy on me. If I had cardiac arrhythmias, would they send me to a psychologist to learn how to control that? And if so, how frustrating would it be for the arrhythmia sufferer to find that they couldn't get a handle on it? Sorry I got off the topic there. Just frustrated...
Also, as with huskymom, I did deal with some pretty serious anorexia as a teen. I weighed 78 lbs in 7th grade, 81 lbs in 8th grade, and only 84 lbs in 9th grade - and I'm 5'4". Strangely enough, my anorexia disappeared on its own by 10th grade. I also had pretty severe OCD as a teen and it continues to worsen, so my OCD today is beyond crippling.
No doctor is ever going to convince me that my anorexia nervosa (of the past), anxiety, and OCD are 'mental' illnesses. They are caused by the misfirings of my seizuring brain, possibly even damage caused by these undiagnosed seizures. It still burns me up that they keep pushing behavior therapy on me. If I had cardiac arrhythmias, would they send me to a psychologist to learn how to control that? And if so, how frustrating would it be for the arrhythmia sufferer to find that they couldn't get a handle on it? Sorry I got off the topic there. Just frustrated...
violetopia
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I was diagnosed at age 38, just two months after my complex partials started, thanks to a good neurologist who listened to & believed me regarding my symptoms. He has done a great many tests to find the cause, no luck. My brain MRI came back normal, for example.
I have tried to think back over time about whether maybe I was seizing before then and just not realizing it, but not as far as I know.
I have tried to think back over time about whether maybe I was seizing before then and just not realizing it, but not as far as I know.
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I was finally diagnosed with epilepsy at age 23, after having CP that increased to TC seizures. That was 31 years ago and after trying many drug treatments, surgery and the VNS therapy, the seizures are beginning to wane for me. Now I suffer memory loss and aphasia, due to the brain surgery, something I'll never get used to. Others often say to me, "you look normal". What the hell is normal anyway?
petero
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>>Alot of times we know when there is a seizure on it's way because of something that had happened in my life that may trigger it. Something that is very upsetting, for instance I had to put one of my cats down, we just knew that seizure was coming. Sure enough 2 days later it was there.<<
I think I have a hard time on myself believing I _HAVE_ epilepsy because a) I'm not "there" when it happens b) triggers
I guess it's hard for me to see this in terms of something like the flu, of causality. If such and such occurs, then it's likely a seizure will occur.
It doesn't make sense to me logically.
I guess I see epilepsy incorrectly in terms of a mental disorder of some sort, like Down's syndrome.
For example,
a) if you forget to wash your hands you might get the flu.
b) If you forget to wash your hands you won't get Down's syndrome.
I guess it's hard for me to see epilepsy from a causal origin, because it's a neurological origin, because it is emotion and attitude related, because it is not even really of clear origin...
it's like catching a case of the bad vibes or something??
did I remember to take my bad vibe medication??
did I remember to wash my hands of bad vibes??
lol :-/ ??
maybe I'm too logical and too hard on myself.
I sure know it happens - it exists - am I too cynical? too critical even on myself?
it feels like telling someone else I've seen a UFO when it happens - although who I'm telling has observed more of the UFO than I have, but, like, I actually got to pilot the UFO.
"yeah yeah - I know I know - I saw the UFO... sure sure - you were piloting the UFO... alright already..."
not a good feeling - I guess I'm more skeptical of UFOs than those witnessing ...
I guess I myself am skeptical that epilepsy is a disease
I have it
I've never "seen" myself have it - but I have seen myself teleport from place to place - other people try to discredit my accounts of teleportation by trying to convince me I've been unconscious, blue, cold to the touch, sweaty, clammy, rigid-solid, being transported by ambulance- etc.
utter nonsense - I can teleport
I think I have a hard time on myself believing I _HAVE_ epilepsy because a) I'm not "there" when it happens b) triggers
I guess it's hard for me to see this in terms of something like the flu, of causality. If such and such occurs, then it's likely a seizure will occur.
It doesn't make sense to me logically.
I guess I see epilepsy incorrectly in terms of a mental disorder of some sort, like Down's syndrome.
For example,
a) if you forget to wash your hands you might get the flu.
b) If you forget to wash your hands you won't get Down's syndrome.
I guess it's hard for me to see epilepsy from a causal origin, because it's a neurological origin, because it is emotion and attitude related, because it is not even really of clear origin...
it's like catching a case of the bad vibes or something??
did I remember to take my bad vibe medication??
did I remember to wash my hands of bad vibes??
lol :-/ ??
maybe I'm too logical and too hard on myself.
I sure know it happens - it exists - am I too cynical? too critical even on myself?
it feels like telling someone else I've seen a UFO when it happens - although who I'm telling has observed more of the UFO than I have, but, like, I actually got to pilot the UFO.
"yeah yeah - I know I know - I saw the UFO... sure sure - you were piloting the UFO... alright already..."
not a good feeling - I guess I'm more skeptical of UFOs than those witnessing ...
I guess I myself am skeptical that epilepsy is a disease
I have it
I've never "seen" myself have it - but I have seen myself teleport from place to place - other people try to discredit my accounts of teleportation by trying to convince me I've been unconscious, blue, cold to the touch, sweaty, clammy, rigid-solid, being transported by ambulance- etc.
utter nonsense - I can teleport
Lunamoth79
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I just recently began having seizures, at 32 years. They started with these cascading visions that I can only describe as "other people's dreams". The weirdest experience ever. The first time it happened, I was talking with a friend at work and all of a sudden I almost saw these very vivid visions of something I cannot recall, but which was so vivid I could almost see/hear/taste it at the time, followed by my vision fading to white, then returning and all was well. It came over me so suddenly and I had no idea whatsoever what it was, would put me into a strange state for about an hour or so afterwards. This happened multiple times over a few weeks, I started to think the visions were trying to tell me something, and then I had an actual grand mal seizure and realized fully what was happening. I'd had my suspicions, but then it happened where I was on my couch one moment, and in my bed the next moment,,,only it was 45 minutes later.
All of my life I have felt psychic intuition, deja vu, and have always been told by others that I have an extra perception. From reading these threads and other articles, I am pleasantly surprised to find that this is a commonality among alot of folks who suffer seizures. This, with the fact that the docs can't tell me what is wrong with me, all the tests come back normal, and learning that there is so much that we still don't know about our minds and their illustrious activities, I can't help but think that these extra perceptions are linked to the seizures.
petox1970, I believe you can teleport. I believe our minds are capable of so much more than we can even believe or comprehend, and seizures can be somehow related to this. When they are not related to any other malady that can be detected, why do they occur? Is it because energy is everywhere, and we are the superconductors? This sounds so silly, and I would have never put these thoughts out there in any observable fashion, even within the anonymity of the internet, had I not seen these ideas put forth by others on here. Let me say, I was pleasantly surprised.
All of my life I have felt psychic intuition, deja vu, and have always been told by others that I have an extra perception. From reading these threads and other articles, I am pleasantly surprised to find that this is a commonality among alot of folks who suffer seizures. This, with the fact that the docs can't tell me what is wrong with me, all the tests come back normal, and learning that there is so much that we still don't know about our minds and their illustrious activities, I can't help but think that these extra perceptions are linked to the seizures.
petox1970, I believe you can teleport. I believe our minds are capable of so much more than we can even believe or comprehend, and seizures can be somehow related to this. When they are not related to any other malady that can be detected, why do they occur? Is it because energy is everywhere, and we are the superconductors? This sounds so silly, and I would have never put these thoughts out there in any observable fashion, even within the anonymity of the internet, had I not seen these ideas put forth by others on here. Let me say, I was pleasantly surprised.
Petox,
My first seizure was just before my 40th b-day. We are so alike it is not funny!! Lol! I can hear the peoples around me thoughts just before and it is not alway nice things that are in there minds. I read one of your other post and I think I have seen you on the way to the moon myself. It is possilbe!! I had my second one after watching my cat get mauled by a big dog that ripped through the screen on my porch. I never cried so hard in my life.
I believe we all can teleport OBE and so on. I is said we go out of our bodies well we sleep to other places we just don't remember them. Well I do. I enjoy my travels very must and it is a cheap vacation never have to pay airfair. Lol!
Lot of Love,
LW
My first seizure was just before my 40th b-day. We are so alike it is not funny!! Lol! I can hear the peoples around me thoughts just before and it is not alway nice things that are in there minds. I read one of your other post and I think I have seen you on the way to the moon myself. It is possilbe!! I had my second one after watching my cat get mauled by a big dog that ripped through the screen on my porch. I never cried so hard in my life.
I believe we all can teleport OBE and so on. I is said we go out of our bodies well we sleep to other places we just don't remember them. Well I do. I enjoy my travels very must and it is a cheap vacation never have to pay airfair. Lol!
Lot of Love,
LW
petero
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hi LW -
I've considered this phenomenon and at the very least (to anyone reading this who is very skeptical of these ESP type of phenomenon) I could say these might be a hypersensitivity to things like tone of voice, kinesthetics, body posturing, etc. of people -
if anyone thinks someone does not express emotion through non-verbal 'vocalizations' they are an idiot - period
the entire fashion industry is based on this phenomenon
dance, the arts
singing attenuation can be expressive far beyond simple verbalizations
just compare the tone of a computerized voice to a human voice
these innuendo and nuances are not just vocal
they are kinesthesiological (is that a word?), expressive visually, etc.
I find it impossible to think that there are _not_ some already hypersensitive to these phenomenon (myself included) and that the human brain can become altered to make one even more sensitive to these phenomenon
(which to one uninitiated to said sensitivity could become "shouting", "voices", etc.) what's the word... synaesthesia
people say garish clothing can be "loud" - ... if you don't think so, then you need to watch more Telemundo
I pity the fools who are so dead-brained as to be ignorant or close-minded to this phenomenon and to immediately dismiss the prospect of "ESP" or combining stimulus input into a more overall enriching and revealing phenomenon
I hear people's thoughts all of the time
I can even still hear Beethoven's thoughts - and he has been dead for centuries!
I see people's thoughts - I smell people's thoughts - even from thousands of miles away... people I've never even met!
:mrt:
petero
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what are TBIs?
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My seizures (tonic-clonics) started about a month before my 35th birthday.
I think I got used to them after a few years. Once I realized that I couldn't ever remember what happened during any particular seizure, that seemed to help. (If I wasn't "there" then I didn't feel bad about it happening.) My seizures can be controlled by meds, which no doubt makes a big difference in how I feel about them. I've been seizure-free for almost 4 years, knock on wood...
I think I got used to them after a few years. Once I realized that I couldn't ever remember what happened during any particular seizure, that seemed to help. (If I wasn't "there" then I didn't feel bad about it happening.) My seizures can be controlled by meds, which no doubt makes a big difference in how I feel about them. I've been seizure-free for almost 4 years, knock on wood...
kristol_winter
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I havent gotten used to them..
I was diagnosed today 4yrs ago
I was diagnosed today 4yrs ago
petero
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I've had my share of those since childhood
but in retrospect I'm not sure if I could have had absence/petit/partial/simple/blah blah blah since I was a kid
I don't know
maybe
observed tonic clonics since 2008 though
Petox,
I hear people's thoughts all of the time
I can even still hear Beethoven's thoughts - and he has been dead for centuries!
I see people's thoughts - I smell people's thoughts - even from thousands of miles away... people I've never even met!
I don't know if I would want to smell them! Lol!
Lot's of love,
LW
I hear people's thoughts all of the time
I can even still hear Beethoven's thoughts - and he has been dead for centuries!
I see people's thoughts - I smell people's thoughts - even from thousands of miles away... people I've never even met!
I don't know if I would want to smell them! Lol!
Lot's of love,
LW
HI Everyone,
I was diagnosed sometime when I was in grade 6. When I was 13 1/2 my gp (not my neurologist) figured out what meds would work for me. I had been hit on the head, and that is what caused it.
I just learned from elizzza811 (thank you , elizzza811) that the dizzy spells I had in high school were actually seizures. I was always told they were not. sigh I am a married women with two children now. Something my neurologist at the time said would be impossible for me. This is one time I am glad she was not correct. I do still take meds, but am concerned as primidone is hard to get now.
lavatera
I was diagnosed sometime when I was in grade 6. When I was 13 1/2 my gp (not my neurologist) figured out what meds would work for me. I had been hit on the head, and that is what caused it.
I just learned from elizzza811 (thank you , elizzza811) that the dizzy spells I had in high school were actually seizures. I was always told they were not. sigh I am a married women with two children now. Something my neurologist at the time said would be impossible for me. This is one time I am glad she was not correct. I do still take meds, but am concerned as primidone is hard to get now.
lavatera
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