Medical Forum / Diseases and Disorders / Epilepsy / February 2008
Just been told I have seizures
|
|
Thread rating:  |
Jason - 30 Jul 2007 01:53 GMT Hey Group,
This is the first time I have posted here. After years of strange attacks, I've been told by my Doctor that I have "seizure disorder."
I have mixed feelings abot it. Not sure if I believe it or not. But here is what happens.
It always starts the same way. I get a burning sensation in the back of my neck and upper back. Sometimes, for some strange reason, I smell strong bug spray. Than comes the lightheaded, almost floating feeling. Lots of visual distorations. I get sick, feel like I'm going to pass-out. Next is just blank. No memory of the peak of the attack, or just bits of memory that contradicts what my wife sees when these happen. The peak of these attacks last 3 to 5 minutes. The longest one lasted about 10. After the attack is over, I'm confused and have fatigue.
My Doctor suspects Complex Partial Seizures. What do you guys think?
Thanks, Jason
G. - 30 Jul 2007 03:52 GMT > Hey Group, > [quoted text clipped - 18 lines] > Thanks, > Jason Strong acrid odour (aura) is usually a marker for Left Temporal Lobe seizure focus (where the szr starts from). Newer term for Temporal lobe szrs. is now Complex Partial if you do any searches. Several of the websites or search areas still keep Temporal Lobe seizures as well as the CP ones. Try look at the U.S. Ep. foundation site -- http://efa.org and see if there's any detail there that might help. Also if you were prescribed medications yet, there's a Glossary there that will often tell what type of szrs. the medication is typically targeted for. (My szrs. are Right T.Lobe so I started with Dilantin, then Tegretol CR (controlled release) and Clobazam (Frisium). Left T. Lobe might use some different medications, as I'm not familiar with that area.) Did the Dr. suggest whether you should get a Medic Alert or similar bracelet? If these happen without a lot of warning or you're disoriented while they happen that would allow Doctors or respondents to know 1) what's happening, and 2) what medications you use so they don't give you something that would conflict with it. The file also keeps a list of up to 3 Medical (Doctor) contact numbers, plus up to 3 Family contacts. It's a small price to pay for some extra insurance or peace of mind if these are not controlled yet. (About $40 one time cost for the bracelet, other amounts later if you want are tax deductible in some countries. You don't usually have to pay again when the annual 'update your records' notice is sent out-- that's just to make sure you didn't change medications or doctors and forgot to let them know for their files.) G./ (I'll see if I can find an older post I did with about 5 other websites and post it separately below. There is more detail on First Aid plus other information on szr. types than what's just on the EFA site. )
Sofia - 31 Jul 2007 23:14 GMT > Try look at the U.S. Ep. foundation site -- http://efa.org and > see if there's any detail there that might help. Also if you were [quoted text clipped - 6 lines] > Did the Dr. suggest whether you should get a Medic Alert or > similar bracelet? Strange that, I didn't know there actually was a difference between the two personally!
My neurologist even suggested I wore a type of choker type thingy around my neck (a little like this bracelet thingy you describe) 24 hours a day to study my TC's and Tonic's mostly, and I don't even have auras during any of my seizures - I declined though, as I felt it would make me feel like a doggy with a lead on!!
Sofie
 Signature Please visit my deviantART page: http://sofen.deviantart.com/
Ron Laffey - 02 Aug 2007 02:02 GMT > My neurologist even suggested I wore a type of choker type thingy around > my neck (a little like this bracelet thingy you describe) 24 hours a [quoted text clipped - 3 lines] > > Sofie One day I had a seizure while waiting to take the bus home from college. I would normally walk to my house, but being on the other side of the city, I (so I'm told) attempted to walk into an older person's home and she called the police.
Because I ignored the officer and worked to open the front door, he had to use force to take control of me(have you ever tried to control someone having a petit mal?). Luckily, he saw my necklace and completely changed his method. For that reason, there were no bruises, on either of us.
Don't compare it to a doggy with a lead on, but as an unmarked car with a siren that is only used when necessary.
Ron
Sofia - 05 Aug 2007 01:03 GMT Hi Ron, nice meeting you!
> One day I had a seizure while waiting to take the bus home from > college. I would normally walk to my house, but being on the other > side of the city, I (so I'm told) attempted to walk into an older > person's home and she called the police. Ouch - that really is unfortunate. The only times I go walkies doing naughty things I shouldn't are usually during my Complex Partials. During my petit-mals I usually just stand/sit rigidly and stare into space with hubby close by me, but we're all different I suppose.
> Because I ignored the officer and worked to open the front door, he > had to use force to take control of me(have you ever tried to control > someone having a petit mal?). Luckily, he saw my necklace and > completely changed his method. For that reason, there were no bruises, > on either of us. I'm surprised this policeman recognised it as a disabled persons necklace - it's a very new thing here in England, I'd never even heard of it myself till my neuro introduced it to me at our last meeting to monitor my seizures!
Maybe I'm one of the lucky people that seems to go everywhere now with my husband by my side when we go out, so I never ever end up trying to walk into anybody else's home without him knowing about it - it's a shame you didn't have a friend or carer perhaps with you on that day the police came!
Maybe the reason I'm comparing it to a doggy lead and not an unmarked car with a siren, is the same reason that I've never heard of it till recently - perhaps I should get to know a little more about it before I consult my neuro again!!
Sofie
 Signature Please visit my deviantART page: http://sofen.deviantart.com/
J. T. Laurie - 09 Aug 2007 12:26 GMT I'd love to get a necklace but I'm not allowed. even though a very competent doc diagnosed me with epilepsy and even upped my meds a little to accomodate, the family said he was wrong and that they wouldn't get the medication redone to accomodate the new dosages. bastard!
> Hi Ron, nice meeting you! > [quoted text clipped - 31 lines] > > Sofie G. - 09 Aug 2007 19:16 GMT > I'd love to get a necklace but I'm not allowed. even though a very competent > doc diagnosed me with epilepsy and even upped my meds a little to > accomodate, the family said he was wrong and that they wouldn't get the > medication redone to accomodate the new dosages. bastard!"Sofia" **G* I don't understand above ?? Your Dr. prescribed (or suggested) a pill that **could control your Seizures, but your *family have medical training? Before my CPs were controlled I got on buses I didn't belong on, walked into traffic (on foot) while there were cars coming, and threw a Security Guard about 5 feet (I'm told) like he was a rag doll. Why wouldn't I want to get that controlled before I injure myself or others? (It is now, and has been since 1997. I wouldn't relive 1993-6 for *anything.) Just my opinion. G./ (Comment at end too.)
<pinkmonster2000REM...@ALLCAPSyahoo.com> wrote in message
> news:46b513c5$0$24760$da0feed9@news.zen.co.uk... > [quoted text clipped - 33 lines] > > Sofie > > -- G.-- Another thing I forgot on my Reply above to Sofie, is the Medic Alert computer file that Medics can call Collect, lists what Pills you are using (not doses as those can change). *That way a Medic doesn't give you something to 'fix you' that conflicts with Pills you are using.
Sofia - 10 Aug 2007 02:06 GMT > Before my CPs were controlled I got on buses I didn't > belong on, walked into traffic (on foot) while there were cars coming, > and threw a Security Guard about 5 feet (I'm told) like he was a rag > doll. Nice to hear somebody's gotten rid of the blasted nuisances!!
If I'm out with hubby walking down the street and he just turns his back for one second I've had one and bumped straight into lamposts or walked into the middle of streets and been knocked over, and I can't count how much trash I've taken from supermarket shelves and stuffed into my pockets that neither of us knew about till we got home!!
Sofie
 Signature Please visit my deviantART page: http://sofen.deviantart.com/
Rev21-4 - 11 Feb 2008 21:37 GMT I experience strange pungent smells. Sometimes like sulpher. Sometimes lovely scents, like fresh roses! I like the roses much better.
-- Message posted using http://www.talkaboutsupport.com/group/alt.support.epilepsy/ More information at http://www.talkaboutsupport.com/faq.html
G. - 12 Feb 2008 05:35 GMT > I experience strange pungent smells. Sometimes like sulpher. Sometimes > lovely scents, like fresh roses! I like the roses much better. > -- > Message posted using http://www.talkaboutsupport.com/group/alt.support.epilepsy/ > More information at http://www.talkaboutsupport.com/faq.html The pungent (sulphur-like?) aromas are supposed to be the aura of a Left Temporal Lobe seizure focus (where it starts). Right Temporal Lobe ones are often lemony or sour with matching taste. (Those are ones I had before I got control of my szrs. I don't miss that lemon taste at all, but avoid even 'normal' drinks that are sour like that now.). G./
G. - 02 Aug 2007 04:57 GMT On Jul 31, 6:14 pm, Sofia <pinkmonster2000REM...@ALLCAPSyahoo.com> wrote:
> > Try look at the U.S. Ep. foundation site --http://efa.org and > > see if there's any detail there that might help. Also if you were [quoted text clipped - 16 lines] > me feel like a doggy with a lead on!! > Sofie For those of us who get auras and they're from T.Lobes, the right side Seizure Focus produces a Deja Vu sensation and taste or aroma like lemon or sourness. Left T.Lobe (I don't have) supposedly produces a Jamais Vu aura (where your own place might feel like a stranger's house), and the Aura is Eggy or Sulphur-like taste or aroma. Those (when they occur) are a non-invasive way of telling which T.Lobe a szr. starts from. Some people here (a few years ago) had Complex Partials or Tonic Clonics that started from either (both) sides, so they experienced both types, sometimes one, sometimes the other. Sometimes too, if the szrs. aren't controlled, they can generalize to grand mal or other type of szrs. once they progress. (Before I got controlled when mine did that I'd usually lose consciousness and wake up on the floor or in hospital. That's how I could tell that some of the pills were giving more complete control, as they moved to Auras (like above), but didn't progress to stronger szr. type. (The Temporal lobes are like the short-term memory buffer of the brain. New learning or what we read goes there first, then gets moved to other areas for long term storage or discarded. Damage there (like I have) can affect reading and remembering what was read, or new learning. I noticed it most (before control, aging) learning how to use this (*&^ computer when the screen would move on, and I'd not recall what was on the screen (window) I had just left.) G./
G. - 09 Aug 2007 19:04 GMT On Jul 31, 6:14 pm, Sofia <pinkmonster2000REM...@ALLCAPSyahoo.com> wrote:
> > Try look at the U.S. Ep. foundation site --http://efa.org and > > see if there's any detail there that might help. Also if you were [quoted text clipped - 18 lines] > -- > Please visit my deviantART page:http://sofen.deviantart.com/ I don't know what that would be, but I'd assume some kind of recorder instrument? to measure blood pressure or electrical firings as any of your szrs. started? That would have been something (he should have explained?) that you'd only wear for 1-2 weeks to decode the frequency and szr. type that might have been happening-- similar to a portable EEG. (They usually want to know what the szr. type is as the type of treatment and pills that would work for 1 szr. type won't necessarily be any help for another type. You could have worn a high collar sweater or other thing while the test was running. I hadn't heard of that type of instrument over here/ Canada, so might be something new. )
Medic Alert in North America sell either necklaces or wrist bracelet (I use) that list their Toll Free number for Medics to call, with the Member number. Their computer file then has Emergency Family contacts, Doctors who are treating you and numbers, and more details. The bracelet *I use says Seizure Disorder, Allergic to Seafood, Blood Type xx, and the toll free Medic Alert number. (Doctors can call *collect from *anywhere in the world, Australia, China, UK, Italy etc. no matter where you are, and get 24 hour access to your file. For $35. one time cost, it's pretty cheap insurance for people who have various Chronic Illnesses that could affect their consciousness -- heart conditions, epilepsy, and other medical conditions. (Lately they also sell a cloth Sports Wrist Band (for kids in one of 4 colours) that has the bracelet imbedded in it, so it looks like a Sweat Band to other kids. I only know it's for kids since I wanted a Blue one, and she told me ~4 years ago they don't come in Adult size. :-< ) Both the Necklace and Wristband have a Safety Link on each side that will Pop Free if the bracelet or necklace were to get caught on anything, to prevent injury. *That's the part that wore out on mine after about 5 years. That was the only reason I had to re-order one. There are sterling silver and Gold ones for much more money, but it would still need to be replaced like above after about 4+ years, so at $300 that doesn't make it very attractive for long term use. G./
|
|
|