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Medical Forum / Diseases and Disorders / Epilepsy / October 2005Can I have some feedback please?
I went to my neuro yesterday and was kind of just checking in with him.I told him about something that has happened a few times and he says that they are simple partial seizures.This is what I did.I was getting ready for work one day and i just felt weeeeeeeeeeeird.I felt like i was seeing the room the first time but i knew exactly where i was and what everything was.Then the room had a weird yellow color,and i got very emotional. At the same time i have migraines and sleep apnea( i cant tell you how sometimes i fear i wont live to be old). Now i have been on seizure meds (trileptal 600mg 2xs a day) for over 2 years and never really remember having this happen.Does this mean my epilepsy is gettng worse? He is going to set up a portable EEG machine for me to wear for 48 hours.What will this do ? and has anyone here done it before? Will it get in the way of work? Thanks for listening, i know you guys arent doctors but alot of you know a good bit and i wanted some thoughts. thanks P >I went to my neuro yesterday and was kind of just checking in with him.I > told him about something that has happened a few times and he says that [quoted text clipped - 3 lines] > one day and i just felt weeeeeeeeeeeird.I felt like i was seeing the room > the first time but i knew exactly where i was and what everything was. ** Above sounds like it might be Jamais Vu feeling (never seen, where familiar surroundings to you can feel strange) if a seizure (possibly simple partial) starts in the *left temporal lobe. You might find references if you do searches on Temporal Lobe seizures (older name) or Simple Partial or Complex Partial seizures (the latter usually ends in loss of consciousness, so try SP first on searches). The SP is usually also listed as an Aura on some sites, if you haven't looked there either. Had you used either Food or other vitamins etc. that were *new ahead of those feelings? Some types of things (like alcohol, or certain foods) might interfere with balance of a medication we are using, and during the period it gets below our therapeutic level, can allow SP szrs. to operate. (I would have expected those to have turned up in the last 2 years you've been using medications if they were going to happen, but perhaps the med. dose you've used is starting to not be fully effective.) I've never used trileptal, so we'll have to wait for someone who has to show up, to see if there are other things that might interfere with it. (If I find an older post I did a few months ago listing some websites I use, I'll add it as a separate sub-note after this one. ) More below at **s. Then > the room had a weird yellow color,and i got very emotional. *** Heightened emotions usually arise from the temporal lobes, so far as I know, more than some other areas of the brain? The Apnea you describe next might be seizures you are having at Night? that you aren't fully aware of. Those would mess up sleep patterns and ability to rest properly, and our guards are lower during normal sleep, so some of what you were experiencing could be minor szrs. during the night. / > At the same time i have migraines and sleep apnea( i cant tell you how > sometimes i fear i wont live to be old). [quoted text clipped - 6 lines] > it > get in the way of work? *** I haven't had this but others posted about those earlier this year or last year. Hopefully they still read the group. One version, so far as I know, you are admitted on a Friday evening, and remain in the hospital over the weekend with the Portable Device wired to you. It records activity in the brain as you read, or wander about the hospital for the 48 hours. *I'm not aware of one you can take home, but since I haven't had this, there could be one now that you'd be able to. So far as I know the probes are pasted onto about 20? spots around the top of your head, so I would expect they'd install it at the hospital, and it would seem that it would be easier to wander around there with this attached than e.g. travelling on a bus, going shopping for groceries etc. (I'll add the other newsgroup post shortly. Have a look at either the medication you currently use under the efa site to see if any symptoms are listed you've just had. Or look at the Idaho First Aid site that describes what we 'feel' during various szr. types, and see how those might match what you are currently experiencing. Those might indicate whether the type of szrs. you are having are still the same, or whether e.g. you might be having the odd szr. that is currently beyond the current level of medications you are using. (I expect that is part of what they want to find with the tests you described above.) G./ // > Thanks for listening, i know you guys arent doctors but alot of you know a > good bit and i wanted some thoughts. > thanks > P >I went to my neuro yesterday and was kind of just checking in with him.I > told him about something that has happened a few times and he says that [quoted text clipped - 19 lines] > thanks > P This is the older post I did about 3 weeks ago, listing some websites that turn up here on this group from time to time --> "G.Ross" <> wrote in message news:aeadnVOOPufE34feRVn-vw@rogers.com... > I did a post about 2? weeks ago where I listed some websites I'd found > along my travels. This is one older post I did with some websites mentioned on this earlier site. --> The main Idaho Epilepsy News site is at http://www.epilepsyidaho.org . Within that are links that also go through an Education area called Learn about Epilepsy -- at http://www.epilepsyidaho.org/learn.htm. Often some *symptoms people **exhibit give clues to *type of seizures they're having and best described on a First Aid for Seizures Chart. These are my favorites -- also from Epilepsy Idaho. One is http://www.epilepsyidaho.org/seizure2.htm and that links to http://www.epilepsyidaho.org/seizure.htm . One of those is easier to print, although both display well for information or reference. There is also a separate page for First Aid in Water I didn't include, although those sites might link to it. What to do when someone in swimming is somewhat different that if they were to collapse 'on land'. Howdy Dave has a site he put together ~10? years ago and he regularly updates. He was also one of the oldest :-< members of this group and someone told me he was one of the Founders too. Most people don't know that, so he doesn't get a swelled head or anything.. :-> His site is at http://www.howdydave.com . / > I have a few sites I used to post but they're not handy at the moment > and I'll be offline shortly. The main U.S. Ep. Foundation website is at > http://efa.org . THIS SITE Has a Medication Glossary, although I found > my own pharmacist a useful source of information if I had Side Effects or > Questions about using a particular prescribed pill. // G./ >I went to my neuro yesterday and was kind of just checking in with him.I > told him about something that has happened a few times and he says that [quoted text clipped - 19 lines] > thanks > P Hi, I've had epilepsy for 31 years now and I've found that sometimes things change without warning - not necessarily worsen, just change. The nature of my seizures has changed a number of times, sometimes they've got worse and sometimes better, just "different" for no apparent reason. I had a 48 hour EEG about five years ago. It's much as Gordon describes. They put electrodes on your head - approx 15 to 20 or so, with wires attaching them to a machine on a stand with wheels on (much like a portable drip). Obviously this machine is too expensive and isn't suitable for taking home with you, so you stay in hospital for the weekend (or whatever days you're having the test). Well this is the way it's done here in New Zealand anyway. I've never had trileptal as far as I'm aware - unless it's called something different here (entirely possible - we don't like to conform, for some reason), so I don't know if that's something which may have caused the experiences you had, but I doubt it. Hope this helps. Darryl. G. Ross and Darryl, thank you for your feedback .I am going to read through it all when i can sit down for awhile.I am not looking forward to checking into a hospital but maybe it will give us some answers.. thanks P > G. Ross and Darryl, thank you for your feedback .I am going to read > through > it all when i can sit down for awhile.I am not looking forward to checking > into a hospital but maybe it will give us some answers.. > thanks > P Like Darryl said, the type of equipment is like a portable recorder, and after they get the paste and 'pins' in place at about 10 or 12? spots, they don't want those to come out, as they might if you were out shopping or at home. So far as I know, there is nothing significantly 'gross' you might associate with hospital stays. I don't even think they do a blood test unless the Dr. has called for it. The paste stuff leaves little marks in your hair like plaster dabs might, but those wash out with little trouble after the tests. Those are there just to keep the pins secure, and sterile, and the leads measure internal electrical signals from different areas of your brain from *outside your skull without needing any cutting or stuff that *I'd consider gross... The older style EEG (I had) depended on my lying immobile while wired up, so if I didn't have any szr. activity during my type of test, they wouldn't know which area of my brain the activity started from (the seizure focus). The area where the szrs. start gives clues to the area where there could be damage, but more importantly many of the newer meds. are targeted and work best for some types of szrs. but might not for other types. When they determine which type you have, they can best set the med. and dose level that will most likely work for you. Keep us posted how things turn out. *Lots of other people read this group, even if they're too shy to post. So new information you can add helps our data base of experiences, that others can benefit from. / G. >> G. Ross and Darryl, thank you for your feedback .I am going to read >> through [quoted text clipped - 27 lines] > to post. So new information you can add helps our data base of > experiences, that others can benefit from. / G. Another thing they do is to deprive you of your meds for the time you're being monitored, in order to induce seizure activity. When I had mine done they got more than they bargained for.....I started having complex partials one after the other, with about 10 second's break in between. This went on for SEVEN hours during the night, before they could get hold of a doctor who could prescribe something to make them stop. (Some kind of suppository. Morphine I think). All the seizures really screwed my brain up and I lost it for about a week afterwards - no memory of anything that happened during that time or the following week and apparently I was just a zombie. But that's just me and the way I reacted to being taken off my meds. It's not the normal sort of reaction, or else they just wouldn't do it. It was very beneficial though, as they were able to pinpoint the exact location of the affected area of my brain and a while later I had surgery to have an area about the size of a golf ball removed. Great reduction in the numbers and severity of my seizures, though not a complete cure. Was still very worthwhile and I'd do it all again. Darryl. |
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