Medical Forum / Diseases and Disorders / Epilepsy / July 2005
need help for descriptions
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gomper - 08 Jul 2005 11:41 GMT Hi all. In a couple of weeks I'll be seeing my neuro again. One main difficulty I've been having over the years, is trying to describe the at least weekly minimal seizures (which I suppose it is), which once a year or so, become sort of magnified until it leads to a grand mal (I grew up with that term, so I'm still using it . . ). Off course, I can't expect anyone else to describe my own SPs/auras or whatever it is, but I've seen some postings that have been pretty close. Problem is, in my case we're often talking microseconds/half a second of these occurances, that's why I usually just realize "something" just happened. The descriptions I've found here so far, that seem pretty close, are: the feeling of having been suddenly scared, with a rush of adrenalin through the system, and also the feeling of being inside an elevator going upward in full speed and then a full stop. Besides these, I may also have a feeling of the opposite of the latter, like being in an aeroplane coming into an air pocket, dropping, and sort of leaving my brain up there. If anybody else here are having similar feelings, I'd be happy to hear alternative descriptions, and also what these experiences may be classified as (SP/aura etc).
PS: before having a GM, these feelings are getting gradually more distinct and more frequent, usually giving me time to get to bed or lie down. Normally, they don't bother me much, except being there as a (sometimes) constant reminder of what is bothering me.
PPS: they also occur more frequently when I'm tired and have to consentrate real hard, and sometimes (but far from always) when being stressed.
Sorry if this got a bit long . . . . .
Thanks a lot in advance, ole k
Beck - 08 Jul 2005 12:32 GMT I am one of the worst at describing my feelings. But if you check out the thread "Absences" that I started, there are some very good descriptions there from a few people. I found them helpful. Good Luck, Beck.
> Hi all. > In a couple of weeks I'll be seeing my neuro again. One main difficulty [quoted text clipped - 29 lines] > Thanks a lot in advance, > ole k gomper - 08 Jul 2005 12:48 GMT > I am one of the worst at describing my feelings. But if you check out the
> thread "Absences" that I started, there are some very good descriptions > there from a few people. I found them helpful. > Good Luck, Thanks a lot for your reply. I remember that thread (I've still got it, in fact) but it doesn't exactly hit the nail for me. Perhaps except your last remark, not being sure whether this has anything to do with the EP, or if it's just sort of anxiety attack.
bow, ole k
Beck - 09 Jul 2005 02:37 GMT Not that it will help you, but I have been given an increase of my medication (not the epilepsy one) a couple of times when this has happened and its helped. So I have been given the increase as of today as well. If it helps this time then I am not the person to ask because it will be obvious that my problem is not related to the epilepsy. I guess if your doctor doesn't understand when you describe in your own words, you can tell them that you are having trouble with wording your feelings and maybe they can try helping you out that way? My doctor seems to understand most of what I tell him, but he puts little bits in here and there and sometimes I am like "Yes, that's it!" lol. I don't know. I think I have started rambling. lol. Beck.
> > I am one of the worst at describing my feelings. But if you check out > the [quoted text clipped - 9 lines] > bow, > ole k Dave ©¿©¬ - 08 Jul 2005 14:54 GMT Howdy!
The description that you just gave sounds pretty good to me!
Don't depend on other peoples descriptions because everybody is different. Your own words, however inadequate, are much better then basing your description on someone else's seizures.
Seizures very often defy description due to the fact that they are not common enough amongst society for an adequate vocabulary to have been built about them.
 Signature Dave ©¿©¬
http://www.howdydave.com
> Hi all. > In a couple of weeks I'll be seeing my neuro again. One main difficulty [quoted text clipped - 29 lines] > Thanks a lot in advance, > ole k G.Ross - 08 Jul 2005 15:43 GMT > Hi all. > In a couple of weeks I'll be seeing my neuro again. One main difficulty [quoted text clipped - 28 lines] > Thanks a lot in advance, > ole k I'm going to paste below a note I put up each ~3 weeks so we're about due. I might have already posted this for you, or not. It describes some websites put up by people who post 'around here' but who've assembled a bunch of useful information for us. I think this doesn't list Howdy Dave's, but he has some recent posts on the group, and his website addr. is at end of his posts.
Check the 'symptoms or sensations' entry under the First Aid for seizures Chart (below). Also if you're 'losing awareness or finding strange writing' *you did, those *could be from a Petit Mal or Absence seizure, described there too. Others around you who witness any, may be able to tell you what you do while 'away' in a seizure, and whether you stay conscious or collapse.
I'm a Little concerned that *you have to describe your symptoms to your Doctor, although *I did that too.... Are you seeing a Neurologist? because if you are, *they should know most of these feelings or behaviours as markers of a particular seizure type, and that's used to determine which pills Will or Won't work for that type of seizure. The efa.org site has a Medications glossary where you can enter the name of any medications you're prescribed and it'll give you a one page Printable format you can compare with what you got from a Pharmacy with new prescriptions. Some pills have things to avoid while taking them. Under the main 'First Aid for seizures' site, some feelings/ auras we might get as part of each seizure is listed, that will help tell if they're among the common symptoms people often get. (The Deja Vu feeling, and sour or lemon taste / aroma I used to experience, or that would trigger a dizzy feeling for me, were 'Classic' auras for a Right Temporal Lobe seizure (now grouped under Complex Partials), and my Dr. already knew which types I had from the EEGs and MRIs they had already run when I was first in Hospital. ) This is the earlier post (parag.1 was written TO someone *else than you) -->
Some weblinks you might not have seen a few days ago, that have useful information about seizures. You can likely find your seizure type there (sounds like Complex Partial like mine?), and it shows that we're not aware of what we say or do while 'away'. If it would help any of them you could print the page, so they'd see how 'easy' it is to make your return more comfortable and quick, compared to getting into a panic about what to do.
The main First Aid site I use (Julie put together for us, and Idaho) is --> http://www.epilepsyidaho.org/seizure.htm . (Check the description of 'what we do' for each type. That's why I thought your's would be either Complex Partial (Temporal Lobe) or Grand Mal from description.)
If in water (swimming etc.) at seizure onset, there's some differences what to do, that are described at http://www.epilepsyidaho.org/seizure2.htm .
Learning about Epilepsy for people newly diagnosed or helping others understand. http://www.epilepsyidaho.org/learn.htm , and the General doorway that eventually links to all above but may have other stuff for people near to Idaho is at http://www.epilepsyidaho.org .
Those have lots of useful stuff about taking the 'edge' off learning to handle seizures for people newly diagnosed and people around us -- family and co-workers, etc. If any Medications are prescribed, the U.S. Ep. Foundation has a large database of info. but also a Medications Glossary within http://efa.org site. G./
gomper - 08 Jul 2005 17:10 GMT Thanks a lot to Beck, GRoss and Dave. I have in fact checked the Idaho site several times, without finding anything that fits (pun not intended) my case. OK, so I'd have another look, and found, under Simple Partial, this: "Partial sensory seizures may not be obvious to an onlooker. Patient experiences a distorted environment. May see or hear things that aren't there, may feel unexplained fear, sadness, anger, or joy. May have nausea, experience odd smells, and have a generally "funny" feeling in the stomach". Of which only the first sentence describes my experience. One of the links though, mentioned what was called non-epileptic seizures. Maybe I should have a look at that as well.
rgds, ole k
Julie - 10 Jul 2005 07:12 GMT Hi Ole, I think your description is very good. It is what YOU are sensing. If you write down ahead of time what you want to say, I think that helps to make the doctor visit go smoothly. If you neruo wants a further explanation, he may ask something specific about your description. That doesn't mean you are giving a bad description, it just means he/she is trying to pin down everything that is happening as relates to your seizure disorder.
Hope your visit goes well.
Julie, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org
> Hi all. > In a couple of weeks I'll be seeing my neuro again. One main difficulty [quoted text clipped - 29 lines] > Thanks a lot in advance, > ole k gomper - 10 Jul 2005 09:32 GMT > Hi Ole, I think your description is very good. It is what YOU are sensing. If > you write down ahead of time what you want to say, I think that helps to make
> the doctor visit go smoothly. If you neruo wants a further explanation, he may > ask something specific about your description. That doesn't mean you > are giving a bad description, it just means he/she is trying to pin > down everything
> that is happening as relates to your seizure disorder. Thanks a lot, Julie. (And once more thanks to GRoss, Dave and Beck.) Yes, I'm also getting quite satisfied with these descriptions :-), so I think I've finally got something more specific to tell the neuro. I guess the reason I asked here, was if anyone found these symptoms familiar, and could add other metaphors as well. Anyway, I guess this will do. I expect to hear from him within a couple of weeks now (he's on vacation right now), as I've also recently had a blood test for checking the Lamictal values.
Again, thanks a lot, all of you.
ole k (sorry about the way I seemed to mess up the quotation.
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