HELP! my parents and neuro dont believe me!

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Ok, my parents dont believe me when i tell them when im having simple partial seizures. I get horrifying deja vu, bad smells, and bad tastes. I tell my mom about them but she looks at me like im crazy or making it up. And i think my neurologist thinks im lying about it. Im not, this is really happening to me. I heard that lack of oxygen can cause brain damage that causes myoclonic jerks, which my neuro insists that the jerk i get is tourettes, but it's not because i've done my research and such.. I also have chronic vasal vagal attacks which are really severe and i have at least one everyday and had them since i was four. A couple of times i've had seizures because of them. Could chronic vasal vagal attacks cause minor brain damage? I also have a really really low blood pressure which my neuro gave me this medicine to rasie it, it hasnt stopped the attacks yet. Anyway some simple's i've had latley: During the school day, it was 6th hour in math class. Then all of a sudden i had no idea where i was, no idea what i was doing, no idea what time it was. I think is what you call jamais vu, it was terrifying. Then after about a minute it all came rushing back in this weird sensation, as if my body to could feel the reality comming back. I dont know if this is a simple but this cant be normal. Next, on the same day after school. I was chweing gum, i had been chewing it for about 15 minutes then all of a sudden it tasted like alcohol in my mouth, as if i was swishing a mouthful of vodka. It was horrid, it lasted about a minute and then the flavor regained it's minty freshness. And when i told mom about it she goes and i quote: how do you know what alcohol tastes like? That really made me angry because she acted like she didnt care or acknowlege what was happening. I feel lost, no one believes what is happening to me, how do i convince them and has this happend to anyone else?

Comments

Re: HELP! my parents and neuro dont believe me!

Submitted by fzMousie on Wed, 2006-10-04 - 07:24

(((hug))) I am 27 and married. I was diagnosed this past June with a simple partial and complex partial seizure disorder. My parents do not believe me either. They REALLY didn't believe me at the beginning. First, does your school have a counselling program? Try talking to a counsellor or a teacher that you trust. You need someone on your side with this. Second, my neuro doesn't say much at all, and at first I thought maybe he didn't believe me, either. But as time went on and I asked more questions and took MYSELF more seriously, it seemed like he was taking it very seriously, too. The biggest thing I can recommend to you is to journal your seizures. When I first started doing this, I was writing big long paragraphs (my neuro hated that). I stopped doing that and now I write little point forms notes. Day, time, what I was doing, what it felt like. Doing this consistently might help you identify triggers which will help your neurologist treat you. Your mother's reaction sounds a LOT like mine. =( Regarding your last question, "has this happened to anyone else?" Yes. Bad, frequent deja vu is the big sign for me that my seizures are increasing. A sense of confusion frequently happens. I'll be in the middle of doing something and will have no clue where I am and sometimes WHO I am. I don't know about the link between vasal vagal attacks and seizures. Hopefully someone else here can help you with that. Maybe you can ask your neurologist? Biggest advice I can give you is this: Don't go to the doctor or your parents and tell them you were looking up stuff on the internet. They will dismiss you out of hand, and that is a lousy feeling. Trust me. Been there, done that, walked that road, bought the t-shirt. :/ Print some of the information on this site off and maybe say that you were referred to this site. I'm not a big fan of fibbing at all, but I can tell you the general reaction to "I found this online" is less than stellar. Check out: http://www.epilepsy.com/epilepsy/seizure_simplepartial.html good luck. Hugs and prayers.

FtMousie I think you have

Submitted by heathersmithers on Wed, 2006-10-04 - 10:24

FtMousie I think you have covered it all so eloquently (grin) i to have the t-shirt...lol.... I am fortunate that i am 40 years old so it does not really matter if much of my family is with me on this or not...my husband and kids are with me,,my dad is a strong support,,,,my sister tends not to put any faith in anything that is happening,,,the epilepsly,,the stroke, the ms etc... my ep neuro i have been seeing for a little over 4 years now i think,,,memory is iffy there,,,i and get the same feeling with him,,that i always felt up until about 4 months ago that i had to prove myself to him,,even though i knew that my sleep eeg had seziure activety,,,,i am currently on 1200mg of carbamazipine, and 300mg of topamax a day with a script of ativan in case i have cluster seziures which he explained could lead into a grand mal( for some reason he seems to be taking more interest in me lately) ,,the seziures seem to be getting more under control at this point,,,but i started off with the horrible smells,,,the blank spaces in time etc... and it just seemed like my ep neuro was not taking me seriously as well, but ftmousie has it pegged well,,,notes notes notes,,,,and point form at that,,,,seems like most of the ep neuros have a short attention span (grin) Also as a parent of 3 teenage boys i must say that perhaps your parents are burying theri heads to avoid dealing with a serious situation ,,,,but you will have to keep at it,,,you are obivously old enough to know your own body and how it works and if something is wrong...if there is one thing a teenager can be it is persistent (grin) Stay safe Heather

Re: Re: HELP! my parents and neuro dont believe me!

Submitted by SoccerFreak248 on Wed, 2006-10-04 - 17:28

thank you for the hug, i needed that. I've also had to something similar like this: getting my autism diagnoses lifted, the day it was lifted was the best day of my life. Because the 6 years before that were the worst 6 years of my life. It was the most complete BS diagnoses any doctor could give someone, and it took 6 years of convincing to get a re-evaulation. But it seems like i have to live the nightmare again, well it never has really ended because of the lasting depression and emotional damage, but anyways.... yeah. Im getting my eeg friday, i've heard that some people with epilepsy get normal EEG reading's, what do i do if this happens to me, which im sure it will because every medical test i've taken has came back negative.