Ever been mis-diagnosed? Mis-Labeled?

Re: Re: Ever been mis-diagnosed? Mis-Labeled?

Submitted by cjcurls on Thu, 2006-04-27 - 11:22

Barbie, After the deep breathing test (where they have you pant hard for 3minutes) I hyperventilated. I knew that it was not a seizure (partial), but to my husband it looked like one of my "spells" so he pushed the button for the nurse. Because of that (not having atypical electrical activity) at the time that he indicated I was seizing I feel that we were dismissed as "panic attacks" and/or phsycogenic spells. He was just so anxious for me to have one that he jumped the gun - We were both so confident that I would have one and when I didn't respond to one of his questions he got excited. After that I felt such pressure to seize... Now that I think back on the VEEG experience I am dissapointed - Even at the onset of what my husband thought was a seizure no one came for a comprehensive evaluation me after the fact. They came & asked some questions - asked me the date, 3words that I was supposed to recall (couldn't but that's pretty normal for me - my memory is shot), where I was, etc. THAT WAS IT. They didn't take my blood pressure - didn't come in later to see how I was doing, didn't ask me if this was a typical manifestation of a seizure, nothing. They left me alone until MANY hours (next day in fact) later when my neuro (regular neuro not epi) came in to tell me that no electrical activity showed on the EEG. It was then that I was written off (I could see it in her face). Here's my big thing - - now that I've done a bit more digging I have uncovered SEVERAL reasons for seizures that have nothing to do with epilepsy - One major one being cardiac arrhythimas. Another is spacial disorientation from syncope which can look like a complex partial seizure (unexpected inadequate supply of blood to the brain due to low heart rate or low blood pressure), Lupas - which my Grandmother has, head injury (I've had 2 concussions - One major in a car accident when I was in a rollover with no seatbelt), migraine headaches, metabolic problems, etc. etc. etc. Why haven't I been evaluated for ANY of these???? Instead of addressing ANY of these issues I was just tossed aside with a quick-fix diagnosis of counseling for panic attacks. Good Gawd if I'm having panic attacks I'd hate to see what I was like if I actually had something to panic about! I've got an easy, stressless job (well, as stressless as can possibly be anyway -I work from home in my PJ's all day), my husband and I are happy and trying to have a baby which is a BIT stressful but that wouldn't explain why this has been happening for 5 years, we are financially secure so I don't worry about money (which is a major stress for many), I was not abused, I don't take drugs or drink heavily - - - - NOTHING! Arrrrrrrggggghhhhh - It's so frustrating. I'm so sorry about Jessie - I can only imagine watching her go through this from your perspective - You as a mother feel the need to help her & there's nothing you can do. Keep digging - Like me, she has very REAL symptoms, just because one doctor says phsycogenic doesn't mean that you should give up. (Not that phsycogenic seizures are any less real...) It just seems like there's more going on with her than in her head. I haven't seen an epileptologist yet - not being able to drive has hindered me from scheduling because they're all in downtown Dallas & that's a trek for us. I hate that Mark misses so much work as it is & that would be a 1/2 day event. I was trying to be more convenient for him by staying within our neighborhood, but it appears that you may be right - - - it might be worth it. Keep me posted on Jessie. She's always in my prayers (as is baby Sara). - - - Christine