I just want to hear from other people about this as I have been brushed off by doctors and don't know what to do. Sorry, it's long :(
In early July I went to the ED. I had been at work and I didn't feel right all of a sudden. I felt really dizzy and everything seemed very surreal. While the nurse was taking obs, I started seizing! I have never seized before. I remember each one of my hands twitched and then...boom. My body went rigid and I was shaking violently. In the space of 7 hours, I had 26 of these episodes. I didn't lose consciousness but I couldn't direct where my eyes went, I couldn't speak and I wasn't fully aware of what was happening (didn't notice a heap of people suddenly appear in the room.) I had blood and urine tests done, nothing showed up but they refused any head scans or EEGs because it wasn't a grand mal. I was given valium but it didn't touch the seizures or the twitching. Got sent up to observation and had the doctor there accuse me of malingering, told me it was all in my head and to cut it out. I was gutted, I am not one for being the centre of attention, I was really scared and this cow was calling my a liar?
I left the hospital, utterly furious and she didn't even try to stop me. My Dad picked me up from my place to take me to his, he was on leave and could keep an eye on me. By the time we got to my hometown, I couldn't walk properly and my speech was affected, my body was twitching really bad. Got taken to a new hospital, had another seizure (in front of my Dad). This one was the worst. I was told it lasted two minutes, I remember bits of it but I don't remember them cutting my tank top and bra off (if I had been "faking" then I would have come up swinging at this point, I am very shy), I don't remember them putting a cannula in each arm and I don't remember being moved from acute to resus. I was given Madazolam (sp?) and Phenytoin, the seizures stopped. I was admitted for observation, I was still ataxic but the seizures had stopped. They did an MRI (clear) but no EEG! The doctors wrote it off as psuedoseizures but I've looked into them, they don't make sense! I'm not stressed, I am currently very content with my life!
They couldn't find anything wrong, so they released me. I had to go to my GP to get a referral to a neurologist (and the appointment isn't for another 3 weeks!) I have had more seizures like the ones in hospital. I had two in one night in my sleep, I woke up with my spine trying to bend in half. I still don't feel right at times, I feel like the front of my brain is buzzing sometimes, I feel very spaced out, I have twitches, the corner of my mouth will tense up, like I'm sneering and sometimes I even feel like my teeth are itchy! My lips feel numb a lot and I find myself chewing them. I am just feeling very out of sorts sometimes, last night my brain felt like it was getting sucked down a plug hole.
Dad told me my body goes rigid straight, violent shaking but I don't thrash or make any noise. My eyes rolled into the back of my head but I didn't bite my tongue, drool or wet myself (hence the doctors not caring because it isn't a grand mal)
Can anyone give me any advice? I am impatient to get this sorted so I can drive again! I have a new car that I can't drive! And I am scared of going to this neurologist and she doesn't take me seriously either. What if she brushes me off too?