Anyone Else Have Seizures?

[Becia]

Had to see a general practitioner yesterday to get my MRI approved, and he was doing some research in the office while we were talking. Apparently three of the meds I'm on for my pots, can cause seizures, but we both know I cannot go without them. They were the florinef, Paxil, and the bentyl I take for my ibs. I have family history of this, but never had any myself, so it's all kinda weird to me for some reason.

Looks like after my testing, I might be on some preventative with some migraine assistance per the neuro guy, which I need anyways with as many as I've had lately. Still having seizures though, which really ****,because they hurt. I'm black and blue from hitting things already, I apparently hit the dresser hard on Monday, as I'm really beat up, and I still have the headache.

Also, the fact I get two hours of sleep a night, that doesn't help them either. I'm flat out exhausted, and it's beginning to take a toll. Maybe twice or so a month, I get enough rest to feel energized. Most of the time, I wear myself down so easy trying to be normal, I don't know my stopping points until I'm flat on the ground.

Thanks for y'all's info... I have gathered this information, and plan on taking it with me to the doctors.

[TCP]

I'm sorry to here this, Becia. I hope you can find some help with it. I'm currently being checked out for a plethora of sleep issues and it's believed that I have some sort of seizures. I had a polysomnography and the doctor is going to send my to a dedicated sleep centre for more tests.

[Becia]

EEG and MRI are both complete, I see a neuro guy on the 12th... We shall see how I do until then I suppose. I had another seizure Sunday, and a couple of smaller ones since, but I've also had a lot of triggers in the testing for everything, and no sleep, which doesn't help.

[Becia]

Bumping with an update... I just got back from the neurologist. MRI was clean, my EEG was slightly abnormal, so they are scheduling another longer EEG to be done soon. I got no answers from this guy. He was rude as well. I'm sorry I shake because of my meds, I'm sorry I'm nervous, because I don't like new doctors, and I feel horrible right now.

I'm just not happy. I'm upset that I triggered myself so bad just to get to the appointment, just to not really get any answers. They wondered why I wasn't on any preventative.... Well, that's why I'm here, duh! So I guess I get to continue having these for a bit longer. And I'm going back on my stomach meds, even though they apparently can cause them too, it's not worth suffering so much with this.

Becia needs chocolate. Or something. If I didn't just take my meds, I wouldn't be opposed to a beer even.

[KareBear]

(((Hugs))) I am sorry the doctor was rude and unhelpful, that's so frustrating when it's so difficult to even make it to an appointment and then to have this experience. It happens way too often to us.

[Becia]

I just know next time I'm taking my roommates with me. I was trying to explain to this guy I do not remember these seizures, I only know what I've been told by the people around me. Asked if I bit my tongue or anything, yes, I have realized I somehow ended up with cuts and sores from them. I have bruises I have no clue how I got them. I've woken up on floors and had no clue how I got there. I have a massive screaming headache that never goes away, I haven't slept in ages, and when my body does decide I need sleep, I'm down for the count for a week.

But because I pass out so frequently, there's no way these are seizures, according to him. Yet, I'm wasting about 2,000 bucks doing testing that has shown I have some sort of abnormality, and you want further testing. And I couldn't understand him, he needed to look at me so I could read his lips somewhat, and he kept looking away and interrupting me while trying to explain what was happening.

Oh, I am so mad. If I can get the energy, I need to bake something. Dinner is likely going to be a piece of bread and jam, and cake, lol.

[Chaos]

Sorry Becia! Such a major bummer when you go to a new doc with the hope that MAYBE this time they'll actually be helpful and they aren't. But then when they pile on by adding rude and condescending on top of it....Ugh!

Having other people there helps sometimes but I know when I went to see a local neuro once I even took my sister who is a nurse practitioner and he was still terrible and behaved much like you are describing. Ironic that so many docs want to blame our conditions on depression when the only time I'm even mildly "depressed" is after leaving one of their appointments! Doubly ironic that we get labeled as anxious when it's a perfectly normal reaction to going to see doctors after the way we've been treated time and time again.

Hang in there. The fact that your MRI is normal and the EEG is mostly normal may actually be good news. May feed more into the theory that this is related to your dysautonomia rather than a true seizure disorder. Just because the neuro doesn't know what the problem is doesn't mean that there isn't a problem. Just that HE doesn't have the answer you need.

Keep looking. Hopefully you'll find a doc with better answers in the near future. The old adage about "you have to kiss a lot of frogs before you find a prince" holds out for doctors as well.

[gjensen]

I have been having what I call "mini seizures". I do not know that they would fit any technical category.

Laying back, had been my safe zone concerning high blood pressure and heart rates. Recently, I began to have spells where my ears start ringing louder (they are always ringing), I have an awful sensation come over me and then BOOM.

My heart rate goes crazy from nowhere. My stomach etc. starts spasming, and I get very cold. I start shaking and chattering from feeling cold. Then the whole thing eases off. comes back, eases off.

I am aware of what is happening, but I am "stuck".

My experiences are not as dramatic as yours, and I could only imagine. I can relate with the doctors. I thought that I had a bad batch here, but it seams a lot of people have that experience.

[Akgirl]

I just wanted to chime in. The doctors thought I was having seizers and they turned out to be very bad convulsive syncope. I am not sure if this is the case with you guys but don't rule it out! I shake and convulse and sometimes pee my pants. It mimics a seizure but is actually convulsions.

[Kay107]

Before I was properly diagnosed a neuro 'diagnosed' me with epilepsy. He said I even had a seizure during the EEG (though I felt no symptoms whatsoever). The anti-seizure meds made my symptoms so so much worse. I couldn't stay conscious for any amount of time, just passed out every single time I stood up or sat up. He sent me to a different neuro who said that "reading an EEG is an art" and I did not have a seizure during the EEG, nor did he think I had epilepsy at all. He put me in the hospital for a week with continuous EEG/EKG monitoring and that was how I finally made it to an EP.