Please Help, Auras

[Mak]

Sorry for the long post.

I'll give a little background first. I am 22 years old, my seizures started when I was 17. I do not have epilepsy, and from what I know the neurologist just defined my case as a "seizure disorder" nothing specific. Now when I was 17 through 20 my seizures were always triggered by drug use with drugs that specifically lowered the seizure threshold. I was battling addiction, and I would have a grand mal every 4-6 months like clockwork. I got sober when I was 20 and have been off drugs and alcohol for almost 3 years now. I have not had a seizure or an aura after I got sober. My doctor insists I still had a disorder regardless if they were triggered by drugs, and I didn't believe him until a week ago.

A week ago I was driving home, and I got an aura, undeniably exactly what I felt before I used to have seizures. Extremely uncomfortable feeling, hard to explain, but I'm sure some of you understand. I felt like I wasn't in my body, trouble focusing, trouble thinking of anything, I couldn't remember simple things like song lyrics I knew, my legs felt like rubber, I was confused, anxious, and had horrible fear. Anyways the symptoms don't really matter as I was reading all auras are different but I was on the highway and ended up pulling over and having someone pick me up because that's pretty much game over if you are driving and it happens.

I did not end up having a seizure, and the aura passed although it took a couple hours, which reading seems a lot longer than other peoples' last. I felt off, just not myself for a day after, but then returned to normal. After this incident I talked to my doctor and he said that heat can lower the seizure threshold and raised my lamictal from 500 mg/day to 600. I work in a kitchen on the top floor of a building, and my AC broke, so I was pretty much in a 85-90 degree room most hours of the day. I got an AC, work is still the same, but it's not awful. A week later (yesterday) I had another, not as severe, but the same symptoms and it didn't last as long. Possibly because my lamictal dose was raised.

They are terrifying especially because twice I was driving, this time I was very close to home and managed to get home and lie in bed till I fell asleep. I'm now terrified to even leave the house, and if I have the seizure and have to stop driving for 6 months (how it is here) my life would become infinitely more difficult it's possible I would even have to quit my job or get different hours. The good news I guess is that I'm not having seizures, but the auras are such awful feelings that they give me fear all day.

I'm just wondering if this has happened to anyone else? Auras without seizures after being seizure/aura free for a while? Unfortunately I just had my 3 year check up with my doctor and everything was fine so it was pretty much just a hey how are you doing? Good. See ya. Very hard to get an appointment with him. I know benzos drugs like Xanax and Klonopin can help relax during the auras but I cannot take these.

Thanks for reading and any responses it is much appreciated.

Edit: Things to rule out. I eat very healthily, work out regularly, take supplements/vitamins, get good sleep, and not stressed besides the stress of having a seizure this past week.

 

[chmmr]

Sorry to hear you are having a rough time Mak. From what i understand, Seizure disorder is just another term for epilepsy (because the term epilepsy really means that you have had 2 or more seizures). Hopefully someone else can chime in if i am wrong.

I would definitely look at booking an appointment with your neuro and letting him know about the changes you have been experiencing. Even if it takes a while to get an appointment with him, better to get that ball rolling now than later.

From what i have read (and again someone else can correct me if i am wrong), but auras can actually be partial seizures as well, so it is possible that you are having seizures which is another good reason to talk to your neuro asap. Hopefully someone else that knows more can chime in, but i did find this thread you could read in the meantime:
http://www.coping-with-epilepsy.com/forums/f23/can-u-have-auras-w-o-having-seizure-4523/

 

[Mak]

Thanks for the response. Last night at 7:30 I started feeling very tired. When I lay down and closed my eyes I had a very weird sensation that my eyelids were closed but my eyes were still open underneath them. When I opened them I had a sort of "melting" vision effect where everything I looked it looks like it was slowing dropping. I noticed myself breathing very heavily and had an overwhelming axiety and this would go on and off. I remember twitching a couple times but no full convulsions. I ended up falling asleep for 3 hours. It's possible this could have been a seizure, but it's just strange because I've never had anything but a Grand Mal where I black out and wake up with my tongue half chewed off. These mini/partial seizures are a new thing, and I'm confused about how they just started popping up.

Definitely going to call my doctor tomorrow and set up an appointment. I've read a few threads like that thanks for the link will check it out.

 

[Nakamova]

Hi Mak, welcome to CWE!

I agree with chmmr, auras are a kind of seizure too, so if you are experiencing them it's a good idea to check in with the neuro sooner rarher than later.

I had something similar happen -- my seizures were controlled, then I switched to a new med, and after a few months I started having "breakthrough" partial seizures where I felt as if I was awake and dreaming at the same time, sort of like when you nod on and off in a classroom. I had never had warning auras before, only tonic-clonics (grand mal seizures), so I wasn't sure what was going on. I decided to wait until my 6-month check in with the neuro to tell her that I wanted to try a different med -- but a few weeks before that date I had a massive seizure.

So don't delay, let the neuro know it's urgent.