Possible Constant Aura - Don't know what to think of this

[Endless]

My epi lowered my dose of Trileptal from 1200 mg to 900mg because of adverse side effects. Since then I've had a low level aura that started out to be intermittant, but is now almost constant. My auras are like an electrical feeling in my body that feels like a bad chord sounds in music, plus a feeling that something is really wrong, sort of like forboding. They don't turn into a full simple or complex partial like they used to, so things are kind of under control.

It's all at a really low level, not huge like they used to be. But I still feel really icky. It's hard to function, and I'm not sleeping because this wakes me up most of the night.

Should I be worried about this, or should I try to learn to ignore it and just try to get on with my life?

I know auras where you smell something, etc. are simple partials. Is this electrical/forboding feeling a simple partial also? And if it is, having them so often for so long - is it harmful?

 

[epileric]

My auras are different but when I was younger there were times I would get 3 or 4 in one day & each day I'd get more & more until I had them every 5 to 10 minutes, even at night so that I couldn't sleep.

The only thing that stopped them was having some pot to smoke but I haven't used that stuff in a very very long time.

 

[Endless]

Eric, what are your auras like?

 

[epileric]

mine feel more like a light tingling around the head, sort of like the sensation one gets when their arm is asleep except it starts at the crown of the skull & radiates forward in waves.

 

[Endless]

It never ceases to amaze me the variety of what all of us feel. As many types of auras and seizures as there are grains of sand on the beach.

I googled "constant aura" and so many people seem to experience this and they seem to be surviving it. Though not happily. Maybe I just need to buck up and try to get used to it. I was a zombie on 1200mg of trileptal, plus felt like I'd been hit by a truck (flu-like symptoms and rash). Don't know if the aura is worse. Maybe kinda a tie. Hate to call the doc cause he may up my dose from 900 or add another med. Can't stand the thought of that.

 

[epileric]

I know we've talked about this before here but there's an acupressure point about 1/3 of the way down your lip under your nose that is supposed to help seizures.

I remember someone else (I think it was Rae) saying that medical personal used to use that point at times. Hopefully it will help you out a bit.

http://www.acuxo.com/meridianPictures.asp?point=GV26&meridian=Governing%20Vessel

 

[Endless]

Well, I took my own advice that I gave Daisygirl in the following string, "Simple Partial or Aura?"

http://www.coping-with-epilepsy.com/forums/f23/simple-partial-seizure-aura-9728/#post98770

I know auras ARE seizures. I guess I was just trying to explain them away. Because if they were seizures then I'd have to call my doc. And if I call my doc, he'd do the expected, which he did go ahead and do. I called in today and he upped my medication. I so did not want that. But he's concerned about the auras/simple partials I've been having all day and night, and thinks they need to stop.

I'm on 300 mg 3x per day (900mg) now. Starting tonight I'm on 300mg 2x per day, then 600 at night. Total, 1200mg/day.

This so does not make me happy. When I was on 1200mg/day before I had pretty awful side effects. It was like having a bad case of the flu (joint aches, dizzy, muscle aches, fever, nausea, exhaustion). It was like I had been hit by a truck. Plus a nasty rash. So he reduced it to 900mg, but that isn't controlling the seizures.

So here we go again.

Maybe I should be posting this in "I'm afraid of the meds."

Because I'm afraid of my meds.

I feel like curling up and giving up. I feel like crying. I feel like cr** now with the seizures, and on 1200mg I will feel like cr** except from the side effects.

Somebody tell me there is a way out of this. Was anybody having adverse reactions at a higher dose, but seizures not controlled at a lower dose? What did your doctor do? What are you on? How are you doing?

I feel so alone with this. I try to tell my family what I am experiencing, but they just don't get it. My mom just shakes her head and says "what a strange disease."

 

[Nakamova]

I don't suppose there's a way to do a 1050 dose? I've found that even tiny increments make a difference. I insist on getting my Lamictal in 25mg increments (even though it means taking lots of little pills), becasuse it means I've been able to fine-tune the dosage.

 

[Zoofemme]

I'm with ya endless...I'm having a hard time lately myself A 50 mg increase in lamictal, a 300 mg decrease in Trleptal (stop all together friday) and a breakthru seizure on tuesday while at the lab getting bloodtest led to the addition of .25 mg of ativan *sigh*. DH also grounded me from the back of the motorcycle...I'm never allowed on it again until the siezures stop, this in turn cancelled our motorcycle trip vacation plans. A HUGE argument ensued over that...I keep asksing the same questinons you do...Is there ever a way out? How much higher before the inevitable crash (SE's or seizures get worse) Whats next?

 

[Endless]

Zoofemme,

I'm so sorry. A double drug increase. Ick.

Vacation cancelled. Double ick.

Fight with S.O. Triple ick.

I'm on my first day back on the increased dose of trileptal, and I took the meds but chickened out about doing it antihistamine free. I took a bunch of benedryl which seems to supress some of the monster rash, but almost all I do is sleep. The good news is that the seizures are better under control. Not completely, but better. But I feel like a zombie. Ugh.

How about you and I go to Tahiti instead? We can be on our crazy meds on the beach, away from stress, doctors, and all such things. We can drink virgin margaritas and everyone will think we are drunk because either the drugs or the complex partials will make us look nuts. On the beach seizures, zombie-like behavior, falling down, saying crazy stuff, etc. don't matter. It doesn't even matter if we have a complex partial and take our tops off. We'll just blend right in. Just like spring break.

 

[Zoofemme]

Tahiti would be nice right now....ummm...don't know if the world is ready for me ina bikini let alone without the top of it :roflmao: !

 

[Endless]

I can't remember who posted this, but she had a complex partial and took her top off in the middle of the mall. At least at the beach people would shrug and say, "she's european." Don't think that excuse would work at the mall! lol...

 

[Billyboyboo]

My Aura's are that "Alice in Wonderland" feeling, sometimes a feeling of my knees shaking too...