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[RunningGirl85]

Hi all,

I am 26 and was just recently diagnosed with epilepsy and thought I might introduce myself with a little background. I say a lot of this in my profile, but I figure I can repost it here I was just recently diagnosed with epilepsy after I had my third tonic-clonic a couple of weeks ago... Though my first two were in the same day, and the doctors attributed it to diet/caffeine pills I was taking at the time (I was in college and was spending lots of time up studying... in my defense... I did stop taking them immediately thereafter) since nothing showed on my EEG. Since those first tonic-clonics, I have had auras more and more frequently, though I didn't know what they were until I started doing my research. I may have had them prior to my first tonic-clonic, but I don't think I noticed them much... I did used to have dizzy spells, but I'm not sure if they were the same thing (I really didn't pay attention). My auras tend to vary a bit... but most of them include being in a dreamlike/detached state, deja vu, and a rising/sometimes nauseous feeling in my stomach, and sometimes I'll also notice a slight smell (just NOTICED it today, though I immediately recognized it, as I have had it before). For the most part, I'll have several short auras for a period of a few days, and then I won't have anymore for a month or so... Then they'll strike again.


I ignored those for quite awhile... The past two and a half years, actually. I'm in the military, so having seizures isn't exactly conducive to a successful career, even when they tell me I'm supposed to avoid shift changes and should be getting 8-10 hours of sleep, it's awfully hard to tell someone that you can't do something because you might have a seizure! Especially when there were no visible symptoms (I freaked out during the first aura I had after the tonic-clonic and immediately ran to "sick call," but they sorta brushed it off, and attributed my problems to a lack of sleep and gave me the rest of the day off... I was extremely sleep deprived that day). After that, I just learned to deal with them and take care of myself as best as I could. Some days I could stay up all night with no issues, and other days everything would seem fine, but I'd end up with several auras throughout the day. I had no idea what triggered them, but because I had had no more tonic-clonics, I figured I was good to go... I was wrong.

It wasn't until a few weeks ago (while I was deployed in Afghanistan, of all places) that I had my third tonic-clonic seizure. Someone walked in while I was laying on the floor having the seizure..... I had apparently hit my head on the flagpole next to my desk and there was a bunch of blood all over the floor (great thing to find in that environment, I'm sure!) Needless to say, I was immediately returned back to the U.S. because I cannot handle a weapon for at least a year, and so here I am... I'm on Keppra now, though I'm not sure that it is helping me much, as I seem to be having MORE auras than I WAS having. Of course, I also switched timezones by 8.5 hours, and have been under a lot of stress not knowing what is going to happen with my military career (or how I'm going to get around while being unmarried/not allowed to drive/and my entire family on the other side of the country, with most people I know being deployed!).

It's been a stressful few weeks, but I'm trying to cope with it. The people close to me are incredibly supportive, and I know that I'm pretty lucky that I usually remain conscious for most of mine! My only question/concern is that as mine have been getting more and more frequent... is it likely that I'll have tonic-clonics more frequently as well? And what could be triggering these NOW? I know stress/sleep-deprivation can do it, but my levels of stress/sleep deprivation were actually not bad before this last tonic-clonic (though I did notice it seems to play a role in my auras). I also did notice I tend to get auras more frequently when a) I'm running, or b) I'm on the phone. All I can think is maybe it's my breathing changes? I tend to get excited and talk a lot more/louder on the phone (haha), and I have never heard of RUNNING triggering seizures, especially because I'm in decent shape and don't really have difficulty breathing while running, but I've noticed it several times. Anyone else get auras while exercising?

Anyway, that's my long introduction - thanks for reading if you made it this far, and I'm looking forward to talking to everyone

 

[RunningGirl85]

Aannnd I just repeated myself in the first paragraph - oops! It's been an off day for me, hehe.

 

[CathyAnn31]

Welcome!

You've come to the right place. Lots of knowledge and support.

 

[Nakamova]

Hi RunningGirl85, welcome to CWE!

As you probably know, taking care of your overall health (getting plenty of sleep, eating properly, etc.) can help in terms of preventing or minimizing seizures. More good info here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ It can really help to keep a journal. It's a good way to potentially identify triggers (anything from fatigue to hormones to caffeine to flashing lights), and gauge how well your meds are working. (BTW, if you think that Keppra is making things worse, that could well be the case -- not every med works for every person. There are quite a few meds out there to try, so let your neurologist know.)

Seizure triggers can sometimes be tough to identify because they can can occur several hours before the actual seizure, they change over time, and more than one can play a role. For instance, running could be a trigger, but it might also be related to what you did or didn't eat earlier in the day, your blood pressure, etc. When you talk on the phone, are you standing or sitting? Are you holding the phone with your hand or talking with a headset? What is the lighting like in your home/workspace? If your breathing is playing a role, you might want to practice doing short breaths from the diaphragm where you exhale longer than you inhale. These can sometimes help prevent or derail a seizure. Thread on exercise-induced seizures here: http://www.coping-with-epilepsy.com...g-seizures-there-anyone-else-out-there-16028/ You might also look into neurofeedback if that's an option. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

It is important to get your seizures under control, since the more you have, the more your brain can get into the habit of seizing. If the medication is working properly for you, and you take it consistently, you shouldn't have any more tonic-clonics, and ideally few or no auras. But sometimes it can take a while to find the right med or dosage.

Best,
Nakamova

 

[RunningGirl85]

Thanks for the great info! This is all great stuff for me to pay attention to, and bring to my neurologist's attention. She actually noted that my dosage of Keppra is fairly low, so I'm supposed to let her know how it's working by keeping a journal... I just started on the meds right after the seizure happened to hopefully avoid more on my return from overseas, but I haven't really started care with a primary neurologist yet... I'm kind of in transition right now since I'm supposed to be deployed!

I have started keeping a journal, which is how I noticed the running thing and the phone thing. I am usually sitting while on the phone, and it is a headset, and have been sitting for every tonic-clonic I've had (which is why the running thing is so weird to me). I've also noticed all of my tonic-clonics were about one to two hours after lunch, though the running auras are almost always in the morning (though I do usually eat something small before I run). Type 2 diabetes runs in my family, so blood sugar is definitely something to look at (though I'm a small person, and try to stay fit to avoid too many issues with that), but while my blood sugar was slightly high after both tonic-clonics, it was never THAT high (around 120, which the doctors said could just be a stress reaction), and certainly not high enough for anyone to really comment on. I get grumpy sometimes when I haven't eaten, and on one particularly crabby day my mom tested my blood sugar once at 64, but we weren't sure if that was because we messed up the strip or if it was really that low! I think there are a few issues with blood sugar level, but because I DO stay fit, I think it's GENERALLY under control, and I'm not sure if it would cause seizures or not.

As for lighting....the lighting at work is florescent (sp?) lighting, though at home it's pretty natural. Bright/flashing lights don't seem to cause problems, but again, a lot of the stuff SEEMS random. I have fairly low blood pressure most of the time (which has been known to cause some dizziness sometimes)... After my first tonic-clonic it was somewhere crazy low (65/40 or something like that), though after this last one it was high (for me). It did get down fairly low a few times in the days following the tonic-clonic (I was getting monitored a lot because they were flying me back to the U.S.) to where the doctors wanted to re-do my vital signs. My heart rate also does tend to get kinda high easily... For someone who runs as much as I do, my resting rate is pretty high, and they noted tachycardia after my last seizure (I think my heart rate was 109). Though I've never had any type of auras when running races, which is when I'm REALLY exerting myself, so that seems strange. By the way, I know all these numbers because I have the records I don't really remember much that they actually TOLD me.

Anyway, thanks for giving me some stuff to look at! I don't actually KNOW anyone with epilepsy, so this is the only way I really have to bounce ideas off of!

 

[Nakamova]

During or just after a seizure it's not unusual to have the pulse and blood pressure zoom way up. But if your vitals are out of range (either too low or too high) on a consistent basis, then that may a good place to look for triggers. A lot of things that weren't problematic before you start having seizures can have a negative impact once your seizure threshold is lowered and you're more vulnerable.

 

[Krista2882]

For the most part, I'll have several short auras for a period of a few days, and then I won't have anymore for a month or so... Then they'll strike again.

Hi! You mentioned they're often separated by about a month... have you ever noticed if they coincide with your monthly cycle? Hormones are a trigger for a number of us girls here.

 

[RunningGirl85]

Hi! After reading these threads, I've started paying attention, but I never noticed it before! My tonic clonics (now that I think about it) were both about a week after my period... maybe a little more (maybe closer to ten days), and my partials have been pretty bad the past few days and I just started my period, but I also JUST started on meds/moving around a lot/etc. so it's hard to say WHAT is causing these. I'll be looking at that more now though