Hi, new here...

[jax22]

Hi everybody. I was surfing the internet because of some recent symptoms and stumbled on the forum. I'm 22, and if you check my profile there's a longer history there, but I've been on Keppra for the past 6 months.

I'm going to call my doctor tomorrow but if anybody has insight into this I'd appreciate it:

I went to work today, got about 5 hours of sleep, which is pretty good for me, and I had an energy drink in the morning but without food. I've done this before and wasn't concerned. However, I've been feeling symptomatic for the last 10 hours and I'm craving salt, which may not be connected as I crave it alot. However, I had some extra salty Mickey D's fries and they made me feel better. I'm not behind on my meds but I'm very disoriented - was saying words incorrectly and stuttering.

Any thoughts? Also, hello everybody.

[dfwtexas]

I am on Keppra too. I have been on it for almost 2 years now. I saw a huge improvement on it very soon, but still get a seizure once in great while and have had it upped several times. Next week I will be 3 month seizure free. Caffeine can be a problem with some people with E. I have always been big coffee drinker and caffeine hasn't effected me...until I had a red bull about 4 months ago...it definitely had my head spinning. I haven't had an energy drink since and no more problem with the dizziness
welcome to our group, lots of great supportive people here to help out
jenn

[Nakamova]

Hi jax22, welcome to CWE --

It's hard to know what's causing your disorientation, but it does sound like your current does of Keppra isn't doing the trick. I agree with Jenn that energy drinks can be a no-no, not only because of the caffeine, but because of the spike in energy it produces (that is, a quick "up," and a precipitous down). Tea, by contrast is more of a gentle hill in terms of how the caffeine enters and leaves the body. Your salt-craving is interesting -- I've experienced that on Lamictal. Maybe it's connected to the Keppra, although it may be related to something else in your diet.

You might not be particularly sensitive to caffeine or energy drinks, but one way to find out is by keeping a journal that tracks seizures and seizure-like symptoms, and also things like sleep, metabolism/diet, exercise, emotional and physiological stress, overall health -- anything that might potentially be a seizure trigger. If you can isolate a trigger then you can potentially avoid or eliminate it. For some folks here at CWE, that trigger has been gluten, and going on a gluten-free diet has helped reduce their seizures. You can search CWE for information about this and other diets, as well as things like neurofeedback.

I hope you get some relief from your doc. Feel free to explore CWE, and let us know how things go.

Best,
Nakamova

[skillefer]

Ok...sounds like low blood sugar might be a trigger for you. Stay away from energy drinks (they are high in sugar and caffeine...the caffeine is bad enough since it's a stimulant, but the sugar on top of that will spike your blood sugar and make you crash faster) What you are describing is exactly how I feel when my blood sugar is down. also, you really should get 7hrs of sleep if at all possible. sleep deprivation can trigger seizures.

[jax22]

While I am somewhat in agreement, energy drinks are not new for me. I've had 2 or 3 in one day and no symptoms.

Thanks for the warm welceome though

[skillefer]

You're welcome.

[Nakamova]

Sometimes these things can reach a tipping point -- I used to drink diet soda all the time, several a day, for many many years. But the aspartame in the soda was very gradually having an effect. It took an extremely stressful event in my life, and the resulting physiological stress (no sleeping, practically no eating over the course of a few days) to push me over the edge. On the day I had my very first seizures all I'd had in my stomach was a banana and two diet sodas.

[Ruth]

Hi jax, Welcome to CWE. It was made out of love by Bernard for his wife Stacy.

I take Keppra. I looked it up. It's most common side effects are dizziness, fatigue and insomnia. I have the insomnia. I wake up about 1:30 a.m and cannot go back to sleep.

Do you have any of those problems? My neurologist said to take Vitamin B-Complex, over the counter. I take 1 a day. It must deplete our Vitamin B. Caffeine is a trigger for me.
Welcome here.

[BuckeyeFan]

Welcome Jax

I am one of those lucky ones that can get away with coffee as well. Many/most can not as stimulants can be triggers.

I was on keppra for 5 years (along with dilantin) and did well with it until the last year, no major seizures, just a lot of side effects. These did not show up during the early years.

Like any anti-epileptic drug, keppra can cause a wide range of symptoms. Try to document these times recording diet, stress, sleep, etc.. to see if you can pin point a trigger (if this happens again).

[jax22]

Thanks everybody! I will definitely take all of this into account. I'm feeling much better and I guess I'll avoid energy drinks. I don't have insomnia, I actually sleep much heavier than normal (and I'm a heavy sleeper anyway) so I have a lot of trouble getting up in the morning.

[Nakamova]

I find that a shower first thing wakes me up! Then I have my tea...

[celesteam]

Hello! Glad you are here. It sure is helping me, finding others that understand.
We're all different, and I too know how things that haven't bothered you your whole life suddenly becomes a trigger for seizures. It has been hard to wrap my mind around that. Suddenly I can't eat Cheetos (My favorite), nor be under fluorescent lights (so long Costco!) ... how???? But it is true. Every since the seizures started. And caffeine?? Forget it. I can't even take Migraine pain relievers with caffeine in them because it starts things up faster than I could even have imagined. It's all hard to believe. I used to be able to do just 4 hours of sleep and get work done on my computer well into the night... ah, not any more. I have to get plenty of rest or seizures pull me under like a tide. But it took time to figure this all out and I did what you are doing, studied, talked to others and tried them one by one.

Here's what I have found out for myself... it's like Tetris. Did you ever play that game? As long as you keep as many "blocks" as you can off the surface then the "seizure blocks" don't stack up. However, if enough stack up then you can hit your personal threshold then voila'! For me it means that it is only a matter of time and I'll be having seizures. Kind of like when the blocks on Tetris start staking up like mad and you're trying to stop them from toppling and suddenly. Well, you get the picture. Hang in there. And take it easy as you figure it all out. I've found that there are a lot of really knowledgeable people on this site that can help. Welcome!

[Ruth]

And caffeine?? Forget it. I can't even take Migraine pain relievers with caffeine in them because it starts things up faster than I could even have imagined.

A long time ago, my neurologist told me, "if you want a headache, take an aspirin." He even had a sign up, and it is true.