Overcoming sleepiness/tiredness trigger

[kirsten]

I've been tracking seizure times and I'm quite stunned at how blatantly obvious it is what's triggering my seizures: In the last 20 days, I've had four seizures after going to bed, four between 12pm and 2pm and three between 6pm and 10pm--those are my tired times.

It's not that I don't get enough sleep. I do. It's just my natural rhythm to lose energy then. Nothing to do with eating, either. And I need a higher seizure threshold and we're working on that.

For the moment, though, how do you make it less likely that you'll have seizures during your tired times of day?

 

[masterjen]

I can sympathize. My "weak" time is around 4 - 8 PM, moreso. if I've had a seizure in the past 2 nights.

Have you tried experimenting with your sleep schedule; such as going to bed earlier and up earlier then taking a post-lunch nap, for example? For me, frustratingly, this sometimes this doesn't work, because if I'm tired enough to need a nap in the daytime (usually because of a seizure) then the nap stage of sleep will often trigger a seizure but it might work better for you.

Another thought is to eat smaller meals more often - easier said than done when we're busy, but when I can do this I've found it sometimes helps combat post-lunch and post-dinner sleepiness. I just have to be careful to not pour on the carbs too much, as that will trigger my sleepiness in the day. Also I've found that doing my exercise session after lunch rather than before helps get me through my slump time better. Now that it is lighter out, I am trying to convince myself to also go for a short post-dinner walk as I know this can help me but it hasn't happened yet

 

[kirsten]

Thanks, Jen. These are great suggestions. I sleep at 9pm every night, but these days I've been going to bed immediately before I sleep, watching a movie instead of reading as I did before. I'm going to try going back to the reading because it relaxed me so much. I have to say, now that you're making me think properly about these things, that I always feel very ill by the time I go to bed, so TV probably is not setting me up for a good night at all. I'm also going to start adding my TV viewing to my seizure tracker.

I think I should change my exercise, as you suggested, to before I crash in the day instead of when I crash. Sort of silly now that I say it--I exercise at exactly the beginning of my crash, and just before lunch. Duh.

It's also probably related to meals. The phenytoin has really decreased my appetite so I eat as little as humanly possible and then, only twice a day. I'll make a change there, too.

 

[masterjen]

Great thought about the tv bit. I am the same: I can't go straight from tv or computer to bed. Even though the tv is not interactive like the computer, I still need some wind-down time after such as a shower, then read or even do a crossword puzzle in bed to help put myself into the right mode for sleep.

I'm battling the eating side of things, too. The medication I'm on now can cause GI issues like gas, cramping, etc. and it is worse in the evenings. I thought one or more of the meds must contain gluten (I have celiac) but apparently not. It is so hard to figure out what we can comfortably eat with these meds sometimes, isn't it?! As unbalanced a diet as it often is, some days it is easier to eat only foods we know we can tolerate - at least we are getting something!

 

[kirsten]

What I do when I'm making my best effort (which I'm not at the moment) is make really great salads and buy a ton of fruit. If I add seeds and avocado, they fill me up just fine and I manage to eat pretty easily. When I can manage it, I add tuna and eggs to get some protein into my system. And let's not forget sushi--easy to eat but not to afford. I think the carbs and meat are more difficult to get down. I guess I'm lucky in that sense, because in my country we have quality fruit and veg that doesn't cost the earth.

I take spasmocanulase for the cramping and bloating. I find if I take two dosages of two, I'm okay for days afterwards. I don't have celiac, so my experience won't be yours, but I do find that if I let the cramps go untreated, they just seem to collect on top of each other, but if I can treat them and get rid of them, they don't necessarily come back the very next day. When I'm visiting my mother, she forces me to take two teaspoons of baking soda in warm water. Works fine for a few hours but enough to make you throw up, and maybe too alkaline for our AEDs.

Do you have photosensitive epilepsy?

 

[Ruth]

I have photosensitive epilepsy, kirsten.

Have you been tested for Diabetes? That was causing most of my seizures. One of the complications of Diabetes is seizures. I was having status seizures and they tested me for Diabetes to rule it out. I have it, Type 2.

When I am tired I test to see if my BG is too high or too low and then I adjust my food.

It is a simple blood test to rule it out. I have not had status seizures since then. I had no symptoms of Diabetes at all.

 

[Cint]

Ruth,

If you have photosensitive epilepsy, then how does Type 2 diabetes be the cause for your seizures? I don't understand how they BOTH can be the cause.onder:

I have Type 1 Diabetes and only once have I had a diabetic seizure because my glucose level was below 40. And I definitely DO experience diabetic symptoms; sleepiness, blurred vision, shakiness, grumpiness--if my glucose level goes below 70. One's glucose level has to be really HIGH or really LOW in order for them to go into a status seizure. Are you sure that is what your doc told you? Sounds to me like you have E + Type 2 Diabetes, which can be controlled by diet. Even tho I take insulin shots to control my Diabetes, I do watch my carb intake also.

 

[kirsten]

Yes, Ruth, I've been tested for diabetes. My doc clearly gets suspicious about it often because they keep running the test every few months. Definitely no problems there, although I will say that with my terrible appetite at the moment, I'm not eating nearly enough which is probably to blame for a lot of those tired times.

I was asking about the photosensitive epilepsy because I have seizures from flashing lights and computer screens sometimes and I think my evening TV might be to blame for so many of my seizures being nocturnal. Also, by the time 13:00 comes around, I've already done a rather long stretch of work, so I've been looking at my monitor for six hours already.

I used to go into status a lot but not anymore. Maybe my epilepsy improved. The status used to happen when I was diagnosed 18 years back and it hasn't happened to me with this bout of seizures at all--not that I know of anyway.

 

[masterjen]

Hi, Kirsten
Many thanks for telling me about Spasmocanulase. It is not sold in Canada, at least under this name, but when I looked it up I noted that the manufacturer is Novartis, which does supply drugs to Canada. Maybe it is sold here under a different name; I will check with the pharmacist. Again, thanks:hugs:

I do not have EEG-diagnosed photosensitive epilepsy (ie. the strobe light test didn't trigger any seizure activity) but just based on my own observations I am suspicious that something about light it is a "compounding trigger" - for example if I haven't eaten well, overworked, and then play a video game and/or watch anime for more than an hour or two I will tend to have a nocturnal seizure. In the days of poorer seizure control, on some lazy Saturdays I used to play video-games/watch anime for up to 4 hours cumulative over the day and that would almost always cause an issue at night even in absence of other obvious triggers.

I like your salad suggestions! I am finding meat hard on my system also, and it's only been since this new medication. Chicken and occasionally salmon have generally been my main sources of dinner protein but now I have a tough time with them and have no idea why the change. I've never tolerated beef or pork well. In addition to the salads with vegetarian protein additions, I'll start trying more white fish in my diet and see if this is any better. Thanks for the ideas!

 

[kirsten]

Just a little lightly seared tuna gives you so much more than a huge steak ever could, and I find if I add wasabi it is so much easier to manage. I find white fish to be too dry so I go for the oily fish, which I find to be lighter somehow. Better yet, they have the nutrients, whereas white fish isn't that much of a superstar.

Spasmocanulase has a bunch of different medications in it, so if your pharmacist can't help, let me know and I'll give you all the ingredients.

My salad advice: Roasted pumpkin seeds, sesame seeds, and sunflower seeds all mixed up make everything better! Sometimes you can just buy them ready roasted or sundried at the store. In fact, my stepfather just used to lay them out in a pan in the sun himself. Easy as that. Er...if the birds don't get to them first.

 

[masterjen]

Thanks! I'll keep you posted on how I do at the pharmacy.
I'm drooling thinking about my dinner salad

 

[Ruth]

Ruth,

If you have photosensitive epilepsy, then how does Type 2 diabetes be the cause for your seizures? I don't understand how they BOTH can be the cause.onder:

Cint, my photosensitive is flashing lights, strobe lights during an EEG. It is not the cause of my seizures, it contributes to my having a seizure. There are many causes for epilepsy. It is the same with Diabetes, if I keep it under control, I do not have seizures. Since I have been diagnosed, I have not had status seizures since.

My real cause is that I inherited it from my Father. My sister has epilepsy and 2 of my sons have epilepsy. My father had epilepsy, as well. A lot of my family members have it.