Alohabird,
Thanks for all that info! And I don't know if I used the wrong term or not, or exactly what did happen, but she and a bunch of other people said that my face went blue and that's when they realized I wasn't breathing and that my tongue I guess was blocking air from coming in? And that's when she looked in my mouth and freaked out and stuck her fingers in there. EITHER WAY! lol I am happy she did whatever she did, because I'm here. I mean, I also didn't know that you stopped breathing during seizures. And oh yeah, her finger did get badly bitten! That's for sure. I will definitely let her know that though. And cutting out coffee is going to be super tough. I did ask this new neurologist about dieting, and the keto diet. (My friend's daughter has cerebral palsy and has seizures all of the time. They put her on that and it has helped an INSANE amount.) My neurologist said that dieting is insanely tough and the results vary from person to person. I'm still doing research on it. I know alcohol is a big one, and that's fine with me, I don't really drink much. I just find it weird that it all started at this point in my life. Did your doctor give you any reason why it started around that age for you? I really don't get it at all. Please get back to me! And let me know! Again, thanks for all that info!!! And I agree with that no making me an epileptic! But apparently, that's not how my doctor is looking at it. -____- So I'm kinda trapped in this for now.
You're welcome. I just wish this info had been available to me when I was your age.
About the first aid. If people are sticking fingers or spoons or whatever in your mouth, it can actually make the breathing problem worse by getting in the way. As you are coming around and starting to breath on your own you could actually choke on whatever in being shoved in your mouth. Putting you on your side gets the tongue out of the way naturally.
A lot of people will fight you if you get between them and their java in the morning but that is just further proof that it is a drug. If, years from now, you figure out that you can have a cup now and then without the seizures coming back, then fine, no big deal. But for now treat it like the neurotoxin that it is.
Neurologists really know pathetically little about nutrition and dietary means of controlling epilepsy. A great basic primer on the modern version of the ketogenic diet is "Keto Clarity" by Jimmy Moore. It is not insanely tough. Having seizures is insanely tough. Living with the side effects of AEDs is insanely tough. Giving up junk food and gluten is easy. The results vary because some people don't have the spinal fortitude to put down the friggin pizza and soda. The results are remarkably consistent if you are consistent about it.
My doctors never had a clue why I had seizures. I have figured out in 20/20 hindsight that it was a combination of junk food, caffeine, sugar, sleep deprivation and stress (senior year in college) that got mine started.
You are not trapped in anything. Your doctor works for you not the other way around and don't you forget it. You control the decisions for your body, nobody else.
Nakamova,
2. And even though that trigger fact is unknown, go figure when I try to be a responsible adult, it dicks me over! I told my doctor about that when I spoke to her, and she kind of brushed it off, not even going into detail about if that could have been a factor or not because it's not legal, so I don't think I'll get any information about if that may have played a role in it or not from her. But thanks for that info too! All the questions I've been getting so far were mostly "Did you notice anything off about that day" not about any type of long term trigger I guess is what I'd call it.
Yeah, you might want to google the CNN documentary by Dr Sanjay Gupta called "Weed". And the cover article of National Geographic this month is called , "Weed, The New Science of Marijuana". The tide is really turning on this issue. I think it will be legalized soon.
For those of us with E, we have to be careful to find a strain of weed that is high in CBD (the medicinal part) and low in TCH (the stuff that gets you hammered). The opposite kind is what has been selected for by growers for a long time but that is changing too as the high CBD varieties are becoming more in demand. A high TCH strain can actually cause seizures so, if you indulge, make sure you know what you're tokin.
While we wait for the legislature to pull their collective head out, there is something legal you can do called CBD oil (available on Amazon). It comes as capsules, a spray in the mouth and a concentrated sublingual oil.
Nak is right that the triggers can be cumulative. Like I can get away with
ONE sweet treat
OR ONE glass of wine
OR ONE night with too little sleep, etc. but if it is more than one and the ORs start turning into ANDs that's when the trouble starts.
Keep asking questions. And keep a list of questions for when you see the doc.