the intro

[acidred3]

Okay, so this is pretty much the first time I have actively sought out others who may understand my experiences. I have been diagnosed epileptic, although I'm not thoroughly convinced. So to start, I'll give you my history. I have always been weak stomached, as in any type of physical trauma where blood or broken bones are involved makes me pass out. My first actual seizure happened when I was in college while camping. I was starting to not feel so well, and then I felt like I was going to pass out. Freezing cold and sweating, everything went black and white and it felt like I just sunk into myself and everything went blank. The next thing I know it sounded like I was coming up from underwater, my girlfriend was pulling me up off the ground and yelling my name. It took me a few minutes to pull everything together and figure out where I was and what was going on. Following that episode I started going through the MRIs and CAT scans and blood work, etc. Drs couldn't find anything wrong or out of place, everything came out normal. My second and third seizures happened about 1 year after the first, and they happened on the same night. The feeling was very similar to the first except when I came out of the first one I didn't know what was going on and went right into the next one. I went to the hospital immediately after that and again all the tests started again. Again, everything looked normal and they don't know why, but they diagnosed me epileptic and started me on lamictil, which gave me a huge rash all over my body within two days of starting it. I was then put on tegretol xr, which I am still on now. I haven't had any seizures in a year and a half now. I also have been having headaches daily, sometimes lasting weeks, ever since about two months before my first seizure. they also don't know why I have headaches. Okay, thats my book.

So can anyone relate? I feel like the drs dont know whats going on so they just put me on meds just in case.

[Nakamova]

Hi acidred, and welcome to the site!

There excellent resources here and different forums to explore. You can search for specific topics, or vent and chat as needed.

The diagnosis of epilepsy just means that you have had more than one seizure -- beyond that, it's something of a catch-all diagnosis. There are many different kinds of epilepsy and many varieties of experience, both in terms of the seizures and in terms of the treatment. The doctors do tend to medicate first as a precaution. Because your 2nd and 3rd seizures happened one immediately after the other, there was a potential danger of something called "status epilepticus" where you keep seizing and don't ever stop. So the medication is a way to protect you from that.

That said, medication is a very blunt instrument that doesn't deal with the cause of the epilepsy. Many people on this site have found success with alternative, non-drug approaches to controlling or eliminating their seizures. One recommendation is to keep a journal to try and identify potential seizure triggers. Tracking things like sleep, diet/nutrition/metabolism, stress, computer use, overall health, etc. can often pinpoint one or more factors that can contribute to the seizures. Your headaches may indicate an allergy or nutritional deficiency that may be relevant. You might want to search on this site about specific diets, or nutrients (like magnesium for example) that have helped others here.

Best,
Nakamova

[Meetz1064]

and how do you do, acidred? I do like that screen name, btw. Very humorous.

E is a pain in the ARSE. BLECH. I've had it now for almost 45 years. I'll share it with ya if ya want. *sigh*

Anyway, Nakamova's right in everything that she says. It is also important to note that some states require IMMEDIATE medication, even after the first seizure, and denial of your driver's license for a specific length of time to prove that you're seizure free. Evidently you're not in one of those states, so that's a good thing.

Nakamova also spoke of diets, and journals. I am a HUGE proponent of both. I used the G.A.R.D. diet for a long time, (still do, but in a stricter form as I have been diagnosed as a celiac) and it has helped with my seizure control. Others here use the Ketogenic, the LGIT, or the Modified Atkins Diet. Some others are also getting into a raw foods diet, too.

Our bodies can NOT handle certain neurotoxins very well, such as MSG, aspartame, caffeine, alcohol...and so those things need to be cut out completely, or limited to a very small degree.

If you would like, I will post a copy of what I encourage others to put into their journals so that they, and their doctors can find patterns to their seizures, and possibly find their triggers. Triggers can be as simple as lack of sleep, or as confusing as a visual trigger caused by shadows of trees on the road.

Btw, welcome to CWE. I'm sure you're going to like it here. There are plenty of nooks and crannies to check out, and friends to make. Lots of information in the Kitchen and Library, and a Padded Room to vent in, when you need to. So kick up your feet, and stay awhile. We'll be here.

Take care.

Meetz

[MrsDSB]

hello acidred. you sound a lot like me. i really am not to sure about the whole epilepsy thing. i have those feelings too. sometimes all day feeling like that and then have the seizure that night. it is something i am really having a hard time getting used to. i wish at times i would just have the seizure and get it over with. i also have days where the symptoms are worse than the seizure. i wonder sometimes if this could actually drive me crazy.

[acidred3]

Wow, thanks for all the quick responses and warm welcome.

My biggest concern with my seizures is now that I'm on meds for it, how will I ever know if it was just a couple random times and I will never have them again? I didn't have them until I was 20, so who is to say I will continue to have them? But then again, I am always concerned about having another one, almost to the point of obsessed/fearful of having another one.

Do others feel like that? Obsessed with when the next one will take over my own body. It is driving me crazy, you are not alone MrsDSB!

[Meetz1064]

The answer is an unqualified YUP. I try not to let it rule my life, but in many ways, E does. There are things that it can stop me from doing---many things, including both of my jobs. But only if I let it. I have to be determined to not let it stop me, and that takes stubornness, and I have plenty of that, too.....

[Nakamova]

After 2 to 5 years of medication you can try to taper off and see what happens. If your seizures were a short-term random event, then you'll find out for sure. Ideally you could taper off over several weeks to months, in a hospital setting -- nearly impossible unfortunately. I tried to go med-free after 2 years, unsuccessfully. That hasn't discouraged me -- I hope to try again in 5 years. At that point I may know even more about what my triggers might be, and how best to taper.

[MrsDSB]

a big right on!!!! i am so worried about the next one that i often wonder if it is a small part of the reason i have one. my husband said i was always a little on the crazy side anyway i am terrified to do anything but i don't want to miss out on life either. i can't just give up that easy. i'm too much of a fighter.

[acidred3]

a big right on!!!! i am so worried about the next one that i often wonder if it is a small part of the reason i have one.

Yeah, almost like a self-fulfilling prophecy, if you think it enough it may just happen! I have some OCD tendencies and I do think that I obsess over certain things too much, such as my seizures. I try not to let it hold me back, and I still do everything I want to, theres just that little fear in the back of my head that wonders what would happen if I had one right now. and I think it all the time with everything I do.

[Nakamova]

It can be tough to get past the fear. I've had enough seizures now that the prospect of another doesn't seem particularly scary to me (not that I'm recommending that you use this approach!). The fear of short- and long-term side effects of the meds ranks higher. I'd rather stay low on my dosage and risk a seizure than run the risk of overmedicating. (My neurologist and I disagree on this point, although so far I've proved her wrong. )

As a private person, getting used to having seizures in public has made me more fearless. I can't embarrass myself more than I already have, I might as well feel free to do as much as possible, without worrying about the consequences.

[RobinN]

I have some OCD tendencies and I do think that I obsess over certain things too much, such as my seizures.

There are some parents on another group list that are working with OCD issues in their children, but ridding the body of dormant Strep virus.

Just thought I would throw that out to the wind.

I was just looking for a thread about Willfully Bringing on a Seizure. Did two searches and can't find it. I'm in the middle of making a really good stir fry for the family, so maybe someone else can bring that up for me.

[joey]

I used to feel the same way, I think it took over my life, now I don't even worry about it just so I can get on with life. as long as I take my medications then I don't worry anymore. It sounds hard to do and it probably is. It took me 10 years to finally put it to the back of my mind. But then again I fear life more then I fear death, Don't listen to me though because I also think Im losing my mind.

[Cint]

It can be tough to get past the fear. I've had enough seizures now that the prospect of another doesn't seem particularly scary to me (not that I'm recommending that you use this approach!). The fear of short- and long-term side effects of the meds ranks higher. I'd rather stay low on my dosage and risk a seizure than run the risk of overmedicating. (My neurologist and I disagree on this point, although so far I've proved her wrong. )

As a private person, getting used to having seizures in public has made me more fearless. I can't embarrass myself more than I already have, I might as well feel free to do as much as possible, without worrying about the consequences.

I, too have had enough T/C seizures in public and am beyond being fearful of another seizure and the embarrassment. I do as much as I can, but I do take the meds at the dosage my neurologist recommends because I do worry about the consequences of T/C seizures. My first T/C seizure, I was on my way out of the shower, I fell and hit the hot water, suffering 1st and 2nd degree burns on my back, arm and side. I've had the brain surgery, the VNS many meds and still have some T/C seizures, falling flat on my face with black eyes and broken glasses. Sometimes I have auras, sometime not.
I also have diabetes, so I do watch my diet very carefully. BTW, I had epilepsy long before diabetes.

[joey]

It can be tough to get past the fear. I've had enough seizures now that the prospect of another doesn't seem particularly scary to me (not that I'm recommending that you use this approach!). The fear of short- and long-term side effects of the meds ranks higher. I'd rather stay low on my dosage and risk a seizure than run the risk of overmedicating. (My neurologist and I disagree on this point, although so far I've proved her wrong. )

As a private person, getting used to having seizures in public has made me more fearless. I can't embarrass myself more than I already have, I might as well feel free to do as much as possible, without worrying about the consequences.

Its not the embarrassment that concerns me, But when I am watching a new episode of family guy I would like to be able to watch the whole show without having to DVR everything.

[Bernard]

Hi acidred, welcome to the forum.

I know I'm a bit late to the introduction, but re: headaches in the OP - sometimes seizure activity is not completely controlled by medications. It's possible the headaches are manifestations of seizure activity that is being partially controlled.