new guy intro

[sabine]

Hey yall im new here. As a quick background i was diagnosed back in probably 2000-02ish as an epileptic. About the same time i was getting really bad headaches as well, later we learned those were cluster headaches. Those are just about as fun as the epilepsy.

Right now im 23 years old, male and other than the joys of having an overactive brain im in great shape. I run every other day and am currently taking two different martial arts to keep my mind off of the bs of epilepsy and the headaches. However the epilepsy has been acting up lately hence why i joined, maybe i can learn a little bit, also i need to vent to some people that know where im coming from.

Oh and if youre wondering my screen name came from i looked around my room and saw my metronome, im not very clever on the draw like that.

[epileric]

There's a lot of people here who get headaches as well. I'm sure they'll introduce themselves & maybe even have some suggestions.

I think you were smart to get into martial arts. They say to be careful when exerting yourself because the stress & hyperventilation can trigger a seizure. That being said the exercise raises your level of endurance & learning to stay focused help prevent/stop seizures. Have you considered meditation?

Meanwhile check out all the rooms on the site. We've even got a padded room if you need to vent.

[sabine]

Not to treat the epilepsy i havent. I have over the years learned to meditate because it is the only thing that works with the headaches. Ive been prescribed every pill on the planet for them and none of them work. I was inspired by the monks that would burn themselves to protest the vietnam war. Cluster headaches are by far the most painful thing ive ever experienced and i wouldnt wish them on kim jong ill or ahmedinajad. And i really dont like those guys.

[Nakamova]

Hi Sabine, and welcome!

Have you looked at dietary triggers for your headaches or seizures? Some folks are affected by food allergies, or by reactions to MSG, caffeine, aspartame, etc. There's a lot of information and interest here in ways that modifying diet can raise seizure threshold.

Best,
Nakamova

[Meetz1064]

Also, one of the ways that I help control my migraines (and I have just about every type there is) is to take magnesium. Start out at a low dose, and work your way up...to 1000 mg if you can handle it. (loose stools will be the side effect if you can't. Sorry if TMI.)

Welcome to CWE, by the way. I'm sure you are going to love it here. There's plenty of support here. Lots of friends to make, and information to find. Check out the Library and kitchen for tons of information, RobinN and Zoe are the nutritional gurus around here.

And make sure you keep an E journal! It will definitely help you find your triggers....

Take care,

Meetz

[Bernard]

Hi sabine, welcome to the forum.

Make yourself at home here.

[RobinN]

Not to treat the epilepsy i havent. I have over the years learned to meditate because it is the only thing that works with the headaches. Ive been prescribed every pill on the planet for them and none of them work.

I too was prescribed every drug for migraines that continued for 30 yrs. Then one day a doctor asked me to try ionic magnesium. I have been migraine free for 4+ yrs. I now am trying it in pill form called Jigsaw Magnesium. It seems to be working just as well. My daughter was also prescribed this by her neurologist. She knew that magnesium was an anti-convulsant, but she did not know anything about the different varieties.

http://www.jigsawhealth.com/

I do not have any personal connection with the company. I only offer the link because I am currently taking the product, and having positive results.

[sabine]

Thanks for the advice, ill look into that. However as i said i dont exactly get migraines i get cluster headaches. They are a bit different, i dont get any visual disturbances. A girl i know gets them pretty bad and she said that was the worse part is she loses her vision, i dont get anything like that, just really debilitating pain.

[Nakamova]

Hi Sabine --

If you haven't tried indomethacin for your cluster headaches, you should ask your doctor about it -- it seems to work for a lot of people. Another drug which has shown success with a slightly different kind of intense headache pain is Lamictal. (If you're already taking a different anti-epileptic drug, that might be problematic).

Best,
Nakamova

[darcness]

My wife had horrible cluster headaches as well. She too tried every medication but nothing seemed to work, or caused her to get ill from side effects. It got really bad before her last t-c and there were a stretch of about 3-4 days that she had a continual headache and she vomited many times. It got so bad that we had to go to the ER. Soon after, she had her 3rd t-c.

From everything I've read there seems to be a direct link between headaches and E. My wife is now on Depakote which not only controls her E, but takes away most of the headaches as well. She still gets them during her monthly cycle, but that's about it.

If you're on meds, and the headaches are acting up, along with the seizures as you already stated, maybe there is a link. Might be misfiring neurons causing both. Find a way to treat the E and hopefully the headaches will ease as well.

[sabine]

Depakote was the first thing i was put on but it didnt work for me. I completely agree with you, theres gotta be a link between the two. Has your wife tried 02? The dr hesitated giving me a prescription for it he said he didnt see how itd help but it is 99.999999% better than anything ive tried. Ive had all the pain pills, imatrex, etc. None of that comes close to the oxygen. And oxygen isnt habit forming, dosnt harm your body, and is incredibly cheap.

Between that and meditation ive adapted to my headaches really well, problem is if i have them when im out and about then im kinda screwed. I cant stress enough how oxygen has saved my butt again and again. You have to use it at the onset of the headache though. If she hasnt tried this please tell her to ask her dr about it i cant stress that enough, nobody should have to live with that kinda pain. I know what shes going through, i once started hallucinating from one of them after i vomited and before i passed out.

@Nakamova I literally just started Lamictal yesterday, good timing for that post

[darcness]

I'll talk to her about it sabine, thank you.

I just wish she was more open to treatment. Sure she will take the meds that the doctor gives her, but outside of that she doesn't understand how important other things are. Ie, good sleep, low stress, etc. I wish she would come on here and join, but she's resistant to it. I'm going to keep hammering away at it and see if I can eventually change her mind or convince her to do more, but sometimes it seems like a losing battle.

It's her body and her choice and I respect that. I guess if she was like me, she probably would have had a nervous breakdown by now. Heck I did and I wasn't even the one with E. I suppose we make a good team. I do all the worrying and she does all the easy stuff. I wouldn't really have it any other way though. She doesn't need to have stress on top of her E. I can handle it, so it's better for me to do most of the research, make suggestions, and let her do what she wants with them.