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I was just diagnosed with adult epilepsy and have been placed on dilantin to supress further seizures. Is anyone else racing or training with epilepsy or have any feedback on what dilantin is doing to them or a better pharaceutical option. My biggest fear is being in the pool or lake and having another episode.
thanks
Barry
Yes...
I did poorly on Dilantin...better on Keppra and Neurontin as it will not cause your teeth to fall out and gums to bleed. I have little time now and will follow up later.
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What if the Hokey Pokey is what it is all about?
I don't have epilepsy but just want to encourage you to talk with your physician re your plans. For safety sake you can cover the bases while at the pool, talk with the manager and get his buy-in and ask how to get the guards on-board. At races I'd be up-front with the rd. "I've got epilepsy, I don't plan on having a seizure but I'll need the assurance if I do someone will be right there to help, can you accomodate me (?), do I bring my own kayaker?" Duathlon and team tri's could be a fall back position but you could have a sz on the bike as well, for that matter at anytime/anypalce....so you'll be doing risk-benifit analysis whether your training-racing-or walking down the street. Hope and pray the meds will take care of it and wisdom re your plans.
My wife has been on Dilantin since her brain surgery (no seizures, she's on it as a preventive measure). Her neuro actually recommended that she start swimming again (though only with someone around). I would be much more concerned about having a seizure during a bike race (or the bike leg of a tri) than the swim. You can have someone swim (or paddle) with you. Not much you can do to make the bike safer.
I would be interested to hear about other people's take on training (and life in general) on anticonvulsants, particularly Dilantin. I don't know much (though we're trying to learn as much as we can). The one thing I know that you should think about if you just got put on anticonvulsants is that you need to get your levels checked often at the beginning until you establish the right dosage because everybody's body (and proper dosage) is different. Don't be surprised if you see some weird neurological side effects while your body gets used to it and until you get your levels right. Those will diminsh and some will go away altogether after a while.
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Anyone who tells you they're as fast now as they were when they were 18...
sure wasn't very fast when they were 18.
From what I understand (and have personally seen) - some RD's will not allow you to race if you have a history of seizures. With seizures some people will get what they refer to as an "aura" where they can feel a seizure pending and will be able to get to a safe(er) place.
On Dilantin with "thereputic levels" (dosage depending on your body) training for me was damn near impossible (900mg a day). Most will notice rapid swelling of the gums, as well as rapid hair growth (especally facial hair). My Nerulogist had said that she tries to NOT give women Dilantin as it will cause many women to get hair on their cheeks (weird huh?).
I also ended up on Keppra, and Nerontin (how ever you spell it). THEN - they will cause issues with your other neurological systems and possibly create other issues (with me it is SEVERE osteopenia..or mild osteoporosis).
Today, I am off all the meds (AMA). I have decided that if I have a long time to live...and not be alive, I would rather not take the meds...-vs- possibly getting a shorter life off of the meds and felling "normal" and not having the side effects of the meds.
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What if the Hokey Pokey is what it is all about?