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  1. #1
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    Anyone dealing with Epilepsy? Taking meds?

    I've been diagnosed with Epilepsy and I am taking medication. Is there anybody else out there mountain biking while taking medication to treat epilepsy? Just wondering how you're doing with it. I've just started taking medication recently and things seem ok. I have to be seizure free for 6-12 months before I can drive again. My seizures are infrequent and my last blackout was Aug 20 of 2012, although I have had a couple of seizures since then, but so far not while on medication. I've been on medication for a little over a month.

    What is your experience?
    Last edited by morkys; 04-09-2013 at 11:47 AM.

  2. #2
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    I had epilepsy for the past 25+ years. The irony is that it was onset due to a bicycle accident while not wearing a helmet. Early on, I was not very consistent about taking my meds and continued to have seizures, but once I got close to driving age, I took them religiously. Although I have had a few over the years, I have done well overall. Most of my seizures are petit mal but I occasionally have had grand mal. I have had to make several changes to my meds as my body got used to the medications and became less effective. Depending on the state you live in, there are different requirements for semi or annual evaluations.

    I have been riding bikes off and on for years and just got back into mountain biking in the last year. I have also been release do scuba dive as well and haven't had any challenges.

    For a lot of people that have epilepsy, they experience an aura prior to having seizures. Me being one of them. I also have times when things "just don't feel right." Anytime that occurs, I stray away from driving or riding and just try to sit down and relax and depending on how "off" I am feeling, I may take and extra dose of meds.

    One thing that has helped me tremendously is using XR or time-released meds. These give a consistent dose throughout the day so if I am running late or forget a dose, the impact is minimized.

    The one bit of advice I would offer you is not to be afraid to discuss it. Make sure whomever you are riding with is aware of what's going on. I don't just blare it out to the world like I am doing now but I do make sure whomever I am doing anything with is aware of my situation and how to handle it.

  3. #3
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    I have not actually had a positive test for epilepsy, but...my "episodes" are quite indicative of epilepsy. From what I and my neurologist can tell, I have complex partial seizures. I could go over my history, but suffice to say, I had one blackout in 2011 and three in 2012. My last blackout was in Aug 2012. I had a seizure without blacking out in Dec of 2012 and Feb 2013. I started taking medication shortly after my last seizure in Feb.

    My warning "aura" is a very strong and fairly intense feeling of deja vu and it's usually totally un-related to what you are doing. You experience deja vu about unrelated things. It's like you are un-intentionally daydreaming and cannot stop it yourself. I would not be surprised if you have similar experiences.

    I have felt "bad" and/or felt an "aura" while driving or cycling, but I did not black out. Of course, there is no guarantee, so I am on medication.

    I am taking 400 mg of Tegretol (200 mg in the morning and 200 mg at night). I have been taking it for just over a month. My seizures were very infrequent, so I've got to wait at least 6 months and go from there.

    If you don't mind me asking, what medication(s) have you been taking or have taken?

    thanks for the feedback,

    Last edited by morkys; 04-09-2013 at 12:27 PM.

  4. #4
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    Before I was officially diagnosed, I had similar episodes that you are having, essentially petit mal seizures where you don't black out, but lose track of time and reality. The aura is exactly like you describe it as well. I have had a few grand mal, but they have been few and far between.

    I have used several throughout the years including carbamazapine (generic tegretol) for the past 10+ years which changed to 1000mg (500 morning/5000 evening) of Tegretol XR (timed release) which is only available as a named drug.

  5. #5
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    Wow. Interesting. I have read about carbamazapine and it's interesting. I will ask my doctor about the timed release. I will also look at reducing my triggers. I am pretty sure lack of sleep is one of them. Also, stress and anxiety, and/or general excited frantic behaviour. Just rushing and thinking too much.

    If you have any more feedback or advice regarding meds, experience, side-effects etc, by all means let me know. For instance, have your meds interacted with anything or any other meds or nutrition etc? How have you found carbamazepine in terms of exercising and cycling?

    Thanks again and I really appreciate the feedback.

    Quote Originally Posted by mast3rof0 View Post
    Before I was officially diagnosed, I had similar episodes that you are having, essentially petit mal seizures where you don't black out, but lose track of time and reality. The aura is exactly like you describe it as well. I have had a few grand mal, but they have been few and far between.

    I have used several throughout the years including carbamazapine (generic tegretol) for the past 10+ years which changed to 1000mg (500 morning/5000 evening) of Tegretol XR (timed release) which is only available as a named drug.
    Last edited by morkys; 04-09-2013 at 05:58 PM.

  6. #6
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    As for the triggers, you mentioned most of the ones I can think of. Strobe lights is another one that will trigger them as well.

    From a dietary perspective, large amounts of citrus can have a negative impact. Carbamazepine and tegretol can also cause osteoporosis, so you may have to get tested yearly for that as well. The good part is that mountain biking and exercise in general strengthen bones.

    In my current state taking Tegretol XR, I am doing well. Can drive, dive, mountain bike, you name it. No negative side effects. In fact, to my earlier point, it actually is beneficial to exercise and be active.

  7. #7
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    Having my CBC done regularly as I start this and neurologist suggested once a year bone scan. I am going to ask my family doctor and neurologist about taking a multi-vitamin. I am also changing my diet to very little artificial sugar. Lot's of fruits and veggies, poultry and fish, beans, nuts. Healthy stuff generally. Strobe lights don't seem to bother me so far but I have not exposed myself to them recently.

    Quote Originally Posted by mast3rof0 View Post
    As for the triggers, you mentioned most of the ones I can think of. Strobe lights is another one that will trigger them as well.

    From a dietary perspective, large amounts of citrus can have a negative impact. Carbamazepine and tegretol can also cause osteoporosis, so you may have to get tested yearly for that as well. The good part is that mountain biking and exercise in general strengthen bones.

    In my current state taking Tegretol XR, I am doing well. Can drive, dive, mountain bike, you name it. No negative side effects. In fact, to my earlier point, it actually is beneficial to exercise and be active.

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