Any epileptic cyclist out there??

[luv2ride94]

Are any of you Epileptic and still ride? They havent made it official yet but thats the general thought of what they think is causing my blackouts..

I have been doing a lot of reading online about it and everyones is different and anywhere from really bad and they cant do anyhting normal or the ones who say it doesnt effect them in anyway. I want to know what its really like and all anyone wants to talk about with me is to tell me not to worry and take it one day at a time and be reasonable and listen to the doctors. the sounds easy enough but i think im about to go CRAZY.

I just want to know if i will still be able to do the things i love. Swim, ride my bike and be somewhat normal...

[silver]

Kt, I don't have epilepsy. I can't help you with info on that. I'm sorry that you are going through this. It must be really overwhelming.

Are you able to do any of your activities this weekend?

[KnottedYet]

Hey, kiddo!

My brother is epileptic, and he rides his bike everywhere. He even rode by himself all through Europe for 6 months. The guy even got a speeding ticket ON HIS BIKE in our hometown!

Hang in there, be patient. Your docs will probably put you thru a bunch of tests and then figure out some medications (probably with some trial and error, but hang in there) that will calm down your blackouts.

Honestly, trust that it won't be the end of the world. It will work out into something you can manage.

Meanwhile, hold off on the things the Doc tells you to hold off on, and be patient while the folks figure out how best to handle your epilepsy. (easier said than done, eh?)

Keep us posted, ok?

[luv2ride94]

Thanks knotted -- That makes me feel lots better that maybe someday things with get back to normal or atleast cloese enough. im ready!

The doctor actually said i didnt really need to worry to much about activities this weekend, just to make sure i am not out by myself doing anyhting strenuous(sp??) but i think maybe he just said that b/c since im in a cast i cant do much

[Wahine]

KT, I have had several friends with epilepsy, most of them drive and lead perfectly normal lives, they just have to take med.

One friend developed epilepsy related to a head injury from a car accident. Since then he has gone on to do Race Across AMerica 7 times and holds the 2 person mixed team record with his lovely wife. They now have a 9 month old daughter and he's training for a 575 mile race coming up in October.

They'll get it all sorted out. It'll take some time but you'll be able to lead a very full life.

[snowtulip]

luv2ride,
I am epileptic and would love to talk with you about anything that you are concerned about, please PM anytime.

I live a pretty normal life, sometimes there are cycles where I'm not as active, but I look at that like anything in life. (work makes you not as active, family, etc).

I mountain bike regularly, I drive (although there are times that there are driving restrictions), I work (too much), etc.

The key for me was finding a good doctor and finding good medication. I have been through quiet a few different meds and have finally found one that is great, but meds work differently for everyone. It took some adjustment time.

I recommend finding a supportive environment (like TE), I went to a few epilepsy support groups during some of my dark days and had to stop because they were too depressing, same with the epilepsy support boards; too depressing that they were sucking life out of me rather than shedding some light on my life.

When I was tired, instead of doing long mountain bike rides, I started going to the bmx track and learning how to jump, drop, etc. As hard as it might sound, look at the glass half full (I know it can be difficult).

Please let me know if you want to talk about any of this, it can be scary, but hopefully some of my experience will help you.

I'm off to mountain bike!

[Tuckervill]

I recommend finding a supportive environment (like TE), I went to a few epilepsy support groups during some of my dark days and had to stop because they were too depressing, same with the epilepsy support boards; too depressing that they were sucking life out of me rather than shedding some light on my life.

+1 for that.

For some reason, sometimes "support groups" become dominated by the people who just can't overcome, and there is nothing positive going on there. The positive people who do come can't carry the group and the weight of their own battles, so they move on. I see this on weight loss boards. Lots of people with no real commitment spend all their time talking about it instead of doing it! That can make inspiration and motivation hard to come by.

So, Katie, be careful where you get your information. If it doesn't lift you up, find something that does. You're a 'can do' kind of gal--don't let anyone tell you you can't.

Karen

[Mr. Bloom]

In my teens, I had a seizure disorder that remained undiagnosed, but I was medicated for epilepsy. I'm perfectly normal now - at least physically.

But, it caused me to have to do considerable research on epilepsy and fI f
found that it's a very misunderstood disease.

Don't let this "shake your confidence". But, if it does, move your workout indoors so you can rebuild confidence in a less threatening environment.

You WILL be OK, You will NOT have to quit doing things you love. You just need to prove all that to yourself.

[silver]

I'm perfectly normal now - at least physically.

Mr. is NOT currently, nor has he ever been PERFECTLY NORMAL!

Jeez! anyone who knows him knows this!

But even though he's not "perfectly normal" he is handsome and very charming!

[luv2ride94]

A few days ago the word EPILEPSY scared the crap out of me. But after reading all the stuff on here and talking with a few people who know what it can really be like and that still do things that I love I know ill be alright. Its still a little scary and im still hoping its not the final diagnosis when i go back monday. But if it is oh well. Life goes on. You all are the the BESTEST!

[silver]

Keep up the positive thoughts! Have you had more blackouts? Were you able to do anything fun today? silverSon has his 14th birthday tomorrow.

What are your injuries from the wreck? And what's the word on the bike?

[Aggie_Ama]

I do not have epilepsy, but I have movement disorder that requires epilepsy meds. I cannot encourage you enough to get in the care of a good neurologist that will listen to you; maybe you can even find a clinic deditcated to epilepsy. They will understand you desire to live your life and work to make that happen.

My first neurologist had me doped up on a medicine that made me seriously depressed and refused to take me off because "it was working". Yeah, I wasn't shaking but I didn't want to get out of bed either. Anyway, I know a couple of epiletics and they are able to do the things they want with minimal restrictions. It definitely is not the best or worst diagnosis.

[Brandi]

I am epileptic. But I have not been on the medication or had a seizure in years. They said mine was due to stress and bad sleeping habits. I went through a lot test and they never found anything like a leasion on my brain or anything like that.
But I thought I was going mad when it was happening. People would be talking to me then all of sudden it was like they were talking backwards and i could not respond no matter how hard I would try. Then the people who were talking to me would say I blacked out. The strange thing is I don't remember ever blacking out. I woke up with awful headaches in the morning. Turned out I would have grand mal seizures in my sleep.
I found the the medication did help. Eventually my life changed and the stress lessend I also learned to deal with the stress. yoga helped a lot!
I would still ride as long as your Dr says it's ok. And the medication is controlling it. Get plenty of sleep and try and not stress. If you need to talk pm me. it can be scary I know.

[amy]

One of my dearest friends has epilepsy. He is not a cyclist. Just a lazy guy... all he does is surfing, kite boarding, spear fishing, kayaking, rock climbing... While I've never biked with him, I've repeatedly trusted my life with him on rock climbs that half way up I thought to myself "WHAT ARE YOU DOING???? THIS IS TOO HIGH!!" But that was about my own personal panic, not about him at all. He has learned his body over the years and understands when he can and cannot push. And in my mind, has defied all logic as to how hard any person's body can be pushed, let alone a guy with epilepsy.

I'm actually an occupational therapist in both traditional and alternative settings. You might look into CranioSacral Therapy if you're interested in a non-traditional option. I'm always really excited to see clients shift out of experiences their doctors said they would always have.

[HillSlugger]

My cousin's ex is an avid biker and an epileptic. He's been pretty well controlled by meds and has no limits on what he can do.