Any epileptic cyclist out there??

[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.

[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.

[luv2ride94]

Wow there are alot of awesome cyclers with Epilepsy. Thansk everone for sharing with me!

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?

Cool. Happy b-day to him! You guys do anyhitng fun today to celebrate?

Actually this weekend has been pretty good, yesterday we went to visit my sister and niece who just started crawling so that was pretty fun. And since shes beautician i got my hair cut and talked mom into so new colors to have foiled in! Then last night i went with my bro in law to see a friend of his thats a awesome rock climber only to figure out i had been set up and this dude is a epileptic and that was the point of the whole trip. But it was cool we went to dinner and i got to ask him a bunch of good questins and get some good anwers.


The bike i hvent actually seen it but the lady at the bike shop says its pretty messed up but hopefully she will be able to get it to ridable shape. i'm crossing my fingers atleast.

my injurys arent to bad, my arm is in a cast and some stitches and pretty ugly road rash but it will all feel hopefully smoother than last time.

Does your son ride with you and Mr?

[meghabox]

Welcome to the E Club! For the last four years I thought I had epilepsy. I was about to have brain surgery, and then in the last several months it was discovered that I was misdiagnosed with epilepsy and have an odd form of migraines....but anyway I am still very much involved in Epilepsy research, the epilepsy community, and am currently applying to medical school so that I can devout my life to epilepsy and neurology, so I may not have epilepsy anymore but I well versed in the subject. If you haven't had a generalized seizure or blacked out for a significant period of time then you should be o.k. to ride...since I don't know your diagnosis exactly and I am not a doctor, just make sure you discuss it with your doctor and see how your react to your drugs before doing anything to outrageous. I would given him/her a phone call and talk to him about your concerns and ask if you need to take a break from some sports for a while. You may have to switch drugs several times, and it could take a few years (yes years) to find the right combination of drugs. Don't be afraid to speak up if the drug you are on impairs your ability to ride or function (makes you sleepy, dizzy). There are other drugs, and your doctor will be happy to work with you. A good neurologist will take into consideration your lifestyle, etc. when helping you choose a drug.

Also, it's VERY IMPORTANT that you get a MEDICAL ALERT bracelet, that way if you do seize while riding people will know what's going on and the paramedics can get easy access to your records. For a few extra dollars you can get one that looks like regular jewelry. If you just started having these spells and they seem to be varying in form, for the next few months while you adjust to new medications I would stay away from bike paths near high speed traffic that way if you fall, you're not likely to get hit by a car. And always wear a helmet!!! Most people with epilepsy lead normal lives. Since you were just diagnosed, I would suggest you hook up with the National Epilepsy Foundation. They can link you to a support group. The whole diagnosis can be almost more overwhelming than the symptoms themselves sometimes, especially because it's a very misunderstood condition in society. Don't worry though, your not alone. Feel free to PM me if you have any questions.

[LBTC]

Luv2Ride, a new diagnosis is a really tough thing. I'm not epileptic, but have spent some months struggling back to health after a diagnosis of Crohn's. I've depended heavily on the support here at TE, on some simple routines like sending a photo out every day, no matter how I was feeling, and starting every work day with yoga. And I've worked closely with health care practitioners. Once the specialist told me he couldn't help me I have worked only with a naturopathic practitioner, an acupuncturist and an integrated massage therapist (yes cranio-sacral therapy is amazing!). Some days have been dark, and you may have those too. Remember that you will get through this and that others have gone through this or similar things. We're here for you. And if you think you'd like to receive a photo in your email each day to shift your thinking from whatever the burden is that day to something beautiful, even for a few moments, PM me with your email address and I'll add you to the list. Oh, and visualize butterflies. I'm sending them to you now.

Hugs and butterflies,
~T~

[violette]

I've had epilepsy for 9yrs. I'm taking "Lamictol" and never had seizures since. If they can find the right meds., you'll be ok. Just make sure to always take them. As soon as I forget to take my meds, I'll have a seizure.