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? :D

[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 :D

[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!:D

[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! :rolleyes:

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.

[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?

[RoadRaven]

Vince was a cyclist who rode every Saturday at our races.
He always rode at his own pace, and didn't race per se - though he often had the yellow jersey because he turned up every day.

He had epilepsy, and was unable to drive because of it, so he biked everywhere for independence and for fitness.

He was involved in a crash at a race just over a year ago and died from complications - not to do with epilepsy, but he was older and the crash was not good.

He rode and loved it and encouraged others - particularly younger cyclists. Epilepsy wasn't a barrier for him - or for those of us that rode with him.

All the best in your cycling goals

[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.