IRONMAN AND SEIZURES. IS IT FEASIBLE?
IRONMAN AND SEIZURES. IS IT FEASIBLE?
Those of you that know me might be asking “why in earth would Juan be asking about seizures a couple weeks after successfully completing his first KONA?”.
Well, that’s exactly what I asked myself when I left hospital this morning after having gone through an unexpected (to say the least) first ever seizure experience (out of the blue!!!).
Not that I remember much (if anything) but the expression and the fear I see in my loved ones (namely my wife Karla) tell me it was no pretty sight and it needs to be managed smartly ….. very very smartly !!!
As of today there is not much I know other than my IRON-CAREER “might” have to go under major review (honestly the doctors did not know how to react to that which was my first question: “can I train and race again"?)
I will be visiting all types and flavors of specialists over the coming weeks, in search for smart strategies to get me back on my saddle (whichever that saddle might be) and I am sure that rather than keeping it to myself (nothing to be ashamed of) I will find lots of smart questions coming from this forums to asks my doctors!!!!
#nevergiveup #harworkworks
Comments
First off, so sorry to hear about the sudden seizure! As an epileptic myself, I can only give this advice as it pertains to MY seizure activity, this is totally my N=1.
Firstly, it really depends on what caused the seizure to know what this means for you long term. Additionally, with proper management of the condition which is causing the seizures, i.e. learning your triggers, you totally can race again as long as your care team has a good understanding of causation and triggering events - as well as severity and number of seizures you have. It is case by case and I personally suffered no loss of being active during my diagnosis and "medi-go-round" years of trying to find the treatment to work for me.
I have been seizure free for a decade now, and am off all meds. I knew my triggers were flashing lights, fatigue (we are talking severe no sleep fatigue) and so I was able to monitor my lifestyle to be able to do what I wanted to. Also my seizures tend to have happened at night right as I was falling asleep or
HOWEVER - again this in my n=1 and I have a very specific form of epilepsy, specific to the Temporal Lobe cutely referred to as Alice in Wonderland Syndrome, which causes psychic seizures - i.e. Deja Vu, Jamis Vu, and sensory altering episodes which is the Alice In Wonderland part -Macropsia and Micropsia - the feeling of growing very very big and the feeling of growing very very small. I seriously thought EVERYONE had this happen to them, it had happened so much of my life that I did not know that anything was "wrong".
I never lost my license or suffered grand mals however it did impact my acuity and cognition.
A seizure is the brain's way of resetting - I think of it as a hard reboot when you are in the middle of something and just pull the battery out of the computer. When the team can determine what caused this resetting, you will definitely better be able to understand the future risk and how to mitigate it.
If you have any questions at all - the American Epilepsy Foundation was a saving grace for me during my diagnosis period. Also please do not hesitate to PM me if you wish for any more resources, information, etc.
Will certainly come back to you as I learn more "about me".
All the best,
Juan
The cause and nature of the seizures were quite different but there were some similarities in the short and long-term outcomes. All of the people I know did lose their driver's licenses, but all did eventually get them back. They all also rode the medi-go-round (I'm totally stealing that by the way) that Jenniferlyn described. Seizure meds, it seems, need to be dialed in and this process seemed to involve some trial and error.
Two found the root cause of their seizures fairly quickly but for the third the process of diagnosis was much longer, more complicated, and far more frustrating. Ironically it was the third who ended up recovering more completely and with the best outcome.
None of the three were athletes, at least not in the sense that we think, but all recovered to the point where they could travel and train, and one actually found great relief and rehabilitation benefit through continued training.
Stay strong as you visit the specialists in the coming weeks. Ask questions (write them down ahead of time, it helps) and try not to get frustrated by the frustrating system.
@ Jeremy, Tks for your concern.
@ Jess, will keep you posted. Tks.
@ Clark, Tks for the input and the tips. Already writing my questions.
@Juan - has your volume dropped back significantly since Kona? Assuming it has maybe the phenomenon is similar in that your high training load actually serves as an inhibitor to what would otherwise cause seizures. Similar to this story (posted below) the effects of cycling and the mental/physical focus that accompanies it provided relief to ADD naturally without the side effects of drugs.
Interestingly...I have found the same benefit in triathlon/cycling as the young man in the article. I grew up in the era prior to the mass diagnosing of ADD and ADHD, but I displayed many of the classic symptoms. I was fortunate in that schoolwork came easy to me so it never affected my grades but certainly affected my behavior. I think there is a lot of merit to this.
http://www.bicycling.com/culture/pe...r-his-adhdJuan - I don't follow the Medical Forum, probably because I'm afraid I'll assume that being an MD, I might know something when I'm actually totally ignorant. And I have answered your query of me already, but for the sake of others who might be reading this thread, I'll paste here part of what I told you earlier:
"...Five years ago, when I found myself kneeling on the pavement, staring at my teeth and a pool of blood, unable to move my arms or talk properly, my VERY FIRST thought was about how long (meaning: how many minutes) it would take me to get back on my bike and continue that day’s training. That attitude never left; when I woke up 24 hours later with a broken neck, a tube in my throat, unable to talk or eat or even go to the bathroom, I filtered everything the doctors were telling me through, “How will this work as I try to start training again, to get ready for my IM in 9 months?”
http://view.email.ironman.com/?j=fe931674746d017877&m=fe9d13707564007b74&ls=fe3617727661047d701172&l=ff3915707561&s=fe5d11797364077a7114&jb=ffce15&ju=fe56177273620c7b7011&smtrctid=59603740&r=0
I am expecting to be riding together at the TOC this spring.
Let me know if I can help in any way.
So sorry to hear you are dealing with this! Carol and I are sending positive and healing thoughts your way. Get better soon brother!
Juan...you have my best wishes for dealing with this, finding the cause and developing a good treatment plan. I'm think of you.
I was going to mention the email from the WTC about Dengue fever, but I see others have already done so.
@ Jeremy, my doctor insists my intense training onlytells him is that it is not a heart driven situation (which could be the case). I did take off a couple days after Kona and took it "easy" since with transition training so I did not stop cold turkey,
@ Tim, tsk for your message. Lots of exams being made .... no conclusions ... going back to indoor training tomorrow!!!! I did receive the WTC email and forward it to my doctor "just in case", tsk for the reminder.
@ Al, following all your advice .... as always!!! Keep it coming!!!
@ Rache, tks for the positive energy.
@ Robert .... you said it all "expecting to be riding together at the TOC this spring"
@ Carol & Turby,tsk for the positive and healing thoughts coming this way!!
@ Patrick, will not stop training so yes I will need your help to help me adapt .... tsk
@ Bruce, tsk for your message
@ Yasko .... your message tells me there is light at the end of the tunnel, not only for me but for my wife who will (for now) watch each and every movement I do!!! Now I know she will recover!!!!! Thank God!!! (I don't blame her).
THANKS E.N. i love our nation!!!!!
Juan, So sorry to hear that this is happening to you. I am sending healing vibes your way...take care of yourself first, all else will follow..
Juan, the true mark of an athlete! Thoughts and prayers to you and you're family as you wade the murky waters here.
You're an Ironman! I have faith you'll get through this, other than that I don't have any other advice as I don't know anyone who's gone through it.
Best of luck, I'll be following and sending good mojo your way
@Al: thanx for reminding me that i need to fix my body before anything else, funny how the obvious can get lost when training is part of who we are.
Juan, I hope you get better soon. I had a bike wreck many years ago and ended up doing a face plant on the bridge. I didn't really think anything was wrong with me until I bent over to pick up my bike wheel to reattach it to my bike and ride on. However, when I did bend over a bunch of blood started pouring out of my forehead. I clamped my hand on it and thought to myself, Man, this is serious! I did put the bike against the bridge railing though before I tried to get help. (I was riding alone in a Canadian provincial park.) It's weird that as athletes we think about our equipment and our training before we think about our bodies when it should be the other way around. Hang in there an keep us posted.
PS, I ended up in a Victoria hospital with a collapsed nostril and a loose flap of skin in the middle of my forehead that had to be reattached by 50+ stitches. Thank god for plastic surgeons.
@ Robert, tsk for your note. I'm feeling excellent but still not sure what the implications are as far as competition is concerned. Doing a lot of research, talking to athletes with similar experiences (including a pro triathlete). In the mean time I have began OS training indoor .... and MOST IMPORTANT, have began working on my understandably traumatized wife's head for her to allow me to attend ToC !!!!
I will certainly write and publish something on my 2015 functional training as you suggest as soon as I have a chance. In a nutshell: no rocket science, just consistency ... 1 hour 2 times a week.
Expect to be at full speed within a month. ToC here I come!!!!
THANK YOU ALL for your positive energy!!!