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        Cluster Headache Help and Support >> Cluster Headache Specific >> exercise/sports....how do you do it?
        
(Message started by: swimchica623 on Nov 15th, 2006, 12:39pm)
Title: exercise/sports....how do you do it?
Post by swimchica623 on Nov 15th, 2006, 12:39pm
I am having some serious problems and no one that I know personally can help me because they just don't understand what I am going through.  I am a competitive swimmer..my college is divison three but a very competitive one and we are nationally ranked very high.  We have been the confrence champions the last few years and I have actually won my best event and done very well in others at confrences every year, and just missed NCAA nationals by .02 seconds last year.  I've worked hard to get this far..not just regular athletic working hard but battling severe asthma.  I love swimming and could never imagine quitting.
Now I am at my last year and have developed the hybrid cluster headaches and migraines over the last summer and I feel...hopeless. I have missed more swimming than ever and the season is getting shorter and shorter, I feel like I am never giong to catch up.  I feel like I should just quit now, like I am going to just continue to set up false hopes that everything is going to be okay and that things will get better.  I am on Topamax and it is helping, although it seems to be more with the migraine symptoms if that makes any sense.  I haven't been on it for the full 2 months that it takes to see the full effects, so sometimes I feel like I shoud just continue to be patient with myself until then at least.  When I think about quitting, it feels like such a relief.  But then wehn I really REALLY think about it, I just feel so depressed and like I want to scream and cry and like everything I have worked for and wanted for my entire life has been ripped away from me, suddenly and unfairly.
Does anyone have any thoughts on this?  Similar experiences?  Comforting words?   :'(
Title: Re: exercise/sports....how do you do it?
Post by seasonalboomer on Nov 15th, 2006, 1:03pm
in 3 weeks I will be running my 10th marathon. while in no way do i consider myself a competitive runner, i am a runner nonetheless. and when I have trained through a cycle (exercise is a trigger when I'm in cycle) and i'm coming around a bend and I can see the finish line showing 26.2 miles, i fill up with emotion. my accomplishment, for me, is amplified by what i go through to achieve the end goal.  no one else knows it at the finish line, but i do. i kicked CH in the ass and made it through the training and am getting not only the medal from running the race but the sense of having power over the beast.

it gets me through the early morning training runs, the long saturday runs, the sometimes O2 session following a run, all of it.

so, fight on. put your head down and swim harder. don't let the beast win!!!!

Scott
Title: Re: exercise/sports....how do you do it?
Post by dave..... on Nov 15th, 2006, 1:41pm
i play guitar in a band.... we play a lot of bar gigs.... we practice at my house so when we play out i am the one that loads up all the equipment. trucks it to the gig....at the end of the night i am the one at my house at 3 am unloading everything....... dont let it win..... you must try to continue life as normal as you can.... sometimes its hard... but you do what you must....... get mad at it. just dont give up......you have worked your entire life..... dont let it steal what you have worked so long and hard to achieve...........
Title: Re: exercise/sports....how do you do it?
Post by Bob_Johnson on Nov 15th, 2006, 2:33pm
Suggest you print this out and use it to discuss options with your doc. Verapamil as a preventive might be a useful addition unless the doc thinks it might compromise your athletic performance. Still, you have options of more than Top.

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
http://www.brightok.net/~mnjday/chtherapy.pdf  
Title: Re: exercise/sports....how do you do it?
Post by swimchica623 on Nov 15th, 2006, 4:22pm

on 11/15/06 at 13:03:10, seasonalboomer wrote:
in 3 weeks I will be running my 10th marathon. while in no way do i consider myself a competitive runner, i am a runner nonetheless. and when I have trained through a cycle (exercise is a trigger when I'm in cycle) and i'm coming around a bend and I can see the finish line showing 26.2 miles, i fill up with emotion. my accomplishment, for me, is amplified by what i go through to achieve the end goal.  no one else knows it at the finish line, but i do. i kicked CH in the ass and made it through the training and am getting not only the medal from running the race but the sense of having power over the beast.

it gets me through the early morning training runs, the long saturday runs, the sometimes O2 session following a run, all of it.

so, fight on. put your head down and swim harder. don't let the beast win!!!!

Scott



Thanks so much for your reply...thats what I needed to hear.  I'm noticing the more of these attacks I get, the easier it is getting to go along with my life.  After getting one at 5am (one of the normal times for me..the other is around 4-5 in the afternoon..gettin anxious now but trying so hard not to think about it!!) I managed to get myself out of bed and go to 9am German class!  Actually I turned my alarm clock off and my mom called 15 minutes later, my back up plan, and I talked to her and started making jokes and laughing at myself and sorta rolled out of the bed until I was lying on the floor...umm kinda hard to explain but it worked.  Anyway what I'm getting at is that was my FIRST success at getting back at a normal life since this started, the first time that I managed to beat it, even a tiny bit, and not even beating IT just beating the fact of not getting enough sleep due to it (the "hit" as I've learned from here).  But still...it was an accomplishemnt...and enough that has maybe given me more courage to do more things again.  
I think I am going to print/write out your response and tape it to my locker at the pool so I can see it before every practice...because as soon as this cycle is over I'm giong back!!!!  ;;D  :D
Title: Re: exercise/sports....how do you do it?
Post by swimchica623 on Nov 15th, 2006, 4:28pm

on 11/15/06 at 14:33:48, Bob_Johnson wrote:
Suggest you print this out and use it to discuss options with your doc. Verapamil as a preventive might be a useful addition unless the doc thinks it might compromise your athletic performance. Still, you have options of more than Top.

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
http://www.brightok.net/~mnjday/chtherapy.pdf  


Thanks....I understand what you mean about transition medicines and using things just till the Topamax gets going...I think I am just resistant because I am on so many medicines already.  You wouldn't believe the list...or my closet hehe.  I'm also soooo close to the time when the Topamax should be kicking in and according to the list at the average dose.  I think another one of these drugs might affect my perfomrance...Topamax doesn't really, but Depakote suuuuuuure did.  I couldn't make it through the easiest practices, it was horrrrible.  The first day I was off it I felt practically back to myself, too.  
I know in my heart there is no way I can quit..and I don't want anymore drugs.  So I think what I really need now is just plenty of support along the way.  :)
Title: Re: exercise/sports....how do you do it?
Post by Ozark_E on Nov 15th, 2006, 4:41pm
Swimchica,
 I guess I am in a similar situation, as I had a big ultimate tournement coming up (club regionals).  I had been training for months, and was real excited to play, it was my first time playing on a masters team, and first time in a competitive tournement since college, over 6 years earlier.  But the week before the tournement, my first CH cycle in 3.5 years came along.  Game over.
 Now here is where my reply differs from others.  I am not of the "Fight it", "get mad", "don't let the beast win" school.  CH came along, and I had to let ultimate go.  My cycle will pass, and I'll play in the tournement next year.  I guess it comes back to my somewhat Buddhist background.  The more you GRASP at the things you desire but can't have (swimming, ultimate, PFD) the more psychological suffering you create for yourself.  My advise is to let it go for now.  I hope your cycle clears soon and you will be competative in no time.  That is my hope for all of us.  
Title: Re: exercise/sports....how do you do it?
Post by swimchica623 on Nov 15th, 2006, 4:58pm
I think what is making the problem so hard is that I can't just let it go and come back to it...this is my last few months of college swimming...EVER.  This is when you get the senior recognition, senior gifts, scrapbook, feeling of accomplishment of finishing what you started.  I'm close to the END of something, not something on going.  As of Feb 2007, its something I will NEVER be able to return to.  
Title: Re: exercise/sports....how do you do it?
Post by stpp77 on Nov 15th, 2006, 5:48pm
swimchica--keep going and fight through it. I agree with you!! You don't want to look back and have any regrets, because of these darn beasts----keep pushing through it and doing the best you can...Believe me, I have let these things amongst several other medical issues bring me down over the last few months and I wish some days I would have pushed harder to do the things I wanted. Pain free wishes to you and try to enjoy the rest of your college year!!

sorry edited for spelling
Title: Re: exercise/sports....how do you do it?
Post by Ozark_E on Nov 15th, 2006, 6:11pm
The up side hopefully is you cycle will end soon.  Mine have never yet exceeded 8 weeks (my fingers are crossed here in my 8th week).  I got my first cycle around you age, I was 21.  Another up side possibly is topamax is working well for me.  I've only used imitrx twice in the past 3 weeks.  Unfortunately it is when i've exercised (hiked).  I don't know if it was the exercise or the tension on my neck from a backpack that did me in.  
 I didn't mean to try to discourage you, and I hope your cycle clears in time to compete.  I was lcky enough in college that my cycles never coencided with ultimate season.  I've always noticed that with gratitude.  I hope my advice can be heeded more genrally perhaps in the future. iIt is especially useful as a parent.But if things do not go your way with your senior year swimming activities, I promise you, you will be happier by letting it go than by dwelling, wondering, regretting, and what ifing for the rest of your life. Please believe me.  
Title: Re: exercise/sports....how do you do it?
Post by sandie99 on Nov 16th, 2006, 12:43pm
I feel you.  [smiley=hug.gif]
I'm a student and working on my MA degree. Ch sure has made it harder, but I'm still doing it. Something every day. :) I do pilates most days and I swear by it. I feel that it helps me to deal with ch and my life in general little better.

I've been through rough times with ch and I know very well how hopeless it can make you feel. But don't give up! Don't let the devil win. Take it a day and a swim at the time! :)

I hope that you're PF soon. In the mean time, let us know how you're coping, okay?

Best wishes & PF days,
Sanna
Title: Re: exercise/sports....how do you do it?
Post by BB on Nov 16th, 2006, 2:24pm

on 11/15/06 at 16:28:49, swimchica623 wrote:
I know in my heart there is no way I can quit.. :)



You have got it right there !  Keep going my friend .. we arw rooting for you ..


Annette
Title: Re: exercise/sports....how do you do it?
Post by Quisto on Nov 19th, 2006, 12:07pm
Well,
My girlfriend plays hockey (as do I).  She has a game tonight at 9 which will end at 10 or so.  Unfortunately,  she has an appointment about 11 pm or so everynight with an attack.   Any suggestions?  I can get her home to her O2 tank hopefully by 11 and she can take her Caffergot right away  .  But if the activity itself is a trigger is there anything we can do?  I am thinking a Red bull and lots of water before and during the game is worth a try,  but any other suggestions?
We are avid recreational hockey players sometimes going from my game to hers to another of mine all in one evening.  In the summer we play up to 3 or 4 nights a week.  I recently broke my ankle and the time off the ice was more depressing than dealing with the minor pain and inconvenience of crutches.  My muscles were twitching to be used.  I want her to continue playing and she is very upset that she may be unable to play,  and terrified that the game may trigger an attack.
Thanks for any info,
Kerry
Title: Re: exercise/sports....how do you do it?
Post by seasonalboomer on Nov 20th, 2006, 10:04am

on 11/19/06 at 12:07:45, Quisto wrote:
Well,
My girlfriend plays hockey (as do I).  She has a game tonight at 9 which will end at 10 or so.  Unfortunately,  she has an appointment about 11 pm or so everynight with an attack.   Any suggestions?  I can get her home to her O2 tank hopefully by 11 and she can take her Caffergot right away  .  But if the activity itself is a trigger is there anything we can do?  I am thinking a Red bull and lots of water before and during the game is worth a try,  but any other suggestions?
We are avid recreational hockey players sometimes going from my game to hers to another of mine all in one evening.  In the summer we play up to 3 or 4 nights a week.  I recently broke my ankle and the time off the ice was more depressing than dealing with the minor pain and inconvenience of crutches.  My muscles were twitching to be used.  I want her to continue playing and she is very upset that she may be unable to play,  and terrified that the game may trigger an attack.
Thanks for any info,
Kerry


I finally retired from ice hockey playing last year. Coming up on 44 this year I was beginning to feel my age while still trying to play Mens "A" level hockey. They just kept getting younger and younger, and me older and older. For some reason, hockey rinks often seemed to be a trigger for me which made playing a crap shoot when I was in cycle. I also was a refereee for about 5 years and there you often realized that getting hit wasn't only going to affect you but also others. If you thought referees could be a-holes, imagine a referee with a KIP-5 CH. I wasn't real big on discussing the subtleties of my most recent call with many players when I got hit. I also, because of the sound sensitivity, wasn't real big on blowing my whistle needlessly. Luckily I was a pretty decent referee otherwise.

Anyway. I would definitely keep the Red Bull handy. Maybe put the O2 tank in the car so it can be in the parking lot if needed, and worst case, wheel it in if she gets hit while playing. Worst case, bring some imitrex injections to the rink.

CH can't be planned for but how you fight it can be. Having a couple lines of attack at your disposal once a hit comes can mean the difference between being able to enjoy yourself and having so much anxiety about things you can't fully enjoy yourself.

Good luck!

Scott
Title: Re: exercise/sports....how do you do it?
Post by chewy on Nov 20th, 2006, 10:39am

Quote:
exercise/sports....how do you do it?


I just say no.
Title: Re: exercise/sports....how do you do it?
Post by Ozark_E on Nov 20th, 2006, 11:57am
If you'r episodic, then just put the exercise to rest til your cycle passes.  No big deal.  For me Exercise IS a trigger.  It's like having a beer.  If you just have to have your beer, then you'll just have to deal with your CH.  If youe just need to play hockey, well then you'll just have to deal with the CH....

Hockey Rink was a trigger for some reason...? Hmmm, this ties in to some of my lines of thought lately.  A few of my cycles have started right after contiouos exposure to somewhat noxious smells.  One cycle started right after I bought a new car, oh that new car smell, full of many toxic smells.  Another started right after we bought a memory foam matress topper, more bad chemicals.  No offense to you all Candiens, but don't hockey rinks kinda smell bad, are there chemicals associated with them?
Title: Re: exercise/sports....how do you do it?
Post by Quisto on Nov 20th, 2006, 9:23pm
Thanks folks,
Tory managed to play the entire game,  had to chug a redbull halfway thru when i saw the eye sagging and the ear getting red.  I actually see her one ear getting red before she feels anything coming.  She did have to RUN to change and RUN to the car to take the cafergot and suck some O2.  But she made it and was fine in like 6 minutes.  This is her very first cycle of CH,  and she sees a neurologist tomorrow.  She is getting by since this past friday with a tank of weld O2 and mask that  a friend dug up for us (well connected and resourceful friends here)  We were amazed by the effectiveness of the o2.  Now we're just looking for the script to get refilled and find ways to go more portable.  We hope for the best (PF days) and expect the worst.
Title: Re: exercise/sports....how do you do it?
Post by Quisto on Nov 20th, 2006, 9:29pm
Hockey rinks smell great to me!!  I've been on the ice since I was 3 years old.  Its not a chem smell,  more of an old building, sweaty gear and icy smell.  However,  I am not a fan of the smell after teenage boys just get finished,  whew!!!

I think I had a CH ref my last game,  New standards of play and all..........      ::)
Title: Re: exercise/sports....how do you do it?
Post by lskilly on Nov 20th, 2006, 10:07pm
I guess I am like Chewey. Now I just say no.

But,,,, A strong cup of coffee and then jump on my treadmill at about 4 miles an hour walking will almost always abort the monster. At first it may up the Kip Scale some but then it will subside.

When I lived in So Cal Coffee and a swim also did it for me. Of course the pool was handy.

It's tough to get over the anxiety once you break through that it becomes easier.
Title: Re: exercise/sports....how do you do it?
Post by Mr. Happy on Nov 21st, 2006, 2:39am

on 11/20/06 at 21:23:02, Quisto wrote:
We were amazed by the effectiveness of the o2.  Now we're just looking for the script to get refilled and find ways to go more portable.

90% of the O2 game. Great work.
Huff your lungs into PF overtime.
Title: Re: exercise/sports....how do you do it?
Post by seasonalboomer on Nov 22nd, 2006, 9:38am

on 11/20/06 at 21:23:02, Quisto wrote:
Thanks folks,
Tory managed to play the entire game,  had to chug a redbull halfway thru when i saw the eye sagging and the ear getting red.  I actually see her one ear getting red before she feels anything coming.  She did have to RUN to change and RUN to the car to take the cafergot and suck some O2.  But she made it and was fine in like 6 minutes.  This is her very first cycle of CH,  and she sees a neurologist tomorrow.  She is getting by since this past friday with a tank of weld O2 and mask that  a friend dug up for us (well connected and resourceful friends here)  We were amazed by the effectiveness of the o2.  Now we're just looking for the script to get refilled and find ways to go more portable.  We hope for the best (PF days) and expect the worst.


You go girls!!!!! Nothing more inspirational to me than stories of people facing CH down and living life to its fullest. Very admirable that y'all got the welders' tank and are making it happen -- aggressively building an arsenal of weapons (Red Bull, O2, etc....) can give such confidence to living life.

You'll love once you can get a prescription for the little tanks. (I have the visual of the welders tank in the car outside at the rink).

One bit of advice for the trip to the car during the game --- skate guards....she'll barely miss a couple of shifts then. LOL

Scott


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