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Darren

Exercise / Running while in Cycle

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So, I would imagine there has to be some other runners on this forum. I love to run (distance), and train year-round through the Canadian seasons. I'm a recreational level runner, but do like to challenge myself in races. I do also follow a training plan that has workout runs that are easy, and other workout runs that are much more demanding. In addition to running, I play Ultimate Frisbee at a pretty high level. Outside of cluster cycles, I typically run 3-4 times a week (about 40-50 km / week) + I play Ultimate Frisbee on average once a week + tournaments some weekends. That's all when I'm in remission. Once my cycle starts, I really struggle to maintain all of that. I hate sitting around, knowing that all of my training is just going down the drain. I understand that strenuous activity can be a trigger for some. I have also read that relaxing after something strenuous can trigger some. I have personally found that playing Ultimate isn't a trigger for me. Not sure if it's just the nature of the sport with the stop and go in short bursts. Perhaps because I don't have to sustain a high heart rate for long lengths of time. I have not really determined if running by itself is a trigger for me. I have gone on many runs where I've been fine, with no attack after. But, I do know for sure that on 2 runs; as soon as I finished the run both times, I got hit with an attack within about 5 minutes. One of those two runs was a race, where I pushed very hard. The other was a somewhat tough training run. My wife is always very scared for me to go for runs, both because I could get a hit while out (though, that has never happened), but more so because she fears it will result in a hit shortly after. As noted, yes, it did happen twice, but, there have been a lot more times that I've run and not gotten a hit after. So, I'm really not sure if it is / isn't a trigger for me (ie: do triggers ALWAYS = a hit, or if it happens sometimes, does it still count?). I also realize there are a lot of other variables that could be factors (temperature, barometric pressure, what I ate recently etc. during any one of those given runs).

While I know that triggers vary from one sufferer to another; I'm curious if there are other runners around the forum, and what their experience might be. Do you just stop your training when in cycle? I am really having a hard time getting myself to do that. While I've suffered from Episodic CH for 17 years now; I've only really gotten into running during the past 3 years, and this is only my second cycle while being a runner. So, I'm still trying to figure out that part of it. I certainly would not be able to run during an attack (i have read some people find that can help abort an attack....there's no way I could do it, personally). But, between attacks, I would really like to maintain my fitness and my training for upcoming races that I have planned for after the cycle.

Curious if runs trigger attacks for you. Curious if maybe there's a target Heart Rate that would be best to try to stay within. Curious if anybody has any other tips. I also know that some say relaxation after a day at work can trigger for them, so, perhaps that's what happened the two times that I got attacks after strenuous runs? Also, for something to be a trigger, I would imagine the attack usually happens shortly after the trigger (what's the time window?). ie: an attack 12 hours later, surely couldn't be considered a result of that "trigger", right?

Thanks in advance! I really appreciate the wealth of knowledge in this group :)

Edited by Darren

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I have seen people post that running, push ups, exercise helps them abort an attack. But in the year or so I’ve been here I do not recall some one saying it triggers them...

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25 minutes ago, Freud said:

I have seen people post that running, push ups, exercise helps them abort an attack. But in the year or so I’ve been here I do not recall some one saying it triggers them...

Sorry, to clarify, I don't mean that running in itself is the actual trigger. But I thought I have read posts where people find that strenuous physical activity and overheating are triggers. Which would often be the result of running. In which case, I was trying to see if there are runners on the forum that still train during a cycle. And if they do, what their experience is like; and if they have any tips / tricks that they keep in mind with their runs. :)

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I've been experimenting with this for the past week. Body weight exercises, running, walking, etc. For me, CH does not discriminate against physical activity. But on the flip side, physical activity helps prevent complete CH attack manifestation.

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I'm not a runner. I walk alot thou and I wouldn't stop training. Just for the fact that exercise helps with depression. When I'm in cycle I usually walk more and never get hit on my walks usually after thou I can count on one.

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46 minutes ago, Rod H said:

I'm not a runner. I walk alot thou and I wouldn't stop training. Just for the fact that exercise helps with depression. When I'm in cycle I usually walk more and never get hit on my walks usually after thou I can count on one.

Yup, definitely agree with you about that. When in cycle, it's good to keep any sense of normalcy wherever possible (and there don't tend to be a lot of opportunities to do so :p). So, I definitely want to keep running, as long as it's not something that's going to cause more attacks. I also just find that in general; running helps me clear my head. When I'm out there, I don't think about anything else. I just enjoy my run. So, for sure, I want to keep doing it. Guessing trial and error is the best approach here. As noted, I only got into running about 3 years ago, so, have limited experience doing so when in cycle (just came off a 21 month remission). I've tried a couple of easy runs so far this cycle. And, have been fine so far (got a hit 12 hours after the first run...but I don't think that would be any relation, so long after). Will ramp them up a bit if things continue to go well. I don't expect to be able to train at the normal level. But if I can at least still get our for runs for my own sanity, that's probably enough.

I've honestly never really had any luck figuring out my own personal triggers. In any way, shape or form. I feel like the hits just come when they want to. And when they do...you just try to deal with them as best as possible. I've tried to figure it out, but IMO, it just causes even more undue stress, in an already stressful time. That said; I do avoid the things that are considered to be the biggest triggers (alcohol, chocolate, foods high in nitrates, strong smells, etc.). Just trying to figure out if distance running falls on that list somewhere.

Edited by Darren

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Darren, Hi!

I think that what many of us want most is what we consider 'normal' out of life. With that goal in mind, we test the limits. NO one wants to live in a cage and CH can make us feel 'caged'. If you are running successfully, continue. Triggers, as you noted, usually cause a hit quickly. Sip of beer perhaps. I have gotten that brain crusher before the beer was to the shoulder of the bottle - like two sips. So, yea, for me, triggers are pretty darn immediate. Hours later? I would vote for pollen, weather change, passed by an asphalt truck kind of thing. Triggers are very quick for me. 

As long as you are benefiting I would continue with the work out. It is so good for you mentally, right? Frame of mind is pretty darn up there in 'Important Stuff'.

ATB!   

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Darren - I have been in cycle since July 4. I have triggered twice minutes after some longer more strenuous runs.

On the flip side, every day for the past week I start to get a hit sometime between the hours of 4:00 pm to 7:00 pm. I have learned that running on the treadmill for 12-14 minutes is a great abortive technique - has not failed. To add icing, those are also the nights I sleep all the way through without a hit. 

If my daily hit does not come during the late afternoon / early evening time frame, the odds are good I'll be up at 1:00 am on the treadmill - it still works, but then there's no sleep for awhile.

So exercise can be both a trigger AND and abortive. I have found that reducing the intensity of my normal workout does NOT trigger. You might try just easing back a little bit.

You are right though - seems to be no consistency with this thing!

 

 

 

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I've also never heard of one being triggered by exercise but I can definitely attest to exercise taking them away. I recently started having CH's again after not having them since 2015. I haven't had them all my life, but I started getting them in 2015 and I knew they were crazy. I found this D3 regimen way back then and followed it until they went away. But jumping jacks ALWAYS help take mine away. I do about 6-7 sets of 20 or so basically resting in between sets until I can gradually feel it going away. Now I have my own place so its a lot easier to get up and just do some jumping jacks without disturbing anyone else or looking crazy. Also running helps me also. Running in place doesn't really help but if I just run around in a circle, (if I can't run outside at the time) works also. But I prefer the jumping jacks.

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I've been testing things out and running pretty regularly this cycle (3-4 times/week). For the most part, no issues. So, I don't think it's a direct trigger for me. I did for the first time though, have an attack on Sunday; 10km into what ended up being a 13.5km run. I've never had a hit while running. Have had a few right after running. So, this was a first. I had zomig with me, but decided not to take it, to see how continuing to run would work out (another first for me). I did find that it never really ramped up to a full intensity hit. Only to around a kip 2. And went away after about 20 minutes (15 of which were running + 5 as a passenger in the car heading home). My attacks usually last an hour. So, this was really interesting for me. I had read the posts about aborting with physical activity.  But I really never could have imagined being able to do it. Will definitely be doing more experimenting with this one. 

Side note - not sure if it's the verapamil (now on 120mg x 3/day); but I do find my runs feel harder than they do when out of cycle. And I've been running at a much easier pace too. 

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Former tri-athlete (& at a very young age over-the-top competitive at cross country & dance etc). As a result I can't buy medical clearence for anything but super lightweight physical therapy complete with constant supervision & labs. I over-trained at an early age to the point my bones are turning to dust. That was discovered after injuries (e.g. broken back) when I wrecked my bike while tri-training. I still swim, on a bad day I can swim a sprint tri-distance & I paddle & pull my kakak. My docs would just worry & want labs, so I don't tell them. When I get my hands on a horse (I'm not to ride at a walk) I'll ride at more than a walk. I won't sail over 5' tall 8' wide obstacles that don't fall or jump 6' down into water obstacles on a 2 mile cross country course at break neck speeds (broke my neck at 8yo). That could break me & I don't like to be broken.

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In the recent past I successfully trained for an Ironman.  Understand completely the post training hit, it robs you of the joy of completing an event.  I am strongest in bike and running isnt my thing but the outcomes are likely similar.  I found taking salt and magnesium at intervals helped prevent post training hits.  Generally most of my hits came at night so sleep disturbances had the greatest impact on training.  Busting helped too ( I think).  I firmly believe it is best to pursue everything you can and fuck the beast.  If you alter your life for the beast the beast wins.  Never let a bully win.

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