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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Off Topic >> Off Topic: Exercise Tips & Support >> Figuring out exercise-related reactions http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298727049 Message started by ruth on 02/26/11 at 01:30:49

Title: Figuring out exercise-related reactions
Post by ruth on 02/26/11 at 01:30:49

Can anyone help me out with knowing the difference between reactions to exercise that are related to mast cell activity and degranulation versus 'normal' physiological responses? My son is not yet diagnosed with a MCAD, but it seems very plausible, and he is having episodes of near fainting when he exercises in warm conditions. The most recent one was after running a 1500m, followed by a 200m sprint, then doing long jump trials. He was close to fainting at the end of the session, after finishing the field event, rather than while he was actually running. If we try monitoring his BP and HR what would we see that might indicate concern about anaphylaxis rather than regular heat/exercise/dehydration related changes?

Ruth

Title: Re: Figuring out exercise-related reactions
Post by Joan on 02/26/11 at 16:43:46

I would look at others his age who are also exercising and see how they are reacting to know if your son is reacting "normally." Hydration is extremely important, especially if he could have mast cell problems. You could keep track of his bp and hr, but perhaps an easier way might be to pre-treat him with H1 and H2 histamine blockers, gastrocrom, and Singulair and see if that helps (if he can tolerate those meds). It might give you no new information, or it may stop the near fainting episodes. Definitely discuss this with his doctor, especially any new meds and dosages, and only let him try a new medicine for the first time when he's not going to be exercising.

Heat is such a huge trigger for mast cell disorder patients that I suspect it's the primary problem. Also, definitely make sure you have emergency meds and epipens at his sports events.

Title: Re: Figuring out exercise-related reactions
Post by ruth on 02/27/11 at 11:13:56

Thanks Joan for the suggestions. As far as I know he's the only one nearly fainting, but then I guess they don't realise how he is feeling, maybe others are struggling too. I will talk to his PE teacher about it.

As for medications, as he isn't yet diagnosed he is only on zyrtec and not routinely on a full regime, so playing around with premedicating isn't really an option yet. I am also interested to try to figure out what is going on and what it tells us to add to the diagnosis discussion.

Hydration is the first thing we have been addressing, and I'm not sure how we decide if this is purely about overheating and dehydration (we live in a tropical climate so everyone is very conscious of this). He is certainly very aware of it himself and I think he does pretty well now at keeping up the water and often electrolyte drinks.

Title: Re: Figuring out exercise-related reactions
Post by Joan on 02/27/11 at 17:52:21

The safest possibility might be to have him do an exercise test in a hospital setting where they would check his bp and hr and could quickly tend to any possible emergency. They could also do a tryptase test at a time when he isn't feeling well.

I hope you can find out what is causing his problems and that it is something easily remedied. Although he isn't fully diagnosed, his doctor might be willing to prescribe him some H2 antihistamines and possibly the other meds just to see if they'll help. In general, they are relatively benign, unless of course, if he's specifically allergic to one of them. He sounds very sensible, and that is great!

Title: Re: Figuring out exercise-related reactions
Post by Sandi on 03/07/11 at 17:05:11

Ruth, have you had his potassium levels checked? I have to up my potassium in warm weather ( I live in tucson) When it begins to get over 80, I just lose potassium like crazy, I become very weak and faint, shaky, potassium/sodium levels are quite important and maybe the heat is triggering this. I've not gotten to the bottom of why this happens to me, my Grandmother was on RX potassium. But the problem becomes more difficult as soon as the heat is on. I figure an adrenal issue. But possibly he's low on potassium.

Mast issue Symptoms I can describe are ringing in the ears/dizziness/nausea/vomiting/diarrhea. Itching, now I used to run track, and I can say that ringing in the ears and dizziness, even vomiting can come with a major run for a lot of track athletes. If heat is triggering your son, an in hospital setting test will not help. As they are normally around 70 degrees inside. Even non mast cell patients can have heat intolerance issues.
Did your son just start this running regimen recently? Or is he "already in shape for the running" and this has come on with the heat?
Not being in shape for running can bring on a lot of misery! I've seen it ,as a parent of 20 &22 year olds I've seen my share of sports event passing out/barfing etc :)
Ideas probably not a lot of answers, your son does need to give his instructor an idea of whats happening so he/she can be aware and help get to the bottom of this. It could totally be non mast related and a PE teacher knows other things to watch for. Also another thought was what part of the day did this occur, had he eaten soon before or not eaten in quite awhile to where he had low blood sugar.
I was just re reading your post, I'm guessing since you said he's in trials he's an in shape athlete! But I will keep my ramblings here, He needs to confide in his coach to help pinpoint whats bringing this on!

Title: Re: Figuring out exercise-related reactions
Post by ruth on 03/07/11 at 19:15:11

Thanks Sandi for some more ideas. I'm not sure he has had potassium checked, certainly not recently anyway. I had a long talk to his PE teachers last week, to at least make them aware that he is having problems, in case anything happens. It's hard to know what to say to them, because there is nothing concrete, but they at least needed to be alerted to it. I also wanted them to be ready to be observant of what goes on if he does have any sort of episode.

He is not an in-shape fit runner, this is compulsory PE sessions and atheltics carnival that everyone is expected to participate in. As for what's normal, they said in years of teaching in this climate they've only ever had 1 student faint, so he's not so typical. Last year he was having some electrolyte repalcement drinks, on the Dr and dietician's suggestion. Not sure if it made much difference, but he hasn't been having them lately so maybe it did help. What made me sceptical about that was that he did a school trip late last year camping and kayaking for 5 days. It was physically gruelling, and he drank more water than usual but still not up to the recommended amount, and yet he didn't have migraines at all. He was taking antihistamines, double dose that week as his urticharia was flaring and he was covered in mosquito bites. All in all a very stressful exhausting trip, with no electrolyte replacement drinks (even though I sent him with sachets to make up his own), and all the other stresses, yet no migraines. Made me think the dehydration wasn't the main factor in his migraines we had thought it was.

I took him for blood tests last week, primarily to check for anaemia as he has been low/borderline before. He is within range. Blood sugar may have been low when he had the latest near-fainting, as he has never been good at eating in the mornings, and this session was before lunch. However the teacher didn't think he had pushed himself enough to push his blood sugar that low. Who knows. We just have to keep watching and looking for signs that rule in or out whatever. The inconsistencies in his reactions is part of why I think a mast cell problem might explain it, the combinations of triggers, plus the success with antihistamines. But I think we still have a long way to go before it is clear.

Title: Re: Figuring out exercise-related reactions
Post by Joan on 03/08/11 at 09:12:16

Ruth,

Does he have environmental allergies (pollens, mold, etc.)? If so, the reacting could be due to something inhaled. That would account for his being okay on the trip, but not okay in P.E. When the weather is cooler, there are generally fewer allergens in the air, unless it's rainy and the mold count soars. Just a thought....

Title: Re: Figuring out exercise-related reactions
Post by Sandi on 03/08/11 at 11:42:20

good idea Joan, also the grasses running on/ fertilizers etc. or surrounding the track. Ruth I just realized you were the Ruth with the teenaged son we've all talked to before, and yes you are correct to continue to suspect mast cell issues, either with this incident or without. He has a history, I forget it all, but I remember it's long also! :) Sorry I forgot! There are so many of us, then in switching forums a lot of us including me haven't put faces to our photos yet so it's harder for me to remember who I'm talking to!!! Years before when masto was not on our radar but I had known environmental/chemical/ and major food allergies. I'd get frustrated when I'd try to get into shape and start my workouts. I'd tell my DH, I swear I'm allergic to exercise! Hopefully not your sons case! The electrolytes don't hurt especially in the heat, he may be whooshing them out also if he'd had something like that it would have helped his blood sugar too! How's the pollen levels where you are right now? More thoughts!

Title: Re: Figuring out exercise-related reactions
Post by ruth on 03/08/11 at 12:21:35

Hi Joan and Sandi, yes, I've been lurking here for a while, teenage boy with long but not dramatic enough history to get enough attention form doctors. I'm trying to be patient with the slow and steady, approach, chipping away at it. But I would just love a more definitive answer about him. I should get on and post a pic Sandi, it does make it easier to keep track of who's who.

He has had IgE etsting but didn't test positive to the airborne allergens like pollens and molds. So I hadn't worried about them, but now I look at this as possible triggers rather than allergens I am seeing it differently and realising these things could be triggers, and working on the dust mite/environmantel chemical exposures. We live in a tropical climate with very low pollens, but warm and humid, and other things in the air which might be part of it, like pollution form traffic and pesticides (his kayaking trip was in Australia, known for very high airborne allergens of the pollen variety, but probably less of the chemical pollutants than here).

I am off to the athletics carnival in a minute, so we will see how he goes in the heat today, but he doesn't have a lot of events so the exercise part of it will be less than other days. The weather will get hotter, and he is starting a unit of football which will be outdorrs and involve running, so we will see how he copes with that and look for more understanding of his reactions to heat and exercise. So we just keep at it, until I have something new to put in front of my doctor that justifies trying a new specialist, just biding my time and keeping up the diary. Thanks for your comments, it is so helpful to toss ideas around and have input from people here, even just the feedback that I am not completely barking up the wrong tree looking for a MCAD.

Title: Re: Figuring out exercise-related reactions
Post by Sandi on 03/13/11 at 17:05:16

Ruth, the other thing I thought of in the middle of the night was Exercise induced anaphalaxsis( I mutilated the spelling of that so bad spell check doesn't recognize it! Anyway, say your son can have chicken or peanut with no problem. However when put under physical exercise and has something particular it will induce anaphala .... gotta look it up
anaphylaxis .... ok thats how pub health spells it dang it! So under decent physical exertion some experience anaph after eating! So one must eat a certain amount of hours before exercising.

Title: Re: Figuring out exercise-related reactions
Post by ruth on 03/13/11 at 18:29:16

Thanks Sandi, I like the way you spelt it, makes perfect sense that way! Don't want to be having you thinking about it in the middle of the night though, I lose enough sleep over him!

I have been thinking about that, no consistent pattern though. Definite correation with heat and exercise, but not food, except maybe low blood sugar from not eating enough (he has always had an aversion to breakfast, never feels well in the mornings). Maybe also relates to postural hypotension? I did have blood tests again recently to check for anaemia, came back within range although at the low end. Just trying to rule all the most likely expalantaions, and I have asked his PE teachers to check things like pulse if he has an episode in class. Just have to keep thinking and watching and looking for clues. He has hada spot appear onhis arm over the weekend different to his other ones, so I need to go back and look at info about rashes, UP etc and see if it tells me anything more. Thanks for your help Sandi.

Ruth

Title: Re: Figuring out exercise-related reactions
Post by larken on 06/07/12 at 22:44:45

I have MCAS. I exercise 4 to 5 times per week and ride my bike 4 km to and from work each day, so I am fairly active. Yet, exercise is clearly one of my triggers because if I overdo it, I will get all kinds of symptoms. including feeling faint and dizzy. The only time I have ever gone into anaphylaxis was after sprinting for planes and trains. Just like your son, I did not feel the effects while I was running, but only after I had stopped running and had been sitting for a few minutes.

Deb gave me advice that I should be sure to warm up and cool down for a little while to avoid the worst symptoms and I have seen an improvement now that I am doing that. I also take a Gastrocrom 30 mins to 1 hr before exercising. I never sprint all out anymore and only push myself after a good 20 mins of exercising.

Perhaps your son can sit out of the more intense activities or do some kind of warm-up beforehand.

Title: Re: Figuring out exercise-related reactions
Post by ruth on 06/09/12 at 21:16:38

Thanks for your comments Larken. This is an old thread and we now live in Europe with a very different climate, although the issues haven't resolved, just a little different. Cameron also often experiences symptoms after he stops rather than while he is exercising, but he does better when he can pace himself. His issues are often in PE classes where he wants to keep up with the class, or it is required to go at the pace the PE teacher sets, however his teacher has been quite understanding and allows Cam to pace himself. So often I am told its just a matter of poor condition and if he just gets fitter it will resolve, but that's easier said than done.

Title: Re: Figuring out exercise-related reactions
Post by larken on 06/10/12 at 04:57:35

Hopefully pacing will help. I disagree that it's just a matter of being fit, though that is some of it. I am quite fit and I still get all kinds of symptoms if I push it, especially in warmer weather. For me, it was a catch-22 until I figured out that I needed to warm up a lot: exercise would trigger me so I would not want to exercise, so I would not exercise and became less conditioned.

Following advice on this forum, I realized that if I did low-intensity exercise for longer (which was easier and did not cause my symptoms to flare) and then began higher intensity 20 or so minutes into it, it was easier to get out there--even if, in the end, I did 20 mins of walking and then 5 mins of jogging. Now I'm up to much longer jogging times, but I still flare if I push it too hard.

I don't know if you had luck in finding a diagnosis for your son. If you need any medical advice, I am in Europe, as well, and it took me several months to find a good mast cell specialist to diagnose me. I am very happy with my current doctor, so message me if you'd like more information. I would be happy to share it.

Title: Re: Figuring out exercise-related reactions
Post by ruth on 06/11/12 at 20:57:49

Thanks Larken. I agree this is not just about fitness, but getting past that attitude is really hard, especially without a confirmed diagnosis. I is really hard to get Cameron to persist, he has tried so many different sports and ways of exercising but almost always has either a migraine or some other symptom, he really hates it and it is so hard to motivate him. We are not too far from you, from what I recall, in the north of Belgium. Don't think we would come over the border unless there is a top specialist, but if your doctor has any connections here that they would recommend for MCAS I would be interested to know. I am hoping we might eventually get to Dr Escribano in Spain, but a local recommendation would be good too.

Title: Re: Figuring out exercise-related reactions
Post by Joan on 06/12/12 at 10:10:56

I wonder if Cameron's tried swimming. It removes the possibility of over-heating, can be done by himself (without feeling the stress of competition with others), and he can set incremental goals for himself. Water games are also good, because the resistance of the water is exercise in itself. Of course, if he reacts to too much cold, that could be an issue unless you can find a warm pool. Here, there are warm saltwater pools that don't use chemicals. Don't know if there are any in your area.

Title: Re: Figuring out exercise-related reactions
Post by ruth on 06/12/12 at 19:15:58

Hi Joan, he has been a swimmer. Growing up in Australia and Singapore that is one sport that has been part of his life, and my other kids swam a lot. His skin reacts, I assume to the chlorine, and we haven't tried a salt-chlorinated pool. He gets flushed even in an unheated pool, but that might be from the chemicals rather than overheating. Golf and cycling are our best options at the moment, but it's a constant battle to get him to do anything, and he still has some pain from his fractured tibia. We are getting a dog over summer (a hypoallergenic one) partly in the hope that it will give him a reason to get out and walk regularly.

Title: Re: Figuring out exercise-related reactions
Post by Joan on 06/13/12 at 11:52:48

Hi Ruth,

I had an asthmatic/highly allergic son, and he did fine with a Soft-Coated Wheaten Terries. We were very lucky about that, but now my daughter has now become allergic to dogs!

You already may have done this, but is it possible to have Cameron spend a lot of time over several weeks with the breed of dog you're thinking of getting, especially the pup's parents? As you probably know, anyone can be allergic to any dog, simply because of the proteins in its saliva, but it can take a while to react.

Just curious, what breed are you planning to get?

I hope he'll soon feel better and will want to exercise.

Title: Re: Figuring out exercise-related reactions
Post by ruth on 06/13/12 at 18:45:15

That's the breed we are getting! Thry are quite lovely dogs. We have visited the breeder but unfortunately she is a smoker so we can't judge his tolerance by visiting with her dogs. Even being in a room with an airfilter where the pups are, and no smoking in that room, we could smell tobacco on our hands after our visit, probably from the mother dogs fur. I have put this decision off for a long time, my kids have wanted a dog forever. I have decided to take the risk, for the sake of the other benefits, and if a problem becomes obvious then we will have to deal with it. He has spent time with other dogs, and we have cats, and it hasn't seemed to be a problem, but I know it can vary. I have had friends with known cat allergies who have visited us and not reacted at all to our cat, he must be somehow less allergenic than others.