Severe Allergic Reaction due to heat.... - The UK Mastocytos...

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Severe Allergic Reaction due to heat. How do others manage this?

TortoiseGuardian profile image
3 Replies

Hi all. I was hoping to hear from other people whose MCAS is triggered by heat and what they do to help?

I live in UK and when we have hot days they are generally very humid. I overheat very quickly which then leads to a drop in blood pressure, severe diarrhoea, shaking, dizziness, nausea, confusion, and heavy breathing. I know from experience that this can easily worsen into serious anaphylaxis and am dreading the warmer months as one 30°C day this week has led to 3 days of big reactions entering into a reaction cycle which I am currently trying to break before it gets bad enough for hospital.

I have an air purifyer/fan that filters pollen out of the air, a fan that also mists water, have been using cold cloths and ice packs to cool down but it is still very difficult to keep my mast cells under control. I am usually on 30 cetirizine a day but have upped to 50, also on montelukast but introducing other meds when I am this reactive is a very risky move.

I am at a loss as to what to do next. Any suggestions?

I also had a concussion that developed into post-concussion syndrome 8 yrs ago (which apparently may be linked to my MCAS) does anyone have any experience with this kind of injury affecting heat regulation and/or MCAS?

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TortoiseGuardian
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3 Replies
Jess-UKMasto profile image
Jess-UKMastoPartner

Mast cells are not keen on temperature extremes and changes in temp (hot to cold or cold to hot) so days like we’ve had can be a real challenge.

My own strategies are: to try to plan ahead so I don’t have to exert myself much on the hottest days; to dress in light, flowy, loose, light coloured clothes and wear a sun hat if I have to be out. I would also consider putting on a good mask (not only to keep out COVID but also keep out airborne chemicals that trigger me) and go to a public building that has air conditioning where you can hang out for awhile to cool down. If you are in a position to afford to air condition one room of your house that is something that some of our members do.

I was taking my son to a uni open day on Friday and I react to the heat and I had to express clearly what I could and couldn’t do given the temperature and how I react. I could sit in a cool-ish lecture hall but I couldn’t go march up and down the stairs one more time, etc.

There are things called cooling vests that We’ve had some people try. I couldn’t have something frozen against my skin for long so I’m not sure. They aren’t cheap so I’d save up for AC I think, if there is a room where it works, rather than invest in a vest.

Mastomum profile image
Mastomum

Hi , I too have reactions to heat, even a hot bath. I take antihistamines and mastcell stabiliser and try and eat a low histamine diet. Also I take thinks slowly in hot weather as a combination of heat and exercisd can send me to hospital

JayCeon profile image
JayCeon

I don't tolerate fans, air conditioners or heat or summer breezes, all makes Ache all over. In hot weather we are very careful to keep our rooms down in temperature by keeping windows shut when the outside temperature is higher, and only opening in the night and early morning when it's lower. Also putting/leaving blackout blinds down, shades etc. all day to keep the sun's heat out. I can't go out for long anyway (30'), heat doesn't help - so if I do it's as 'early' or 'late' as I can, so 10 or 7. What I do usually tolerate is snappy cold showers (20-60''), esp. at night - much better for me than constant cooling.

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