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Warm weather is OI / POTS nightmare!

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Thinktank, Jul 19, 2017.

  1. Thinktank

    Thinktank Senior Member

    Winter is coming, or so i wish.

    Today it's 30+ degrees celcius and i'm totally floored! I feel inflamed from top to bottom, can't stand up and feel completely exhausted.
    It started last night with a terrible hayfever reaction, i woke up with bloodshot eyes, clogged sinuses and non stop sneezing. Quercetin and feverfew brought me some relief but on top of that i took 5mg cetirizine this morning.... bad choice as it increases vasodilation.

    Anyone else here who wishes summer ends rather sooner than later?
    And what do you do to control heat triggered OI / POTS?

    I'm staying with my parents for a few weeks in the Netherlands but they don't have air conditioning (which is rarely needed in this depressing country anyway), at home i usually crank up the AC and lay down until i feel better.
    I'm thinking about taking cold showers. Caffeine works great too as vasoconstrictor but it always leaves me overstimulated and in the end it worsens the OI / POTS because of its diuretic effect. Perhaps some extra sodium?
    Last edited: Jul 19, 2017
    rosie26, SamanthaJ, leela and 3 others like this.
  2. Avena


    Compression stockings/socks. Lots of salts, high doses of Magnesium/Potassium, Coconut Water, sports/energy drinks with electrolytes. Epsom salt baths. Eat regularily despite nausea.
    ahimsa, ebethc, leela and 5 others like this.
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Since I became severely affected with ME then POTS, from May to September I can't function due to the heat, and that's just in the UK. Sure there are days when it's colder, but most of the time if it's over 21c room temp, I'm screwed.

    I first noticed this in UK Hospitals in the South of England, where of course there should have climate control, but there isn't due to cost savings. In the summer it used to be 28c on the ward and I struggled to breathe, that was years before I developed Asthma as well. I realize eventually it was the heat, as come September in the UK, the summer ends and once back home, colder, I could walk to the bathroom, rather than be totally bedridden. So my circulation was hugely affected by the heat, at the time I didn't realize and put it down to 'ME' weakness.

    So I sympathize with you.

    To control the heat at home each summer, I bought air-con units (400 euro or so), then gave up and had air con professionally installed around the house as the place looked like a warehouse with machines everywhere. It's extremely expensive, about a 50% profit ratio for the installers, but it keeps me out the hospital and helps me feel less terrible with ME and POTS (I got POTS after a virus, years after having ME as teenager). With POTS, the heat made it much worse as the pain was far worse. Heat for me, makes the pain worse. Although this may be explained by Dysautonomia affecting the CNS, it can also be found in Neuropathy (nerve damage) which I have. I only found that out recently, as yet again, I put all my symptoms down to ME or POTS.

    If you have chronic pain, fluctuating burning pains, and find yourself far worse in the heat and also get shooting lightning bolts in your feet (at first), episodic crawling insect sensations, and biting sensations in your arms and legs you might want to get a test done when back home, for Small Fiber Neuropathy/Peripheral Neuropathy, it's a little skin biopsy.

    Back to the heat...

    In your situation in someone else's house without air con, the only thing I can think that would help is to not walk anywhere, buy some tight support hose stockings that women wear (even if you're a guy) and sit near a big fan. Also I sticking your head under the cold tap helps for a few seconds, as of course does drinking cold water and holding a glass of water with ice in it whilst sitting near a fan.

    Avoid caffeine as it's a stimulant and in POTS can cause chest pain, and tachycardia. I learnt this once downing an entire 2L bottle of an energy drink and ended up in Hospital!

    If you're staying into August and the heat stays then I'd hire or buy a portable air con unit. As long as you have a window in your room you can throw the giant exhaust hose out the window and block the rest of the air with cushions or a duvet as a crappy looking, but moderately effectively emergency air-con solution. That's what I did for years.

    The good news is, Holland is reasonably cold and the current heat won't last long. It should go today and be absent for the next week or so, so you should get lucky and miss it, unless you're staying throughout August. If so, I'd try and raise 400 euro and buy a little portable aircon machine. Make sure it's at least 12,000 BTU,and ideally get one where you don't have to empty the water as it's exhausting to have to get a little bottle out and siphon the water and dispose of it. More expensive models you don't have to do this and the water 'drips' out the hose onto the floor outside.
    Last edited: Jul 19, 2017
    RL_sparky, ahimsa, AndyPR and 4 others like this.
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

    I asked the same question a couple of weeks back. The only thing I did for the heat was use ice blocks in a tea towel. I forget who recommended this but it helps if you pit them under your pillow at night. For the hay fever, I've been experimenting with SAMe which seems to be having an effect but I've only been taking it for just about 2 weeks so it's a bit too early to tell for sure.

    I'm dreading the winter though....I always get colds and GI infections. Can't win can we?
  5. ryan31337

    ryan31337 Senior Member

    South East, England
    Hi @Thinktank,

    I'm in complete agreement. In periods of long remission years ago I used to love being in the sun, but now I can't stand heat, let alone direct sunlight.

    Fans, cold showers, damp/iced towels & increasing my already high electrolyte & water intake help somewhat. I have to reserve coffee for very special occasions, it helps immensely but the payback is not good.

    Regarding the cetirizine, you might want to give it a go for longer if you haven't tried already. I too had lowered BP upon starting, and again on each dose increase. It also made me quite groggy. These side effects lifted after a week or so and I do think it is helping some of the potential POTS/Mast Cell Activation overlapping issues. I take 20mg daily and haven't had any very hypertensive episodes since, other allergic aspects are also improved as you might expect.

    ahimsa, AndyPR, leela and 2 others like this.
  6. Valentijn

    Valentijn Senior Member

    I'm in the Netherlands too, and it's sweltering even out here on the Wadden Islands. Damn storms keep passing by far to the east or west, so we can't get a good rain to cool it down.

    I skipped lunch since it's too bloody hot in the restaurant, and there wasn't enough shade outside since they didn't put up the umbrellas. I'm staying slouched or laying down mostly, drinking lots of water and cooling myself with a damp towel. I did drink some fruit juice for calories, but don't think my circulatory system could handle adding digestion of solids to its current burdens.
  7. dangermouse

    dangermouse Senior Member

    OI is really bad in this heat. I'm having the salts, plenty fluids, some coffee, contracting glutes and making fists.

    Ah, I wasn't aware that my current chronic nausea could be related to increased OI.

    I get hayfever bad too. I can't take antihistamines so use Prevalin nasal spray and Haymax nasal balm.
  8. hellytheelephant

    hellytheelephant Senior Member

    S W England
    Summer is supposed to be my good time of year!!!!o_Oo_Oo_Oo_O:aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh:
    but the OI is BAD this year.....feel very 'Potsie' ( as I tell my husband). Am on electrolytes that say not to take more than twice a day, but I am tempted to do more, as otherwise I just pee liquid out......TMI!
  9. jimells

    jimells Senior Member

    northern Maine
    I have found cetirizine to be a "miracle drug". Histamine causes vasodilation and lower blood pressure - this is what happens in anaphylaxis. Fortunately my body responds with a big release of epinephrine/norephinephrine - the same stuff used in epi pens by people with anaphylaxis.

    The elevated epinephrine causes lots of unpleasant symptoms, as it causes vasodilation of blood vessels supplying large muscles (so we can run from danger or stand and fight it) and vasoconstriction to brain, kidneys, gut, and skin, with the net effect of overall higher blood pressure, sometimes too high.

    The discolored, cold, clammy hands and feet are unpleasant and aggravate toe nail fungus, but the very last thing I want is more vasoconstriction to the brain - I have enough trouble with cognition already. For a long time I treated these hyperadrenergic symptoms with alpha and beta blockers, with limited success.

    Now I treat the excess histamine instead, with ceterizine 5mg twice a day (an histamine H1 blocker) and 1/2 tablet of tagamet (100 mg cimetidine - it's an H2 blocker). I find I now have little need for alpha and beta blockers, and there has been no POTS crashes for the past three months. The IBS may be improved as well.

    I can't think of a good reference right off hand but I remember reading that heat can activate mast cells, and that has been my experience, e.g., "heat rash" on the chest. A quick search of Pubmed brought up this interesting study:

    Heat induces adenosine triphosphate release from mast cells in vitro: a putative mechanism for moxibustion

    I'm not particularly interested in traditional chinese medicine, but the finding of ATP release caused by increased skin temperature could be very relevant for us. It fits right in with Naviaux's Cell Danger Response theory, which includes the idea that extracellular ATP warns surrounding tissues, in this case that "It is too hot".

    When I started on the ceterizine most of the itching was gone right away, in less than a day. It took maybe two weeks to completely stop the hyperadrenergic episodes.
  10. Revel

    Revel Senior Member

    My elderly dog was struggling in our recent heatwave (as was I) and so I bought her a large, gel-filled doggy cool mat.

    It takes her a little while to accept new experiences and so at first she flat refused to even go near it for several days . . . . and so I borrowed it. It was fantastic!

    As soon as my dog discovered the hidden comforts that the mat provided, she reclaimed it as hers and now I am left seriously considering getting one for myself. The effect lasts for about an hour and then you are supposed to leave it to restore it's cooling properties, but I found that if I turned it over I got longer use out of it.
    Thinktank, mango, ahimsa and 5 others like this.
  11. keenly

    keenly Senior Member

    I have been trying to get as much sunlight as possible recently, but I feel much worse now.

    We need the UV light, yet the heat causes vasodilation so it is a very tricky situation.
    Last edited: Jul 19, 2017
  12. Mij

    Mij Senior Member

    I wear a Frogg Togg chilly pad (cooling towel) around my neck. They have other brands that work too. Serena Williams advertises one.
  13. Invisible Woman

    Invisible Woman Senior Member

    arewenearlythereyet likes this.
  14. bombsh3ll

    bombsh3ll Senior Member

    I really used to love summer before I became ill but now I also struggle with the heat.

    Things that help me are a small hand-held fan and pack of frozen peas or other vegetables to the back of the neck, plus tons of fluids salt and compression stockings. Also I have smoothies or complan rather than solid meals to limit diversion of blood flow to the gut.

    That's a great idea - why do they not make those for humans?!
    sb4 and arewenearlythereyet like this.
  15. Hilary

    Hilary Senior Member

    I don't like too much heat but humid heat is much,much worse for me than dry heat. I seem to be especially badly affected by drops in barometric pressure. I'm not sure what the pattern has been over the last few days in south east uk but today - certainly very heavy and humid - I have been much worse - exhausted and a lot more generalised pain, especially in upper back,shoulders and arms.

    I had a tilt table test years ago which was negative but haven't been tested for POTS/OI in recent years. I haven't felt at all faint or dizzy today, just very unwell and widespread pain/flu-like achiness. Anything to do with OI?? I'm feeling nearly as clueless as I did when it all started, 24 years ago..............:(
    ebethc and arewenearlythereyet like this.
  16. kangaSue

    kangaSue Senior Member

    Brisbane, Australia
    @Thinktank Do you feel you have a normal sweat response to heat? Autonomic Neuropathy is a common co-morbidity to have in those with OI/POTS and sudomotor dysfunction (inapproppriate sweat response) is often part and parcel of Autonomic Neuropathy.

    Autonomic function tests of QSART and TST are done to determine sudomotor dysfunction. This can be from the premature breakdown of acetylcholine and the first thing a Neurologist commonly resorts to is a trial of pyridostigmine (Mestinon)
    ahimsa likes this.
  17. Valentijn

    Valentijn Senior Member

    Doesn't really matter if we can sweat, when it's this humid. It won't evaporate, hence no cooling from it.

    Luckily it should stay cooler today, though humidity is currently 90% or higher in the entire country, and the temp last night didn't get below the level of a mild summer's midday.
    ahimsa and dangermouse like this.
  18. kangaSue

    kangaSue Senior Member

    Brisbane, Australia
    It matters if you can't sweat. I live in the sub-tropics and can't raise a sweat standing in the midday sun when it's 35 deg C with 90% humidity.
    sb4 likes this.
  19. ahimsa

    ahimsa Rarely on PR now

    I don't know if these are similar to the one @Revel got for the dog but cooling mats that are meant for people do exist:

    Not an endorsement--I've never tried it! (this brand or others) I just wanted to mention that they are out there.

    I have tried those neck scarf coolers - the ones you soak in water - and they worked okay (better than nothing).
    Last edited: Jul 25, 2017
  20. rosie26

    rosie26 Senior Member

    Do you take this in the morning or later in the day? I plan to try this soon, if I can get hold of it.

    I stopped taking cetirizine over a year ago but thinking of taking it again. I had a few years break from headaches but I have been getting headaches daily for the last few months, sore neck and discomfort laying my head on a pillow. Feels like a pressure headache up the back of neck. Not sure what is causing it, sinuses, overdoing, etc.

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