Heat Intolerance

[flop]

Hi, I was wondering if other people have the same heat intolerance issues that I have? Increasingly over the past few years I have been unable to cope with the heat or warm environments. In the UK our summers are no-where near as warm as most of the USA so most homes and shops don't have air conditioning. I found that any temp of 20c or more made me feel really dizzy, nauseous and breathless. I had to lie down with a fan or air con blowing cool air in my face.

Now that we are in winter all the shops have turned their heating on and I am having the same problems again. At home there is no heating on in my bedroom and I am sleeping with a summer 4tog duvet and a cold fan on. Friends and family can't tolerate the cold in my room but I feel "just right".

When I saw an autonomic specialist the other week I was told that this was not related to autonomic dysfunction (it felt like he was saying that it was in my head). But when I am too hot I will be pouring with sweat (especially on my face and chest) and often flush red.

Do other people have similar heat issues? Any thing that helps this symptom (mess or tricks)?

Flop

[mkoven]

I find I'm intolerant of both heat and cold-- at temperatures that others find acceptable. In my case, some of this is ans, some of it is hormones, as there are times of the month when this is much more pronounced. After I ovulate, and before and during my period I do seem to get hotflashes (I'm 42). They are triggered by the typical things (exercise, standing, being in a warm room), but then my body can't shut the sweating off. I also get cold flashes, and am freezing quite easily, needing layer upon layer, when no one else is particularly cold. I have noticed that my hr seems to correlate with cold flashes--it's often pretty slow then.

Is there a hormonal like at all for you? I recall you are quite a bit younger than I am? Do your vitals change when you get overheated?

[potsgirl]

Hi Flop,

That's funny ~ I've always been told that our intolerance to heat or cold was definitely an ANS symptom. I hardly function in the heat. I'm in Arizona, so in the heat of summer, when it's 110 degrees (actually anything much above 80 F, I can hardly walk from a parking lot into a store without feeling like I'm going to pass out and that I can't breathe. I don't tolerate cold well either, and if I get too cold - especially my feet - I feel like I'll never get warm again. If we could just live in a place where the temps go from 70-75 all of the time, we'd be fine!

Cheers,

Jana

[Mrs. Burschman]

FOR SURE. I feel HORRIBLE when I get overheated, and it happens quite easily. Heat is my worst trigger for feeling really awful.

It seems bizarre that the autonomic specialist didn't think heat intolerance was ANS-related. I think a whole bunch of people on this POTS board would beg to differ.

Amy

[dsdmom]

Flop -

This is NOT in your head. And I've been told/read that it does have to do w/ ans dysfunction. Also, do you sweat? I lost the ability to do so when I got sick (autonomic neuropathy) and I think that definitely does not help the situation because it's harder to cool down. I do find if I drink a large amount of very cold water it will help - seems to chill me at the core. But overall I still feel very sick in the summer - I dread summers!

[sue1234]

Same here. I have almost lost the ability to sweat to heat, but do sweat when my blood sugar drops! Go figure!

I dread summer. Heat intolerance is THE WORST symptom I have. I almost hibernate in my air-conditioned house all summer long. If I am in the heat for just a short period of time, my heart starts racing. I know my body is panicking because it can't cool itself down.

[tilly]

Hi Flop .. I too suffer with heat intolerance, I go bright red .. I hate it .... I firmly believe it is to do with hormones and ANS .... mine has been worse since having POTS/IST ..... I think heat triggers it along with the hormones ......

although I have gone through the menopause, I still feel I have symptoms once a month where I will get hot flashes and these are slightly different as they feel like a flush all over your face chest and body you feel it go over you like a wave ..... where the heat intolerance is just that, you are literally intolerent to a warm environment, it is as though you body can't tolerate and adjust to it anymore ......

what I do is this ... I wear all 100% cotton clothing where ever possible like underclothes t-shirts and try not to wear any nylon materials as I find these seem to fuel the situation so to speak ..... I always take my coat off if I go into the shop as you have mentioned they do turn the heat up now here in the uk ..... since having this ANS problem I hardly ever go to the shops ...

I have also found that when I get a burst of heatintolerance, if i am in a shop, if i do not react to it quickly ( like getting out in the fresh air ) it will result in it triggering an SVT ...

Re having to keep your environment cool with fans and such I am the same ?.... but what also happens to me is ... I get a cold sweat, I wake up covered in dripping cold sweat my body is cold to touch, so how can you sweat when you are cold ?... absolutely soaking enough to have to change the bedding ?.. so what is that caused by ? Once again I think hormones ?

it definitly is not in your head .....

tilly ..

[Mrs. Burschman]

I do find if I drink a large amount of very cold water it will help - seems to chill me at the core. But overall I still feel very sick in the summer - I dread summers!

I love to slurp on ice cubes -- for the same reason.

[MightyMouse]

OMG yes--I have had severe heat intolerance all of my life. I'm always red faced and covered in sweat. Your specialist is not well informed--my doctors have told me the intolerance to heat is most definitely part of my autonomic issues. My initial diagnostic workup at the Syncope Center at Columbia Presbyterian Hosp in NYC, the doctor asked me about how I handled the heat because he was concerned about how low my bp went during the TTT. He recommended avoiding heat, including hot showers, baths, saunas, etc.

I love my cooling vest...and my misting fan. Both allow me to enjoy brief bursts of outdoor time when it's hot. When we go to Mexico, I stay by the water, I can cool off quickly that way but keeping my feet in the water, or even pulling my chair into the pool where they have a ledge that holds the chair just above the water and allows you to dangle your arms and legs in while laying down.

Nina

[fighting4health]

I get a migraine and lots of ANS symptoms when I am introduced to heat all of a sudden. I can feel it coming on, so I have to remove jackets and hats and stuff right away to prevent suffering for hours later. I found that my body temp changes with the environment temp. Guess I'm kind of like a reptile. Heat makes me sick, but cold makes me hurt. Thank goodness for central heat and air!

[juliegee]

Flop,

I know you see good docs, but I think on this one issue, your doc is WRONG! You know one function of the autonomic nervous system is temperature regulation within the body- HELLO!!!!!

I also am often overheated, sweat profusely when I exercise, and turn bright red often. I LOVE, LOVE, LOVE a cool breeze on my face, when I drive or lie in bed. I even found a beautiful (wooden based) vintage table fan that I have on my vanity.

I'm older than you and have recently begun dealing with hot flashes- OMG, not for the faint of heart . I'm controlling them (for the moment) with a bio-identical hormone patch. But, they were an exaggeration of normal life.

I, like you, have an awful time with the indoor heat during the cold winter months. I dress in layers, cute sleeveless sweaters beneath cardigans/jackets and peel as necessary. Cashmere (a splurge) is also a great knit during this time of year. It is so lightweight that it doesn't overheat me even when I wear long sleeves.

You are most definitely not alone on this one.

Cool Breezes-

Julie

[flop]

Thanks guys for confirming that this is POTS / ANS related and not just me being mental. I went down to London the other week for my appointment with Prof Mathias but he was away and I saw a different doctor instead (another consultant???).

The main symptoms that I had wanted to talk about were heat intolerance, flushing and sweating but the doctor pretty much said it was nothing to do with the ANS. He also told me that POTS was triggered during teenage years by a growth spurt and that I would grow out of it by age 24. HELLO??? I was 25 when I became ill and I am now 30 - go figure!

I did get upset during the consultation which was a really bad thing as he then started talking about the psychological aspect and that I should have CBT counselling to learn to cope better with my illness. Basically I always get my hopes up when going down to London and this doc just shattered my hope right there in the consulting room.

I did actually get referred for a "condition management program" through the program I have to do because of being unemployed and on benefits. The condition management turned out to be telephone based CBT. The nurse had me do a HADS (hospital anxiety and depression score) I scored only 1 point for depression and 0 for anxiety (the point was because I am tired). That proved that I am neither anxious nor depressed. In fact she advised that I consider helping out other people with chronic illness because I am so well adapted myself!!!

The doctor also went through my meds list and told me to stop taking :paroxetine, antihistamines, H2 blockers, montelukast, asthma inhalers, epi-pen, paracetamol and codeine as they would make my POTS worse. The SSRI was actually prescribed for POTS, and without the allergy stuff my POTS is so bad I can hardly get out of bed. I can probably learn to live without the painkillers but I get so many blackout-EDS related injuries that I do take intermittent painkillers.

To round off the disasterous trip I spent most of the 4 hour train journey back home lying on the floor of the train near the toilet (the only place without hot air blowing about) then collapsed when I went back to get my stuff from my seat. Some idiot hauled my to my feet right away so down I went again. Ended up being taken to hospital by paramedics. Had another blackout in the toilet in the hospital - whalloped my face on the sink! At some point that evening I dislocated my wrist (too dizzy to know when I did it). Have just escaped after 3 weeks in a plaster cast!!!

Feel like it was a wasted trip to London. Now I will have to wait another 6 months to hopefully see Prof Mathias himself.

Thanks for confirming that I am not mad, at least now I can carry on smiling!

Flop

[juliegee]

(((((Flop)))))

Please tell me that you weren't alone. (Although if you were, I can relate. Due to circumstances, I recently traveled a-l-o-n-e cross-country to see my MCAD doc.) That sounds like a perfect nightmare. I am so sorry. You most definitely did NOT get the help you needed. Your reaction to overheating sounds VERY extreme. I hope you get to Prof Mathias very, very soon. His substitute was poorly informed and the peripheral help sounds equally as bad. So horrible to get your hopes up (and risk your very life!!!) for that.

Hugs-

Julie

[flop]

Thanks for the hugs Julie. You guessed it - I was alone (my Mum is a teacher so was at work, my Dad is working abroad, I had hoped that my sister would come with me but she refused). Next time I will have to pay for a care assistant to travel with me - I am not going through that again on my own.

I suspect that it was the heat and the distress of the appointment combined that triggered the fainting (can you dehydrate from crying??).

My next appointment with Prof Mathias is in June 2010.

Flop

[erik]

Heat intolerance is one of my deals too. At one point I wondered if I had seasonal allergies... yes, to the summer! My season of renewal is fall... suddenly I can think clearly again and get active. I can have very quick reactions to heat... like feeling fine outside in cold then having my mind cloud over after entering a heated building.

Brings on physical fatigue too for me. I've been intrigued by some exercise physiology approaches, like the "cold hand" dealio or the crazy exercise suits that help keep core temp lower. Healthy folks have serious fatigue response to "overtemp" conditions... perhaps my thermostat's upper limit is set too low... like below my normal body temperature sometimes!

I've had exceptions to this too. Very rare times when it felt good to go out in strong heat and immerse in it. I think that was a window of what most folks experience. It seemed to correlate with with my body's metabolic state. My body seems to do various things a lot better when I can get into a "run lean" mode internally... not starving but lean, like a two-stroke engine! Basically the same state I have to get into in order hold a long slow sustained weight loss. These functions (metabolism regulation and temperature stuff) happen to intersect in the hypothalamus and related stuff ANS stuff.

I love this description here:

The main function of the hypothalamus is homeostasis, or maintaining the body's status quo. Factors such as blood pressure, body temperature, fluid and electrolyte balance, and body weight are held to a precise value called the set-point. Although this set-point can migrate over time, from day to day it is remarkably fixed.

Oh reeeeeaaaalllly? Ya' don't say!

[MightyMouse]

flop, I seriously worry about a doctor giving you such terrible advice... someone could really cause you damage if you actually followed what they've told you to do! There are some things really wrong with the US health systems, but a doctor who works with our under a leading ANS specialist here would never get away with telling patients such bunk.

See, yet another reason to hop the pond and live here!

[yogini]

Hi Flop,

So sorry that your appointment (and travel) was such a trying experience. Do you think Pro Mathias would agree to see you earlier if you told him how it went?

As for heat intolerance, I have it too. I've been on Paxil for the past 1 1/2 years and I think my heat intolerance is really exacerbated by the Paxil. I had POTS for a few years before that. I definitely became more uncomfy when it was too cold or hot after getting POTS. But before Paxil I was usually cold and being hot was a lot more bearable.

Now I dress in layers - usually a down coat with a cardigan and a tshirt underneath. I take off my coat and sweater (which are light to carry around) and just wear the tshirt once I get inside a store. I noticed boots make me too warm once I'm inside, so I try not to wear them. And keep my hair up in a ponytail. I carry a couple of bottles of cold water, which I keep sipping from to keep me cool.

Hope you find something that works!

[Mrs. Burschman]

The doctor also went through my meds list and told me to stop taking :paroxetine, antihistamines, H2 blockers, montelukast, asthma inhalers, epi-pen, paracetamol and codeine as they would make my POTS worse. The SSRI was actually prescribed for POTS, and without the allergy stuff my POTS is so bad I can hardly get out of bed. I can probably learn to live without the painkillers but I get so many blackout-EDS related injuries that I do take intermittent painkillers.

That doctor sounds like a moron. Seriously.

Amy

[Mrs. Burschman]

I suspect that it was the heat and the distress of the appointment combined that triggered the fainting (can you dehydrate from crying??).

YES. At least I have before.

[Nikki]

I think I have both hot and cold intolerance..Especially if there's a quick change from one to the other. For example, in the summer when I'm outside, and then go into an air conditioned room - I'll get lightheaded and dizzy from that. Same thing happens when it's the other way around as well.

[flop]

Yogini - interesting that you noticed the Paxil made your heat problems worse. My heat problems have been getting gradually worse for the last 3 years. And interestingly I sarted on paroxetine (seroxat) exactly 3 years ago!!

My appointments with both Prof Mathias and my local cardiologist are usually every 6 months and only a few weeks apart. Today was my cardiology appointment. My consultant was not happy when I told him about my trip to London - he had been hoping for some guidance from the London team. He said he would write to Prof Mathias - I'll keep my fingers crossed that they come up with a plan.

My cardiologist was stumped by the heat intolerance and my ongoing symptoms. The only thing that has changed over the last few years is that I have put on a lot of weight so that is getting the blame for my ongoing symptoms.

Flop

[StacyRN]

Hi Flop!

Oh yes, most definitely, heat intolerance is part of dysautonomia!!! And if it's warm, and no cool air blowing, I get short of breath, nauseated, and totally GRUMPY!

I also sweat so easily, I'm very affected by warm weather.

I think it's TERRIBLE the way most doctors treat us, OF COURSE we get upset when they don't understand, and that makes them think we need anti-anxiety meds, anti-depressants, and/or counseling! So we have to act like we aren't upset and then they don't know how serious we are about getting someone to help us... it's a catch-22 situation, isn't it?!?

Hugs,

Stacy