What Are Your Heat Intolerance Symptoms?

[Birdlady]

Hey everyone. I'm not very active on here anymore these days, but I have a question for all of you if you don't mind taking a few minutes.

What exactly do you feel or what do you mean when you say "heat intolerant". I'm starting to wonder if I'm showing signs of MS or if this is just another progression of POTS.

If anyone knows the difference between heat intolerance in MS and heat intolerance in POTS that would be very helpful too.

Lately for me, the left side of my face starts to twitch. My left arm and hand begins to shake almost uncontrollably . I have to hold my hand, so people don't see it. My left leg doesn't want to work well. Then of course add on rapid heart rate and I feel like a mess.

Thanks so much!

[issie]

Dana, I've had that sort of tremor for a long time. In fact, my first DX was Parkinson's ---which was not right. I have not tested positive for MS ---so hope that gives you a little more peace of mind. I still have those tremors but, they are not as often as they were before. A lot of the time, certain lights will trigger them with me. Also, being overly tired or getting nervous or overwhelmed. So, no one has been able to explain what it is ---but, I just think it's over response of my autonomic system and it is manifesting in a tremor.

Issie

[Tobiano]

I also have tremors, but these are more related to other triggers. My heat intolerance symptoms include nausea, blood pooling, visual disturbances, feeling light headed, fatigue, and decreased muscle tone. I often get overheated in rooms that are regular temperatures. I'm still wearing my spring coat and t-shirts this winter! A cooling vest seems to help.

[SaraC628]

I get very tired, very quickly if I am in a place that is too warm. I start to feel like I could just fall over, I have a hard time concentrating. I get nauseated and just have a general feeling of being really unwell. Most the time, it is so bad that I want to take my clothes off, almost like I can't stand to be wearing them. I also have a tendency to get hot flashes. I will suddenly just get really, really hot in a room that is not warm. I have to turn on an overhead fan in order to cool down. This will happen in a room in which my husband is cold, and he used to always being complaining about warmth before me. When this happens I will feel like I am going to start pouring sweat, but I don't really sweat.

[sue1234]

I had read up on the MS boards beginning a few years ago, as my heat intolerance presentation seemed to parallel theirs. So, I'm not sure if there is much difference, from what I understand. If a room seems normal to someone else, I am hot. I need a fan blowing on me at normal temps, or I flush. My face gets hot first(and red), then my heart races, then my upper body gets hot. My hands swell at this time.

If I am outside where it is summer hot or humid, I immediately feel my heart race. I am HOT all over, especially my face. My hands and feet swell, and I can just feel the blood pooling. My vision gets blurrier, like I cannot focus. Of course the adrenaline kicks in and I feel anxious. For the most part, I don't sweat. I may have a slightly moist underarm, like it tried to sweat but could never get going.

To me, being in heat just feels like an emergency.

[Birdlady]

Ok well I'm hoping this is just "normal" then. I suppose it's just a progression of POTS. I have had severe heat intolerance since I can remember (age 9?), but I never had these types of tremors with it though. I do get the normal jitters/shakey hands when I'm upright too long, but this feels much different. it is actual weakness.

I also overheat in normal room temperature, which is so hard to deal with at times. I always say heat intolerance is hands down my worst symptom above everything else I have. I wear tank tops/short sleeved shirts all the time and only wear a spring coat out even when it's really cold.

Today it is 44 and my body is having trouble adjusting. It was almost too hot for me. Ha!! We were driving and I had the window down so I could get cool. I took my coat off and still it took a long time until I felt slightly ok.

[Angela]

i am never comfortable, either too cold or too hot albeit I passed the sweat test thingy I had done 1 year ago. usually too cold at 70 degrees tho but in az it gets super hot in the summer and I can't stand it at all..... i was raised in midwest so used to humidity and lotsa rain. I notice that I can always tell now when barometric pressure is off, before rain, my body aches like I have arthritis or something. Also, My big sis has ms not sure the correlation but I believe pots is progressive. she says my symptoms are worse than hers except now she feels like a dumb blonde (no offense anyone, and I am a natural dirty blonde). I feel like if I could describe how I feel it is a cross between parkinsons and alzheimers....i.e. shaking, trouble thinking and arranging thoughts and people at work noticed my tremors before I was dx'd with pots. So, yeah, not to be negative just my personal opinion, but I believe long term pots will progress to other disorders and dx.s

[sue1234]

I forgot that I when I get overheated and flush, I get extremely itchy. It is something that scratching would not cure. I have always wondered about this, as I had an itching problem about 25 years ago. After showering, my legs would drive me crazy from itching. I went to a dermatologist that had NO clue why. With time, I learned to quit taking a hot shower and keep it barely warm, and that cured the itchy legs. Years later I was reading that itchy legs after hot showers can be a sign of polycythemia. It made me remember that my gyn around that time had told me my labwork showed I had a high hematocrit, so I might need to donate blood to keep it lower. Somehow it resolved itself without the blood donations.

So, now I wonder if maybe something similar is going on. When I get hot, is my blood "thick" and have a hard time getting through the smaller vessels during vasodilation? I think there is a clue there somewhere.

[Birdlady]

I feel like if I could describe how I feel it is a cross between parkinsons and alzheimers....i.e. shaking, trouble thinking and arranging thoughts and people at work noticed my tremors before I was dx'd with pots. So, yeah, not to be negative just my personal opinion, but I believe long term pots will progress to other disorders and dx.s

I agree with you. I don't' like to scare newbies on here, so I don't post on those threads. However outside of a miracle, I think things will only get worse for a lot of us. I have definitely gotten worse over the years. Yes my heat intolerance feels like a cross between of Parkinson's and Alzheimer's. That's a good way of putting it. I suppose with my recent vision problems, I have started to wonder about MS. But who knows... I guess I just wait and see what happens!

[kalamazoo]

I have severe heat intolerance that makes me itch flush and turn very red. Haooens when I'm nervous or hot. Also my hands swell and so do my feet. My hand veins particularly swell. I'm moving to seattle to get away fron freezing cokd becayse that also affects me. Hopwfully it wint be too hot there. Excuse my mispellings, I'm on my phone

[HopeSprings]

Sounds like you have two things going on - heat intolerance, plus you're feeling hot when it's actually not, which is something different I think. I'm not sure what that is? Maybe the inability to properly regulate temperature due to faulty ANS? You're overheating when you should be cooling? I feel hot in the morning when the adrenaline and tachycardia are at their peak, but quickly become cold as the day goes on, then have the opposite problem and can't warm up. My heat intolerance happens when it is truly hot in my surroundings and I feel heaviness in my chest, feel like I can't fully breathe, weakness, limbs feels heavy, pooling, veins bulge. I agree with you and Angela that this feels like it's progressing - but to what?

[Kris4444]

My hands swell and get blotchy. I flush very red, my heart races sometimes (I noticed this while laying out trying to get some sun which I probably shouldn't have been doing due to autoimmune issues). If I exercise I will have vertigo when i stop exercising an it will take me about 3 hours to stop sweating.

After showers my legs and arms will itch horribly. I can't take a hot shower or bath.

I am also intolerant of cold and have Raynaud's. I have cold urticaria and will break out in hives the day after I get cold. Weird. I need to live in a bubble, unless it's 75 and sunny with a slight breeze I'm miserable.

[Relax86]

I think many of us here have symptoms that parallel MS. The one thing to think about is that there are very few POTs posters who actually do have MS or who post "guess what guys I don't have POTS it's been MS the whole time". My point being is that although MS is mysterious and tough to diagnose I think POTs is more difficult. My heat intolerance has changed over time from profuse sweating to lack of sweating, to becoming short of breath, tremors, nausea, and perceived unilateral weakness UE and LE. One of the reasons I say perceived is that I always feel like my R upper extremity is losing strength. It seems like my grip has worsened and I tremor more in that hand, my ear pain is right sided as well as my neck. I always have veins bulging out of that hand followed by tachy, and lightheadedness...but objective strength testing has not changed and my deviation between R and L has remained the same using dynamometer testing over the course of the year. I have some flares that make me certain that I have MS but realistically it just hasn't been proven true thru testing. Good luck and hang in with the tricky and every changing life of POTs

[kalamazoo]

Wow this is all completely hitting home. I was actually originally diagnosed with erythromelalgia because my symptoms were very presetna dn used to be my main symptom. Now I just have POTS.

[Birdlady]

Thanks everyone for chiming in here! I'm on my 13th year of POTS, so I definitely know the ever changing POTS. haha! It seems like things are progressing rapidly for me. I woke up with some vision loss in my left eye one morning and it's never returned, then add on the left sided weakness, pain and tremors and it really got me wondering.

I definitely do not get flush or the itchy, blotchy skin. That's interesting a lot of you seem to have that component! The reason why I cannot get hot showers is because my HR will be 170 afterward and it feels like my heart is going to pound out of my chest cavity. The shortness of breath is unbearable with a HR that high, so I have to lie down and cool off.

I'm not looking forward to Spring and then Summer. I don't have air conditioning.

[issie]

Dana,

If you have those questions ---get checked out. Especially with the eye thing and most of the problems being on one side (although one side of me is worse then the other side too). But, it's better to be safe then sorry. Maybe, a good neuro would be able to answer these questions for you.

I don't know how you stand the summer heat with no air conditioning. I'd be horribly ill from that. I don't like extremes of either type.

Issie

[looneymom]

This last summer was horrible for my son. As a mom, I didn't really understand what heat intolerance was for a POTS patient. He would shake and have termors from his waist down. He would flush easily and his blood pressure would fall down to 60 over 42. The air conditioner was set at 70 and he just stayed in the house. Usually in the winter time, our house is heated by wood stove. However, because we are having a mild winter in Oklahoma, I have just used central heat set at 70 and he has done much better with temperature regulation. Hope this summer is better and milder than last.