Can't Take The Heat

[friday7]

HI. I haven't been around for a while..I was actually feeling pretty good..well good for me. But this summer is killing me.

I just feel sick all of the time like I have a bad sunburn. I don't actually have a burn but that's the way it feels, like I'm sick from sunburn. sometimes even indoors I feel sick...I guess just coming and going outside for a bit gets me sick and then the air isn't always cool enough, being that we're having a heatwave hear in Jersey. It's really been horrible.

I was wondering if the heat exacerbates symptoms in others and what do you do about it?

[lieze]

Yes this year I notice it and I never have before.

I am using a spray bottle if I go out and it's hot.

I have to spray pretty often but get instant relief.

My pulse goes from 120 to 102 in 5 seconds after spritzing.

I realize now I don't sweat.

I do just a little from my pits but that is the only place.

The sweat there seems very concentrated and sometimes even has a harsh ammonia smell.

Stay as cool as you can and you will feel better.

[spaceorca]

The heat is definitely causing my son more problems than usual this summer. He doesn't sweat, so we know the summers will be bad--it has always been hard for him to spend much time outside in the summer. But somehow this summer has been even worse than the previous ones.

He sometimes gets relief from a coldpack. We have one of those gel packs that can be reused--you stick it in the freezer to rechill it. My son will wrap that in a towel and place it around his neck for cooling.

Hang in there!

[Simmy]

Heat intolerance is huge for us, it makes it feel like our skin is burning, makes respiration difficult and raises heart rate. I use a Coolsport cooling vest when I go out in the heat for more than a couple of minutes.

This past weekend it was 98 here and I went outside in my cooling vest for half an hour. Before I went out I took my body temperature, 98.8. When I came back inside I took it again, 100.4 and that's with the vest. It took over an hour to get back down to 98.5. Without the vest I wouldn't have lasted five minutes.

[toddm1960]

I have never been bothered like this year either, but I'm sure it's a much hotter spring / summer in the northeast. I'm a little different, I sweat buckets at the drop of a hat and never slow down. It pours out of me, but I still flush and feel over heated in minutes. It takes me over an hour to cool down, AC and cool wet towels and drinking a ton. I also found this past winter I couldn't stand the cold very well either, I got deep down shivers that shook me to the bone. I don't know if this will continue or if it's just a wave and next year things will calm down. I don't know how everyone in the southeast and southwest do it, it's hot all the time.

[jem15]

Heat makes things 10x worse for me always. Ha, and I'm from your area too, so yeah, not loving the weather! I get much more faint, weak, dizzy, nauseous, fatigued, etc.. even indoors, my AC isnt the greatest and I just cant do much at all. I did just recently buy a cooling vest, so hoping maybe that'll help. I haven't found anything to work for it, except ha, not being in the heat. I need cold AC otherwise I'm a mess.

[Brye]

Hibernate! I've been staying inside a lot this summer. I was filling the spider man inflatable pool for my kids and I was actually tempted to get in! I broke a sweat sitting on the shaded porch watching them swim!!

Brye

[lissy]

Hey all,

Its has been SO SO SO SO HOT this year , but its the 1st summer I've been able to be outside in 2 years ,I once got instantly dizzy from just standing in temps above 75 degrees in or outdoors but when spring came this year I noticed my tolerance was more flexible.On bad days I have to rush outdoor activities but it has improved I notice more symptoms based on humidity. Maybe one day I'll be better with the heat all together----former sun goddess:P

[Mary P]

Me too....so wickedly hot and humid here. I've rarely been able to get outdoors for the past month because of the heat and humidity. I think I heard on the TV news that this is the hottest summer ever. I often think I should get a cooling vest but I don't even think I could walk very far with this, so I use my walker in the indoor garage here.

mary p

[MightyMouse]

I hear ya. This is the hottest summer on record where I live, just outside of Phila, in NJ. And, feeling awful after heat exposure is pretty normal for those with autonomic problems. It's been an awful time for me--3 weeks without AC took it's toll on me, and I have had the AC back for 3.5 days and I'm still needing a ton of sleep, struggling with being nauseated, etc. I love the cold weather!

Nina

[heathmcev]

Totally. I'm in soupy hot delaware and today the heat index is 101... tomorrow's supposed to be a heat index of 110!!! When it's over 85 I get dizzy, nauseous, fatigued, and feel faint and like I must sit down very quickly. I have been using a Cobber this summer which helps a little since it cools the neck -- and I never leave the house without a cold Gatorade! But this summer none of that seems to do the trick.

I also find that going in and out from air conditioned car to hot parking lot to AC'd house or store and back out to the heat again make me way worse! Does anyone else have trouble making the transition between temps?

[Simmy]

Yes dizzyde. With us, the feeling of heat is exaggerated and our bodies are unable to compensate. It hits us like a ton of bricks. I imagine walking outside in 95 degrees for us to be equivalent to a 'normal' person walking into a 125 degree attic. On the other hand, going from heat into an air conditioned room is instantly relieving for me.

[heathmcev]

This past weekend it was 98 here and I went outside in my cooling vest for half an hour. Before I went out I took my body temperature, 98.8. When I came back inside I took it again, 100.4 and that's with the vest. It took over an hour to get back down to 98.5. Without the vest I wouldn't have lasted five minutes.

What is a normal body temp fluctuation for a non-POTSy person going from inside to out in this type of heat? Does anyone know?

[friday7]

Heat intolerance is huge for us, it makes it feel like our skin is burning, makes respiration difficult and raises heart rate. I use a Coolsport cooling vest when I go out in the heat for more than a couple of minutes.

This past weekend it was 98 here and I went outside in my cooling vest for half an hour. Before I went out I took my body temperature, 98.8. When I came back inside I took it again, 100.4 and that's with the vest. It took over an hour to get back down to 98.5. Without the vest I wouldn't have lasted five minutes.

I had never heard of a cooling vest.I found these thing like bandannas that you soak with ice cold water. I wear around my neck and that helps,but not enough.

I couldn't afford a cooling vest right now though. I"ll just have to keep inside unless it's cool enough .

I used to just go outside and soak myself with the hose when I was around the house..But this summer it just isn't enough.

[friday7]

Totally. I'm in soupy hot delaware and today the heat index is 101... tomorrow's supposed to be a heat index of 110!!! When it's over 85 I get dizzy, nauseous, fatigued, and feel faint and like I must sit down very quickly. I have been using a Cobber this summer which helps a little since it cools the neck -- and I never leave the house without a cold Gatorade! But this summer none of that seems to do the trick.

I also find that going in and out from air conditioned car to hot parking lot to AC'd house or store and back out to the heat again make me way worse! Does anyone else have trouble making the transition between temps?

Yes I'm glad to hear that from someone else that feels this way, because I was thinking that it was my imagination. It seems even when I go out in the car with the air conditioner , it makes me sick going from cold to hot to cold..I never had that trouble before. I keep thinking I wish it would cool down and I could have a nice even temperature for a little while. Then I'd feel better.

Yesterday I went to Plays in the Park..Big mistake. It wasn't bad out so I thought I could do it. I get so tried of not being able to do things. So I pushed it. The whole time I was there I felt hot. Not horrible hot but enough to make me unhappy.

Then today I woke up and felt lousy. I went to the kitchen and felt like I was going to pass out. My legs felt like butter. I felt dizzy. So I just went and laid down. I'm thinking now it must have been the heat. My whole face feels hot. And I've been in the air all day.

I guess I'm gonna have to severely limit my time outside until this heat wave breaks.

It's good to know that others feel the same way, because of all of the people around me that don't have POTS and don't understand. I keep thinking what's wrong with me? I totally disregard the fact the fact that I have an illness and it gets worse in the heat.

[friday7]

I hear ya. This is the hottest summer on record where I live, just outside of Phila, in NJ. And, feeling awful after heat exposure is pretty normal for those with autonomic problems. It's been an awful time for me--3 weeks without AC took it's toll on me, and I have had the AC back for 3.5 days and I'm still needing a ton of sleep, struggling with being nauseated, etc. I love the cold weather!

Nina

3 weeks with no AC in this weather? How did you do it? It's been so hot here this summer! Wow I thought I had it bad..My central air is broken so we put one in the window and I have to use a fan to drag it through the rooms..But no air? I think I'd dig a hole under the house and hide in it.LOL

It's good to hear this is pretty much normal for us. I just have a really hard time accepting I'm different than normal people..they just make it hard for me to realize i'm actually sick.

I made it to my support group the other day and i started feeling lightheaded. I mentioned to the therapist that this is why I can't make it every week. She said. Oh don't worry about being sick . You can come here when you's e sick. Anna is sick all of the time and she pushes herself to come"..( Anna has a pain issue like fibromyalgia I think ) It's really hard when you keep coming up against people saying things like this. I tend to think It's all in my head and push myself right into getting sick.

I gave her a sheet I copied off of this site last time. A few paragraphs about POTS and the symptoms..I'm hoping that might help.

Anyway, I'm off to soak in a tub of cold water.

[MightyMouse]

Fri, I'm still sick from living that way, but I didn't really have a choice. I wanted to go to a hotel, but that would have meant it would take longer to come up with the thousands of dollars to replace the central air. Tomorrow makes 1 week with the AC back on.

During those 3 weeks, I stayed in the basement, but the last few days it got up to about 80 in the basement, which is too hot for me. I used my cooling vest, I bought large bags of ice and put the ice in huge pots, which I placed in front of the fan in the basement (yeah, air conditioning circa 1932). I also used a water mist on my body rather frequently and then stood in front of fan for about 60 seconds of happiness. It was so hot inside the house at one point that my automatic ice maker in my fridge made exactly one batch of ice all day -- 6 cubes. Normally, it can fill the holder, which is usually enough for a big dinner party without ever running out.

I've been sleeping a lot this week and need every minute.

[Noreen]

Fri, I'm still sick from living that way, but I didn't really have a choice. I wanted to go to a hotel, but that would have meant it would take longer to come up with the thousands of dollars to replace the central air. Tomorrow makes 1 week with the AC back on.

During those 3 weeks, I stayed in the basement, but the last few days it got up to about 80 in the basement, which is too hot for me. I used my cooling vest, I bought large bags of ice and put the ice in huge pots, which I placed in front of the fan in the basement (yeah, air conditioning circa 1932). I also used a water mist on my body rather frequently and then stood in front of fan for about 60 seconds of happiness. It was so hot inside the house at one point that my automatic ice maker in my fridge made exactly one batch of ice all day -- 6 cubes. Normally, it can fill the holder, which is usually enough for a big dinner party without ever running out.

I've been sleeping a lot this week and need every minute.

Nina-

glad you got AC back. I'm so sorry that had to happen while you are still recovering from the accident and everything else.

I hope the rest helps.

{{hugs}}

noreen

[friday7]

Fri, I'm still sick from living that way, but I didn't really have a choice. I wanted to go to a hotel, but that would have meant it would take longer to come up with the thousands of dollars to replace the central air. Tomorrow makes 1 week with the AC back on.

During those 3 weeks, I stayed in the basement, but the last few days it got up to about 80 in the basement, which is too hot for me. I used my cooling vest, I bought large bags of ice and put the ice in huge pots, which I placed in front of the fan in the basement (yeah, air conditioning circa 1932). I also used a water mist on my body rather frequently and then stood in front of fan for about 60 seconds of happiness. It was so hot inside the house at one point that my automatic ice maker in my fridge made exactly one batch of ice all day -- 6 cubes. Normally, it can fill the holder, which is usually enough for a big dinner party without ever running out.

I've been sleeping a lot this week and need every minute.

OH you poor thing! How horrible! Glad you got it back.

[dazey9x]

I was diagnosed with POTS ten months ago...it came out of nowhere. I was totally healthy before that. But I work full time at a greenhouse. It has definately made life interesting. The heat is just wiping me out. No one understands why I cant get my hours in and why I look okay but say I dont feel good.

I walk around with an ice pack but at some point that just doesnt work! I have heat intolerance issues so I always feel like I am having hot flashes already! I am not sure how much longer I am going to be able to keep working there. I am too hot and once I get home I am way too tired to do anything else. I am looking forward to some cooler weather!!!

[friday7]

I was diagnosed with POTS ten months ago...it came out of nowhere. I was totally healthy before that. But I work full time at a greenhouse. It has definately made life interesting. The heat is just wiping me out. No one understands why I cant get my hours in and why I look okay but say I dont feel good.

I walk around with an ice pack but at some point that just doesnt work! I have heat intolerance issues so I always feel like I am having hot flashes already! I am not sure how much longer I am going to be able to keep working there. I am too hot and once I get home I am way too tired to do anything else. I am looking forward to some cooler weather!!!

Wow that's a really difficult issue. It must be hard not having anyone around that understands too. Have you told anyone you work with your have POTS and that the heat makes it worse? is there anyplace there that you can work that might makes things easier..say if you work in the greenhouse with the plants, could you maybe work at a register or some other place in the building? just throwing ideas out here.

I was just looking into getting help from a place nearby me that helps people with a disabilities. It surprised me what they could do to help. You might want to look into one of these kinds of programs to help you keep your job. I'm not sure what's out there in your area. You'd have to look that up. But here's a site that is kind of what i'm talking about:

http://www.direct.gov.uk/en/DisabledPeople...mmes/DG_4000347

I figure before you go and quit your job there might be some organizations that can help to make things easier for you one the job.

[tinkerbella]

The heat has been it's worst ever here. My doctor wrote a letter addressed to who it may concern that I needed a heat controlled environment, so I need to buy some air conditioners. This will only help me write then off as a medical needed expense. So even before I've purchased anything the electric bill come in and has already doubled from fans, dehumidifier, charging wheel chair, 180 dollars. I was saying how I'm I going to survive, mentioned my bill to my son and he showed me the delivery rates had gone way up and not my usage. That this most likely will be happening to everyone and they will all think it is because it is the summer and using there air conditioners. So keep and eye on you bills everyone.

I tried using just a fan for the past two days and when ever I stood my HR would jump to 149 just standing, and then as the evening cooled off I would drop to 111. These days I can't go anywhere without my BP monitor, salt tabs, meds, tons of water, Gatorade, and lots of small snacks. I can't forget the fan that goes around the neck 1.00 @ the dollar store. When you are tachy you blow it right in your face.

Bellamia~

[Kujiforo]

I don't know if this has to do with the extreme heat + stormy weather here (which makes it hot AND damp), but lately Ive been having those dreaded adrenaline rushes (if that's what they are) multiple times a day, horribly, for 10-20 minutes each episode a piece, even during the days when I am awake. Usually I only have them at night time during sleep or when trying to go to sleep. I honestly believe it is weather oriented. I've got sinuses and ear infections now as well as a tension headache I have sustained for about a week with little to no relief (going back to doctors for that soon). I get these hot flashes where it feels like I am burning up, usually following a trip from outside to inside the house, so that's why I'm thinking the weather is getting to me.

It's horrible and I am really in a slump, especially since not long before I had a full good week of little symptoms at all....

But i still believe its the hot, damp weather that is to blame for my current situation.

[Elegiamore]

Well, thanks for the thread as it may explain my problems also. I was in a wheelchair and unable to drive myself around for most of May and June. I only got in an a/ced car with my ride to doctors and infusion clinic and was let off at the doors. Then, once I could walk again, I just drove myself around doing errands and getting my physical therapy twice a week for my foot (severe inflammation caused a tendon to burst in two) and getting an IV each week.

By the weekend, my BP was up 90 points with minor heart rate increases. I even went and got an extra IV on Monday, but I'm just no better at all and unable to get my bp down.

I live in Hotlanta - no exaggeration - and the "feel like" temp with our huge humidity was between 105 and 120 today, with a high of 98 degrees. This has been going on here since May. We are talking temps over 95 degrees for 19 days in a row, for instance.

Y'all think this could cause bp over 200/110?

Thanks - more thoughts, please.

Elegiamore

[friday7]

Well, thanks for the thread as it may explain my problems also. I was in a wheelchair and unable to drive myself around for most of May and June. I only got in an a/ced car with my ride to doctors and infusion clinic and was let off at the doors. Then, once I could walk again, I just drove myself around doing errands and getting my physical therapy twice a week for my foot (severe inflammation caused a tendon to burst in two) and getting an IV each week.

By the weekend, my BP was up 90 points with minor heart rate increases. I even went and got an extra IV on Monday, but I'm just no better at all and unable to get my bp down.

I live in Hotlanta - no exaggeration - and the "feel like" temp with our huge humidity was between 105 and 120 today, with a high of 98 degrees. This has been going on here since May. We are talking temps over 95 degrees for 19 days in a row, for instance.

Y'all think this could cause bp over 200/110?

Thanks - more thoughts, please.

Elegiamore

Well, I've never had this particular issue ..maybe someone else here has. But I know that heat does exacerbate POTS symptoms so I guess it's quite possible. How about where you're getting the IV's what do they think?