The heat..........

[Guest Julia59]

Ok----I've been meaning to post this, and reading about the cool vests brought it back to memory---although I don't know how I can forget this..................

This summer has by far been the worst summer for me since my POTS diagnosis.

I know we had pretty much the same summer last year, and I know the summer of 2002 was really bad----heat wise, but I was not affected as badly those years as I am this year for some reason.

Is it me----or can a person with POTS get wiped out from just walking from the car in the parking lot to the store? I mean it----just in 1-2 minutes i'm on the verge of collapse, and I really have a difficult time recovering once inside the store or where ever I am. I have a cold wrap for my neck that I use often, and sometimes I take it with me when we go out.

Yesterday it was real hot and muggy, but didn't feel like sitting around in the house one more day---so I took a cruise over to my parents. I took a chocolate blast to my husband on his route-(mail carrier) as i'm sure the heat wasn't very pleasant for him either. This was a little out of the way, but I just took a different route to my parents end of town. I noticed when I drank a few sips of my husband's drink I had instant relief, but so temporary------------------ .

I didn't stay long at my parent's because I was so wiped out from that little trip, I needed to get back home. When I was near my end of town I still felt pretty wiped out, but not panicked, so I thought what the heck, i'll drive to "pet supplis plus" and get that darn doggie tooth paste--(don't laugh). I have a litle dog, and if you don't brush their teeth---they will rot quickly.............

The parking lot is set up in a way where you face the building. I only had to walk about 10 feet! I had the Dog with me, and as we went into the building I though I might not make it. Then a really nice woman was helping me find a tiny tooth brush. They didn't have one----but she kept trying to help, by calling everywhere. Meanwhile everyone wants to see my Dog. Don't get me wrong, I like when people notice my cute doggy, but I made a mistake, I should have gone home. I was trying to be nice while on the verge of collapse. It was almost kind of funny. Any other time---we both zip in in out of there.

I just find it hard to believe that such a short period of time in the heat can do that to a person. Once I got home and layed back on the couch, I pretty much snapped out of it, and didn't feel too bad the rest of the night.

I often wonder if the spinal issues can add more of an issue with heat---or if I have something else going on......... Before it would take a while for me to be affected. Heck, last year I made it through 5 hours at an outdoor rally---it was rough---but I recovered. I was really surprized I made it, but it was in the lower 80s. This year I would never make it---------------------

Julie :0)

[PattiL]

Hi Julie,

I know this summer has been particularily bad for Chrissy. I think it's been extra humid this year, which isn't helping matters. The 'parking lot to store' is very similar to what Chrissy feels.The car can't cool down quick enough for her. It wouldn't be a bad idea for us to purchase some type of neck wrap for her, at least she could use it once we get into the car.

Patti

[Ernie]

Hi,

The heat is very dangerous for me. I cannot stay at a temperature above 78F for more than 5-10 minutes. If it's above 85F I can faint within 30 seconds. I have an air conditioned car and house and I have to limit myself to going where they have A/C.

Ernie

[cnm1]

I find this summer has been a tough one - partially because of the heat. I have talked to Rachel about a cooling vest especially for when she starts college and has chemistry labs. Right now the idea doesn't appeal to her - maybe if GAP starts making tough. When we were on vacation, just walking between the cars at rest stops was hard for her. It had to over 100 there - with the concrete and hot cars.

Louise

[persephone]

I am the same. I was admitted to hosp last month with a pulse of 37 cos the heat makes my pulse go mental- really high then low, or low then high. I get better once extreme heat passes though- heatwaves are just the worst.

It lowers bp too, as people get dehydrated easier.

Don't you find extreme cold makes you bad too, though? Or is it just me.

[Guest Julia59]

Yes Persephone,

Last winter I had the same difficulties---walking from parking lot to store----ect.....

I find that I am not able to warm my body up. WE used to visit my son a lot last year when he worked at the Starbucks at an outdoor mall. We would try to walk to the different stores, but I would get heart arrhythmias just walking a few feet.

The good news is that I recover much more quicly from the cold then I do the heat. I imagine our electrical system--(neurological----ANS) is mess, so heat and cold foul it up even more. I know the ANS help the body adapt to temperature extremes. I suppose the more symptomatic we are the worse it will be for us in heat or cold. I heard the UK has had a heat wave.

Ernie----I can only imagine how it must be for you..................

And yes girls---the cool neck wraps help considerably since the ANS area is the neck and lower brain. Just slap that sucker right around the area---and presto--instant relief. Mine has velcro and you just insert the ice pack right inside the pocket.

It's long and wraps around my neck---The ice insert is a soft gell like substance that doesn't get hard, so it's an easy wrap around the area. It can also be microwaved for a heat pack-----

Thanks for the replies-----------------------

Julie :0)

[Dawg Tired]

We got central heat and air this summer - we managed to pay off the house this past spring and have been working on it. Central air was the first big investment we made!

My EP ordered me not to go out in the heat under any circumstances. It has been very tough on me in the past summers with no AC or trying to get by with window units. Hubby, bless him, Mr Pennypincher has been keeping the thermostat down on 73 for me without any argument. I think he is intimidated when I hit the floor!

[Guest Julia59]

Dawg Tired,

We keep our thermostat at 70! I turn it up at night---to about 75. Lucky for us---it seems the electric bill has been reasonable even with the AC cranked----our highest was $120.00 so far.

Sure beats the Gas bill we had last year-----$300----plus. We are not alone either----everyone has the same issues with heat bills---and it's predicted to be worse this winter. Even with new windows---ect...it didn't really help matters. It's the price of OIL-------------

Julie :0)

[momofpreciousboy]

I am new here. I am in the Fort Worth, TX area--very hot 100. I am having a terrible time, too. I cannot go outside or my pulse just starts going up and up and I think I will pass out. It usually sets me up to have a pre syncope spell later on. I have a young son, and we have been unable to do a lot.

Where do you get cool vests?

Any other tips?

What would happen--would you pass out and wake up?

I have a 3 year old and it is scary to go outside, as I am afraid I will not make it back.

Thanks, Jennifer

[tracy]

Add me to the list too. The heat is terrible for me. I get so extremely hot in such a short period. My problem is when I get that hot, my stomach goes. If I start gettimg hot, I have to find a restroom very quickly. (Sorry, don't mean to get to personal) It seems if I find a restroom, and go (umm,) #2, I feel alot better, not sure why that works. If anyone has an idea, please let me know. I can't stand the heat

[goldicedance]

From what I understand, the heat is not good for us dyautonomiacs. We should, I've been told, also avoid being high in the mountains.

[dizzygirl]

ME TOO METOO!!!!!!!!!

Yes Julia!! I have terribly problmes going out side or even outside of my little AC bedroom...I have turned into a hermit crab.. i do not leave the house hardly ever.. not with this heat..and I Love to shop!!

If I do go out its lat in the evening or like 12 at night..(we have a super walmart down the road) WAHOO!! Walmart is the highlight of my shoping experience for the week.. and it is to buy gatorade and water!! LOL

and...yes Persephone.. I find that i have the same problem in the winter.. in tolerance to extreme temps... I like really close to the LAKE Erie..

so.. I live in my AC room.. my boyfriend jokes around and tells me that i keep it so cold in here that he needs to keep a snow shovel out side the bedrrom door.. to dig his way through the room!! LOL.. funny I dont think its all that cold in here... ..HAHAHAHA!

Oh tracy.. I want to add another me too.. to your #2 comment.. i find that i have that problme too..even if it is just alittle hot outside.. it ends me into a tizzy.. my BF.. like to point out that when ever we go out.. that I make a bee------line to the bathroom... Hey I cant help it!! and yes I often feel better after wards..untill I am back in the heat again.. or get over heated from standing too long...

dizzygirl..

[sallyann]

julie,

my daughters friends bring sweatshirts to our house.i keep the temp at 58 all summer long and had to put a thermometer in my bedroom because i always think the ac is broke because i am still hot.everyone calls us eskimos,so yes heat is a real problem for me.

sallyann

[Laura]

Well, you guys are all welcome at my house! I've had to put the heat on for the last week as it's been cold here- around 9 degrees celcius (what's that, about 42 farenheight?) It's supposed to warm up today, then back to cold later in the week. My husband bought me one of those neck wraps at the start of the summer, but I haven't gotten to use it yet!

Tracy, I have that experience as well.... not fun! Laura.

[momofpreciousboy]

I was just looking for a cooling vest. Are there any that you guys know of that work that you wear UNDER clothing? I cannot imagine wearing it outside clothing along with the compression hoses. I already feel like a nut in a wheelchair, with those heidious hoses with 3 year old in my lap, with my mom pushing me and pulling a basket. It is so embarrassing. What is worse is when my 3 year old pushes me. I gotta post that one sometime. Thanks JenniferTX

[lthomas521]

I still have trouble on really hot days. Eventually, I will accept this fact and schedule my activities around the weather forecast.

[DancingLight]

julia,

let's just say...this summer has been so hot at times there have been DAYS that i have not been able to leave the house at all!

talk about stir crazy. i'm already homebound...but usually i can at least sit outside in my little reclining chair, go for a little stroll, or go to the mailbox!

i think the heat simply causes more vasodilation of blood vessels so more pooling of blood, harder to pump it up where it belongs, etc. or is this incorrect?

that's what i always thought was going on physically...

emily

[Guest Julia59]

I think your right Emily----about the vasodilation------

I know Pennsylvania got slammed with the heat this year as did Ohio, Nj, NY---pretty much---the mideast--to eastern states. I think the US as a whole had a heat spell period.

I think it's more difficult for me because I have both ANS, and CNS issues----because of the old brain stem being squeezed situation. Saturday I nearly collapsed, and it was so hard to breathe. That is what scared me---the breathing problem.

Julie :0)

[michiganjan]

I think I posted about my experiences with my cool vest on another thread. I do like mine a lot. And yes, it is possible to wear it under clothes, such as under a tee shirt or button shirt, but you would not want to wear it next to your skin, as it would get the skin too cold. So I have put mine on over a light tee shirt then worn a button shirt on top, however if you do this, prepare to be somewhat bulky.

It is cool here in Michigan today. Hip, hip, hooray! I took Jeff to the hospital to get his endoscopic ultrasound this morning and it was fine in the hospital but when they put me in the waiting room where I was supposed to wait, it was very hot in there. I knew if I stayed there I would be in trouble. So I asked to be able to wait somewhere else and they let me go into the prep area and stay with Jeff until they took him away to do the actual test. Then I went back to the waiting area and lucky for me it had cooled off plenty so I could sit there like everybody else. Then I got too cold and wished I had a jacket! Boy, with dysautonomia there is such a narrow band on the thermomoter that feels right to me.

However, I am surviving as a cancer caregiver with POTS. I have just learned to ask for whatever I need whereever I am. I was the only caregiver today that got to stay with a patient in the prep room.

Michigan Jan

[Sunfish]

julie et al -

the heat/humidity is definitely a kicker for me. oddly enough it didn't used to be, but definitely is now. like some others have said, i do just just as badly with super cold temps...i tend to have about a 10 degree range where my body is most happy with varying degrees of trouble at warmer or cooler. the worse i am doing overall, the more sensitive i tend to be.

the temp today (low 70s) has been WONDERFUL, which was much needed as i was stuck out of my apartment for a lot of the day due to a broken elevator. gggrrrrrr.

i have had a good number of days this summer where i haven't been able to leave my apartment at all. which is why i REALLY need the cooler temps to keep up with school starting....i don't think "it's too hot" will go over as a good reason to miss class. luckily cleveland - while still hot & sticky - has a bit lower "hot" ceiling than baltimore.

regarding going in & out of stores, i often have a rougher time with that sort of thing than i do with more constant temps that are a bit chilly or warm. the rapid changes from extreme heat (outside) to extreme cold (often inside stores) throws my body way out of whack. and it was actually my difficulty in getting from my car to a store a few summers ago that brought me to acknowledge my need for a parking placard. i would have to sit in the parking lot, which wouldn't help much in the heat, or would drive around until there was a spot up front available.

one thing that i've found helpful - on the rare occasions when it's an option - is to park places that are covered as the car isn't nearly as bad then when returning. my new apartment is great (when the elevator works) b/c i park in an underground garage that is pretty darn cool.

re: the "why" of the problems with the heat, i'm sure the vasodialation is part of it - i know that's a lot of my issue with showers, baths, etc. - but i've also been told over the years that part of it is the body's lack of ability to regulate its' temperature well overall since this is a part of the ANS. extreme temps stress anyone's body out & we tend to be more sensitive to any stressors, i.e. colds, so it only makes sense that we'd be more sensitive. last but not least, some of us (myself included) have bodies that no longer sweat properly. parts of my body don't sweat at all & other parts don't sweat hardly at all; this is a set up for problems with the heat b/c the body is physically unable to cool itself in the way it was designed.

okay, ramblings done...

here's to not too hot & not too cold temperatures forever!

:-)melissa

Edited May 2, 2006 by Sunfish

[Guest Julia59]

Yippi----------------was it ever nice last night------people actually had to put on jackets----------------

We went to my husband's twin sisters 40th birthday party last night. It was held at one of the neighbors of his sister Lisa. (Linda & Lisa). Anyway, everyone gathered outside, and fortunately it was cool out----I was so happy to actually not have to leave the party from heat exaustion. Most of the time I wouldn't even attempt going if the temperatures are above 80.

POTs wise I felt pretty good. My neck and upper back issues were still lurking, but it was a heck of lot easier to deal with without my POTS symptoms acting up.

Melissa, i'm the same way with sweating. I don't really have the ability to sweat anymore. It's a rare occasion to see a few beads of sweat on the back of my neck. The heat was always an issue for me, but when I crashed with the POTS it got much worse. I remember when I was stable before being diagnosed with POTS----probably 1996/1997 I used to walk a lot.

Melissa, I don't know if your familiar with the Glendale/S. Detroit intersection. Anyway, I used to live off South Detroit near Glendale on Aberdeen. I would walk down S. Detroit to Glendale. Then I would continue down Glendale to the MCO (now known as MUO) Campus, and then walk around the campus and then go back home the same way.

Well the trouble is----there is not a lot of shade on that route. I used to walk it in the early evenings after work. One Saturday at about 11:00am or 12:00pm I walked the route, but this time did not go into the campus. It was in the mid 80s. On the way back I got really really shakey, and was not sure I would make it back. I had to slow way down to a snails pace. This was probably the first time I experienced a real scare. This was isolated, as I didn't really notice any real problems again until I crashed in 2000.

Believe me there was plenty of fun between that time and 2000. I used to go out on Fridays after work and drink two or three margaritas and then come home and turn on the sterio and dance like a wild girl. At this time I was beta blockers for tachycardia issues, but I had no other issues---like the fatigue ect. My symptoms were mild.

I miss those days.................... If I could just go back to that.....

Julie :0)

[Bella127]

Julie,

Take a look at my post from today about my dorm situation .. and you definitely won't feel alone with the whole "heat issue" anymore!!

I get so incredibly sick in the heat. This summer has been pretty bad -- haven't really gone out to do much at all, and even on some days I'll get out of the house by 2 pm (after taking a shower and recovering from the taking of my shower .. ) and once we get to the store .. the whole "parking lot" deal just kills me! I feel tired like I can't hold myself up, or sometimes like I'm going to hyperventilate almost .. even though I know that's now what's going on. When I get really hot, while I'm cooling down (usually after being in the parking lot, walking back to the car) I'll start to cry sometimes only because I think of everything going on in our bodies between the extreme heat to the extreme cold. Crazy what it does to us, isn't it?

The other day visiting the dorms was a HUUUGE wake-up call for me as to how badly the heat really affects all of us. It's so easy when you're not IN the heat (in your nice air-conditioned room!!) to think, "oh, it won't be that bad .. I can handle it!" BUT .. the second you step into it .. *BAM* it hits you like a freight train !!!!!

I can't imagine being "normal" - most of my friends are freeze babies and looove the 90 degree weather .. and tanning beds??!?! Yeah RIGHT! I hate the sun!!! Which is probably why I'm so ghostly pale .. .

The heat intolerance is definitely one main symptom I can't get past ...

Hope this helps

[Eli6596]

Bella,

I have never been able to sunbath either due to the heat. When I went to the pool one time this summer with my 9 and 4 year old children, I hid under the shaded awning. All the other moms were totally sun worshipping. I never went back to the pool. Almost instantly in the heat I feel BAD, and within ten minutes I feel like I am dying.

There is one good thing about no suntans. I look really, really young for my age due to lack of sundamage. I am 40,and I have people rant and rave about how I could pass for 20's.

I like the cooling vest or neck wrap idea. I will have to look into it. Thanks everyone. Yet another good practical tip that could change my life.

I only like spring and fall because of the temperature problem. My hands and feet are painfully cold in the winter. I feel like I need to wear mittens in my house! In the summer the heat thing is awful. My husband and I have thermostat wars still even though we have been married for 14 years, and even though the POTS worsened to severe 4 years ago. I always win the thermostat though! I am a penny pincher/ tight wad, but I will pay whatever for the electric/gas bill to achieve the right temperature!!!!

Karyn

[dizzygirl]

Bella--Julie_karyn..

I too can not "lay int he sun" I cant stand going from my AC bedroom out to the hall wall.. my room is the only room with AC in it.. and that heat literally smacks me in the face.. and instantly makes me feel sick.. YUCKY!

I can remember being about 11-12 yrs old.. and it would be stiffling hot and humid outside.. and I would have to go outside.. and the rest of my family would be siting there running around sweating there rumps off.. enjoying the hot weather..

snd there I would be sitting in a lawn chair in the shade,, freeazing cold.. in my favorite purple sweat pants... and not have a drop of sweat on me..

my parents used to tell me that I make them feel hot just looking at me in my sweats.. in 90-100 degree weather!! My dad used to tell me that I wastn normal becasue I never would sweat..at this time we had no idea that I had POTS.. or even that POTs existed..

they dont tease me now.. instead they hand me water and gatorade..

LOL

Linda