Humidity? Affects?

[valliali]

i am wondering how many people are affected strongly by humidity or low pressure? and how?

i had to move from the east to west coast because i was so horribly affected. i live in CA now, where i am drastically improved from the east. the humidity and low pressure systems send my sympathetic NS into major overdrive, so i often have seriously high heart rates with runs of PSVTs, a crazy intense whooshing and pressure in my neck and head and ears, panic attacks, and many other symptoms. i do really well in the dry heat.

today in CA, it is muggier than usual. i found that my heart rate is suddenly slowed. i usually exercise during lunch time, as my beta blocker allows me to do so. without a bb, my heart rate would quickly reach the 220s with little stimulation. on the bb, i can do a 40 minute exercise and keep my heart rate between 160 and 170. still higher than it should be, but i'm not totally uncomfortable and the exercise does make me feel better usually. never, ever have i excersised and my heart rate be below 150. no matter how many beta blockers i take, i have never seen my heart rate not quickly shoot up to the 150s. which has been okay with me since it's a lot better than 200 with crazy palpitations.

today, however, during exercise, my heart rate didn't go over 120. i did the same intensity and work out that i almost always do. i felt like i couldn't breathe, and even an hour later, still don't. my chest is very tight. i also have an intense pressure in the sides of my neck and my ears keep clogging and popping. i'm also eerily pale.

has anyone else had this? i am not for sure that the reaction i had today is due to humidity, since the humidity usually increases my hr a lot. i just know that i am freakishly sensitive to it. so much so that i refuse to visit my family on the east coast because i truly believe that i could die my symptoms become so intense. which is really just sad, but i can't do it. i have tried to research this issue, but i usually only find information linking pulmonary problems and arthritis to humidity and low pressure systems. Never what I have experienced. Anyone else? Anyone know why????? My doctors look at me like I am nuts.

[Tachy Phlegming]

i had to move from the east to west coast because i was so horribly affected. i live in CA now.

the humidity usually increases my hr a lot. i just know that i am freakishly sensitive to it. so much so that i refuse to visit my family on the east coast because i truly believe that i could die my symptoms become so intense. which is really just sad, but i can't do it.

I am exactly the same.

But then, there is something on this forum I don't understand.

Most of the people on here write about their heat sensitivity -- and then they live in all these places where I am pretty sure I would not be able to survive -- I know some have moved but I can't understand why there is not a whole dysautonomia community on the West Coast.

Can anyone explain how you can live in these other places and not die -- or are the two (or few [we'll see who else responds]) of us just those who suffer the worst of all of you regarding this feature of the disease -- just the way some people on here faint constantly and others don't?

[Kyler]

Valliali,

Something similar happened to my son the other day but seemingly caused by the shower. His HR would go to the 160's to 200's from just standing up so he started a beta blocker 2 weeks ago. With the BB his Hr has stayed 120 standing and 80 sitting no matter what. He swears that it has a micro chip in it that controls his HR-LOL-kids.

So he took a shower and when he got out he said that he felt really bad. His sitting HR was 63 and skipping beats and his standing HR was 100. They haven't been that low since I started checking it in May. It was very odd. we had him stand up and walk around for a few minutes but it didn't change for an hour and then it went back to 120, and 80. It was very odd???? Hasn't happened since.

We live in Virgina and it gets both hot and humid here. He definitely does better with low humidity. I was also wondering about the Humidity/pressure. I heard many years ago that POTS could be made worse by the barometric pressure but i didn't know what POTS was at the time - one of my ambulance patients had it. Her parents kept saying that the barometer must be changing.

Excellent question indeed. We are scheduled to visit my sister in California in the spring. We'll see if he improves or not.

[erik]

Seems reasonable to have such sensitivity. I would also be curious about how treatments like hyperbaric chamber might tend to go for POTS patients. It could be helpful (especially for blood volume related things) but might also backfire.

[potsgirl]

I lived in Iowa for many years, dealing with the heat and humidity, which made me very ill. I took a job in Arizona, and it's just as bad during the summer when the temps are well over 100 for big chunks of time. How do I survive? Just like the winters in Iowa (with heat), during the summers here, I just go from A/C to A/C, and try to stay in during the hottest parts of the day....From noon to 6!

Cheers,

Jana

[valliali]

Thanks guys! So it sounds like others have a strong sensitivity to humidity/low pressure as well... I suppose it is quite common in POTS, I just wish I could understand why. Doctors give me that 'oh boy, we've got a crazy one' look whenever I even suggest that I am worse off in certain climates. But the reality is that I have NO doubt at all that my symptoms are triggered by humidity and low pressure - the worst in that combination. I cannot find any explanation for it, and really wonder why this happens. I feel like if I could better understand it, I might be better able to treat it. I get the most horrible pressure in my head, with whooshing, and seriously cannot ever go through that again. My father is sick on the east coast, and I want nothing more than to be able to go home and at least visit, even if I can't move there. But I really can't. The symptoms are that intense. And there is nothing I can do for it because I don't know why I react so freakishly strong. I have a lot of other triggers to my symptoms, like caffeine, cold weather, stress, etc, but nothing even comes close to the intensity with how I react to the weather.

[erik]

Not sure how much they cost, but having a little "weather center" might be fun (or just cheat and archive the nearest weather station via internet). Don't look at the readings, but have them logged by machine or another person... meanwhile you log your subjective symptoms for a few months. Then later, look to see if something like pressure, change-in-pressure, temperature, etc. happens to match up really well. Sampling a single person is poor statistics but doing it in that "blind" manner is at least semi-scientific.

It would be no fun, but a "provocative" approach might be next... where you submit yourself to a controlled environment and your reactions are observed. Might have to go to NASA for that stuff! Perhaps they will send one of us POTSers in to space one day, to see if we get "double POTS" or if we are pre-adapted and function well.

I suppose one key "pressure" thing that would cause bad symptoms is cerebrospinal fluid pressure... but a spinal tap isn't such a fun thing (and the docs would really look at you funny if you requested one). They have to cautiously measure escape pressure, just as they tap it... not simply the standard procedure to get fluid sample. Or I suppose external pressures could indirectly affect things like the baroreflex/carotid and other cardiovascular sensors (that our autonomic systems use), intestinal pressures, eye/ear/nasal cavities, and who knows what else. There is the oddity that pressuring the eyes slows the heart rate... the ANS is a bit of a quandary.

[tinkerbella]

We are not "POTSY" we are "PRESSURE COOKERS,"......or maybe "SHAKE AND BAKES,".......I JUST LEFT another post asking why does my whole head, eye and ears feel like they going EXPLODE!!!!!!!!!!. MY HEAVY DUTY PAIN MEDS won't even touch touch the pain.... Today I was at the end of my rope. How much more can I take......I'M GOING TO GO NUTS!!!!!! BUT I HAVE TO BE HAPPY, HAPPY, HAPPY OR NO ONE WILL WANT TO BE AROUND ME...

EVERY PART OF ME IS THROWN OFF... Rashes, itching, heart rate BP........

Before I knew I was a Potsy I started saying the older I get the more I hate the hot weather, and then I started saying it about the winter.

I just can't take the extreme temp changes....

the ringing in the ears, throbing, heartbeats.....

I couldn't even try to challenge the monitor I was so darn hot, just to walk across the room I wanted to pas out.

the new paps that weren't there yesterday when I had the monitor on.

I hope it captured something as I woke up with a huge bump on my head that I have no idea where or how I got it.

the three new attempts to try to access a vein today as they tell me I'm so dehydrated as I've been drinking like a fish.... (why do they say that anyway?)

the rashes looking like the measles...

Everytime I go out in the sun now I look like a clown....

Nice as I ust found out disabled plac cads get free. (just my luck now)

Well thanks to whoever started this post so I know I'm not alone.

Is there anything that helps? Sadly, I tripped over my fan last night going to the door for a cute kid who wanted to buy something I was selling at my yard sale

for 50 cents.... Lost a exepensive fan but got rid of a painful memory....LOL Was worth every penny....

I know find a tall, handsome, single man to carry my air conditioner downstairs and see where it could be installed.

I'll have to put that on my to do list tomorrow....

I hope everyone finds some way to keep cool and think of something to be thankful for.

Today, as I was waiting for my cab at the hospital 3 young men from an area collage came in looking for their

friend they were all wearing football shirts as they were practing football. the woman at the dest told them their friend

was in ICU. They seemed clueless,(they didn't understand that icu was a serious place to be. One was acting high, and off the wall. They all had football team shirts on. I asked for there friend's name and what happened as I would pray for him.

They told me they didn't know he collapsed during practice yesterday. Yesterday was the hottest day of the year here.

I was enraged, we started to talk and they said we MUST practice every day. I'm not trying to rob the post, but parents

if you have kids in school sports become as voice as in these conditions we all know what can happen. Hot days air conditioned gyms can be used

for trainning. Lives are lost every years because of this stupid rule. PARENTS EVERY WHERE NEED TO SPEAK UP!

As for now there a young man lays in ICU, who needs prayers. thanks as my heart goes out to this young men who just started school and enough said let's remember he was a healthy young adult in the heat taking water breaks every 10 mins. We need us and get back to this post and keep drinking and you do all know when your thirsty it's too late. That is the body's warning sign that it needed water so stay hydrated in this heat...

Let us count our Blessings tonight!

Love to all~

BellaMia~

[Tachy Phlegming]

I think instead of the weather center, a doctor should employ a reliable 5-year old to accompany us from where we feel ok to where we feel sick to write down barometric pressure, temperature, and relative humidity. If we are unaffected by location but mostly just affected by position, the 5-year old could record that.

Or flying doctors could record these measurements if a patient risks flying and a doctor happens to be on the plane.

For some, this would be a better diagnostic tool than a TTT. The conditions of the TTT are artificial (not to mention expensive).

As far as low pressure, these are some of the usual considerations:

http://www.h2opaddle.co.uk/documents/WHO_f...o_fly_chap2.pdf

The effects of space travel for someone with this seem hard to gauge:

http://www.thefreelibrary.com/Standing+to+...ting-a088582292

[tinkerbella]

tachy,

i think you are sooooo right on.

I love little kiddles and what they have to say

about the world.....

i like how you think....

you gave me a big *SMILE* after a LONG DAY!

Now, i must look up you links....

Have a lovely whatever time of day it is to you.

BellaMia~

[Aubrey]

Hey you guys!! Looked up humidity affect on POTS cause my app welltory just created a chart for me where it found a constant correlation between high humidity and my stats jumping up, hr, bp, etc… so ig there’s that proven! I literally didn’t even know this was a thing causing me to get so much worse until it told me and then looked it up and found this chat. Makes sense. Gonna try to attach a pic of the chart.https://drive.google.com/file/d/1MLx-FlbMHWmzdiFyHx55rWHGlV0UWBSf/view?usp=drivesdk hope that worked where you can see 💖

[Ancient Mariner]

I live in San Diego, California, about 8 miles from the coast.  I have major problems of head and sinus pressure, headaches and weakness whenever we have hot weather (above 80 degrees).  It is especially disabling if we have hot, dry Santa Ana winds.  Change in barometric pressure is also a misery factor.  For months we have had several days of 60 degree weather then several days of 80 + degree weather.  When the fog rolls inland resulting in cooler temperatures and humidity I feel much better. 

I have secondary dysautonomia due to Parkinson’s.  However, it feels more like secondary Parkinson’s due to dysautonomia as my worst symptoms fit into the dysautonomia category.  I have no Parkinson’s like tremors, although I had severe internal tremors that pushed up my blood pressure starting in 2014.  No one knew what it was until 2018 when Neurologist #3 diagnosed the internal tremors.  

I have just declined a summer wedding in South Carolina, which from reading this post sounds like I made the right call.  Trying to explain it to relatives will be another matter.