Best Place to Live with POTS &EDS

[AlissaAmy]

My friend with POTS currently lives in FL, which Dr. Grubb said was prob not the best environment for her due to the humidity and heat. He said San Diego would be great due to the dry air and low elevation levels. I'm just wondering if there are any other locations people would recommend or if anyone has moved to be in a better climate and felt some relief. Looking for locations in the USA. Thank you!

[mehganb81]

I do not do well in heat and humidity.  I enjoy cold as I can find ways to warm up.  I cannot say dry heat is any better for me but I think it really is dependent on tolerance.  I have done best in coastal PNW and San Francisco Bay.

[Steven]

For me it's similar to what Meghan wrote. If it's a little too warm it's difficult to function. If it's a little too cold I can add or remove warmer clothing as necessary, or move around a bit to warm up and get blood circulating, and it's easier to manage.

[bunny]

I'm a FL native and have noticed that my body does substantially better in northern climates.  When I've been in NY/Ontario/Europe, between the extra walking and climate, I don't seem to struggle anywhere near as much as I do in Florida.   

Heat doesn't get me anywhere near as much as humidity does.  For anyone living in a humid climate, I'd strongly suggest getting a dehumidifier, even if you already have air conditioning.  I seem to feel best with indoor humidity < 45%.  At my home, it's currently 78F inside, 43% humidity.  Feels absolutely heavenly to me. 

I also found cities to be more favorable for me as well.  Lots of walking opportunities throughout the day.  So I'd be able to rack up a few miles in a day, but unlike in the suburban settings, it's a little at a time.   In the suburbs, the only way for me to get the same amount of walking in is to go to the gym and try to bang it out in one or two visits a day. 

[ks42]

This is something I'm also interested in figuring out. It seems that everyone has different experiences with regard to what type of climate has helped them and what exacerbates symptoms. Here are some past threads you might be interested in.

https://www.dinet.org/forums/topic/15246-has-anyone-actually-moved-due-to-pots/

https://www.dinet.org/forums/topic/19160-where-you-would-live/?tab=comments#comment-176093

https://www.dinet.org/forums/topic/26755-altitude-and-dysautonomianeuropathy/?tab=comments#comment-249064

https://www.dinet.org/forums/topic/29174-very-sick-since-moving/?tab=comments#comment-266194'

I live in Phoenix and have for the past four years. I lived in the San Francisco bay area when I was diagnosed with POTS, and felt awful there. I improved quite a bit after moving to Phoenix, even though it was the middle of summer and I don't tolerate heat well at all. The nice thing is that our "winters" are about 75 degrees and pretty stable from October or November through April or May. And even though I'm super heat intolerant, I actually do really well in the summer here. I think it's because the barometric pressure is constantly high, it's dry, and we keep our house at the exact same temp 24/7 (70) and I'm indoors all summer. What I don't like is that we're getting more and more bad air quality / high ozone days, and the cost of living is getting too high. So we are looking to move as well. That is, IF we can find somewhere that's affordable, has an agreeable climate, and good autonomic docs (and PCPs). Which quite frankly is like hunting for a unicorn

I do know I can't tolerate cold climates, even though I'm heat intolerant and do well with cold temperatures... if that even makes sense. The fluctuation from summer to winter temps is just too much for my system, and I don't do well with indoor heating, for some reason - makes me really sick, whereas A/C is fine. So I have to be in temps that are as stable / temperate as possible.

Tucson is dry, really nice in winter, and while still hot, not as hot as Phoenix in summer. I feel pretty good there too. I do really well in Boise, ID and eastern OR during spring/summer/fall, but am guessing I probably couldn't tolerate the winters (though they are relatively mild, considering).

But it seems that everyone's experiences regarding where they feel best are highly individual. I've heard two people say they feel best in the Portland & Seattle areas, while two others have said they felt worse there. Some people feel better in Northern California which is where I feel worse. A lot of people have mentioned San Diego and Hawaii as ideal climates. I've come across one or two people who said they felt better in FL, where obviously there are others who say they feel worse there. When I had Lyme, I felt amazing in FL - pretty much symptom-free. So I guess it all depends on the individual quite a bit too. 

[DizzyGirls]

I'm a little partial to CA.😊

[Bluebonnet08]

I haven't moved, but when I visit the mountains in VA I tend to feel better- a very moderate climate.  I've considered moving though.

[Joey]

I was most symptom-free while living in Los Angeles, so I’m thinking hot/warm and dry are the best for me. I also felt pretty well in Sydney. I’m currently in London, but the climate here makes living a medium-level misery. So much so, that my own boss suggested I get an internal transfer some place else. If I could only know what that was! I lived most of my life in Poland and while I do recall having symptoms there, they’re nothing like here: the atmospheric pressure is usually too low for me to feel functional. The constant weather / pressure changes (can be a few times a day) are the worst in giving me dizzy /fainting spells. I have a hunch what would be best for me are either places like SoCal or Arizona. Or maybe Colorado because of the constant high atmospheric pressure. What would you say about Austin, TX? Another office I could easily move to is Singapore, but I wonder about the heat and humidity - it seems like people have mixed experiences with it. I could always go back to LA, but I’d prefer to move somewhere more laid back. Any advice about the US cities would be much appreciated! 

[Pistol]

hello @Joey - you sure get around!!!!  I also find that locations make a big difference in my symptoms, and hot/humid or frequently changing weather is the worst. I personally would think that Singapore would be bad for POTS symptoms, but I looked at climate charts of the other states you mentioned and Northern AZ seems to be a good choice. the south gets just too hot in the summer. I guess Colorado would be good as well, depending on the elevation. I live at 3000 feet elevation and do worse when I go down. I am not sure but I believe that the seasonal changes in fall and spring are not really extreme either in AZ, so that would help.  I hope you find a suitable place soon 😁!

[Elly]

Hello, happy to have stumbled onto this thread. Diagnosed POTS, EDS, MCAS, mixed connective tissue disorder and others. Born and raised Oklahoma, we have lived in SW Colorado for 22 years. We are currently at 7,000 feet. Change of seasons are very difficult for me. Fall is harder while Winter is absolutely intolerable. I am weaker, more forgetful and most painful during this period of year.

We are considering a move to Florida, perhaps Tampa area. From what I have read, tjere is potentially better docs in Brandon and Wesley Chapel? We have visited there a few times and other that California it seems to have the most comfortable climate for my body. While I do tend to feel more faint in the heat, the brutal cold and elevation of Colorado is a much worse feeling for me. I stay in a flare through the duration of winter.

For the life of me I cannot find a good doctor here. 22 years in and it has taken me 21 years of begging for help to get diagnosed. And for that had to travel to another state and pay cash. 

At this point time is running out, I simply cannot sirvive another winter here. I am currently feeling the worst I have ever felt. I am doing my best to sell all of our belongings to save up to move. 

Your incites are most appreciated. Is anyone living somewhere that have great medical care? That is number one on my list. Sea level being next on my list. No Texas, Oklahoma any other place that gets to freezing weather. TIA

[MaineDoug]

@Elly,

For me Downeast Maine is the place! Winter’s are snowy, long (6 months) and relatively cold (0*F) but much milder than inland (-20F). Summers cool (60*F), dry and sunny! Fall is grand! 
It’s peaceful and rural. I like the moderate temps, low humidity, cloudy skies, seasonal changes, lots of wildlife (bears, moose, coyotes, linx, owls, eagles, deer, my friends the chickadees and so much more! Even whales, seals, otters, man-of-war a mile away). In Winter really quiet. But in summer 7 million tourists come and bring the world to us. Oh, and legal, high quality inexpensive medical Cannabis (possession limit is 8 pounds, not sure what you’d need that much for, but I guess they had to pick a number)!
Not so great at healthcare quality and access I’m afraid though. I have a great local GP but I have had to move my specialty care to NYC. It’s difficult travel BUT I am seeing some of the best doctors in the World at some of the best hospitals. 
Best of all in Maine is the great community and people who care and help each other! I think my wife would leave me rather than Maine! 🌲

Interested in what areas work for others!