Has Anyone Actually Moved Due To Pots?

[TXPOTS]

I have been battling POTS now for almost 2 years. After being properly diagnosed this December, I have slowly regained some function from an exercise regimen and meds. I am still extremely debilitated, but I have been about to carry out a pretty vigorous exercise regimen (outdoor jogging and my recumbent bike). I was starting to see improvement, but the hot weather here in Houston seems to be setting me back. I feel like I am losing all the progress I made. I am not tolerating the heat and humidity. I imagine the option is to stay in my house all day. I am pretty much home bound, but I have been enjoying outside time around the house. My support system is here, so I don't want to move. It is tempting though because I seem to tolerate the cool weather much better. Has anyone actually moved to a cooler climate? Just curious.

[abbriggs]

I am in Austin. I have often thought the same thing. My support system is here too and my kids are young so I don't want to take them away from their grandparents either. The heat kills me. Does taking hot baths or showers affect you as well?

[TXPOTS]

I am in Austin. I have often thought the same thing. My support system is here too and my kids are young so I don't want to take them away from their grandparents either. The heat kills me. Does taking hot baths or showers affect you as well?

Hook Em Horns! I went to UT undergraduate and pharmacy school there. Best 6 years of my life.

I can not take hot showers, but I do ok in the bath because I can lean my head back. I am jogging in the mornings, but now that the weather has changed I am feeling ill from my jogs, drenched in sweat, and getting adrenaline surges. I get depressed when I remember it won't be cool again until November here. I hate to make my kids move when they are so happy here, and the stress of the move would probably do me in anyway.

[sue1234]

I'm over here in Louisiana, 3 hours from Houston, and I DREAM of moving somewhere cool! But, realistically, our kids and families live here, and I would hate to live too far from all them. I have scanned a US map looking for cooler climates, but none are within a day or two drive from here. So, I spend 95% of my week in my air conditioned house, and the rest in my a/c car heading to doctor's appts. I was able to go to my daughter's high school softball games because the temps in Feb - April were very tolerable(winter was great!), but now I am the same as y'all--waiting for October to get here. I remember last June when it reached 100F everyday for a couple of weeks. It was awful. And then I spend all summer worrying about power outages!

If only they could invent "space suits" that we could wear that could keep us cool, then we could go where ever we wanted in the summer!

[hensor]

Have you looked at the 'cool vests' thread? Some people have had great results with using them in hot weather - I have one on order and hope it will make the difference between me being a useless flollop for the next 6 months, and actually feeling like a human being! Hopefully...

[sue1234]

I bought one last summer, and it doesn't do much for me.

[iheartcats]

We moved to Northern California and climate out here was a factor in choosing it. It still gets warm, but not the 'extremes' from Chicago. The severe cold and a few months later severe heat/humidity really played havoc with me. -30 windchill in January and 105 heat index in July is a huge variation.

I'm able to do more out here so the weather does make a difference. I think the stability is a big plus (no extreme weather variations). I think winters were worse for me because of cold extremities/breathing in the cold air.

[blueskies]

Hi all,

I rarely post here but want to answer the question about experiences with hot baths and showers. For 8 years I've been unable to tolerate either. Even when I tried swimming in a heated pool one winter I found that after 3 laps I was getting very uncomfortable (face hot, felt like I was trying to swim in a too warm bath) and had to get out. Even the water temp of my little grandchildren's bath is too hot for me to put my hand in fully.

And every summer (It's winter almost here in Australia, now == yay!) I dream of moving to a colder climate. I'm not a natural lover of cold climates but for the past 8 years I've found summer to be pretty intolerable. I try to spend as much as my time in airconditioned places as possible. And have lots of cool showers -- sitting down.

blue

[Noreen]

If there were no financial considerations, I'd move to Hawaii.

DINET has a doc listed in Honolulu, the average temp ranges from 72 degrees to 80 over the course of a year and the humidity is a little over 60 %. If they would just do something about that sun that keeps shining, it'd be perfect.

[Simmy]

This will be my third summer with POTS. My symptoms started in July of 08, while on vacation with my wife and kids, in Florida. Last summer I stayed inside with the AC blasting most of the time. This summer, although my illness is getting worse, I hope to have a slightly easier time of it because of the tools I'm now using and plan to use, based on recommendations from my friends here.

We've already had a 92 degree day here in New Jersey and I got to try out my new cool vest and, to my amazement, it really did help by giving me much extra time outdoors before I had to relent and go inside. Next, I'm ordering a handheld misting device to cool me down further. I'm also now considering getting a reclining wheelchair with horizontal leg rests (thanks EarthMother for your story) which should add even more 'human' time to my outdoor treks, especially if I attempt an amusement park with my young daughters this year.

I'm even thinking about purchasing a funny looking hat on Amazon that rests slightly above your head, has a built-in fan in the brim pointed to your face and runs off of its tiny solar panel on top, or batteries. Honestly, at this point I really don't care what I look like as long as I feel better.

My wife and I always thought we'd retire to Florida, then I got sick and that idea got thrown out the window, but then again I've learned from previous topics that humidity, altitude and perhaps even air salinity can affect how we feel too, although admittedly not as profoundly as extreme temperature changes. I agree with CatLady though that stable weather is best, but those locations are limited and out of our budget.

Reen - Bermuda sounds good too, but US citizens cannot own property there, even if we could afford it. I guess that leaves me with no other option than to use all available tools to live with the weather as best I can.

Blue - The good news is, when half of us suffer at least the other half has it easier. Enjoy the next few months. I can't wait until they find a tiltless habitable planet with constant nice weather.

[valliali]

I moved to No. California for my health as well. Sooooo much better out here. I am from the east coast, and actually would love to return to be nearer to family, but here in CA, I can work, go to school and go for hikes year-round; in the east coast for the five months of humidity and especially stormy weather, I was bed bound. The difference for me, personally, in my level of functioning is extremely drastic from climate to climate. I will be returning to the east this June for the first time in two years and am very very nervous about having a relapse. I am doing very well and the weather there is just horrible for me.

[pat57]

I moved to reduce the work load, no steps, basement, yard ,or garage to kill me- here,

[TXPOTS]

Thank you so much for all your comments. I have tried a cooling vest (and like my collection of compression hose and abdominal binders), it has not offered the relief I hoped. Simmy, I have thought about the reclining wheelchair, so I can actually get away from the house. I'm not ready yet, but I may head in that direction. It kills me that I can jog, but I can't sit or stand. I haven't come to terms with this yet. I wasn't prepared for how far back the hot weather has set me. Can someone tell me if Portland, OR has a similar climate to Northern California?

[Kujiforo]

I have horrible problems with temperatures. I feel cold all of the time, but heat makes me have spells. I can't take hot showers or baths, but I can never tell how hot the shower water is because I can't feel it as my skin and "inside" always feels so cold.

[Noreen]

Thank you so much for all your comments. I have tried a cooling vest (and like my collection of compression hose and abdominal binders), it has not offered the relief I hoped. Simmy, I have thought about the reclining wheelchair, so I can actually get away from the house. I'm not ready yet, but I may head in that direction. It kills me that I can jog, but I can't sit or stand. I haven't come to terms with this yet. I wasn't prepared for how far back the hot weather has set me. Can someone tell me if Portland, OR has a similar climate to Northern California?

cooler.

Portland, OR temp-

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec Year

?C 4.1 6.0 8.3 11.0 14.1 16.9 19.7 19.6 16.9 12.6 8.0 5.2 11.9

?F 39.4 42.8 46.9 51.8 57.4 62.4 67.5 67.3 62.4 54.7 46.4 41.4 53.4

Source: PORTLAND data derived from GHCN 2 Beta. 1426 months between 1873 and 1991

[TXPOTS]

Thank you so much for all your comments. I have tried a cooling vest (and like my collection of compression hose and abdominal binders), it has not offered the relief I hoped. Simmy, I have thought about the reclining wheelchair, so I can actually get away from the house. I'm not ready yet, but I may head in that direction. It kills me that I can jog, but I can't sit or stand. I haven't come to terms with this yet. I wasn't prepared for how far back the hot weather has set me. Can someone tell me if Portland, OR has a similar climate to Northern California?

cooler.

Portland, OR temp-

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec Year

?C 4.1 6.0 8.3 11.0 14.1 16.9 19.7 19.6 16.9 12.6 8.0 5.2 11.9

?F 39.4 42.8 46.9 51.8 57.4 62.4 67.5 67.3 62.4 54.7 46.4 41.4 53.4

Source: PORTLAND data derived from GHCN 2 Beta. 1426 months between 1873 and 1991

Looks like my idea of weather heaven. My husband is being recruited for a job there. If I absolutely can not tolerate another summer here in Houston, we may seriously consider it. I seem to do well in cold temperatures, but the heat is doing me in.

[kayjay]

I live in pa and feel horrible all winter! I am not sure that cold is any better than hot. I cannot regulate my temp well in general. I do feel better near the sea... but who doesn't? good luck to you.

[nunntrio]

I have been battling POTS now for almost 2 years. After being properly diagnosed this December, I have slowly regained some function from an exercise regimen and meds. I am still extremely debilitated, but I have been about to carry out a pretty vigorous exercise regimen (outdoor jogging and my recumbent bike). I was starting to see improvement, but the hot weather here in Houston seems to be setting me back. I feel like I am losing all the progress I made. I am not tolerating the heat and humidity. I imagine the option is to stay in my house all day. I am pretty much home bound, but I have been enjoying outside time around the house. My support system is here, so I don't want to move. It is tempting though because I seem to tolerate the cool weather much better. Has anyone actually moved to a cooler climate? Just curious.

I actually live just outside The Woodlands in Magnolia off 1488. I do dread the summer here as well. I try to go out early in the AM and late evening. I can not tolerate the day time heat. I also have a hard time extreme cold, I can never get warm. I would love to live where is was sunny (high pressure) and 80 year round. Moving is not really an option for us right now.

On another note, have you had a lot of success finding a Dr. in this area that understand POTS. I have an internist who has been willing to research things and has tried meds but he has very little experience POTS.

[TXPOTS]

I have been battling POTS now for almost 2 years. After being properly diagnosed this December, I have slowly regained some function from an exercise regimen and meds. I am still extremely debilitated, but I have been about to carry out a pretty vigorous exercise regimen (outdoor jogging and my recumbent bike). I was starting to see improvement, but the hot weather here in Houston seems to be setting me back. I feel like I am losing all the progress I made. I am not tolerating the heat and humidity. I imagine the option is to stay in my house all day. I am pretty much home bound, but I have been enjoying outside time around the house. My support system is here, so I don't want to move. It is tempting though because I seem to tolerate the cool weather much better. Has anyone actually moved to a cooler climate? Just curious.

I actually live just outside The Woodlands in Magnolia off 1488. I do dread the summer here as well. I try to go out early in the AM and late evening. I can not tolerate the day time heat. I also have a hard time extreme cold, I can never get warm. I would love to live where is was sunny (high pressure) and 80 year round. Moving is not really an option for us right now.

On another note, have you had a lot of success finding a Dr. in this area that understand POTS. I have an internist who has been willing to research things and has tried meds but he has very little experience POTS.

I'm in The Woodlands. No, I've had no luck finding a doctor locally or even in the medical center. I have a good endocrinologist downtown who performed my renin, aldosterone and water deprivation study, but she is not a POTS specialist. I see Dr. Suleman in Dallas, but it is a challenge to get follow up due to the 4 hours difference. He formerly diagnosed my POTS after a long diagnosis battle. I'm sure he would be happy to be my primary POTs physician if I lived in Dallas. I have also considered seeing Dr. Levine just for an alternate opinion because i am still so debilitated. The two strikes against living here are the heat and lack of POTS physician in the Houston area.

[futurehope]

TXPOTS,

If it's the jogging you miss, can't you join a fitness club that has air conditioning, and jog on their treadmills? Or, invest in one of your own treadmills?

If you miss being outdoors, obviously, the only option for you is if you could tolerate the temperature. Have you considered hosing yourself down, and remaining wet? It really helps keep the body temperature down.

[nunntrio]

m in The Woodlands. No, I've had no luck finding a doctor locally or even in the medical center. I have a good endocrinologist downtown who performed my renin, aldosterone and water deprivation study, but she is not a POTS specialist. I see Dr. Suleman in Dallas, but it is a challenge to get follow up due to the 4 hours difference. He formerly diagnosed my POTS after a long diagnosis battle. I'm sure he would be happy to be my primary POTs physician if I lived in Dallas. I have also considered seeing Dr. Levine just for an alternate opinion because i am still so debilitated. The two strikes against living here are the heat and lack of POTS physician in the Houston area.

I ended up going to Vandy to get a diagnosis of POTS (although it was something I had suspected for a while). You would think living in such a big city we could find help. Evevyone talks about how great our medical center down town is. I think people think I am crazy when I tell them I can not find a Dr. locally to really help.

[TXPOTS]

We are in the process of joining a gym. I am a little nervous because I don't want to stand too long around waiting for equipment, and jogging on the treadmill oddly always pulls the same muscle on the top of my foot. This only happens on treadmills. However, I am sure that I can go when it is less busy and find other cardio equipment. It's hard if I want to go to my children's activities. The cooling vest doesn't do much for me. I think I may need an entire cooling space suit as someone mentioned. Hosing off before a jog is fine, but I don't think hosing off is practical before one of my kid's soccer games. Maybe some of the dads would appreciate it. Just kidding. Just kidding. Bad, bad brain foggy joke.

This is part of living with POTS. We have to re-work our lives. I think the issue with Texas (this also includes much of the US south and the world for that matter) is that it stays very hot for very, very long.

[janiedelite]

Portland is nice as long as you don't mind damp coolness much of the year. Being just west of the Cascades, all of the weather fronts from the pacific ocean hit that mountain range and dump on Portland. It's funny because my father-in-law lives one hour east of us and his weather is dry all of the time, hot in the summer and sometimes snowy in the winter. We do get heat in the summer (I think last summer we had maybe a week over 100 degrees and a month over 90). We don't get the kind of barometric swings those in the midwest get, but from fall to spring there are various weather fronts moving in and out. For example, today it was 46 degrees at 8am and pouring down rain. Then it was sunny at 11am and 60 degrees. Now, at 2pm, the wind and rain are kicking up again. Last night we had 60 mph gusts. I do have problems with my ANS and cold. My blood vessels over constrict causing visible issues like purple toes and chilblains, and invisible issues like increased chest pain. At one time we'd considered moving in with my brother in Las Vegas... then I started having problems with burning skin and erythromelalgia in the heat! So here it is that we're going to stay. I am thankful we don't have the extreme heat and cold of other areas of the country, but for me it seems like any significant weather change is hard on my body. However, we can't think of any other area in the country that would have milder weather, that's not too warm and not too cool!

[TXPOTS]

Thankful,

I appreciate your insight. You make some very good points. I guess there is no no magical POTS free land.

[juliegee]

I can not take hot showers, but I do ok in the bath because I can lean my head back. I am jogging in the mornings, but now that the weather has changed I am feeling ill from my jogs, drenched in sweat, and getting adrenaline surges. I get depressed when I remember it won't be cool again until November here. I hate to make my kids move when they are so happy here, and the stress of the move would probably do me in anyway.

Hey TXPOTS-

Like you, I exercise hard 3-4 days a week and I am also DRENCHED in sweat. It's so embarrassing. I do a boot camp-style class & I am the ONLY one who looks like she got out of a shower (I am THAT wet!!!) at the end.

It's certainly harder in warm weather. My AM class starts around 60 degres and ends at 70 degrees farenheit. I find that drinking lots and lots of water during my work out to replace the fluid lost by sweating is helpful. I began this really tough regimen last June and found that consistently exercising outside throughout the entire year helped me acclimate.

I'd LOVE to move to a cooler, less humid climate. I live in northern eastern GA and 100 degrees farenheit, with 100% humidity is the norm in the summer. Our work & friends & LIFE is here though. Hard to relocate.

Try to keep it up. Run early. Drink. Drink. Drink. And then, Drink . I'm considering switching to G-2 rather than water now that it's heating up. That may help some. I've also switched to running shorts vs. running tights and sleeveless tops- even though it's 60 degrees. Once I start moving, the sweat starts rolling. Grrrrrr.

Just wanted you to know that you are not alone.

Hugs-

Julie