danceintherain Posted January 31, 2012 Author Report Share Posted January 31, 2012 Sue, I would have to respectfully disagree on that I live in Maryland and have had zero help with my POTS. I live 10 minutes from Hopkins and was told there is no doctor there that can help me. They do absolutely nothing with dysautonomia. NIH does some research but that's it, no real patient care. There is one doctor here that knows about POTS and my experience with him has been very very bad. The care for pots here is so nonexistent that I spent $2,000 a few weeks ago traveling to Scottsdale to go to Mayo in AZ. I had such a good experience there my husband and I are moving there this fall so I can be near the clinic. Don't get me started on the other problems with Maryland..... I get why it would look appealing to an outsider but coming from someone living here, I'd have to disagree I was tested at Vanderbilt and do receive my ongoing care there as well in there Speciality Clinic. I live in Louisville, KY and made the trip to Nashville every 3 months immediately following the testing for medication stablilization and now I'm on a every six month schedule.Thanks for the firsthand accounts in the two areas. Quote Link to comment Share on other sites More sharing options...
lillybits Posted February 1, 2012 Report Share Posted February 1, 2012 we were looking at moving back to az but werent sure on it. I dont do well in the heat or cold really! HA AH but we figured the mountains in az might be nice. we lived out there for 18 years before.. but now we are in wisco and see the mayo docs in minnasota.. we dont have any follow ups there tho.I know there is fort Whachuca(sp?) in the southern part of the state . Quote Link to comment Share on other sites More sharing options...
targs66 Posted February 1, 2012 Report Share Posted February 1, 2012 Interesting reading this thread to see how people react to different climates. I grew up in Washington, DC and have lived all over - now I'm in northwest England (not far from Manchester/Liverpool) and the weather is KILLING me. I love England and it breaks my heart to think I may need to leave it for something so stupid as the weather, but it is cloudy, windy, rainy and overcast all year round. Everytime I go stay with my family (in the DC/Maryland area) for a few weeks I seem to feel better.Back to the topic - I'd have to agree with Julie's post. I was diagnosed at Hopkins with NMH, which was great, but they've offered no actual treatment options. (That may also have been influenced by the fact that I was doing it on my own penny since I don't have insurance in the States right now.) That's just been my very limited experience, though. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 2, 2012 Report Share Posted February 2, 2012 I remember someone on the forum doing a study a couple of years ago about the different climates, barometric pressures, etc. as triggers for symptoms.. It was pretty amazing, because there were so many different answers of where every one was their best. Mine was being in the the salt of the ocean in the humidity of South Florida. Somehow the salt water makes me better. That's crazy sounding isn't it? Quote Link to comment Share on other sites More sharing options...
BellaRose Posted February 3, 2012 Report Share Posted February 3, 2012 Hey :-) Im from Hawaii and I thought I'd just share that sadly there doesn't seem to be any POTS specialist here, but more doctors are hearing about it and at least are starting to learn about it. Also I saw on the list of doctors there's a doctor mentioned but it seems that he is no longer practicing. I don't know if that helps or not but if you have more questions about Hawaii and what it's like feel free to message me, I'd be happy to answer any questions. Take care everyone and have a great weekend! :-) Quote Link to comment Share on other sites More sharing options...
lillybits Posted February 4, 2012 Report Share Posted February 4, 2012 we are going to go out and visit out in southwestern ill, fl and az to see where i do best. we have family out in all those states. just need to look into doctors also. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 4, 2012 Report Share Posted February 4, 2012 I was told hot weather exacerbate symptoms, I lived in Arizona and moved back home to Alaska after 4 years of enduring the heat and nearly dying. The heat promotes vasodilation, the cold makes me feel a lot better. I avoid the heat at all costs possible. Quote Link to comment Share on other sites More sharing options...
peregrine Posted February 5, 2012 Report Share Posted February 5, 2012 I've heard good things about San Diego - 60s-70s during the day and 50s-60s at night year round, and is fairly dry, with consistent humidity - actually the reason my partner didn't want to move there (he loves changing weather too much)! No experiences for me personally, though. Can you guys visit Hawaii and see how it goes, maybe if he gets some leave? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 5, 2012 Report Share Posted February 5, 2012 I dont do too badlty in the heat. I find im sensative to the cold more. Apparently that is common in those with low blood volume.Vandy might not give you lots of follow up but they are pretty much one of the groups leading the research so if you want the most up-to-date understanding of what is going on and a treatment plan based on more than just guesswork I would definately go there if I had the opportunity.As for locations - Id go with what your husband feels. Is he sensitive to barometre changes? Does heat or cold exaccerbate symptoms? Quote Link to comment Share on other sites More sharing options...
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