Altitude And Dysautonomia/neuropathy

[LillyBee]

hi there, I am trying to problem solve and hope someone out there might have some ideas. I have Primary Dysautonomia with hyper response and was recently diagnosed with autonomic and small fiber neuropathy. I have lost the ability to shiver and have decreased sensitivity in my extremities. So, I am super sensitive to cold and heat. I came close to hypothermia this winter, despite being bundled up and temps in the 30's.

Right now, we live in Chicago...and I spend most of the winter inside. We are contemplating a move at some point, to a milder climate. Trying to find a perfect climate is impossible! I don't do well with high humidity, so that limits a lot of southern areas. I thought about someplace like Albuquerque, NM, but I just realized it is about 5,000 feet high.

I know that no matter where I go, I will have a major adjustment period, but is it possible for people with hyper POTS symptoms to live at a higher altitude? Thoughts?

[gjensen]

@ 5,000' it can still get pretty cold.

Have you considered San Francisco, San Diego etc.? I live on the opposite side of the country, but they have a very mild Mediterranean type Climate. It rarely gets hot or cold.

How do you do with the humidity when the temps are mild?

[Katybug]

Just as a pleasant thought (because I'm very sensitive to Temps too), one of my doctors said that Hawaii is actually the perfect climate for me due to the mildness of the weather.

If you search the word "altitude" hete on the forum, you should find a few old threads where people were discussing altitude.

[LillyBee]

Thank you both for the replies. Gjensen I have thought about those places and they aren't totally out of the question, but the cost of living is super high, so I'd have to figure out where I could afford. Also, San Fran's cool, damp weather would be painful, but maybe somewhere inland a bit? I used to live in Portland, which is rainy and 40 degrees most of the year. Joints were killing me...

Katie, thanks for the info. I tried searching altitude, but couldn't find much. I'll try again. If only we could all afford Hawaii.

[Nymph]

I live in the southern Appalachian mountains in NC. It's not Hawaii, but the climate is quite mild. Daytime highs are in the low 80s in the summer. Winter it does freeze at night, but daytime temps are usually in the 40s or 50s. I live at about 3000 ft elevation, which is how high you need to be to have the cooler summer temps. Other than San Diego, this is the mildest climate I've lived in, and it's much cheaper! Costa Rica stays around 70 all year long, and it's not expensive. It's also mountainous - don't know the elevations. I don't know how you'd feel about moving outside the country.

[ks42]

Since getting diagnosed with my POTS last year, I haven't traveled anywhere with significant altitude, but am planning on doing so this summer (hopefully soon) so I'll report back if I do and let you know how it goes.

Albuquerque does get cold, but if I remember correctly (it's been awhile since I've been there) the cold period of winter is only from about December through February or so, and nights can freeze, but the highs are usually around 45? Might want to double check me on that though

I don't do well with extreme temps of any kind either, and definitely can't do humidity. Also, LillyBee, you're right about San Francisco - I lived in San Fran when I was first diagnosed, and was super sick there. It's overcast a lot of the time, and has that windy, damp cold thing going on most of the year (even the summer) which really bothered me. Inland (northern CA in general) also didn't work for me for some reason. Felt much better moving back to central AZ, especially during the winter when it's fairly dry and we have 75 degree temps for six to eight months, but I wouldn't wish our summers on any POTS patient, they are brutally hot! If I had the means, I'd stay in northern AZ (Flagstaff, Sedona) during the summer where it's cooler, but can't afford that just yet.

[Katybug]

Here are the links to prior threads on this subject:

http://forums.dinet.org/index.php?/topic/22912-having-to-travel-to-area-with-high-altitude-any-issues-with-this-ski-w-pots/?hl=altitude

http://forums.dinet.org/index.php?/topic/23465-change-of-altitude/?hl=altitude

http://forums.dinet.org/index.php?/topic/25410-really-tired-at-high-altitude-dont-recover-well-either-identify/?hl=altitude

http://forums.dinet.org/index.php?/topic/25842-dysautonomiapots-symptoms-with-altitude-and-low-humidity/?hl=altitude

http://forums.dinet.org/index.php?/topic/26543-sea-level/?view=findpost&p=247219&hl=altitude

http://forums.dinet.org/index.php?/topic/26567-adjusting-to-high-altitude-and-dry-climate/?hl=altitude

[Nymph]

I love Flagstaff! I lived there for four and a half years during college. POTS was not an issue for me then. In fact, I had my first severe POTS episode when I was back there visiting. I think that 7000 ft elevation may be hard to deal with. The summers and falls are gorgeous! However, the winters can have a good deal of snow and be quite cold. I also have Sjogren's so the dryness would be an issue for me. I actually need some humidity! We are all different, and unfortunately ideal environments are hard to come by. Close enough is a good bet.

[ks42]

Yeah, I'd worry about the elevation in Flagstaff too, although the summers are beautiful. Winters not so much, temps can dip below zero pretty easily. I've spent a lot of time there, but it was pre-POTS. Sedona might be a bit easier with elevation, but it's still at 4500 feet. Yeah, ideal environments are tough to find!

[LillyBee]

Thank you all for your suggestions and help! It's so great to have community support! Katybug, I read through the search results and some were a bit helpful. But I have an unusual variant of Dysautonomia. It's somewhat like Hyper POTS. So, here's the thing...I've been reading about altitude's effect on the Sympathetic Nervous System and from what I understand, altitude increases the SNS function (increased heat rate, breathing) in order to counter act the reduced oxygen in the environment and in our blood. And really, that sounds like a potential disaster for me.

What I'm wondering is this: will the altitude cause me to have more episodes, higher BP, tachy, syncope, etc? Or since I'm already functioning at an increased SNS rate, will it have little effect? Or will the Clonidine I take to level BP and HR help me cope?

These are things that are probably unanswerable. And the logical suggestion is to go visit first. The thing is that it takes me about a year to really adjust after a major move, so I'm not sure if I'd even be able to tell in that short a visit. Even if we go for a month, half of that will be spent trying to recoup from the plane ride.

I lived in Denver for a couple of years, but that was before I became this ill. Since then, I've been at sea level or in the plains.

Maybe there is no way to know...