Need Info On How These Cities Are For People With Dysautonomia?!

[ajw4790]

Hi all!

I unfortunately am looking at having to move in the near future from Ohio. Which Ohio stinks for things like weather, barometric pressure, humidity, etc... But, not so bad as far as drs. go. Don't get me wrong, I have had numerous awful drs. here, but at least Toledo and Cleveland Clinic is relatively close.

For those that have experience in these areas of the country, I am looking for information on what it is like to live in these locations??? Nothing is set in stone, or are any of them really "concrete" possibilities per se, but these are the cities that have continously popped up on the radar as possibilities. Seattle is the most likely at this point. The one other from the list of Seattle, WA, Jacksonvile, FL, and the southern/central Illinois, is Miami, FL (which I KNOW is a BAD idea for me! ). For those familiar with these locations, what is your experience on availability of knowledgeable drs, the effects of climate etc. on symptoms, etc.... ????

I am not happy about having to move, or have to move back home with my parents (who are the ones having to move for job purposes). But, I am really not thrilled at all with the choices (or lack of) of the places that I will likely be forced to live. But, at this point I can't hold a job, had to leave school on medical leave and unable to return, and I need the support system my parents offer. But, I feel like these locations stink, and that my parents tend to not understand whatsoever my apprehensions or dislike of these cities. I think they feel I am just trying to be difficult. But, I don't want to have to move somewhere that makes me feel even MORE miserable, AND have less knowledgeable drs. to assist me with the increase in symptoms.

Anyone else have this type of problem? What did you do? How do you handle it?

Any info on these locations???

I really would appreciate any information! Thanks so much!

[mkoven]

I"m originally from Champaign, though am in DC this year. I can't imagine that the weather is that much different from Ohio--so humid summers, cold, wet winters. Can't say Champaign is so great for ANS docs. I've traveled to Chicago and Cleveland for better care. I have "trained" my pcp about dysautonomia, and he's a good guy, but it's certainly not his specialty. What locations in central/southern Illinois are you considering?

[firewatcher]

I vote for Jacksonville, FL. We intend to move there when the kids finally get out of school. Mayo is there and I think there are several ANS specialists within driving distance.

The weather is great and it is a beautiful city.

I've lived in Seattle too, the weather is monotonous until summer, then it is divine!

[janiedelite]

I live in Portland, Oregon, and our climate is almost identical to Seattle. Winters see rare, brief, ice or snow. Otherwise weather is 30-40's and rainy. Spring and fall are usually rainy 40-60 degrees. Summer is sunny with highs usually 75 to 90. The thing is, there's NO DOCTOR in the northwest who knows about dysautonomia. And the only type of testing available in Portland was a TTT at Oregon Health Sciences University but last my PCP heard it was broken . My PCP and neurologist would send me anywhere, but I ended up going to Mayo in Rochester. Also, know that many houses/apartments don't have air conditioning. We are currently trying to save up money for central air.

I like our weather in Portland because most of the year, I can be outside (I just bring an umbrella). I get really sensitive to light so the cloudy days are great! We've considered moving in order to be closer to an autonomic specialist but decided to travel back to Mayo if needed instead.

I grew up in this area and really don't mind the gray days, but some of my friends who moved here from sunnier places find it depressing.

[Lizzegrl]

I have spent a great deal of time in Miami, and while there may be great doctors in northern Fla, the weather in Miami is killer if you aren't heat tolerant! I basically didn't leave the house for days at a time because I couldn't even drive to the store in the heat. Air conditioning can only do so much and you have to be outside at some point. The heat and humidity in the winter was great, but 7 months out of the year it was awful! It felt like living in a sauna with rain every afternoon to steam it up. I was exhausted constantly and my sister hated that i couldn't function, which was a big issue. We did nothing even when it was beautiful to look at, because the heat made me so so sick. Just my experience. Loved the city, the beaches, but I could only look. Could not live.

[DavidH]

I lived in Portland Oregon for some time. I agree about the weather...I had very little weather related problems. No heat stress..very little stress from cold.

[maggie]

I live in Florida and have pots. I have had it now for three years, although summers are hot I have been able to deal with it. I did get my dx at Mayo, Jacksonville, but they do not treat pots there. I have contacted all the medical schools here in Florida and not one treats pots. I have found a neurologist in

Sarasota thas a friend who works for Mayo so I see him and if we run into a problem he just contacts his friend. Dr. Thompson is on the list for Florida and I did see him once and although he himself has dysautonomia issues himself there are times when you have an appointment with him and he's not there because he is ill himself. There are good references on this site for Dr. Thompson so you would be the one to make the call on that point. I don't think there is any great area to live when you have this type of disorder. I do think having the sunny warm weather helps not get so down and am usually able to get out most of the time. Good luck in your research, hope you find the right place for you.

Maggie

[ajw4790]

Thanks everyone!

It is looking like Seattle... I am trying to go with the flow, be supportive, and be appreciative for what I do have. BUT, it is VERY hard. I don't want to move away from the very few drs. that understand me. I don't want to move somewhere that really limits me medically. Now, it is even looking like I may not be able to go to the 5 or so appmts and tests I have scheduled here over the next month and a half... There is so much to do, but so much waiting to know which direction to go in... With the heat and humidity I don't have the energy and ability to do everything in the timely manner it should be done in.

Not sure... I am overwhelmed. My parents are having to deal with so much, but at the same time it is times like these they tend to not understand "me", and I am just sometimes seemed to be expected to be wonderwoman and be able to accomplish everything in warp speed. For me it is not just about moving, it is about further loss of independence, leaving the city I had to to medical leave from grad school (so, actually closing the doors on that dream), leaving everyone I know here, leaving the drs and medical services here and the ones (Cleveland and Toledo) that although are a distance are much closer now than what they will be in Seattle.

In going through piles in the apartment I have been going across stuff from grad school and the profession I was studying. It has been HARD, I had thought that I was getting to the point that I really wasn't interested in doing it anymore, BUT I now realize I still REALLY wish I could do it. Not to mention my classmates either already have graduated and are in practice or will be very soon. It is very hard to watch them talking about interviews and jobs etc.

I know we all go through this or similar situations. It is just hard and I need to vent. I am trying to figure things out and make the best of things, but it is difficult.

Sorry, I just need to vent and put my thoughts out there. Anyone have any helpful tips on how to get through tough times like this?

Thanks for reading.

[firewatcher]

I have to tell you, Seattle is a beautiful city! The Pacific Northwest is a world and culture all it's own. The food is fresh and fantastic and there is a laid-back atmosphere that you cannot find anywhere else. From my experience it is fairly disabled friendly, although downtown Seattle would be difficult in a wheelchair (steep hills.) There are several good colleges and universities, so don't give up on your dreams yet. You may find the fairly monotonous climate is good for you, the weather just stays the same for all but three blissful summer months. When you CAN see Mt. Ranier it is truly amazing! Ask your POTS doc for a referral or start looking now. Don't fret, sometimes change is good. I loved Seattle, it occupies a happy spot in my memory.

[janiedelite]

I echo what Firewatcher said. Our weather in this area is going to be a positive change for you. Maybe you can PM other Dinets members about any good docs in that area. Yes, there aren't great specialists nearby, but my PCP will do whatever needs to be done for me. I'll fly back to Mayo if I have to, but our goal is to manage me as well as possible here. My feet hurt and burn from my neuropathy, so I wear Birkenstocks year round, and I fit right in!

[ajw4790]

I just wanted to update and say that things did seem to turn around a little bit, and now I will be headed for the Springfield/Champaign area of Illinois.

I figure health symptom-wise I will probably be about the same due to similar climate etc, so I am not as worried about that being a big negative for the move. Also, I will be closer to current drs., so if need be, a visit to them would be much more feasible.

So, not ideal, but things are looking better than they did before.

[iheartcats]

I just wanted to update and say that things did seem to turn around a little bit, and now I will be headed for the Springfield/Champaign area of Illinois.

I figure health symptom-wise I will probably be about the same due to similar climate etc, so I am not as worried about that being a big negative for the move. Also, I will be closer to current drs., so if need be, a visit to them would be much more feasible.

So, not ideal, but things are looking better than they did before.

I think the weather will be quite similar to Ohio. Champaign can get hit with a lot of snow in the winter, but so can Ohio!

Chicago does have some decent doctors who understand dysautonomia (my EP was great and I miss him since moving to SF!). PM me if you need his contact info.

Good luck in your move - moving is always stressful no matter how much one plans.

[JaneEyre9]

For me it is not just about moving, it is about further loss of independence, leaving the city I had to to medical leave from grad school (so, actually closing the doors on that dream), leaving everyone I know here, leaving the drs and medical services here and the ones (Cleveland and Toledo) that although are a distance are much closer now than what they will be in Seattle.

In going through piles in the apartment I have been going across stuff from grad school and the profession I was studying. It has been HARD, I had thought that I was getting to the point that I really wasn't interested in doing it anymore, BUT I now realize I still REALLY wish I could do it. Not to mention my classmates either already have graduated and are in practice or will be very soon. It is very hard to watch them talking about interviews and jobs etc.

I know we all go through this or similar situations. It is just hard and I need to vent. I am trying to figure things out and make the best of things, but it is difficult.

Sorry, I just need to vent and put my thoughts out there. Anyone have any helpful tips on how to get through tough times like this?

Thanks for reading.

ajw -

I also had to leave grad school on medical leave and felt a tremendous loss of independence. I can relate to everything you said here-- about sorting through your school papers, about talking to your fellow classmates. You're right-- it is HARD! I've had a several years to let go and work through a grief process, and now that my life is redefined, I'm feeling better about myself and my future. You will make it through this rough transition time. You're not alone in your feelings. It takes great courage to face losses like these. Losing a position professionally is enough to throw most people, but losing health and independence too -- that all combines to be exceptionally difficult. Be kind to yourself and remember that you are STRONG to face this kind of adversity. Feel free to PM me if you want to talk more!

Kristen

[ajw4790]

Thank you all for your replies and helpful words!!!

As soon as we are moved and I have a better idea of where I will be I will have to PM some of you for info! I am interested in any dr recommendations in the Springfield/all of Illinois/surrounding area. I have just barely looked up drs. just enough to see that there are some out there covered by my insurance. But, haven't looked further yet.

Thanks!!!

[cordila]

I know you've made your choice so this comes a little behind the 8 ball but I wanted to weigh in for anyone else considering a move. There are some glowing reports on the Pacific Northwest, in particular Seattle but I want to give you some other information to consider. I moved to Seattle in June of 2008 having previously lived in LA, NYC, Chicago, and DC. My dysautonomia dx came in NYC and the city was too stimulating to consider staying. Seattle is extraordinarily beautiful and lush and simply stunning BUT I have been worse here than other places. If you are weather sensitive at all you need to consider the following:

1. It rains. Constantly. This means you do not get adequate amounts of Vitamin D (far from it) and it can maximize depression if you are at all effected by SAD. Additionally, the wet makes the air to-the-bone cold and I found myself with one cold/flu after another during my first winter here.

2. It is very humid. I don't know about you but when I think of humid I think of Florida or Georgia. I suppose it is a no-brainer that it would be humid, since it rains all the time, but the humidity actually surprised me. It can get quite stuffy and stifling - at least that's been my experience. My body does much better in 90 degree dry heat than it does in 70 degree humidity.

3. Low pressure systems are constant. Whenever a storm front moves in (which is all the time) the pressure drops and there is less oxygen available in the air. The effect this has had on me is it has increased my fatigue, lowered my BP (no!!!) thereby increasing my pulse, and made me 'air hungry' and caused an overall increase in my symptoms.

4. Allergies! I have not been impacted by allergies in my life so I was completely caught off guard when allergy season arrived mid-April and it crippled me. Seattle is a very high-growth area so when things are in bloom there is truly no escaping the pollen. I am not particularly stuffy but histamine increases vasodialation so once my veins open further I'm a goner!

I agree with everyone that Seattle is beautiful but the above are making me consider a move too....out of here.

-Good luck on your new home! waterbaby