POTS- is it regional

[PattiL]

Hi Everyone,

I tried looking this up on previous posts and couldn't find anything. Does anyone know if there's been any type of study done on whether POTS could be somehow related to where you live? It seems like there are so many people from the Midwest. Could it be because they're diagnosed easier/sooner b/c of the Dr's that specialize in POTS are there? Could it be something in our environment. I know there's people in Fla, out west, Canada and Europe, it just seems like more come from our region. Do other people just not know about the site, or possibily not know what they have yet? Just wondering.

Patti

[Ernie]

Hi,

My opinion is that there are more people diagnosed in certain areas because they have better specialists, ie Toledo.

When dysautonia get more known we will be surprised to find out that there are people from all over the world!

Ernie

[persephone]

Is the midwest hot?My own view is that extremes of temperature could be to blame for higher incidence of pots- you know they discovered that the further north of the equator you live, the more likely you are to suffer from MS. Weird.

Though I defer to the font of all knowledge (also known as Ernie)--it could just be that there are more specialists there.

I'm in the Uk, incidentally. Iknow of about 20 sufferers here.

[Dawg Tired]

I have probably always had some degree of problems and I've lived all over the US. But I started really having problems when I had lived in Montana for a couple years. It was HOT up there in the summer and we had no AC.

[Sunfish]

i'm 99.9% there hasn't been any type of technical medical study so the only "benchmark" would be membership/participation in certain organizations, medical center research, etc...which obviously would not be objective.

i know what you mean though. there do seem to be a lot of us midwesterners - even though i deflected for 8 yrs by going to maryland - but i also think there's a tendency to "see" what is similar to oneself. i.e. if you have a red car you notice how many red cars there are, etc. my guess is that it's probably a combo of both.

p, the midwest sure can be hot and sticky at times, but not more so than most other regions in the states, and a lot less than some.

the midwest tends to be an allergy hotspot but by no means exclusively.

i know when i was at the NDRF conference a few years back there were lots of folks from lots of places.

but i would say that i've still noticed the midwest thing so i'm definitely not discounting it...for who knows what reason....perhaps some of it is the doctor thing.

my mom & another neighbor of ours (at my parents' in toledo) whose daughter my age has dysautonomia joke - but with a slight bit of seriousness - about the possibility of our neighborhood being sprayed for gypsy moths being the culprit since there are the two of us as well as one or two others in our neighborhood. more than anything it's the wanting to have a "why." (i'm not negating the environmental exposure possibility for some but it really doesn't make sense for us re: our neighborhood, symptom onset, etc. so in our case it's pretty far fetched).

okay, ramblings over. maybe i'll have to see if my returning to the midwest from the midatlantic does anything....although things certainly weren't any better for me out east...

:-)melissa

[yogini]

Here is a link to an old discussion on this topic, which is pretty interesting.

http://dinet.ipbhost.com/index.php?showtopic=249&hl=ohio

Don't forget about us folks from the Northeast - there seem to be a lot of us too.

I think Michele is putting together a map of our locations soon, so that will be really informative.

Although there are fewer doctors on the west coast, I wonder if weather is also a factor. For one thing, many of us get POTS (or get worse) following viruses which might be more frequent more in cold places. And it seems like we have more people here from Canada than California!

-Rita

[Alicia479]

I am from Washington and it seems like in comparision there are fewer people in the Pacific Northwest. But I do not think that means there are less people afflicted with dyautonomia, I think there are less people diagnosed with it here. There are no docs around here that know about it. I had to go the Mayo to get diagnosed. I have been fighting with my insurance to pay for it becuase they thought I could have gotten diagnosed here. I just found out last week that they will finally reprocess the bills becuase after calling around (including the University of Washington that is supposed to be the #9 hospital in the nation...) no one they talked to knew what it was or how to diagnose. Even the doc I see now didn't know in the beginning but he has been working with Dr. Grubb to help me. So I think its a lack of knowledge that makes it seem like there are less people on the west that are afflicted with this. I hope this makes sense, I am kinda out of it today...

[PattiL]

Rita, Thanks for the link. I thought I remembered something about this a while ago! It is very interesting, I'd like to believe it's b/c of where the Dr.'s are and not something b/c of the area.

Thanks everyone for your replies.

Patti

[mom4cem]

I would venture a guess also that it is because of the Dr's. Living in NY I would think we would have dr's upon drs treating and understanding dysautonomia,,be darned if I could find one who is like that. I went to Alabama to get diagnosed. A little far for me to travel often too but I do go when I can so at least I have someone who understands and really tries to help get the symptoms under control.

[briarrose]

In my opinion there are more doctors in the MidWest & East coast that can identify and diagnosis Dysautonomia then in the West. People that live out here are dang lucky to get a diagnosis.

We might find out someday that there are environmental factors that come from the midwest though to cause a higher incidence of cases.

[Poohbear]

I live in the Southeast and I don't think there are fewer cases here at all. I think it's an issue of Dr's around the country are not yet educated. My Dr has several cases and every state I've lived in in the south the cardiologists I've worked with have other patients with this. I do think there are environmental factors that may trigger attacks (Chemical sprays etc) so in some areas people may have more trouble/ aggravating factors.

I find it interesting that whenever I travel to a particular town in Southern Georgia I always have a horrible flare of my POTS & NCS. It took me a while to make the connection. When I was working I had to travel all over the state and over time I realized there was a connection. My suspicion is that this particular town is known to be the sod & turf capital of the U.S. and I think they spray the farms with something.

The other issue is that the Dr's in the south and southeast that I've dealt with have never heard of this site or NDRF so it's harder to get the word out that there is a website though that is changing slowly.