[Louby]

Hello All,

Based on Denabob's excellent suggestion that we may be able to associate some of the reason behind POTS, I have come up with a small poll. (i am slowly realizing that we are the experts!)

My knowledge is limited when it comes to the certain types of illness that can result in POTS, so I have just listed Illness. reading through the boards as enable me to come up with some of the other suggestions.

SO of S = sudden onset of symptoms ( I felt this should be divided into four categories, as we may find that looking back you discover things that went un-detected, and if so / or if not it is interesting to try and establish a genetic connection.)

Depending how this goes, we should maybe also try to establish connections between skin colour, lots of us seem to be fair skinned. I know my professor has proven a link between hypo-extensive (double jointed ness) and he was looking at a blood fear link.

I have also added in trauma, as i had heard this may also be a contributing factor.

It would also be interesting to try and complete further research into how gender relates to the development of POTS.

these are just ideas... I'm sure we should try and research further into pregancy, and genetics etc... but i thought this would be a start...

[denabob]

Good idea! Although I have more than one of the choices. I had low bp and recurrent dehydration while pregnant with my youngest daughter but also threw up 24/7 for 8 months then was bed rested for the remainder. Now, I cant say which caused the other. I also have sort of a family hystory ( my mom but with different cause has alot of the symptoms - no passing out )With so few Dr.s who even know about POTS it's hard to tell how many people have it and dont know for sure! I've also had knee surgery with an epidural for anestisia(not sure how its spelled) Been in a car accident with pain to my neck. It is difficult to narrow down one thing but when my main symptoms occured nothing distinctive had happened and it has stayed with me since. Now some docs say that the symptoms can wax and wane or even sort of enter a remission state. I'm waiting for that. these polls are interesting .

[pamyla]

I'm not sure how to answer this either :D Mine started as a sudden onset due to illness. Once that was better my pots symptoms did improve, although not entirely. I think EDS contributes to the rest..... and I can recall having symptoms as far back as elementary school.

[scamelo]

Mine started out of the blue, while on vacation, after years of High Blood pressure. First symptom was swallowing problems and loss of appetite, escalated from there. Far as I know no family history and no viral onset.

[Louby]

Hi Everyone,

It may be that we would need to run a poll which was more detailed on each of the sections, it would be great to think that we could make a difference somehow...

I was limited to 10 choices, and my experience of possible causes is limited to my own personal experiences and from what I have read on the recent boards.

Mighty-Mouse, your an expert in these things, any suggestions or ideas?? I hope to discuss this with my proffesor, who is always comming up with new questionnaires, would we be able to publish these somehow - to try and help with his research, and find out a bit more??

Denabob - you certainly have been through the wars! I agree with you, i think the more info we have the better!

Not sure if you have found it yet, but the NDRF have a handbook and it is full of very useful information - I am just starting to wade my way through it.

[denabob]

I just found that site yesterday as a matter of fact. It's a little more difficult to get into than this one though I'm waiting for approval. The way I see it every little bit helps and we definitely have more time and connections to figure it all out than our doctors do! My doc encourages any input I can give him, this illness is as big of a pain to them because they cant fix it or even get anything definite in common with us for treatment!

[Louby]

Hi Denabob,

if you go to - http://www.ndrf.org/NDRFHandbook.htm

you can access the handbook, it's a PDF - quite lengthly files, but really worth it. I did not need to complete any approval processes to gain access to the handbook.

Good luck !

[briarrose]

It's kind of hard to vote because mine is multiple. Yes I had dizziness and passing out during pregnancy (OB always said that was normal.) For years after that working out in the yard, under the sun, getting hot made me syncopal. One month after my flu vaccine 10/01 I developed the tachycardia -POTS. However, my mom was diagnosed with POTS 2 weeks ago. I believe that my cousin and Aunt also suffer from this infliction.

So I have the pregnancy factor, viral (possible), Family history - definite, Oh and I am hypermobile and have said to have EDS. Hmmmm

I have very fair skin, blonde hair, blue eyes.

Steph

[denabob]

I've been reading the handbook. Thank's Louby! It has alot of useful info. Does anyone know the main difference between POTS and PAF (pure autonomic failure) also I read that POTS can be a form of autonomic neuropathy. The symptoms of that are a little different . It includes a strange symptom - the tongue has small bumps (taste buds) and with this disorder it has spots where those bumps are missing. It looks like cigarette burns is how I describe it but sometimes it's worse than others and when it is real bad they can be very sensitive to spicy foods. I was born with that symptom!! Only two people in my family are known to have these "spots" me and a female cousin of mine who by the way has mitro-prolapse valve with few pots symptoms! The handbook shares alot of info on cause and similarities to other dysautonomic disorders. I already have a list of things to ask my doc next time. My family doc told my mom it was called a geographic tongue and they didn't know what caused it but that it was harmless.So imagine my surprise when there it was as a symptom of neuropathy! I've never even told Dr. H about those spots because it didnt occur to me to.Also I saw tests called the valsava maneuver and a pet scan to test (with definite results) for PAF anyone had those?

[Louby]

I'm curling up with a good book and my handbook tomorrow!

I find it so interesting, all these things keep cropping up, you spend your whole life time thinking half of them are normal or un-related, and then it turns out they are just another symptom.

I'm so glad you found the handbook link.

[violahen]

Hi Everyone:

Well, I was born with my POTS....although I was not definitively diagnosed with it until I was 36! As a child, my parents passed off my symptoms as me being a "nervous" hysterical child....They constantly just told me to "try to control myself"....actually they still can't accept it and tell me the same thing! By the time I was 20 my symptoms were much worse so I went in for a routine physical....that was when they discovered a real problem and that it was not in my head. At 36 I finally met Dr. Grubb and he gave me my diagnosis. I am 38 now.

I DID have very difficult pregnancies...I have two sons -3 and 5. I too threw up 24/7 for the whole 9 months of both pregnancies....I attribute it somewhat to the dysautonomia and general hyper-sensitivity of my body. Also, I had much more postural difficulty while I was pregnant...I was passing out constantly....my bp also stayed very low in pregnancy...as it normally is....I always seem to be on the verge of passing out.

Over the past year I seem to be getting worse....Dr. Grubb agrees...he is not sure why...perhaps pre-menopause...in any case, it is not fun as I am sure you all know.

One of the most diffilult things to deal with is the uncertainty of it all...the not knowing....it is all so unpredictable. Also, being able to have a quality of life (to some degree) and accepting my many limitations...especially as those limitations increase as my condition worsens.

Thanks for letting me blab!

Kristen

Kristen

[butterfly]

hello,
I have POTS and it made me think when you wrote about fair skin, i have fair skin blonde hair and blue/green eyes.
butterfly :)

[porque]

Butterfly
I wondered about the fair/skin thing too cuz I am different...very dark...and not flexiable at all. I found a poll of pots and nationality...check it out.

[justme]

After years and years of tests, etc. our doctor strongly believes my wife's underlying cause is genetic. I'm sure he can't know for sure, but he has concluded that her health issues will continue to stump the medical community. He has decided to quit with the extensive testing. This is kind of a relief because after 3.5 years it gets to be a bit much.