Cause of Pots

[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 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

[Guest Julia59]

I think I was born with it also, but I was also born with chiari/small posterior fossa/retroflex odontoid---aka ( tilted C1-causing further stenosis in upper spine/brain stem area), cervical spine stenosis.

Many people with those types of congenital birth defects suffer from one form of ANS dysfunction or another. I think as we age our symptoms can get worse depending on the treatment--i.e.---> surgery ect.

There are studies going on, but it's just starting. There also seems to be a connection to EDS. No one knows for sure yet----and my POTs could be totally separate, as my PCP thinks. I'm thinking there is a connection with my upper spine issues---but that is my opinion. The jury is still out as far as Dr. bolognese (NSG) or Dr. Grubb regarding the POTS/SPINE/CHIARI connection.

It does not seems to run in my family---the POTS anyway.

Julie :0)

[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.

[Nicole's Mom]

justme,

If you don't mind me asking- you said your wife had extensive testing for 3.5 years. I'm curious to know what kind of testing was it- I mean- was it all done at Mayo by Dr. Low for instance - or at another POTS facility?

Also please excuse me if I missed your description of your wife's present condition if you have posted it recently. But I am wondering how your wife is doing in general and how well does she handle what has been handed to her with this illness? Does she use any of the typical dyautonomia meds?

And about you. . . How are you doing? We "caregivers" don't have much of a chance to converse with one another on this forum but I thought I might take advantage of this post to ask you about yourself.

I wish you all the best.

Beverly

[Jillybeanbme]

I am so glad I found this web site!! So many things are finally making sense!! I too have fair skin, blonde hair with hazel/green eyes. Although I wasn't dx'd until I was 30, now that I know what the symptoms are I can remembering having them as far back as I can remember!! My Mom says when I was an infant I would never cry when I got shots. The nurse told her that was not normal and proceded to pinch me so hard that it left a bruise to make me cry. I have never been able to tolorate the heat. My first pregnancy was good, my second.. I threw up every morning. Some times it was nothing but bile. My Ob's excuse...maybe galstones..ultrsound was negative. I was short of breathe all the time and just couldn't seem to keep my balance. Family history? Unfortunatly my family members are not very good historians. My maternial grandmother did seem to have a lot of POTS symptoms, but she lived in a small country town where the doctors would probably look at you like your were crazy and would have NO CLUE what you were talking about if you even mentioned POTS or Dysautonomia. Her cause of death was congestive heart failure and for some reason that they just couldn't figure out ..her blood pressure was always dropping low..ummm. And she always had cold hands & feet.

[king_saladin]

The side of the family that I got this condition from is mostly western European and Scandinavian descent.

I have Chiari Malformation, which really flared up around 15 years old. The dysautonomia I think really became a problem around 17 years old.

[kristinp29]

I had bronchitis in September 2001 and my immune system attacked my nerves. I didn't experience dramatic symptoms until Jan. 2002 and wasn't diagnosed until August 2003. I'm sure a lot of you have experienced the whole doctor-tells-me-I'm-crazy thing. Ugh... annoying!

[Sunfish]

good idea but i too find it too hard to pick only one for the poll as my "causes". albeit they are all guesses to an extent, are multi-factoral....some predisposition always, illness, trauma....

too much fun, eh?

:-)me

[jesse1919]

My POTS happened overnight with no known illness or family connection. I'm light-skinned, blonde, blue eyes, male.

-Jesse

[wareagle]

Let's see..I chose "illness" b/c all of this hit me pretty hard all at once..I had a confirmed B12 deficiency and suspected EBV..I wasn't dx with POTS until 15 mths. after my accute onset. Looking back on my life however, I think I've always had some ANS issues..they just weren't severe enough for me to really acknowlege..like being tired a lot..some exercise intolerance..passed out after donating blood and then once after being in the heat..things like that. To my knowlege no one in my family has had anything similar to this...so maybe I'm just a fluke!

Oh..and I guess I'm pretty fair skined..although I tan easily..I have brown hair, green eyes but I don't bend easily!!

[Dizzy Dame]

I've heard that this is a "northern european"disease, but I don't know how accurate that is. I'm blonde, w/ blue eyes and pale skin.

My onset was sudden, so sudden in fact that the first time I had symptoms, I was convinced I was dying. I can't, for the life of me, think of an incident, accident, or illness that could have brought this on. One moment I was a healthy, active young woman, and within 24 hours of the first symptoms, I was disabled.

I still haven't gotten an answer as to WHAT is causing my symptoms. I don't know if it's autonomic or something else, although all of the tests they've done have come back normal. Aside from the hypo. and tachy. I'm as healthy as an ox.

[hopeful-girl]

Hello. Well IMO mine stemmed from an over dose from cocain May 1986. I started having symptoms after that. Prior to that I never had any problems. 6 months after that I remeber getting sick and I was told I had a heart mur mur. I was never told that before either! My symptoms were very epasodic for years. It gradually got worse threw the years and every doctor I seen kept telling me oh you have anxiety or depression or it is just in your head!! Well I tried 5 different anti depressants threw the years and all of them with in an hour of consumption put me in the ER with a heart rate above 200 and blood pressure low. So no AD's for me!

For so long before things got really bad and being diagnosed I would make comments to the doctors like I feel like my nervous system is hey wire and they all would look at me and say NO but I think your head is (giggle) Well they may not of always said that but ya can tell when they think that or hint to that!! I would like to face them now and see what they have to say LOL

But before then I never had any problems. I have been drug free since then too. Almost loosing my life to drugs was NOT the way I was going to keep going ;-).

[India]

Not sure when my POTS started. I do remember feeling faint as a child after standing for prolonged periods of time. I remember being on the brink of passing out several times but never quite did. It was not serious enough to warrant trips to the doctor, though. I also remember one distinct occasion in P.E. when we had to take our pulses and mine ran very high. The conclusion of the PE teacher was that I was not "fit." That seemed to be, even at the age of 11, an unlikely explanation as I was very fit as a kid and on every possible sports team you could imagine.

My health became much worse once I moved to the U.S. for grad school at age 21. The first doc I saw in this country accredited my fainting spells and rapid heart rate episodes to "hormonal changes common in women in their twenties"??? I do know that heat made it much worse and the humidity of Ohio, compared with the temperate nature of the U.K where I had grown up, may have made my episodes worse.

As a northern European, I too am very fair skinned with green eyes. I am brunette, however, (that's where the Welsh blood kicks in).

My legion of doctors seem less concerned about cause--most have said "we don't know and will never know"--and more concerned with treatment. This is probably because they are not "experts" (but then again, who besides us, is?) My neurologist had heard of POTS but said she had only ever met one case besides mine in the twenty years she has been practicing medicine. She did add, however, that symptoms in that patient got worse around about the same age as mine did and that maybe our etiologies were similar

I was a breach birth and had breathing difficulties for the first 24 hours of my life. Maybe this is a factor?

India