Cause of Pots

[Notgivinup]

Bumping this up.

My symptoms started exactly two yrs. after pregnancy. I had a bad pregnancy but no POTS symptoms. Then I had a 24 hr. virus, and a minor car accident in which I wasn't hurt but very traumatized. ( A semi hit me while I was at a stop sign, my almost two yr. old was in the car). It was only a couple months after that my symptoms began.

I am also light skinned, green eyes.

[Christy_D]

I can't pick any of those for my son. His was not a sudden onset of symptoms, but a gradual increase in symptoms. He started off when he was in the 5th grade with frequent stomach aches. He missed 20 days of school in 5th and 6th grade, 30 days in 7th grade. The first half of 8th grade missed 30+ days before becoming sick on a daily basis and has not returned to school since (1 1/2 years).

His symptoms added one at time also. First the stomach issues for 2 years before migraines started. Then dizziness and all the other symptoms(2 many too list).

They believe it is hereditary as I have some symptoms, as does my daughter. But they don't interfere in our daily lives like it does my son.

Christy

[sandymbme]

I had syncopal episodes as a teenager, almost twenty years ago. We did a quarter of aerobics in gym and I would drop like a stone five minutes into the routine. But no one could explain it at the time, and by the time i would be transported to the ER my symptoms had always abated. So mine doc at the time just wrote a note excusing me from gym that quarter and that was the last problem I had for years.

However, 8/12/07 (I remember the exact date because it was my birthday, lucky me!) I woke with a migraine that lasted nearly 9 months and after much fruitless searching and near endless doctor visits I was finally dx'ed with POTS at the Cleveland Clinic. My health has slowly deteriorated ever since....

Sandy

[potsgirl]

I got very sick with a viral infection, which affected my heart - dilated cardiomyopathy, CHF and bradycardia treated with a pacemaker. 3 years ago...

[Mary P]

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

When I was diagnosed with Parkinsons, I attended a wonderful support group. The caregivers met separately for a while and found this most worthwhile. Perhaps it could be arranged that all the caregivers on this forum find a way to share concerns, etc. As it turned out, I didn't have Parkinsons but loved the group.

All the best.

Mary P

[Mary P]

I am fair skinned. I fainted even as a young child, probably 8-9 yrs old. I have a form of spina bifida, the kind that allows me to still walk. I have always lacked 'normal' physical balance and couldn't dance without getting quite dizzy. My dad had problems similar to mine and he also suffered a couple of nervous breakdowns. A lot of my sibs have low blood pressure but not the other problems I have. I grew up on a farm and breathed in a lot of harmful, perhaps carcinogenic chemicals....but didn't know it at the time.

I don't think there is any 1,2,3 etc. things that point directly to the cause of our problems. The 4th N I saw in Feb. 2010 said. "You are a puzzle". Perhaps POTS and PUZZLE are synonymous.

Mary P

[sugartwin]

Well, first off I have EDS and the association between dysautonomia and EDS is well established. I wonder if some of the people who have flexible joints but no EDS diagnosis are people with EDS who are undiagnosed. Joint mobility starts to lessen as time wears on.

My dysautonomia symptoms started as a child. I've always had poor exercise tolerance. My classmates' pulses would be 75 and mine would be 88. It was blamed on my being out of shape, even though I wasn't. But I could never run laps in gym. I'd do two laps and be exhausted, unable to run farther. As I took up running as a hobby in junior high, I always wondered why I couldn't never run farther than 1000 meters, no matter how hard I tried. I pushed myself hard one day and ended up collapsing. After that I concluded that I just simply couldn't run distance for some reason. I always knew, however, that that was something about me that wasn't normal. Other people could, for some reason I couldn't.

After a bad virus when I was 27, my POTS symptoms started. I knew something was wrong right away, that I was physically ill with something. I didn't make the connection between how I felt as a child and how I felt after my virus for several months. When my sister tried to help me up one day, she partially dislocated both my shoulders. I thought to myself afterward, 'That hasn't happened to me since I was a kid.' When I underwent surgery, the nurse asked me if anyone in my family had negative effects from anesthesia. By then I had been formally diagnosed with POTS. I remembered that my grandmother's heart always stopped when she went under anesthesia. The nurse asked me why and I said slowly, "She probably had the same thing as me."

That's when I realized the whole mess was related. It was all related, it was all hereditary. I had the same thing that my grandmother had, which was EDS.

I don't have fair skin. I'm black. And as black people's skin tone goes, mine is medium.

[Troy]

I'm to blame for developing my POTS, going to rave parties for 5 years and taking ectsacy, amphetamines and lsd almost every weekend so I could dance up to 8 hours eventually resulted in a drug overdose one day, I ended up with severe hyperthermia, brain and autonomic damage and hospitalisation, lucky to have survived the overdose incidence I found myself suddenly with POTS and Autonomic Neuropathy. 10 years on and no improvement and I still feel guilty for having ruined my own life with such risks and total disregard for my wellbeing.

[Birdlady]

For me I got POTS before the illness and trauma, which doesn't make sense at all.

My timeline is like this:

Summer 2000--Severe Heat intolerance during summer band camp

fall 2000---diagnosed with EBV

fall 2000---became anorexic

To this day I cannot figure this out at all..WHY did it happen in THAT order. At least I could make sense of it if it happened after I stopped eating or after I got EBV. Sigh!

[noodlemaster]

This is probably contentious but I have recently come to the conclusion that my PoTS is most likely to be the result of chronic undiagnosed anxiety, with joint hypermobility as a predisposing factor. I don't see another explanation of my autonomic nervous system having a measurable problem with its function and no measurable problem with its structure. I think it has been stressed frequently and as a result has become (semi) permanently distorted. It cannot be reversed in the short term by relieving anxiety, only in the long term. It doesn't mean I'm making symptoms up and it doesn't mean I can just think myself better - in the short term. What can be done is to address the chronic anxiety as best as possible, which is what I'm currently investigating. This could then reverse PoTS, I believe, along with possible medication and other lifestyle changes to help the PoTS itself. I've reached this conclusion myself.

[ramakentesh]

ive wondered this as well noodlemaster - i can tend to get a relapse after high stress and was pushing myself too hard when i first came down with POTS.

[noodlemaster]

It took me a little while to accept because I was so used to "fighting my corner" when seeing doctors before diagnosis that it wasn't anxiety - directly - because I experienced symptoms all the time and I did not have panic attacks. And I had a silly misconception that psychosomatism meant that you were consciously making yourself ill and being over sensitive. I'd been reading a lot about different lab measurements of PoTS people - the chemistry and other objective stuff, and I think I just assumed that this meant it was a problem with the structure of the body.

I am glad that I have been diagnosed with PoTS and that I fought for it, but coming to terms with what I believe is an emotional cause has made me more positive and determined to get better. My cure - partial or complete - might not be quick and might have setbacks, but it's already started.

[Tammy]

Yes, I was taking Synthroid before this all started. I really hope that Synthroid wasn't the cause of all these issues!

[It'sMyLife]

This condition of the tongue is called migratory glossitis (aka geographic tongue). My husband has it and does not have dysautonomia. Just some info for what it's worth.

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?

[jenwic]

I was carrying around an undiagnosed gangreene abcessed appendix for about 6 months before they discovered what was going on. I was in and out of the hospital several times and given IV antibiotics for my "female infection" which didn't exist. After several months of carrying around the bad appendix, I got a bad cold and was given antibiotics and cough med with codeine. That night, out of the blue, my heart started racing and going crazy. I went to the ER but they couldn't find anything wrong with my heart and sent me home. Later, after my appendectomy, I thought I would be back to normal but I wasn't.

[TaraMc9]

My POTS symptoms started after I was kicked in the head by one of my students. (I'm a Special Ed teacher) She kicked me right between the eyes. I first passed out a week to the day after I got kicked.

[stacdliw]

My "Road to Pots" has been a long one. I believe it all started the day before Thanksgiving 1994 (yes, I remember the exact date) when I fell ill with a debilitating flu that eventually was diagnosed as Chronic Fatigue Syndrome and fibromyalgia. Then May 30,2003(I remember the exact date again), I awoke with horrible nausea and eighteen months later was diagnosed with idiopathic gastroparesis. Following a bout of obstipated constipation, I was diagnosed with autonomic neuropathy in February of 2008.

In March of 2009, I began having extreme breathlessness whenever I walked a short distance. Cardiac and pulmonary tests were normal. Finally, my GI referred me to Vanderbilt in July of 2010 and I officially was diagnosed with POTS in September 2010. The neurologist has diagnosed my conditioned as idiopathic autonomic neuropathy and believes my first symptom of this disorder was the Chronic Fatigue Syndrome and the disorder has progressed from there. She feels that for my POTS, as well as for my CFS and gastroparesis, the disorder will never completely disappear, but it won't become more severe either. Instead, the symptoms will wax and wane and with time, the severity of the symptoms should decrease.

So, I guess my POTS started from an illness. Who knows? Only thing I know is that I have it and it has changed my life forever!

Oh, I'm of medium complexion, hazel eyes, Scottish/English heritage and no one in my family has had similiar symptoms.

Bev

[masumeh]

i voted "illness". i had mono at age 20 and developed POTS suddenly during those weeks...the mono went away but the POTS stayed, undiagnosed for 4.5 years. when it finally got diagnosed, the doctor told me that my probable cause was the mono infection, Epstien Barr Virus, attacking my Autonomic Nervous System.

[ramakentesh]

None of those factors cause POTS. They may be a stressor that perhaps alters epigenetic mechanisms, innate immune system function or hemodynamics.

[Maiysa]

I started fainting at age 9 after a difficult stomach infection that kept me in the hospital for a few weeks or less. I was misdiagnosed with petite epilepsy. I started having what they called hypostolic shock, in my 20's. Basically my blood pressure dropped too low, causing my body to go into shock. But it only happened every few years with an occasional grand mal seizure; fortunately it never stopped me from doing anything. But developed a hyper form of POTS in late 2006 after a fungal infection in my lung, which later turned into autonomic neuropathy and now some mast cell issues. Just found out I have hypermobility joint syndrome also. But POTS has subsided, but still have orthostatic intolerance.

I'm a member of a native american tribe in the midwest and this is my dominant gene and along with French, 1/4 Swede and lil Irish, Scottish and tiny bit of Jewish. I'm basically a mutt with olive skin tone. I have researched and can't find any genetic correlation so far with any particular race with these disorders.

[Hoshistorm]

I am not sure which one to select either. I have had symptoms as far back as I can remember, but also have experienced trauma as far back as I can remember. That I know of, no one in my family has any symptoms. About a year and a half before I was diagnosed I went through a major ordeal; repressed memories of trauma had surfaced. My doctor thinks that is what made it flare up.

So, for me it is both previous history with no family history and trauma.

[spinner]

3 things happened in a short period:

Extreme emotional event lasting up to 1 year completely depleted all serotonin and probably wiped out my adrenals.

Dental problem, overused antibiotics.

Undiagnosed sleep apnea interrupted my central nervous system and may have damaged my hypothalmus.

[joyagh]

i would have chosen pregnancy, hypertension if there had been a choice. I started out with very low BP which skyrocketed after a flu when I developed POTS. My POTS caused gestational hypertension and pre-eclampsia, tingling head, face, torso, tachycardia, dypsnea with any movement, sudden extreme edema, etc...

[LastUnicornLady]

There is definitely some amount of family history for me. My mother, grandmother, and at least two (possibly three) siblings have vasovagal syncope or NCS. I also have a genetic disorder called Ehler's-Danlos Syndrome, which frequently linked to POTS.

[TCP]

In my case:

EDS > EBV > ME/CFS > POTS + Erythromelalgia