Poll: What Stressor Happened In Your Life Prior To Your Pots ? (trauma Or Viral / Bacteria)

[ramakentesh]

Yeah i was pretty similar. Lost of people report mild symptoms before a sudden onset of acute symptoms. For me the 'stressor' was a long distance flight with a cold, then drinking a few too many beers with friends the next day on return, then heavy exercise.

[Katja]

I seem to have had some symptoms since late childhood - maybe due to the EDS (you seem to forget that many people here have POTS secondary to hypermobility issues, which can cause impairment in the vasculature, and not due to trauma or infection). when the symptoms really hit, about 3 years ago, it was shortly after I'd had some kind of upper respiratory infection, and the next day after I flew Boston-Stockholm (mind that I've flown across the Atlantic countless times, though - I'm guessing at that point it just happened to be the proverbial straw).

[potsgirl]

Hi Gary,

I moved to Arizona from the Midwest and within 4 months got very ill. They think I had valley fever, a virus. I have never been well since. Diagnosed with cardiomyopathy in 2006, and then POTS one year later. I still wonder if I might be better moving back...

Take care,

Jana

[mae]

Well I'll try to keep it short

#1 motion sickness as child (car riding)

#sexually abused and emotionally also as a child

#2 smoked pot and drink alot as a teen

Had heart palps tried kava kava for anxiety attacks....

#3 caught the REAL flu virus and tonsillitis keep fever for 2 week couldn't bring it down

#3 stopped smoking pot then started having what the docs DX as GAD generalized anxiety disorder (tremors with triggers ) like eating and other normal things

#4 had 1st child dizziness never left, B/P plummeted with epidural 50/30 almost died and think I went into heart failure postpartum could no longer stand extreme heat

#5 Serious emotional trauma was sexually assaulted

#6 had 2nd child more Anxiety like symptoms

#7 physically abused

#8 Got divorced he took my children

#9 Had 3rd child Hemorrhaged after delivery

#10 Felt better than after 1st 2 children still had symptoms when I ate like a rush or hypoglycemic feeling

#11 Got pregnant again in all pregnancies had weird symptoms I'd have migraines with aura's and numbness in hands and arms EVERY PREGNANCY

#12 after baby was 6 months had recurring chest pains weakness dizziness all along and started blood pooling in feet

#13 Last baby #5 Extreme dizziness right after delivery they send me home anyway was very fatigue thought it was just waking up every 2 hours , but it wasn't I became very ill starting my normal menses cycle after that delivery and it seemed like my heart was slower and shutting down, had the yard sale on the warm sunny day and had shortness of breath ,paleness, heart palps, tingling and went to the ER and another and another I finally demanded a ECHO and found my EF was 45% the cardio said my heart was weak and scheduled a stress test by that time 3 weeks later my EF was 70% he said I recovered. But my symptoms never left they called in postpartum cardiomyopathy and said never to have any more children and I asked him why are my legs and feet purple when I stand???? he said he didn't know and I was recovered its not my heart , so my journey began I went to many many doctors telling all these symptoms and they said its depression or that just didn't know what it could be. I have many possibilities of what could have caused it but by looking at my list it could pertain to so much .

It could be genetic

It could be toxins

It could be blood loss

it could be extreme stress though out life

It could have been viral since they don't really know the cause of postpartum cardiomyopathy with they think its bacterial or viral

Maybe it was a mixture who knows . My body has been through so much in every way symptoms began before any pregnancy but it seemed every pregnancy just exasperated more symptoms and the last one did me in.

Mae ***** this probally just makes you more confused

[Lizzegrl]

Good information Ram. My case is indeed unique. I actually have had POTS symptoms for as long as I can really remember. It got worse when puberty hit, but it has been a life-long challenge. I've had syncope with loc, severe tachycardia, various arrythmias, blood pressure inconsistency, severe fatigue, exercise intolerance, etc. for years.

[ramakentesh]

Thanks for the reply. Is there anything in particular that you have experienced symptom-wise that might make your type of POTs stand out? As in specific or out of the ordinary? the reason I ask is that cause was suspected in myself.

[BelieverEM]

I realized last week that my onset of symptoms was at the same time that I started giving blood (2nd year of college).

[pearsjon]

born w/ it.

always car sick- pain sensitivity was high as child- hyperactive child very rarely slept-parents called me center of attention-sexual abuse-emotional abuse-beaten by 1st boyfriend-pregnant at 16-beaten severely by 1st husband-2cd child at 18-developed cervical cancer during that pregnancy- cervical laser surgery after birth of 2cd child- anesthiia (sp) almost killed me for that surgery- both children natural child birth no drugs of any sort-emotionally and physicallly abused by 2cnd huband-also found out after divorce he abused my children sexually and emotionaly (put him in jail for that)-when told parents of sex abuse at home was kicked out and not believed-several car accidents as child-2 as adult-total loss of everything twice, once from fire, once from hurricane-always had gi probs-no anxiety till later in life- sang all the time for contests and church-3rd child epidural

i could go on and on with traumas and stressors that happened in my life, but the only prob i have w/ that line of thinking is- if caused by that, then how come i always managed to pick up the pieces all by myself and do the right thing for me and my children? noone counseled me after any of these traumas/stresssors. i did it

i waited 10 yrs to put that SOB in prison for what he did to my children. i am the one who learned to cope after being thrown out because my step brother molested me. i am the one who dealt w/ the beatings from said ex's.

i have always been independent.

this was a for sure low blood volume issue for me that i was probably born w/. and my dys doc agrees.

i want to ask how many have OI,POTS and NCS? this would lead me to believe that a definite dysfunction. besides the fact that my sis,dad, son,daughter,and cousin all show signs of dys, but none has been dx but me.

[gwensvilla]

my daughter had a few sporadic faints during exam times mainly,then we flew to the usa via germany..she passed out in germany and again in florida and then just started fainting every day sometimes several times per day, until she was hospitalised and reached the point where she couldnt sit above a 30 degree angle...she has since been diagnosed pots in the usa and then was seen by a UK expert and diagnosed as pots and eds...Gwen

[pearsjon]

i forgot about being held at gunpoint and my ex raping me.

my point i was trying to make before i was interupted was that if trauma/stressors were the only cause or one of the causes of dysautonomia, there are a ton of people out there that have had far worse trauma/stressors than any of us could even imagine. why don't they have dys?

which leads me back to the conclusion that with have something w/i us that has makes us suseptible to this crap. we will more than likely find out ( well our kids will) that it is more likely something that we always had and just progressively gotten worse or better (in some cases). or that aging has something to do with when we feel this stuff.

and children having this makes that point even more of a reality to me.

just my 2 cents.

[Lizzegrl]

Ram, I was treated for cardiac arrythmias and severe cardiac symptoms since puberty. It wasn't until I was very very ill and an open-minded cardiologist in the early 80s believed that it wasn't caused by panic attacks. I was experiencing such severe blood pressure drops along with such high pulse rates that he started treating symptoms so that I didn't actually die. My echos were so bad that he was afraid I might not come around one day when I fainted, or my heart would actually give out!

I also have a strong documented family history of cardiac arythmias, syncopes, and symptoms that could well be POTS. Unfortunately, the other family members have all died, so they can't really do serious testing to prove it, but pretty much every doc I've seen feels that there is a genetic root cause issue that could be traced through the past 3 generations if they were alive. One of the things that they discussed when diagnosing me was that my issues began very young. They also did a very complete H&P including discussing my health history as a child from birth onward, with my mom. I was actually very ill from birth. ICU at 2 weeks.

One thing I have noted is that my heart rate seems to be much higher at all times than even others with POTS. I run over 100 at almost every moment. If I have a resting rate (laying) below 100 it is almost shocking. The cardiac issues have been the one area that has been the worst in my case. I've been cardioverted from WPW, in the past. I was ablated for it and have had some arrythmia issues since, but nothing ablatable.

One note: as I've aged, my blood pressure has migrated toward being high rather than bouncing up and down. It could have been exacerbated by other health issues like severe asthma which has gotten far worse with age, and the increasing need for high dose steroids for extended periods of time, but they have factored that in and don't feel it is the root cause.

[TopHatKat]

I was perfectly healthy and active up until I got pneumonia my senior year of high school, 4 years ago. I was in bed for 23 days with pneumonia, and while many of my symptoms got better, I never fully recovered. When I came down with pneumonia, I was perfectly health one day and literally couldn't get out of bed the next.

When I was diagnosed with POTS syndrome, the time line seems to point to my getting so sick 4 years ago.

[ana13sanchez]

Mine appeared 2 months after my son was born, I had a cesarean surgery, it was programmed but by the time I had the surgery, it seems like he was turning blue because the time for him to born was ending! so doctor was cleaning (like cleaning a table) inside of me as my baby was already defecated.... so.... my son was born with lactic intolerance, severe reflux and because of this he couldn't sleep well and was crying all the time.... I had a terrible time or what I consider the worst time of my life.... after all this suddenly I had a vasovagal syncope while I was sleeping, I woke up with nausea, had to go to vomit, sweating, tachycardia, dizzyness, diarrea) and I have been sick for 6 years, and symptoms are just growing and growing.....

[bjt22]

A little late to the game, but interesting train of thought, nonetheless.

I've always had some symptoms. I'm sure that I'm one of those who was literally born with some irregularities. They became more noticeable during my next-to-last pregnancy. I had bronchitis when I was about 16 weeks, and it took forever to shake. After it started to recede, I developed migraine/cluster headaches. No one paid much attention to this, as I was pregnant and it was assumed to be just a pregnancy related thing. However, I noticed that these headaches were set off by changes in blood pressure. They occurred at rest...when my blood pressure dropped and was at it's lowest. They also kept up for awhile after the pregnancy. Nearly a year, if I remember correctly.

They did resolve, and a little later, I became pregnant again. No headaches or unusual symptoms at first, but further along into the pregnancy, it was noted that my blood pressure was extremely labile and I had what was termed "pregnancy induced tachycardia". I felt all right, though, until about a month before I delivered. Everyone in my family, including me, caught some kind of weird flu virus. It was really going around at the time and was considered quite a mystery. It wasn't the "flu" of the season...but it was quite nasty. From the time I had this, I was never quite right again. Within two days of delivery, I passed out. These incidences increased and I kept feeling worse until I was bedridden by about six weeks post-partum.

Luckily, I was very quickly diagnosed. After awhile, I was successfully treated. I did quite well for about three years. At that point, symptoms were again increasing. I caught a cold, and literally, almost overnight, it was all full blown again. That was nearly 10 years ago.

So, yes....there were "stresses" on my body that brought this out into it's full blown state. I think it was a combination of stresses and I still believe there might be some kind of immune system thing going on with it.

[erik]

I'm late to the show, but this topic seems well worth appending to. Keep in mind POTS is not a disease, but a set of symptoms with several ways to get to it.

Short answer, early precipitant for me was most likely an MTBI in adolescence. A full syncope and "fatigue wall" followed this by 6+ months and then repeated periodically. This is a "mild addisons" looking thing, including susceptibility to stress. My personal suspects are overt HPA damage or mysterious dysfunction in central trunk (I am also 1 quarter-elephant, on my mom's side). I've only had an MRI for an unrelated body impact (collapsed lung, broken ribs) but if you cut the check you can scan me as you see fit... I love the smell of radio-isotope tracer in the morning

After that, had some "set-backs" and went through years of having CFS-like suspicions and bouts of seizure or pseudo-seizure (still on rare occasion)... but knew better than to raise the issues ("all-in-your-head" phobia... since I'm sure some of it is). Then had body injury (remote chance that adrenals or other were aggravated, who knows)... recovered, but had "weird stuff" start creeping in to the picture. Eventually the "mysterious flu-like thing that snowballed" scenario happened to me too! Broke down and saw doc when it wouldn't go away and others took notice. Took predisone/claritin-D/antibiotic as directed which culminated in feeling way better, then having a full blown panic attack (first ever) and got to hear some docs say "you're just dehydrated & anxiety prone".

For couple years some other panic-like things of various "flavors" recurred but diminishing over time (no treatment, I'm a "lone sufferer" type). Then another mysterious illness thing, but nurse had trouble measuring vitals on separate occasions, even double-checking her equipment! I joked that perhaps I was dead and didn't know it. That was how I felt. Requested doxycycline and took it for a month (for my own non-POTS theory at the time... hadn't heard of POTS yet). No dramatic or permanent effect, but thing went away for a bit as it usually does.

In the months after that, I purchased a few gadgets, read a few thousand web pages & articles, worked with primary care doc patiently and often, and am now joining the POTS club on probationary status... with cardio & TTT likely to confirm shortly (but perhaps my diagnostic fate will be an odd panhypopituitarism or who knows what, we shall see). Non-productive exertional asthma-like stuff jumped in to the picture suddenly too... plus an unexplained hemoptysis (perhaps one day to be related, perhaps anomalies).

You can sprinkle in a sexual abuse as a child and some key emotional traumas later, for good measure and to thoroughly confuse the matter. What I now suspect to be "dissociative" symptoms followed that situation... but the syncope and fatigue pattern was later, shortly after physical (non abuse) injury. Head injury brings it's own happy-family of potential symptoms too... so the full picture is murky (ironic). I have an odd blend of ability and deficit hat doesn't quite balance out. I choose a "detached" front and approach to this stuff, particularly on the surface... but others, especially those that have extra trauma and loss as part of their history, have my sincere sympathy.

[kayjay]

I think mine started with exposure to black mold during my first pregnacy. I developed allergies and had high blood pressure with the first pregnancy. I had PB problems after her birth then low blood pressure during the birth of my second child. I was really never sick before I was pregnant. I had chicken pox in 1st grade and mono in college ( made full recovery) but was healthy otherwise. My maternal grandmother died in her 40's and her children remember her being short of breath for no reason. I think she had the same problem.

[Kyler]

My 12 yr old son has had symptoms that we didn't know were symptoms since he was 7 yrs. old - he started with red sore legs after showers and what we called motion headaches-severe head pain with positional change only,heat and exercise intolerance.

No major illness or trauma of any kind in his life-the occasional stomach bug or cold but not in relation to onset of symptoms.

Symptoms got much worse this May after a major growth spurt (4 inches in 4 months) and 6 months of concerta for what we thought was ADHD - turned out to be cognitive manifestations of POTS.

First major symptom in may was HR of 220 w/ blurry vision and dizziness and it has progressed from there.

Seems to be no other family history except that I have some symptoms that I didn't recognize until I learned about this-I am pregnant right now but plan to get tested after the baby comes.

He has Hyperadrenergic POTS and no other apparent causes like EDS or anything.

[Brye]

My onset was about 2 weeks post partum with baby #4. It started with N/V and fever though so it could have been a viral cause as well. I was diagnosed with a kidney infection at that time. I tested positive for Epstien Barr virus about 5 months after so that makes me wonder if maybe that was the cause. I guess I'll never know!

Brye

[ramakentesh]

Where you taking any medications prior to the onset of hyperadrenergic POTS?

[jesse1919]

Nothing. I went to a party the day before - felt OK. Woke up the next day with POTS. No prior history or family history.

[mountain girl]

I changed jobs in March 2008 and had such anxiety that I went back to my old job, but had to work night shift because no other shift was open. I started night shift in June 2008 and that is when my symptoms started and became more severe by August. I stopped night shift and was put on days and evenings but of course the symptoms continued. I also had 3 sinus infections from Dec. to April, but I had them in the past, so I was inclined to think the "trauma" to my system was night shift and not sleeping well. My symptoms were tachycardia, anxiety and chest heaviness and of course extreme fatique.

[Jan]

When I got POTS, my marriage was a mess, and I had a lot of job stress. Then I got a "virus" they thought was the flu. I never recovered. I really was under the worst stress I have ever had in my life.

I always wondered if in years past they would have said I had a "nervous breakdown".

[anjuu]

^^ Same with the stress.

Started with worst emotional job stress, then thumb surgery, then more of the same job stress since I couldn't work for a month. Once I healed, I was walking to work and I became short of breath, light-headed, and dizzy. Within two weeks, it was a full blown assault of symptoms.