What Caused Your Pots ? And What Else Came With It?

[Achilles2323]

did the doctors tell you what might have caused your POTS or what has caused your POTS ?

if so what were the diagnoses and what have you been diagnosed with after finding you had POTS ?

i am trying to find out how and why i got pots and have not got any clear answers as of today.

going to see a Rhumatologist tomorrow and a pots specialist in 2 weeks

i wanted to be prepared and what to ask and look for.

[lejones1]

My POTS came on after getting sick. I was told basically the virus got into my nervous system/brain and messed up something up...I don't remember the scientific details! There's no history of dysautonomia or any POTS-related disorders in my family and I don't have a personal history of any symptoms that would've suggested POTS. Between that and the fact that my symptoms started suddenly during a viral infection, I think the cause was pretty straightforward.

I've also been diagnosed with post-viral fatigue and still have swollen lymph nodes and elevated viral titres A couple of doctors contemplated diagnosing me with CFS but aside from the lymph nodes, all of my symptoms can be explained by POTS. They're really both just vague titles anyway. I was told I'm somewhat hyper-flexible but not enough to worry about EDS. Other than that...nothing. I was just diagnosed a few weeks ago though, so I don't have as much info as most people on here!

I think it really varies for everyone. Did your symptoms come on slowly or quickly? Do you have a family or personal history of anything related to POTS? Do you have symptoms that can't be explained by POTS? Those are all things you should consider and discuss with your doctors.

[Guest Alex]

I have no idea what started my POTS and unlike myself, my current dr seems to be 'happy' treating the symptoms - unsuccessfully though so far.

One unproven theory I have is that withdrawing from ativan/lorazepam did me in (just posted about it) but I have no real proof of that - just my personal speculations.

Truth is that, unfortunately, for most of us it takes months if not years of tests and many dr appointments to figure out the real cause of our POTS. Some of us may never find out, but with proper help from knowledgeable, helpful drs people see a reduction in symptoms and are able to enjoy life. Honestly, I wouldn't be so stuck on finding the reason for my POTS if my current treatment were helping, but I'm nowhere near that.

A rheumy might be looking for autoimmune diseases ( rheumatoid arthritis, lupus, scleroderma, connective tissue diseases, sjorgen's and such) - and yes, some people find those as being the underlying reason for their POTS.

The POTS specialist may be able to look at your history and suggest a certain course of treatment for you, but you have to realize that it's not a one size fits all type of syndrome you're dealing with and it might take some trial and error before you find the right med or med combo for you.

Keep us posted about your appointments.

Best of luck,

Alex

[bebe127]

My POTS seems to have come out of nowhere. It began with me noticing my heartrate was higher than usual while doing minimal activity, like making the bed or letting the dogs out. Went to a cardiologist. and she told me I had high blood pressure, put me on meds., but never said anything about POTS or suggested Holter monitor or anything. I even had a treadmill stress test that came back with flying colors. A week later, I had a panic-type attack (EMT said, severe anxiety) and the next morning found myself in the ER and had a short hospital stay where I met an EP. He did a tilt table a few months later and dx. me with "what is probably POTS". He couldn't tell me how I got it or why and couldn't/wouldn't even treat me. He said it is a rare disorder and and he didn't know of any dr.s that treat it. Told me to "eat more salt, drink more water, and go live a normal life." That was back in 2009 and my life since has been anything but normal. Still on the search for a dr. that can help me. I didn't even know there were different types until I began researching on my own. I've been to a cardiologist, 2 EP's, and a neuro to no avail. My GP treats me now, but even he never told me there are types and/or which I have. No dr. has even taken my bp while lying down, sitting up and standing. I am thinking about trying a new EP in the spring that supposedly knows about dysautonomia. On a positive note, I can go into see him prepared with bunches of questions. I just hope he can answer at least some of them.

[micheller]

Mine started when I was pregnant. After several doctors, I was diagnosed with GERD. Three failed surgeries later I was diagnosed with pots.

[spinner]

I had a horrific break up that nearly destroyed me and im guessing ruined my immune system and hormonal system.

Along the same time i had a tooth pulled and was on heavy duty antibiotics for quite a while which may have

ruined my gut flora.

Beyond that iim not positive.

[YolaInBlue]

I'm still looking for the cause. I started having "episodes" a few days after dental surgery, last year, but I don't know if that caused it or just contributed to it. Within a month I was having them daily and I could hardly get out of bed. I had two mild "episodes" before that. First one, flying from Europe 4 years ago, I started feeling dizzy, my heart racing. That lasted for about 5 minutes and made me nervous, however I got on the connecting flight and had no further symptoms. Then 2 years ago I almost fainted while driving, but I got enough warning to get off the road, lie down and elevate my legs. It was a very hot summer day here in Florida, my

car was parked outside, I thought that was the cause.

My family doctor thinks that looking for the cause is a waste of time, I should rather look for medications that help me. I don't think that's a right approach, so I keep on searching.

[jpjd59]

My daughter's symptoms started 2 weeks after a viral illness. The doctors say that the virus (1) damaged her immune system and/or (2) is still smoldering somewhere in her body.

[lfreem02]

I was told that my Dysautonomia is hereditary. My body produces too much adrenaline in response to any activity. From what I have read, hyperadrenic Dysautonomia is genetic, and can either stay dormant for a person's entire life, or pop up in response to trauma, viruses, etc. I can look back over my life and attribute different issues with autonomic nervous system causes. I had a summer of dizzy spells when I was around 10 yrs old. I have always been sensitive to heat. I was in a car accident when I was 19 yrs old, and started having gastro issues. I have been a vegetarian for 16 yrs because I have issues with digesting meat.

[badhbt]

I am not sure what set mine off. I was doing some pretty intense exercising and dieting before I started having symptoms. My first symptom was blurry vision for a couple of weeks, then all the other symptoms hit.

[Kris4444]

I think all of my stuff started with an EBV infection (titers 2,850). I still wonder if a lot of what I'm going through is caused by all the different medications that I've been on for the autoimmune stuff. Even now my medications don't make sense and I don't understand how taking and SNRI and taking clonidine even makes sense as you would think they would cancel each other out? Idk.

Definately EBV started it all.

[looneymom]

MAYO says my son's started because of a virus during a growth spurt. My son is tall for his age. I started a blog a year ago to tell our story on survivingpots.com. Might be some useful information to ask your doctor about. Glad you are getting to see a pots doctor. Hopefully you will have some answers soon.

[Mytwogirlsrox]

Pregnancy? Cessation of breast feeding? Caesarian section? Pre-eclampsia? Traumatic emotional experience? Stress?

Who knows?

I've never had a Dr look into it..

But, it came with anxiety attacks, eye floaters, and weird visual stuff

[jenniferlynne76]

We don't know for sure, but my electrocardio physiologist and neurologist believe it was caused by a virus. I developed a salivary gland infection (very weird!) Labor Day weekend and a week later had horrible stomach problems. A week later, I was sent for a gastro consult and that day wound up in the ER with high blood pressure and tachycardia...then all the other symptoms started showing up: insomnia, neuropathy, odd aches and pains, adrenaline rushes, etc. I had an endoscopy which came back clean, an electrocardiogram and several EKGs that came back clean, tons of blood tests via a rheumatologist--also all clean. An MRI that came back clean. Finally saw a neurologist and was diagnosed. Never any symptoms prior to the onset of this virus. So while we will never know for sure what caused this, I think that virus is a pretty safe bet.

[Mydoggielovesme2]

I have no idea. Was fine one day, and in ER the next. I was, dealing with a very crazy work schedule, and a lot of other stresses at the time though. Going to Mayo- Az the end of March, and hoping for more answers then.

[Altruism]

Started in late pregnancy and got severe after a very traumatic childbirth.

[Aimes]

I've had it as long as I can remember. Sometimes, it fades and I barely remember I have it. Currently, I'm experiencing the worst flare I've ever had. I had a baby the end of September and then had my gallbladder removed December 3rd. My body did not like it!

[ramakentesh]

Since the actual causes of POTS in most cases is still being researched and so far there are theories with some evidence but many blanks that need to be filled its hard to say in most cases what is going on.

For me POTS literally came out of the blue although looking back something wasnt right for a few years before its arrival. But I literally remember the day when bang I was just dizzy and my heart was racing. I developed an autoimmune disease within months of POTS and obviously these were connected. How is still unclear.

[ramakentesh]

if your curious for some clues there are some tests that may be helpful:

QSART test might indicate neuropathy

blood volume/low aldosterone/high angiotensin II might indicate Low Flow or hypovolumic POTS.

[tigerbomb]

Not sure. I developed POTS over the course of about 6-8 weeks last fall. Initially, I just noticed an increase in nausea, reflux, and fatigue, then increasing dizziness and anxiety.

I know that EDS is associated with dysautonomia, but my previous symptoms were just GI and alcohol intolerance. So, I feel like something must have changed to make my heart get in on the fun. I have some markers of autoimmune disease, but nothing definitive. I also wonder if spending a year with under-treated chronic pain could have contributed to a hyperadrenergic state...

[Angela]

i had weird blacking out episodes/seeing stars since over 10 yrs ago, developed a weird rash on my torso and forhead and the sensation that i forgot how to breathe... i had a generic bloodworkup done at the time but no answers, and it was all gone in a little over a month if I recall correctly. Summer 2010 had some gi issues and severe pain in my side at the same time, that lasted around 3 months, almost went in and got tested for why that was but it mysteriously went away. in early spring 2011 i did the hcg diet so I could lose weight (had my son in late 2009 and bf was injured via work, and couldn't help out much at all for a year) plus with a newborn and working a fulltime job I was not eating healthy and no time to do my yoga. I lost the 20 lbs I wanted to and was back to pre-baby weight however when doing the diet I started developing crazy symptoms, brain fog, rash on the top of my hands and feet, trouble forming words, abnormal brain waive slowing I suspect although didn't test at that time, and couldn't control my muscles properly, couldn't make a fist with my left (strongest hand) and tachycardia, gait issues, anxiety type feeling, plus blood sugar slightly high. I also had weird feeling in my head of a band of pressure going around my head and temples. That was when I had my 1st doc visit in years and suspected an electrolite issue due to the diet but tests came back ok. they referred me to my first neuro who naturally wanted to rule out parkinsons, ms, HIV, and other related possibilities of my symptoms. did a bunch of blood work and nothing showed anything and after 3 months I started feeling better so I forgot about it and started living life again. when I bought my first house in late fall 2011 (they say buying a home is the most stressful thing one can do, really?) POTS took the worst and longest flare, had another mri done, same neuro thought I perhaps sufferred from silent migraines or panic disorder, last resort simple complex siezure, around the time I was prescribed klonopin for my tremors and severe adrenal issues. Then my eeg with hr holter showed abnormal, for precaution sake I was put on keppra for possible siezures (now I am off) but that is when I discovered my hr was much higher in day then night during sleep, it was basically normal. referred to cardio, who did 2 wk hr holter, figured out hr only went up in day, got a 3read hr bp monitor and figured out what my body was doing laying/standing. To this day, I still have POTS via vitals and symptoms but much less severe than this time last year. I am only on klonopin and h1's and h2's and I take COQ10.

so, long story short (ha ha) no idea what caused my POTS. it seems to be getting worse with every flare tho.

[ramakentesh]

it seems to be getting worse with every flare tho.

ive tried not to admit it but this seems to be the case for me as well.

[Hoshistorm]

Severe depression and PTSD (same time as repressed memories surfaced) are what caused my POTS. My Rx is: PTSD, Major Depression, and POTS (Tachycardia with syncope spells). My blood volume tends to get really low quite often.