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Have You Found The -cause- Of Your Pots Or Dysautonomia?


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Hey guys,

I'm new here! It's lovely to find this place. I had been searching the internet for ages about "orthostatic intolerance" but when I discovered the key-words "Postural Orthostatic Tachycardia Syndrome" it led me to a wealth of information that has been helping me and my doctors tons.

I've had POTS since I was a little kid, but I was able to manage the symptoms for the most part until college. I couldn't handle it, so about 4 years ago I started getting serious and trying to get a diagnosis. Took me until this past december when I found my cardiologist and she diagnosed me with Orthostatic Hypotension with Tachycardia. It wasn't until I did research on the net that I figured out POTS might be a better diagnosis because I fit like 90% of the typical symptoms (including GI problems, vision, walking, balance, senses, bladder, basically my whole body). I brought it up to my doctor, she agreed with me, and now I am seeing a Neurologist to see if it's something that can be fixed. I'm on a bunch of medications including SSRI's and beta-blockers, and we're going to hold off on Florinef until we get the go from the Neurologist (my physician is nervous about this whole thing since she's never dealt with it before).

I'm getting a brain scan (MRI) in a week to rule out problems with my brain. I'm not really sure what she's looking for, but I'll do anything if it means figuring out a way to fix my issues. I realize POTS itself isn't curable, unless the cause of my POTS is something that IS.

I was wondering if any of you have worked with doctors to figure out the cause of your POTS or Dysautonomia? Have any of you known anyone who has had POTS and found a deficiency or defect that was reversible? Anyone know if it's impossible to find the cause of my POTS?

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I'm looking too. Many conditions can cause POTS-like symptoms. Right now, I am thinking that I have had POTS for most of my life (exercise intolerance, strange sweating, etc.) But it is the new symptoms that are throwing my doctors and me (tremor, hormonal changes and possible Diabetes Insipidus.) My concern is that I now have TWO problems and that the second has made the first (POTS) much worse. You can have endocrine issues (diabetes,) or cardiac issues (mitral valve prolapse,) or neurological issues (too many to mention,) that cause exactly the same symptoms or you can just have POTS (which is itself a neuro issue and bad enough on its own.) Good luck in your search, I feel like a dog chasing its tail sometimes. Get ready to do a lot of your own research, many docs will just think that you are a hypochondriac, or just don't know squat about it. Unfortunately, we are on the "cutting edge" of medicine here and not much is known for certain.

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Hi and welcome to the forum! Glad you've joined us.

As to the cause question, my doctors and I figured it was a result of autonomic nerve damage that occurred due to a mono infection at age 20. That's when I started fainting, being dizzy, fatigued, short of breath, etc. It was concurrent with the mono, but I think that the EBV (mono virus) affected me so badly because I was already down from stress and wieght loss (from taking INH earlier that year). Maybe I was also prone due to collegen issues, God knows. I think it's hard to figure out exactly why one person has mono at age 20 and is fine two weeks later, while another gets it at the same age and is damaged for life. THere has to be some difference underlying the two outcomes.

Good luck figuring your case out. It's good that you have the right medical support, and that your neuro is willing to go that distance with you.

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There are a few of us here (myself included) that have Ehlers Danlos type 3 (joint hypermobility). It isn't clear why the 2 conditions can go together, but there is a statistically significant trend for people with ED3 to have POTS as well. It's only a suggestion as there are lots of possible reasons for getting POTS, but is worth considering given how long you have been ill. Not that it changes the way POTS is treated, but it is nice to have some sort of explanation!

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I haven't worked with any doctors to discover the cause...But its something that I think about all the time. I basically started noticing symptoms almost 2 years ago, in the fall of 2006, out of the blue. It came on over a span of a few weeks. I was noticing that I was becoming more fatigued than usual in my dance classes, and going up flights of stairs was a huge challenge for me. It progressively got worse and became full-blown around November. From November-May of that year I struggled so badly every day. Standing up was a huge challenge, I never had a SINGLE good day. Since then, my life has been UP and DOWN, but I have made significant improvements overall. I worked my butt off trying to regain some normalcy in my life...So far so good...I still have horrible days where I'm basically bed-ridden, but on MOST days I'm holding my own and living a normal life, even exercising again.

I honestly don't know if I've had this my whole life (atleast had the capacity to develop POTS/Dyt) or if it is something that just developed due to an unknown cause. I never had a bad virus that most people have before they develop POTS out of the blue. I know I always have had Mitral Valve Prolapse, and there is a connection to MVP with dysautonomia. My best guess is that I've always had it in me to develop this...There are too many incidences in my childhood that fit...Maybe the added stress I was under right before I developed the symptoms may have been the 'straw that broke the camel's back.' I hope I find some answers some day too.

I think once we find out the CAUSE of this disease, it will be a lot easier to treat! I'm wishing you and everyone success with finding answers!!

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I've been thinking about this a lot lately. My husband really wants to know what the cause is, too, and it's hard to pinpoint.

Some people remember having weird things as a kid. I had asthma - worse than I do now - but that's such a common ailment for children. I wasn't an active child & was a chubby grade-schooler, but nothing jumps out as being really off. I played kickball and tag and stuff. I ran up and down stairs all through my childhood and teen years, in high school I did sports/activities, worked and went to school, etc.

In recent years I've worked and traveled and didn't notice anything really fatiguing. I'd get occasional migraines, but I think that was more hormone related (and they run in the family).

In February of 2007 I caught the worst flu I've ever had...I was at my desk feeling a bit down in the morning, and by noon I felt worse than I'd ever felt in my life. I had to grab a taxi home and on the way home I saw a guy get HIT BY A CAR and fly in the air and had to call 911, etc (talk about stress). So I was sick for days.

About 3-4 months after that mess of an illness, I started to notice weird symptoms (fast heart rate just walking around, tiredness, urinary issues) and my doctor did some tests but couldn't find anything. I 'ignored' things until January 2008 when I was finally diagnosed with POTS.

I have 'ok' days and 'crappy' days...but I've not been bedridden unless I get very ill (like the flu). I haven't got worse since last year, so I am told that's a good sign. I'm afraid of getting worse every day, but I keep telling myself the longer I go and don't get worse, the better.

In January 2007, before the flu, I did a huge trade show for work and was 'tired' but not anything unusual for the amount of work I put in, crazy flight delays, etc. If I'd had POTS then you'd think I'd have been completely overwhelmed/exhausted. So everything points to the flu in February 07.

I just wish there was a way to test for it, but there's not.

I wonder what's being researched - it'd be great if there was something that could help heal whatever was damaged (or find out what was damaged!).

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Guest tearose

There is so much they just don't know. I gave up trying to find my "first cause".

I had a bite, got sick, got lympedema and a few weeks later started having heart racing. Months later I had more strange symptoms. POTS type. However, I also studied abroad in college and came back with a parasite. I also sustained 2nd degree burns on my legs and hands. I had a hang gliding accident. Who knows if it was a combination of assaults to my body or not?

I have been getting worse over the years to where now I am unable to work. In me, it may be that I had a predisposition and the bite pushed me over the autoimmune edge so to speak. I just know that "they" don't have the answer yet and I must move on with living life without knowing.

There is so much research needed in this field!!!

I try to spend my time and energy on what to do with what i have left instead on what caused me to get here.

I am humbled to have been to Mayo Clinic three times to get excellent diagnosis. I know more about what I have and how to live with my limitations. I still struggle at times but I am getting better at learning how to accept now.

Okay, time for attempting sleep.

best regards,

tearose

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This is an interesting discussion. Maybe if lots of people responded we may see a common pattern. I have PAF, a bit different to POTS, but lots of similarities too.

I think there were one of two possible 'triggers' for my PAF, although I cannot be certain.

Firstly, I went on honeymoon to Turkey and whilst there had terrible tummy problems and we had to call the doctor out. On returning home I continued for the next 7 years to have a dreadful time with my tummy. The doctors thought it was Irritable Bowel Syndrome and prescribed accordingly. We then moved house and I registered with a new doctor who organized a stool sample analysis. It turns out I had been harbouring the giardia stomach bug for 7 years! A one week course of antibiotics cured me.

Secondly, I noticed the feeling of dizziness after eating, exercise and standing when I was halfway through my first pregnancy.

My thoughts are that either the 7 years of hosting a parasite, or the hormonal changes associated with pregnancy might have some bearing.

I'll be watching this site with interest, because the doctor I see in London, who is a world-renowned specialist in the field, admitted that he wasn't 100% sure of the cause/s either.

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Hi!

I think you will find that many people do not know what caused dysautonomia for them, and for many they may not ever get that answer. For the most part the people who do know it is because it was post virus, surgery, or pregnancy etc. Some people get some answers if they have had it for quite a while and also have another syndrome/condition that predisposes them to it (ie. EDS, Chiari etc...).

For myself, I have had some of these symptoms pretty much my whole life. They have continued to increase in severity and frequency. The first time the symptoms got worse was throughout high school, and then there was a plateau, and then in undergrad things slowly increased, then in grad school things have increased expenentially.

Even with a lot of testing, I have no answer for a cause. Because others in my family also have similar issues, it is likely genetic, but not sure what "it" is.

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My POTS was triggered by severe and prolonged anorexia nervosa that I had as a teenager and young adult. Evidently, secondary autonomic dysfunction is very common in people with eating disorders, but typically, when the person gets better, the dysaut resolves itself. In my case for whatever reason it didn't go away, even though I have been very healthy and at a normal weight for many years now. I know POTS can sometimes be triggered by dramatic weightloss, so it makes sense. I had no POTS symptoms at all as a kid.

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I have Chiari I (decompressed June 7, 2006), Cranial Cervical Instability, Tethered Cord Syndrome, all caused by SEVERE classic EDS... Even after I get the CCI and TCS surgicallly fixed I will still have Dysaut. Hopefully I will not be totally incapacitated by symptoms... Right now I sleep (live) on living room floor and am home bound due to symptoms. The goal of the surgeries will be to bring a functionality to my life not a cure.

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Both my wife and I have POTS. I swear! Now how strange is that!?

Her heart rate goes up 30 or 40 when standing as does mine. I'm a bit worse, and I have hypertension sometimes when standing.

The only medical conditions my wife and I have are hashimoto's thyroid disease and adrenal fatigue. It freaks doctors out that we both have identical problems.

We were both exposed to black toxic mold prior to all this.

Check this out:

http://forums.realthyroidhelp.com/viewtopi...?f=2&t=7320

Seems a lot of people who have thyroid disease or adrenal issues are having similar symptoms!

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Thanks for the great response! It's really interesting that so many things can cause pots---including eating disorders! Didn't know that. I had tons of stress growing up because I had an abusive father, but other than that, no weird viruses or great stress to my physical health.

My brother has similar symptoms to me but they don't debilitate him---he's in good shape, though low energy. My other brother has a heart murmur that ended up being where the valve draws in blood because of a quiver, but it hasn't caused him any problems.

It'd be interesting if it was genetic. It must be crazy expensive to test for that! Grats to Ernie for having the opportunity to test for that!

The downside for me to trying to find the cause is the medical expenses that keep piling up. I have a good insurance, but despite that, things still add up and I'm about 800 in the hole from diagnostic bills. I have no clue how much the MRI will cost. Right now my insurance is being stubborn about approving it, though the doctor says I shouldn't worry about it.

Thanks for the insight into your guys' unique cases. It helps a lot---and my doctors are always impressed about how much info I know surrounding this. Hopefully I can help them out even more ;p

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Yeah it's sad that in most cases, unless we go to a specialist, we have more knowledge than our docs concerning POTS or other forms of dysautnomia!! :o

Have any of you been tested for parasites? I've read that according to the center for disease control they are a major problem, even in the US and elsewhere. Some can enter your brain or heart and start chewing on brain neurons. Unfortunately tests for parasites do not normally detect brain parasites and only recognize a small percentage of known parasites, and could give false positive results. And docs are generally not concerned or even unaware of them, so they likely would go undetected.

Just a thought.

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Yeah it's sad that in most cases, unless we go to a specialist, we have more knowledge than our docs concerning POTS or other forms of dysautnomia!! :huh:

Have any of you been tested for parasites? I've read that according to the center for disease control they are a major problem, even in the US and elsewhere. Some can enter your brain or heart and start chewing on brain neurons. Unfortunately tests for parasites do not normally detect brain parasites and only recognize a small percentage of known parasites, and could give false positive results. And docs are generally not concerned or even unaware of them, so they likely would go undetected.

Just a thought.

I've been tested for GI ova and parasites, but I don't know if that's the same tests for heart and brain stuff.

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Hi, welcome :huh: I think it's great that you are looking into a cause for POTS. I really believe that this is very important to do. For years doctors told me that my POTS was due to ehlers-danlos, and after hearing that I never really confirmed the diagnosis because I figured I couldn't change much. But a few years later I started having new problems, which led me to a new doctor and a lyme diagnosis. I've now been in treatment a few years and have seen improvement with my POTS symptoms. My regret of course is not having pursued finding a cause earlier. On the issue of parasites, I got one of those too from a tick - Babesiosis.

I hope you find some answers!

Pam

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My symptoms got really severe after I was septic after a cat bite and had to be hospitalized on IV antibiotics for a few days. I have always had some issues with dizziness and heat intolerance, but nowhere near what it developed into. None of my doctors really knew enough about POTS to test me for possible causes and I was at the Mayo Clinic for 2 weeks with testing before I got a diagnosis and was ready to get out of there! :blink: I've always suspected that there is an autoimmune component for me b/c I have severe allergies, Graves disease (autoimmune thyroid disorder), and all this worsened after the severe infectious insult. It would be interesting to see some research done on that but at this point any research is good research!

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