Do You Know The Root Cause Of Your Pots?

[FarmerAmy]

I'm wondering if many of you know the root cause of your POTS. I don't, but I'm starting to believe more and more that this is critical to treatment.

If you do know the root cause, how did you figure this out? I am struggling with where to turn to find people who might be able to help me.

[futurehope]

I believe in my case it is Mast Cell Activation Syndrome. My mast cells degranulate (release chemicals) or get triggered from various things at various times. Then, they do not "turn off" when the crisis is past. The result: many different body systems of mine are under assault from chemicals that are not supposed to be there.

The list of what could trigger my misbehaving mast cells is big: heat, cold, emotion, chemicals, food, medicines, illness, etc. Not everything triggers me all the time. It is a challenge. I am currently trying to find an H1 H2 leukotriene, mast cell stabilizer meds, to keep my mast cell from degranulating with the help of a mast cell specialist. He's a hematologist. Tune in to my ongoing saga.

[HopeSprings]

It's the million dollar question. I have small fiber neuropathy, which may be at the heart of the POTS symptoms if the autonomic nerves have been affected. I've also been diagnosed with CFS, which can include Orthostatic Intolerance as a symptom. Also chronic Epstein Barr virus, which my Dr. said can affect nerves and possibly cause the SFN, which I guess could cause the POTS. I'm not %100 sold on any of these and still trying to find answers. I agree that finding the root cause is critical to proper treatment.

[peregrine]

In my case I think it's a combination of joint hypermobility syndrome/EDS/whatever and sympathetic hyperactivity triggered by taking Cymbalta, with maybe some borderline small fiber neuropathy involvement (cause of that unknown, none of the usual and not-so-usual tests were positive). Since the root causes are not in themselves really treatable (though we may be able to do something about the sympathetic hyperactivity), I mostly focus on symptom management. No obvious autoimmune involvement for me.

[Katybug]

I don't know it for sure but I think I'm pretty close. We know I have some sort of inflammatory connective tissue disease and we think some form of EDS. I have a rheumy appt with a Hopkins rheumy in mid-Aug and an appt with a geneticist in Feb 2013. I know that high dose prednisone made all of my symptoms go away within 3 days of starting treatment. I ahd to quit due to a reaction to the sustained level of the drug. BUt, it did seem to confirm we are on the right track. I kept tracking down leads until I found this awesome immunologist. He's here in Baltimore...Dr. Michael Mardiney Jr. He is THOROUGH and SMART. He took things as far as he could get them and now wants the additional opinion from the Hopkins rheumy docs because he basically thinks I need a drug like methotrexate or an anti-TNF sort of drug. I went to him because I thought I might have MCAS and we uncovered more. I hope that helps. I absolutely agree that treating the symptoms without knowing the cause seems like putting a wet bandaid on this particular problem.

[Anoj]

My onset was withdrawal from an SSRI. My doctors think the drug was masking my problem, but I think the withdrawal itself was the cause (combined with alcohol). I don't know what the "root" would be in my case, and I've never met anyone we whose dysautonomia was triggered this way. Hard to convince the medical profession that the drug withdrawal could have done this.

I have neuropathy, but I also have hyper components, so I guess mine is "mixed" POTS.

[Mytwogirlsrox]

Nope, I can only assume pregnancy, surgery or virus caused mine?!?!?

[misstraci]

I am not certain what has caused my dysautonomia although I wish so bad that I could figure it out!!!! It's been said that my difficult delivery (pregnancy/delivery/complications thereafer) are what brought it on.

[abbyw]

I also don't know. Sudden onset. Self- diagnosed. I don't have a doctor who knows anything about it either, so I wouldn't even know how to go about testing. Symptoms are managed now with an SSRI, but I am a person who needs to understand "how" this happened. I feel that something must have caused this. I wish I knew how to get to a doctor who would try to help me. (I live overseas, and the Pots "expert" I went to here tested me with a poor man's tilt when I was on the SSRI, and told me that I must have felt ill because I have 7 kids and a job, and I should try not to think about it so much.)

[peregrine]

Anoj - sounds like we are actually kind of similar. My POTS was triggered by starting (not withdrawing) from Cymbalta, an SNRI, and removing the drug didn't fix the problem. I think I always had some small fiber neuropathy and probably joint hypermobility-related pooling, but the hyper side - higher/labile blood pressure, tachycardia, spaciness, etc - didn't show up until the Cymbalta. It took a while to convince the doctors that it was not, in fact, just random, and that it was indeed triggered by Cymbalta.

[McBlonde]

I fainted the first time when I was 3 years old, so I guess I was born with it.

[FarmerAmy]

Thanks for the feedback everybody! I've had POTS symptoms most of my life. I've been slowly going downhill for 5+ years and in November my symptoms really flared up and I have been disabled since then. I *think* the flare up was triggered by taking progesterone, but I will probably never know for sure.

My current question is regarding what is causing my ongoing symptoms. Is it MCAS, SFN, Chiari, etc? At one point my cardiologist told me that understanding the mechanism wasn't that important. But now I realize this is crazy talk! How can I possibly improve my symptoms if I don't know what I'm treating???

I am currently going to an MD who practices integrative medicine. We'll see if she comes up with anything. And my cardiologist said she would probably refer me to another doctor.

Like many of you have probably experienced, I am sick of going to doctors. I go back and forth between just accepting my current health problems and trying to find an answer. But I think I have decided to persevere in order to try to figure out why my body has turned on me and if there is anything I can do about it.

[NMPotsie]

I have had some degree of OI my whole life, but the H1N1 vaccine in 2010 was what triggered my current symptoms (and much more severe ones right after the vaccine). I couldn't walk without bumping into the walls, ride in a car without getting sick, or stand without flushing and passing out. It's better now, but I would NEVER get another h1n1 vaccination. I've had mast cell symptoms since I was 13, but the flu shot was what pushed me into POTS.

[HopeSprings]

Peregrine and Anoj - a lot of my problems started with withdrawal from Klonopin, then Paxil. So that makes 3 of us (at least) with a possible medication trigger.

[Kellysavedbygrace]

This is a really interesting discussion. Thanks FAmy for starting it.

Don't know the cause but was triggered initially by a root canal with sudden onset last Sept. Had more dental work about 3 weeks ago, a filling this time- same side, different local anesthetic, and I had a complete relapse of symptoms. I have neuropathy, severe blood pooling w/ decreased cardiac output and high Othostatic NE. I suspect MCAS, NET and/or some hormonal mechanism. Hope this year to see specialists in MCAS, Endocrinology and research program at Vandy- hoping I'll know more then.

I agree with all of you that knowing the cause/ trigger/mechanism is critical in building the right treatment plan.

[Guest Alex]

my dr said hypovolemia, but his evidence is more of a speculation than anything.

wish I had the right answer or a dr willing to help me find the real cause.