Is This Possible ?

[Achilles2323]

is it possible to get pots and have nothing else cause it?

they are not telling my what type of pots i have they just told me i have it

they have also not told me what might be causing this

i cant imagine why it would just come on it self?

[jpjd59]

I believe some people have POTS and the cause is not known. Try thinking back to when you first had symptoms. Was there an event that could have triggered it? In my daughter's case, they believe a virus was the cause. This is helping us in her treatment because it gave us an idea of which way to turn and it gave the doctor's clues on what was happening in your body.

[looneymom]

I have been told that it's best if you only have POTS and nothing underlying by our cardiologist. However he has told me to keep track of all my son's symptoms and symptoms that keep recurring or make POTS worse to let him know. At this time, our cardiologist is talking to people at Vanderbelt Clinic. My son has low dopimine and seratoin levels. At this time we still do not know what type of POTS he has but know that it was caused by a virus during a growth spurt. I would suggest that you keep track of symptoms, take you blood pressure daily, ( take when feeling somewhat good and when symptoms are at their worst), find a family doctor who will listen, research your symptoms and bring those articles in to the doctor.Last all, never give up on looking for an underlying condition especially if the symptom causes a setback in your condition.

[Christy_D]

My son's was a very gradual onset, sick a day here and there(missed 20 days of school in 5th and 6th grade). Then, he started being sick for 2 to 3 days at a time(missed 30 days of school in 7th grade). But in between being sick he was perfectly fine. Until midway through his 8th grade year, it became a daily event and severity sky rocketed. We never knew the cause, thinking a large growth spurt and puberty caused it. Those two factors probably still play a role in all of this, but this year he was also diagnosed with MCAS. His MCAS doctor thinks this may have all been triggered from an abcessed tooth he had in grade school, just his theory can't prove it. You may never know the cause but I do know this whole time we were only trying to treat the POTS and the MCAS wasn't being addressed so I think we weren't making any progress on the POTS.

[bebe127]

Right there with you Achilles. I was diagnosed with "what is probably POTS" by an electrophysiologist. Now you would think that if one is diagnosed with an illness that is "probable" would not the dx. dr. have a myriad of tests done to find out the answers to the questions of the 5 W's??? Not in my case anyway! After dx me with "what is probably POTS" his next brilliant suggestion was "Eat more salt, drink more water and go live a normal life." In the words of Barney on How I Met Your Mother..."True story!" This dr. never even bothered to tell me how much salt or water. To date, I still, to this day, don't know how I got POTS (even if I truly have it), what type of POTS I have, or how or if I will ever be rid of it. I get treated by my GP (after going to various other specialists) and he was the only one that even suggested Beta Blockers, which I am now on and have been for about 2 years.

I believe what looneymom says in that we need to never give up on looking for a doctor that will listen, researching as much as we can, keeping track of EVERYTHING and taking it all in when you have a dr. appt. I also keep a jounal of how I'm feeling too. I don't necessarily keep up with it daily, but I do record things like: how I'm feeling that day, BP/HR readings, symptoms I am having, reactions I might have and the like. I take this in with me to the dr. as well. I have even typed up a short, to the point paper explaining the chronology of my illness (and the Dr. actually sat there and read it!!) I think I might even make up a table on the computer so that I can keep better track of things (I'm kind of a spaz that way!). Mainly so that if I ever get to a Dr. (besides my GP) that is interested in my medical history and helping me to improve my quality of life, I'll have it all for him/her right then.

Sorry for the novel...

Hope you get some answers

[Chaos]

Unless you are seen/diagnosed at an autonomic center where they do the full autonomic workup, you may not get diagnosed with a "type" of POTS (and maybe not even then). Frankly, just finding a doctor who knows enough to diagnose you with POTS at all is pretty remarkable at this point in time- sad but true.

At this point, the "types" aren't even agreed upon amongst the specialists themselves so it's all still very much a work in progress. The good news is that at least it IS a work in progress....just way too slow for most of us to appreciate.

[Christy_D]

bebe

I did the same for my son. I have several worksheets in Excel...Medical history, list of tests and results, list of symptoms every medication he has ever taken, why and why it was stopped. It is just easier to have a doctor look at these at a glance, plus I don't want to leave anything out.

Also, Achilles, my son's doctors didn't push the MCAS diagnosis, I did. So do as much research as you can and email doctors with questions, etc.. I emailed Dr Afrin presenting my son's symptoms and asked him questions. He agreed it was worth looking into. I don't let the doctors dictate to us. If I left it all up to the doctors my son would still be labeled with anxiety or depression,etc..

[jackiemxoxo]

yes, I got sick 3 years ago with autonomic symptoms out of nowhere and after ruling everything out, they think mine was viral. However, i never felt "sick" with an illness before it came on, I was just sitting in the movie theater and my heart started racing and then symptoms got worse for the next couple months from there. I have gradually gotten better over the past few years and every time I do feel bad my doctor thinks its a "flare up" from the virus... I don't know what type of POTS I have either cause my doctor always calls it autonomic neuropathy. I think it is important to explore causes though especially if you are still really incapacitated cause their might be specific treatments for that cause. Also, I think it is always hard to tell whether it is viral or has an autoimmune component.

[Katybug]

The other unfortunate part of POTS is that the underlying causes can be as illusive as a POTS dx itself. Things like MCAD and EDS, Lyme or Lyme co-infections, "mystery" viruses that all the kids in a class had but this one person never really recovered from, pregnancy (why one woman but not another)...these are all possible causes. Many of them are hard to test for, have no test, or have tests that are completely unreliable. I know it is frustrating for us to not get what we consider straight answers but the straightest answer I've received is from my immunologist who told me early on in my relationship with him, "The one thing I do know is that there is more we don't know than we do know in medicine." I think he is right. When we get to rare syndromes and diseases such as POTS, it is often not a clear diagnosis and treatment regiment for the doctors.

[bebe127]

I agree with your Dr. Katybug. My hubs always says, "It's good to know what you know, but even better when you know what you don't know." So wise...my hubs! It is only when we are aware and accept what we don't know, that we can adjust our path to finding out and the "not known" may become "known". I wish all doctors were aware of this. In the wordage of Yoda...wise doctor, you have