Can Someone Help Me With These Questions?

[Latacia]

Ok so I have postural orthostatic tachycardia syndrome. I haven't found a medication that has helped my symptoms and I feel like they are getting worse. I know chest pains are often associated with pots but I feel as though I am getting them more often now especially after walking,light cleaning,or laying down at night. Does anyone else have problems with frequent chest pains? Also, I have not been tested for any other dysauto disease and I am curious does pots normally come from another disease or can it just develop on it own? And who would I have to talk to about getting tested for other dysauto diseases? My family doc,neurologist,my cardiologist? Thanks in advance for your time! Hope everyone's doing fine in all this hott weather!!

[Chaos]

I'm curious who diagnosed your POTS in the first place? Did they do an autonomic reflex screening? That would potentially show autonomic neuropathy or other forms of dysautonomia.

POTS can be a primary diagnosis but it can also occur secondary to something else, for example diabetes, MS, and various other chronic diseases.

It can occur in association with Joint Hypermobility Syndrome or possibly Mast Cell Activation Syndrome.

The main DINET web site describes all this very well in much more detail so hopefully you've had a chance to read that info.

Personally, I've had the autonomic reflex screening run by a cardiologist (at Cleveland Clinic) and by a neurologist at Mayo. It probably depends who you can find near you who might have some knowledge of all this. It's definitely a challenge we've all confronted...trying to figure out how to find a doctor that might be able to help us.

Good Luck!!

[mwise]

I had a tilt table test & QSART done by Neurologists at Cleveland Clinic. That is how they came up with my diagnoses. I do know for a tilt table test-your primary, cardiologist or just about any physician can order the test. Really any doctor who has knowledge of Dysautonomia Lol should be able to order autonomic testing for you. Good luck and keep us posted

[Latacia]

My electrocardiologist and my neurologist both diagnosed me with pots. I have had two tilt table test. One by my neuro and one by the cardiologist. My neurologist also did a reflex screening.

I was told some people who have pots have other types of autonomic disorders such as Lyme disease.but, I may be wrong thats why I asked.

[Chaos]

I think there are people with Lyme disease who seem to have autonomic dysfunction associated with it, but I don't think Lyme disease is considered another autonomic disorder in and of itself.

There can be multiple causes for the autonomic dysfunction that you have (aka POTS). Are you trying to determine if you have one of those co-existing conditions, such as Ehlers Danlos or Mast Cell Activation Syndrome or a mitochondrial disorder that seem to pre-dispose you to the autonomic problems? Or are you looking for other diseases that can cause autonomic dysfunction such as Multiple Sclerosis or Diabetes? Sorry if I'm telling you things you already know. I'm just trying to figure out which type of specialist would be helpful for you. Hopefully with a cardio and neuro on board, they've run a lot of the tests that would tell them if some of those things I mentioned are the problem, especially things like MS or Diabetes. Your primary could probably run a test for Lyme.

Otherwise, if you're looking for things like EDS- you'd probably need to see a geneticist, or possibly a rheumatologist. If you're looking for MCAD/S you'd need to see an allergist, but someone specialized in Mast Cell disorders. And for Mitochondrial stuff it seems there are 3 places in the US (according to ToddM) who do the latest testing for that stuff.

And then, about 80% of POTS patients have "idiopathic" POTS, which means the docs have NO idea what causes it.

Hope this helps somewhat. Good luck!