Type Of Pots...?

[Jacquie802]

Just curious-I see threads where people talk about the type of POTS they have. I have no idea what type I have; my doctor never told me they type. How do you find out the type of POTS you have? Can you tell just based upon symptoms?

Jacquie

[wyominglacey]

I also have the same question. I didn't even know there were different kinds until reading the stuff on here. Part of it may be that I still haven't found a doctor close to me that will ever do anything else to figure it out either.

[bellgirl]

There are other disease entities that can cause the dysfunction of the autonomic nervous system, but then there is pure autonomic failure, which makes dysautonomia the primary condition. There are still a lot of whys out there!! Like I have Mitral Valve Prolapse, sleep apnea, and hypertension, but not everyone has these issues. I have some characteristics of Marfan's syndrome, too. There are a lot of connective tissue disorders, autoimmune diseases, mast cell issues that can attribute to POTS, too. It might effect the type of treatment you receive, as to what type you have. A lot of the treatment is trial and error, too. We all are very sensitive to medications. It's quite complicated. Anyone else to give insights would be appreciated!!

[Jacquie802]

I had a sore throat 8 years ago and then began having POTS symptoms....I believe mine is post viral. I was hoping that 8 years later (i.e. present time) I'd be fine since that is what my doctor believed, however, I am still symptomatic. Mine seems to come in waves-I'll be okay for a week or two sometimes even a month (by fine I still have symptoms, but I feel like I can somewhat lead a normal life) then I begin to have severe symptoms, like lately, and feel as though my life is significantly affected...My "main" symptoms are tachycardia, severe lightheadedness (this is the worst symptom for me, because I feel as though I am going to pass out a lot), heavy feeling in my legs and feet, severe nausea, headaches, and lots of "hot flashes."

On a different note I had an EEG which showed sharp spike waves in my left temporal (I think) lobe, so a neuro is looking into possible seizures, esp. because my mom has epilepsy...

[Lenna]

When my son developed POTS, the doctors assumed that he was vasodilated. So they prescribed medications that would constrict his blood vessels and all those medications made him feel worse. At the time I had no idea that there were different types of POTS. Three years later he participated in a clinical study on the effect of nitric oxide on POTS. That's when we realized that he was vasoconstricted and falls in the category of "low flow" POTS. He needs medications to dilate, not constrict his blood vessels. He had been trying all the wrong medications for 3 years. So for Dan, learning what type of POTS he had made all the difference. Unfortunately most people dont' have access to the type of testing Dan had.

[McBlonde]

Does that mean if your symptoms are helped by vasoconstictors such as Midodrine that you have the opposite of "low flow" POTS and what is that type of flow called? Thanks!

[CarrieJessica]

So someone who is familiar, can you share where we could read up on the different types of POTS? My doc is familiar only with the diagnosis criteria and basic treatment of salt and water loading, I don't even think he knows there are types.

[tachyfor50years]

Jacquie,

I am in the same boat!

[bellgirl]

There is a topic that should be close to the top of the discussion again that was posted back in 2010 that I just commented on that might answer some of your questions regarding high flow versus low flow POTS...hope you can find it!!

[Anoj]

When my son developed POTS, the doctors assumed that he was vasodilated. So they prescribed medications that would constrict his blood vessels and all those medications made him feel worse. At the time I had no idea that there were different types of POTS. Three years later he participated in a clinical study on the effect of nitric oxide on POTS. That's when we realized that he was vasoconstricted and falls in the category of "low flow" POTS. He needs medications to dilate, not constrict his blood vessels. He had been trying all the wrong medications for 3 years. So for Dan, learning what type of POTS he had made all the difference. Unfortunately most people dont' have access to the type of testing Dan had.

i agree with this post! i have a similar story ... found out i was hyper recently, and my meds have changed.

[sarahm]

According to my doctor this is one of the things they are still trying to figure out. I was in a research study and one of the days was devoted to an attempt to classify people with POTS. In this case they were attempting to do so by looking at my sweat response, heat sensitivity, and sweat gland biopsy. I don't know the results yet though or if they were even successfull in being able to classify people. Like Lenna's son my experience with this kind of testing has only been as part of a clinical study.

[Lenna]

Does that mean if your symptoms are helped by vasoconstictors such as Midodrine that you have the opposite of "low flow" POTS and what is that type of flow called? Thanks

Well, I think it at least rules out low flow POTS.