How Do You Know The Type Of Pots You Have?

[kmichaelson]

Edit: I mean POTS with all caps in the subject line--oops!

Hi all, Sorry for what is probably a really basic question for you, but I see many of you referencing the type of POTS you have (hyper, combo, etc.), and I was wondering how you figure this out.

Did your doctor inform you as to what type of POTS you have, or is there information I could find that would help me figure it out? My pulse goes up a lot when I first stand (like to 130) and then after I stand for awhile my bp drops. (Plus, I normally have pretty low blood pressure.)

I was just diagnosed about a month ago and started Florinef, and I have my first check-up with my cardiologist this week, so I'm just trying to educate myself as much as possible and figure out what to ask him.

[rubytuesday]

Here is my experience and everybody's will be different. I started out nearly 3 years ago with occasional very near faints for first time ever--only happening maybe once/mo.--after shower, in church, in funeral home. Then on bike with 5 year old g-son that landed me in hospital. Tests being ok except for some B def. corrected, I had TTT (didn't pass out but was told I had neurocardiogenic syncope). Went on to 30 day event monitor at my suggestion to PCP (who had to send me to cardiologist to get ordered). He put me on Rx for some kind of runs of tachycardia about 2 1/2 weeks into the event monitor. Many med changes, more frequent near syncopes over the year to the next year--another TTT (no faint but started me on Florinef) and many med changes, many more freq near syncopes to this spring when BP (when formerly low) was running high (I tracked and printed out using MedHelp.org BP tracker--making notes of events and what I was doing at the time). I would take these to cardio when I'd see him. BP would drop really low and heart rate was really fast. But by spring this year cardio told me I was developing hypertension but that it was not caused by the Midodrine he had me on. He discontinued the Midodrine and referred me to cardiac specialist in dysautonomia. I was off meds all summer and was so debilitated from all the faints and lack of energy. The specialist first took BP sitting and then had me to stand and the BP dropped to criteria of orthostatic hypotension--only now instead of the heart rate going really fast when the BP plunges, it hangs in low 60s. He told me my autonomic nervous system is failing, that I would have fewer warnings of faints and that down the road I would probably need a pacer. I am pooling blood/fluid in my feet, legs (and trunk when semi-reclined or laying) and so whereas I was supposed to eat/drink salt, I have to do an about face and restrict salt. I still have to drink, drink, drink, and use high pressure compression stockings that are a real pain and now take a potent water pill (that makes the BP hang low) so it's a vicious cycle. I do know there are some with hyperadregenergic (sp?) POTS and I think those are the ones whose BPs run hypertensive. I am fairly new to this so still have a lot of questions myself. The goal of my cardiac specialist is to make me hypertensive and then work on the hypertension after it's where he want it. He never distinguished to me anything other than 'had I seen you a year ago I would have concurred with POTS but now you have Orthostatic Hypotension and your autonomic nervous system is failing'.

[Chaos]

In my experience it was the docs at the big centers (Cleveland Clinic, Mayo Clinic) that told me the "type (s)" of POTS I had. However, the reality is that the "experts" don't agree on what all the sub-groups of "types" are so you'll likely get different answers based on where you go. The art of getting an accurate diagnosis is still definitely a work in progress in the medical community.

[kmichaelson]

Thanks Ruby and Chaos! I'm currently seeing a cardiologist that is really nice and he's on this site's good doctor list, but he's not exactly a specialist in POTS either, so I'm not sure if I should see someone else or not. I have an appt later this week, so I guess I'll know more by then, but I'm certainly not improving yet after a month on Florinef, and the more that I read, it seems like it's really important to know the type of POTS you have to treat it effectively.

Also, just to clarify, I've had the tilt table and all that, and my bp dropped to 40/25 during it, but my pulse didn't go up significantly; however, just monitoring my pulse myself and at doctor visits, it ALWAYS goes up at least 30 beats when I stand, often above 120, so I was surprised that didn't happen during my tilt table.

I'm sorry you've had such a roller coaster of treatment, Ruby! Are your symptoms different now that your blood pressure is high instead of low, or do you still feel about the same (because it's still autonomic dysfunction)? It's frustrating to know that doctors are at a loss about our disease so often.

[julieph85]

i'm assuming I have hyper pots because when i stand up my BP goes up- to the 130's/ lower 90's and my heart rate goes up about 25-30 bpm. Interesting thing with me though is that my heart rate and BP goes down after about a minute of standing and I feel a little better, just light headed. However after a few minutes it will go back up again and then down again a minute later. It basically goes up and down the entire time I'm standing. That is actually normal. However, when it goes up I feel awful- dizzy, short of breath, chest pain... that is not normal and they don't know why. So I actually dont' even meet the criteria for any type of POTS but something is definitely wrong. I'm going to mayo in 3 weeks. I think you have to go to one of those types of places to get diagnosed correctly.

[rubytuesday]

Thanks Ruby and Chaos! I'm currently seeing a cardiologist that is really nice and he's on this site's good doctor list, but he's not exactly a specialist in POTS either, so I'm not sure if I should see someone else or not. I have an appt later this week, so I guess I'll know more by then, but I'm certainly not improving yet after a month on Florinef, and the more that I read, it seems like it's really important to know the type of POTS you have to treat it effectively.

Also, just to clarify, I've had the tilt table and all that, and my bp dropped to 40/25 during it, but my pulse didn't go up significantly; however, just monitoring my pulse myself and at doctor visits, it ALWAYS goes up at least 30 beats when I stand, often above 120, so I was surprised that didn't happen during my tilt table.

I'm sorry you've had such a roller coaster of treatment, Ruby! Are your symptoms different now that your blood pressure is high instead of low, or do you still feel about the same (because it's still autonomic dysfunction)? It's frustrating to know that doctors are at a loss about our disease so often.

Well it just is up and down. Yesterday I had taken water pill (had to). Today I did not and the BP's been in 120s/80s after I'd been up and about with chores. I imagine that a day like tomorrow when I have to do minutes of a meeting (takes me most of day using my laptop on sofa with feet raised), it will be low again from having to take another water pill for the blood and fluid that pools in my legs from the meeting I go to tonight. Getting up and down/the quick back and forths to bathroom is when it takes the big dipper. I felt a little close call in church but not as close as after therapy a couple of weeks ago. I definitely have had fewer since at least being with Midodrine and cooler weather.

[Serbo]

so those with hyper pots would you pass a TT if BP goes up? Excusing that your HR would be very high from standing still.

Can some one tell me what type of POTS i may have based on:

BP stays the same or initially increases on Tilt, then drops to point of fainting after 10 - 15 mins. HR increases above 30 BPM on tilt.

I am hypovolemic, I have the diabetes insipidus diagnosis, treated with DDAVP.

I have all the allergy problems,meds sensitivity, possibly MCAD

I have adrenalin rushes but not that often any more

I have EDS 3

Waiting on norephrine test results, so unsure where i fit yet. In the UK they generally only diagnose POTS, not the sub types.

Thanks