Pots/ Tilt Table Question

[hholmes13]

Hi Everyone,

I have a few questions. I have been having some strange symptoms lately and am wondering about my original diagnosis. When this all first started, my doctors in family medicine were convinced I had POTS. It got frustrating because they didn't do much for ruling out other stuff and tried me on antidepressants right away. (Especially frustrating because my primary care is all at Mayo in Rochester...it felt like they weren't really doing anything with all of the resources available.) My tilt table results were borderline. My hr jumped up from 65 to 120 in the first 2-3 minutes of the head up tilt. However within a few minutes, it settled back down into the 80's. I did get really uncomfortable and light-headed during the test, but I did not faint. When I finally got into a neurologist who specializes in automnomic dysfunction he said he believed that I didn't have POTS because the increased hr did not stay that way and didn't go any higher. I was told that I have orthostatic intolerance and blood pooling problems.

Lately though...I have been noticing my heart racing more when I am up and moving. Just yesterday, I was making some bagels and while I was kneading the dough, my heart started racing. I checked my pulse and it was 125. My normal resting hr is in the mid 50's. That seems a little excessive for standing still gently kneading dough. I got really light-headed and nauseated and had to go lay down. My heart has been doing strange stuff like that more often lately. I get palpitation/pain feelings with it and get a little short of breath too. Then the dizziness/nausea comes on. It doesn't happen every time I'm moving around, but it's happening more and more.

So...my questions are, do you think this possibly could be POTS? (I've seen some of you talk about some pretty fast hr...mine hasn't gotten that bad.) Also, did all of you have a positive tilt test when you were diagnosed? Finally, how long should I let these newer symptoms go on before I contact my neurologist again? Any advice would be helpful. Thanks!

[jknh9]

For POTS, you don't need to faint on the TTT. My test was positive really quick, HR jumped something like ~60 BPM in the first 1-2 mins, then I fainted after about 3 minutes and had a seizure while unconscious. BUT I also have NMS, which is what causes my fainting/seizing, according to the cardiologist.

I'm not sure what the difference is between POTS and orthostatic intolerance, but my heart rate will jump and I'll get the dizziness and nausea during a variety of activities- standing too long, sitting too long, if I'm too warm, etc. regardless of what I'm doing (stirring a pot of soup vs. lifting weights or something). I'm always in favor of contacting the doctor when I notice a change in symptoms if possible.

[Yolaclover]

I did not.

[HopeSprings]

I saw a Dr. who specializes in POTS a few years ago and at the time he did an in-office laying/standing test and wasn't convinced I had POTS. I went back to see him this year - he did the same test and said I didn't think you had POTS then, but you definitely do NOW. So was I having a "good day" that first time? Did he miss something? Or did I just get worse? I dunno. I also had a TTT (with another Dr.) which wasn't terribly dramatic - heartrate went from 70's to 108. It met the criteria, but because it wasn't a very fast heartrate, the Dr. called it "mild orthostatic intolerance." Since I am with me every single day and know what actually happens -- heartrates in the 120's all day (when I stand) and up into the 150's on a really bad day, I know I have POTS. So I would say get yourself a BP monitor or HR watch and observe for a few days. I did this recently and it was very enlightening - I learned a lot. You can always go back to the Dr. with your findings if you still suspect POTS.

[Libby]

I did have a positive tilt. But a lot of people who are diagnosed with POTS don't. I was just looking at a paper evaluating syncope frequency in OI (POTS and Orthostatic Hypotension patients) and while POTS patients do have a higher instance of positive tilts than OH, only 40% of them fainted during the test.

For a POTS diagnosis, they're looking for heart rate increase, not so much a positive tilt. From what you've said, it does sound like POTS to me. There are so many factors that influence a person's reactions that it wouldn't be crazy to think you had a false negative test that day.

If you're feeling worse, I'd call and make an appointment. Even if you don't get a more specific diagnosis than OI, you could at least get some help with the symptoms.

I'm not sure what the difference is between POTS and orthostatic intolerance

POTS (and NMH) is a type of orthostatic intolerance.

[kclynn]

Yes, it is like Libby said. They also look at the constellation of other symptoms when the increase occurs. People can have larger increases in HR but not have any other symptoms.

[hholmes13]

Thanks for the advice everyone. I've started keeping a journal of symptoms so I can really track what is going on. Then I'll really be able to see if I'm having more bad days than before. I'm thinking of putting a call into neurology just to update my doc on what has been happening. I was wondering why they were so quick to discredit POTS with the TTT because it wasn't a full-blown test. They only put me upright for 10 minutes and that was it. I also wasn't feeling too symptomatic the day of the test...maybe I was having a "good" day. Anyway, I'm just keeping an eye on this to see if I'm just having a bad spell or if it really is getting worse. I've been on 30mg/day of Midodrine for a little over a month now and it had been making a difference. It has just been the last week that my symptoms have started to worsen. I'm hoping it's a bad spell and things will start improving again. Thanks again!

[Frugalmama]

I was diagnosed with a TTT, but did not faint (I just experience almost constant pre-syncope. My cardiologist did mention at the time that she has not seen much correlation to the degree of jump and the level of disability. My resting HR is usually in the high 70s to low 80's, and the majority of the time my heart rate is just over 120 when I have a major POTSy episode....and I am experiencing a high level of disability. My doc says she has had people whose rates jump up 80-90 beats a minute, but who experience far less other physical symptoms than I do. Such a strange illness!

[Libby]

You were only up for 10 minutes? They didn't really give you a chance to have a positive ttt. I mean, I went at 12 minutes and was told that THAT was quicker than most. They were going to keep me up for an hour, bring me down to inject something to make my hr go up, then stick me up for another 30 min. But that's their protocol for NCS diagnosis (which was what they were looking for).

I think they were really only looking at your hr for POTS. You might want to ask for a full on TTT. If you're going through all the hassle of being strapped to a table in the first place, why not see what happens.

[rach73]

Hi,

I had a positive TTT for POTS back in January this year. I don't know what my starting / resting HR was but I went into the 150pm range. About 5 minutes in I started vomiting which was a nightmare as both arms were strapped to my sides. I have no idea how long I was upright it seemed to take forever.

My HR did start to drop after a while of being stood but was still in the 120 bpm range. My blood pressure stayed elevated during the TTT. As soon as I was lowered back down my HR and BP dropped significantly returning to normal within minutes. The guy doing the test said he had never seen such a dramatic response to being put back in the supine position. He told me there and then I had POTS.

My sister who was tested last month by the same hospital team went from 80bpm resting to 162bpm standing. They gave her the GTN spray up her nose and watched her heart rate / BP drop they then swiftly lowered the table before she passed out. I'm a bit jealous as they went through the print off with her I am still waiting for a copy of the print off! lol

Both my sister and I have now been diagnosed with POTS and EDS hypermobility.

Rach

sorry for any mistakes in this - I have full blown ptosis and can't see out of my right eye again ..... still no answer to why that happens.

[Madelines]

I just has a similiar situation happen to me. I was diagnosed 5 years ago by Dr. Randy Thompson. I had a positive ttt in 2012 and have been very ill for years. When I started having more scary symptoms (full body tremors, vomiting etc.) he decided to send me to Vanderbilt. They did a 10 minute TTT and I passed it. I happened to very relaxed that morning. But I failed the EPINEPHRINE blood test which left me with a diagnosis of HYPERADRENERGIC POTS..........so, yes a short TTT can show a false negative. Now I need a 

MAST CELL specialist! Can anyone please give me a referral?? I'm located in south Florida.

This is my first post :-

Madeline

[KellyA]

Madelines, I wish I had your Dr! I passed my ttt, but not the breathing one. The decision so far is no POTS. But my norepinephrine is sky high supine, and higher standing. My neurologist has discounted that, saying it doesn't matter the value, the fact that it doubled is normal. I think he's wrong for hyperpots. You'd only see a huge increase with a pheo. My Dr thinks I might have MCAS. Someone recommended a good Dr for that, I'll look. It's not in Florida though, but could maybe give a referral?

[kalamazoo]

Do you check your blood pressure

[KellyA]

Yes. It's pretty good now, on meds. But definitely higher bp and hr from supine to standing. Was much more dramatic before, which I kept logs of. That's why he did the ttt on me, but evidently all that history and symptoms don't count if the ttt is normal that particular day. I think I needed to be off certain meds longer than I was.