Normal TTT - what now?

[missy]

Hi all,

I have hEDS, Chiari malformation, mast cell problems, celiac disease + a few others. For years, I've had fatigue, syncope/pre-syncope, blood pressure and heart rate issues - my usual blood pressure was 90/60 and would frequently drop, especially during mast cell reactions. Multiple doctors have theorized dysautonomia was the cause, and 2 years ago a doctor diagnosed me with orthostatic hypotension. Last week, after waiting almost a year, the doc called me up to have a tilt table done.

There was 15 minutes of standing, then another 15 minutes of standing while they administered isoproterenol. I had been having an incredibly good day and had few symptoms during the test - I barely felt like I was standing, I was resting on the bed so much (I'm morbidly obese and I wonder if that affected things). My heart rate did not meet the requirements for POTS, and my blood pressure remained stable, so they have listed my results are normal. I have no idea what the actual BP/HR measurements were - I will find out when the doctor compiles the report in a month. I did not actually meet the doctor or get to discuss any of my issues - I was just sent in for the tilt table, and since my results were normal, the doctor elected to not meet with me. No follow up. I do now my heart rate got pretty high during the isoproterenol portion of the test, because they told me it was too high and they were going to stop the isoproterenol and bring my HR down. But in all, I have more symptoms in just a few minutes of standing on my own then I did during the TTT.

I am completely devastated. I know I have dysautonomic issues and the orthostatic intolerance has worsened incredibly over the last 6 months. I used to get daily chills from blood pressure drops but my blood pressure has evened out to a normal reading and not caused many issues since starting treatment for mast cell a year ago (max doses of H1, H2 blockers and sodium cromolyn) - at least, that's the only thing I can think of that would have improved my life long history of low blood pressure. My heart rate continues to bother me and the week after the tilt table was the worst I've been, autonomically speaking, in a long while - my swallowing, breathing, heart rate, digestion, headache, nausea, etc affect me daily but were extra awful. However, I am considered to be fine.

Are there other issues that cause similar problems to dysautonomia but aren't dysautonomia? Why would the tilt table be normal when my history is filled with dysautonomic problems? I'm not in the US and this doctor is our only specialist, country wide, so I can't even see another doctor or have another tilt done. 

I have been getting increasingly worse for the last year and all my tests keep coming back negative and I'm at the end of my rope. Any thoughts or suggestions welcome.

[BuffRockChick]

POTS isn't the only dysautonomia, so you could have a different diagnosis in the category.  The link below lists dysautonomia disorders other than POTS.

http://www.dysautonomiainternational.org/page.php?ID=35

Your test may not have been done correctly, may have not been interpretted correctly, or may have been done on an unfortunately asymptomatic day.

 

[RecipeForDisaster]

I'm in the exact same boat. Apparently improperly done TTT, and my report showed only the BASELINE heart rate and blood pressure, not one reading during the test although I know my pressures were below 90. Grrrrr. Doctor didn't see me either. Thank goodness my test didn't use isoproterenol because I don't think I could handle it. I can't get in to another doctor until August. My TTT was in January and I didnt get results until March or April.

I'm also getting worse and worse. I hope you find an answer as well. I'm thinking I have cerebral hypoperfusion which they did not check for. Also, the stress of getting to and around Boston, parking, trying to stay on time, finding the place in a rush... all of that improves my blood pressure. It was definitely higher because of all that, and I bet your situation was similar.

[sean82]

I had a TTT done in 2012 and it was supposedly normal. Even though my heart rate shot up.

last year, in 2016 I had a TTT done by an autonomic specialist and I do have POTS and dysautonomia for sure. If you think you have POTS, I recommend buying a blood pressure /heart rate cuff for your wrist. Omiron is the brand I use and its usually $50 you can order online. Its pretty accurate so start taking readings and recording. If you give me your readings, I can help give you some direction.

Take readings resting, then after 3, 6 and 10 mins standing. If your heart rate goes up 30 or more beats a minute then you have POTS. Also look out for your b presdure bouncing around because in my experience that can make you feel poorly. If you do have issues, work with your doctor and show him. Depending on results perhaps he can recommend a beta blocker or other appropriate med.

getting a diagnosis is first step and easy part but finding right meds is hard. I am diagnosed but still not well. Also if you have a holistic doctor that will look to see whats causing your issues perhaps you can gey to root of problem.

you can message me personally if you have questions. Thanks

[HangingByAThread]

Hi Missy,

I've had the tilt table test at 3 different hospitals.  I think my heart rate shot up to 145 during the first one but that was at the 25 minute mark (which doesn't qualify as POTS).  I went to Cleveland and it was the best 3 days of my life - barely had any symptoms (which was rare but I had no stress - no work, no children) and that test was normal (other autonomic tests were positive).  Months later I then took my own blood pressure at home after lying down, standing for 1 minute, then 3, etc. (as advised by Vanderbilt) and my reading fit the POTS criteria (I started crying, shaking and barely could get to 10 minutes of standing that day.  when I was done with the "test" I was wiped out for hours).  Then I went to Vanderbilt I didn't quite meet the criteria of POTS.  However, I was diagnosed with orthostatic intolerance and dysautonomia (a doctor at Vanderbilt told me they don't like to label everything because some syndromes overlap and they didn't want to pigeonhole me into a diagnosis).   I'm sure some folks could have the test 20 times and they would be positive all 20 times but I also think that for others, how you are feeling on a particular day can have a lot to do with the outcome of the test.  Also, my tests were months apart and little by little my doctors were telling me to drink more water, eat more salt, force myself to exercise, so I think that might have contributed as well - since I was starting to follow the POTS treatment without knowing it).  While I can't exactly claim I have POTS because I'm on a bit more of a delay, I have ALL the symptoms - and then some.

Missy, I'm curious to hear what your doctor has said.  Did you get back the report?  Did you have any other autonomic testing besides the tilt? 

[Flight272]

You could still have POTS with a negative tilt table test. Like you said, you were having a good day, and I think everybody with POTS has days on which they function pretty well. I've had a tilt table test for POTS, and my heart rate only went up 20 beats, which wasn't the thirty usually required, but I was having a fairly good day. I was still diagnosed with POTS based on my report of symptoms (usually my heart rate is 60 lying down, 90 sitting up, 110-120 standing, and 150 climbing stairs). I also had a 48-hour Holter monitor test which showed that my heart rate was above 100 over half the time. 

I did faint during the tilt table test, before they got to the drug part. The hospital I went to was trying to see if they could cram twice as many tests into a day, so they only gave me like 8 minutes before they were pulling out the drugs. I fainted before they got to them, so they diagnosed me with neurally-mediated syncope as well. 

Personally, I think the tilt-table test is flawed because it's only a snapshot of your entire life experience. Not to mention you're strapped to the table, and the table, even when upright, is not at 90 degrees. You're tilted back a bit, so that and the strap mean it's not so much standing as leaning. 

I'd try measuring your heart rate lying down vs. standing several times a day for a couple weeks (using a heart rate monitor of some type) and then take a sheet showing the results to your doctor.