Cleveland clinic

[Bailee]

 

Update: went to Cleveland clinic yesterday. QSART test showed that my sweat volumes proximal leg and foot was low while the responses at the forearm and distal leg are normal. These findings are nonspecific for etiology but are consistent with a postganglionic sympathetic sudomotor abnormality like that seen in patchy or non-length dependant autonomic/small fiber neuropathy. I’m waiting 2-3 weeks for the skin biopsy. However for the tilt table test my heart rate only reached 117. Which is weird because when I stood and did a poor mans tilt table test two weeks ago at the neuromuscular doctor my heart rate went to 142 and my blood pressure increased. The impression of the test said this cardiovascular autonomic test panel is notable for mild accentuated postural tachycardia. This finding is non-specific and may be seen in a variety of conditions including deconditioning, anxiety, or hypovolemia, and has also been described in postural orthostatic tachycardia syndrome (POTS). After the test I had a headache and bad fatigue. I go back on November 29th. Just got a message from the doctor “QSART is compatible for autonomic/small fiber neuropathy. 
Results from autonomic test with tilt table may be seen in POTS.
Still awaiting for skin biopsy results. 

[MomtoGiuliana]

11 hours ago, Bailee said:

 

However for the tilt table test my heart rate only reached 117. Which is weird because when I stood and did a poor mans tilt table test two weeks ago at the neuromuscular doctor my heart rate went to 142 and my blood pressure increased. 

In my experience, a POTS patient may not meet the orthostatic criteria for POTS daily or hourly.  That doesn't mean they don't have POTS.  My specialist has said this.  He has said in the past that he diagnoses it not strictly on one tilt table test, necessarily, but additional information including symptoms and other tests to rule out other problems.

Also "only" 117 bpm on standing seems likely a bit excessive.  Everyone is different of course, but I doubt most people have a hr of 117 just bc they stand up.

[MTRJ75]

It seems to me that these tests are designed with the thought that people are equally symptomatic all the time when POTS/dysautonomia is a bag full of wavering symptoms. You don't have the same ones every day or even every hour. This is pat of the reason my cardiologist told me a tilt table would likely be a waste of my time and energy. Shouldn't the data in your records, noted by doctors on frequent occasions in the past when someone was more symptomatic far outweigh the random day and time they chose to test you when you might not be as much? Why don't they just test the things that should be more constant? 

[Pistol]

@MTRJ75 - while I fully agree with the statement that our symptoms are individual and not the same each day I have to disagree with the TTT. Yes, TTT's can be inaccurate, however - they will confirm the presence of ORTHOSTATIC symptoms, which are the main symptoms in Postural ORTHOSTATIC tachycardia syndrome. Most dysautonomias will cause certain orthostatic abnormalities, such as POTS, NCS, OH ... all of these CAN be detected with a TTT. 

[MikeO]

@MTRJ75I had two positive TTT's that demonstrated nOH. Both were done by the Cardiology department but because the tests did not show any heart issues I was pretty much left to find help elsewhere. Maybe your Cardiologist thinks a TTT may not produce anything he may be able to work with?

As @PistolMentioned the TTT's will confirm the presence of orthostatic symptoms and i believe they can use a drug to induce a reaction if you are not presenting naturally at the time of the test.

I do have to say with data in hand my new team has been able to make needed med changes that has for the most part helped with my quality of life. 

[MTRJ75]

Well, she said it that if she tried hard enough with a TTT she could probably make me pass out and find something, but it wouldn't change her treatment for what she's already seen without it. 

[MomtoGiuliana]

I'm sure doctors diagnose POTS or dysautonomia without a TTT.  My sister was actually diagnosed without one.  This was based on the fact that I had a diagnosis and also her symptoms.  Orthostatics can certainly be measured without a TTT.  

At the same time, the TTT is the gold standard for diagnosing POTS.  And there is a lot of information it can provide, albeit a snapshot. 

It would be generally used along with evaluation of other tests and symptoms, to determine a diagnosis and treatment plan (basically what I had said above).

[MikeO]

On 11/16/2021 at 11:13 AM, MTRJ75 said:

but it wouldn't change her treatment for what she's already seen without it. 

I kinda had a similar response to my request to have some additional autonomic testing done. As my dr put it, she was good with the data the prior TTT tests demonstrated and by the confirmation of the positive (poor man's) office orthostatic tests have shown. So as it was put the additional testing would not change the treatment plan.

She is also confident i do not have an issue like MSA or Parkinson's.

[Bailee]

Hello I’m still new to understanding my diagnosis of pots I’ve been looking online and a bunch of people said that ivabradine does help their tachycardia but unfortunately doesn’t do much for the lightheadedness which I am dealing with. My question is what helps improve blood volume for me after I do my recumbent bike I feel a bit better along with electrolytes and salt tablets . I was recently wheelchair bound so I’m grateful for my small bit of progress that allows me to walk around with a walker. But I can’t shake the lightheadedness.