My Ttt Results

[bizbiz]

Hi All,

I finally got to see my specialist to get my TTT results.

I do not have POTS, but I have been diagnosed with Orthostatic Intolerance.

My MSNA (muscle sympathetic nerve activity) test showed no increment of nerve firing on tilt and I had high levels of compensatory plasma adrenaline secretions. I have no increase in noradrenaline release on tilt.

Normal adrenaline levels are 50 or under, mine were 115 supine and 212 on tilt, therefore explaining the tachycardia, anxiety, shakiness etc. I was told that because of the faulty MSNA I have blood pooling in my legs and abdomen, which explains the brain fog, memory problems etc.

I will be in touch with my specialist next week, but in the meantime, I am just wondering...

If I had blood pooling (and enough pooling to cause brain fog etc), wouldnt my BP be low? I know with POTS it is possible to have brain fog etc with normal or even high BP due to carotid constriction, but since I dont have POTS, how does this work for me? My usual BP these days is 108/78.

Thanks.

[all4family]

Hi,

I don't know that answers to your questions but wanted to say congratulations on reieving a dignoses, and getting some anwers. I am just curious also when I was diagnosed I was told I have Orthostatic Intolerance, but the doctor also gave me books on POTS. Did your doctor tell you you don't have POTS? Take care, and I am happy you are getting some good answers.

Suzy

[bizbiz]

Hi Suzy,

Yes, he specifically said I do not have POTS. He told me my tachycardia is a reaction to the high levels of adrenaline, and that once the adrenaline levels drop so will the heart rate.

[ramakentesh]

Interesting. Patients with what you have would be still classified as having POTS in some centres. That being said, MSNA withdrawal and low norepinephrine release is probably easier to treat than POTS.

I have similar symptoms to what you described but for me I definately have POTS and my Norepinephrine levels are quite high as is my nerve activity.

If my guess is correct at your next visit there may be mention made to a medication called Droxydopa.

[erikainorlando]

I am so impressed. Can I ask what type of doctor did this testing? I had a TTT and they (he, my EP at the time) just watched my hr go from 80 to 150 and said...POTS. There was no blood test etc....

Was it done at at an autonomic ns site or somthing? Thanks!! Erika

[ana_22]

hi!

great dr it seems

just a question, did you have your blood drawn during the tilt?

im just wondering about my owns tilt, which was just tilting me with a blood pressure cuff and those heart sticky things stuck on my chest. i dont think they would have been able to get that info from my tilt!

[potsgirl]

I would also like to know where you had this testing done. I had the same experience with 'yup, you're positive' but that was it. How did you get the additional information? Plus, my neuro said I didn't meet the definition for POTS but had severe orthostatic hypotension, like you....

Thanks!

jana

[bizbiz]

Wow - I was always under the impression that with every TTT done on anyone they would be checking things like NA and ADR levels and MSNA.

To answer the questions - yes, I got bloods drawn at each level of the tilt. My specialist then went over the results with me, and gave me a copy at the end of the appointment. My specialist is a cardiologist and medical scientist who also does reaserch into illnesses such as dys. The test was done at a large hospital.

ETA - Sorry, but I forgot to mention that I am from Australia.

[ramakentesh]

MSNA is not routinely checked in most TTT, infact its relevance as a diagnostic tool is not accepted by all specialists.

In some specialist centres, increased MSNA firing rate would only be indicative of the type of POTS being considered hyperadrenergic.

Your specialist believes otherwise based on his contention that POTS is caused by hyperactivity of the sympathetic nervous system that manifests as POTS under orthostatic stress.

If you read the literature on POTS published by the medicos from Toledo, Vandy, Mayo and Stewart et al and the Baker Institute you will find that there are significantly differing views on the cause of POTS and thus the correct classification and testing criteria.

However, there are some significant inroads being made in america that suggest that increased sympathetic activity is only part of the problem. Time will tell.

[bizbiz]

So rama are you saying that if I was to be seen somewhere else (say Vandy for example) that I still might have been diagnosed with POTS? But that hyperadrenergic POTS would have been ruled out because of the decreased MSNA firing rate?

I am only learning about all this now but it seems to me that whether you have the hyperadrenergic type POTS, plain vanilla POTS or just good old OI, symptoms are pretty much the same? Infact, from reading everyones posts on this forum, before I got a diagnosis I was guessing I had the hyperadrenergic type POTS.

You wrote previously that MSNA withdrawl and low norepinephrine release might be easier to treat than POTS. Would you mind explaining to me why / how? Sorry, like I said - I'm new to all this and still learning.

[ramakentesh]

I think Vandy would agree with the findings of your tilt. If you had gone to see other doctors in POTS - perhaps Toledo as an example (Blair Grubb) im not sure your MSNA would have been measured.

What I am trying to say is that I believe that other research bodies would incorporate most patients that had an elevated postural heart rate. Pooling in the legs and reduced MSNA firing rate may not exclude them at these other research bodies.

Droxydopa has been quite successful in patients with chronic neurally mediated hypotension and impaired norepinephrine release.