Gold standard to diagnose POTS / OI / NMH?

I will soon see a neurologist with knowledge of dysautonomia. A tilt table test will be performed but i find that a bit shortcoming for a proper diagnosis because there are several subtypes and causes for this disease.

What is the absolute golden standard to diagnose the type of dysautonomia besides positive or negative TTT?
Like measuring noradrenaline pre and post TTT? Measurement of other catecholamines? Measurement of blood volume?

Are there any guidelines?
I'm bored of guessing and want to do a complete diagnostic workup.

My symptoms:
- Feeling sick, restless and even more fatigued when standing for a longer period of time. When i lay down i get back to my ME-self.
- Severe heat intolerance, this is the biggest trigger. It's been quite hot today so i'm floored, my veins are badly dilated and hurt. Because of this i can't take a warm bath or shower.
- Heart rate jumps 30+ BPM from a horizontal to vertical position.
- I get breathing problems, like i have to force myself to breathe when the dysautonomia is at its worst.

I'm so sick of this, i wished it was winter already!

Thanks for any advice.

 

I also have the same symptoms and definitely have POTS and bad OI.

I'm getting testing soon at an autonomic unit so 24 hour BP monitoring, tilt table with various stressors e.g cold/heat/eating/deep breathing and hyperventilation/recumbent exercise etc to see how the autonomic nervous system responds. They also check catecholamine levels during the tilt.

I assume they try and determine the cause of the POTS. But also appreciate that if they can't, they may just give me the diagnosis and trial treatment for symptomatic relief.

For me this is difficult as I'm not sure what their working knowledge of ME is and without knowing what's driving the POTS they won't be able to cure it. I'm hoping they won't focus on the whole deconditioning concept. The treatment approach for a patient with POTS should be different from someone with both ME and POTS. But if they focus wholly on the POTS and think CBT and GET are the way forward for the ME then I'll get nowhere. So I'm apprehensive of what "recommendations" I'll get.

My ME doc said the POTS is just secondary to the ME (as it is in many other diseases) and will resolve/lessen once the ME is appropriately managed. Nancy Klimas once said that the autonomic nervous system first tanks and takes the immune system with it.

So my theory is if POTS medication helps take the stress off the autonomic nervous system on exertion maybe the immune system and downstream inflammatory response will be lessened so maybe less PEM? I may be wrong but interesting to hear what people think who have gone through this.

 

Wow, that's an impressive list of tests to diagnose your autonomic dysfunction! I guess you are from the US? In my country I doubt they even do a quarter of the tests you mentioned.

 

Nope in the UK! The epicentre of the BPS brigade hence my apprehension.

 

I like to follow all OI threads. Good luck with your neurology appointment(s) - are you in the UK?

Just for your information, my experience of tilt table test, see
https://www.s4me.info/threads/orthostatic-intolerance-in-pwme-pots-nmh.1976/

I really hope you have a better experience than I did.

 

I replied to this cross-post in the other forum but have copied my response here too for the benefit of others:


Not sure if he was working from specific guidelines but my electrophysiologist's protocol was:

12 Lead ECG
Echocardiogram
7-day holter monitor
24hr BP monitor
Tilt Table Test with beat-to-beat monitoring (AM, before fluids/food)
24hr urine collection for volume & sodium
Cardiopulmonary Exercise Test

The urine collection was a poor man's blood volume test & reference for salt intake.

An OI-literate endocrinologist colleague also ran a battery of blood tests, with plasma aldosterone & renin measurements most related to OI I believe.

There is plenty more that could be done but I imagine either investigatory limitations and/or treatment limitations were in effect as this was all done on NHS. I think unless you have a very significant symptom leaning that demands treatment most doctors will assume that confirming related issues like small fibre neuropathy, low blood volume etc. are not going to be helpful - unless you are clearly very broken in an identifiable way you'll just get the same basic POTS advice & treatment.

 

Thank you for all your replies and suggestions. I will need a few days to digest all the information and create a document for my neurologist.

 

I'm still digesting all the info and research between dysautonomia, Sjogren syndrome and MCAS. All your input has been very useful, but unfortunately most of the advanced testing isn't done in my country.

I've seen my GP today, and i think he has read the letter i wrote him last time because without any questioning he has given me all the referrals to specialists that i want to see, 6 in total! Not just some run of the mill doctors.
He now clearly knows i'm well informed, "you've done your homework", yeah no shit sherlock, that's all i've been doing the past 6 years.
It's going to be a busy year but finally things are moving again.

 

So happy for you @Thinktank!