did anybody prove their ans is not working properly?

[valentinelynx]

I live where it routinely gets over 100 in the summer and I barely sweat at all.

Hmm. Trade ya! I sweat buckets in the heat, or even without much heat. I make my own heat often enough (hot flashes are miserable). At work it can be problematic, when I start sweating and soak my hair under the OR cap. Yuck.

 

[Rossy191276]

In my experience the ANS problems in ME seem to be serving the protective function of conserving energy...I have quite severe ANS issues and during crashes I get severe pots, inability to handle temperature changes, trouble with digestion, shallow breathing, etc etc...!these all to me seem to be occurring to save energy and do so severely the greater the crash

 

[Paintmyturquoise]

Not sure if this is also something you might be interested in

http://forums.phoenixrising.me/inde...f-vagus-nerve-parasympathetic-response.50743/

 

[Paintmyturquoise]

Hmm. Trade ya! I sweat buckets in the heat, or even without much heat. I make my own heat often enough (hot flashes are miserable). At work it can be problematic, when I start sweating and soak my hair under the OR cap. Yuck.

As a teen I had a noticeable absence of sweating. Since being severe/bedbound I have had excessive sweating, intially with nightsweats and now with talking to people, I overheat and it runs down my legs and arms

It's possible you have hyperadrenergic POTS based on this.

Certain types of neuropathies can also cause your sweat glands to produce more sweat than normal. This is part of what the QSART test measures.

This worries me :/

 

[helperofearth123]

I had POTS proven by a tilt table test a few years ago. I tried the treatments, wearing compression stockings, salt loading, horizontal exercise, but nothing helped. Whats weird is sometimes I would try the 'poor mans tilt table test' at home and noticed the POTS had disappeared (heart rate no longer went up by over 30BPM upon standing) yet still felt just as bad. The only conclusion I can draw is that its only a minor part of my overall condition if it can come and go without me even feeling any different.

 

[kangaSue]

Have you had any autonomic testing done kangasue? And if so what and where? I have a neurologist appointment in Bris in Oct for dysautonomia/POTS and wondering what kinds of autonomic testing is possible for us. Not sure what to ask for.

I'm just a public hospital patient. My GI motility specialist requested only a Tilt Table Test to test autonomic function (because of gastroparesis and hypotension) but the internal review panel bumped it up to a full autonomic work-up to also include QSART, TST, Heart Rate Variability to Deep Breathing and Valsalva Manoeuvre through the RBH Neurology Dept.I don't know what was specified on the request form.

 

[kangaSue]

Very interesting, @kangaSue ! Is it antiganglionic acetylcholine receptor (AChR) antibody they test for?

Anti-ganglionic acetylcholine receptor (AChR) antibody can be an autoimmune reason for having Autonomic Neuropathy (Autoimmune Autonomic Ganglionopathy) but around 50% of cases are seronegative for this antibody so it can come down to a call by a doctor depending on what other antibodies are present e.g. GAD65, ANA, voltage-gated calcium channel or potassium channel Ab.

 

[kangaSue]

If you don't have pure autonomic failure 99 percent of doctors will not even entertain the idea of autonomic dysfunction me personally I know my ans is damaged and why waste my time proving it they can't treat it anyway people had this for thousands and thousands of years scientists can't touch the ans and the ans is the most important system in your health that's what they have to fix to cure real cfs/me

Sjogren's Syndrome is one of the more common things to have if you have stopped sweating but it can take up to ten years for the antibody to be detectable in blood tests. Dry eyes and mouth usually goes along with this too.

 

[kangaSue]

Sudomotor dysfunction in Autonomic Neuropathy can be anhidrosis/ hypohydrosis or hyperhydrosis which can affect just one side of the body or specific areas of the body or it can be a whole body thing so it can mimic hot flashes normally put down to hormonal imbalance or menopause too.

 

[purrsian]

I'm just a public hospital patient. My GI motility specialist requested only a Tilt Table Test to test autonomic function (because of gastroparesis and hypotension) but the internal review panel bumped it up to a full autonomic work-up to also include QSART, TST, Heart Rate Variability to Deep Breathing and Valsalva Manoeuvre through the RBH Neurology Dept.I don't know what was specified on the request form.

Thank you for the info kangasue, glad to know these are available here, I was worried we wouldn't have that much since the doctor who referred me to the tilt table test wasn't even sure we'd have that available at first!