This is an informative website on Dsyautonomia:
thedysautonomiaproject.org/...
Dysautonomia (dis-auto-NO-mia) is a term used to describe any disorder of the autonomic nervous system (ANS). This article covers a broad range of topics including symptoms, types of dysautonomias, who is affected, and treatments.
I have also found this video with relates to long covid too, which is really informative (currently listening to):
I definitely have some symptoms of Dysautonomia, it commonly goes had in hand with Ehlers Danlos. I have trouble regulating my temperature and I can get excess sweating, I take medication for it in the summer. My pupils are slow to adjust to changing light. I have digestive motility issues and have to eat little and often.
And I've never been able to stand still for long without feeling faint and weak. I see my private neuro in 3 weeks and intend to ask if Dysautonomia is contributing to or causing my balance issues.
Yes I notice that was on the list of Common coexisting conditions. Think balance issues is common with Dysautonomia and associated to POTS.
Make sure you have your list of questions ready to ask, esp if you have had to go private.
Radical treatment for dysautonomia ..USA
TVAM (Transvascular Autonomic Modulation) is an endovascular procedure in which a catheter is inserted via a small incision and threaded up into the jugular vein. A balloon is then inflated that stretches the vein. While the balloon is inflated, manual compression is applied over the the balloon. This maximizes the physical energy delivered to the autonomic nerve fibers that travel within the outer tissues of the jugular vein. By stimulating the nerve fibers, we are able to reinvigorate the ANS (autonomic nervous system) by improving communication between the organs and the brain. Patients respond with relief from cognitive impairment (brain fog), chronic fatigue, waking headaches, thermal intolerance, bladder/bowel dysfunction, and other debilitating symptoms of autonomic dysfunction.
Have you found anything else that helps with the digestive motility? I have lots of air bubbling up on my hyperactive side esp when I exercise. Eating less can help, but don't want to lose any more weight. I too am affected by temperature ..body shakes madly in hot rooms ..which is unfortunately the case in medical settings.
I found this on motility disorders:
buoyhealth.com/learn/unders...
And this article:
verywellhealth.com/what-is-...
Or this "Bubble Guts":
For those affected by POTS, watching the podcasts of Sanjay Gupta, a cardiologist in York may be of some help . He mentions not being able to stand for long as one of the symptoms he encounters in his patients. e.gyoutube.com/watch?v=d7mY4hM...
Hi Shimmyaway, put above as new post 
The link below gives a comprehensive idea of how dysautonomia can be assessed and treated.. anybody experienced anything so thorough as part of their FND assessment /treatment?
A snippet of an article regarding compression that may help:
People with dysautonomia tend to have a harder time with regulating their blood pressure and/or heart rate. Lightheadedness may happen because there just isn’t enough blood flow to the brain.
Compression wear may help this by physically helping the blood flow to the brain by reducing pooling in the legs or the torso.
..and according to the video, compression around the abdominal area is the most effective .. can you still buy corsets then??
Abdominal binders may help with blood pressure regulation better than socks. May get through healthcare provider, for example:
Thanks for this .. I have tried a few things, but no improvement. The Gaviscon from the GP is a non starter ..it' got to be the nerves, as they make my chest and stomach shake, ..and then come the bubbles! I think the amount of air is also responsible for the awful noises I make when I react to electronic noises. They are most definitely not stomach noises ..more like growls ..and they scare people, esp on the phone, when the caller can't see 'the little old lady' they are coming from! What a condition this is!
Have you checked the side effects of any medication you are taking?
Not on any meds for the FND. Heart meds not causing side effects. I will just carry on experimenting with my diet ..currently 'going liquid." As suggested I have put the POTS info under a separate post. The doctor sounds so passionate about his POTS work, and annoyed that others are not! We need more like him.
An extract from an email:
POTS and Dysautonomia are NOT FND—AND people with FND might have POTS or dysautonomia (and people with POTS might have FND)
And people with FND might have autonomic symptoms that are not POTS or dysautonomia.
No wonder people can get confused.
The main message is, if you are getting little or no help from your diagnosis of FND make sure you are getting support for POTS or Dysautonomia. I just received an article on choosing the right compression aid, so will share highlights separately (once read).
The divide between physical and mental health is a problem here, as FND patients are sent down the 'mental health route' .. so talking, cbt etc and symptoms indicative of some degree of dysautonomia are left unaddress ed by mental health staff ,, and who else will look at them ?..maybe a cardiologist for POTS , but otherwise ? Roll on the multi- disciplinary team.
OT and physio referrals should be standard. Its the lack of support that leads to depression and mental health issues, as well as some being given medication that they don't need which may bring about more unwelcome symptoms. CBT alone doesn't work.
We can but hope for the gap between what 'should be' and what currently ' is' to be bridged asap. Being expected to treat a condition classed as 'neuropsychiatric' is a definite deterrent to medics working in physical medicine, as many on here have experienced.
Think its classed as neuro psycho-social. Many don't need psychiatric help (unless extreme circumstances), more psychology, looking at the whole picture. As anxiety/depression are often common whether pre or post FND, its important to pace yourself (love yourself), in some extent lower your expectations (because maybe at the moment they are unrealistic) to be able to achieve your goals.
You don't need to reach for the stars, maybe be intent on getting up another step up the ladder and if you fall down a step thats okay, because tomorrow you may go up another two steps.
Also, equally important don't isolate yourself from your social connections (you may have to interact differently, maybe a quiet meal with friends/family, instead of the dreaded hangovers, due to symptoms. Embrace all the love around you, where the simple thing of giving or receiving a hug is huge.
FND Questions?
Specialist in FND
FND in the UK
FND?
