PPPD and vestibular disorders

[Lady4]

Did you know that many of the underlying issues in dizziness are related to the autonomic nervous system? Or that sleep, diet and stress can play a role?

Re-actives team program centres on an holistic approach to dizziness; an approach that includes looking at your movement, muscular factors, lifestyle, brain-body connection and your nervous system.

Their programme consists of:

Physical therapy

Occupational therapy with a focus on lifestyle intervention

Neuropsychology

Yoga therapy

Fitness and personal training

Coordination with medical and psychological professionals

For many of us sadly going over to California to get this program of 5-12 weeks isn't an option but I am posted this because some of the list above may help.

I will see if I can find any of their Instagram posts of real life results to post. Unfortunately I didn't get round watching one or two of the Autotomic Classes before my membership expired but will check my downloads for any links to original sources/articles that may help others.

nationaldizzyandbalancecent... ​

vestibular.org/understandin....

facebook.com/share/r/CP1Zj9...

And don't forget to breathe (exercise to lower blood pressure)*:

facebook.com/share/r/ndzwqn...

* if you haven't got lower blood pressure and been diagnosed with Orthostatic Hypotension.

I also found this link with a few suggestions (this mentions diet, compression etc):

facebook.com/share/v/kN3P3t...

[210272]

Let's hope they've read all the published papers about PPPD, including the one about patients wanting the terminology changed because they found the nomenclature confusing and thought that simplifying it could, potentially, improve outcomes. I still have no idea why it's considered to be a subset of FND and do not think it is appropriate for people with PPPD to have a DSM diagnosis.

[Lady4 in reply to 210272]

Who originally put it as a subset as I know Re-Active got it from some reputable source.

[210272 in reply to Lady4]

I don't know but possibly Jon Stone (who is considered a reputable source by some but not by others, eg people with M.E.). However I don't think there was any consultation with patients about this and many of them are not aware that they've been put in this subset or even that the subset exists. Stone tells his patients with Vestibular Migraine that pppd is the brain's response to it and it can be worse in 'fake' environments like supermarkets but other professionals say their patients with VM don't get the symptoms of pppd (PPPD being an umbrella term). The last ENT I spoke to about it says he won't diagnose it unless he has to because 'it could stop other doctors from looking for other things' and some surgically trained ENTs in America are giving this diagnosis for the sole purpose of discouraging further contact from their patients. 'Hysteria' has been mentioned in connection with PPPD and that's Stone's special area of interest and he over promotes PPPD in the context of Havana Syndrome. One of my contacts thinks it's a descriptor of symptoms but not a diagnosis and for some patients it has become the diagnosis they dread. One of the many tweets I was sent about it was from Prof O'Leary who wrote 'FND ed is terribly reckless, so practice is reckless' and I thought her rapid response to the FND is a Feminist Issue paper was great, especially regarding misdiagnoses.

[Shimmyaway]

Whilst not being affected by PPPD, and unsure of its place within an FND diagnosis, I can say that the yoga offered at the site below, which includes purposeful controlled shaking, and exercises for the nervous system is beneficial for energy release, and relaxation within the body, leading to less uncontrolled shaking ...,such as in the night. The teacher calls it 'medicine for the nervous system'. I am impressed with her (Rebekah)

bodyillumination.com/

[Lady4 in reply to Shimmyaway]

I know Re-Active did Yoga classes for FND but I never participated in any exercise ones just a few re-centre ones which were really good.

[Lady4 in reply to Shimmyaway]

The Yin Yoga Fusion looks good (found it on utube).