does anyone experience these symptoms?

[DaisyDarenth0731]

Hi all, 

I'm hoping someone can help shed some light on my situation and whether or not I'd be on the right path to venture down a possible hEDS/ Dysautonomia diagnosis. 

Since I was about 10 years old (now 22), I experience pre syncope like auras lasting minutes to hours where my symptoms range from light headedness and dizziness to tachycardia, chest pain, palpatations, loss of vision (everything goes black), hearing impairment (everything sounds like I'm being spoken to through a stethoscope) and lose of motor control. Last year in 2023, I had my first full vasovagal syncope which resulted in a ED admission (good thing I work in a hospital  ). 

The above symptoms are my most pressing issues I would say and they have been explored in the past via halter monitors, anaemia testing, menstrual cycle investigations and referrals to doctors to investigate brain tumours and epilepsy with no luck in a diagnosis. 

These symptoms are very sporadic and I can go months without nothing to feeling it during a run or even while driving. 

Additional symptoms I present with that have led me down this path of Dysautonomia etc. include brain fog, sensitivity to temperatures, fatigue, change in appetite, no sexual arousal, exercise intolerance (unable to build any muscle strength and can experience lose of motor control etc. while exercising), GI issues (until recently unable to open bowels daily), transclucent / very pale skin, UTI and kidney infections without any symptoms, increased muscle tightness in back, quads and hips and a hyper mobility beighton score of 5/9. 

For years people have thought these symptoms are all in my head or stress related but I know my body and I know it's not any of that. So please if anyone has any insight, thanks in advance. 

[Sarah Tee]

@DaisyDarenth0731, has anyone done a poor man’s tilt table test?

This is a basic test to see whether your blood pressure or heart rate do anything abnormal under orthostatic stress.

Here are instructions:

https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

Orthostatic intolerance (OI) symptoms caused by dysautonomia often come and go.

You would need to do the testing while you are feeling symptomatic. You could also do it in the morning, as OI tends to be worse then.

Everything you’ve written could well be consistent with dysautonomia. Do you know of an autonomic specialist in your area?

A local Facebook group can be a good place to start to find one:

http://dysautonomiainternational.org/page.php?ID=24

And DINET has a list too:

https://www.dinet.org/physicians/

 

I’m sorry you haven’t had much help from doctors over the years. It must have been very hard to go through all of that at such a young age.

[Sarah Tee]

P.S. I don’t have EDS so didn’t comment on that, but other members do, and I’m sure they’ll be able to add some helpful responses. One very good thing about autonomic specialists is that they usually screen patients for common co-occurring conditions, such as EDS, MCAS and Sjogren’s syndrome.

[JaneEyre9]

It might help you to find a well-respected functional medicine MD.

I was sick for years with many of the symptoms you listed (after mold exposure in my childhood home). Even with an eventual diagnosis of dysautonomia/POTS, I continued to struggle and became disabled for years. Once I was seen by an MD in Cleveland Clinic Integrative Medicine, I was diagnosed with intestinal permeability (leaky gut) and was able to start healing with diet changes and supplements to correct my severe dysbiosis. As my gut healed, my symptoms decreased to the point where I went into remission. I also struggled with chronic/embedded UTI which required additional treatment alongside my gut healing.

It's a really hard road, and I hope this helps!

[bumpkin]

I would also recommend finding a functional medicine doctor, some even specialize in specific treatments and therapies for dysautonomia. 

I'd met an hEDS who was very sensitive to mold and other MCAS triggers (both dietary and environmental), had disabling gut issues, and the usual slew of dysautonomia symptoms, was in and out of the hospital having issues with various organ systems due to the hypermobility.. all sounds in line with what they reported experiencing. 

Driving has the orthostatic intolerance factor to it, but automobiles can also get moldy.. if driving is a trigger it might be worth using some of the cheaper gravity/agar test plates to rule out whether mold could be present/is potentially triggering symptoms while you're in the car. There's some good websites around on how to remediate vehicles if need be.