Treatment options for Dysautonomia

Hello. I have Sjogren’s Syndrome, which has gone extraglandular to cause a range of neurological issues, mouth and throat, and other symptoms. POTS and Dysautonomia can apparently also manifest. Below is a link which has some newly posted resources on both.
https://www.sjogrensadvocate.com/dysautonomia-pots

Oh, my goodness, Athenalee, this is SO helpful!
Thank you so much for posting this!
If it wasn't even really meant for me, I am still very grateful for the help and will use it!
It's a joy to have people like you who help each other!
I wish you all the best in this!

Not to sound discouraging, because I have found a lot of helpful advice for my son's undiagnosed issues here, but after beginning the process to be seen at Mayo, I was told it would be a year wait. My son is 17. I do not want to wait a year to get him help, but we are still on the list. Best to you : )

@cdhouns Hello, I’ve been thinking of you and your daughter and just wondered if you have learned anything new. If you don’t mind sharing, can you tell us how both of you are doing?

I was diagnosed in April of 2020. I started having very strange and dehabilitating episodes in December 2019 after my husband and I caught what the doctors were labeling a unknown respiratory virus, but we believe it that time it was covid-19. We had all the symptoms of it.

Since then I've had debilitating symptoms from visual disturbances to pins and needles throughout my body to muscle twitching to racing pounding heart to numbness, and an overall sensory from head to toe shut down in short circuiting of my entire body.

The episodes I suffer with started out as once per week episodes yet now seem to occur on a daily basis. These episodes have no trigger that I can figure out either.

I've had every test done you can think of yet all come back normal. I've seen several cardiologist (who diagnosed me with Dysautonomia) and several neurologist, endocrinologist and gastrologist etc yet none of them can pinpoint another disease, virus etc.

All tests come back normal YET I feel SOOOO SICK inside. It's horrible.

What I dislike the most is these sensory shift feelings I get, where my sensory my feeling of spatial where I'm at it's like a sensory overload from head to toe changes and I feel so uncomfortable I just can't explain it but it's like a full body sensory malfunction along with the racing heart and the visual disturbances and the bowel issues where I have to go to the bathroom right away and the pins and needles in my extremities and the numbness.

It's awful so all these doctors have now referred me to the Mayo clinic in Jacksonville and they have me on an over 1 year wait list to be seen. This is an absolute nightmare.

And what makes absolutely no sense when I ask all these specialist doctors will you say I have dysautonomia yet I do not fit into the any of the 15 categories that fall under this disease.

There are 15 categories for dysautonomia yet I do not fit into any of them. No one can answer then what type of dysautonomia I have if I do not fit into the 15 categories that every single medical site list?

After almost 2 years of suffering with what my cardiology believes is dysautonomia, All my other specialists from neurologist to endocrinologist to other cardiologists have referred me to the Mayo clinic in Jacksonville and they called me two weeks ago and said that I am on a more than one year waiting list. This is absolutely insane that someone who suffers every single day and cannot even get a job because of my disabilities with this disease they say I have yet I have to wait over one year to be seen by a doctor at Mayo clinic. This is horrible. What a nightmare

I never would have thought in my worst nightmare that our medical system would be this disconnected from people who have these symptoms that they really have no idea what to do but to either label it all these symptoms as anxiety or they send you off to doctors at the Mayo clinic when they fully know there's over a 1-year waiting list as if we can suffer another one full year waiting for some kind of help. I never ever thought that how advanced America seemed to be in my mind that it's so falling short when it regards to medical care and trying to get a diagnosis without waiting 10 years. And then when they finally do diagnose you they say well it's too late the disease is progressed too far you should have come sooner. How can you come sooner when it takes 6 months to get in as a first time patient to see a specialist and then every test is space 3 or 4 weeks apart and then when they can't figure it out they refer you to somebody else and that's another 6 months wait as a first time patient to get in to see that doctor, and then they can't figure it out so they refer you to Mayo clinic and that's a 1-year wait. By the time you finally find out what's wrong with you it could be too far advanced. This is just unbelievable that I'm talking about America regarding this matter.

I have been diagnosed with dysautonomia and my husband has been diagnosed with vasovagal syndrome. Anytime he gets dehydrated or he overworks himself or becomes too stressed he goes into a full fainting with convulsions. It looks like an epileptic seizure but it is not it is called fainting with convulsions and I've witnessed 17 of them and it's horrifying to witness. But the heart doctor said many people have this vasovagal reaction that causes them to faint anytime they're stressed or full of anxiety or worry or if they get even slightly dehydrated or they overwork themselves etc it can cause the vasovagal nerve to react and cause them to faint. I have even worse symptoms with my dysautonomia so between the both of us we're just in really bad shape at the age of 61 we're both looking out for each other at this point and I am on and over one year waiting list to go to the Mayo clinic which I find is absolutely horrifying to be on a one-year wait list.

Joanne, golly, your life is hugely disrupted by all of these unexplained symptoms and it’s understandable to be so frustrated after countless visits to specialists and still no answers. I’m sorry you’re having to go through all of this…I can’t even imagine. And sadly, yes, because there are millions of people annually trying to get into Mayo Clinic and only so many slots open, the demand is out reaching the availability of appointments. You’re not being dismissed so don’t lose hope. Keep trying because there are always cancellations and schedule changes.

But you just said sometime in your first paragraph that caught my eye. About possibly having Covid late Dec 2019.
Were you ever tested to see if you have Covid 19 Antibodies?

With the timing on all of these symptoms you could possibly be a Covid Longhauler. A lot of your symptoms have been presented by members who’ve had Covid and are suffering unexplained illnesses such as neuropathy, lung issues, cardiac, optic issues, etc.

Here’s a link to the group if you’ve not already visited. If you’ve already done so, then I apologize for missing that in your earlier discussions. It might be worth exploring and getting tested for covid antibodies. There are post-covid recovery clinics for Long haulers. Just a thought.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/

@joannemm30809 i can only imagine how difficult it must be for you. It’s like you’re stuck between a rock and a hard place. Please don’t give up, you will find help! Becky

Have you tried any of the Mayo care clinic hospitals? There are 3 in Florida https://mayoclinic.org/about-mayo-clinic/care-network/members
You might also try googling “medical centers of excellence’