1. < Autoimmune Diseases

Treatment options for Dysautonomia

Posted by Neeci @neeci, May 5, 2016

In 2011 I was diagnosed with dysautonomia. It is not POTS, but another form. I would love to converse with others to find out their form of treatment. I've been told there is no cure...but I have hope.

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marye2 | @marye2 | Oct 31, 2021
In reply to @joannemm30809 "It's very frustrating and extremely depressing to know there is no cure or real remedy for..." + (show)
@joannemm30809

It's very frustrating and extremely depressing to know there is no cure or real remedy for Dysautonomia or autonomic nervous system flairups.

I'm soooo fed up, exhausted and disgusted with the lack of help from so many doctors and specialists.

I'm tired of it. Tired of going to doctor after doctor over two years now with NO hope or remedies for this nightmare.

Debilitating and wide ranging symptoms that destroy ones daily life yet no cure and many doctors are clueless.

Mayo Clinics one year backlog is totally depressing too.

All of this is a nightmare and what makes it worse is that far too many doctors, even specialists in cardio, neurologist, endocrinologist etc have no clue.

I do have arthritis and a rheumatologist is only doctor I have not seen except for one time when he said I have arthritis in my knees, feet, fingers and my neck.

Racing heart, pulse rate and BP fluctuations, visual disturbances, muscle twitches, bowel urgencies, heat intolerance, constant ringing in my ears etc. It's all just insane.

Does anybody have visual disturbances where during these episodes you sometimes feel like you're going to faint but you don't, your vision just feels that way it changes. Also I get strange visual issues where it seems like my eyes can't keep up with the movements around me like my eyes are trying to catch up to what I'm looking at. I've been to ophthalmologists, eye surgeons, retina specialist etc and they say everything's normal. The many MRIs I've had of my brain and blood test and cardio test and every endocrinologist test you can think of, x-rays of my back my kidneys, every test you can think of yet everything comes back normal.None of this makes sense

Jump to this post

Have a look at Sensory Integration (we went through occupational therapy), which helps temper your vagal system. Swinging, bike riding, alternation of left/right like in water exercise and other movements can improve your response to visual triggers. There are moves for tinnitis as well.( https://www.youtube.com/watch?v=kR3TWHyvEBk ) EFT tapping can also help you get centered so things calm down. Request labs for TSH, etc to see if anything is going on that would cause sudden heat; I use a cook pack against the back of my neck as needed.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 31, 2021
In reply to @joannemm30809 "It's very frustrating and extremely depressing to know there is no cure or real remedy for..." + (show)
@joannemm30809

It's very frustrating and extremely depressing to know there is no cure or real remedy for Dysautonomia or autonomic nervous system flairups.

I'm soooo fed up, exhausted and disgusted with the lack of help from so many doctors and specialists.

I'm tired of it. Tired of going to doctor after doctor over two years now with NO hope or remedies for this nightmare.

Debilitating and wide ranging symptoms that destroy ones daily life yet no cure and many doctors are clueless.

Mayo Clinics one year backlog is totally depressing too.

All of this is a nightmare and what makes it worse is that far too many doctors, even specialists in cardio, neurologist, endocrinologist etc have no clue.

I do have arthritis and a rheumatologist is only doctor I have not seen except for one time when he said I have arthritis in my knees, feet, fingers and my neck.

Racing heart, pulse rate and BP fluctuations, visual disturbances, muscle twitches, bowel urgencies, heat intolerance, constant ringing in my ears etc. It's all just insane.

Does anybody have visual disturbances where during these episodes you sometimes feel like you're going to faint but you don't, your vision just feels that way it changes. Also I get strange visual issues where it seems like my eyes can't keep up with the movements around me like my eyes are trying to catch up to what I'm looking at. I've been to ophthalmologists, eye surgeons, retina specialist etc and they say everything's normal. The many MRIs I've had of my brain and blood test and cardio test and every endocrinologist test you can think of, x-rays of my back my kidneys, every test you can think of yet everything comes back normal.None of this makes sense

Jump to this post

@joannemm30809 I so know what you’re saying. There are days, like today, when i can’t believe my autoimmune disease will never go away and I’m so tired of juggling everything. On good days ,i know i can do something positive, if the good days would just last! Joanne, have you found a regional or university medical center ? Doctors there are more up on research and solving problems.
I recently found this article.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
There is also help a NORD, the National Organization for Rare Diseases

Will you please look at these and see if you can find something!

REPLY
abrown2 | @abrown2 | Nov 1, 2021
In reply to @becsbuddy "@abrown2 oh, I’m so glad your son went to Children’s Hospital. Did he feel comfortable with..." + (show)
@becsbuddy

@abrown2 oh, I’m so glad your son went to Children’s Hospital. Did he feel comfortable with the doctors and the things they were telling him?
Sending best wishes and hoping you’ll keep us posted.

Jump to this post

Yes, the trip to CHOP was very positive. Things may be moving in a diagnostic direction thanks to a variety of phone calls to a specialist at Hopkins, tests run at home, along with requests from CHOP. We may finally be on our way. It looks like some sort of Mast Cell syndrome is the culprit. Nobody mentioned this until the Dr. from Hopkins. Still testing to confirm.🤞. Just getting a name and path to managing this is what we have been looking for all these years. I was told directly by Mayo that they do not treat this condition. thank you for your care. It means a lot ❤️🙂

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 1, 2021
In reply to @abrown2 "Yes, the trip to CHOP was very positive. Things may be moving in a diagnostic direction..." + (show)
@abrown2

Yes, the trip to CHOP was very positive. Things may be moving in a diagnostic direction thanks to a variety of phone calls to a specialist at Hopkins, tests run at home, along with requests from CHOP. We may finally be on our way. It looks like some sort of Mast Cell syndrome is the culprit. Nobody mentioned this until the Dr. from Hopkins. Still testing to confirm.🤞. Just getting a name and path to managing this is what we have been looking for all these years. I was told directly by Mayo that they do not treat this condition. thank you for your care. It means a lot ❤️🙂

Jump to this post

@abrown2 Your persistence has really paid off! Good job, Mom! Are you close enough to Children’s Hospital or Johns Hopkins for any further appointments?

REPLY
abrown2 | @abrown2 | Nov 2, 2021

We are not totally out of the woods yet, but yes, it does seem like this is the answer. thank you for your concern. We are near our local children's hospital, which is very good, but not the one in Philly. Our children's just ran out of ideas and did not know what else to do. Maybe now that they have an idea to pursue they can take the lead. My son has a few appointments to confirm the diagnosis and then we move forward with a management/ treatment plan. This definitely has been a team effort. It is amazing that after years of searching, nobody even mentioned this condition until recently. I guess we will all learn a lot about it through this experience. : )

REPLY
lidiana | @lidiana | Oct 3, 2022

Hello 👋🏻 I have been diagnosed so far with POTS without deeper understanding why. But they have prescribed me Mestinon commonly used for Myasthenia Gravis and studies have shown to help with POTS patients according to the Mayo neurologist. I’m still waiting in biopsy to further under the etiology of my POTS or at least the type of POTS. I have a lot of other gastric and breathing issues. I had general anesthesia for a cystoscopy (bladder issues) today and I had of what they were referring “dyskinesia” episode looking moment in recovery. I had to stay longer in observation because of that. I have been having twitching and spasm and other tremors even on my throat and head but this was totally different wiper motion of my head.
I’m still hopeful that I’ll get the help that I need. Blessings and best healing always ❤️‍🩹

REPLY
lidiana | @lidiana | Oct 3, 2022
In reply to @joannemm30809 "It's very frustrating and extremely depressing to know there is no cure or real remedy for..." + (show)
@joannemm30809

It's very frustrating and extremely depressing to know there is no cure or real remedy for Dysautonomia or autonomic nervous system flairups.

I'm soooo fed up, exhausted and disgusted with the lack of help from so many doctors and specialists.

I'm tired of it. Tired of going to doctor after doctor over two years now with NO hope or remedies for this nightmare.

Debilitating and wide ranging symptoms that destroy ones daily life yet no cure and many doctors are clueless.

Mayo Clinics one year backlog is totally depressing too.

All of this is a nightmare and what makes it worse is that far too many doctors, even specialists in cardio, neurologist, endocrinologist etc have no clue.

I do have arthritis and a rheumatologist is only doctor I have not seen except for one time when he said I have arthritis in my knees, feet, fingers and my neck.

Racing heart, pulse rate and BP fluctuations, visual disturbances, muscle twitches, bowel urgencies, heat intolerance, constant ringing in my ears etc. It's all just insane.

Does anybody have visual disturbances where during these episodes you sometimes feel like you're going to faint but you don't, your vision just feels that way it changes. Also I get strange visual issues where it seems like my eyes can't keep up with the movements around me like my eyes are trying to catch up to what I'm looking at. I've been to ophthalmologists, eye surgeons, retina specialist etc and they say everything's normal. The many MRIs I've had of my brain and blood test and cardio test and every endocrinologist test you can think of, x-rays of my back my kidneys, every test you can think of yet everything comes back normal.None of this makes sense

Jump to this post

I totally get you! I haven’t gone to the ophthalmologist. I have bluish/gray color around my sclera wish some say it could be related to hEDS but I haven’t been diagnosed with that I’m so far HSD and POTS (they haven’t told me what type or classification). I’m not even sure what’s going on to this point. I’m searching second opinions and I’m waiting for a vascular surgeon to see if there’s any compression or MALS or anything like that causing this symptoms. The pre-syncope episodes are getting harder to deal and the gastrointestinal issues are out of control. I had a cystoscopy locally to check my bladder issues (incomplete voiding) and if my NET is back but everything looks normal just over vascular area that they took a biopsy. Have you had a muscle/nerve fiber biopsy? Or the serum blood test for dysautonomia? How did they diagnosed and under what category you fall in dysautonomia? I’m trying to get also biopsies because they give also more information about your connective tissue and nerves than just poking big nerves (EMG) and ignoring that there’s literally a lot more small nerves fibers. I’m trying to get to the etiology so I can treat it properly and avoiding the “well that’s all we can do”. Cuz it’s probably not until they have done all I just mentioned. I have been prescribed Mestinon that’s commonly used for Myasthenia Gravis, I need them to accurately diagnose me so than treating me is not throwing darts 🎯 in the dark. I don’t gamble with my health or ultimately my life. I had resorted to be very pro advocate for yourself and I had been dismissed multiple times (gaslighting is another story). Regardless, I’m hopeful that there’s good and willing doctors to help. For now I’ll be grateful and take one step at a time (literally 😅 💓📈)

Lots of blessings and smooth healing process ❤️‍🩹
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