Connect
← Return to Treatment options for Dysautonomia
Discussion
Treatment options for Dysautonomia
Autoimmune Diseases | Last Active: Oct 3, 2022 | Replies (47)Comment receiving replies
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
Replies to "It's very frustrating and extremely depressing to know there is no cure or real remedy for..."
@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!
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 ❤️🩹
Connect
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.