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DYSAUTONOMIA

This site is only for informational purposes. 

DYSAUTONOMIA FEELS LIKE...

‘...’  Dysautonomia Patient

WHAT IS DYSAUTONOMIA?

 

The Dysautonomia Project thoroughly describes Dysautonomia on their website.  click here for info

When looking for research articles, it can be helpful to search other conditions you have and Dysautonomia to see if they are related. If you are specifically concerned about the treatment, it can be helpful to search that specific treatment.  Check with your local library if the articles you need aren't free.  Google Scholar is helpful and has a lot of free resources.​

HELPFUL RESEARCH ARTICLES AND MEDICAL SITES

Research articles can be helpful and validating, but frequently there is a lack of research.

TREATMENT DYSAUTONOMIA

Exercise is often recommended to treat Dysautonomia, but it's easy to over do it.  Here are some tips!

Image by Liana Mikah

GETTING A DIAGNOSIS AND TREATMENT

If you think you have Dysautonomia, use this info to get to the right doctor or ask your primary care doctor to preform the tests.

Doctor Holding Patient's Hand
  • Many struggle for years to get a dysautonomia diagnosis and are instead told they have anxiety, even by cardiologists.  Since COVID, more practitioners know about dysautonomia, but still not enough.  There is now an increase in research and more awareness, but COVID Long Haulers are frustrated with the lack of treatment and awareness of dysautonomia.

  • Use the FB pages below to find a doctor in your area.  It's important you find a doctor familiar with dysautonomia, if not, they may tell you it's anxiety.  You may also try searching your state's name and Dysautonomia on FB to find more FB pages.  Some states also have pages for COVID Long Haulers that have recommendations for dysautonomia specialists in your area.  Currently, not a lot of doctors advertise that they treat dysautonomia, but this might be changing due to COVID Long Haulers.

  • Multiple specialists treat dysautonomia.  It is very difficult to find a dysautonomia specific doctor and if you do, there is probably a very long waiting list.  

IN THE NEWS

Many people share their stories because it was so difficult to get a diagnosis, even after Long COVID.

FACEBOOK GROUPS FOR DYSAUTONOMIA

It can be helpful to connect with others about their experiences.  You can ask about doctors in your state, how their treatment went, compare symptoms, and get support from others who understand what it's like to have Dysautonomia.

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  • Try to join groups with the most members to give you a larger sample size and a higher probability of finding someone with symptoms like yours. 

  

  • Remember that Facebook is public and follow the group rules. 

  

  • Go to this page for more helpful hints on using Facebook as a resource.

  • We've listed a few groups, but there are others.  Pick your favorite and disregard the others.  

  • Long Covid Groups specific to your state can also have helpful Dysautonomia resources

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