COVID-19 vaccinations – FD patient response

Dear patients and families,

The Dysautonomia Center is in alignment with the CDC guidelines and recommends the COVID-19 vaccination for FD patients and their family members. Over 22 FD patients have received the COVID-19 vaccination and reported no serious adverse events. Patients may experience some side effects, which are normal signs that your body is building protection. Common side effects include pain/swelling at the injection site, low-grade fevers, chills, headaches, or tiredness. Some patients endorsed feeling “more crisis-y” after the second vaccine. Side effects should completely resolve in a few days.

In general, we do not recommend pre-medicating PRIOR to the vaccination, but acetaminophen and ibuprofen can be given AFTER for any pain or discomfort. You can also take autonomic crisis medication before/after for any signs of crisis.

To reduce pain or discomfort where you got the shot you can apply a clean, cool wet washcloth over the area. You can also use or exercise your arm.

To reduce discomfort from fever – take plenty of fluids and dress lightly.

Remember, you will need 2 COVID-19 shots in order for them to work. Get the second shot, even if you have side effects after the first one- unless a doctor advises against the second shot.

It will take time for your body to build protection. COVID-19 vaccines that require 2 shots may not protect you until a week or two after the second shot.

It is important that everyone to continue to use all the tools available to stop this pandemic as we learn more about how the COVID-19 vaccines work in real world conditions. Continue to cover your mouth and nose with a mask while around others, stay at least 6 weeks away from others, avoid crowds, and wash your hands often.

While we continue to advocate for the safety of our patients and their caregivers, patient eligibility is being determined by the NYU task force, and you will be notified when you are eligible to schedule your appointment via MyChart (more information at: 

Patients should strongly consider local options for the vaccine, since Eligibility for NYU appointments could take much longer. 

At the same time, you can also determine your eligibility and scheduling through the NYC app:

You may follow links to the DOH websites for NY, NJ, and CT for eligibility questionnaires and other vaccine appointment opportunities.

Thank you,

Dysautonomia Center