Welcome!

We invite you to participate in the 2020 Dysautonomia Project Patient Survey. The information gathered will help us spread hope to others through updated and improved research and education.

By completing this survey you agree to share your personal medical information with The Dysautonomia Project.

A handful of responses will be summarized and featured in an a 2020 educational blog post of patient stories. All information will be kept anonymous.

Thank you for your participation and support

TDP Patient Survey

First Name

Last Name

Address 1

Address 2

City *

State/Province

Country *

Zip

Date of Birth (MM/DD/YYYY *

Biological Sex *

Phone

1. Have you been diagnosed with a form of dysautonomia (any disorder of the autonomic nervous system)? *

If yes, what was the dysautonomia diagnosis?

2. Have you been diagnosed with any other co-existing conditions? (please list all diagnosies) *

3. At what age were you diagnosed with dysautonomia? *

4. How long did it take to get the dysautonomia diagnosis? # months/years *

5. By whom was the dysautonomia diagnosis made? *

6. Did anything happen which seemed to trigger or cause your dysautonomia? (viruses, trauma, surgery, etc.) *

If yes, please explain the trigger(s):

7. Please check any symptoms which you’ve experienced:

Difficulty standing for long periods of time
Nausea
Palpitations
Fainting
Difficulty maintaining body temperature
Abdominal pain
Diarrhea or constipation
Flushing (Face or other turns red/warm to touch)
Shortness of breath or difficulty breathing
Anxiety or depression
Weight gain/loss
Fatigue
Brain fog or mental clouding
Exercise intolerance
Abnormal sweat
Migraine headaches
Intermittent gastroparesis
Circulation issues
Difficulty urinating
Difficulty sleeping
Panic attacks
Lightheadedness
Parasthesias (Tingling, numbness)
Heat intolerance
Abnormal tears
Vomiting
Reflux
Chest discomfort
Difficulties with lights, sounds, touch or motion
Tinnitus (Ringing in the ears)
Other

If other, please explain:

8. In order, what are your top three most difficult symptoms from the list above?

First most difficult symptom please explain: *

Second most difficult symptom please explain: *

Third most difficult symptom please explain: *

9. Do your dysautonomia symptoms require the assistance of any medical aid or help (such as a cane, wheelchair, service dog, etc.) ? *

If yes, please explain the medical aids or help needed:

10. Have these symptoms impacted your ability to lead a normal life and do activities that most people do? *

If yes, please explain:

11. Are you able to go to school or work? *

12. Do you require accommodations for school or work? *

If yes, please explain the accommodations:

13A. Which non-pharmacological treatments have you tried?

Education (Efforts to educate myself and/or others about dysautonomia)
Exercise
Fluids (Increase of oral fluid intake)
Salt
Counter maneuvers
Diet
Compression garments
Healthy sleep habits
Dietary supplements
Acupuncture
Other

Please list any other non-pharmacological treatments you have tried:

Which pharmacological treatments have you tried?

Fludrocortisone (Brand name: Florinef)
Midodrine (Brand name: Promatine)
Beta-Blockers (Brand names: Propranolol, Metoprolol, etc.)
Pyridostigmine (Brand name: Mestinon)
IV Saline
Clonidine or Methyldopa (Brand name: Catapres or Aldomet)
Amphetamine or Methylphenidate (Brand name: Adderall, Ritalin or Concerta)
Ibuprofen (Brand name: Motrin, Advil, etc.)
Clonazepam (Brand name: Klonopin)
Alprazolam (Brand name: Xanax)
Droxidopa aka L-DOPS (Brand name: Northera)
Tricyclic Antidepressants (Brand name: Doxepin)
Selective Serotonin Reuptake Inhibitor (SSRIs)
Erythropoietin (Brand name: Procrit)
Yohimbine
Ivabradine (Brand name: Corlanor)
Somatostatin (Brand name: Octreotide)
Desmopressin (Brand name: DDAVP)
Bethanechol (Brand name: Urecholine)
H1 and/or H2 Antihistamines (Brand names: Zyrtec Zanntac, Claritin, etc.)
Other

Please list any other pharmacological treatments you have tried:

14. In considering the treatments you’ve tried which have been the most helpful? Please explain: *

15. Since your dysautonomia diagnosis have your symptoms: *

Improved a lot
Improved some
Not changed
Worsened some
Worsened a lot

If you have experienced improvement, why do you think this has happened? Please explain:

16. Which treatments for dysautonomia do you currently use? (Please list all) *

17. Have you read all or part of The Dysautonomia Project book? *

18. Optional: Please include a personal story about your journey with dysautonomia: