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Dysautonomia Homepage- A guide to living with dysautonomia

Doctor Referral
Signs and Symptoms of Autonomic Dysfunction
Preparing yourself for a Tilt
Interviews and Site updates
Getting Involved
Get Togethers and Upcoming Events
About Us
Contact Us

What is dysautonomia?

Dysautonomia is an umbrella term used to cover all forms of autonomic dysfunction. So if you have been diagnosed with Vasovagal Syncope,POTS,Orthostatic Intolerance,Neurocardiogenic Syncope,etc, Dysautonomia would describe you as well.

Do I need a pacemaker?

A pacemaker will help people who are bradycardic. It has also been seen to help people whose heart rate drops before their blood pressure does... this information can be had in the results of your tilt table test.
An ICD is used in people who are both bradycardic and tachycardic.
Another implantable that might be useful, is an implantable loop recorder, or a Reveal. This is a heart monitor that is implanted much like a pacemaker and keeps track of what your heart does for about 12 months (as opposed to the external 30 day monitor)
More information can be had about all three of these at:

I have problems getting out of bed in the morning, what can I do to combat this?

Blood pressure is lowest in the morning,so first of all take things slow. Try stretching before you try to sit up... wiggle your toes and fingers, move legs and arms back and forth and try to get that blood flow going. Move slowly to a sitting position, have a drink of water or gatorade, then try to stand.
Some people are helped immensely by putting the head of their bed up on blocks, others by putting the foot of the bed up on blocks. See if one of these works for you.

My doctor doesn't listen to me, what can I do?

This might seem like obvious advice, but get a new doctor!
Please remember in the doctor- patient relationship, YOU are the consumer... YOU pay for services, and I doubt you want to pay someone to be rude to you!
Your primary care physician should be your on a relationship with him/her and above all make sure this is someone you trust!
When you appear at a doctor appointment, have a list of symptoms and problems you would like to explore further. Explain them in a clear,concise, and organized fashion.
Make sure you get copies of all test results, and that your doctor explains to you exactly what each finding means... you do not want to go home home not knowing what exactly is going on with your body.
Do NOT let your doctor patronize you! You know how you feel, and he/she does not. If your doctor makes you feel inferior, tell them!
If the behavior does not change, find a new doctor... You must take control of your own care!

Dysautonomia Homepage created by Tara Dawn Chiusano


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