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In this podcast I interview Donna Nowak Robillard from Michigan about her journey and experiences in living with Dysautonomia (Postural Orthostatic Tachycardia Syndrome) and Hemiplegic Migraines. This podcast was recorded 8 July 2013 and is one in a series on the topic of dysautonomia and hemiplegic migraines.
Thanks for sharing. Newly dx w POTS and dealt with HM for several years. Very helpful.
Hi Rachel, thank you for your feedback. I wish you much healing and help along your journey with POTs and HM. I too suffer from both. Please check back as I have several more episodes that will be added where I’ve interviewed guests about their experiences with POTs and HM. Best to you! ~ Angela
I was diagnosed with complex Familial Hemiplegic Migraines in 2013. I was very recently diagnosed with POTS . I’ve been dazed and confused with what’s happening to me. I’m adopted so no family history to go on.
What medical test should I insist upon having and who are the top physicians and researchers in this area of medicine?
Hello there Donna,
I’m so sorry to hear of your struggles with Hemiplegic Migraines and POTS. If you have been formally diagnosed, I’m guessing the necessary tests have already been completed. The Tilt Table Test is a definitive test for diagnosing POTS.
As far as top physicians and researchers, part of that answer depends on where you live. As a whole, the Mayo Clinic is doing cutting-edge research in the area of Dysautonomia and POTS. Dr. Benjamin Levine created the Levine Protocol which is a physical therapy program designed specifically for POTS patients.
You can find a ton of helpful information here:
Dysautonomia Information Network
You can find doctors here:
Dysautonomia International Map
Find a Physician | DINET
You can also find doctors by discussing this issue with the physicians who diagnosed you with your conditions. Ask them for referrals to specialists they would recommend for your specific case.
Facebook Groups or Pages:
International Hemiplegic Migraine Foundation
The International Hemiplegic Migraine Foundation Support Group
Worldwide Hemiplegic Migraine Support Group
There are many more, but that should be a good starting place for you. Reach out to support groups and look for others in your area who are also diagnosed with your conditions to gain and offer support. Reaching out to others going through the same thing can offer solace and renewed strength.
I wish you healing and health on your journey.
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