• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

Reply To: re your 'head circumference' study and…

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › The Latest Research › re your 'head circumference' study and… › Reply To: re your 'head circumference' study and…

August 22, 2011 at 8:00 pm #1400
Beth
Participant

Well, we had a horrible appointment today – truly a ‘when you hear hoofbeats, look for a horse and not a zebra’ experience. The neurologist was not at all receptive to the theory. Pretty hostile, in fact.

She says Em has migraines, plain and simple (she is the only one who believes this so far, no one else we have seen does). She thinks the pain medication is making it worse so she wants to take her off the only pain meds she is on, which is Tylenol and Aleve. The headache was present long before she ever took medication and it is constant so I just don’t see it is a rebound headache. I just don’t see how she can claim it is caused by the meds. She is upping the amitriptyline to 62 mgs even though the pain clinic said they only wanted to go up to 40 mgs. Increasing dairy intake when my daughter is lactose intolerant. No caffeine. Get up and exercise even though the tachycardia makes her faint. And so on. Very little of it made sense at all, honestly. Seemed like a ‘one size fits all’ protocol.

She ignored everything we said and, frankly, made up things to fit her preconceived notion of what the problem is. I feel like she was going to see migraines no matter what I said. She was very dismissive of this “theory” [you have to say it in a condescending tone] because she has such a successful migraine protocol, tried and true, to offer us. I am sure it is successful for kids with migraines but she dismissed the concept of an EDS patient needing customized care entirely.

At one point the doctor made the statement that all she could do was give us her treatment recommendations but it was up to us to follow it. I think she figured out that there is little chance we were going to be compliant. As far as she is concerned, it will take a good 6 months to figure out Emily’s headaches. It will be rough, but we have to do it. Sigh. She won’t come out of her box long enough to see the zebra standing in front of her. All she sees is a horse.

I will contact Dr. Tinkle’s office tomorrow and see if he will let us try the Diamox and mast cell treatment. We will not do any of the neurologist’s recommendations until we hear from Dr. Tinkle. He orginally said not to allow anyone change Em’s medications so we will see what he has to say.

Needless to say I am extremely frustrated. Any suggestions?

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020