• 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: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? › Reply To: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders?

July 9, 2012 at 8:21 pm #2562
Dr. Diana
Keymaster

Hi!

I have been diagnosed with Chiari 0 Malformation with 3mm herniation. Obviously I don’t fit the 5mm criteria for Type 1. I started taking Diamox and became violently ill.
Is there another alternative drug that has the same or similar effects? We discussed that my herniation is possibly a result of hydrocephalus and the pressure pushing down on my brain.
I have neck pain all the time that radiates to my shoulder blades. I also have issues changing postures. Lying down is comfortable for a little and then the pain comes back. However, when I sit up I feel like I am going to faint.
Not sure where to go from here. My doctor does not want me to continue taking Diamox, and I don’t really want to consider decompression surgery just yet.
Thanks!
Jill

Hi Jill, There is no magic answer, but because there is no substitute, really (lasix can help, but it won’t do nearly as much as Diamox), I’d circle back. Do your doctors know WHY you had a bad reaction? It doesn’t sound like an allergic reaction… Did they check your blood acidity and potassium prior to prescribing? If your CO2 is not WAY above 22 before starting Diamox, you may have suffered with acidity. And how is your potassium level? If both of those are good, I’d next look at your dosage and see if that can be tweaked. Any contraindications, medicine-wise? Your doctors should be able to explain WHY you had a weird reaction, my friend. I wouldn’t let them off the hook that easily (especially if surgery that may or may not help is your only other option). Let us know? 🙂 Diana

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