• 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: dermatographia, anyone?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › dermatographia, anyone? › Reply To: dermatographia, anyone?

September 27, 2011 at 10:56 pm #1510
Dr. Diana
Keymaster

Thanks Dr. Diana, too many years now I’ve been dealing with this!!!!!!! I do have(what my doc thinks) is neurocardiogenic)** origin of autonomic dysfunction/ It just started 3 years ago…I just had 2 weeks ago,after years of complaining i might add, a heart monitor for 24 hrs. within minutes of being upright..my heart jumps to 120-140,& my local doc scheduled me for an appt. with Dr Eliot Wallack(philadelphia) 9 whole weeks after this was discovered NOT to be (figuratively) in my head. BUT I also have “acquired Chiari” & small brain stem srynx**I truly believe i have multiple spinal fluid leaks..outrageous pressure builds in my head,swollen optic discs & a funny thing happens, either i feel a sudden burning pain in the middle of my back(breaking through) OR weird sensation almost like it’s behind top part of my throat…then my left nostril starts leaking clear fluid & within minutes the “pressure feeling” is no where like it was minutes before….I’ve told this to 3 different local docs & they look at me like i’m nuts!!! Then the REAL fun begins….for days/sometimes weeks i can’t stand up for longer than a few mins. without the autonomic stuff… My question to you….How do we get these doctors to HEAR us??? & get them to believe that not EVERY patient that walks through their door is looking for attention,pain meds or needs anti-depressions drugs. I just can’t take it anymore …any advice would be appreciated! Dawn

Hi Dawn, You are among family here, as most of us can relate to what you are saying. Finding doctors is THE hardest part of dealing with this condition, I believe. You may be an “easier” case than most, though. 🙂 Do you still have swollen optic discs, my friend? If so, you have a “get Diamox for free” card! Diamox is the standard treatment for “pseudo-tumor cerebri” (or we also call it “idiopathic intracranial hypertension”). If you stay on Diamox (talk to your doctor about sulpha allergies, taking baking soda capsules, etc) you should relieve many of your symptoms. Then please check into mast cell disorders (which I believe are one cause of our hydrocephalus and I betcha’ that helps with those POTS symptoms). Diamox flies in the face of traditional treatment (especially with orthostatic intolerance), but remember, we are treating the CAUSE of the problems, not the symptoms. It can be a tap dance for a month or so, but then things start to line up. In our family, we were all able to avoid brain shunts, cervical fusions and Chiari surgery through medical management. I pray the same happens for you. We are here if you need us! Meanwhile, we are all familiar with trying to find doctors who will listen… I think we scare many of them just a little bit (which I understand). Big hug, 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