• 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

Chiari Check

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Chiari Check

  • This topic has 4 replies, 2 voices, and was last updated 8 years ago by Yvette.
Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • January 15, 2015 at 7:04 pm #774
    Yvette
    Participant

    I am new to forums so please bare with me. I was diagnosed with EDS over a year ago (a long awaited diagnosis). I am not sure what symptoms I should list, I actually learn that things I experience are symptoms by reading other people’s posts. I am shaky, debilitating head aches, visual disturbances, severe brain fog, anxiety, weakness, ear pain, neck pain, nausea, bloody nose, and my symptoms are greatly exacerbated with rainy weather. Long story short I finally have a few medical professionals that are listening. I have an appointment with a Neurosurgeon at the end of this month to check for chiari. I am hoping to get some advice on questions to ask and tests I should have, possible medications that may help or even some other diagnosis like chiari I should be checked for? I am barely able to care for myself at this point so any advice is appreciated. 🙂

    January 18, 2015 at 11:09 am #5240
    Brenda
    Participant

    Hello Rene

    I hope that your Neurosurgeon helps you if you have Chiari. I have been diagnosed with Chiari 0 and cerebella tonsillar ectoptia but my Neurosurgeon doesn’t think that it is causing a problem with CSF flow even though the Radiologist said it was blocking the foramen major. I would be interested to know how you get on.

    Now I have constant pain in my head, neck and left shoulder which stops after a while when I first lie down at night but I am woken sometime between 2-6 hours later by excruciating pain in my head and a feeling as though my life is at risk which makes me sit up for the rest of the night.

    I am seeing a Neurologist this week and wonder whether anyone can help me ask the right questions. I believe that my autonomic nervous system may be tested and I know it’s not functioning properly because of the problems I have such as fast heart rate, insomnia, breathing problems, etc.

    I haven’t been diagnosed with EDS yet because I am not hypemobile although other family members do have hypermobility. I’ve read Dr Diana’s book but am not sure whether to quote parts to the Neurologist because I don’t want to appear to be telling them how to do their job. At the same time, Dr Diana’s book has made me realise that I have so many of the symptoms she describes. Any ideas how to get an accurate diagnosis and making the Neurologist aware of EDS without them thinking you’ve just been self-diagnosing from the internet?

    Best wishes and good luck

    B

    January 20, 2015 at 2:13 pm #5245
    Yvette
    Participant

    Hello Brenda,

    Thank you for responding. I too have constant pain in my head and neck and in my right shoulder. My pain becomes intolerable during the winter months and during barometric pressure changes. I lay down most of the time to control the pain and I keep my head slightly propped up. It feels like my head is going to explode from the pressure and the brain fog is terrible. I am bed ridden majority of the time from pain. I appreciate you sharing that you feel your life is at risk due to the pain. I feel that way all the time. I can’t imagine this much pain is not life threatening.

    My only advice is to see a rheumatologist or an orthopedic doctor if you suspect EDS. A rheumatologist is the appropriate specialist for EDS so I would start there.

    Definitely tell your neurologist about your symptoms and things you have read. From my own personal experience, I feel like the more info I can give, the closer I am to getting better.

    My mother has so many symptoms of EDS but she’s not hypermobile. I feel like she has some variant.

    I wish I could be more helpful, I hope you feel better soon.

    January 21, 2015 at 3:30 am #5251
    Brenda
    Participant

    Hi Rene

    Sorry to hear that you are in so much pain and hope you find an answer soon. Dr Diana’s book suggests a way forward and I see that you’ve downloaded it.

    Did your Mum also get an EDS diagnosis? If so, I would be interested to know how they came to this conclusion if she is not hypermobile. I have seen a Rheumatologist who thought that, as I didn’t have hypermbility I couldn’t have EDS. He didn’t really take into account that it was in my family.

    Best wishes

    B

    January 23, 2015 at 2:24 am #5254
    Yvette
    Participant

    Hello Brenda,

    I did start reading the book, I look forward to finishing its a helpful read so far.

    My mother has not gotten an EDS diagnosis. She is extremely sensitive to everything she eats, smells, and touches. I understand that not everyone who has EDS is exactly the same. I am also not sure what my mother considers flexible and unfortunately there is no way to tell because of the extent of her injuries.

    I hope you find answers, good luck.

    Rene

  • Author
    Posts
Viewing 5 posts - 1 through 5 (of 5 total)
  • You must be logged in to reply to this topic.
Log In

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