• 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: Is anyone else like me? :(

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Is anyone else like me? :( › Reply To: Is anyone else like me? :(

March 16, 2012 at 3:07 pm #1856
JenniferWaters
Participant

Hi Diana,

Yes I saw the lecture (remember, I was the one who cried watching it?! 😉 )

Regarding the symptoms of hydrocephalus: I am sensitive to motion, yes, but I do not get sick. Ears are sensitive as well when it comes to things like altitude (even driving up or down slight hills). I am okay flying in planes as far as my ears go (but if I don’t chew gum, I’m in huge trouble – my ears have a hell of a time with pressure changes), but we all know the toll it takes on our cardiovascular system while it is trying to make changes to compensate for the lower oxygen levels. I have never been a ‘headache’ person until recently, but I do believe that now it is related to new (yay! 🙁 ) food sensitivities. No tremors in the morning, only on muscle exertion. Ears have been ringing for years, but I also do have TMJ disorder BADLY. My oral surgeon could not believe how small my temporomandibular joints were. The THOUGHT of blowing up a balloon scares me. I feel like I’ll pass out. Any valsalva maneuvers make me feel horrible. I get cardiac pauses and rhythm changes SO EASILY, and I feel like my heart is going to stop beating. And yes, often times, I do get a headache afterwards. The headache I’m describing is felt mostly in my temples. Many times, after exertion, I have a headache that I’m sure everyone can understand – where you want to ‘squeeze your head’. Most of us probably do squeeze our heads! (Or am I nuts?) I have unilateral flushing and it’s HORRIBLY HOT. I believe you commented on a video of mine once and said that you had this too.

Regarding medications: I am extremely sensitive to E-V-E-R-Y-T-H-I-N-G. The last time I took an anti-histamine (loratadine, 1/4 of a pill), it really affected my heart rate and cognition, but my dizziness went away and I actually took a shower standing up! I was amazed but could not handle the other side effects. It was very bittersweet. I have GERD and should be on Zantac or Prilosec for that, but I’m not. My stomach is a mess and becoming more and more sensitive with each passing day. About ‘seeing’ or ‘hearing’ my pulse – YES! BIG TIME! I will sit in the bathtub and I can see my heart beating and my stomach actually moves. When I strain or change position, this happens. It is much worse when I am upright. I figured this was a blood pressure thing, as I fall more onto the hyperadrenergic side and actually get hypertensive when I’m up.

I find that I have to start medications at extremely low doses (I cut my beta blockers into 1/8 of a pill and still have side effects). I hate starting new things because if there’s a side effect, I’ll probably get it. I’ve stopped reading about side effects because so many people thought I was ‘making it up’ !!!

I hope this gives you a clearer picture of where I’m at. I feel a little bit helpless knowing that things could get better if I could tolerate the medications.

Yikes. This is long. Sorry!

Jen (Thanks for the retweet, Diana! That’s me on twitter, too! 🙂 )

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