fbpx

Autonomic Dysfunction

/, Procedures/Autonomic Dysfunction
Autonomic Dysfunction2018-07-05T10:52:08+00:00

Stryder's Symptoms

Symptoms are often intermittent – they happen fast and hard and sometimes there are zero symptoms. No rhyme or reason, not positional- POT’s, Hyperadrenic POTs and SVT all ruled out. Pheochromocytoma also ruled out.

We recently went to see Dr Grubb, a world-renown autonomic dysfunction specialist, for answers and/or more testing and he said we have ran into the wall of human knowledge and will not know what he has. We need to cherish the days – we don’t know what tomorrow will bring. Stryder has a very high risk for stroke and may be “fine” today and not tomorrow. 

Dr Grubb believes Stryder has Mitochondrial disease and ROHHAD Syndrome –  He said we could do invasive testing to confirm “but then what?” The outcome is the same– Dr Grubb was very compassionate and spent a lot of time with us- he reviewed Stryder’s records prior to the appointment and gave a lot of examples of why he thought we have to live each day.

Stroke-like Symptoms (not daily)
**Admitted for symptoms, no answers — Follow-up admission for 7-day EEG where the neurologist thought to be Vascular in nature. After first night, he had Stryder do some “tests” bending his neck for 10 second intervals and found slowing on EEG as “proof” although doesn’t know reason – released from hospital to follow up with neck surgeon.
  • Dizziness
  • Photophobia
  • Lightheaded
  • Just “not with it”
  • Balance problems – sometimes legs don’t work at all
  • Left eye pain, severe where he has to have it covered
  • Double-vision (Does not happen with every episode)
  • Slurred speech (Does not happen with every episode)
  • Severe nausea (Does not happen with every episode)
  • Not able to say ABC’s or count to 10 (Does not happen with every episode)
  • No head or other pain, except in eyes, when this happens
  • BP is normal (last event showed BP 96/63, pulse 121) – although when he was admitted his BP was VERY high, but he had all the above symptoms at that time
Tachycardia
  • Zio monitor for 2 weeks showed average HR 110; highest HR was 186, he was sitting on the bus in wheelchair on the way home
  • Almost always is above 110, except we now see it in 90’s since starting oxygen
  • Abnormal HR response during exercise tests – blamed on beta blockers the first test but hasn’t been on them for years and other exercise testing showed same response (no change in rate)
Bradycardia
  • Usually only low during high BP’s and sometimes low BP’s
Blood Pressure abnormalities
  • Highs of 188/164: Duration 1-60 minutes – it varies significantly but most times will go down within 10 minutes
  • Lows 53/47 – Iv’s are able to fix and since doing daily, BP doesn’t go below 88/60
  • Highs and lows happen often, not positional
  • High BP will go down, sometimes within 10 minutes or sometimes within 30 minutes
  • High BP’s seem to occur about 30 minutes after play
  • Diastolic goes high often (over 100 every single day)
  • Abnormal (no change at all) BP response during exercise tests – blamed on beta blockers the first test but hasn’t been on them for years and other exercise testing showed same response
  • Does not feel any symptoms, although he does look “different” and his service dog often alerts when it’s extremely high
  • Zio monitor for 2 weeks showed average HR 110; highest HR was 186, he was sitting on the bus in wheelchair on the way home
  • Almost always is above 110, except we now see it in 90’s since starting oxygen
  • Abnormal HR response during exercise tests – blamed on beta blockers the first test but hasn’t been on them for years and other exercise testing showed same response (no change in rate)
Hypoxia
  • Oxygen levels drop periodically throughout the day
  • Drops can last seconds or minutes, but no more than 10 minutes
  • There is no correlation found with activity
  • Often seen holding breath, especially when doing activities that require extra thinking (games) and sometimes just while watching TV
Exercise Intolerance
  • No blood pressure change
  • no pulse changes
  • out of breath
  • extreme overheating, panics and needs drinks and fan but prefers air conditioner, even when it’s 20 degrees outside
  • extreme fatigue
  • often dizzy
  • Bright red face
  • In Wheelchair at school and any “long distant” walking
  • 6-minute time limit before body “gives out”

Diagnosis Details

Categories:

More About Diagnosis

Dysautonomia International

Video Game Club

We are starting a Video Game Club – more info coming soon….
Looking for kids 8-15 that would like to get together and play video games together. Great time to socialize and have fun!

Help Get Our Club Running

🎮WE NEED YOUR HELP🎮

Ways to help:
🕹Monetary donation to help with purchase
🕹donate specific items (used, new or refurbished)
🕹contact a business that can help
🕹reach out to others you may know that can help
🕹share with me a business or entity that may want to help