Looking for others diagnosed with PPPD.

@hickspanic
Hi everyone
I thought I was the only one out here with this insane illness. I was have been living and working and functioning with multiple sclerosis pretty much just fine til I got the jab and everything went to sh••! Within 4 days I couldn’t see, walk, pretty much anything without complete assistance. I ended up in hospital only to be told I had vertigo and I’d be fine in a few days. Five years later im 100% disabled, dizzy 24/7 not vertigo it’s 3PD. Life changing for sure.

I was diagnosed with PPPD at Mayo in Jacksonville last September by a vestibular specialist. It usually begins after an accident, concussion, extreme stress, etc. Mine began 2 days after a trauma in an ER. It takes a minimum of 3 months to begin recovery. It takes quite a while to retrain the brain. The 3 balance areas that are out of sync are the eyes, vestibular, and “ground” effects. I was told It doesn’t resolve on its own, but needs specialized Physical Therapy Vestibular exercises, and helps to also get counseling in Cognitive Behavioral Therapy with a counselor, and medicine to calm your brain making PT more effective. I had PT for 4.5 months 2x/week and got 95% better, but the had 3 heart procedures involving other ERs again, which threw my symptoms back to the beginning. I’m starting back over with PT. My symptoms range from from medium to intense: dizziness, imbalance, fatigue, slight breathlessness, eyes a little “off”, and lower half of body feeling heavy and rubbery legs. All of this occurs at one time when PPPD flares. Right now, beginning PT again, I use a cane when outside the house, and unable to drive. But it does get better if you take it easy, do your PT exercises daily and don’t try to power through the flares which only delays recover in the long run. It just takes time and patience which is hard for me to have since it keeps reoccurring with ER trauma. Hope this info helps others with PPPD. You may not have as severe symptoms as I’ve had just because it’s reoccurred on me.

Hello @susie2, I combined your discussion with an existing discussion titled:

"Looking for others diagnosed with PPPD."
- https://connect.mayoclinic.org/discussion/looking-for-others-diagnosed-with-pppd/

Here, you can meet @niclardy, @mikaylar, and @fishnuts99 who also talked about being diagnosed with PPPD.

Has anyone with PPPD also found that their ferritin level was low?

Yes, my ferritin levels have been dropping for at least the last 6 months. My hemotologist wants me to have a GI evaluation to test if my Colon is responsible. I am going to take iron pills plus have an appointment with a gastroenterologist in a week to see if a colonoscopy is warrented.

All with PPPD or other vestibular disorders look up Dr Yonit Arthur ,The Steady Couch, specializes in treatment has YouTube channel

Yes. It comes and goes. Periodically, I have to go to PT to have the Epley Maneuver performed.