Looking for others diagnosed with PPPD.

What is PPPD?

It’s a Medical condition that can be brought on by a concussion, migraines, illnesses. Mine was brought on by severe neck pain. It is constant unsteadiness and dizziness. Basically the pain caused a terrible vestibular issue in 2021, and that has left me with 3PD and has become neurological where my eyes and brain are not working together. I struggle with pain, fatigue, memory loss, brain fog, daily balance issues and dizziness.
I just want to have my life back

I hear ya! This dizziness, headache and eye/brain issue really, really sucks. I want my life back too. I am sorry for both of us.

Ya it’s amazing how something can stop you in your tracks. I hope that you have hope in better days ahead

I too was diagnosed with PPPD in the fall of 2023. I don’t know what caused the onset but suspect it was nerve related. My neck (Just the right side) has bothered me from the onset. I woke up one morning and it was there. I couldn’t see correctly. I was way off balance as if extremely drunk. I couldn’t operate a vehicle and every time I was taken somewhere in a car the acceleration would cause such extreme intensity that I couldn’t do anything for the remainder of the day. I found myself confused and unable to think correctly. i’ve seen numerous doctors, including Ophthalmologist, neuro- ophthalmologist, Otolaryngologist, Neuro-Otolaryngologist, 3 neurologist, 2 Chiropractors, 2 acupuncturists, Physical therapy, 2 Naturopaths/Acupuncturist. Now I’m seeing multiple cardiologists because I think what’s happening with my central nervous system has now started affecting my heart, I’ve Been to the emergency room four times because of Afib/Aflutter. Two of those times I’ve had my heart Restarted.
After about a year, I was able to start driving again locally. My brain seems to have gotten used to my condition, but the condition is still there and hasn’t changed, except for the intensity which ebbs and flows Depending on what I’m doing. It’s a very debilitating and isolating disease.
I’m 57 years old now I exercise regularly by cycling on a stationary bike (Peloton). One day I woke up, and my life was shattered.

I’m so very sorry. It’s a very scary and isolating. Hard to get others to understand. I was diagnosed with Ménière’s 4 years ago….. I knew something had to connected with my neck I kept fighting for answers and came up empty, I was told to live with it. I was misdiagnosed. So 4 years in and now told PPPD. Big hugs to you, it’s hard to deal with. I’m 52 and want to live my life.

my neurologist just diagnosed me with PPPD and have the same issues. Not much fun dealing with all this but better than a Parkinson's diagnosis which my Dr. has not ruled out just yet. I have a personal question if you don't mind. Since the onset of PPPD have you developed constipation and lower blood pressure? I have and wondering if others might as well.

Hello sorry for late reply. I do deal with blood pressure dipping down

Incredibly late reply here:
1st Diagnosis Doctor says it Vestibular Migranes.
2nd Doctors says it could be Menieres and Vestibular Migranes.
3rd Doctor tells me Its PPPD with a likely over lap of other ailments.

Like all of you I have all the symptoms: Balance issues, tinnitus, ear fullness, Nausea, difficulty with repeating patterns (grocery stores), occasional vertigo attacks that last days, shaking hands, perspiration. It ruined my career and altered my life's course. With incredible difficulty I have just had to learn to adapt, Im nearly five years into this. It will change you your life.

Hi all,
I was diagnosed with vestibular migraine a couple of months ago because I’ve been dizzy and on and off for me. I was told to take magnesium and vitamin B two and high doses I think in some ways it’s a mind-body issue I don’t know what others think but there is someone called Yonit Arthur, she’s an audiologist and she has a website called The Steady coach and she’s on YouTube and she works primarily with people who have PPPD and other forms of neural circuit dizziness so if for for all who are suffering, I think it’s worth taking a look. She’s really interesting and I think it could be helpful to take the neuroplastic approach as a tool.