Constant dizziness/imbalance

The symptoms of PPPD are what I have.
I've been going through this a long time. I get vertigo with nystagmus seasonally usually in connection to allergies spring and fall. Just went through PT from early October to the end of November. The eye exercises fixed the nystagmus but, not what I thought was vertigo. Early on in my PT the movements of people, animals or things around me would make it really bad. I had all the vestibular testing which after having gone through PT were normal.
So, both my Primary doctor and the ENT referred me to neurologist. The neurologist suggested I do an exercise where I roll over in bed from the head of the bed to the foot a couple times a day, the next day do the same exercise in the opposite direction. He also ordered an MRI of my brain w and w/out contrast. I had that done on Friday and the report posted Friday night. Something in the report cause my Primary to ask when my next Neuro appt is scheduled. Whenever I push her for results, she didn't order she usually refers me to discuss with the ordering doctor. From what I understand of that report there is no tumor but, some other possible diagnosis. I guess I will find out at my appointment since there is no acute (urgent) findings, I'll just have to wait it out. In the meantime, I will add PPPD to my list of questions for the neurologist. Thank you for this comment and I will be looking up as much information as I can to take with me a long with questions regarding it to the neurologist.

I am a 81 year old male with chronic dizziness for 6 years. I know exactly when it started July 29, 2019 after a viral attack. Viruses can damage nerves leading to infectious neuropathies. I have self diagnosed myself with PPPD due to this. PPPD has no definitive diagnosis, like Parkinson's does not have a single definitive diagnostic test. Hence, I self diagnosed since doctors do not listen. I have been to 4 Neurologists and twice had full tests done at Duke Otolaryngology Lab including AVNG. They had the audacity to suggest my dizzy spells were exacerbated by my expectation of problems. They never heard what I said about genesis of problem or fact that I am constantly dizzy 24/7 for 6 years. I thank God I can still function but at a much diminished capacity.

Please check for Superficial Siderosis

Elisa, I just came across your post. I've been diagnosed with PPPD and Vestibular Migraine. I've failed all of the usual Rx and now rely on Propranolol for prevention of full blown migraine HA and Reyvow for abortive. I also use meclizine for nausea. I have been dizzy since January of 2020. Has your husband figured out how to do any exercise on a routine basis? I have very little leg strength. Can't walk for more than 10 minutes w/o triggering severe dizziness. Recumbent bike-nope. Leg weight press--nope due to severe knee pain. Hatha yoga--yes to a degree but not as a routine due to so many migraines. Sorry for the dump of my struggles. Just feeling very discouraged today with seasonal changes and triggers. thanks for listening.

Hi @migraineelaine,
Sorry to hear you are also experiencing PPPD. My husband just had 2 more bilateral strokes (his 6th and 7th), on May 1st, and another heart attack, on August 12th, so he now is rarely “moving” but still has the 3PD. He was pushing through the dizziness and nausea, doing daily calisthenics and weights, until his laminectomy surgery, fall of 2024. Unfortunately, he never found any exercises that didn’t induce the dizziness. He just pushed through, “ his/our Isshinryu “mind over matter” perspective after 40 years in martial arts.

Thanks for your reply. Oh my goodness. Your husband (and you) have been through so much. You are both incredibly resilient. He sounds like he is very disciplined relating to his many years in martial arts. Please give him my best. I have learned to identify and appreciate the small things. But alas, my body prevents so many of my desired activities. sigh
And we keep calm and carry on...
Karen (elaine)