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Just diagnosed with PPPD

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Joined: 3 weeks ago
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Hi, I’m Jennifer, amm54 years old and have had symptoms of PPPD for 3 months on 4/27. The day after taking my first dose of the Pfizer vaccine, I had swollen lymph nodes under both arms, blurry vision,  headache and exhaustion. On day 4, I started bobbing,  swaying, leaning and tilting. At first I found it ironic because it felt just like being on a boat- and I sail. I thought it was mal de debarquement. Within a  month I got an MRI, which was normal except for hyperintensities associated with my age and history of migraines. Neurologist was a waste of time. We did a video appt and he said I could not have MDDS because I wasn't falling out of my chair. His impression was post-concussion syndrome or Post-COVID, but I have not had a brain injury or COVID. The eye doctor did a really thorough visual functions exam and kept asking if I was sure I did not have a head injury. The PT eval on Zoom was a waste , but the in-person follow-up was helpful. The PT gave me walking/head motion exercises that make things worse. Told me I had to provoke my symptoms multiple times daily to habituate to it. I had to promise I would not alter my lifestyle.

Three months in and it has worsened to nearly constant. I had a reprieve for 4 hours when I went sailing and for an hour watching a Litttle League practice. I have been exhausted at the end of the day. Even seeing wind blowing through trees in the corner of my eye triggers it.  I notice the symptoms before I even realize what triggers it. The last straw was when I got incapacitated in a big box store when the ceiling fans got turned on. Then I knew I couldn't live like this.

My first PT left and I really like my second PT. She told me about PPPD and said that my vestibular system is chronically overloaded. Told me that daily PT exercises and the virtual reality rehab program would not start until I stopped doing telehealth and have much lower baseline symptoms. Program now is to do puzzles and adult coloring every day. And stop my telehealth work. Two weeks from now I am going to be reassessed.

My schedule is set 6 weeks to 2 months in advance.  Early on I blocked out a week for brain rest. It's for first week of May. I have sick time, but have no approval for it. Yet. I did not have a PCP when this started, but the random doc I first saw who said he had no openings on his panel, now does. Whether he wants me or not, he is my PCP now. I am hoping he will agree to a temporary disabled parking permit and approve my week of sick time. Moving my car hourly between patients is killing me, and if he refuses to grant 1 week leave, then I have to find another doc who will support my needs and consider disability leave. I love my work and can't imagine not doing it, so hoping a couple of months of disability leave and intensive rehab will fix this.

Any suggestions or feedback would be greatly appreciated!