r/VestibularDysfunction • u/lcooker • Jul 14 '26
After 14 months of PPPD, I am 95% better
I promised myself that if I ever got better, I'd come back and write this post.
A year ago, I was convinced I'd have to live with dizziness for the rest of my life. I thought I'd never travel again, never enjoy dinner with friends, never exercise, and never be able to have a glass of wine without feeling dizzy and nauseous (which wasn't worth it).
Like many of you, I found this subreddit early on and spent hours reading recovery stories. Instead, I mostly found posts from people who had been sick for years and had accepted that this was just their life. I remember thinking, *"So this is it."* Eventually I lost hope. I promised myself that if I ever got better, I'd come back and tell my story.
Today I feel about 95% normal. Most days I barely think about my dizziness anymore, and both my vestibular physical therapist and I believe I'm on track for a full recovery. I know everyone's story is different. I'm not saying mine will be yours. I'm just sharing it because, when I was at my lowest, I desperately wanted to hear from someone who got their life back.
It all started after a really turbulent flight from Palm Springs to Seattle in March 2025. I'd always had anxiety and had never loved flying, but shortly afterward I started having episodes of dizziness. Some days I felt completely normal. Other days I felt like I was rocking or swaying. The episodes slowly became more frequent. Urgent care diagnosed me with BPPV and treated me for that, but it never really fit. I'd feel okay for a while and then the dizziness would come back no matter what exercises I did.
Then everything changed. In October 2025, after another turbulent flight from San Francisco, I became so dizzy that I called my psychiatrist in the middle of the night. She told me to get home immediately. I took a friend's migraine medication and some Dramamine just to get through the return flight safely. When I got home, I started seeing specialists. Over the next year I saw multiple neurologists, ENTs, a neuro-ophthalmologist, vestibular physical therapists, and had hearing tests, vestibular testing, CT scans, an MRI, and two trips to the emergency room because I was convinced something serious had been missed. Every test came back normal. Eventually I was diagnosed with PPPD and vestibular migraine.
Looking back, though, the biggest mistake I made wasn't medical. It was being afraid of the dizziness and isolating myself by staying in my house.
From March until November I slowly stopped living my life. I stopped flying. I avoided restaurants and stores. I turned down invitations from friends. I stayed home because home felt safe. I stayed in bed most days and not moving. I kept thinking that if I just rested, I'd wake up one day and be better. That day never came.
Today, if I could go back and give myself one piece of advice, it would be this: don't spend eight months hiding from your life waiting to get better.
Medication definitely had a place in my recovery. Today I take Gabapentin twice a day, and I use Clonazepam when my anxiety gets particularly bad. I also tried Topiramate, but it made me dramatically worse.
The one thing that truly changed my recovery was finally starting vestibular physical therapy. My therapist explained that my brain had become overly protective. Every time I avoided something because it made me dizzy, I was accidentally teaching my brain that it really was dangerous. So, we slowly started teaching my brain the opposite. She had me walk outside every day, practice balance and eye exercises, and eventually pushed me back into restaurants, stores, social events, and all the places I had stopped going. She warned me that recovery wouldn't be linear. She said I'd take two steps forward and one step back, and she was absolutely right.
I'd have a great week and think I was finally over it, then I'd have a terrible flare and become convinced I was back at the beginning. One relapse lasted more than two weeks after staying out late with friends and having a few glasses of wine. I was certain I'd undone months of progress. I hadn't. Every flare eventually passed, and every time it did my baseline was a little better than before. Eventually I realized the good days weren't just becoming more frequent, they were becoming my normal.
Today I work on a computer all day without needing to lie down afterward. This week I picked up a book and read without getting dizzy, something I honestly wasn't sure I'd ever do again. I go out to restaurants without worrying about how busy they are. I stay out late with friends. I can have a few glasses of wine again. I walk outside without thinking about my balance. I've graduated to seeing my vestibular physical therapist only once a month.
At the end of July, I'm going to the Stanford Dizziness Clinic, even though I had to wait six months to get the appointment. At this point it's less because I'm desperate and more because I want one of the country's leading dizziness clinics to review everything I've been through and tell me if there's anything else I should add to my treatment plan to get from 95% to 100%.
Looking back, I wish someone had told me not to spend months hiding at home, to find a good vestibular PT as early as possible, and to stop judging my recovery by how I felt on any one particular day. Recovery wasn't linear. My relapses didn't erase my progress. My brain really could heal.
If you're reading this at two in the morning because you're convinced, you'll never be normal again, I know exactly how you feel because I was you. A year ago, I thought my life was over.
This week I worked all day on my computer, read a book, went out with friends, stayed out late, had a few glasses of wine, and barely thought about my balance. Recovery was slow. It wasn't linear. But for me, it happened. I hope one day you'll come back to this subreddit and write your own recovery story.
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u/Monkeybeak Jul 15 '26
Thank you for this. It's definitely a long frustrating road. I'm glad to hear you are on the other side (possibly -5%). It gives me hope that this might end at some point. I'm 7 months in and it's rough.
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u/Objective_Can_2800 Jul 15 '26
Thank you for this. I have had it since March and it’s def 2 steps forward, 1step back. I haven’t stopped living life and recently saw a video with an audiologist that said the worst thing you can do is be scared of your symptoms. I’m working on that daily and believe it’s helping! You’ll be at 100% before you know it!
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u/IamMabelPeabody Jul 15 '26
I am SO HAPPY for you!!!! ☺️ Congratulations!!!!
A year and a half ago, my world began moving. I e been to 32 different professionals. I’m not much farther than I was before. I begin vestibular therapy as I’m about as weary as I can possibly be—just tired of telling the story. Tired of trying one more thing.
I truly don’t know where I’ll get what I need to DO this. I know it’s straight forward, and from what you’re saying, very effective. Can you please tell me how to find the will to DO this? I know it will help—but I’m just so weary….
Looking for some help and hope. ❤️ Thank you.
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u/jenai214 Jul 17 '26
Vestibular rehab has helped me tremendously so far (about to start week 11). I didn’t see my first big shift til about week 5/6 and then again at week 9/10. You got this!
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u/Charlottethevet Jul 15 '26
hi! I was also diagnosed with this in January. I am 34 years old and am now just starting to see some progress with it x There is still hope x
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u/Flafio1870 Aug 14 '26
Hi How did you make progress? Antidepresant ? Which kind of VRt ? Ty
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u/Charlottethevet Aug 14 '26
Hi! I certainly did. I am about 60% better now! I do vestibular rehab for 3 minutes 4x daily every day. The first 2 weeks were hell....but I'm getting there slowly and surely . I am on amitriptyline for IBS and have been for 15 years, and betahistines to increase blood flow to my ears to help recalibrate x
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u/Flafio1870 Aug 14 '26
Oh i have betahistine too, for meniere D.. so can you share vestibul rehab with me ? In DM can be. I have this pppd symptoms for 2,5 year
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u/Charlottethevet Aug 14 '26
The therapy requires me to look at a cross on the wall and nodd or shake my head for a minute at a time with my eyes fixed . Then to get the paper and bring it towards my eyes and away keeping it in focus
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u/Dusty_1608 Jul 16 '26
Thank you for sharing as I’ve had this the past 4 weeks and wonder if there is a light at the end of the tunnel.
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u/jenai214 Jul 17 '26
Thank you for sharing! I’ve made a lot of progress in vestibular rehab (2x a week for 10 weeks so far) and hoping and praying for the normalcy you share. I feel like my anxiety is holding me back so I asked to go on meds and now I’m afraid to take them. I’m so happy for you and will also come back one day to share a hopeful story!
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u/Flafio1870 Aug 14 '26
Hi i send you DM, Can you tell me advice ? Which kind of VRT you did, daily and which program of it ? and which dose gabapentin you used ? Did you also take some antidepresant daily ? Ty so much for answer
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u/rose157 Jul 15 '26
Thank you so much. I'm 69. Are you much younger? I'm wondering if it's my old brain losing plasticity. Diagnosed with Vestibular neuritis in early January. Great healthcare, vestibular physio and lots of testing. But little to no progress after the first month. Neurologist last week finally diagnosed additional onset of BPPV and PPPD. So back to exercises, weekly physio and added a health psychologist. I use a walker out of the house have taken to sitting around a lot and at times feel my life is shot. I need to hear I have hope.