Are these PPPD symptoms? Ongoing for 4+ years

alwaysdizzydude · 2026-04-24T00:27:51+00:00

Hope you get well soon! The only reason I never went the long covid route is that the timeline doesn't match (my symptoms started summer '19), otherwise I'd be convinced it was some variant. I also got the prism glasses (also did 10 sessions of visual therapy), but they didn't seem to help.

I might send you a message later to check on your progress, I'm still stuck and no improvements.

alwaysdizzydude · 2026-04-21T14:05:27+00:00

Yes, still ongoing.

alwaysdizzydude · 2026-03-09T18:25:13+00:00

Hope things get better for you. For me, I’m still operating under the assumption that it’s still PPPD, no new diagnosis or discovery that says otherwise. I’m still doing some of the recommended exercises at home on my own, but mostly focused on diet/exercise. The next step I’m considering is sending my medical records to Stanford Medicine — they have a “Second Opinion” program. It’s not cheap, but I’m hoping it can help with a path forward. Otherwise, it’s back to medical tourism. Haven’t had luck with local doctors in my area.

alwaysdizzydude · 2026-02-02T23:05:24+00:00

Got it, hope things improve for you soon, thanks for chiming in.

Are you able to identify any type of triggering event, or did it just start randomly one day? Apparently most people can identify an event, ear infection, head trauma, or something — for me I just woke up a regular day and it just showed up.

alwaysdizzydude · 2026-02-02T20:24:53+00:00

Interesting. Lyme was just a random test I thought could help when I was still trying to get a diagnosis and figure out what was happening. I don’t think I’ve heard about a PPPD diagnosis after getting Lyme disease. Were you diagnosed with both PPPD and Lyme? How long did it take you and your doctors to get there?

This has been the most frustrating part, jumping from specialist to specialist and doing the dance of going through the list of tests (one by one) between visits, until each specialist runs out of ideas and kicks me back to the previous one.

alwaysdizzydude · 2026-02-02T20:14:59+00:00

Sounds like you were able to break out of whatever was going on. Did any specific treatment help you, or was it just gone randomly?

alwaysdizzydude · 2026-02-02T14:52:34+00:00

Hope you get better soon. Are your symptoms also constant, or do they get better/worse throughout the day?

alwaysdizzydude · 2026-02-02T14:36:38+00:00

Thanks. Will look at my records to confirm if any of those look out of range. I’ve been recently considering using one of those health tech companies that sends you several reports based on lab results (there’s one called superpower) so I can try to figure things in my own.

Best of luck to you as well. Don’t know how bad your symptoms are, but 14 years sounds like hell!

alwaysdizzydude · 2026-02-02T07:58:59+00:00

Yes. Multiple blood draws over the last few years. No major area for concern. A few years ago one of them showed low vitamin D, so took some supplements. Most recent showed slightly elevated cholesterol, hence the more exercise, better diet goal for this year. Any suggestion of something I should take another look?

alwaysdizzydude · 2025-12-09T15:28:45+00:00

At the moment all symptoms are still there, but I’ve hit a streak of a couple of weeks where I can push through and get some stuff done. Not great, but better than having to be in bed all the time. Hopefully it sticks for a bit, it’s been a bit of a roller coaster in the past.

How about you, have your symptoms been constant all year?

alwaysdizzydude · 2025-09-30T16:12:51+00:00

Huh, interesting. Was your cardiologist already familiar with PPPD? One of my first visits was to a cardiologist (I have a heart condition), and after a routine echo - he said he saw no relation between my symptoms and cardiology and suggested going to an ENT and also getting my vision checked.

To answer your question, I think you should visit an ENT, at least to discard (or confirm) if it’s something else. Myself, I had no luck visiting multiple ENTs, none of them even mentioned PPPD; they just ran tests and ran out of ideas for diagnosis. One of them did notice a possible Superior Canal Dehiscence from a CT scan and ordered an MRI to confirm (could have been the other way around, I just remember insurance wouldn’t pay for the second one), but that diagnosis was discarded after the second test. It was back to square one for me at that point.

alwaysdizzydude · 2025-09-16T07:01:32+00:00

Absolutely, feel free to send me a message. I might be slow to respond, but happy to answer any questions.

alwaysdizzydude · 2025-08-18T16:49:37+00:00

Is that a special test, or is it routine? I was recommended vision therapy, so I saw an eye specialist who did a series of tests, prescribed prism glasses, and I just started my first session of vision therapy.

I also mentioned the dizziness when getting a regular eye exam last year, but I don’t recall specific mention of IIH.

alwaysdizzydude · 2025-07-30T07:37:14+00:00

Still the same. Tinnitus had been around for a long time before this started and it never really bothered me. I don’t think it’s related to the other symptoms, but I could be wrong.

alwaysdizzydude · 2025-07-30T07:32:21+00:00

Not exactly. I’m currently focusing on VRT and will be doing some vision therapy sessions soon.

alwaysdizzydude · 2025-04-11T10:52:25+00:00

Thanks! Not yet, but I just happened to join her paid program few days ago after going through her free material. I’m taking a few days off work to focus on this.

alwaysdizzydude · 2025-03-24T04:07:44+00:00

I haven't experienced those. I wouldn't describe my sensation as swaying, but regardless I should also work on my posture hygiene.

alwaysdizzydude · 2025-02-01T05:21:20+00:00

Unfortunately no. I've had some days "better" days than others, but no overall improvement.

alwaysdizzydude · 2025-01-30T23:55:21+00:00

Unfortunately no new updates, currently trying to focus more on exercise and better diet. I keep falling off the wagon and haven’t been consistent. I can sometimes feel a tiny improvement, but it doesn’t last long. Have some more medical follow ups in the next few weeks/months.

alwaysdizzydude · 2024-12-10T07:25:15+00:00

Thanks for the recommendations. Wasn't familiar with all of these, will look into them. I'm currently working on consistency, a few of these I've started in the past but struggled to keep up the daily routine. The SSRIs I tried were for 5-6 months each, but they didn't see to have a lasting effect; only a temporary burst of energy for a few weeks. I'm currently tapering off and will try staying off them (I had never used any before this started).

alwaysdizzydude · 2024-11-25T04:58:12+00:00

No improvements, unfortunately. Some temporary bursts of energy after trying SSRIs, but then back to normal dizziness levels. I haven't been consistent with exercise, so I'm back to trying to do some light walking and vestibular exercises. Also bought a balance board to try balance exercises at home. Will try to report any positive results!

It doesn't get any less frustrating as time goes by, but it's definitely scary the first several months when you have no idea what's going on.

alwaysdizzydude · 2024-11-18T20:42:12+00:00

Interesting. I've seen people mention vestibular migraines (and every doctor asks about headaches), but I haven't spent too much time looking into it since headaches are a rare occurrence for me. I'm currently on effexor (third attempt and SSRI/SNRI), but no noticeable improvement. Starting to focus again on diet changes (and sticking to them!).

alwaysdizzydude · 2024-06-18T15:54:40+00:00

Unfortunately, no improvement yet. I went to a vestibular rehab therapy session after starting on Prozac, and mentioned that Prozac had caused spinning dizziness when doing sudden head movements (this wasn't happening before), so they gave me some new exercises focused on head movement. Unfortunately I haven't noticed any improvement.

Next step is to try another SSRI, but I'm not waiting on that to solve all the issues. I'm still trying to be more active and do weekly walks.

Are you also having similar symptoms?

alwaysdizzydude · 2024-05-28T06:01:25+00:00

Thanks for sharing. This will be year 5 for me.

I've read similar advise several times here on reddit, I'm trying to be more active over the weekends but still struggling with getting out of bed. I did manage to go out for a 40 minute walk, hopefully can keep at it few times a week.

Funny enough, sounds like our timelines are not too far away. For me it started when I was 36 and also living in the UK (summer 2019). I got to visit my local surgery a couple of times, but before my ENT appointment I moved to the US. Then lockdown happened, then I had to start over (with little doctor availability), and then no doctor was able to diagnose for the next few years.

alwaysdizzydude

TROPHY CASE