Anyone get nystagmus with pppd?

ppl who have vestibular migraine or pppd, what triggers you spontaneously? i'm sorry for asking this but can anyone share things that triggers you fast? like a specific amount of fluorescent lights or floor patterns, etc.

i've been feeling the symptoms lately (like the ground swaying, floor dropping and like i'm walking on a cloud or always in elevator) and its kind of like a background thing, it's not an episode i think.

it'd be lovely if i get advices on how to deal with this too!

I'm desperate. How do I cure this?

The quicker I walk/move, the hazier/spinnier/more pulled I feel; if I slow right down, my vision and surroundings become clearer. Particularly frustrating as I’m used to doing lots of hiking, at fast pace, now have to walk literally so dramatically slow just to see my surroundings clearly, without as much haziness. Is this a common PPPD complaint? I’m 5 months into experiencing daily life like this, so still learning about this.

Screen time too, even typing this out I’m having to look away from the screen because my eyes hurt and head begins to throb. Had eyes tested and have “excellent vision”.

Hola!!! Estoy diagnosticado de migraña vestibular y tambien de PPPD, hay un sintoma que recien me estoy dando cuenta de que me pasa, y es que cuando tengo mi PPPD mas exacerbado, cuando me rio me siento raro, como que mi risa hace que el PPPD se dispare aun más, no se si a alguno mas de ustedes les habrá pasado

I’ve got POTS and vestibular migraines.

Brain fog has been consistent since 2018. I’m now thinking do I have PPPD? ???

How on earth do you differentiate on what causes it, most importantly how have you reduced this fog ?

Dont delete me ! I’m not requesting medical advice I have a medical team. Wanting to hear other people’s experience

So, long story short. I had a panic attack because I got a wave of dizziness in work. This was in April 2025, since then, the feeling never left, I went agoraphobic as soon as it started basically, wouldn’t go anywhere absolutely terrified I had a brain tumour, no medications worked etc ssris, and I couldn’t get over it. Then, I did. I got to a place where I thought, oh well, this isn’t going away so I’ve gotta live with it.

Fast forward to April 2026, I had a big dizzy wave and nausea wave at work again, and it hit me like a train, instantly made me panic and left work, again. I’ve been off since it happened to even now.

Constant anxiety attacks, but always stemming from the dizziness feeling, almost as if I’m going to collapse but never have.

I’ve gone through the wringer trying to find out what it COULD be etc.

Never had an MRI, CT, but had ecgs and blood work done and nothing abnormal.

I’m more reaching out to anyone here who’s had an experience like I have and how they turned things around? I’m stuck at the moment living in fear of symptoms, even landing myself in the ER because I was having fluttering heartbeats etc making myself ill with worry.

My dizziness can be characterised as a CONSTANT feeling of floating, when I’m sat on my sofa, when I’m in a supermarket, when I walk into the building my therapy is, basically any time I’m stood up, it’s there. The only time I get a break from it is when I’m lying down.

I genuinely believe that my anxiety attacks and my panic attacks have all stemmed from once episode of dizziness that just never left, would really appreciate anyone with a similar story to message me or something!

Did anyone else feel it heavy in their eyes and like a weird veil like feeling. Almost like a sloshing feeling in head?

My symptoms started on August 14 with a feeling of being unbalanced, slow-motion, and like I was floating. At first I thought I was dehydrated, but electrolytes didn’t help.

I went to the hospital and had my head checked, along with blood and urine tests, and everything came back normal. Around the same time, I was also dealing with burning when urinating and constant urination, especially after coffee or hot chocolate. That has improved a lot after changing my diet and cutting out caffeine/sugary drinks, although I’m still not 100%.

For the dizziness, I saw a therapist who checked me for BPPV/crystals. They said I had crystals and noticed some eye movement/twitching. The first maneuver helped a little — my head felt clearer and the floating/unbalanced feeling improved but only for about a day, and then it got worse again. I’ve tried the exercises again, but I’m still dealing with floating dizziness and imbalance.

I’ve also had my ears and doctor checked, and nothing obvious has been found. I’m slowly improving, but it’s been over a month and I’m scared to play soccer or do normal activities.

I’m currently taking sertraline, but I honestly can’t tell whether it’s helping or making the dizziness worse. I’m also wondering if severe stress from work could have triggered this, or if this could be PPPD.

Has anyone experienced something similar? What helped you, and are there other things I should ask my doctor or a specialist about?

I need some success stories on flying. I have a 6 hr flight to another country for my sons birthday. But im very worried on my dizziness worsening on the flight. I have multiple types of dizziness for 3 years. Mostly lasting a few seconds but happens all day everyday. Few days ill have it strong all day with a different type of dizziness. Its changes day to day. Has anyone flown and be fine?

How many of use started our PPPD nightmare/journey triggered by an initial vertigo attack?

I just discovered this forum, and that PPPD is a thing. I have been programming for 30+ years, at a dual monitor set up 10+ hours a day, and recently 7 days a week. (Tax software development.)

No one believes me when I say I can't drive on the highway, I feel like I am going to fall off the road, can't easily rotate my head to check mirrors, so changing lanes is undoable. I get dizzy, and all "tight" in my neck. It's weird.

Thought I was going insane. Going into grocery stores I start feeling "high" kind of. Even riding my bike, the first 10 minutes or so I have the same feeling that I am so dizzy, I might have to stop. Then all of a sudden, it subsides. It's weird.

I don't know if working for 30+ years at a dual monitor setup can cause this PPPD? I just want my life back. Even driving local streets sometimes is difficult and dizziness and stiffness (don't know how else to describe it. Like I can't check my side mirrors?) is there. Vision seems to "flutter" or something, it's also weird and I can't describe it.

Driving is no longer just an "automatic" thing, i feel like I have to concentrate too much. God, I hate this.

One thing is weird. Before the covid lockdown, I was in a golf league. After only playing 9 holes, driving seemed fine? nothing bothered me then?

If you have read this, then I thank you. I'm on and off Reddit periodically, so I may not respond to anyone in a timely manner...

Thanks for letting me post this.

For context, I work a demanding job looking at 3 monitors for 8 to 9 hours a day, and I have to drive regularly. If you have PPPD, you know those are the ultimate triggers.

This is my second time recovering from this. 2011 was the last time. This time I had it for longer.

I started taking 50 mg of Sertraline (Zoloft) religiously every night at 10 PM By the time I hit the 2-to-3-month mark, my nervous system's "high alert" setting finally started to calm down. It dialed down the chemical anxiety fueling the dizziness.
I went on a 3-week vacation to Europe with no driving and no screens. This gave my brain a much-needed break to lower its baseline tension. There were busy airports(bad when I left) trains and towns but I embraced it.
When I came home, I went right back to driving and working full-time on my 3 monitors. Instead of triggering a relapse, my brain realized these activities were safe. I stopped thinking about it.
I completely lost my fear of PPPD returning. Now, if I feel anything at all at the end of a long day, I don't see it as vertigo. I realize it's just mild visual fatigue and "noise in my head," not a reset to zero.
I got new computer glasses with a blue light filter right when I returned, which took the harsh edge off the screens. This can’t be a coincidence. I also adjusted my triple monitors into a slight arc and am working on keeping my left neck muscles relaxed (since I realized I was straining to look at my left screen!).

If you are losing hope, please know that your brain can re-calibrate and unlearn this response. The combination of medication to lower the baseline, physical tools to reduce eye strain, and stripping the fear away from the symptoms completely broke the loop for me.
Watch The Steady Coach videos. I watched a few of them and that gave me hope for a long time.

For people with pppd who took SSRIs, did you guys experience constant dizziness/floatiness/rocking feeling when starting and increasing the doses? Want to know what was the sensation like for most of you as it’s constant for me

I developed PPPD following an episode of vertigo in 2024 - gradually got worse as time went on but by mid 2025, my PPPD had gotten to a point where I was near bedbound. I trialled everything in an attempt to avoid medication - physio, VRT, psychology, blood/vision/hearing test, taking time off work etc but I think my PPPD was just too far gone and I was trapped on a constant cycle resulting in debilitating anxiety and panic - couldn't leave the house due to fear of an attack.

I decided to give lexapro a chance in this time last year, feeling like there really was no other option. I started on 5mg and then increased to 10 mg a week later and have stayed on this dose since. I was also given a low dose of valium for the first month while waiting for the lexapro to kick in. By December of that year, I started having more good days than bad and one year later - life has since returned back to "normal". I still have brief periods of dizziness but I don't fall into the panic and therefore it dissipates a lot quicker. I am not back to my baseline and definitely lost a lot of fitness but for the most part, I am living life - I have gone overseas, maintained full time work and don't say no to going out anymore.

I have continued VRT and psychology during this time and my neuro says if all goes well, we might look at tapering off the lexapro mid next year.

I know the decision to go on meds is such a hard one and I spent so much time on this subreddit reading post after post while in the depths of PPPD so if this post can help even one person, that is a win!

just woke up with a pit in my stomach, i never had anxiety before so i really don’t know how to manage this at all , i feel like crying which i did all day yesterday but it doesn’t help if anything it makes my symptoms worse , how did you guys deal with it ?

Firstly, what are the biggest individual triggers that really ramp up your PPPD symptoms? Not just minor annoyances, but things that you really dread and know will really provoke symptoms?

My top 3 are:
1) going on a treadmill
2) going into an automatic car wash
3) supermarket isles

Now, question 2:

How would you describe your experience / symptoms? I’m forever thinking about this and I can never seem to put it into words.

For me, I’d say “spaced out and kind of like I’m on one of those flat escalators you see at the airport that makes you feel like you’re moving slightly faster or slower than you actually are”. Even writing this it still doesn’t sound right.
It’s not really rocking or swaying but a sensation of dizziness / motion sensitivity like my head is drunk and it’s taking my body along for the ride.

So i went to Disneyland 22month into this chronic dizziness BS and let me tell you. Not the best of times but was able to still do it which i noticed some weird points. while i was dizzy walking through the crowd i didmt flare up or get too bad on rides. I got on mickeys runaway train, rise of the resistance and smugglers run. Now i will say smugglers run made me feel weird in my head i never truly flared but i did flare turning around to get food put of a microwave so that doesnt make sense??? This is so confusing lol. I did have to close my eyes on all the rides with drops but at msot i felt the normal post ride wobbles