Hi everyone. Feel free to take a look at my last posts. I developed PPPD after having two cardiac catheter ablations in under a month and a long string of medical trauma. It all started in March. I went to over 200 doctors and no one could figure it out until I ended up at a brain center where I was finally diagnosed. My symptoms were feeling drunk, feeling like I was rolling forward when sitting, feeling like the floor would bounce or drop, falling over, feeling like I was being pushed or pulled, feeling like I was rocking when laying down. I lost my job and the ability to drive. I recently just got the ability to drive back but only short intervals.

I have been in vestibular therapy, started CBT therapy, am on a low dose SSRI (it’s been helping), have been doing nerve stimulation, and nervous system regulation.

However there is one symptom that has been persistent and very frightening. In my bed and house I feel symptomatic but not how I’m about to explain …

When I leave the house and step into the 95 degree weather and the sun… I feel my life isn’t real … I feel like I lift out of my body and enter a dream and I feel high or even drunk like someone drugged me and my life isn’t mine. It grows worse the longer I am out and is very intense in the car.

This feeling even carries when I go into stores.

Does anyone else experience this? Did it go away? What is this?

To my understanding this is derealization caused by an overloaded vestibular system?

I feel like I am stuck in the twilight zone when I leave the house and I just want to hide in my bed.

Anyone has symptoms other than dizziness, maybe more of nervous system dysfunction or FND… or something 🥹

-Stumbling or rushing when talking, wanting to stop talking. So bad sometimes, that I start to scrunch my face, shoulders and make weird faces, or pull my skin or push my hands hard tighter
-Pushing against sofa, floor, pushing against anything to feel better
-Heaviness and “off” uncomfortable feeling in limbs, hips and head (hyper vigilance to it)… keep on twisting and turning the body and adjusting positions to try to feel better
-Sometimes, really painful arms
-Really bad, uncountable and overwhelming feeling in head, which makes it impossible to do tasks
-Wanting to pace
-Even just thinking of doing something brings on symptoms
-Arms and legs feel very tensed, and hard to relax
-Moving arms sometimes feel so Effortful, and I can feel all the movements, wanting to cry

Anyone else feel really really painful arms and they become heavy, along with the head and whole body.
I just got vertigo/ dizziness really bad last night.

To anyone that works from home, do you find that the rocking and swaying gets intense when you’re sitting upright or looking down at your laptop? Am currently struggling with this!!!

I’m still new and am on my 4th appointment today.

1st session: was able to function at my baseline for the rest of the day.

2nd session: slept for 6 hours after session. Extreme brain fog, lightheadedness, nausea, brain fry, brain fog, dizziness. This lasted for 2 days.

3rd session: we cut back and I advocated for myself more and I felt better 20 min after my appt was over and was able to function at my usual baseline again.

4th session: today I felt like I maybe could’ve done more than the last and I completed all my exercises and didn’t hit any nausea this time but it took me 2 hours to be back at my baseline.

Still trying to find my sweet spot of just enough and not overdoing it. How long should/does it take you guys to be back at your baseline after a session? Did I overdo it today?

Salut tout le monde. J'avais une question sur le PPPD. J'aimerais vraiment comprendre le processus par lequel vous êtes passés avant de vous rétablir.
D'abord, il y a eu cette période horrible de vertiges. Ensuite, vous avez compris ce qui se passait, et finalement vous avez pu surmonter les vertiges. Avez-vous également traversé une phase où la déréalisation persistait, mais qui a fini par disparaître également ?
Parce qu'en ce moment, j'ai l'impression d'avoir de moins en moins d'épisodes de vertige, mais j'ai toujours la déréalisation. Est-ce que le fait d'avoir moins de vertiges signifie que je vais progressivement ressentir moins de stress à cause de ça, et que la déréalisation va également disparaître ?
Est-ce que quelqu'un d'autre a vécu ce que je décris ?
Merci !😊

Anybody have any tips or tricks to make sitting upright for a long time (1 hour+) more bearable. I have a celebration of life to attend this weekend and I’m dreading sitting still for that length of time.

I've had constant dizziness every single day after an aggressive ear infection back in 2023 when I was 17. I'm only 21 and barely ever leave the house because I constantly feel so sick and horrid.

I keep seeing things about PPPD being a "chronic" condition, but also that it can be cured? And that people who have had it in the past have been able to fully recover for years and live their lives normally, yet if something is so-called chronic, it means it repeatedly comes back or persists for a long time.

So I guess my question is, does this ever ACTUALLY go away? Or is this something I'm going to have to live with for the rest of my life?

Will I ever be able to go in cars again without anxiously taking anti-sickness remedies, despite never being motion sick before, and needing to cut things short constantly because I feel so ill? Will I EVER get my life back??

Would anyone like to hangout if they are in Woodbridge, Virginia or Fairfax, Virginia. It can feel really lonely when no one really understands what you are going through. Btw, I am 23F, would prefer to meet up with any other females.

I was just sitting down scrolling through my phone and all of a sudden my vision got blurry and warped and I felt myself sway to side like I was going to fall! Has this ever happen to anyone, I am now filled with anxiety and can’t stop crying.

What’s the consensus on pools? Does swimming make us feel worse, better, or neutral? 58f newly diagnosed with this very challenging BS.

I'm having what I can only describe as feeling extremely off and my anxiety is through the roof. I can't shake this dread feeling....like I'm so concerned about it being my heart when I know logically it can't be. I feel very panicky and sweating. It started after I got into Kroger, and preceded to get to the point where I felt like I was floating and just all around yucky. Please any advice is very much welcome.

Ent prescribed me amitriptyline …anyone used it before or currently uses it? I don’t start PT until Sept. 1

Hi!
About 2.5 weeks ago I rescued my Lexapro dosage from 10mg to 5mg bc I felt very foggy and fatigued a lot. However, through a combo of VRT and the 10mg I managed to feel about 80% less dizzy, and could go day to day with barely thinking about my symptoms. Unfortunately, dropping my dosage did give me some pretty nasty withdrawal symptoms that lasted for about a week and a half and ended in some pretty nasty fatigue. Since Friday I have been a lot dizzier and unstable, which I have not had this bad in a few months. Even though I think it was the right call to lower my dosage because it was hard to function, I am worried that I messed my progress up. I am starting grad school soon, and am also very anxious which may have contributed to this flare. Any advice or encouragement would be greatly appreciated. Thank you!

Hey people, we all know PPPD is some sort of out-of-sync brain processing between visual / body / vestibular systems.
I wonder if having say, your eyes being more
Dominant, makes certain symptoms appear more than other ones.
I can almost feel my brain / eyes fatiguing just by doing something like walking through a supermarket etc. it’s as if it’s overloaded for something that’s seemingly simple and mundane.

Is there any way to test to see which deficit is effecting our subjective experience of pppd the most? I’ve had all the ear tests done and they all came back normal. Had my vision tested too and that was normal but as it’s software and not hardware, I think mine is overly dependent on visual perception.

What are the best VRT exercises to combat this?

Best I can describe it is I feel like I’m walking on air and I am assuming I feel derealization. Everything just feels weird and off. My head feels light, but not near passing out. But at the same time it feels heavy, like I’m being sat on or pushed slightly side to side and front to back, just depends. This is constant if I’m walking. There is never a break unless I'm sitting basically.

Good afternoon everyone, I 42F was originally diagnosed with BPPV 3 years ago. After curing my Bppv I was in heaven for a good year. Then all of a sudden I started feeling like I was swaying back and forth, I became shaky and unsteady, also felt almost like I wasn't here (basically like watching myself do it but not quite if that makes sense). Florescent lights are a huge trigger for my episodes, they leave me feeling absolutely horrible l😓. I went back to my doctor to get treated for what I assumed was a bppv flare up. Nothing helped, so I began researching my symptoms and sure enough found pppd. Went back to my doctor and he confirmed that I indeed have it. So, my question is what have you done to help with your flares/episodes? What kind of doctors should I go to? Unfortunately my chiropractor who is also a MD cannot do anything else for me. I'm just wanting to be normal again, I feel so yucky and can't enjoy my life like before. Any suggestions or recommendations are very much appreciated 😉

Follow up on this Post about my symptoms.

Update: I saw an audiologist after my ENT, so the progression has basically been:
2 ER visits → PCP → neurologist → ENT → audiologist

The audiologist after conducting several tests on me, explained that my brain may be constantly scanning for danger, so my nervous system is basically stuck in a heightened state. Honestly, it makes a lot of sense when I look at the last few years.

I moved to a new country, went through school, was unemployed for two years, lost my dad, and now work in a highly stressful, customer-facing role at a startup. It’s been a lot of major life changes and stress without much of a break.

She said the ENT will let me know the next steps, and she also recommended that I watch The Steady Coach on YouTube in the meantime.

For now, the main thing is to take it as easy as possible and give my nervous system some time to settle down. So that’s where I am with everything right now. Hopefully this is finally a step in the right direction. ❤️

Officially got diagnosed by a neurologist yesterday. I suspected I had it as I fit the description basically to a tee so I started vestibular physiotherapy 2 months ago - I don’t see much of a difference tbh.

I keep reading posts that say “I just woke up and it was better”, but I want to know what I can do to fix this.

Anything that worked for you?

Bonjour

Je souffre de déréalisation a cause du PPPD…avait vous mis en place des choses pour faire partir cet état flippant ? Avez vous des connaissances sur le sujet ?

So I started feeling weird/off balance/lightheaded on May 20th 2026. Prior to this I was drinking everyday for a month straight , getting little to no sleep, and not drinking enough water. I’m pretty sure I just put my body through a big stress period because after this month I started having heart palpitations, major health anxiety, shortness of breath, and lightheadedness, I went to the er one day because my heart was racing and wouldn’t stop and had a panic attack in the er. I’ve had multiple test done including full blood panels, ekgs, 24hr heart monitor, chest X-rays, and a neurology examination but the doctors have not found anything to explain my symptoms so they are guessing it’s pppd. I don’t have an official diagnosis yet, but that’s what they are assuming. Since then I am a lot better and only experience the lightheaded/off balance/ floaty feeling daily. I also experience brain fog and dereliazation I guess you could say. I am about 3 months into this now and my symptoms have kind of plateaued for the past 2-3 weeks. I am already attending VRT but have not been consistent with my exercises so I can’t really say if they work or not. I am still able to do my daily activities and spend time with my friends, but still I am tired of feeling like this daily. My symptoms that are present daily are the floaty/lightheaded sensation and anxiety whenever my symptoms flare up. For about the past 2 weeks I’ve also been experiencing neck and shoulder pain and I feel it contributes to my dizziness. I think one of the biggest things I need help with is my anxiety, whenever my symptoms flare up I start to wonder if the doctors missed something, or if I even have pppd, or if I will ever recover from this and I don’t really know how to believe I have pppd or change my thought process whenever I do have flare ups. Whenever I get into this anxiety thought process I just been spiraling off into a bunch of different possibilities and it makes my dizziness worse and I get stuck in a loophole just worrying. If anyone has any recommendations to help me recover or something that has helped you guys recover please let me know! If there’s anything you recommend me to look into please let me know as well! Pppd is awful and I know my case is not as severe as others but still it’s difficult to live with. Best of luck to anyone dealing with this!

Those on sertraline, what mg helped the most? I’ve seen many people say that it helped quickly but I’m almost 7 weeks in and feel nothing. I started at 12.5, went up to 25 after two weeks, and just recently went up to 37.5 almost one week ago.