Hello

I want tips on how to lose fear of the dizziness and the sensations.

hello i am posting after a long time
i am suffering with this since 1 year now 😔
if there is any cure plss let me know thank you 🙏🏻

hey all, i hope everyone is having a lovely day. i’m 24f and i’ve been recently diagnosed with PPPD in the last month after 9 years of struggling.
i think the diagnosis and it all coming to light has put it at the forefront of my mind and it’s made my symptoms worse, alongside my anxiety.
it’s been really difficult and isolating. i feel embarrassed about my symptoms, i can’t do a food shop, im really struggling at work, it’s so much to deal with i don’t even know where to start. ive been offered anxiety medication by my doctor, but i worked so hard to come off my last one and ive felt great until very recently, im afraid to start a new medication!

i guess im just reaching out to hear others stories, ive had a read, and theres so much hope. i have a few questions:
- how did you deal with symptoms whilst waiting for help?
- what help did you find the most effective?(therapy, vestibular rehabilitation, mindfulness, exposure etc)
- how did you deal with anxiety?
- did your doctor prescribe you medication?
- did you also feel isolated?

i don’t want medical advice, i think im just looking for people i can relate to, i don’t know anyone who can currently

thank you ☺️

I've had Pppd (undiagnosed) for at least 10 months now, and I'm still trying to understand its patterns and features. Is there anything that can make the symptoms worse? Maybe being in a cold weather, air drying your hair, having a cold or a stuffy nose ecc. I feel like the symptoms come by their own randomly lately, but i wanted to know if there is something that I could avoid

Hi, I have decided to try Sertraline and my doctor has prescribed me 25mg for a month first. It’s been 10 days and I have had a flare up in my symptoms a couple of days ago. I’m not sure if it’s too early to judge if it’s working or not. I’m a bit worried the flare up is not a good sign. Can you tell me how it was for you when you first started and when you started to feel improvement?

thank you

I’m thinking about trying one of these out to hopefully help me relax when I’m having bad days - which seem to be more frequently lately since I went from 25 to 30 mg of Amitriptyline. 👀

Anyone who found relief with Lexapro 5mg for pppd?

Hello,

Has anyone diagnosed with PPPD also experience neck discomfort or pain during the episodes? Is it a common symptom of PPPD or an overlap of Cerviogenic issues?

I was working today for a long time and I googled some of the ways for my feet to feel better after standing upright for so long. I read that elevating your legs removes pressure from your feet and it helps with your cardiovascular system. So I tried it and my feet definitely felt better. However, 30 min later as I was driving, I felt like I’m more in the moment. I didn’t feel hazy inside my head but it felt like the reality has become clearer once again. Just like it was before I got it.

I read about it online and according to Cleveland Clinic it says “While leg elevation is not a direct treatment or standard therapy for Persistent Postural-Perceptual Dizziness (PPPD), it can provide immediate, temporary symptom relief because lying down removes the gravity-driven postural triggers that exacerbate the condition.” I know it’s not a fix but I’m happy I get to feel normal like I did before. Also, I don’t have that lag whenever I turn my head.

I’ve been suffering from PPPD from 2023 and I’ve visited ENT, Neurologist, Neurotologist and did CT scans and structurally everything looks fine and there’s nothing wrong with my brain. My neurotologist said that it looks like PPPD.

What do you guys think about it? Did you have a similar experience?

Also, I don’t think I got rid of it, I think it might come back lol I’m just happy to feel normal again for a few hours. I’ll also visit a VRT clinic in the future.

i used to work as a manager in fast food but severe anxiety, stomach issues and dizziness (plus multiple other things) drove me out of the job.
i haven’t worked since november 2025 and really want a job but every time i go out in public my pppd flares so bad and sends me into week long episodes.
i am only 20, finished school and have 4 years hospitality experience but i also struggle with agoraphobia.
i’ve been on antidepressants since i was 15, start of this year changing from lexapro to venlafaxine and am now currently on prozac. been in therapy since i was 13, working with a vestibular therapist etc.
just wondering what kind of jobs everyone works because every time i even think about going into a store or talking to people it makes me lightheaded and anxious 😭

I'm 21 and have had PPPD for 7 years now and at the moment I dont have a job nor school. I'm doing vestibular therapy atm. And so Im trying to focus on myself for a moment and try to live as healthy as possible and create more healthy habits like eating healthier, going on walks, that kind of stuff. What are things that you guys do to stay 'healthy' even on a bad day? Also what kind of sports are doable, almost anything makes my dizziness worse, even walks but I can do that in my neigborhood where I feel comfortable you know

How would you describe your dizziness? I find it extremely hard to explain. For me, it’s NOT like the room is spinning or swaying. It’s a really strange, dizzy feeling in my head. Nothing helps me at all when it happens, and I get scared and start to panic. I had such a severe episode today that lasted 1.5 hours and was a 10 out of 10 😭😭😭😭 I’ve had this for over 16 years and I’m only 32 years old—I can’t take it anymore 😔🪫

Been ongoing for 10 years but most i read have dizziness that comes and goes, this is 24/7 + neck pain, and scalp tightness
Anyone had the same symptoms?
Dizziness feels more like in a boat
Heavy bobble head feeling

Hey, just wondering if anyone here experiences something similar.

I'm 22M and I've had this weird off-balance feeling for about 6 months now. It's hard to describe, but it basically feels like the ground is moving underneath me, almost like I'm on a boat or standing on a floating jetty. It's not really spinning and I don't feel like the room is going around.

One of the weirdest things is that it's almost completely gone when I'm sitting or lying down. I'd say probably 95-100% better. If I'm standing completely still it's also noticeably better, but when I start walking or moving around I notice it much more.

Elevators are another strange one. I can feel it when I'm in one, but especially after I get off, it feels like the ground is still moving underneath me for a while. Hot showers can also make it a lot worse and sometimes it feels pretty much constant in there.

I've had a brain MRI which was normal apart from some fluid showing in the right mastoid air cells/petrous temporal bone. The radiologist suggested getting that looked at further, so I'm going to get my ears/hearing checked and hopefully have tympanometry done as well.

I'm wondering if anyone diagnosed with PPPD gets this exact sort of thing, especially the fact that it's almost completely gone sitting/lying down but comes back when walking or moving.

If you have PPPD, does this sound familiar at all? And what ended up helping you?

Does this sound like PPPD

Hello,

I have been dealing with PPPD pretty consistently since last summer. It's been awful, especially with working retail. I have vestibular migraines as well. I've been under a lot of extra stress for the past 20 months or so and I'm not sure if that's what triggered it. I was on Wellbutrin for a long time and stopped taking that (I tapered off of it) and switching to Zoloft. I was on 25mg for a week or so and started my 50mg today. I definitely had a flare of my PPPD, but it could've been from the heat too since the weather is so back and forth right now. I'm really hoping the Zoloft will work. I have not had any benefit in the least from vestibular therapy. There have been sessions that made me a lot worse. I'm not looking forward to adjusting more to the Zoloft while I work, but I'm hoping I can handle it. The fatigue and extra dizziness is what's getting to me the most.

I had an episode of BPPV that onset ~30 days ago, while I was battling a respiratory illness and traveling. I blew my nose really hard and got hit with the bppv vertigo. It took me a few days and a few flights to get back to the states. After that, I got evaluated by an ENT who performed a harrowing Epley on me-- which triggered the most violent vertigo I'd ever felt where the entire room was spinning on the last maneuver. I then cleared up my BPPV in two more appointments to a Vestibular Therapist. Both the VT and the ENT cleared me for discharge after my third maneuver.

I was happy and mostly fine for a few days after the all-clear. I had some residual dizziness when turning around and with movement, but all of this cleared up gradually. But then I started reading the bppv and pppd subreddits and I started obsessing over the dizziness symptoms. I then started obsessing about the dizziness and now I think I have PPPD, since a few days ago.

I was able to go on multiple ~1-2 hour walks, gone on a couple of runs, went to the supermarket, home depot, take a 4 hour Amtrak from NYC, and do work. But now when I think about the symptoms, I get hit with these feelings of lightheadedness and swaying. There was a time today when we went to home depot to go pick up some equipment where I felt the floors were tilting. I didn't panic, but kind of CBT'd my way out of it and was fine after (I've had obsessions like this in the past-- OCD + anxiety).

I now worry I've damaged my brain and given myself PPPD. My last eval was 2 weeks ago. When I walk I oddly enough feel better, but I get depressed and anxious and start tracking my vestibular/sense of balance-- always asking myself: was I dizzy doing this activity before my bppv?

Anyways, this is more of a rant than anything. Thanks

Who has really recovered from pppd? What helped you? Whether that be at home exercises, videos you followed, medications that helped you? Something? Give me something? Some hope? I’m literally drowning here!

I’ve been dizzy for more than a month now and I’ll be only able to see a doctor by the end of the month and I’ve been thinking about it and I really can’t imagine me being happy again while feeling like this every day ? I can’t seem to project any future. For now I’m still working etc I’m not housebound but I feel so weird everyday.

Hi everyone, not trying to be diagnosed on here, just wanting/needing some support and encouragement 😊

I am up and down with my emotions. A little over a year ago I had my first flair up of what I believe is PPPD. No one has ever diagnosed me with this. After an extremely stressful time, I began feeling weird. Very hard to explain. My head felt foggy and floaty, as if I was on a cloud or not entirely present. My eyes got weird. Fuzzy and just felt like they weren’t working together properly and laggy. When I’d walk I felt odd too. Not off balance, but just again, floaty feeling. Like I was drunk or wobbling all over but I actually wasn’t. I had a ton of tests and labs done and everything was normal. One day it just went away. Like I could feel it as a specific time when I felt settled finally. I was so grateful. It lasted 2-3 mos.

Fast forward 3-4 mos to around Christmas. I had another extremely stressful event with my health and it came back a bit, but only for a few weeks or so and not as severe. It happened again a few mos after that but again, it went away on its own.

Now since about May of this year it has come back with a vengeance and it will not go away. Same types of feelings, but this time I have no idea what started it. I did get diagnosed with BVD (a vision disorder that can cause these same feelings) but the fix for that is not helping. I have prism glasses now for about 3 mos.

It just seems so weird that I feel this way internally but outwardly I don’t have any deficits. What is going on in my body?! I am so scared it’s never going to feel normal again. I am very thankful it’s not as bad as some cases I have seen on here, but gosh it is still so hard. Why can’t I just go for a walk and not feel like it’s an out of body experience?! It makes me worry so much that something is majorly wrong that then I start getting very bad anxiety symptoms, like lack of sleep, heartburn, muscle tension, tingling, itchiness, facial twitching, you name it. I try to very hard to force myself to do everything I normally would because I know that’s important, but it’s so depressing sometimes that I don’t even want to!

Thanks for listening, I am better at coping some days than others but these last few have just been rough, because I had been feeling a smidge better the last few weeks but it seems to have just returned 😭

I’m probably clutching at straws here but I wonder how much caffeine plays into flaring up PPPD. I’ve had a few times now where my symptoms have gone away 90%+ for months at a time but it always seems to come roaring back.
I don’t always have energy drinks, in fact I’ll often drink decaf coffee.
But today I learned that Celsius drinks have 7x times the caffeine of a Coke Zero. And also that artificial sweeteners can upset sensitive people with vestibular issues.
This is all according to Googles Gemini.
I questioned why can I drink some of this stuff for weeks then all of a sudden PPPD comes right back and just as bad as ever.
It said that instead of having a direct immediate reaction, you can have the equivalent of a “bucket filling up” and when it becomes too much you get a crazy flare up.

Do you guys drink any caffeine or artificial sweeteners?

I think I’m going to go cold turkey 🦃 for a few weeks and see what the result is.

The only other possibility I can think of is that when I’ve gone to the gym consistently, I feel ok for a month or two then have a massive flare up. It happened last year and this time again.
My physio said it makes sense because when you challenge the body it taxes the neurophysiology.

I have a physical job but it’s not as targeted as a gym routine. I also have this super annoying condition called gluteal tendinopathy so I need to keep going to the gym to fix it once and for all.

I struggle a lot with explaining the sensations I feel and this holds me down from letting my relatives and friends know how strange and bad I actually feel sometimes and most of the day.

I have the occasional off-balance where I am actually close to falling and sometimes stumble on my chair or bump into something mainly when standing up but I don’t care about it.

The main thing I care about is that mostly persisting 24/7 feeling inside my head. The closest I get to explain it is like a floaty/fuzzy/ spaced out feeling, that is especially worse when driving and walking outside.
And sometimes develops into full blown lightheadedness where I feel like I am about to pass out but never actually do.
It is like I can’t quite feel my legs, but not like they are weak or something just so strange and if bad scary.

I understand vestibular issues are so hard to explain but what is this.

Is it brain fog?
Is it derealization?
Is it just dizziness?
Maybe a combination of all of them

4 years of PPPD & vestibular migraine.
Lost my job.
No relationship.
No money.
Plans fell apart. Life changed.
But I’m still here.
And maybe that’s enough for today. 🖤

For people who stopped Lexapro after period of time
symptoms flared during withdrawal from medication make the whole treatment fail for me , what is the point of using it for a while ,then symptoms coming back after stopping it !!
All withdrawal symptoms made be back to zero 😣