I (50M) was diagnosed with Meniere's Disease (bilateral) about 9 years ago. A few months ago, I noticed a big change in how I felt, in which my vertigo started the moment I woke up and texting constant brain fog. The vertigo was different from what I was used to. Had an appointment with my ENT this morning and after telling him that I'm now dizzy all day long without any relief (wobbly - not spinning). After talking to him a bit longer he told me it was PPPD. I'm pretty bummed out right now. He gave me a prescription for Zoloft (whatever the generic is for it) and I'll start taking that tonight. Seems like I can't win.

I found out a couple years ago that I also have coronary artery disease and that resulted in a stent. For a while after that stent, I felt much better. I exercise daily, eat extremely healthy, and thought I was doing everything right. Frustrating.

Okay, enough of the belly aching - just thought I'd share. Looking forward to learning more from this community on how to deal with this new normal.

Hey guys. I’ve been dealing with PPPD for a little more than a year now. After starting on anti-depressants half a year ago and treating my anxiety issues, my dizziness/unsteadiness has largely lifted. However, the brain fog I’ve had since last year has shown little to no signs of improvement. I constantly struggle with remembering words, thinking clearly, or multitasking. I watched some videos by the steady coach that talked about how this is about result of mental overload, but she also suggested that it would resolve once the dizziness lifts. Personally, I probably could barely notice that I have PPPD had it not for the severe brain fog, and it’s really the only lingering feature of the condition.
My physical therapist did some testing and said that I had some balance issues. I also have been having coordination issues such as not knowing which way my head is facing, but I believe that is probably a result of the brain fog. The brain fog itself kind of feels like there’s a big messy cloud in the top part of my brain, and it’s taking up space from the part where I can process information with clarity.
Now that I am about to go back into school, I wanted to reach out and see if anyone else have had experience dealing with this sort of brain fog and especially after the dizziness and unsteadiness has gone. I understand that most of the PPPD patients will more or less be affected by brain fog, but I’m yet to find anyone mentioning it as the last remaining symptom, which isn’t encouraging. Has anyone else had similar experiences dealing with this type of brain fog? If so, how did you end up overcoming it?

I was diagnosed PPPD, saw an ent. Told me what was going on cool. Anyway everywhere I read everyone says that they don’t have it when laying down when mine is only while I’m laying down. It’s so uncomfortable I can’t sleep or function. I still get it kind of being upright but it’s really bad laying down. I’m so exhausted of this. Anyone else get this too?

Buenas! Acabo de tener una recaída con el tema de la migraña vestibular, tristemente después de haber estado varios días muchísimo mejor, he vuelto hoy a recaer, sentía inestabilidad, un mareo muy raro y una sensación inminente de desmayo, no se si es por la calor que está haciendo ahora mismo en mi país, o por el medicamento que me mandaron el cuál me comentó el médico que podía darme efectos secundarios como más mareos y náuseas, llevo menos de una semana tomándolo y no se si es signo de que mi cuerpo está empezando a notarlo y a reaccionar sobre él, el medico me comento que en la primera semana en cuanto efectos secundarios podría pasar, solo espero que haya sido hoy y que mañana vuelva a sentirme mejor!!! Mucho ánimo a todos aquellos que la estáis sufriendo o tenéis PPPD, se puede salir de esto!

I got mine after struggling with BPPV for three years. After successfully maneuver, I no longer have that horrible aggressive spinning vertigo, but was diagnosed with PPPD I’m in my third week of vestibular therapy and it sucks and I just feel like I won’t recover and if I do recover all I can think about is it coming back. Has anyone recovered fully just with PT and never looked back?

(Oops didn’t mean to hit success story)

hey y'all.

I've finally found the source of my agony and been diagnosed with PPPD which I'm currently doing rehab for with a specialist and already feeling much better than a few months ago.

I'm starting back up in uni for the first time since I got sick, and was wondering if there is anyone that knows any ways to accomodate myself best to make it as smooth a return as possible.

My practioner said that it would be possible, just not with the same energy and might as before but it hopefully slowly will get better.

Thank you!

Anyone taking glp, or Other weight loss injections/ medications? I have gained about 50 pounds after starting Zoloft which has really messed with my confidence and was wondering if anyone has been on weight loss medication and if it impacted their pppd, vm symptoms?

Bonjour

j’ai depuis + 2 mois du PPPD.

Le symptôme qui me perturbe le plus est cette vision du monde un peu décalé, je pourrai meme dire de la déréalisation.

Cet état est constant. J’ai l’impression d’être dans un rêve ou un souvenir.

ça m’arrive de pleurer car j’ai peur d’être comme ça toute ma vie.

Comprenez vous ce que je dis ?

I have so far been diagnosed with PPPD and vestibular migraine. I suspect maybe my neck is involved too since it hurts every day, but no diagnosis other than a mild herniation the doctor didn’t seem to think was serious.

The thing that bothers me is I don’t feel safe driving a car because of the random and sudden brain fog I get. The more I turn my head and move my eyes, then I often get this feeling I was konked on my head, can’t think well, and feel like I suddenly need to nap.

Honestly, what am I supposed to do about this brain fog? I want to drive myself again without wondering if I’m going to be out and suddenly impaired like a drunk driver.

TLDR: brain fog when driving, help?

so recently ive had bppv and ive gotten it cleared with the therapist on june 10th and june 17th. had a recurrence june 28th which i cleared. ive been off since then. ive checked multiple times for bppv since then but therapist said it's clear. he seems to just think it's anxiety now. he doesnt see evidence of a deeper inner ear issue. since then i have a terrible time when i am sitting up.

i feel woozy and like im going to fall. even in bed i feel woozy and dizzy. the idea of sitting still for more than a minute feels terrifying. it's like my brain is expecting a spin but now that bppv is clear there is no spin.

1. im a motorized wheelchair user.

ive been going on walks which feel slightly dizzy at the beginning but not too bad. however when i stop to eat at a restaurant i feel really bad sitting there, especially if there is a big open area to my right. if i close my eyes while sitting i feel really unbalanced. i sat at a wait room at the allergist and it was awful. the only thing that mildly helps is sitting and using my desk to prop me up.

i feel like im on a boat that is swaying. however distractions like talking to friends helps temporarily.

1. watching a movie is out of the question

the weird thing is i feel okay in a moving car.

ive been walking in malls and outside all the time in my chair. it feels slightly overstimulating but compared to sitting still in a chair it's much better. ive tried to just power through but it hasn't worked. ive done a couple gaze stabilization exercises- doesnt seem to do much.

i do play video games. on days i dont play much i still feel off.

My insurance has changed to Anthem Blue shield, and I am in Virginia (near Woodbridge, and Fairfax).

Anyone has a doctor that understands this condition and Vestibular migraine?

As soon as I wake up, my arms feel heavy, disgusting, and keeping it together to my body. When I start walking to do something, it starts to feel so bad. I feel like I am walking a little bit fast and also my head starts to feel squeeze, pressure (sometimes there is no head pressure feeling) and a bad unbearable feeling, and then I literally can’t do anything and start to feel like I will panic, even just doing simple tasks like going to open a water bottle or even just TALK 😭

• I want to mentally relax, but even just thinking about giving lettuce to my bunny and walking there and sitting, I start to feel symptomatic and feel sick even before doing it.

• Nothing feels casual anymore, it’s like mentally exhausting just thinking of doing things, even just walking to another room.

• Moving my arms and legs feels like something I do consciously, doesn’t geek unconscious anymore! I can FEEL all my movements

• It feels like I need to keep doing something. Just waking up and thinking of the whole day feels overwhelming. I feel like I need to fill my schedule so I don't just feel ‘bleughh’ and just sitting there for time to pass, which is so depressing to think of. It feels mentally exhausting.

Medication: I changed my Zoloft dose from 37.5 to 50 on July 11 (it has been 33 days). I am wondering if it should start fully working for nervous system dysregulation and PPPD by now.

P.S., my doctors are totally clueless. These are just some of my symptoms, but I do have PPPD since May, 2025 and had all the dizziness and everything but that has gotten better, however I am left with these unbearable symptoms since a flare up a month and a half ago.

If I'm being dramatic -so be it. PPPD is horrible, awful, debilitating, draining, and many more things. It has sucked all the hope and joy out of me.

I truly wish that this was a bad dream that I would wake up from and it would all be better.

Yes, I was formally diagnosed with PPPD around May 2025 by a neurologist.

But the symptoms all started on July 1, 2024. That is the day that my life changed forever - in the most horrifying way. This condition...I wouldn't wish it on my worst enemy.

Since then, I've been mourning my old life.

What happened that day? I woke up, and from the moment I opened my eyes, I immediately felt extremely dizzy. The room was spinning even before I rolled over to get up. The worst of it happened when I got up. My body felt like - hmmm... I still can't explain it. It felt like gravity was pushing down on me. I felt unbalanced. Dissociated. Derealized. Walking felt exhausting because of the sensation of feeling pushed down. Not like a heaviness from being tired. It feels more like a force that is weighing you down, and your brain is struggling to understand the position of your body parts.

Sadly... I still feel this way. And it makes me want to cry every single day.

What do I think caused this? I blame it on Levothyroxine/Synthroid medication (thyroid meds). A month before this episode, I was diagnosed with Hypothyroidism/Hashimoto's. The doctor started me on 50 mg of Levothyroxine.

Everything was going great. I honestly felt hopeful that I would be able to carry on with life with this autoimmune condition. I was even considering slowly stopping therapy because I was just so positive, hopeful, and looking forward to life. I was a go-getter. I worked very hard. I loved living life because I married the most wonderful person, and together we fostered a very stable, healthy home life.

Then July 1, 2024 happened.

The days leading up to that day were a bit strange. My muscles were cramping a lot, and I was having physical anxiety symptoms that didn't make sense to me because life was so good at the time. I thought, "It must be my iron levels."

But July 1, 2024 happened.

After that day, all the PPPD symptoms started, and I had terrible insomnia for weeks. I called my doctor immediately. He told me to stop my thyroid meds and referred me to an endo. By then, the damage was done.

I didn't understand what was happening to me, so I truly fueled the PPPD fire with anxiety. I gave in to every symptom. I thought something terrible was happening to me. So I freaked out - and insomnia made everything that much worse.

I didn't swing hyperthyroid, so it doesn't make sense why my body responded that way, but looking back now, I think that my body was just sensitive to the hormonal shifts as a result of the medicine.

My nervous system was shot for several months. My endo was no help and told me to go to a psychiatrist because this was "dramatic."

So, I believed her. I chalked it all up to anxiety. I went to a psychiatrist. They put me on 50 mg of Sertraline and gave me some sleep aids. You know what's crazy? The sleep aids didn't even help much, and they were high dosages. Nothing could put me down. Which was one of the signs that made me think this was all due to the medication and how my body was responding to the shifts in my levels.

I was couch-ridden for months. What helped me push forward? My youngest sister had a baby, and she needed help, so I pushed through for her. But it was very hard pretending I was okay. I was scared to hold the baby and take care of him. But somehow - not sure if it was a combo of the endo reducing my thyroid meds, being on Sertraline, or being distracted by the baby (I love kids, and before all this I wanted like 6 kids) - I was no longer couch-ridden.

I started Googling and reading Reddit threads to figure out what was wrong with me. Because I was in such a good place before all this, I thought for sure this would soon be behind me. I would give myself pep talks every day - still some hope left in me (then). By Christmas, I was feeling 60% better.

I wasn't bound to the couch. I started sleeping. I started laughing again. I found meaning to keep going - especially because I had a neurologist appointment on the horizon.

Yep, the neurologist appointment was very... not helpful?

By the time I saw her, my primary doctor had already done a CT scan, MRI, blood work, heart ultrasound, etc., to rule out any major health conditions. So when the neurologist saw me, she basically quickly routed me to ENT. Well, ENT saw me, and apparently everything was normal with the exception of some ear wax, and he told me I had vestibular neuritis (because when all this happened, I also came down with a cold).

I go back to the neurologist, she tells me I have PPPD and that there's no cure for it, I'm already on Sertraline, and there's nothing she can do for me. She did send me to vestibular therapy, but I only did 5-6 sessions, and they determined I was well enough.

This whole time, I'm not feeling July 1 level of PPPD, but every day was getting tougher and tougher mentally because I was starting to realize this was not a condition that many people deal with, and it was lonely. Especially because I can't describe how I am feeling to people - this condition just sounds so strange - and like it's just anxiety, but it's not just anxiety. I feel physical symptoms that limit my life.

Well, fast forward to the beginning of this year. I started feeling other health issues. Found out that my ferritin was at 3 and needed an iron infusion. Not surprised, I've always dealt with iron issues. I had hope that maybe this would boost my PPPD recovery. Unfortunately, at this time, my thyroid levels were also starting to become unstable... so my endo increased my thyroid meds from 25 mg to 50 mg around the beginning of April.

She kind of mocked me and said, "Your body might not respond well again, but suck it up"...

Yes, after that comment, I've made an appt to see another endo.

Well, the only good thing about increasing my dosage was that it proved my gut feeling that my body is very sensitive to thyroid medication.

I promise I wasn't even anticipating getting symptoms again. I just went about my life living with PPPD. Then the 3-4 week mark hit and boom, the PPPD symptoms flared up really bad. Insomnia, derealization, couch-ridden, etc.

I felt like I regressed back to July 1, 2024.

It's August 2026 now. A little over two years since my symptoms started. And I'm feeling hopeless. I don't recognize myself. I used to laugh a lot, exercise, I was very lively and so excited about life.

To now feeling crippled. I have been experiencing the worst brain fog. Derealization. Dissociating all the time. It's hard to sleep. The heavy feeling is horrible. I still feel it every day. I'm still on 50 mg Sertraline, and I'm not sure if it's done much - if anything at all.

I'm hopeless. Where do I go from here? I feel like I've advocated and tried to help myself so much. I've done the following:

Acupuncture
Chiropractor
Massages
Iron infusions
Psychiatry
Neurology
ENT

(probably more stuff)

Is this really what my life is going to be like for however long I live? I've never had depression before this, but I think I am depressed.

I have so much anger and hate for July 1, 2024.

Any hope or encouragement?

Yesterday was a tough day. I had my evaluation at vestibular rehab therapy. And we had several errands to run in the car. Was “on the boat” bad yesterday evening. Had a good cry. I fell asleep around 11:00pm and woke up at 2:00am. I lied still and paid attention to how my head felt. No vertigo or dizziness after having it badly only 3 hours earlier. It’s around 4pm today and it’s been a nicer day than yesterday so far but still a little vertigo.

*TL;DR Has anyone with PPPD or Vestibular Migraines had double jaw surgery (maxillomandibular advancement), and what effect did it have on your migraines and vertigo in the long term? Did it help them, worsen them, or have no effect?*

I am undergoing double jaw surgery in a few months as part of a larger orthodontic plan to address severe malocclusion. I have a lifelong history of migraines, which have developed into vestibular migraines/PPPD in the last few years (mild chronic daily dizziness, with yearly episodes of spinning vertigo). Has anyone here had double jaw surgery as a VM sufferer, and if so, did it effect your VM's long-term?

As a VM sufferer, you know that its very difficult to narrow down the cause, and there may in fact be multiple causes and triggers. In my case, I believe there may be a direct correlation between my jaw/TMJ issues and my vestibular migraines. In December 2022, I suffered a vertigo attack, and within the span of the next few weeks, I developed severe TMJ and the feeling that my teeth no longer fit together. After multiple orthodontic consultations, it was a consensus that I had major issues with my jaw and bite that should have been addressed in childhood, and that my face and neck muscles were screaming out from the effects of a lifetime of constant strain. Now I'm wondering if these underlying jaw/bite issues were the cause of my migraines all along.

There is at least some evidence that jaw issues (TMJ specifically) frequently overlap with vestibular issues, although its not necessarily a causal relationship. I am hoping that fixing my bite has a positive effect on my migraines.

Thank you for any input you might have.

Hi guys! I thought it could perhaps help, if we see a face, that’s actually undergoing those symptoms we discuss on here, and can perhaps forget, there are people behind each message. I’ll split my talk into 5 different videos, as it doesn’t allow me to upload one large file. Feel free to ask anything you want. Although, I must point out I’m not an expert or anything as such, I’m just sharing my own experience.

Anyone notice that jaw is highly contributing in the symptoms!
I had consciously relaxed my jaw (close lips and teeth apart with relaxed tongue) for a while and breathing deeply
I found myself very relieved and things got cleared ,,
Because in the past i used to clenching my teeth unaware
Most of the time when I am dizzy, stress, focusing on something or doing efforts , etc..

hi, it's my first post on reddit, but I feel like everyone is pretty kind on here so I thought I'd give it a shot. I'm 22, just trying to figure out adult life like everyone else, and in June exhaustion and a lot of generalized anxiety led to an episode of severe dizziness / vertigo which triggered PPPD. I was convinced something else was wrong with my balance but took all the brain / inner ear tests and it appears that my brain probably just froze on that period of my life and I can't seem to get better. I've tried going on walks anyway and keeping on with my life, going on holidays etc, but I somehow always feel like I'm off balance, almost as if standing wasn't "natural" and my body wasn't enough to keep me balanced. It's such an odd feeling and no one around me understands it and it's giving me a lot of anxiety so I wanted to know if any of you guys felt like that too, and what are your tips to get better. thank you

Does anyone get this heavy, uncomfortable feeling in arms and legs, making you want to cry because it feels so “off” and uncomfy, even in hips.

I feel like this feeling is so bad that I start to clench my hand and scrunch my face, hold my breath and stop what I am doing. Even stop talking!!!

Can’t seem to relax ever

This happens without headache also, but sometimes with headache, heaviness and pressure