r/pppdizziness

As the title says.

Thankfully the hairdresser does home visits so I’ve opted for that. We’ve never met before so I’m going to have to explain my situation, but I’m so scared.

I never leave the house, I rarely see people because I always feel so horrible. I have graduation photos with my family next week too hence getting my hair done, but god. How can I sit in a chair for 3 hours? I only ever have my knees up on my chair or slouch and have my head resting. I never just sit upright because I get dizzy and weak. How will she be able to even wash it out of my hair? Putting my head down over a sink? Regardless, I just CANNOT sit still!!! I have to be on the move so I don’t take notice of dizziness but this time I’m going to have to sit for multiple hours. I’m gonna die.

How do I survive this? I’m so embarrassed and exhausted from all of this.

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??

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

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?

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!

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 😉

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?

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.

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?

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.

I’m currently dealing with what I’ve been told is vestibular migraine. I get sudden, intense spells of vertigo that can last anywhere from about 5 seconds to a couple of hours. (I almost always feel like I’m falling to the right and I tilt my head to the left to try and compensate. I get flare ups where they become more frequent but I’d say I get at least one a month.
This has been happening since around 7th grade, and I’m 23 now. Along with these episodes, I’ve had a constant rocking or “on a boat” sensation for the past 7 months. I believe THAT may be PPPD.

All the mri’s and tests come back normal.
I also started Botox late June.

I’ve been going through the Steady Coach program and trying to stay active. I go on walks regularly, drink plenty of water, try to play basketball, and recently started going to the gym. Despite all of this, I’m having a really difficult time feeling like I’m actually improving. I’m starting to lose hope that I’ll get better, especially because the rocking sensation has been so persistent.

Some background that may be relevant:

As a child, I dealt with pretty severe phobias, and I have OCD that is primarily centered around fears rather than repetitive checking or compulsions. I’ve also had anxiety, although I’ve been taking Lexapro for more than 10 years and I don’t generally feel anxious anymore.

During this process, I tried reducing my Lexapro from 30 mg down to 5 mg because I wondered whether it could be contributing to my symptoms. However, I felt significantly worse after reducing it, so I’m currently back at 10 mg (wondering if I should go back up).
I’m trying very hard to stay active and continue pushing myself despite the symptoms, but mentally it’s becoming difficult because I don’t feel like I’m seeing much improvement.

Any positive feedback or thoughts or suggestions on how to get through this would be appreciated.

Anyone else just feel like they are in a hamster wheel?

I’ve visited ENT this week and although I’m happy that there is nothing with my ears, it was also very frustrating to be told that I shouldn’t even have been referred to ENT. I should have been referred to neurology!

We don’t have neuros who particularly specialise in vestibular issues where I am. Can anyone recommend a medical professional they have been to see who was interested and wanted to help please?

I’m in North Lincolnshire.

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)

have terrible PPa and ppd - it’s the only thing that allows me to not be so paralysed by anxiety stuck in bed and actually care for my infant. I have POTS and PPPD - got it in pregnancy - so very tough time health wise. My psychiatrist says 1mg per day for now is okay. it’s been 5 weeks. can you stay on it long term? I’m not functional without it and need to care for my little one.

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?

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?

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 ?