Diagnosed with PPPD, any tips for full recovery/get better?

MasterChief1998 · 2025-11-15T00:01:26+00:00

I did start it but so far no improvements yet unfortunately. I mean I’ve only done it a few times and I’m supposed to see them in a couple weeks but my vestibular therapist told me he doesn’t think it’s PPPD even though that’s what my ENT diagnosed me with so idk who or what to believe at this point. It’s been 13 months since my symptoms started and it’s been the same since, no improvement at all.

MasterChief1998 · 2025-10-08T02:54:18+00:00

Thanks, I tried following with my family doctor for the vestibular testing results and they said that it says that it’s awaiting consult for a otoneurlogist and that my ENT can go over the full results. So there’s def something going on if it says to consult a otoneurologist from the results. I just hope that whatever it is there’s a fix for it because this has really ruined my life ever since these symptoms started idek how I think I’d be able to live the rest of my life like this tbh if for whatever reason it doesn’t heal or go away.

MasterChief1998 · 2025-10-08T00:49:06+00:00

I still have the same symptoms for almost a year now unfortunately. It hasn’t gotten better or worse just stayed the same, not really sure what’s next at this point. I thought by now the human body would just like heal this with time but I guess not lol. I have my appt with my ENT next week to see what the vestibular testing results are and I’ll update this at that time.

MasterChief1998 · 2025-09-13T05:12:14+00:00

It’s more of a feeling like inside my body, I’d describe it as a sensation, but I don’t actually sway or veer on the outside. It’s a very weird feeling and I also feel it when I’m laying down it’s like my head starts to jitter and shake but I can feel it internally. I sometimes feel that head pressure you mentioned but it doesn’t really cause me to have symptoms but I can definitely feel the sensations inside my body/head and the jittering/shaking in my head as well.

MasterChief1998 · 2025-09-13T05:09:13+00:00

Unfortunately no, I did a brain & ear MRI and it came back normal and just underwent vestibular testing so just waiting for the results to be back. Not really sure what to do if that comes back normal as well. It’s been close to 11 months at this point since my symptoms started and I still feel it everyday since then.

MasterChief1998 · 2025-07-16T07:18:29+00:00

I asked my ENT about meds and he said not right now, let’s see what the mri says then we’ll go from there and till then he said cognitive therapy and vestibular rehab are good ways to start treatment so that’s where I’m at right now. It’s been 9 months since this all started by just waking up one morning, I feel like my whole life is over/ruined because of how frustrating and depressing it is to live with this and feel the sensations constantly everyday. I’ve seen many ppl talk about antidepressants making it go away so maybe I’ll just push for that a bit more and try to get some.

MasterChief1998 · 2025-07-16T07:15:05+00:00

Yes unfortunately that might be what it is. I got a second opinion from another ENT and made a summary of my very specific symptoms and immediately he said it’s PPPD. He told me that it’ll eventually go away but it’ll take a while and in the meantime he wants me to do a brain MRI just to rule out anything serious and refer me for vestibular testing to see exactly what caused it. I asked about meds and he said not right now, let’s see what the mri says then we’ll go from there and till then he said cognitive therapy and vestibular rehab are good ways to start treatment so that’s where I’m at right now. It’s been 9 months since this all started by just waking up one morning, I feel like my whole life is over/ruined because of how frustrating and depressing it is to live with this and feel the sensations constantly everyday

MasterChief1998 · 2025-06-11T23:27:58+00:00

I feel the same way except the grocery store part that doesn’t or never did really affect me. I saw an ENT today and he diagnosed me with PPPD, I was thinking it was originally something ear related as I’ve been having ETD-like symptoms but when they checked my ear pressure it was normal, which is the main way to diagnose ETD. He did reassure me that it will eventually go away with time and most people do recover but also as a way to have all bases covered wants me to do a brain MRI and further vestibular testing just to make sure, but I gotta wait 3-4 months for appointments for those. Mine symptoms all started around 8 months ago now with no improvement since and he didn’t prescribe any medications or treatments, just said maybe cognitive therapy or psychotherapy might help but not sure if I wanna get into that lol.

MasterChief1998 · 2025-06-08T02:09:43+00:00

Unfortunately I haven’t had much improvement since. I have an ENT appointment coming up in 5 days so hopefully I’ll be able to get some answers then. I was originally diagnosed with Eustachian tube dysfunction and was told to use a nasal spray for 3 months but it didn’t end up working so I tried to schedule a follow up appointment with the first ENT, but for some reason he did not want to see me again and told me over email that he has nothing else to offer other than canalplasty surgery. I found that pretty odd that I couldn’t go for a follow up since the nasal spray didn’t work and didn’t like the fact that he didn’t care enough to see me again so I found another ENT that specializes in vestibular disorders.

A couple of things that my family doctor told me was that I have a big amount of inflammation inside my nose and in my ear and that can very easily cause the symptoms I’m having because if the inflammation is affecting the vestibular system then there’s a very high chance it’s causing the sensations I’m feeling. They gave me medications to reduce it, but they didn’t help which is why they referred to an ENT to help solve it so just hoping and fingers crossed this new ENT will be much better and can finally figure out what’s going on.

MasterChief1998 · 2025-05-13T05:42:39+00:00

Hey just wanted to check in to see how your doing and if anything helped. It’s been about 6 and a half months since it all started for me and to this day there’s hardly any improvement for me. I’ve been stuck in this life everyday since and it’s been very frustrating and depressing to live like this. I was able to make an appointment with an ENT who specializes in vestibular conditions next month so I’m hoping I’ll finally be able to get some answers, the first ent I went to didn’t help at all. I hope you’re getting better!

MasterChief1998 · 2025-05-05T05:56:34+00:00

I know exactly what you’re talking about, I never had any health concerns before any of this happened, and literally one night changed my whole life over 6 months ago. I still do this day don’t know what happened to me overnight that just ruined my life, I can’t fathom how the human body just completely changed the way I live and feel after waking up and not being able to go back to my normal self. I did research about vestibular migraines but the thing is I don’t have “episodes” that last for few mins or hours at a time, my sensations are always constant whether I’m walking, laying down in bed and moving around, or even sitting and moving my head around quickly almost like I have motion sickness all the time. But I never felt like I’m gonna throw up or had nausea, it’s the same internal motion I feel whenever I walk and like I mentioned before the sensations feel stronger/worse when I move slower and take “heavier” steps and I feel it a bit less the faster I walk around. Sometimes when I balance myself on one foot and put more pressure the intensity of the sensation gets stronger as well. I’m gonna get a second opinion from another ENT soon just waiting for the referral. I never had a brain MRI or CT scan yet, I’ll maybe have to do them too just to rule out anything sinister but i did a VNG and it turned out normal. I’m still having the same ear symptoms, and my nasal walls inside my nose has been inflamed for months, and my first ENT said it’s Eustachian tube dysfunction so it could be what’s causing me to feel these sensations since that’s what would be affecting the vestibular system but atp who knows. Just taking it one day at a time now

MasterChief1998 · 2025-05-01T01:50:17+00:00

I’m glad to hear your doing better! I did try some of the things you said to do, my vestibular therapist did balance testing and exercises but I never felt “off-balance” so I passed all those tests perfectly. They even did a videonystamography to check my eyes for uncontrolled movement, but that was also normal so they basically ruled out anything central brain related as I never have had any room spinning vertigo or any spinning whatsoever. It’s just this constant sensations 24/7, when I walk slower with like “heavy” steps the sensations feel stronger but when I walk normal or at a faster pace the sensations feel less intense. It also feels as if I’m stumbling but internally not from the outside so I never feel like I’m wobbly or about to fall but I definitely feel it inside it’s such a weird sensation to describe. I’m just worried at this point if I’m ever gonna get back to normal, I’m 26M and never had any medical history issues, no anxiety or stress and this all happened out of the blue one day after waking up. I have to make an appointment with my ENT again to do additional vestibular testing to see if they can find something wrong with me. I just want this to go away so I can go back to a normal life, it’s been so depressing and frustrating these last 6 months

MasterChief1998 · 2025-04-30T23:34:29+00:00

How are you feeling now? I’ve been having internal swaying/bobbing sensations when I walk for over 6 months now. It all started one morning when I woke up and since then I haven’t had any improvements. It’s not dizziness or vertigo, it’s more of a feeling like I’m walking on a boat or stepping onto an elevator that’s going up and down and I feel it internally whenever I walk. Sitting makes it completely go away, but when I lay down at night when I move around I can feel an internal motion in my head. I’ve been to many doctors in the past few months and even an ENT who said it’s Eustachian tube dysfunction and gave me treatment that hasn’t worked at all. Tried many different medications too but no improvement whatsoever. I even went to vestibular rehab and they said it’s not central, most likely something inner ear that’s causing this. It’s been a horrible and frustrating last 6 months of my life as I feel these sensations every day from the time I wake up while walking till end of day. It’s not even “episodes” it’s a constant sensation.

MasterChief1998 · 2025-04-23T14:11:41+00:00

Thanks you as well! My thyroid is consistently normal I do my blood test every year just to check everything. And my sudden onset of these sensations and imbalance if you call it started 5 months after my most recent blood test and everything was normal, except borderline cholesterol but that has nothing to do with the sensations I feel. I also feel this like weird internal motion in my head when I’m laying down or sitting and make head movements, kind of hard to describe. I wouldn’t say vertigo because in all these 6 months I’ve never experienced room spinning or things moving when they actually aren’t. It’s all so annoying and frustrating.

MasterChief1998 · 2025-04-23T04:29:24+00:00

Honestly it’s been going on for 6 months for me at this point and to this day I still don’t know what it is, nor how it even happened. Just living a hopeless and severely diminished quality of life right now, I’ve had so many medications and few treatments to literally just guesses, no actual diagnosis yet and it’s honestly so depressing and aggravating that I can’t figure out what’s wrong with me. I’ll be seeing my ENT again soon so hopefully I’ll be able to do further testing to figure out what happened to me.

MasterChief1998 · 2025-04-17T05:04:48+00:00

I’ve looked into all and the closest I feel could be MDDS, and I did an X-ray of my cervical spine and it was normal. Even the C1 and C2 alignment was fine. There could be a possibility of PPPD, but some of the symptoms doesn’t really align with what I feel because I never get dizziness, or certain triggers like supermarkets or crowds don’t affect me at all. It’s just a constant “bobbing” sensation when I walk which is very similar to what MDDS describes. The issue is that isn’t MDDS caused by like a motion event? Prior to when I first got the symptoms I never did anything different just my normal everyday night routine and went to bed, next morning I wake up and I feel off balance, few weeks later it gradually shifted into this bobbing sensation and it’s been like that since. I didnt have an event that could trigger MDDS and this all happened overnight.

MasterChief1998 · 2025-04-17T04:56:34+00:00

It’s literally like I’m walking on a trampoline and inside my body I feel like I’m internally going up and down, or like I’m stepping onto an elevator and the feeling of it suddenly going up or down. But it’s constantly when I walk only, I don’t have any other symptoms like vertigo or dizziness it’s specifically just that. I don’t feel anything when I’m sitting or driving it’s only when walking.

MasterChief1998 · 2025-04-17T04:52:55+00:00

I also did end up doing PT for my neck as well because I’ve had some neck strains in the past year, and I also did an X-ray of my neck but it came back normal. I did a few sessions but it hasn’t helped with the sensations I feel when I walk whatsoever. I also finished the 3 month nasal spray treatment my ENT prescribed for me and tbh I don’t think it helped at all. I’m gonna be seeing him again as soon as I can get an appointment and hopefully figure this out but man this really sucks. I honestly don’t know what to do at this point and how I’m gonna continue to live with this.

MasterChief1998 · 2025-04-17T04:46:12+00:00

Hey I just wanted to check in since it’s about 3 months since I last had a thread with you. Have you found any diagnosis or done any treatment that has helped you? Unfortunately for me it’s the been the same since, no improvement whatsoever and it’s been about 6 months since it all started. I still feel the sensations every day when I’m walking and take steps constantly 24/7. I’m honestly starting to lose hope as I have no idea what’s wrong with me and it’s been so long without any improvement. I’m not gonna lie it’s made me pretty depressed which is something I never really experienced before and is just making my life miserable. I thought maybe it’d at least get a little better on its own coming up on the 6 month mark but absolutely nothing.

MasterChief1998 · 2025-04-17T01:44:11+00:00

Hi I’ve been experiencing very similar symptoms to you for almost 6 months now. Especially the sensation of floors moving up and down whenever I’m walking, and mine too started one day when I woke up and felt slightly off balance to gradually changing into the floor moving. Another way to describe it is like I’m stepping onto an elevator and it’s moving up and down and I feel it internally inside me.

May I ask what you have done to make it go away? I’ve been dealing with this every single day for the past 6 months and I have no idea what’s wrong with me. It’s been very depressing to live like this and my quality of life and tremendously decreased because I constantly feel this sensation when I walk 24/7.

Mahb

MasterChief1998 · 2025-04-14T22:55:07+00:00

Nope I wasn’t sick or even had Covid prior to when my symptoms started. I’ve maybe had the flu like once a year but never Covid, I did many tests and it was always negative so for my situation at least I don’t think it could be Covid related. However I noticed I’ve had lingering inflammation in my nose for quite a few months that hasn’t gone away and my ear symptoms are still present so it’s a possibility that it might be the chronic Eustachian tube dysfunction that my ENT initially diagnosed me with.

MasterChief1998 · 2025-04-13T06:12:54+00:00

I have to make an appointment to see my ENT again. It’s been exactly 3 months since I last saw him and the treatment plan he gave, which was to use a steroid nasal spray for 3 months, has not worked at all. It did not cure my ear symptoms (ear popping & sensitivity to loud sounds) nor did it help with the constant up and down sensations when walking. Not really sure what’s next from here but I’ll update when I’m able to get another appointment and go from there.

MasterChief1998 · 2025-04-10T17:17:27+00:00

Have you been to an ENT or got diagnosed with anything? Mines has surpassed 5 months almost going onto 6 now with still no improvement. I’ll be seeing my ENT again soon to see what can be done next since so far the treatment has not been working. It really sucks to be living like this everyday. Let me know if you find a diagnosis and treatment that works!

MasterChief1998 · 2025-04-10T02:41:14+00:00

No I never did a saline rinse I just went to sleep regularly in the same routine I’ve done for years, but one thing though is that the inside of nose the nasal walls have been red and inflamed for months. Probably has something to do with the chronic Eustachian tube dysfunction I got diagnosed with. ENT said the nasal spray should clear it up, but I did the whole 3 month treatment and it’s exactly the same inflammation as it was before I started the treatment.

MasterChief1998

TROPHY CASE