Persistent Postural-Perceptual Dizziness (PPPD)

I told myself I would come back here to announce my recovery and I am TOTALLY recovered. It took 7 and 1/2 months and I'm here. I tried everything - supplements, maneuvers, exercises. Maybe it was just time and lifestyle change that cured it. But God, was it pure hell. Prayers going out to anyone dealing with this uniquely isolating condition. You are loved and can and will recover.

I almost cried reading through some of the comments to hear and see that some people experience the same things that have been experiencing for years. It came all all the sudden and I have no idea from what. Some people say it’s vertigo but the room is not spinning nothing is spinning around me, it’s just that I feel unbalanced, unequal, lightheaded...I can’t even explain it...some days are worse than others. Even if I sit really still, it’s like I can feel myself swing back-and-forth or side to side. It’s so weird and has kept me from doing a lot of things. I had a CT scan done that was negative. I’ve had a vestibular test through my ENT Where they stir up the crystals in your ear and nothing came of that. I’m not sure what to do but I want my life back..... it is one of the worst feelings to feel as if you’re going to fall and lose control of your balance. God heal us!!!

You don’t know how good it feels to finally have an answer to what I have been feeling many months. Can’t wait to get to treating this.

I suffered 14 bloody years until PPPD video randomly appeared on my feed just yesterday, leading me to this video which is completely describing what I’ve been suffering with. I’m so glad to know that there is hope!!

Felt so alone...for years...so unable to process anything as normal in my mind . Like in a dream state almost.

I thought i'm the only one who feels like this. I have to deal with this dizziness for 24/7 for almost 13 years... It only stop when i sleep, and i spend almost all my day lying down coz it feel a little bit better while lying down you know... I've done MRi, CT scan, eyes and ears check, blood test and everything but it's all normal... i can't living like everybody else around me because of this and it's killing me slowly...

Thank you so much for posting this video. I feel very hopeful now. I was beginning to think I was going crazy. You explained it to a T.

Thank you so much for this video. Finding this video changed my life and started me on the path to recovery, Prior to this video I didn’t know what was going on with me was a real thing. Knowing I wasn’t crazy and wasn’t alone was a turning point for me. My PPPD was triggered after a panic attack, I’d never had one before and was plagued with dizziness and imbalance for months, Dr’s were no help and I had major anxiety and depression, I couldn’t go into a grocery store or walk the halls at work without massive dizziness. After finding this video I started more research and working with neuroplasticity exercises which helped a ton. Now I’ve learned that my anxiety triggers the dizziness and now I can better manage it now that I know what’s going on. Thank you!

Thank you so much for posting this! I have been struggling with dizziness, lightheaded ness, feeling the constant need to faint not fainting, etc., for a year and 1/2. And I have tried asking people about, looking it up but nothing seemed to match up with how I feel. But after doing a bit of research on PPPD and watching a ton of videos on it, I finally think I have name to put to it. So I am going to talk to my parents and my doctors about it. Again thank you for posting about this!! :>>

I love you. I've been dealing with lightheadedness/dizziness and tinnitus for the past two years. I went to many doctors and they couldn't find anything organically wrong with me and kept telling me it was just anxiety. I then spent the next two years scared out of my wits that I was dying and that the doctors were totally missing my major disease. I just learned about PPPD yesterday and... Honestly, if this is what I have, then this video is a godsend. Thank you!

Very encouraging and informative! Thank you so much! God Bless!! 😇

Thank you for naming this disorder, it definitely makes it a lot less scary knowing that something concrete is causing these things in my head. I've been having chronic dizziness for a relatively short time compared to some of the other commenters but it feels like an eternity with the toll it's taken on me. Wishing everyone in the comments the absolute best of luck on their recoveries, and lots of love for you all. <3 <3 <3

Hi everyone, I'm only just learning or heard of pppd a few days ago, I've been like this over fifteen years now and just accepted this is the way it is, just not doing many things I used to do. I now avoid people and places, stopped driving and making excuses not to go out with my friends and family (I have two little boys who knows no different, its just the way I am as I've had it for years). didn't know it was a thing (pppd) i do feel relived that it exists, feels like at times I've been going mad, feel like no one really believes me as no one can see or feel it. I could write a book about the last 15 years. I'm seeing my doctor tomorrow to ask about pppd. Hopefully sort something out. Sometimes I feel I can't keep going, but I do. Fingers crossed.

Finally ! I've found my answers here. Thank you . I quit my retail job recently as my dizziness always come and go but persist, the store lighting , people moving around, the store's shelf, any fast and spinning movement that can triggered my dizziness and cause me panic attack sometimes. I really hate that .

I received a diagnosis of PPPD last year June 2018. It’s so refreshing to have someone speak on this issue. PPPD previously referred to as PPV wasn’t recognized by the CDC until 2014. I will say that this journey has been hard. I have panic attacks regularly. The silver lining is that vestibular therapy (resetting the brain) has helped me. The dizziness isn’t completely gone but it helps. Walmart is a huge trigger for me. So what she says in this video is real. We need a larger support group for this. If you’re new to the diagnosis: it’s not ALL in your head. Be encouraged.

For the past 10 months I have been having a constant feeling of unsteadiness and off balance . Some days it's better some days it's worse . I have been to my doctor so many times and have gotten MRI and CAT scans of my brain and everything came back normal . My doctors kept telling me to drink water and take medicine like Claritin clear and wait so I just stop going to the doctor. it was so discouraging to the point I was wishing it was something to do with my brain so I could finally find the cause of this feeling. My uneasiness and off balance is heightened when I go to grocery stores . I have been having anxiety attacks and I never knew that the anxiety that I have may been causing this problem. I'm only 20 years old so I feel like no one in my family is taking me seriously. I also come from a black family so they don't really believe in these types of things like anxiety and depression. This video has been what I have been searching for !

Hi to anyone watching this video with the symptoms described, I know your pain and I want to share my experience from NZ in case it helps. Throughout all of 2019, I suffered without diagnosis. A “gloopy” kind of dizziness I called it. Not actual spinning. More like my brain was moving through space slower than my body and then always "whooshing" in a slow treacly way to catch up with the motion. Like living in cotton wool or being underwater. Mainly when moving but not always. Elements of brain-fog and double-vision but maybe not related. I had tension headaches too - probably shows I was stressed. Was trashing my ability to think and work in management role, and I took to only exercising on long flat easy spaces like a beach. I got all the tests under the sun and they came back negative. In late 2019 an ENT specialist mentioned PPPD very briefly alongside other vestibular conditions. I then read up on it myself and I was SOOO relieved it had a name and was a thing! Felt like crying with joy i wasn't going mad alone. I went back to my GP armed with my research and two things saved me. 1) An SSRI (Citalopram in my case) antidepressant. I had to ask the doc for these myself but he was happy to try after reading the material. I wasn't depressed although of course I I was fed up and stressed, but I was very happy to try anything. It worked wonders within weeks. There seems to be some thinking that it simply helps your neurons function and communicate more effectively but maybe that's not quite right. I've had no downsides other than withdrawal challenges when I tried coming off a bit too soon. Be aware of that risk. But still worth it vs PPPD hell! 2) De-stressing by learning to breathe properly again. Not just doing occasional deep breathing once a day. I learned to constantly breath diaphragmatically. There are physios and YouTube videos to help with this. It's very easy once you practice and completely transformative to your sense of calm and your body and brain loves you for it. That was enough for me to “cure” my issue with PPPD that was wrecking my happiness. 16 months on and no relapse. Hopefully it stays away. Personally, vestibular training exercises didn't help but of course that was just me and clearly they work for many. My advice is to go to your medical people with printed out material about PPPD and the possible treatments including SSRI anti-depressants. Force them to understand this is a real thing with proven solutions. Good luck to you all and I hope this helps.

This is what i was diagnosed with yesterday! At last, everything is explicable! I had a sports accident when i was 10 - was playing football, and the goalpost fell on my head!

thank you for posting this! your beautiful

So glad l googled my symptoms today and found this video. I have been suffering for years and was told it was FND and that l just needed to find a way to control my symptoms and for the last 3 years l have managed very well but these last 6 months have been just awful and l had to be referred back to my neurologist who now thinks l have PPPD and have an appointment this week to confirm if this is the case and l am terrified in case l don't get over just how bad it is and they sign me back off and l have to just get on with again by myself. It is really hard to explain something you can't see and get people to understand something they haven't been through or can see (l am not explaining myself very well here either). I just hope it goes well. Thanks for listening and letting me know l am not alone in this.