Living with PPPD | My experience and advice 

Thanks Hannah, watched your video and symptoms you mentioned I am exactly feeling same. I was so lost and was not understanding my body behaviour. I have already started doing the exercises that you suggested in your other video and in a day I started getting better. Thanks a lot for sharing.

I have been dealing with pppd for 15+ years. Went through lot’s of tests and doctors but no diagnosis. Only vestibular exercises helped. Once my dizziness got to a more acceptable level I started ballroom dancing. It has helped me tremendously. I’m still not cured and I still have to limit how much I can do a day but it’s manageable. I’m glad the medical community finally realized we have a real problem and not just in our head.

I hope you get better. I wouldn't wish this upon my worst enemy. I've had all the same or very close to the same symptoms for 8 months now. Knocking out all the same tests. The biggest help for me so far has been taking edge of a spoon to the muscles at the back of the base of my skull and stretches for my jaw muscles. Thanks for sharing your experience.

THANK YOU for creating this video. It resonates so much with me. I’m getting into my 3rd year of these symptoms and more. I’ve had a recent diagnosis of PPPD. I’ve had no physiotherapy as of yet and my only source of rehabilitation has been people like you, and their advice. You’ve explained it with more clarity than I’ve had from any medical “professional”. I really hope you’re recovering well. Take care. Merry Christmas! 👍

Mine started when I was Uber driving in a small city. The constant turning throughout the city as well as the onset of Type 2 diabetes caused my PPPD.

Thanks so much for sharing Hannah. You’ve shared some really useful information here! You’re inspirational and I hope your journey improves form here.

Thank you for this I’m 8 months in I had suspected vestibular neuritis which is now developed in to pppd it’s horrible. Sending you much love and healing ❤

Mine started after something traumatizing happened in my life 2 years ago. So I think mine is stress/anxiety related.

Thanks for sharing your experience! I'm dealing with this.. 6 months now and getting better. Your video and testimony gives me inspiration.

Thank you for this video and sharing your story! You are giving me hope as I endure on my journey to heal pppd.

Thank you for this video . I have been diagnosed with vertido about six years ago . Has three episodes of it but about 5weeks ago I started feeling dizzy and my head will feel heavy sometimes , it feels different from before . So now every time I lay down I get the feeling sensation that I’m about to spin and all I can do is try to find a neutral position to test my head . I’ve been doing many exercises with head eye neck movements but nothing seems to help . It’s very debilitating and stressing . Your video inspired me to keep going forward and will start doing your exercises . Sadly can’t do yoga because I also have a low back issue that I’m dealing with . Thank you .

Thank you - I feel less alone. 🙏🏽

Thank you Hannah, for sharing,I watched the video 2-3 times, rewinding mañy times , of course you are very young, I am à geriatric, retired.but am constantly feeling dizzy, unable to walk without support of stick even one step & I am constantly feeling like I am about to fall.Did you have difficultly walking?? I am slightly better in the morning and get very tired.Like you have seen a neurologist a neurosurgeon, had lots of scans but no diagnosis, I accidentally came across your video and am self diagnosing. Thankyou for the exercises I shall look for the video and do the exercises with you. You have given me hope, there's light at the end. Thanks.

Anyone else here that feels no clear swaying or dizziness, but still feel like this is the reason for all their issues? I always described my issues as vision going to quickly / delayed vision, brain overstimulation or moving images which makes me feel like im going to have a panic attack or make me feel like my brain cant handle it. When i described it like this no one in the medical/psychological world seemed to recognise it, and usually placed me under ADD. But this PPPD feels to much more accurate, which accounts for all symptoms, not just the concentration/tired/chaotic part im experiencing.

I appreciate you ❤ I'm on my recovery journey, vestibular rehabilitation and medication on it just to give me the break I need, I will do meditation.

Hope you're doing better now❤ I'd like to hear your updated story :)

Thank you so much!

I have had pppd since I was 8 years old and I’m 22 now. I have been to more doctors then I can count and I have had MRIs, Cat scans, EEG and so much blood work. It all comes back normal. The doctors never take me seriously every time I tell them that something is seriously wrong because according to all the tests I am perfectly healthy. But I’m not and it’s so frustrating to never be taken seriously by anyone. This constant feeling of being so dizzy I can hardly move. Not being able to walk and feeling this sense of dread when an attack happens in public because you know if you take a step you are going to fall over. Everyone looks at you like you’re crazy. All my friends don’t know what to do when they are around when I am hit with an attack. Which I don’t blame them, I don’t even know what to do to help myself. The worst part is when my tongue starts to get so heavy in my mouth that I can’t even talk. My words come out so slurred and jumbled. So here I am unable to walk or talk and being absolutely terrified. It’s the worst thing I have ever experienced and I have experienced it almost every day for 14 years. I hope now that I am starting these vestibular exercises, that I will start to get better. Thank you for sharing your story.

Thank you so much

Hi Hannah ! So, I do get a feeling of dizziness and often have nastygmus where the eyes move of their own accord to the left with the whole room turning. Now, I've dealt with that for years because it usually goes away relatively quickly and it doesn't affect me too much. Within the past month or so, I've developed a problem walking. I can't walk on smooth surfaces or even very smooth concrete without feeling like I'm going to have my feet slip out from underneath me. it's debilitating. I can usually walk on carpet or grass with little or no problems and I feel like my old self. I do have the problem with repeated lines or things moving near me increasing my dizziness. I get a lot of feeling disconnected, lightheaded, difficulty in concentrating, etc. I'm out of work and have no insurance. I spoke to Dr. Yonit Arthur on YT and she said that my symptoms sound like her patients that have PPPD. I felt like it was Mal de Disembarqment Syndrome because it feels like when I do walk that the ground was swaying underneath my feet like a rocking ship. This whole thing stinks

I also hear a brushing or whisking noise in my head or ear along with the off balance feeling. I don't hear other people talking about this symtom so I don't know if it is just me or If it is a symtom of PPPD. I certainly hope you are continuing to improve.

Hannah, great video and from the heart. Have you had any nutritional tests? - Just by chance I found through my own research that (if you're not vegetarian) that high strength undefatted beef liver tablets have, strangely helped my problem immensly. I hope this might help.

Thanks for sharing Hannah. I had no idea you were going true this. Your amazing. Powerful informative video.

Wow. It seems that we have near exactly the same symptoms and start time (Dec 2020). I had been feeling "off" for a couple of years prior, but nothing terrible. Due to a hit in football, my jaw has clicked for over a decade, but must have just been pushed over the edge that day in Dec. It started with anxiety and panic attacks for absolutely no reason. Like my parasympathetic nervous system just shut off. I had weird "electrical" feels in my neck, making me feel lightheaded, unable to do physical work. About four months of that, the vertigo/balance issues blasted in. It was terrible. 2 years, 1 anti-depressant, 1 masseuse, 2 chiros, 1 ENT, 2 Dentists, 4 Neurologists, 1 Pain doc, 8 neck injections, 2 physical therapists, 2 cardiologists, MRIs, CTs, xrays, blood work, ultrasounds, and no diagnosis later, I'm still struggling with this. Constantly feel like I'm on a rocking boat, plus dozens of unwanted symptoms. Been hell, but staying strong! Wish the best in your recovery as well, as well as anyone else struggling with this!❤❤🙏🙏

I have had this problem for twenty years and have never been told about this treatment l will be giving it try many thanks

I also have had extensive dental work done and experience some kind of vertigo episodes. i noticed at 7:36 your jaw does a twitch. Do you do this when you're anxious etc?

I've been struggling two years with the same symptoms. I hope we can get better, for this illnes takes a big toll on both body and mind. Be strong!

Thanks

Dear Hannah Could you please elaborate more on the exercises? As far as I understood, this is what helped you mostly. I ‘ve been suffering for the past 18 months.I am still hoping it will get better.

Hey I just wanted to let you know it gets so much better 🥰 I’ve dealt with this for 3 1/2 years and my symptoms are very mild nowadays and I can live a pretty normal life. EDIT: I am recovered now 🤍🤍🤍🤍

the first time I felt this strange unbalanced dizzy feeling was in february 2020 after my wife fainted in a airplane. the symptoms started the next day. and I still have them today. in the beginning i justed wanted to sit infront of the tv and not move, above all my not move my head. headache and headpreassure are also often present. and stressful situation make everthing more intense. trying to fight through it and get rid of it but its.comnot easy.

Most of my PPD is coming from gastritis. When my stomach's under control my PPD is nearly non-existent. It can also start from a infection that throws off the vestibular system pretty much the way of virus throws off a computer. So I was investibular therapy to try to retrain my brain. But viruses can get deep into the vestibular system and in the nerves. That has to be treated with diet and as far as I know it's stipular therapy. An anti-inflammatory diet and the medical medium's diet and supplements are good for that. So I was in festibular therapy for many months and I'm still doing that. I also have a problem where the crystals fall out of the ear canals so I'm getting it both ways. I'm trying to correct the gastritis while doing the vestibular exercises and trying to get rid of the high inflammatory issues in my body through diet and exercise. All of this is helping. I highly recommend going to the RU-vid the steady coach. Great RU-vid videos on how to handle this she is an audiologist.

believe I have pppd caused from vm. So I had covid this year symptoms all began. VNG test showed 33percent damage two months later got another one they say they saw nothing which I thought was weird because therapist had always told me the existing damage should always appear just looking for more I had horrible migraines for two months. Do t get them much anymore. I for sure think I have pppd. Been 7 months total maybe two months with pppd. Eyes for sure are off feels like they skip in the sun everything is much worse balance. Head pressure. Sway. And just feel off. Boating sensation is gone. Don’t wear a hat or glasses anymore. Laying down ok. I always have that fuzz in the head but noticing it’s fading. Hope these are good songs. Bobble head the worst. Will get better that I know. Takes time. Everyone is different Thanks

I play D1 soccer and had a concussion 2 months ago. I passed all my concussion protocols a month after my concussion and returned to practice, after my 3rd practice back, i felt very dizzy and pounding in my head. I got mri done and blood work and all came back normal. I just started PT but i dont get dizzy. I mainly feel lightheaded and almost as of im not in my body as well as neck pain. Dont know if this is pppd though.

Greetings from Romania! After going to countless doctors and trying various therapies, I diagnosed myself with PPPD. Almost every day (since september 2020) I have sensations of floating, of falling into the void, of falling on the back or in front, heavy head and discomfort in the neck area, ringing in the ear, pressure in the head and ears, sometimes heavy walking, as if I feel that I cannot coordinate my walking well. Do your symptoms get worse when the weather changes or in autumn or spring? Or to noises, loud, disturbing sounds? When you go by car, train or swim, are you better? I don't really get dizzy then. Good health to everyone!❤️

On certain trips, after I fly in an airplane I have these symptoms. It can last up to 6 months.

Hii.. I wanted to ask.. do you still get dizzy days? or is it almost gone now? As it is around 1.5yr since you started feeling this.. is the intensity of attack as severe as it used to be?

If I may ask, is there a way of proving the route cause of it, like you have?

Do you feel the floor is bouncing when you walk every step, like you are walking on the ocean?

I have to seen an upper cervical chiropractor ?

I notice that it flares up under stress for me. Started university, for me hard. Did alot of work, and notice the stress is too much. Be sure to find hobbies you love. Drawing; climbing, hiking. And be mindfull about the symptoms. What worked the best for me after having it on and of for years is accepting my symptoms and doing a valued action. Instead of trying to get rid of things, I started to do stuff I wanted to do but never did. Because, what have I done in the end of my live if I try to get rid of this? Spent all my time and energy on things I didn't even want to spend energy on. Hope this helped anyone. Any questions can be asked, i'll be glad to answer them. Coming from someone that had a bacteria in the lungs when he was 6 and that left him with these symtms.

were you able to get your spine or upper neck check?

I also have this it started after getting covid and hasn't gone away 😕

Have the same, of course my simptoms are a joke compared , but still very anoying. Don't have diagnosis 100 percent , but done mri and one of neck discs is out of place and also hernia in the same spot. So probably this is it, also lots of tests and looking for problem in wrong places :(

How are you now? Are you better and if so what has helped you. Thank you

I would have recovered much sooner had I learned that aviding triggers delay recovery

How do you fell while walking with pppd?

Relax into your deepest tension.

how are you feeling now?

How are you now?

I Have cocliar high drops and pppd

Hannah, I would be really careful with Medical Medium. A lot of his ideas have been debunked and he's known to be profit-driven. Read the Vanity Fair article on him and how he approached the situation with his personal assistant.

Have to strain myself to listen to the almost unbearable, excessively soft and low baby-like voice, for no avail. I would have liked to learn from her long struggle with this problem, which also affects me, but straining to listen to her almost activate my bed, so I gave it up. Question is can she present it again but with a totally different speech and voice-quality so that others could learn something from her story.?..at least do it for me please….

A 'self diagnosis' of PPPD doesn't hold any merit. You really need to get an evaluation by a health professional, otherwise you're just falling into the trap of misleading people.

thanks for video, but you are so sweet and pretty i think we need to marry :) ti amo :)

Dear Hannah Could you please elaborate more on the exercises? As far as I understood, this is what helped you mostly. I ‘ve been suffering for the past 18 months.I am still hoping it will get better.