Five Years with Vestibular Neuritis

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  • Опубликовано: 21 дек 2024

Комментарии • 107

  • @charlenes4881
    @charlenes4881 Год назад +2

    Best of luck to you with your continued recovery. My heart goes out to you because you’re a young dad taking care of the family. I’m 48 and my kids are older but I woke up with the violent dizzy spells about 2 and a half weeks ago now and I’m also going from doctor to doctor trying to figure out what’s wrong. They thought it was BPPV but it hasn’t gone away yet and my symptoms do sound like vestibular neuritis the more research I do. It’s hard when you have a job and a family and you still have to get up every day and take care of all of your responsibilities.

  • @uWu-fp2lc
    @uWu-fp2lc 2 года назад +2

    Around a month ago, I was diagnosed with some vestibular disease... to be honest, I don't remember how my doctor labelled it because she also wasn't what it is, but I think she said vestibular neuritis. The reason my doctor wasn't sure is because I have actual involuntary swaying, as in my body moves on its own compared to just the sensation of swaying (more to the right side). A few weeks back, with medication and regular exercise, it almost completely disappeared. But then suddenly, it's back and my body's swaying crazy strong again, although so far, headaches are less common. I'm really afraid of how this might worsen overtime, but I guess I kind of take comfort in you saying that something like this is livable. Of course, that's not to say I shouldn't do anything about it... I'm just saying that it's kind of nice to know that somewhere out there people can relate to whatever I have...

  • @jinkyne
    @jinkyne 5 лет назад +6

    Hi Nick, I'm sorry you have been suffering for so long. I hope that you will continue to habituate to your changed vestibular system so that you don't feel the symptoms anymore. I did read that medications can hamper/slow/stop your progress as far as compensation. Maybe now that you've stopped Zoloft you will continue to compensate and build the neural pathways that will help you feel more like your old self. I've also read that paying attention to your symptoms can prevent them from fading away. I have been using visualization techniques to help strengthen my pathways to balance. When you are imagining a situation, your brain can't tell the difference between a real occurrence and what you've imagined. So you will build memories and neural pathways just by imagine you are walking on a balance beam. I'm also doing cognitive behavioral therapy to keep down stress and anxiety levels. They will prevent compensation as well. Please keep us posted and take care!

    • @NickVullo
      @NickVullo  5 лет назад +1

      Thank you for the support. I am definitely hoping getting off the medication will help. I have heard that before meds can prolong the symptoms. We shall see what happens. Thanks again! 😊

  • @CHRONICjon716
    @CHRONICjon716 5 лет назад +13

    Welp, your story sounds just like mine. The medical community has 100 % failed us. I’ve spent so much money and time, and still have zero answers. All I know is it’s a vestibular issue. I find it strangely comforting someone else is also dealing with this. Going on 4 years myself. Keep on keeping on brother 💪🏻

    • @NickVullo
      @NickVullo  5 лет назад +2

      Yeah man. Its craziness that so many people deal with this and there is no real clear course to full recovery. It is nice knowing other people are in it together!

    • @CHRONICjon716
      @CHRONICjon716 5 лет назад

      Nick V. Cbd and prism glasses therapy have helped me tremendously

    • @NickVullo
      @NickVullo  5 лет назад

      Omg that's crazy. I got prism glasses. Never in my life did I need glasses until this happened. Then it was recommended due to the nystagmus.

    • @CHRONICjon716
      @CHRONICjon716 5 лет назад

      Nick V. Has it helped relieve any of your symptoms?

    • @NickVullo
      @NickVullo  5 лет назад

      Not really. I think at most it has decreased the headaches. I work from home and stare at a computer all day so I use them when I work. Definitely helps with eye strain. I notice a difference of I try to work without wearing them.

  • @jacobwilliam3125
    @jacobwilliam3125 4 года назад +5

    Your comment on how having a drink makes it better CLEARLY points to your dizziness coming from Central Nervous system since alchol is a cns depressent. I would HIGHLY recommend you try amitriptyline if possible!

    • @NickVullo
      @NickVullo  4 года назад

      What's that?

    • @jacobwilliam3125
      @jacobwilliam3125 4 года назад +1

      @@NickVullo amitriptyline is a central nervous system depressent, it works like alchol in laymans terms. Its proven to help with chronic pain sufferers like Fibromyalgia and rheumatoid arthritis and if I may I think you have PPPD not VN considering VN is rarely chronic and people recover quickly and usually fully recover within 2 years with VRT and VOR. It also helps people with manieres and vestibular migraine with there dizziness. Its worth a shot go talk to your gp.

    • @jacobwilliam3125
      @jacobwilliam3125 4 года назад

      @@NickVullo Have you heard of PPPD? From what you describe with how it started is very common to start with a Panic Attack/Anxiety Attack 20% of PPPD sufferers report it starting after a panic attack(I am one of them). then after that you start to form a maladaptation(basically your brain learns to fear and monitor for dizziness) and this maladaptation is like adaptation but gone wrong instead of your brain learning a good skill like riding a bike it learns how to be dizzy and it gets GOOD at it. But full remission is 100% achievable though its not easy traditional medical interventions don't work very well besides numbing the culprit at most at worst medicine has no effect. PPPD is more related to an anxiety disorder then a traditional vestibular ailment like VN. That is why one of the best interventions is therapy and SSRIs. Though from my research Neuroplasticity therapy is by far the strongest tool against PPPD. That being said just like anxiety disorders can be treated to 100% remission so can PPPD.

    • @jacobwilliam3125
      @jacobwilliam3125 4 года назад +1

      @@NickVullo Also if your symptoms wax and wane for no apparent reason like sometimes you get dizzy from turning around but sometimes your fine that clearly points out that its not a structural problem like a poor firing vestibular nerve. Dizziness from the vestibular nerve is constant and unrelenting. Also if it was VN your vestibular system would have compensated by now even if you were sitting on the couch for 5 years.

    • @ekcagz
      @ekcagz 2 года назад

      @@jacobwilliam3125 exactly, this guy doesn’t have vestibular neuritis. He reports having nystagmus but it doesn’t show up in his eyes and nystagmus is not corrected with any prism glasses since it is not a vision problem, it’s an abnormal eye movement. VN also comes with Oscillopsia, head tilt, etc. This guy has no vestibular disease.

  • @DuncanThomas-kn6ff
    @DuncanThomas-kn6ff 6 месяцев назад +1

    Hi I suffer from the same disorder it's a year now.Id like to ask if you had the continuous episodes if yes how did you get rid of them because it's a horrible feeling 😅

  • @judithocasio3367
    @judithocasio3367 3 года назад +3

    Hi, I have vestibular disorder for 8 years, at first I was told I had vertigo for 5 years but I was not spinning its like I am floating I am not able to eat because I feel like am going to faint but I have never fainted, its horrible. Sometimes it gets away for more then a week then it comes back.

  • @jaymendoza8424
    @jaymendoza8424 Год назад +1

    HOW ARE YOU DOING NOW?? IM VERY CURIOUS BECAUSE I HAVE VERY SIMILAR SYMPTOMS AS YOU DO?

  • @kan1317
    @kan1317 3 месяца назад +1

    well the main question is that,, how can you go and work full time or even part time,,, for the last 5 years it comes and goes,, in the begining they say its BPPV and now with all the tests its vn,, and for me it lasts for months and now its a year now i cant walk straight .. nobody wants me to keep at job ,,,,as my life is like a burden now who cant do anything for family,..and here in canada the health system slow and govt usually dont care in this difficult situation..for every thing u have to wait..it makes u more depresse wihen u cant work properly and no money for future or present

  • @kaeeroyal3124
    @kaeeroyal3124 Год назад +1

    Hello nick, we're you ever able to go back to work? I am also a sufferer. I've have mine for over a year now, and it has gotten better but, I will be good for a couple of days and then have it really bad days. It's been like this for a while now, so I never had the confidence to go back to work.

  • @debbieharry387
    @debbieharry387 4 месяца назад

    Thankyou for your advice.i m suffering from it now.

  • @jamestaafik9198
    @jamestaafik9198 4 года назад +2

    There is a fix if you are willing to consider a destructive surgical procedure called vestibular nerve section - which would essentially sever the nerve that is sending the distorted signals due to inflammation and possibly permanent damage to the brain. By severing that nerve the other vestibular nerve in the other inner ear would compensate, thus allowing you to return to normality.

    • @escoba1971
      @escoba1971 3 года назад

      Is that surgery expensive??

  • @pancanman
    @pancanman 5 лет назад +4

    I was on a plane when like a light switch my world started spinning. Gurney ride to the hospital for lots of checks for heart attack, stroke, tumor. Turns out I lost the nerve to my left vestibular apparatus. There is no treatment or cure, this is permanent. I finally got to where I get around and live a semi-normal life. I don't think people can tell, but my life is forever changed. I always feel like I'm drunk. I cannot handle shopping because stores make me dizzy with all the products to look at. I can't complain. I could have been something deadly. Still, it sucks.

    • @NickVullo
      @NickVullo  5 лет назад +2

      Wow that's scary. I didnt fly for the longest time when it started with me. It's true, that it could be worse but man it could be better. lol. I hope things improve for you.

    • @KevinTspirit
      @KevinTspirit 3 года назад +2

      Mine hit while boarding a flight just a few months ago, still will not fly, and iffy about going out and around the city.
      It's not as bad now, but the anxiety about getting caught out is still at the moment paralyzing.

    • @monserratelapuerta2320
      @monserratelapuerta2320 Год назад +1

      I have empathy for you and the one's other's going through this ordeal it is not a good thing this totally changed my life forever .😢

  • @benbattista4470
    @benbattista4470 2 месяца назад +1

    beers help! but if your drink too much the next morning is unbearable

  • @29884840
    @29884840 4 года назад +3

    I got this thing for 8 years now. It comes and goes. I don't like it at all. Sometimes ok for a year or months than bad again for months or years. I don't Understand what triggers it.

    • @NickVullo
      @NickVullo  4 года назад

      Sorry you are struggling with it as well. I don't know what triggers it either but it's frustrating that it won't go away.

  • @kellybennett80
    @kellybennett80 3 года назад +3

    I know exactly what you mean by pinpointing the exact date and time. 31st August 2020, 5.30am 😳 I still panic on Monday nights and I'm terrified of it happening again. A little over a year on and I'm still suffering, the most annoying bit is the oscillopsia, makes it hard to do stuff. The doctors are useless and don't know what to do with me. I do my vestibular therapy every day and have learnt to pace myself because it will bite me in the ass if I think I'm feeling okay and do too much

    • @ErikaAnderson1
      @ErikaAnderson1 3 года назад

      I hate that symptom also. Thank Hod it has a name because it was hard for me to describe to my family members.

  • @Wolfe2001
    @Wolfe2001 3 года назад +2

    I’m dealing with vestibular hypofunction, it sucks not being able to enjoy the things I took for granted like. Fairs,concerts,clubs,having drinks with friends, that’s all on hold for me. And I’m only 20 years old

    • @NickVullo
      @NickVullo  3 года назад +2

      Hang in there. Here I am, 8 years in and I'm doing all those things again.

    • @monserratelapuerta2320
      @monserratelapuerta2320 Год назад

      Please take care and get help you are way to young God bless you.

  • @jaspalrama4041
    @jaspalrama4041 4 года назад +2

    Sir I have same problem since last month, no one doctor understand my problem they say u are crazy I think doctors are not aware of it. I want to know sir can I take sugar I mean tea, which thing to avoid and also about salt sir , I want to know about the foods for vestibular patients to eat and to avoid thanks sir

  • @shawnconner9801
    @shawnconner9801 5 лет назад +2

    Hello. I'm dealing with something very similar. Same kind of dizziness, palpitations, off balance,fatigued legs. I also have been to a million doctors and 2 years later I'm still the same. I was first told it was my heart and got an icd but I honestly don't believe that's what I needed. I was told also I had a inner ear disorder but after therapy I still feel the same. I'm going to the Mayo Clinic in Jacksonville fl. They are checking everything out from head to toe, so hopefully they find out what's wrong. I will stay in touch and let you know how it goes

    • @NickVullo
      @NickVullo  5 лет назад

      Oh wow. Good luck with your visit to the Mayo Clinic. I have heard other people went there. I havent gone but considered trying before. Let me know how it goes.

    • @shawnconner9801
      @shawnconner9801 5 лет назад +1

      @@NickVullo Thanks..I will definitely keep in touch and let you know how it goes

    • @meganhenry5795
      @meganhenry5795 4 года назад

      Sounds like some sort of Ataxia. Maybe vestibular migraines. You don't have to have migraines to have this.

    • @monserratelapuerta2320
      @monserratelapuerta2320 Год назад

      Please stay in touch ty good 🤞

  • @MichelleScarberry
    @MichelleScarberry 4 года назад +3

    How often do you have "good days" without symptoms?

    • @NickVullo
      @NickVullo  4 года назад +1

      Sorry for the delay here. So I dont really have no symptom days. Its always there but sometimes it's more intense. I can go a couple months maybe where its comfortable and tolerable but then can go months of feeling crappy more often. It's tough to say.

  • @jaymendoza8424
    @jaymendoza8424 2 года назад +1

    Did you have an mri done?

  • @veronicagarcia6603
    @veronicagarcia6603 4 месяца назад

    Im suffering with this 😢I don’t know what I’m gonna do may God be with me 😢❤

  • @leelawson8375
    @leelawson8375 2 месяца назад +1

    Are you able to work?

  • @thoughtswithjim8354
    @thoughtswithjim8354 5 лет назад +2

    Man so crazy going on a little over a year and a half. Our symptoms are nearly identical, so wild how you mention the alcohol thing. I’ve noticed the same thing, I get a little drunk and I feel more balanced. Perhaps it’s relaxing the damaged nerve in the inner ear? Who knows. Anyways nice to not feel alone in this, thanks for the video!

    • @NickVullo
      @NickVullo  5 лет назад +4

      Hey! Yeah so apparently alcohol is a vestibular suppressant. lol Someone told me anyway. So I'm gonna just go be an alcoholic now!😂😂 Thanks for checking out the vid and yes you are absolutely not alone. That is why I started making these videos. Hopefully you get some relief!

    • @monserratelapuerta2320
      @monserratelapuerta2320 Год назад

      I just stared getting vestibular neuritis august 2022, i know the exact date I'll never forget. I'AM now having therapy but, the inbalance cont till today, but I pray for me and anyone going through this they will eventually be healed.The doctors tell me we can't fix everything thing just learn to live with it.😢 Iam glad Iam not the only one going through this ordeal .ps when Iam walking down the streets i have bumped into several ppl they look at me as if i were drunk and no one knows what I'm going through.😢 Good luck to you and anyone here suffering from vestibular neuritis.

  • @sixesfullofnines
    @sixesfullofnines 5 лет назад +3

    Do you remember the exact moment it happened, like a switch went off in your head.

    • @NickVullo
      @NickVullo  5 лет назад +1

      Yes. It was September 15, 2014. Probably around 9 or 10 am. I was just working at my desk and felt nauseous. I got up to get some air and boom. I thought I was having a heart attack. My heart rate was 155-160 and my arms felt light. Everything was off balance and I had to crawl to the bathroom to try to throw up. I ended up calling 911. They checked everything when they got there and by that time I felt a little better but off balance ever since that happened.

    • @sixesfullofnines
      @sixesfullofnines 5 лет назад

      @@NickVullo “I have never experienced something like this before, I can feel it is there but I cannot explain exactly, I can say it is like a frequency, 20 Hz, but I cannot say this is it. The closest I can get, is in fact, if you suddenly remember some
      thing you have forgotten.”

    • @NickVullo
      @NickVullo  5 лет назад

      I'm not 100% sure what you are trying to say but sounds like a riddle.

    • @sixesfullofnines
      @sixesfullofnines 5 лет назад

      @@NickVullo "For the first time in a human with long-term bilateral vestibular areflexia, it is shown that the VOR can be evoked by ampullar stimulation, even when there has been no vestibular function for almost 20 years." Length of time of injury is not relevant, balance is a direct process. Restoring the signal will reverse the pathology, just like when you lost it, in moments it will return. Everyone gets caught up in the virus, without realizing it is the information that gives us the sense, the sensation has no proper name in human language yet each of us know it intimately from birth. ruclips.net/video/JF0ArkVDrT8/видео.html

  • @loriacupuncture
    @loriacupuncture Год назад

    Check out the Steady Dr. Yonit Arthur. She talks about the brain and how it responds to dizziness. I had VN 5 yrs ago and have oscillopsia. 4 rounds of PT still have it but I can function just fine. Just uncomfortable. Good days and not so good.

  • @meganhenry5795
    @meganhenry5795 4 года назад +4

    You probably don't have vestibular neuritis if you've had it for 5 years. What sort of tests have you had? Alcohol helps because it depresses your vestibular system. You should check into Betahistine. If alcohol helps, there is a good chance Betahistine will help with the dizziness. Very minimal side effects. Might make you tired, but no more so than being dizzy all the time.

    • @movingforwardfco1587
      @movingforwardfco1587 5 месяцев назад

      You can have long term. Can go away and come back as well.

  • @bebeautiful2286
    @bebeautiful2286 2 года назад +1

    U are better now ??

  • @Hun0r.2002
    @Hun0r.2002 6 месяцев назад

    How are you?

  • @mandyrose5822
    @mandyrose5822 4 года назад +2

    Hi Nick. Did you have brain fog?
    I've been getting heart palpitation at 5am shakes and chills. Did your hear palpitation just go away on there own?

    • @NickVullo
      @NickVullo  4 года назад +3

      Most of the time I would need to take a valium but as long as I am on my regular medication I don't get the palpitations.

    • @sueannvannote
      @sueannvannote 10 месяцев назад

      Mandyrose - hi I read your comments about your symptoms. I too get palpitations and chills !! I was amazed when I read that you do too .

  • @ritwiksood1540
    @ritwiksood1540 5 лет назад +1

    Can Vestibular Nerve Section Surgery be an option for people suffering from VN?

    • @NickVullo
      @NickVullo  5 лет назад

      Hey. I'm not sure. Would be something a doctor would best answer. I have not had any doctors recommend any type of surgery for me.

    • @sixesfullofnines
      @sixesfullofnines 5 лет назад +1

      That would not be wise, if you look at menieres patients who get that done, they are shocked by the results.

  • @gormo6403
    @gormo6403 4 года назад +1

    do you do vestibular exercises ?

    • @NickVullo
      @NickVullo  4 года назад

      Not anymore. They never helped me.

  • @jamesrodrique4998
    @jamesrodrique4998 3 года назад

    ya same here bud 5 yrs and still going, but notice now dropping eyes...

    • @NickVullo
      @NickVullo  3 года назад

      I'm actually at like 7 years now. No real change or anything different. Hope the best for you.

  • @mandyrose5822
    @mandyrose5822 4 года назад

    Did you have ear symptoms?

  • @harjboparai1340
    @harjboparai1340 5 лет назад

    Thks for replied nick did u know about medical medium guy Anthony and his books about celery juice

    • @NickVullo
      @NickVullo  5 лет назад +1

      No. Hadn't heard of him. I have heard a lot about celery juice lately and its benefits. I may have to look into it.

  • @sridarjana4570
    @sridarjana4570 Год назад

    I had aquestic neuroma 2.8cm, Cyber knife operation did in 2021 December i lost hearing in left ear, had Double Vision now ok now my main problem is balance. How long it will take to cure my balance problem sir. Pls. Guide me sir 😭😭😭

    • @markwhitman9029
      @markwhitman9029 Год назад

      So vestibular neurectomy surgery caused you to go deaf in that ear? I wouldn't care IF balance and equilibrium would be normal again! Sorry to hear this

  • @grrsnbrbr
    @grrsnbrbr 4 года назад

    Did you take physical therapy? I was recently diagnosed with this disorder I will start therapy next week.

    • @NickVullo
      @NickVullo  4 года назад

      I did but it didn't help me. I did 6 weeks of therapy. I hear it works great for most.

  • @TheOutdoorLifeTOL
    @TheOutdoorLifeTOL 4 года назад

    what are the feeling or sensation of having this, because i am experiencing dizziness off balance when moving my head. Exact sensation

    • @teenina6829
      @teenina6829 4 года назад

      R U ok now. You might have bppv . And that's easy to treat . You just do epley manoeuvre

    • @TheOutdoorLifeTOL
      @TheOutdoorLifeTOL 4 года назад

      @@teenina6829 I still have it but lessen i just tried to enjoy do not tjibk too much anyway my results are all normal. #ThankzGOD

  • @anupriyarajak6550
    @anupriyarajak6550 3 года назад

    How are now ?

    • @NickVullo
      @NickVullo  3 года назад

      Still kickin! Not 100% but I don't think I ever will be. It's tolerable.

    • @anupriyarajak6550
      @anupriyarajak6550 3 года назад

      Think positive everything is possible just do it u can achieve whatever you want never loss hope

  • @bekayezme
    @bekayezme 5 лет назад +2

    I woke up Oct 7 of this year with spinning room. Made it to bathroom vomiting then I collapsed onto the floor. Husband is disabled so he called 911 and I went to hospital. They say I have vertigo. Im in the process of getting tested and therapy. I can't believe I have to live like this the rest of my life. The unbalanced feeling and sick stomach is horrible.

    • @NickVullo
      @NickVullo  5 лет назад

      I am so sorry you are going through it too. I wish you the best and hope you find answers!

  • @Itz_Mackenzie
    @Itz_Mackenzie 4 года назад

    How r u now?

    • @NickVullo
      @NickVullo  4 года назад

      I ain't dead!😂 Thanks for asking. Doing pretty good in spite of it all. Just trying to live my best life.😊

    • @Itz_Mackenzie
      @Itz_Mackenzie 4 года назад

      u recovered?im in 1month of VN its very scary..always anxious and i feel depressed..

    • @NickVullo
      @NickVullo  4 года назад

      @@Itz_Mackenzie I am not recovered and dont think I ever will be completely. I have ups and downs but it's more tolerable. I know where you're at. It's so hard in the beginning. Just keep breathing. Hang in there.

    • @Itz_Mackenzie
      @Itz_Mackenzie 4 года назад +1

      Do u have still symptoms of like swaying or in a boat?thanks for replying..its comforting..

  • @marioavila9021
    @marioavila9021 3 года назад

    Anyone have bilateral vestibular w

  • @jaymendoza8424
    @jaymendoza8424 Год назад

    I think I have this same symptoms like you or at least very similar but I also have vision issues along with it I can’t focus on objects clearly.
    Do you also have vision problems??

  • @ekcagz
    @ekcagz 2 года назад

    You don’t sound like having vestibular neuritis. People with VN couldn’t move their head that much and quick like you do in your video. People with VN has visible nystagmus, oscillopsia, head tilt, vertigo, etc. Your symptoms might be central (not vestibular) or caused by anxiety.

  • @peek5580
    @peek5580 3 года назад

    Have you got your adrenaline under control yet?

  • @monserratelapuerta2320
    @monserratelapuerta2320 Год назад

    I know how you feel not easy.

  • @michelebergman4336
    @michelebergman4336 5 лет назад +1

    ITS THE XANAX!!!!!!!! Go on you tube and see ALLLL THE BENZO SUFFERING FROM XANAX

    • @NickVullo
      @NickVullo  5 лет назад

      Hey there. So I'll only took xanax very briefly when it first started in 2014. only for a few months. I was switched to Valium which I know is the same thing basically but I didnt take that daily. This started before the medication not after.

    • @michelebergman4336
      @michelebergman4336 5 лет назад +1

      Nick V. You only Ha e to take ANY BENZO for a week & you’ll be stuck Suffering for a YEAR trying to taper off of it !!! This is just BASIC BRAIN POISIN & BRAIN DAMAGE !!

  • @harjboparai1340
    @harjboparai1340 5 лет назад

    Hey nick u have ringing in ur ears

    • @NickVullo
      @NickVullo  5 лет назад +1

      Not ringing really but tones I guess.

    • @omarbilbao7460
      @omarbilbao7460 Год назад

      Hello harjboparai. Has your tinnitus disappeared?