Labyrinthitis and Vestibular Neuritis Recovery
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- čas přidán 25. 08. 2024
- 3 months into labyrinthitis and nearly 100% recovered! Hang in there. Hope for people who are suffering.
Consult with an ENT
start Vestibular Rehabilitation or even search the exercises on youtube
Don't avoid your triggers! If you have trouble in shops/groups, then do many small exposures. Do the things that make you dizzy. If bending over makes you dizzy, then start picking things up off the floor. You have to get your brain used to different movements. It will feel awful at first, but it will get better.
I'm not a Dr., but find, like you eventually will, that we the patients often become very educated on labs/vn.
Chances are, you will make a full recovery
Find more support at FB group labyrinthitis support group and vestibular hope. Thank you and hang in there. As my husband reassured me "this is NOT your story, you will get better, I just know it".
UPDATE. Now nearly 4 months, and absolutely NO regression. I'm continuing to find little movements that make me feel "off", work on them with VRT, and am finding them not bothering me anymore. Ongoing recovery for me. I just spent the weekend on vacation with my family. Recovery IS possible. Hugs to all of you suffering.
Hey Sharon, thanks for your videos. Really appreciate it. Just wanted to check in and ask if you had suffered with oscillopsia (blurring/jittery/bouncing vision) when you walked and moved during the peak of your illness? Did you suffer from ETD and if so, has that recovered? How are you keeping now? Would you say you are 100%? Have you had any relapses over the two years? Sorry for all the questions and thank you very much in advance! :) x
@Sharin Hen how long die you make VRT a day ?
have you had tinnitus? if so, are you cured?
So I’ve had my symptoms for over a year now and was able to diminish them with this breathing exercise I saw you describe on CZcams!! I inhale for 4 seconds, hold my breath for 4 seconds, and exhale for 4 seconds!! It was the third time last week week I was able to do it successfully!! 👍
I did it during lunch yesterday and I was totally fine an hour later! My legs were a little wobbly but got better fairly soon! So I’m learning to control it!!
I’ve always heard about how helpful breathing is!!
Thankyou! Thankyou!!
Thank you so much for this. That smile and positivity was exactly what I needed in this dizzy time of uncertainty. I hope you're doing well, and keep shining that beautiful light of yours :)
I've been 100% for a long time. I just started back on the call rotation at the hospital, so it's been really busy and I am still 100%. I fully have my life back. I just wanted everyone to know that this is the norm. The norm is to fully recover. So many videos get posted from those who remain sick, and I think that although these videos are valid and useful and there is 100% a place for them on youtube, they made me very VERY anxious, watching sick person after sick person when I first was sick. The vast majority recover.
This video has really helped me see the positive side. :) thank you
Thank you for this encouraging video, my wife got struck by this disease last week, and the first day was horrible, she couldn't help herself from vomiting by any movement. She's a little bit better now but still far from 100% recovered, and she feels like got stuck in to a very uncomfortable status and can no longer be normal again. You video real gave us hope!
How she doing now?
Took me a couple years to recover from this. Horrible disease.
You're very lucky to be well after 3 months! So many people struggle for more than a year with this. I've had this for 2 years now. I've been doing VRT for the last 1.5 years, every day. I am now around 85% recovered I would say. Much, much better than when this all started, and much better than a year ago. I'm out hiking again and doing normal things again. I'm also practicing hiking on extremely steep mountains and hillsides and I haven't fallen, other than simply dirt giving away under my feet once and slipping down a hillside a few feet. But even then, I was able to maintain control and an upright posture without falling. I think hiking in rugged and challenging terrain is a great way to speed up recovery, in addition to the VRT. It can be dangerous though, but I love the outdoors and couldn't imagine doing anything else! I'm also much happier now and can cope with the muted dizziness and off-balance feelings. The brain fog was a huge issue up until the last few months. Sometimes that was more crippling than the dizziness. But as the dizziness and balance issues fade, so does the brain fog.
Seth! You should be VERY proud of yourself for doing so well. I know you are only 85%, but you are hiking mountains!!! You're 85% is likely a lot better than other's 100%. I absolutely agree, activity in addition to VRT, can speed recovery. Brain fog is the worst! I'm sure those who suffer longer may have more damage on onset. Keep me posted about your continued recovery Seth. I will be sending you steady vibes.
did you pas brain fog? i m civil engineering student , and i have lost a lot of precious time.Is it normal to have brain fog symptoms at 20 years old? and what i can do for this?
I 100% suffered awful brain fog. It was often the worst and most persisting symptom. It's very discouraging. I can only assure you that SO many have this as one of their last symptoms, but for the vast majority, it slowly goes away. Good luck with your studies. I cannot imagine having this when I was in university. Keep pushing through and make sure to talk with your professors. Educate them. My mother is a professor and they are absolutely more approachable and understanding than you think.
thanks you so much for giving me an unexpecting hope. Something more, did you pass brain fog the whole time of labyrinthitis? cause, from the begining, i couldnt be able to calculate and i was struggling doing studies. also, did you get over of that at 3rd moth?
i forgot to say , today i had a better quality of sleeping, maybe cause the anatomic pillow that i bought yesterday or b12 vitamins injections or gkigo biloba , i dont know but i had it. did you have sleeping problems , waking up with pressure heavy head ?
i'm tearing up just watching this. You have no idea how much your video has helped me. I've been struggling with this since May and am just now finally starting my rehabilitation. I'm 19 and i have been very afraid of the future, but your video has really given me some hope. This entire summer i've been feeling really negative about this whole thing, but you really gave me some hope that my life can go back to normal
I think VRT is so important. You are on your path to recovery Angelo. Wishing you luck with your rehab. Keep up with it. It is VERY challenging in the beginning and I found, as have many others, that it will often make you feel worse before it makes you feel better. Keep pushing through. You'll get there. I am three months exactly today. There are support groups on FB that are excellent. People talking about various symptoms and what has helped them. Labyrinthitis support group and vestibular hope are two really great ones.
Hey Angelo, are you better now?
Thank you so much for sharing ! I think I m through this right now and its really tough, even if the first week was the worst ! I understand what you have endured, especially that Im a mom too ! These days, I listening many recovery stories and it helps me a lot to deal with this condition and to gives me hope ! Thank you again !
Veronique! I'm so happy that you are finding hope. It is SO important. We've had a pile of recovery stories on our FB page "vestibular hope" today in particular. When I first fell sick, I searched and searched for someone who was feeling the indescribable feelings I had who had survived and sadly, there wasn't very much online. I swore that I would get better and start a movement of recovery. Now, I see people recovering and sharing all the time. It is so rewarding. It's amazing what the power of positivity has in the battle of vestibular illness. I'm so happy it gives you hope. I'm 2.5 years in and living a very exciting and active life. It isn't just "normal", it is extraordinary.
My son has been diagnosed with vestibular Neuritis. I have never seen him so poorly. Early stages, but now seeing ENT specialist. It’s horrible! But glad you recovering from your episode 👍
I hope that 5 months later, your son is doing a lot better. That said, I was still symptomatic daily at 5 months and did end up fully recovering. Support, encourage and validate any feelings your som has. Thank you for loving him through this.
Great Vid Sharon ! .... just had this over the last week, but the room has stopped spinning. Thank god !. Was lying in bed in hospital for 5 days but im up and walking. Thanks for the Video !!! ..
Hope you feel better sammiibb. Recovery is up and down then up and again, so it can be a bit of a journey, but the vast majority of us recover. When you feel better, try to return back to life as normal even if it doesn't feel normal. It really helped me recover.
it went away quick? the er doctors basically kickd me out and didnt know what to tell me =(
Thank you for giving me hope. I've only had it for 3 weeks and it's really curtailed my life.
I still felt quite awful at 3 weeks. For me, the three week point was really hard, because if you google labyrinthitis recovery, it says "typical recovery is 2-3 weeks with some experiencing mild symptoms for 2-3 months"... so at 3 weeks I expected to be better. Hang in there Trevor. Get good sleep at night, do VRT exercises, move as much as you are able to and try to push yourself to do a little more each day, even if it is just walking a little further. Also, those FB support groups are GREAT! Lots of advice, VRT exercises, support, etc. You WILL get better.
Thank you for this video. Needed the motivation. Just started my therapy and it’s really hard the exercises make me dizzy but I’m determined to fight this thing and make a full recovery soon!
Hi Melissa that's how i am right now did you find anything that helped you recover? I am going on month 5 and I still can't work?
how are u now
are u visit vestibural rehabilitation clinic they will show you the correct exercise for your condition i takes time but its gonna work for sure i have VN more than 7 months and star exercise which the therapist shows me before 2 eeeksi they say i will start feeling normal after 2 3 month but i have to continue doing them 6 month more
its hard time but i am optimistic everything its gonna be alright
@@sheenapoucette5888have you had tinnitus? if so, has it disappeared?
Hey Sharon! Glad to hear you have recovered. I am on month 8 and having more moments where I feel 95-100%. It definitely has been a journey!
Ah, yes, the first glimpses of normal. It feels SO good doesn't it? You'll be getting more and more of those moments, until all of a sudden you are counting the moments that aren't 95-100%, then suddenly, you'll be compensated. Happy to hear you are getting there.
Hiii David how are u now just want to know and how much u recovered does ur recovery process was linear or bumpy?? And did u ever felt space motion discomfort and brain fog
Be beautiful Yes I have recovered back to 100%. I have had times where I went backwards a little bit but typically recovered fairly quick. I am currently in a relapse because I had Covid which threw me off. In the recovery process it was definitely up and down. Have a good few days and then off again. In time the brain will figure it out. Keep moving.
@@davidspychalla5305 relapse is intense or low
Be beautiful Its not as bad as it was at the beginning. However, this last relapse with Covid has been a little more intense. I do have moments and days where I feel pretty good though.
Thank you so much for your videos! I have been struggling with this for about six months, finally starting to get a little better.
Happy you are beginning to feel better. I'm sure it will continue.
How are you now...please repy
Just found this video. I had ringing in ear for almost 3 years. But for the past 3 weeks, I constantly feel like I'm sitting on the boat. Went to the clinic and the doctor said I'm having a problem in my ear (he did not said it is vertigo/labyrinthintis) and just gave me some medicine. But it did not cure my problem. So I decided to search about my symptom and found this video. Thank you for sharing your experience. At least I know my sickness can be cure.
have you had tinnitus? if so, has it disappeared?
@@omarbilbao7460 yes. I have tinnitus and still have it. I got diagnose with vertigo too.
I watch your video everyday to give me courage. I’m 9 months in to my journey. It’s been rough.
I hope that your journey will soon get easier. Sorry you are going through this. Recovery is worth all the hard physical and mental work you have to put in.
You’re so happy, thank you for passing your experiences, it’s really helpful.
Thanks for sharing. I'm 4 days into this thing now, seem to be over the initial acute sickness,but really wobbly and also concerned about what next and for how long. Good to hear about positive outcomes.
Hey Tom - I'm 2 months in after my first vertigo attack. At around 80% I would guess. Still dizzy with some head movements, still have tinnitus and pulse feeling in my ear. Hang in there bud, its a rough road to recovery but take it day by day.
@@BryceRehder How are you now?
How are you now?
How are you now ?
I forgot to mention, most people with VN don't have hearing loss.
Thankyou for the information.
But do you feel fullness or heaviness in ears ?
@@SoosooCom I still feel heaviness in my deaf ear. It has eased substantially over time... but it took literally 7 months for my ears to pop after onset. 7 months of trying everything including the ear popper from amazon $$. Much better now, but still odd sensations with low pressure system. I have eustachian tube scarring. Not much they can do there.
Sharon....after looking at several videos on Eustachian Tube Dysfunction and a woman who had the surgery...my gosh it sounds exactly like she had the same or similar symptoms as myself!!!!!!!!....I think that I might be on to something thanks to your advice as well as all of the information and videos available on her.......im going to continue with the rehab program and get a referral to a good ENT doctor.....
I am just so SO happy that I might have been able to point you in the right direction. If I have gained anything from this, it's how awesome helping those behind me. Best of luck with the ENT. Keep me posted. Remember they might have to examine your eustachian tubes out of office (in a hospital setting, with a scope), so you might want to mention that ETD is what you suspect when you book your appointment.
I'm 2.5 months in. I would estimate I'm like 50% better. I really hope Im fully better in the next few months. Praying to God fervently everyday that I will heal. I stay as active as much as possible and constantly do my VRT. I'm even doing red light therapy everyday on my ear as well as 30 sessions of hyperbaric oxygen therapy (for my sudden hearing loss)
have you had tinnitus? if so, has it disappeared?
I have tinnitus and right ear loss for 4mos now, any recommended treatment?
Any luck with HBOT? I know a girl in Boston who purchased her own… for POTS and post concussion. But it was one of those things I didn’t do that I feel may have helped. Might still try it. Might snuggle into her pod. Lol.
500 mgs of Magnesium daily. Has been the ONLY thing that's worked for me. I'm not 100% and never will be but I have a little bit of my life back and I'll take it. Give the Magnesium 2 weeks to start doing its magic. I even sleep better.
How much did magnesium help?
Like % wise?
How you feeling now?
Nearly six weeks in. I am able to sit up and walk around the house for a min or so. But most the time I’m in bed feeling so exhausted from it. I get very dizzy and feel faint if I do more than a few mins walking around my house but trying to build it up each day. Haven’t been able to leave the house which is really hard. I’m better than I was but it’s very slow progress and the anxiety that comes with this is horrid. I’m wishing everyone a speedy recovery. Thank you for this video brings me hope and the comments section too! ❤❤❤❤❤
Recovery can be painfully slow… not always, but that’s how my journey felt. I hope, as this message is finding you 6 months into the journey, that you are doing more. If not, don’t stress… it’s never too late to recover. Just keep making those very brave baby steps in the right direction. The more you can alter your behaviour to someone who is recovered, the faster it will progress.
@@SharonHen thank you so much Sharon! I’m doing okay in the house still dizzy alot but doing more. Outside I’m finding very hard I can do ten mins and have to come in as I get very dizzy and feel faint. It’s been 8 months since I got poorly and I’m seeing small wins. How are you hope you are still recovered and well ❤️❤️❤️❤️❤️❤️ thanks for providing comfort to me during this time xx
Thanks for the encouragement. I just got diagnosed with it. It's been 2 weeks now and feeling better. Ringing in my ear and some pressure. Side of my head feels numb at times. Trying not to feel depressed but struggle concentrating.
you are in the worst of it right now. It is so promising that you are already seeing improvements. It will get better.
Hey, how is your ringing in your ear? Mine is still ringing after 6 months.
5 months and I have better days. Then not so good. Balance isn't great at times and sense of distance is different. Headaches sometimes also
@@perfectgamer007Has your ringing in your ear disappeared?
@@sanlot17kenHas your ringing in your ear disappeared?
Week two for me needed to see this.
It gets better. Stay strong.
Thank you for your video. Am going through an episode now. 3 weeks in. Hope the lady in the video is much better 👍
It's been 6 years now and I'm living a normal life.
Hiii Sharon just wanted to know wen u started to see improvement and wen felt that u are symptom free I’m at my 5 month so scared and depressed and even my symptoms changes
@@bebeautiful2286 I understand. It's hard to see improvement when you are "in" the throws of being sick daily with symptoms that come and go. I was 6 weeks and 3 days into the illness before I first felt a moment of normal. Before that it was 24/7. I was about 6-7 months into doing VRT before I felt like myself again. I was doing VRT daily, walking daily, forced myself to go back to work (very uncomfortable) in that time. If you are able to get back to living a full life, you'll recover faster. There are growing pains with each new skill or environment you expose your brain to, but these symptoms or growing pains are necessary to get you back to feeling better. I had a blip at 7 or 8 months and recovered in a few weeks, but I've been good for 5 years.
@@bebeautiful2286hi , how are you feel now , i beging this travel , i'm on tow months ago , and ig ot the same sintoms , excuse mi inglhis , but my my language there not information abaout this condicion , i thanks fpr your reply .
Really nice video- they showed it in one of physio lectures at uni
Thankyou Sharon for giving me some hope x
Hi Sharon. I am going through a 10 month battle with this. I honestly am proud of myself for making it this far. I can’t remember what it is like to not feel absolutely awful due to this illness. It’s ruined many things for me, but you’d like to think everything happens for a reason. What got you over this ultimately? I’m making my video when I get over this!
The thing that got me through this is probably the same thing that made me susceptible to being vulnerable to the illness. Irony abounds. I’m very determined. Once I decide I want something, I go after it. I’m focussed, determined, and have the drive to do hard things. I feel like you do too. It is so freaking hard. I look forward to seeing your recovery video. I get feelings about people… and I feel you will recover.
Prayed for you Troy total restoration
@@goodevins9408 thank you my friend. Prayers to you as well!
@@troyjbanks yeah Saturday morning in the arm chair not in the golf course but this too shall pass!!! 0:47
thank you sharing you give me hope!!!!
Thank you for sharing you have given me hope i have been suffering since August last year on and off more on than off i struggle more outside so try to avoid walking alot but i guess i have to to help with my recovery x
Love you so much!!! ;)
That’s great , I have tinnitus in my left ear , and as of late have been experiencing some vertigo . I have not had any hearing loss , and do remember doing some of these exercises in the past . Thanks for the recommending of a VRT .
have you had tinnitus? if so, has it disappeared?
So glad to see this video - I thought I was going insane. At some point I didn't know anymore if the symptoms are still from the ear or from my anxiety. I was unable to leave my house on my own due to all the anxiety, I felt so helpless
Same here bro it's the worst
I’ve had this for 3 months aswell and this has made me feel a lot better. Like you I woke up in the morning with tinnitus followed by dizziness and nausea for 4 weeks. The tinnitus is quieter now, not sure if that’s due to me getting used to it or if it is actually disappearing but either way I’ll take it! My jaw is also stiff as hell sometimes so annoying especially when eating! 😂
Has your tinnitus disappeared?
@@omarbilbao7460 no but I’m now used to it to the point I cannot hear it most of the time. A lot of the time actually. It really does fade into the background just give it time
@@legendgamer676 Have you had vestibular neuritis or labyrinthitis?
@@omarbilbao7460 I was diagnosed with labrybthitis two years ago, mine lasted about 5-6 weeks
Hi sharon! Thanks for this video. I also have VN and I'm in 4 weeks of this sickness! Glad you're feeling better. I just want to ask if the sudden head movements bothers you until now?
Tyron. Happy that you are finally coming out of the acute phase. Sudden head movements bothered me until about 4-6 weeks. They got so much better with vestibular rehabilitation. I think it's the quickest way to recover. There are a few excellent ones online. I think one of the best ways to overcome it is through gentle repetition. For me, looking up was a trigger, so I found one where you focus on something on the wall (in my case, a post it with an "A" written on it) and moved my head slowly up and down while trying to keep the A in focus. I did this every single day... now looking up hardly causes any symptoms. Feels VERY strange in the beginning, but keep it up, and you'll be noticing things getting easier.
How r u now?
Thank you ❤️🙏🏽❤️
Mine started with a panic attack! Got this from influenza A, been dealing with it for a lil over six weeks. Had another panic attack last week, (I got sick again so the dizziness flared up bad) Physical therapy helps, but just always anxious and feel like i’m moving on a boat sucks
I’m so sorry Parker that this has happened because it can impact all parts of your life. The good news is that there is a lot of hope that the future is very bright for people who figure out ways to overcome their specific circumstances. You are 6 weeks in… and I am fully aware that these past 6 weeks can feel like an eternity, but if you widen the lens of your life, know that so much good existed before this and so much good exists after recovery. For most, recovery happens without much intervention… but for many of us, especially people who seek help online after a period of time, it tends to be a combination of learning to calmly move and trust yourself again… through VRT, habituation, getting comfortable with being uncomfortable, returning to the life you want to live regardless of how ready you feel to do that. There are so many good resources online. So many people, smarter than me, who are here to guide you. That said, I’m an excellent cheerleader and can absolutely push you if you join Vestibular Hope on FB. Myself and others have beaten this and are living normal… no… exceptional lives. You’ll figure this out.
I've had mine just over a year. i felt soo dizzy like i was on a boat..my ear felt full. i actually passed out a couple of times. to cut a long story short i get out a bit more now and push myself. my ear still has some fullness but it's the anxiety that remains....my throat feels tight and i feel faint but i get through it.
Happy you are pushing through. The anxiety is what many people consider the last symptom. It is the constant worry that it will return that tends to make us feel so fearful. Keep going. Thanks for sharing.
cats12329 yeah...it feels kinda strange like you have something stuck in there. Mine is constantly getting sore and my ear has a dull ache sometimes. I never suffered anxiety before all this and walked everywhere....now i hate walking anywhere 'just in case'. it's a vicious circle which i hope goes away. my forehead sometimes feels kinda cold inside...maybe it's stress related too.
@anteater74 how long have you had that rockig on a boat dizziness ?
@@8QQ8 Hi. Mine lasted ages...and I still get it on and off. I get very anxious still going out by myself sometimes. Hope you don't have it bad.
anteater74 , when you had it did you feel the rocking even when you were lying in bed? I have this sh*t for 9 months now. Constantly. 24/7. My diagnosis is Vestibular Migraine... but who knows.. i have this awful rocking, floating dizziness and light headedness and extreme head pressure too.
Lately i started to feel like the floor is moving under my feet , and i SEE things like they’re slightly moving too. (Like shelves on the wall or anything really) Its crazy. How did you get rid of yours??
I have the same symptoms following a sinus infection. It has lasted 2 months now. In the begining it was difficult to manage the balance problems and anxiety like i m gonna fall or pass out. I m on meclizine now. I fold little piece of toilet paper and put in my ears to block sounds and i wear dark sunglasses every where i go just so i can get through my day. I try not to think about it but it comes and goes. I sit or lay down with eyes closed for 10mins during an attack. Will this ever go away?
I recovered from vestibular neuritis . I am a dentist and it was huge challenge working for a few months
How long did it take for you? Congratulations!!
Hi how are you now? How long did it take you to recover
@@sherinecraig9663 it took3 month. You have to push yourself to do activity .treadmill, racquetball .lots of walking. All of this will be painful for awhile. If you donot do activity your ear ears neuronal pathway will not compensate. How long have you had it
Had this for over 3 years now
And I’m 80% recovering but that’s the best I’ll get
My nerve is chronic damaged
So this is it test of my life
Can handle it but it’s hard to live with
80% felt pretty ok for me. I know the last 15-25% was harder to obtain than the first 15-25%. The nerves don’t fully heal for many, myself included, but the brain compensates and you can get to a place where you no longer feel symptomatic. Great job getting where you are and I still have hope you will continue to slowly improve. Sorry this all happened to you.
Video really helped me until I read the comments haha. I had labrynthitis for the past 3 weeks and the vertigo was unreal. Now the dizzyness has stopped but I still have no balance. I can't walk for too long otherwise I start to feel dizzy and I can't tilt my head to the right without that same dizzy light headed sensation. Im 24 years old and I'm very worried for my future I see endless stories of people suffering with that same thing I have but I see literally nobody saying they have returned to normal. Please is there any home excerices you could recommend for me as this is Covid times and my doctors are closed aswel as the hospital. Thankyou for making this video it'd a small light in what seems to be an endless tunnel❤️
I started having dizzy spells 6 weeks ago. I have just started these exercise I found - czcams.com/video/olgEtOKAGaI/video.html
Please go slow. I do 20 repetitions eyes closed and then 20 repetitions eyes opened. Perhaps increase that repetition as you made progress. Listen to your body and stop if it's unbearable. Good luck.
Nirvana Rupawan when you did those exercises did you feel your ears were heavy or full during the exercises ?
How r u now?
@@Itz_Mackenzie alot better but still lose my balance when I tilt my head to the right...but compared to how I was when I first wrote the comment I am millions times better. I am still yet to undergo VRT (vestibular rehabilitation therapy) but I'm sure that will help.
@@danl5225 thanks for replying..i need this coz im already depressed..crying and crying..hoping will get better soon and be normal again..
After 4 weeks of problems one dr finally diagnosed me with this. I’ve been prescribed Betahistine tablets or a month and dr says that they should do the trick.if no better then a ent specialist but if she sent me there and then they would just say same take tablets for a month see how I do. it all started with a sense of falling and dizziness taking my daughter to school which freaked me out a bit then two days later the same which brought on a major panic attack. I spent the following two week on anti dizziness tablets which didn’t really help and made me proper drugged up. Second week they put me on ani anxiety tablets, with all sorts of side effects 😩 then I ended up in a dizzy panic and husband took me to A&E then said it was bppv - very quick to say that was it, do eplely manoeuvre- see y’a👋🏻 I had one day where I was ok, then it really started! Like walking on sorry ground, major spaced out, couldn’t do hairdressing or art as my job😭 couldn’t drive and generally felt spaced out like the hangover am I still drunk feeling? I found talking to friends and social media post helped and still is knowing everyone send me love and strength. Meditation is helping and hope the tablets do too. I looked at dietary needs and triggers on Google but there is hope. So glad your on the mend and it’s nice knowing your not alone. We all have a inner strength and I’m stronger than I ever realised. Everything is temporary and I will as sure everyone will get through this and we will get back to our awesome selfs soon. Sending much healing love xx
I have VN too..and having anxiety attack at night..i wish it would go all away
how are you now?
Hi! I am suffering with vestibular neuritis since January this year. I went to therapy and went 100% back to normal in June 1. BUT on November 15, I am back again to 50%. I can't work, can't drive, can't go grocery shopping but most important care for my kids...
It is so hard being a mom and having a vestibular disorder. I feel for you. My ENT mentioned that only 5% have recurrence... that you can become decompensated and have setbacks, but a full blown second attack of labs would be rare. I hope it's just a setback and that you can re-compensate faster this time around. I hear this is often the case. Keep up with the vestibular rehab exercises, try to do things that make you dizzy in small doses, and try not to lose hope. Remember how good it felt to get to 100% after being sick? you'll get there again. Sending healing thoughts to you.
I suffered from labyrinthitis around 2 years ago, was given a months worth of stemetil tablets and from what I can remember within a week or so I was fully recovered. Now I have it again, since 2 weeks ago. Been to see the doc and I have a months worth of stemetil tablets again which I started taking on Monday evening. So far they're not really helping and I'm back to feeling like I'm going to be like this forever :(
You will get better... keep going.
Vestibular neuritis hit me exactly three weeks ago from today. 3 days ago, I was convinced that I made a full recovery, only to develop comparatively milder vertigo earlier this afternoon. Did you experience these fluctuations during your recovery? Did you have days in which you felt almost fully recovered, only to feel dizzy the day after?
Recovery for most is not linear. Seems to go... bad day after bad day, the odd good day, mostly good days, the odd bad day then eventually full recovery. Make sure to have a physiotherapist or a Dr. check you for BPPV which is a positional vertigo that 40% of us with labs/VN develop over the course of our recovery. It is something that is easily fixed with the Epley maneuver. I had a BIG setback right at three weeks, then mostly recovered back to where I was by 4 weeks, then continuous recovery from 4-6.5 weeks, then really REALLY great feeling since then (I did have BPPV at around 7 months after the trampoline park and sleeping on my deaf/bad ear and jumping out of bed, but it was just 10 seconds then anxiety then felt fine). Hope this helps. Feel free to join the FB group vestibular hope. I'm just able to share my story, but there are hundreds more on there every day supporting and guiding. You'll get through it. It's a really good sign that you had a bit where you felt recovered, you'll get there again.
Sharon Hen Thank you for replying!
No problem at all. Once I knew other people had the same experience of ups and downs, it helped me relax and have hope again.
I'm happy to say that I've made a full recovery!
I had the same symptoms 5 years ago one day you wake up with vppb I did the Epley maneuver and fixed that after that I kept feeling like I was in a water bed and tinnitus then it went away after like 3 months. But now this year like 2 months ago I woke up all dizzy and did the same Epley maneuver and there it was the vertigo again fixed it after 3 to 4 days of Epley but to this day I still felling dizzy like im in a boat ear ringing and a pressure feeling on my sinuses doctor believes it’s chronic rinitis. Also does anyone of you guys gets that eyes pain pressure ??
im dealing with this for 10 months and i just wish i can go back time.
I know what you mean, I had it and I had a complete mental health crisis
@@oliverpigram7054 do you still have it?
@@kramer911 it's mostly gone but I have lost a bit of hearing permanently
its been 1 year, still suffering.
@@Tobi-hr8ns How are you now?
I have been feeling dizzy all the time for 3 weeks now,started in a supermarket whilst shopping & I thought I would pass out.Doctor said is Vertigo & prescribed Stemetil which does not seem to work.I believe it to be Vestibular Neuronitis after online research because all my symptoms fit(ie sudden onset,long lasting dizziness,strange headaches)Just want to feel well again.
Check with your Dr, but Stemetil is one that I believe might be a vestibular suppressant. They can prolong recovery if you take them past the acute phase. Check with the pharmacist, but I believe if you take a drug like that, it masks your symptoms and doesn't expose your brain to the full damage of your vestibular system, not allowing it to compensate for that damage. If they don't seem to be working anyway, might be worth asking if you can come off of them. Always follow the Dr's advice, and if you have trouble, you can always seek a second opinion. Hang in there. I was still having a hard time at 3 weeks... as google told me I would be better already. It was frustrating, but I assure you, the vast majority of us with labs/VN get back to normal eventually. Time and controlling anxiety and moving around and getting back to a normal life seem key.
Thanks for the helpful reply saying you were still having a hard time at 3 weeks like myself.I saw another doctor today who sent me for blood tests & said stay on the Stemetil.He was enquiring about my mood & said I looked sad,I said that because I have felt constantly dizzy & unwell for 3 weeks....! Doctor said go back in two weeks if I am not feeling better but the time does drag when you feel like this.
Paul Bentley You are not on your own with this Paul. I was diagnosed 3 weeks ago also,but I had it for two weeks before that. I can honestly say that I would prefer pain,to the constant feeling of nausea. I must be in one of the worst professions for this illness. I am a roofer. Obviously I can't work at all. It is of some comfort to know that most people do recover from this.I wish you a speedy recovery.
The time does drag on! Weeks feel like months. Of course you look sad. Oh My!! I wish the Dr's could experience 10 minutes of what we felt, just so that they could understand the weight of it. It changes everything. It was the hardest thing I did... overcoming this. I'm so proud of myself for making it through, and you will be too. You'll make it.
Sharon Hen I fully agree I was also given these tablets and they made me feel worse ( felt sick and tired on them) and they are supposed to prolong recovery I would try to just let your body recover as difficult as it is ( I know am experiencing it still now x
Hi Sharon great video thanks so much for making this. I started with this a week ago and have been told to take Prochlorperazine 3 times a day but only been taking it once a day or sometime twice is it OK to take this in the intial phase and is it OK to do VRT now? I also had some real bad panic attacks with it and had to take low dose valium (1-2mg) but only twice
I have this. It acts up monthly/every other month. Its really really tough 😕
the psychological part of this is the hardest when you get up, like waling on a boat, and turn your head i took 7 months to heal, but it varies stemitel were the best tablets. do not know what caused it.
How r u now?
Hi, I have Labyrinthitis. I have a hearing loss (Profound level) and dizziness. In the video, you said you had a half of your hearing back. It's been 3 years since you made this video. How's your hearing now? Did it come back 100% since then? or are you using Hearing Aid? For me, it's been 6 weeks since I had a labyrinthitis and there has not been any improvement in hearing nor dizziness. I can do the VRT thing. But I am sick worried about my deafness so much more than the dizziness.
I was actually just adjusting to the loss. I am still profoundly deaf in my right ear. My hearing is perfect in my left, so other than a crap ability to locate sounds, I'm living a very normal life. For me, the dizziness was always more of a worry than the deafness. Ask about steroids (oral/injection). We seem to be on the cusp of a potential breakthrough in treatment in regard to the deafness of SSHL. Hang in there. It's quite an exciting time to be coming into the deaf community. The first few months are absolutely awful, but you WILL adjust. No one knows of my deafness unless I tell them. No aids. I'm just getting by.
Congratulations!
Do you have Vestibular Neuritis or Labyrinthitis (viral or bacterial)?
For how long were you deaf before recovering your hearing?
thanks :)
anyone experience worse symptoms when on women's cycle
It is VERY common. I hear this over and over on the FB support pages. Not nice, but at least you can explain. Good news is that when you fully recover, it won't affect it anymore. I don't notice any symptoms for any reason now. Hormones, lack of sleep, stress, dehydration, etc... all can make it worse while you are recovering.
Hi Sharon. I came across your videos because like you, I have recently been diagnosed with labrynthitis. I have complete hearing loss in my left ear and am currently on high dose oral prednisone and antiviral medication. If my hearing doesnt come back with those two things, the doctor suggested intratympanic steroid injection. I was wondering if you had tried this method prior? I would love your input.. I am so scared that my hearing loss will be permanent, and I don’t know how to cope as of yet. I keep waking up in the morning hoping that I’ll have my hearing back. I wake up disappointed. Was it hard to get used to? Do you ever feel afraid that you’ll have the same thing happen to your good ear? Finally, do you wear a hearing aid to support your ear that lost hearing? Sorry for all the questions. I appreciate your videos a lot!!
How are you now Sora? This is me right now. I had my 3rd injection 2 weeks ago. I’m hopeful for the day I feel a teeny breakthrough!!🙏🏽🙏🏽
@@DanaHanna1212 Hi Dana, unfortunately my hearing hasn’t come back yet and I am still not hearing from my left ear, but I do have a hole that didnt heal after the injections which is impacting my conductive hearing. When I got tested they believe my actual nerve that impacts hearing is healing because I had hearing through the bone, so the hope is that once I get the hole repaired, I’ll have some or all of my hearing! It’s a long journey but every day it got better (mentally) and I hope it’s that way for you as well!!
@@하늘엄마 🙏🏽🙏🏽🙏🏽sheesh… what a journey
Hi Sharon, thank you for the video! Do you know anything about stem cell therapy for VN? Im dealing with this right know and I think realistically Stem cells are the only think that can heal the nerve itself. Would love to know if you have any other suggestions other than VRT. Thanks!
For VN or labs or hypofunction… VRT, time, getting comfortable with being uncomfortable, saying yes to outings and environments you don’t feel ready for, controlling or managing anxiety in any way available and what level is needed, routining your day.. same and slightly increasing level of activity and sleep, hydration, fuel, etc, a positive attitude, and believing that you will get better. You know, logically that you will recover, that recovery is inevitable and expected. Recovery isn’t linear but it is destined. It’s a recipe for success.
Will someone talk to me about this? I got up from the couch about 12 days ago and went to the bathroom. It felt like things were shifty from side to side. That was the only issue. I chalked it up to caffeine or sinus. It didn't really get worse but i had some bouts of dizziness days 2 and 3. By day 4 I woke up with massive headache, dizziness, shifty vision, weakness (like when I had covid/ felt like I got hit by a truck) I felt like I was seeing in a dream like state. I was sensitive to friends dogs barking. These symptoms have pretty much been the same from that day until tonight (day 12).. oh and off and on nausea but no throwing up. Does this sound like what a lot of yall have? Thanks in advance
I had that same thing for almost 1 year until I felt better . How are you doing now? Any improvements?
Does labyrinths feels like ears are getting wet from internal..i dont know whta my problem is but i have tha symptoms of like i m floating 24×7,fesls like i will fall at any time more in the darkness,and dizziness with ears blocked feeling
Hi Sharon, I have just been diagnosed with VN a few days ago (I’ve been dizzy/nauseas for a week) I’m on Stemetil at the moment but feel very dazed/un steady on my feet and very tired. I’ve pretty much spent the whole week in bed but do notice very small improvements each day, hoping you can shed some light?
Ah i am the same 😒 started this Fri and today was the worst day.. Got stemetil as well, ah its seems only in the bed i feel better. Hopefully i will get better soon 🙏 and so are you 💓
Very hard to not look at all the forums where people 'never' recover. Thanks for the video! Do you have any tips on traveling? I regularly have to ride in the car for 4 hours at a time. I seem to be improving, and I'm fine while in the car, but once I get out I have a huge setback for the rest of the day. I also have to fly in a plane for 8 hours in a month and I'm apprehensive.
I've flown six time in the past month and have another 7 flights scheduled for work in the next three weeks!!! Flying was great! Felt free. You are still in the early stages, so talk with your pharmacist about possibly beginning a nasal spray and taking a decongestant. The steroid nasal spray helps open up the tubes that make our ears pop. I also purchased Earplanes (amazon) and had no trouble. Prepare yourself that you will be anxious... only natural... and that anxiety can make you feel worse. I didn't have any trouble with anxiety after my first take off. It was an amazing feeling. TIME is the key. Get a few months under your belt and you are good :)
Thanks for replying so quickly! Those are great tips that I'll definitely use! Have you heard from anyone regarding blurred eyesight or a slight eyelid droop in relation to this? The droop comes and goes. I also have been getting weird foot/leg cramping if I walk a lot; maybe my body just trying to keep balance? I have a wild history of health problems, (i.e. benign swollen tongue) so I am hoping its all related to VN and nothing else.
YES!!!! I'm so happy to report that you are NOT alone. Many of us have facial issues with labs and VN. The facial nerve and the vestibular nerve travel through the same tiny hole in the skull and when you get swelling in one, it can compress the other against the tiny hole in your skull causing damage to both. They said if it affects only the facial nerve it's Bell's Palsy, and if it is just the Vestibular Nerve it is VN or labyrinthitis (only difference is that labs is associated with hearing loss). I had bad cramping in my right thigh. I literally had to take a hot bath and massage it every night. It was quite unnerving, because who in the heck would think the two are related. Only think I cannot help you with is the swollen tongue. That is a new one for me... BUT, maybe it is also related to damage to the facial nerve? just guessing. My eye doesn't droop at all anymore, but I get some numbness in my lower lid if I get really tired.
That is great news! And great that yours went away as well! Thanks again!! So happy for you that you're recovered and inspiring others!
Hi Sharon thanks so much for the video I’m on week 8 can go out for short amount of time now I get swaying worse when eyes are closed but wondered did you ever get visual problems like everything looks like it’s moving ? This is my second time getting vn in 10 years :( x
I'm like 3 weeks in now. I don't have the hearing loss but I do have some ringing which comes and goes. The main problem is I walk like I'm an alcoholic, and when moving I have a hard time focusing on things. But at least I'm not completely incapacitated. I hope I can shake this thing.
Same bro. But I'm completely deaf in my right ear with loud tinnitus. I'm 2.5 months in. Slowly slowly getting better
@@leonkennedy3398 Sorry to hear that. Hang in there, and I will too. We'll beat it!
@Zemli Drakona yes we will. I've seen people FAR worse than me. I've recovered alot in the last 2.5 months. The whole world used to feel always tilted to the left. That was so horrible. I'm happy to say that is mostly gone. Now I just have a wobble with head movement and focusing on things in the distance while moving. Im sure that will gradually improve as well. Patience is key
Hoping that you are feeling better 7 months into this “mess”. It’s a good way to describe it right?! Ringing comes and goes still in my hearing ear and it used to stress me out, but I’m less bothered by it now that I’ve still got perfect hearing on that side 7 years later. Hoping you are more steady on your feet. A general rule that helped me was “if I suck at it, or if it brings on symptoms, I need to do more of it”. Good luck.
Do you still have ringing in your ear ?
What's your medication? Thankyou
Hi Sharon, Thankyou for your videos you are an inspiration to me. I am currently 5 months in. The vertigo and swaying has passed but im still left with dizziness and the swelling of the nerve isn’t going down my ENT refused to give me steroids because I’m too young he also didn’t mention for me to do any VRT excerises as he thinks I don’t need them?? But isn’t that the whole point to calm down the vestibular nerve? I’m doing everything I can with eating healthy, sleeping 8/9 hours a night and drinking 3L water each day. Would you recommend I start doing my own VRT exercises? Thanks again for sharing your videos you have given me hope! 🙏🏼
Has your ringing in your ear disappeared?
I’m hoping that a year later, you have navigated your way through this challenging initial puzzle of the illness. The swaying and dizziness can exist long after the swelling of the vestibular nerve has resolved. Unfortunately, we don’t have a way to heal the nerve, so we have to compensate for the loss… which FEELS like true healing and functioning. Our brains are amazing. The key is to calmly get back to doing all the things you used to… safely. Keeping anxiety low. Figuring out if there is a migraine component. I’m so hopeful that you’ve made it through 1 year later. Life on the other side of an illness like this does feel like a gift
I’ve been experiencing this for a month now. I see a VT tomorrow and ENT in 2 days. Is this how you explained your symptoms to the ENT? And how did they diagnose you. What testing?
Sorry for the late reply. Hoping your appointment went well. Often, it’s a hearing test, HIT, VNG, detailed history, etc.
Log your symptoms and questions as you think about them for you appointment.
Hope it went well. Hit or miss with practitioners.
I was given stemitel tablets and they worked great, this was an appalling infliction on me, puking all day first thinking what is wrong ! it is the fluid in the inner ear.
How are you now ? Did the medication help with diziness?
were you on any medicines while you were doing VRT exercises. Thanks you are an inspiration :)
I was on zofram... an anti-nauseant in the beginning of my illness when I was VERY sick. Other than that and the steroids, only vitamins (magnesium and vit B seem to be the supplements of choice for inner ear things).
@@SharonHen what were the steroids. 🌷
Hi Sharon. I was at the doctors this week with these symptoms. Feeling a bit better and itching to go for a light jog. In your experience, would you reccomend it? Failing that i think I will just go a walk instead. Your videos are really helpfull so thank you
Hi Calum. I completely understand the need to get out and work the pistons. It is freeing. That said, there was a time when it wouldn't have been safe for me to run in the acute phase. I could barely walk. It depends on how severe your vestibular injury was, how your balance is, how far into recovery you are, etc. So, try a walk, if you are able, and see how that feels. Talk to your Dr or PT and see what they think. I was mentally ready before I was physically able. That said, I think I had my first run after doing daily walks (longer each day) for about 3-4 weeks. WHEN you do have that first run, expect that you will feel completely strange. I felt like a bobble head that floated down the street. This feeling should pass with time and is VERY common. Be mindful of passing vehicles and cyclists. They can be disorienting. Stay safe and enjoy.
Hi, thanks for the video, I wonder, did your tinnitus improve and if so, how long did it take?
It’s hard to remember but it was 7 months before i felt my affected ear pop. Once I was able to equalize the pressure on both ears, I was able to focus less on the T. I mean it is still there and I still have odd times where it gets louder. It used to really bother me but after the 1 year mark it’s faded into the background.
Congrats of your recovery did you ever have any issues after the fact as its been 6 years.
I'm not sure if you check these comments still. I'm very curious when mentioned being prescribed Hydro Steriods - what you meant ? Is that the same as a corticosteroid?
I've been on Corticosteroids (spray) for 2.5 weeks now (been sick for 2.5 weeks0, I'm not getting worse (or better) BUT I know I WILL get better eventually I'm just in a hurry lol.
As it will soon be 3 weeks on spray I was actually going to ask my Dr if a pill form of steriods such as Prenisone would be a better option . Did you receive spray or pills ?
Thanks
Because I had hearing loss at the onset of my vestibular illness, high dose oral (pill) steroids were prescribed. 50mg per day I believe, for 7 days. I have over the years used steroid nasal spray to help open up my eustachian tubes (my ears don't pop properly as the virus scarred my ETs). The spray has to be angled towards the outside of each eye and into the face (up the nose of course... don't spray it in your eyes lol). Hope this helps clarify. The oral steroids were for the hearing loss, have huge side effects and are not typically given unless you have hearing loss or something like Menieres or an autoimmune disorder.
@@SharonHen Thanks luckily I found a great article the 1st few days I started the spray on an ENT site on how to take it. It was a bit of a challenge putting my head down as my the room would move.
After taking the spray for a month I've now stopped as its recently making my nose bleed a bit.
I have VT on Thursday. Originall diagnosis was an infection in my Euchachian tube, now VN , and who knows what they will decide next week !!
In an ideal world I just want to have preventative measures so it won't come back but that seems unrealistic.
Glad to hear you have stayed symptom free, thank you for responding
Hey,
I'm dealing with what I believe may be a second bout of VN. First time was in Feb. 2015.
Just wondering, did you deal with any rocking/swaying sensations? I seem to have a feeling of internal rocking that is at it's worst when my eyes are closed. It is probably the worst symptom I've been dealing with lately.
Glad that you're doing so much better, it's important to share success stories I think, because of how depressing having balance conditions really can be.
I and many of the people on the FB support groups (such as labyrinthitis support group and vestibular hope and dizzy times) have had those rocking swaying feelings with eyes closed. Someone called it "the magic carpet ride" when they shut their eyes. I thought it was a good way to describe it. I hear from those who have had a setback that they recovery MUCH quicker than the first time around. Your brain has done it once and it can do it again. Hang in there. Keep doing things that make you dizzy and keep notes on how you are feeling so you can see the progress. It is SO slow, so keeping track really helped me. Good luck and I hope you are well again soon.
Same thing I’ve had and ringing in my left ear and fullness in my right ear.
Hi sharon.
Would you please help me. I am too concern for tinnitus. Is there any medicine for it? Please please help me. I am concern if I dont take madicine soon. It may stay for ever.
Hello. I have not been diagnosed yet with Vn but I have quite a lot of the symptoms. I will be going for vestibular testing next week. It's so debilitating I feel like I'm on a boat. I still have hearing in both ears. But I have head pressure over the eye & back of the head. Have you felt that too?? Thankyou so much for your testimony I feel there's hope for me yet.
I have had head, mainly temporal, pressure. Good luck in your recovery. It's a challenging illness to overcome, but entirely possible. You have to keep trying to live your life as best as you can. Good luck with your testing!!! It might make your symptoms slightly worse, but it will be temporary.
Sharon Hen thankyou for getting back to me. You really have given everyone hope.
Expect a roller coaster of emotions through the journey to recovery. You will have bad days where you lose hope, that is pretty much a guarantee, but if you can pick yourself up the next day and keep trying, your brain will continue to compensate and you'll be able to return to your life. Good luck. I'm just heading out for a run! It's freezing here, but the sunshine is good for the soul.
Hi Sharon hope all is well. I went for the tests with the Audiologist his report says I have 20% damage in my right ear. So they have confirmed a vestibular problem.
He referred me to a vrt I've been already and they have giving me some exercises to do which I feel is helping I also try to keep busy walking everyday. I think I may have ETD has my other ear always feels full/blocked even tho I can hear ok.
I find that my eyes feel like I have pressure when moving them did you have this?? I still get head pressure to but Its not as strong as before.. I'm 2months into this..
I get strong anxiety and fatigue also did you get this and how and what did you do to cope.
Sorry long message.
You are on the right track. I also had/have ETD. It took about 7 months to begin to ease. I no longer have any pressure in my ears, but they still pop, click and crackle when I swallow. It takes a VERY long time for the pressure to ease in most people, so I'm happy yours has already begun to ease. Anxiety and fatigue are nearly impossible to avoid with vestibular issues. I am convinced that no one can have one without the other. All I can say is keep doing exactly what you're doing, and it should ease. VRT and forcing yourself back into your "normal" activities are great ways to build stamina and overcome anxiety.
Can environment be a factor? I was going through layers of issues about my job, nervousness, then labored breathing, difficult sleeping, crying. My supervisor and I don't get along. After being away for a month I decided to go back. No bright colors, lights and distractions like a grocery store. After a conversation with my boss it went down hill and fast. The more I talked with coworkers about the craziness of the job, blurriness was in and out. I couldn't reason, focus, etc. I clocked out. HELP!!
I think that anything that depresses the immune system can make you more prone to getting sick with this. Sorry you are going through this. Hang in there... it gets better.
Sharon Hen Thanks for your encouraging response. Did you have a trigger that caused your VN and do you avoid it so there isn't a return?
I had a sinus infection. That was what started this mess for me. No need to avoid anything other than to just try and be healthy, get sleep, etc.
Have you tried any acupuncture for either your hearing loss or balance issues? How much hearing loss did you experience and how much was restored?
yes, I did a few months worth of sessions with acupuncture both with my physio and a specialized acupuncturist. It helped me relax, which was no small task, but didn't restore any hearing right ear... it was profound and remains profound loss.
Thank you for your video, did the corticosteroids help with ur tinnitus? The doctor prescribed them and i am afraid to take them, have u encountered any side effects? plz advise?
Sorry for the late response. I don’t believe the steroid helped me specifically with my Tinnitus, because I was unable to regain any hearing. That said, in theory, for the 1/3 of people who regain some hearing and the 1/3 of people who regain all hearing on steroids… it probably could or would help in those cases. For me, it was time and learning to tune out my T. It is my constant companion, but I don’t “hear” it unless I listen for it. It’s hard to describe, but absolutely amazing how the brain can adapt once you decide it isn’t threatening.
God bless
Two and a half years and no answers. I just want the surgery.
So sorry to hear that you've been suffering for so long. I know many of us suffer without actual diagnosis, but with VRT, pushing ourselves to get out and into places that make us dizzy, that many of us can recover despite not having a diagnosis. Luckily, regardless of the cause, the treatment for vestibular disorders (other than autoimmune disorders like Menieres) seem to be the same... VRT, habituation, and getting our anxiety under control. I hope you find relief one way or the other very soon.
Hi Sharon how are your feeling!? Did your hearing recovered fully ?!!! Thanks a lot.🙏❤️
I feel great despite complete and (for now) perm loss in my right ear. Just got back from a run.
@@SharonHen i am glad you are feeling better. I had an ear infection, two month ago. Which was treated with antibiotics and drops. I started feel dizzy on Friday night and woke up with the dizziness, nausea and a panic attack. I have a very continues noise in my ears. But after seeing the GP he gave me again antibiotics until I see my specialist. Because we had long weekend holidays.
But since Saturday I haven’t feel any similar symptoms just then noise. I’m just wondering if my issue is Labyrinthine? I mean the dizziness should continue if that’s the case? Thanks Sharon.
@@Jack14432 it's hard to say. I don't diagnose, but I can speak to trends in the illnesses. Generally, people with mild cases of labyrinthitis can have a horrible onset with a rather quick recovery and some mild hearing loss. More severe cases can again begin strong and last months (and even up to years) depending on how the anxiety and avoidance behaviour is handled. Could have been TMJ and a stress event. Again, all things worth considering. If you, for any reason, feel your hearing is diminished, early treatment with Steroids can help recover your hearing. That would be the only thing to watch out for.
@@SharonHen You are an Angel!!!! My life changed instantly 5 weeks ago (our stories are almost identical, it seems, except it’s my left ear that’s currently deaf).
This is the most inspiring story I’ve seen/heard since I’ve started this interesting journey. Thank you again❤️🙏🏽.
I’m so happy to know you are feeling “normal” again (despite the hearing loss)
@@DanaHanna1212 5 weeks into it, i was still very altered, with daily symptoms. This time, the 5 week mark, can be exhausting. Trust the process and keep doing all that you know to do to get better. Good luck Dana! You've got this
What specialist diagnosed you???? I'm so confused as who to go to... Please help!!!
Did anyone have root canal treatment before this started???
I know of at least one guy who had his onset after dental work.
Is it normal that after taking corticosteroids, I feel something is moving in my ear?
Months and years? Are you saying your vestibular neuritis recurred?
No. I followed the majority of people and had a sudden horrible onset with a slow recovery. I’ve been well for 7 years.
Ive been suffering for 26 years!!..I have visual issues and have blurry vision and cant focus....checked vision and have 20/20 vision...I have balance and equilibrium problems 24/7 always!!..I have a feeling of sloshing of fluid in the middle of my head..feeling of pressure and shooting pains in my Eustachian tube area, side, back, and on top of my head, and get nasty headaches...I have anxiety and depression as a result not to mention the chronic dry eye syndrome....my life has been hell and don't know what quality of life is.....Ive gone through all of the nuerological and inner ear work throughout the years......PLEASE HELP......ANY SUGGESTIONS OR INFO. WOULD BE WELCOME!!!!........I have compiled and am starting a vestibular/equilibrium rehabilitation program and I hope and pray to God it will help......to lose 26 years of quality of life has been mentally and physically crippling to me......Thank you for reading.....Ron
So, what about eustachian tube dysfunction or ETD? I know they have a group of support on FB as well. I have eustachian tube dysfunction on top of labyrinthitis and sudden hearing loss.... I hear it is ofter precipitated by a virus that can swell and scar the eustachian tubes. I know the US has started doing eustachian tube dilation surgery... not without risk, but there is a specialist you can see who is apparently amazing and helpful. I can't remember his name, but he was on the Dr's show. I'll look it up for you. There are exercises you can do to help open the eustachian tubes (go to FB and look up "Ear Popping Clicking Eustachian Tube Dysfunction Support Group ETD). The exercises and discussion on what helps is there. I suggest to go see a dentist who specializes in TMJ. That seems to be an issue with many of us. Many who have the custom made bite plates to sleep with that prevent grinding have relief of symptoms. The Ear Popper (available on amazon) has helped open up my tubes, but it took months to work (but if you have been suffering for years, it might be worth it). Do you feel better after taking an antihistamine or sinus med? Have to be careful with BP if you take them for long periods, but I take them on my bad days. I also use a steroid nasal spray, but google how to get the spray into the eustachian tube or ask your pharmacist. Hope I gave you some food for thought. Dentist to check for TMJ, sinus med, nasal spray (steroid sprays can be used longer than over the counter spray), exercises on FB support group and try to research about the eustachian tube dilation procedure. Have you had grommets? tubes in your ears?
I never knew about Eustachian tube dysfunction.....Sharon thank you so much for all of your help and information....my life has been a mess and I haven't had quality of life in all these years...im now 50 years old.....im extremely active and have been an avid weightlifter for 35 years now and my diet is very good...none smoker...I do not use drugs....and do all the right things in my life............yes my right jaw by my ear does pop on occasion and of course when I told this to my regular doctor and he checked it, it didn't do it..ugh......I also have strange feelings inside my head almost like the feeling of water moving around in a glass and I get shooting and tingling sensations throughout my head, from my Eustachian tube area, and near my eyes.......All of the nuerological and inner ear tests that I went through back in the early and mid 90s came back normal........Definitely my vision is cloudy, I cant focus when I move my eyes.....I am starting this vestibular rehabilitation program........I had sinus surgery back in 1992 which really upset my equilibrium at the time!!............my hearing was in the normal range last time it was checked 2 years ago and I do seem to get some ringing, hissing, or tinnitus in my left ear........ANY INFORMATION you can give me would be so greatly appreciated......I hope your condition is improved and is going away....thank you..Ron
Hi Ron. I'll be 6 months into labs tomorrow!!! Quite an anniversary of sorts. I've come so SO far and I'm so happy to be feeling well. I feel like as the months tick by without incident, the worry of it "coming back" which is super rare, lessens. It's really great. I'm so happy my information helped you start to sort things out. I did purchase the "earpopper" through amazon and it has helped to VERY SLOWLY open up my eustachian tubes. I also like the steroid nasal spray (prescription only in Canada). I truly hope you are getting to the bottom of it. Eustachian tube dysfunction was the root of all my problems and I feel like they'll be coming up with a solution (like the balloon dilation) that will be more easily accessible. Hoping and praying, but back to enjoying a full life.
I had it 2 times in a period of 5 months. How is it even possible?
Anything is possible, but, if you elaborate, some things present more likely within a 5 month period. Generally VN and labs is a one time horrible, life altering, reality questioning event with an often long and arduous recovery. If you are symptomatic (heavily), with remittances lasting until the next episode, there are other illnesses like MD and VM and BPPV that can present in this way. It is possible to happen in labs and VN, but it is important to try to figure out what beast you are dealing with. Each vestibular disorder has a slightly different treatment finesse.
@@SharonHen can you say what those abbreviations are? Thank you
When did the ringing stop in your ears as I have this now
The ringing, for me, is due to hearing loss. Because I haven’t regained hearing in my right ear, it never went away. That said,y brain habituated (got used to) the sound and I can only hear it if I actively try to. Make friends with it. Tinnitus doesn’t always mean damage. The volume doesn’t mean that things are worse or better. And honestly, I think it has a protective factor to your brain. In an ear like mine, with total loss, my brain still “hears” the T. So, I made friends with my T and it quieted down. You’ve got this.
I was wondering... How are you today ^ Do you still have symptoms ^ How do you cope with that ^
Veronique!!! I'm feeling fantastic today. I'm living a normal life. It's sometimes hard for me to watch these earlier videos because honestly, I look/feel like a completely different person now. Recovery from a vestibular illness is daunting, arduous, and often changes our personalities and makes us anxious and even depressed at times. It's important to recognize this and to not be ashamed of it, but to acknowledge this so we can stop discouraging and hopeless self talk and focus on our gains and that recovery is possible.
Just got diagnosed with this yesterday, started oral high dose steroids and intra-tympanic steroid shots. Was wondering, aside from the hearing loss, any long term consequences? Able to get back to driving/running/other normal daily activities?
I'm 100% and have been for months. I'm running a half marathon on my 1 year anniversary of being diagnosed. It will be a hard few weeks/months for you, but I promise, you will eventually get your life back. If anything, everything is a little sweeter now. I just spent 3 hours in a busy salon getting my hair done and it wouldn't have been possible for me in the beginning of this illness. You get used to the deafness... I honestly don't even notice it much now and neither do those around me. You are doing all you can do with the steroids. The only thing I would recommend is to get a VRT referral and get started with that ASAP. Some ENTs prefer to wait a few weeks, as many get better on their own, but the key is to start VRT as soon as you can, to speed compensation and healing.
Thank you so much for your reply. I definitely plan on asking about VRT at my followup appointment, for now I have been doing some exercises off your channel and other channels. Do you have a recommendation as to how many times a day to do these exercises to start? I know you said not to do too much too soon, but a ballpark number would be helpful. Thank you.
Pick two or three exercises that make you feel funny or off and start with two or three times a day... then slowly add an exercise a week, or sooner if you feel up to it. The VRT will have a better idea as to where you are and what you need, but for me, I did 2 exercises three times a day then every three or four days, they would add one. Walking is key right now too. Just try looking straight ahead if you feel weird.
Sharon Hen Do you remember dealing with minor vertigo issues during your recovery? For me, two weeks out, I'm dealing a lot with slight dizziness when I nod my head or turn my head sideways rapidly. Got in touch with a PT and started VRT which I hope will help with this. Any idea on the sort of timeline it takes for this to resolve if you had this (or if it resolves?) Thank you for taking the time to answer my questions, this has been a complete shock to me and can't find too many folks who have dealt with this. Been watching your videos because they make me feel hopeful that I will get better too
i am struggling to recover from imbalance, my right leg is affected due to Neuralgia, i can not walk properly
Sorry to hear you have a few things going on. That said, get a PT with a good imagination who can treat you. Many of the exercises involve just sitting and or standing with turns of the head or bending at the waist. I’m assuming that you are properly medicated for the neuralgia or trying to control the underlying cause of the neuralgia?
Do you have any idea what caused VN for you?
Yes. Ultimately, it was likely viral… and my personality. Three weeks before I fell sick, I was training for my first full marathon and had an awful sinus infection. My in laws were visiting and I decided to volunteer for a stem cell drive for a little girl with cancer. I remember running 27km on sat, quite sick, and talking to people at the stem cell drive with a fever the next day, knowing I had company to entertain for that night. It was obviously too much. I recovered from the cold, but three weeks later, woke up spinning, and deaf.
This was before covid.
Hello,
I seemed off balanced since like forever :( That i'm getting used to it but there are days when I can't handle it anymore. It affects that things that I wanted to do. :'( I had on and offs vertigo since last 3 years and yesterday I started having vertigo again I did epley exercises and it was gone but I still feel off balanced but no spinning sensation and not worse than vertigo but still when I lay down I feel like i'm sleeping on a boat. Is labyrinthis/vertigo related with each other? Let me know. :)
Oh Ella, I have been there. BPPV is treatable with the epley, so that is likely what you are dealing with. I remember someone in one of our support groups calling the days following the epley a "vestibular hangover", where your crystals that were displaced are likely back in the cochlea where they belong, but where we are dealing with the after effects, the anxiety, the worry of will it come back? the constant checking in on our symptoms and also with the fact that we might have a few tiny hairs still loose in the semi-circular canals. 40% or so of us with VN and labyrinthitis develop BPPV. Luckily, for most it is a one time thing, but I still sleep with my bad ear up (many of us do), to keep those hairs in place when I'm lying down for long periods. Hang in there. If you have the means, a physiotherapist specializing in VRT can do wonders. Dix Halpike might also help over time, but will make you feel worse in the beginning. Some people find they need to do the maneuver as maintenance everyday, week or month. You can always chat with someone on the FB page "vestibular hope". People from all over the world on the site, so someone is always up if you need to vent about the frustration or if you are just looking for some hope... Someone just ran a half marathon... someone who couldn't walk straight six months ago. Always a little sprinkle of hope on the page.
Sharon Hen yes you are absolutely right anxiety kicks in but before I even have vertigo, I used to feel off balanced all the time which makes me realize maybe I have them both. BPPV & labyrinthis. Now I dont have the spinning sensation but still 99% dizzy so even tho vertigo is gone now there no feeling of recovery still. but thank you. Ur sweet smile and angelic voice gives me hope.
Hi Sharon wanted to know what was ur symptoms??
I think I’ve had most symptoms. Including the rarer ones like sound sensitivity and peripheral motion, insomnia, weight loss, etc. I was constantly dizzy for 6 weeks, 3 days. Constantly. Then I had moments of normal, but remained predominately dizzy for 7 months and on/off for a year.
Now just imagine how this must feel for an animal that relies so much on Balance like a cat ! Absolute horror !
I wonder how an animal perceives and responds to an altered proprioception. I wonder if it triggers their anxiety much in the same way it would us, or if it is less impacted.
Hi Sharon, I went deaf last week whilst out and woke up with vertigo. also tinnitus in my ear is terrible. I'm relaxing in bed, but I'm worried. how long did your tinnitus last, and how are you coping now
this is my daughters account so ignore the name. I'm their dad 😊
Hi Terrible Twins blogs dad :) You STILL HAVE TIME... but You need to get into see a Dr. ASAP. Preferably an ENT, but even a GP can help you if you give them some guidance. With sudden hearing loss, vertigo, and tinnitus, your best chance of regaining hearing is to get on oral steroids (some Dr's even opt for doing injections directly into the ear drum). For me, they started me on them on day 1 and I had a 7 day oral dose of 50mg of Prednisone. It decreases inflammation and can bring back hearing and prevent further damage. Being on steroids wasn't exactly a pleasant experience and you have to be very wary of side effects, but it is the gold standard for people like us so we have a chance of getting our hearing back. I don't want you to have any regrets. Please, at least go and see someone. I am 6 months in and 100% NO DIZZIES (I am so so so thankful to have that behind me). I am deaf in my right ear, but trying out the new CROS hearing aids to help. I'm back to doing everything I did before I fell ill. Hang in there and keep me posted. Steroids aren't anything to take lightly, but I really don't want you looking back and saying "what if I got on them in those first few weeks".
Hi Sharon, I finally got to see a specialist and I didn't have labyrinthitis, nor menieres, but had suffered a blood clot on my brain, which starved the ear of blood. all the hairs in the cochlea got damaged and sent me deaf. which is really annoying. I'm happy with the deafness but unfortunately it left me with tinnitus. what a bitch. thinking I might consider a cochlear implant, to restore hearing and relieve tinnitus. did you have tinnitus, and how is the CROS
Thank you for your response. Yes, I have tinnitus. In the early hours, it was screeching so loud I couldn't hear anything in my good ear. They had wondered about a blood clot for me as well, but my MRI came back clean. I also had damage to the hairs in the cochlea (BPPV) and the Epley maneuver did help with that. Good news is my tinnitus continues to improve. I only hear it now when I think of it, but it is always present. Mine now only sounds like the hum of insects on a VERY hot day. The CROS system (both the Samsung Signia and the PhoniK) did help to make me feel more "normal", but I'm waiting to purchase until they come out with the new rechargeable one. Signia is coming out with the single rechargeable one (not the CROS) this year, so it will only be a matter of time for the CROS. I have little ones at home and worry about one of them swallowing a stray one. I don't "need" them, but they absolutely help. Worth a trial. It takes at least 3 weeks to get used to the new normal.
Hi Sharon, my MRI came back clear, but he was convinced, even before he saw the scan based on what i told him of how it came about. Im not too bothered about the deafness, but the tinnitus. My tinnitus in the bad ear sounds like crickets too. Also it seems to get louder when Im in busy areas and cafes etc, which is really annoying. I hope it quietens down, its been 3 weeks, but Im still worried about the T. Im considering a cochlear although haven't had pricing on them yet. Will keep you updated. Its nice to liaise with someone who is going through what I'm also going through. Good luck going forward
Thank you for this video! I'm 10 days into VN, no hearing loss or major dizziness/vertigo. I just feel off-balance and have been in a fog/daze/tired with anxiety ever since.
My biggest problem is crowds, I feel overwhelmed like I cannot process my surroundings, is that normal? I know I shouldn't complain, even the ENT said this was 'mild' Labs/VN but I feel like a circuit board is fried in my brain.
So many of us have had this feeling. It's VERY common, and VERY annoying. I truly hope it passes quickly for you. I remember not being able to read and watching tv was tough. I felt myself zoning out. The brain fog is awful and for me, it took a while to go. It did go completely though and I hear it does for the vast majority. In crowds, your vestibular system gets overwhelmed and it causes anxiety. All the noises, lights, movements, visual stimuli... it's like VRT to the extreme. I kept exposing myself to shops and crowds, but only in small doses. Overall, I think this is the #1 complaint... trouble in crwods and shops. Good luck. Sounds like you'll make a full recovery.
Thank you so much for the reply- huge relief to hear it from someone who went through it. Sending you good thoughts/prayers!
@ibra józef 🇵🇱 hi ibra, I also have exactly the same symthones. How are you doing now? Are you recovered? Im 4 days in and its only improving a little bit I guess. In taking antibiotics the get rid of the virus/infection I have that triggered all of this.
How are you now? I was diagnosed with VN 4 days ago
Its feeling like something run right?head feel full lightheaded🥺
Hi wen did the ringing in ears pass
I still have constant ringing in my ear. I have habituated to it and no longer notice the ringing unless I listen for it.
I've been feeling dizzinness for about 6 months now, also when it's too bright I see black dots infront of my eyes, whenever I sit, lay or look at cars I get dizzy when they move. Please how do i cure this I don't feel normal
Seek help from a GP first who will refer you to a specialist in your area. It could be an ENT, vestibular therapist, neurologist or neurotologist. Every geographical area has their own specialists. You may need a VNG, hearing test or HIIT to get an idea on what illness you are dealing with. Once you know what you have, you can get a plan together that may involve vestibular rehab, habituation, optikinetic exercises, committing to walking daily, medication, etc. first things first, you should see a specialist and find out if it is VN, VM, MDDS, MD, BPPV, PPPD, etc. It’s overwhelming, and I’m so sorry you are feeling dizzy, but you can get your life back. Have hope and start with trying to find out what is going on. Good luck.
@@SharonHen ive had á HEARING test snd it was okay
@@clipstv7 glad your hearing test went well. The key will be to try and narrow down what is going on by seeking guidance from the medical community or doing research on your own. Once that is done, there is a lot you can do to help yourself. You've got this, just start writing down symptoms, and triggers, and try to research who might be the most knowledgable specialist in your area. Good luck
Why have I not got my hearing back? I wear cross hearing aides?
My hearing never returned. Statistically, 1/3 regain all, 1/3 regain some, 1/3 regain no hearing. Best bet is early treatment with oral steroids or injections of steroids into the ear, and sound therapy for your deaf ear. Cross aids didn’t suit me. Hoping for a better solution in the years to come. Google research into regrow the of inner ear hair cells by frequency therapeutics. It gets better. You will adjust.
Hi
I need to ask did anybody get viral infections again during the recovery phase. I was feeling better after three months but today I got viral infection again. Do i need to start all over again?🥺
Sorry about the late response. In my experience, you never start over again. You never go truly back to stage one. The brain is constantly changing and adapting. You never lose what you’ve gained. You can have increased symptoms from increased stressors in life, but symptoms don’t mean damage. If you are still in the recovery phase, you may experience some decompensation, not square one, but a little blip. If you are able, still carve out time and energy to do your VRT exercises… even if it’s all you do. When you recover, bump up your activity level back to pre-illness. You may need to adjust, and that can be uncomfortable, but it’s worth it. The next time it happens, the blips generally get easier symptom wise and are generally shorter lived.