First off, I’m so sorry you are going through this. Week 4 was AWFUL for me (and I recovered) and I think it was because I expected it to improve by now (Google told me 2-4 weeks…) and one month in, you are wondering what the future holds. So, relief from anxiety can come in many forms and what worked for me may not work for you, and some of the things that you try now may work better later in recovery. The biggest thing, for me, was to focus on my belief that everything was going to work out. I was going to have good days and bad, good moments and bad, but I was going to recover fully, and that wasn’t an option. Things like box breathing (4,4,4) or my favourite breathing exercise (4,7,8), meditation (even with a relaxed gaze… I couldn’t close my eyes in the early phase of recovery), routining your day (activity, sleep, VRT, meals, water, etc), taking breaks from researching the illness, phone breaks, getting outside, distracting the mind from symptoms in ANY way that works for you. Just know that the only constant in life is change, for better and for worse… so make choices your future self will thank you for. Trust yourself.

It took me about 6-7 months to feel normal again. I had a blip at 7.5 months that I let the anxiety get the best of me, but it only lasted a few weeks. I still am probably slightly more anxious than the average person… just generally… but I’m working on it. Time is the biggest healer. As the symptoms ease and you find your way through it, you’ll generally have less anxiety and more confidence in recovery.

Sorry in advance… long explanation. I do believe those are excellent tools to aid in diagnosis for so many. Luckily, I had a facial droop at onset (sounds weird, but having a droop ruled out many other things). I was offered additional testing for “%damage” if I was wanted to travel off island. I declined. I had a wonderful ENT who was able to diagnose me based on my symptoms, a bedside HIT and an MRI. I had Bells Palsy at onset (inflammation of my facial nerve, with facial drooping… scary). It essentially let my ENT know that I was dealing with an “itis” and because of my profound hearing loss it was labyrinthitis as opposed to vestibular neuritis. I had the trifecta of Menieres symptoms, he talked about that, but also had Bell’s palsy, so it was ruled out. He did a bedside HIT. My eyes seemed to take a very long time to settle and I was sick afterward. I couldn’t walk after the bedside HIT and was placed in a wheelchair. After an MRI, to rule out MS and acoustic neuroma, he levelled with me. He was confident in my labyrinthitis diagnosis. He knew what this was, that my recovery would be challenging, but that I would be able to lead a normal life again. He was right. Sleep, lowering stress, and staying positive and getting back to life were my priorities. They still are. Full disclosure, he and I work at the same hospital and I saw him regularly both before and after my diagnosis. I trusted his opinion. I also knew 2 vestibular physiotherapists before getting sick (seems so serendipitous now) and trusted their opinion about just moving forward with a treatment plan. I think knowing how “damaged” my vestibular system was would have been to my own detriment. Take that into consideration too. Know yourself enough to decide if it is right for you. I didn’t want to know how high the mountain was… I just wanted to start climbing.

@@SharonHen Thank you for the response! Please don't be sorry! Thank you for taking your time replied this message. It is very informative and helpful. I am sorry that you were going through such a rough experience in vestibular disorder. I honestly, have been hesitant about the Caloric test. I heard many scary stories of it. Currently my dizziness have subsided. However, inner ear pressure is my biggest daily challenge now. Every time, I have to pinch nose and blow it gently to make it pop. When my ear pressure acting up, I would experience more swaying and head pressure, and definitely feel fatigue. Also, I am extremely sound sensitive as well. I am currently not sure which tests should I take to sort this ear pressure out. My first and second Ents just were not helpful at all. I am just really confused now

Ear pressure was awful. I invested in an “ear popper” from Amazon… I was so desperate. Even that would not pop my right ear…. The air came out near my eye. Lol. Not fun. It was months… thinking about 6, before I could feel even a slight pop. I researched how divers pop their ears. It was a really annoying symptom. It does ease over time for vast majority of us. I researched Eustachian tube dysfunction and knew that t tubes… like for kids only t shaped to make them perm, might help, but also would be annoying (I swim). I find, honestly, that putting in ear plugs or even air pods on really “bad ear days” helps. I also stopped chewing gum and tried to consciously relax my jaw. Your bad pressure days will get easier and you wont be bothered by it as much as time goes on. I also have a pressure gauge to just kind of reassure myself that the weather is almost always the cause of the pressure.

@@SharonHen Thank you Sharon for all these details! You are a great life saver! I do notice these days, my ear pressure has been lessen somehow. Also I checked out The steady coach channel. Where she mentioned Neural Circuit that would caused kind symptoms. One of them was ear pressure as well. She mentioned "Human Danger mode" that we have. I paid attention to my anxiety and panic when my symptoms come up. If I calm down nervous system as much as possible then less likely to have some extreme ear pressure. In my case, it helped a bit. I will keep doing it to see how it goes!

@@SharonHen Hi Sharon, Thank you for sharing experience again. I found that weather changed could cause the problems as well. The weather is getting cold a bit now in Toronto, Ontario. I would feel extra off balance and ear pressure. I have been worried a lot. But if you saying that would take certain time to get better. I'll keep that as my hope. These days, I have to pinch my nose few time a day to blow gently. Somehow, I feel like the tubes keep losing air like a balloon that I need to fill up air in there by pinching my nose. If I do not do it I would feel discomfort such as mild ear pain and dizziness and extra floating sensation. I am wondering did you ever experience same things when you had pressure? So sorry for all the questions.

I’m sorry you are going through this. Yes, I had awful ear pressure/aural fullness. I was so desperate for relief I purchased an ear popper off of Amazon to help open my Eustachian tube. Unfortunately, it didn’t work (and was hundreds of dollars). I think I tried hot compress along the jaw, I began sucking on mints and stopped chewing gum, I tried to consciously relax my jaw, etc. the biggest help for me, was ear plugs. On the really bad days, I’d pop my pods in or use earplugs and it would feel better. I absolutely needed to use earplanes on flights too in order to tolerate pressure changes. Time is the biggest healer.

@@SharonHen Thank you for the response! I hope you are doing well! I think I am going to try earplugs to see how it works. Every time, I asked the doctors, they just can’t answer why the fullness there. My ear pressure has subsided, however, I would still feel fullness or ear pressure off and on. So there is no medication involved with this symptom for you?

And one question, Sharon. Did the ear pressure eventually go away by itself 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.

I’m so sorry you are going through all of this. I’m learning so much about teeth and their connection to different parts of the body. I’ll keep you in my thoughts. Any journey with a vestibular disorder isn’t an easy one, and yours sounds particularly difficult

Hi Sheldon! VN one of the MANY things that can go along with Tinnitus. Important to get a hearing test to rule out hearing loss. Hearing loss with VN symptoms is often called Labyrinthitis. It’s treated much in the same way, however, if there is hearing loss, they may prescribe a week of oral steroids or do an injection of steroids into the middle ear. That’s only if there is hearing loss.

Yes i got vestibular neuritis dec 4 2023 i got my blance back 3 weeks ago i had a ent hearing test and my hearing is 100% mri of brain everything was good but the last 4 weeks i experience tinnitus it is getting way better thank you so much for responding

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’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.

No. I followed the majority of people and had a sudden horrible onset with a slow recovery. I’ve been well for 7 years.

It was really hard. Some nights were harder than others. I had certain positions that were less symptomatic than others. I know some people who have had success with slow release melatonin. SSRI can help if stress is causing sleeplessness too. It passed for me with time. In the beginning, I slept slightly inclined with two pillows

@@SharonHen Thank you. I just started an ssri. How did you notice it got better, did it get weaker in intensity? Also would you kind of just try to ignore it?

Hi Sarah, how are you feeling now?

@@SheilaBR hi, I am doing so much better!! Thank you for asking. I’m not quite 100% yet but I will get there with some time and patience :)

@@SarahvatlandHi Sarah, do you ever feel like gravity or some force is pulling you down while sitting or that your getting pushed to one side while sitting or walking? Also, did you get a VNG test for your diagnosis?

It gets better. Stay strong.

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

No. I’m completely deaf in my right ear 7 years later. My left ear has excellent hearing so my life feels normal despite my hearing loss.

@@SharonHen I’m having this labyrinthitis froms past 3weeks vertigo was gone but imbalance is present,tinnitus is present,up to yesterday I’m able to hear lil vibrations of sounds around me but today I’m feeling complete hearing loss which terrifying me

If it’s VN and/or LABS, they often consider the illness “self limiting”. I remember being quite annoyed hearing that. After all, having 24/7 dizziness, nausea, etc… can feel disabling. That said, return to work (even before I felt remotely ok) propelled my recovery. If you are able to ease back part time a few days a week and work up in week 2,3… that’s probably going to be a kinder adjustment, but if you have to go back full time, that’s ok too. Just prepare to take it easy in the evenings, making time for any VRT you are doing. Order in, have someone else clean and cook if possible, get your sleep, and expect symptoms knowing they will pass. The first few weeks feel impossible, but by week 3, things will probably ease a bit. Good luck returning and always check with your Physio for tips.

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

A late reply. Hoping you are already on the mend. Maybe this will be your last time experiencing these feelings

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.

Hi , any update ? How are you feel now?

Sorry this is all happening to you. It sounds like a very challenging situation. I’m hoping that, because you posted this a month ago, that things have improved in some capacity. Just keep looking for answers.

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

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.

The first run and possibly every run for some time will be emotional… in the best way. I’m training for my first full marathon now. Seven years ago, I was doing the same thing, training, when I fell sick with a vestibular disorder. I’m so excited to bring this full circle and finish what I started 7 years ago. May the wind be at your back… I mean that about running and also not about running. Hugs

I could have benefited from an SSRI or something shorter acting like Ativan. That said, I was too scared to take anything but zofran and steroid nasal spray. I was given oral steroids in the beginning to try to regain hearing, but would have probably chosen steroids injected into my middle ear if given the option. I didn’t sleep for 3 days when I first started on high dose steroids. So… that wasn’t fun given my dizziness. What you should take depends on who you are and where you are in this journey. Some, like me, decide to do it as naturally as possible. Magnesium can help with anxiety and I did take that.

Hi Katie, how are you feeling now?

Sorry for the late reply. I’m profoundly deaf in my right ear but the T has faded into the background of my life. To meet me, unless you see me trying to locate my ringing phone… you’d never know I was 1/2 hearing. I forget myself that I have hearing loss. A full future awaits you regardless of how little, if any, hearing you recover. Hugs. It’s a journey in the beginning.

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

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.

An entire life awaits you. A full, healthy, fulfilling life. It’s very normal to feel depressed and anxious because of the darkness and isolation that comes from suffering with this. You are not alone. Many who have come before you are now leading a normal life. Have hope and keep moving forward.. however slowly is necessary.

@@SharonHen this means the absolute world thank you Sharon! ❤️❤️❤️❤️🙏🙏🙏

My husbands birthday is Nov 22. An aside, but I remember meeting an OT whose twins were born on the day I woke up dizzy. He felt bad mentioning it… but it honestly gave me comfort knowing that people often have their best days on the days I’ve had my worst. Know that you are not alone, that there are people who have suffered like you are and have gotten through it. Winter was my best season for dizziness. The constant cold of winter made my symptoms more tolerable. Change in season still brings on aural fullness for me. No dizziness… but it’s annoying.

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.

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.

Yes. I absolutely did. I describe it as living life behind plexiglass. I felt present, but adjacent. I had moments where I felt like I was watching myself and others live life. Like a movie. I remember asking my husband if I “seemed ok” around my family or friends that would visit. It’s really hard to describe… but yes… I felt this weird way that many of us do who struggle with vestibular stuff.

I still have T 7 years later… but I only hear it when I think about it. It’s settled into the background of my life. So try not to focus on it and just keep going. 7 years in, and I live a normal life. Even having no hearing in my right ear. Well… I completely suck at hide and seek and also finding my phone if it’s ringing… but otherwise… I’m good.

I understand. I won't bother you with the details as my story is the same. It takes a bit of time to get used to it but thankfully, like you, I have moved on. Good luck in life and take care@@SharonHen

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.

Settled into the background of my life after about 8 months

Has your tinnitus disappeared?

@@omarbilbao7460 nope there for 5 years

@@rishabhjain4671 what was the cause of your tinnitus?

Yes, but it’s settled into the background of my life. So much so that I rarely hear it. I think it has protective purpose for the brain, so I’ve made friends with my T

Yes. Many. Frequent. Sometimes they would wake me up in the middle of the night. Hugs. It’s not fun. At all. But the sympathetic nervous system eventually chills out and settles down. You can do things to speed up the process… like meditation, breath work (4,7,8 is my fav), SSRIs, EMDR, CBT. You’ll get here. It’s hars

How are you doing now?

I am so hopeful that 10 months later… as I’m finally getting the chance to reply, that your illness has turned to wellness. You’ve got this Rachel

Unfortunately it’s not getting better…seeing consultant today and specialist early December but I remain positive that something can help with symptoms. 🙏🙏🙏

Sorry for the late reply Amy. It’s very frustrating and stressful to get misdiagnosed… but it is quite common. I hope, 10 months later, you are feeling much more comfortable in your skin.

Awww. Yes. That’s me in a nutshell. I remember when the illness hit I lost myself a bit. I couldn’t find joy. I couldn’t see a beautiful sky or smile at a baby. I changed. The illness is a joy suck. But, as you can see, I found my joy again. I find it every single day. I SEE people outside of myself again. It’s important to see the progress in yourself too, or listen to others when they see it in you. I’m 11 months late responding, so I hope you are well on your way to recovering.

@@SharonHen Thank you, Sharon. I still have to work on doing the vrt often every day. I feel pretty burned out, but can’t give up. My main triggers of poor sleep and anxiety, I feel keep me from progressing. I tried Lexapro very briefly, as it really heightened the dizziness. I’m going to try Amitriptyline for sleep soon. I need to watch your videos again. Any advice would be very appreciated. I’m so happy you’re feeling better.

I would say that Lexapro and Effexor are currently the 2 that I’ve seen help the most people.

@@SharonHen thank you! I hope you’re doing well, Sharon! I’m sure this has been asked, but how often did you do the vrt each day?

You are still who you were. You are still a visionary. Just keep going. I believe that you can regain all and then some after being vestibularly injured.

Once a runner, always a runnwr

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.

The cause of VN is often idiopathic… and many suspect viruses to be the culprit, when no other known cause exists. The problem, from time to time, is that the body relies tremendously on a functioning inner ear bilaterally, functioning together, to live life. When the inner ear is damaged on one side or both, and they don’t communicate to the brain properly about where the body is in space (proprioception) it impacts every aspect of your waking life. It also creates what I call vertigo or imbalanced induced anxiety, which behaves a lot like any other variety of anxiety. The problem is that in vestibular disorders, in order to get the brain to adapt, you have to do things that make you uncomfortable repeatedly. So if your anxiety is causing you to want to stay in bed all day, it can keep you sick. So, it becomes a problem with compensation and anxiety rather than a problem about the virus. So, after the acute phase, it isn’t about overcoming a virus, but rather getting out of your own way and clawing recovery back for yourself.

How she doing now?

Took me a couple years to recover from this. Horrible disease.