For anyone reading in similar situation or that is just starting out on this journey, I had this happen completely out the blue around 6 months ago, July 2020. The world started spinning out of nowhere when I was watching tv, it felt like I was very drunk without any of the fun, constant tinnitus, sore/ stiff neck, headaches, nausea and general vertigo. I had a CT, MRI and all clear, so expected Labyrinthitis. It took me about 4 weeks to regain my balance properly, but was easily tired out if i went out, sensory overload, but I always tried to do what I could to stay active. I had two further relapses of vertigo and balance set backs in September, not as bad, but recovery was also slower. It's now January 2021 and just last week I feel that my balance is fully restored. Before that the lingering thing was if I looked up to the sky too quickly I would fall to the right. The tinnitus remains constant, but I'm feeling much better, running 5 and 10k's, no longer any balance issues when I quickly move my head. My sleep has not been good since July, I think the tinnitus keeps my brain always active, but hopefully in time this will also improve and I will make a full recovery. It's not pleasant, but I felt getting the scan and knowing it was nothing life threatening was an important first step. It let me accept it, try to understand it more and do as much as I could without the fear of what else it could be. Stay active, eat well, exercise, get out and about and try to stay positive. Although it's frightening at first and quite tiresome and limiting at times, there are worse things that happen to many people every day, so be grateful for what you CAN do, and hopefully you will recover in time. Namaste
This video literally saved my sanity. after 13 weeks, I'm finally starting to have 'reluctant hope' that I can recover and not live in fear that this will be a part of my life forever. You are an angel! We totally need to spread positivity and beat out the threads that appear first upon google searches
I think I have Labyrinthitis and the doctor put me on Amoxxicilin. Its day 5 of me being on the antibiotic but it seems to be the same. What can I do??
You have no idea how badly I needed to see something positive about vestibular problems today. I've been so sad the last few days because everything I've watched has been from people that have not fully recovered or have been dealing with this for years. Thank you so much for making this video. I've been dealing with vestibular neuritis for 10 weeks but I wasn't diagnosed until 6 weeks in. Since starting PT, I've felt like I'm getting worse, but I'm pretty sure that's because I wasn't very active l in the beginning for fear of triggering imbalance and would take valium to calm down (which helped with the imbalance and dizzy feels but now I've learned prevents compensation), and now I am walking, running, going to the gym, playing with my niece, going to stores and malls, and doing PT exercises. Maybe I'm lucky in that my condition never caused me to fall, just made me feel really wobbly, woozy, tired and anxious. I had developed BVVP, and that has gone away after two weeks of the epley maneuver. I usually always feel like I'm on a boat, or wavering, and my head and eyes hurt from it. The last two days have been more woozy than most and that has been a huge source of frustration and makes me feel like I'm not moving forward and that doctors must lie when they say I will get better because no one I've seen on the internet has. But you have! Anyway. Thank you thank you for sharing. Fear is contagious but so is hope. I want to hold onto hope.
I have recovered and SO MANY others have as well. Most people DO recover and don't see the need to post or participate online. I felt the same way in the beginning. I will be 2 years post labs in June and I am still 100%. I know of so many who have recovered. That boat feeling will subside. VRT sounds like it's working. Hang in there. Big hugs. It's really hard, but life on the other side of this is that much sweeter.
You're not alone. Keep plugging. I so understand and also found hope in Sharon's video. Many people share negative stories and that doesn't help the kind of anxiety you're already feeling. It's work, but I'm trying very hard to stay positive, despite bad moments, bad days, and setbacks, and think of Sharon's story.
It is an utter disgrace that resources are not made available for people suffering with this.. most are just left with no decent advice or therapy options.
Thank you so much for this! I haven't received my official diagnosis yet. But im 3 weeks post covid and had a perfect MRI so I feel confident this is what I have. Ive had vertigo everyday for a week. I havent been able to drive my kids, ive had to rely on my coworkers and family more than I have ever wanted to, and I have been so, so scared that I might not get back to normal. I also love to run and I made myself run after a horrible vertigo attack and I was so glad I did. I want to push myself and get back to normal ASAP for my kids and my family. I really have no orther choice. Thank you, thank you, thank you for the hope I needed today that I can fight my way out of this.
Thank you for this. 3 and a half months into vestibular neuritis I keep plugging along. I'm glad you are better and I wish health and happiness to all here struggling. ❤
i came across your video this am and I am very inspired. I am 8 weeks in with vestibular neuritis. The vertigo has blindsided me. I am a nurse practitioner and working full time. I began Vestibular rehab a week into this event. I am impatient and want to be back to normal ASAP. Thank you for posting this and giving me hope!
It's a really awful thing to have happen to you, but as a fellow health professional, it really has given me the perspective of what it is like to be sick, dizzy, and scared. I find I am able to relate to my own patients more easily, and take the time to do little things to make them more comfortable (like grabbing an extra pillow before they lay flat). Good luck in your journey. I'm sure you will get back to yourself, and I too, was VERY impatient. I believe I told my ENT... "I'll give it two weeks, you have 2 weeks to make me myself again". HA!
Hi Sharon , I don’t have words how to say thank you to you! You are really awesome... This disease is so unpredictable, it’s like everyday is unpredictable ! U never know how you gonna feel today! I am on my 8th week and I am sooo stressed and everyday crying and prying! Your Vodeo is soo helpful who is struggling with this ! It’s like a blessings to me! Hope I will get my original self back soon! Thanks you sooo much! Bless you ❤️
Thank you for making me feel positive. I'm an avid hiker and I've been in tears the ladt few days feeling like I'll never feel normal again. I really needed this!
This is such a heart warming video. My mum has been slowly recovering from acute labyrinthitis that left her with profound hearing loss and tinnitus (waves crashing) for the past 8 months. This will give her hope that one day she can go jogging again. I am so proud of everyone battling the after effects of this devastating virus.
YES!! She will recover. It's really hard when it drags on like that. I ran another 10K tonight... that is like 40K in the past week. Eek... to recover is so so sweet. Thank you for loving her through this and helping her. We all dance with anxiety and hopelessness with this illness. She is better than she was... she may need to be reminded of that over and over again.
I am on week 6 today with vestibular neuritis and I am doing much better!! My PT said i have made a 75% improvement from my first visit. You are correct, doing the exercises helps tremendously! They are tough to do but really pay off in the end. I wanted to write in to give an added amount of hope. When others post these sad stories of hopelessness it makes it difficult to look towards a successful recovery, so I thought I would change it up a bit! Thanks again for the inspiration!
Sorry youtube didnt alert to the fact that you had commented. The exercises i do are Brandt-daroff and gaze stabilization. Try and find a decent physical therapist that specializes in dizziness. Hope that helps. Let me know if you have other questions. I will try and be useful
It is so thoughtful and generous of you to do these videos and help people who are struggling with this. More power to you Sharon, you have touched my heart.
Thank you for the new video. I have commented on your posts before and wanted to share my update. I developed sudden sensorineural hearing loss and severe vertigo in April this year. My two month anniversary was yesterday, and I am pretty much 100% from a balance standpoint - there are moments where I feel "uneasy" but these are happening less and less. My hearing improved minimally, and I use a CROS unit at work which has helped tremendously. This past weekend, for the first time since my illness, I was able to go out with friends in noisy restaurants without issue. Your videos were amongst the first ones I saw when I became ill, and I would always watch them when I felt down about my situation. I can't thank you enough for making them. I just want to echo that high dose steroids as soon as you can and VRT early and often are key. Eat well, stay hydrated, and avoid alcohol/coffee (just had coffee without issues, have yet to go back to alcohol - funny how feeling drunk for weeks on end will do that to you). Please keep posting and thanks again!
So SO SO happy to see that you are doing better!! Those uneasy feelings will lift too. I'm so proud of you for going out to a restaurant without issue. Thank you for sharing your story... many will read it and gain hope from it. Bravo!! Keep going.
Thank you!! Fear is contagious and I keep reading it tfrom some of these people posting here. I'm want to feel hopeful! It's so wonderful to see you smile and say you can do this. I've never been more terrified and I want to recover!! I hope your inspiration can help me!! Thank you for crying, smiling, reaching out, helping and Inspiring!! I hope I find my journey to be healing
Hi. I have been suffering from vestibular Neuritis for a little over 3 months now following a viral infection. My balance is way off, I feel like I am on a boat constantly, I get queezy on and off, I cry every day and have lost the ability and desire to do pretty much anything. I used to do so much and I have 2 children and one of them is under 2 years old. In the beginning I ended up in the hospital 4 times with what I thought was a stroke or heart attack because I had no idea what was wrong. Then after what seemed like I had gone to every Doctor in with in a 25 mile radius from my house I was told I had anxiety, cervical dizziness, and (my person favorite) allergies! I was spinning in circles quite literally. I finally went to the Mayo Clinic and started getting a bunch of testing done. Had the balance testing done and showed 43% damage to semicircular canals in right ear balance center. I was happy to finally have a diagnosis at least. I just started VRT a few days ago and feel awful. I was having a few good days last week but since last Monday I feel like I took 10 steps back and then started VRT and feel like I took another 5 steps back. Most days I feel sick to my stomach and severely depressed. I feel like if lost hope and cant see how I will ever recover from this. I can barely walk into the food store or any store for that matter. I feel like I am going to pass out sometimes and that is very scary. My body is in fight or flight mode constantly leaving me exhausted from the moment I wake up in the morning. I wish there was a surgery that could fix this or a pill I could take that would stop it. Not with this. Nothing to do but drag myself through every day.
April! I remember those feelings. All of them. You really need to drag yourself through recovery. No magic pill (unless you count SSRIs which do help some with the anxiety part of it... but not without side effects... and typically, with VRT and habituation, as your symptoms decrease, anxiety will decrease substantially). VRT made me feel absolutely ill in the beginning. But, for many of us, it speeds recovery. Speeds recovery. Doesn't that sound wonderful? I don't want anyone to spend any extra time with this illness. So, advice... don't lose hope. Try to change your mindset about the VRT. Maybe you feel worse because you are literally healing your brain. Think about it like this... "when I am making myself dizzy, either by movement or through visual stimulation, I am actively healing my brain and telling this illness to F off and get out of my head." You are forcing it to create new neural pathways. You are stronger than this illness. It has taken so SO much away from you and you are strong enough to get it all back. Reclaim your life. It's VERY hard and exhausting for our minds to do this. I get it. When people talk about their symptoms, it still brings me back to those early months. It was so SO relentless. Now, I'm well. So SO many go on to live completely normal lives. Good luck and keep moving. Welcome those dizzies... it's your way of telling the illness to F off. Its quite therapeutic.
I remember thinking to myself that it would be easier if they just put me in an induced coma to give my brain a break. So, I DO get it. I had lost all the joy I had in life. I was there. I was never suicidal, but many people who face this illness are. You aren't alone. It's a nightmare you don't have to go through alone. I wasn't always as positive as I am in my videos. The good vibes I felt while making the videos came AFTER I started feeling better. To say that I was relieved would be the understatement of the year. It's amazing, and I know you'll get there. It's kind of like a tipping point of sorts. Come visit us on vestibular hope. Sometimes, the FB group can be triggering (as many who are on there are in the throws of the illness, just like you), but people who have recovered are also on there like me. I just posted my own update on the page. I'd been kind of neglecting the group and got busy with life, so it was an apology of sorts.
You need b6 and all the b vitamins to a speedy recovery. Most supplements are are synthetic and !do not work! You need food grade supplements or even better just good food. Get a handful of sunflower seeds a day for b6, 2-3 spoonfuls of nutritional yeast flakes per day for the rest of the b vitamins. Oily fish like mackeral or sardines for your omega3 and saturated fat that is essentially needed by the body! Cut down on sugar avoid sweeteners as they are toxic to our system, !Cut out table salt and heavily salted foods! Use only SEA SALT or even better PINK HIMALAYAN SALT, your body needs salts and these are are loaded with trace minerals. Get yourself a B12 supplement (it must be methylcobalmin as this form of B12 is directly absorbed through the body's methylation cycle) better to have it as an oral spray so it absorbs through the glands in your mouth and gets into your blood stream, if you have acid reflux and need to take antacids then this can be a major cause of not being able to absorb nutrients properly especially b12 as the stomach acid is too low and this allows the flow of acid upwards from your stomach and this is acid reflux (a condition called GERD) take extra virgin apple cider vinegar daily to help increase your acid content and cut down on processed foods 'starchy carbs' which lower stomach acid. Juice one to two lemons per day and add to a glass of water with a quarter of a teaspoon of sodium bicarbonate for each lemon, this will fizz up and make a nice lemonade that is alkalising for your bodies pH system as citric acid from the lemons converts to alkaline through a process called the citric acid cycle (Krebs cycle) and the sodium bicarbonate is used in a process to create more hydrochloric acid in your stomach. Your body is an amazing chemical processing plant, feed it well and it will create the right environment for you to enjoy good health xx
@@SharonHen I had BPPV and have had a good deal of sinus swelling and misery after the event. The symptoms are leading to feelings much like the ones you described having. When I feel less swollen in my sinuses, the dizziness and weird moving sensations and visual disruptions dissipate. If the swelling increases, those symptoms creep right back. I have been taking some medications and doing the exercises. While the recovery in no way seems to be linear, seeing your video made me feel like I could at least hope better days in a row. I'm on week 7 which probably sounds like nothing compared to some of the timelines that folks shared. I wish you continued health and blessings for sharing your journey.
Your videos have been very inspirational. The exercises have helped me a lot. Thanks for giving us all hope suffering with this condition. I'm about 2.5 months in and about 20% better. God bless!
I still felt pretty awful at 2.5 months. Hang in there, the best is yet to come. You might be just about to turn the corner. Keep moving... every day.. and try to keep the anxiety at bay. I'm inspired by all of you going through this. The feeling is mutual.
Thank you, Sharon. Your positivity is much appreciated. I'm 6 and a half years into this nightmare. Originated as Meniere's with Vestibular Migraines. I have been really feeling hopeless lately with my symptoms persisting and also leading to other stress-related problems. This past Friday I received a new diagnosis of PPPD which gives me a whole new outlook and a feeling of control over my health, something that has been lacking all this time! When I came home from the Dr. to do some research about my future prognosis I stumbled upon your page. What a blessing! You are such an inspiration. I look forward to any updates you may want to share.
I too developed some level of PPPD after my labs/SSHL diagnosis. I felt the exact same way, empowered. Soon after, the fear of doing things left and I began to look at triggers as "projects" to be worked upon rather than something to avoid. Hang in there. 6.5 years is entirely too long
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 was having a really bad day and your videos really turned everything around. I'm 3.5 months into what I think is vestibular neuritis (I have testing and my follow up ENT appointment over the next couple weeks) and I'm 4 weeks into VRT. It has slowly been getting better, but on the bad days I have a hard time believing I will ever fully recover. But your videos gave me hope today. Thank you.
Sarah! You will get there. The vast majority of us achieve 100% or near recovery. Keep moving and try to have hope, anxiety can run you off the rails of recovery, so keep moving and keep calm. You've got this. You are going to kick VNs butt! I can feel it. You are strong :)
@@alamira.yaya8 So much better! My threshold for getting dizzy is still lower than other people, but most days I don't even think about it! I did VRT, worked on my mental health, meditated and honestly just waited. You will get better!
I subscribed to your channel a few months back after starting my VRT and it's been super helpful to me 😁 I'm so glad you are better! It also gives me hope that I can fully recover too 💕 xx
Oh Stephy.... you WILL recover.... Keep moving and keep calm... find us on FB if you ever need a chat. You will come out of this changed... but in a better way. Proud of you!!
Thank you Sharon for your video. Yesterday was my worst day and to top it off they sent me to the wrong therapist so they couldn't help me for two more weeks and I was so discouraged. This morning I found your video and a complete change for me! I'm excited to use the exercises you showed and take this thing head on! Thank you for sharing this and encouraging others that this to shall pass. Thank you!
Wow, this video is the most encouraging I've seen yet and has helped me view my labyrinthitis from a more positive perspective. I never thought of the worsening of my symptoms that often follows pushing myself "too much" as a good thing, but now I see this as an important part of the recovery process, thanks to your video. I am in my third month of this disease and am about to start VRT therapy for the first time. I am hoping VRT therapy worsens my symptoms because that means I am on the right track toward faster recovery!
Bravo for making this uplifting video of hope for us all. I have bilateral vestibular dysfunction, which I'm told is pretty rare. I have such a story to tell and am in the process of putting together a video for TH-cam that I hope will give hope to fellow sufferers. I'm sure your video has helped many people, I hope mine will too. Take care and thank you. K
Wow, took about 2 minutes to find my trigger. Moving my head from left to right induces the most wooziness. I have pretty strong head fog and some mid level vertigo for a few weeks. It comes n goes.Being active helps a lot tho. I am worse when sitting still. I think it may be connected to an upper respiratory infection I am getting over. In any case, it seems I have some degree of Labs now. Not as severe as you experienced but it was definitely affecting my quality of life. I will embark on daily therapy and see what happens. I just spent a year working on back and hip issues and now this! No rest for the wicked I suppose Thanks for the vids. They have helped me zero in on the issue quite quickly
I just came across this video today and I'm glad I did. I have had labyrinthitis for over 4 weeks now and I can relate to the part about having a great day followed by a bad day. I was improving and then seemed to relapse. I am hoping to return to work this week as soon as I can drive but at the moment a 15 minute walk is tiring me out. I could sleep all day. This is the 3rd time I have had it in 15 years and this is the worst it has been. I am looking to see if I can be referred for VRT but I had reflexology a couple of days ago and I do feel that has helped clear the head fuzz but I am still experiencing dizziness. I feel anxious about not being at work and that just gets me down. It's a horrible illness and I don't feel there is enough support for sufferers. Jus because we don't look ill doesn't mean we aren't.
It’s been a little over 2 months for me and I thought I was doing better. These past few days have been rough for me. Had to lay down for a few hours and take meclizine and even then felt fuzzy the rest of the day. Thank you for posting these videos. I feel like this is never going to get better and that I’m going to have to quit my job. I’m a helicopter mechanic for an air ambulance company and I need my balance. Seeing your videos has given me motivation and I’m trying the VRT exercises. I can only do them for a little while then I have to lay down but it gives me a goal to work towards. Thank you for giving me hope.
Sharon Hen Thank you for sharing and inspiring. Its so comforting to know others have made it through this awful virus. Ive suffered for 8 months and Id say Im 85% better. Its a very emotional devasting virus. I agree a positive attitude and pushing your limits truly does help. Good luck to all going through this. Stay strong.
Thank you so much for this video, and well done for getting so far! I have just been diagnosed with Labyrinthitis after feeling unwell and dizzy for a while, the vertigo is insane and my speech is slurring. Your video has given me hope x
Lauren Mancini I developed this august 2017 it was severe I could not walk for 2 weeks but I will say this and am happy to say it does get better I have constant tinnitus and have lost most my hearing in the right ear but my balance and dizziness has improved it took 4 months for this to get better and am still not 100 percent yet but you will get better
Bless you and thank you. I too believe in the power of a positive attitude. 8 months with daily dizziness but worse than that is the earache and full feeling in my ear. It will feel like it’s getting better then comes back, this is weekly. I’m hoping it will just go away. 🙏🙏
Unfortunately it’s not getting better…seeing consultant today and specialist early December but I remain positive that something can help with symptoms. 🙏🙏🙏
Your videos have given me more hope and I think it’s great your trying to help others now your well. I’ve recently been diagnosed with vestibular neuritis after over 4 months of been constantly dizzy and collapsing ending up in a&e which was so scary because they didn’t even know what was wrong said maybe ears but I had to leave the hospital unable to even stand by myself and this was over 2 months in. I have improved slightly since making myself move about and have just been given vt exercises but still so scared and impatient. It also doesn’t help that I have m.e and p.o.t.s but previous to this I was doing really well after pushing through years on and off with ill health. I just want to be happy again and have independence again at the moment I’m too scared to walk by myself for fear of falling or fainting but can somehow go on my bike for a bit and feel bit more steady .
Thank you so much for your video, I'm 13 weeks into this horrible thing. I had developed severe anxiety in relation to it, I am was really fit and active prior. The first 5 days was the worst vertigo ever, but since then the woozyness and lightheadedness has got to me. I walk the dog every afternoon after work and have been trying to get back into gym work, albeit very short sessions to begin with.
Thank you so much you are a blessing , I have been so depressed and lost and had a really bad day. Your words of encouragement have built me up tonight and I have your hope in me now . Can I request a video? Thank you very much for this you have to know how many people you are helping. You rock!!!
Do IT!!! You may feel strange, but trust me, you'll feel SO good over time. I literally cannot stop smiling when I run now, because I can, with no symptoms. I truly feel free of the illness, and it feels so good!
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.
Thank you so much for sharing, I am a runner and cyclist and running for me was easier than walking. I would have to stop running to give my brain a rest. I never stopped running just cut back. I have noticed running on the treadmill that I am not as dizzy. Thanks again for sharing as this really puts one into a really dark place. This give hopes. BTW I found Matrix Repatterining has helped reduce the symptoms slightly and improve my balance. thank you!
Hi sharon its really very inspiring video and my son is 17 years old and he is suffering from this labyrinthitis but he has recovered a lot after three and half months and now he is at two third hearing back and now doctor has asked him to use hearing aid in right ear so I just want to know that you are using hearing aid or not .thanks
Thank you for this inspirational video. I've only had vertigo for a couple of weeks but it's been a challenge to overcome the anxiety that comes with it. I saw a doctor briefly, who told me I was fine and it'll probably go away, it was very unsatisfying to walk out still not know what is going on in my body. I've been researching and I think it may be vestibular neuritis that's causing it. I will seek out a specialist soon to try and get a confirmation, but despite the cause I think your message is right on. Thank you for sharing.
Good luck James! You'll get there. Sorry the Dr's seem so dismissive. I feel like if they could live a day in our shoes, it might be a different story. When I meet someone with vertigo... of any type... my first response is I'm so so so sorry you are going through this, I know what it is like. I've met so many people face to face with this illness, and it's always a deep connection. It might not be a common condition, but once you've been through it, you never forget that feeling.
I suffer from labyrinthitis but it's not 24 hours a day and it was before, and sometimes in like 3 4 months it happen again but for like couple hours... it's weird and the worst is that i vomit a lot.... anyway happy to hear that you're better.
I know I'm a year late to this video and I commented on one of your other videos but, after watching all of your videos I feel like your advice is brilliant! I've had either labs or vn for 2 weeks today but, I've had no spinning, no pain, no hearing loss. Just a LOT of nausea, no appetite, and a lot of head fuzz. The head fuzz is worse when I stand up so I'm in bed a lot. I know I need to get up and get active but it's scary! How did you find the motivation to get out of bed and how long did it take? I feel like my symptoms could be on the milder end of the condition and I'm grateful for that, but is it likely that I could still get the more severe symptoms or will I be in recovery from here on in?
5 weeks without an attack can’t help feeling there is one round the corner but so far so good I have been on holiday on a plane had a bit of discomfort with the altitude but whilst on holiday had no attacks since then it’s been great Sleeping with one pillow and doing the dot on the wall exercise focusing on the dot and the movement that goes with it Had a head and neck massage and chiropractor manipulated spine and neck bones this may have been pressing on nerves and causing the dizziness it worked for me and I understand it might not work for everyone but the chiropractor thing might be it
Glad you feel validated. You aren't alone. I was VERY lucky in that I had excellent doctors, who knew me outside of this illness (I'm in healthcare), who genuinely knew something was up, and tried everything they could to figure this out with me. So many get fluffed off with anti-anxiety meds. Just keep looking for someone who understands. The Dr's are out there. People on our FB support groups might be able to recommend a good Dr in your area. Good luck in your recovery. You aren't crazy, it isn't in your head, it's in your inner ear.
Sharon Hen well I was told that mine is vestibular neuronitis. I did not suffer any hearing loss. I am past the acute state. Now it’s just fatigue, florescent lights or flickering lights, and sometimes ceiling fans give me trouble. Also large stores . I just feel I have to much info at a time to processes and my mind does not know where to start. Eyes start to hurt and I feel twitching behind eyes and nose at times. I’m usually a snappy thinker so the confused and slow processing is the main downside for me. On the flip side it could be worse I was able to drive and work with in a week but I still have uncomfortable circumstances each day. I’m taking your advice and pushing ahead. Wife and kids need me! Thanks for your videos it helped me a bunch. I have always been the rock in my family so it’s hard for them to understand the true just of what I’m dealing with 24/7
100% correct! It's conflicting signals. It will get easier and easier... push ahead, but rest when needed as well. Expose yourself to the things that make you dizzy, like shops, and know that the mind fog will lift. It's hard, but you'll get there. You've come so far already. Expect bad days... don't let setbacks take you down. You will have days where you feel worse. Do not be surprised by that. It's all part of getting over this thing. Good luck!!!
August 2017 woke up balance had gone, was throwing up felt dizzy and had tinnitus was diagnosed with vestibular labryintitus and wow what a journey it's been had MRI scans and hearing test lost most my hearing in my right ear and still have tinnitus have been told the hearing probably won't come back but like you the balance and dizziness has greatly improved I am just fed up of the tinnitus it has gone quieter than when it started 6 months on just pray one day it goes I do have worse days particularly if I eat certain bad foods so I have certainly changed my eating habits since this x
Denver hi Denver I am sorry you are dealing with this awful Viral infection I do unfortunately still have ringing in my right ear constant since August 2017 some days are better than others I would maybe start a diary for a few weeks and write what you eat and how you felt that day try to eliminate anything that is going to make it worse I also hope and pray this tinitus one day goes I have a nodule in my neck which also came on around the time of August and I am getting it removed by surgery in 2 weeks along with my right thyroid to be on the same side all this bevause of a viral infection just eat as clean as you can meditate relax do anything that will help it get better and hopefully one day we both won't have tinitus xx
To add to this my balance has masifly improved I only feel off balance during the time of my period my tinitus also gets worse around period my dizziness has gone now so at the moment I am dealing with hearing loss tinitus and only around my period I feel off balance slightly
Hi Sharon I just want to firstly say THANK YOU! You have really helped me in a dark dark time. I have had VN since 27th March of this year 2021 and after around 10 weeks I was seeing a big improvement following your advice. However.... I had a very slight nystagmus and residual dizziness left for most days like rocking on a boat/swaying. I went to my Physio last week for VRT and they performed the Epley Manoeuvre on me. Well I felt off straight after and each day I got more 'off' and 'dizzy' then I awoke with very violent vertigo on day 4 (4 days ago) where I was vomiting/room spinning etc and am feeling almost back to square one and so down and deflated. Have you any words of advice? I wondered if I'd developed BPPV from the Epley and am too terrified to go back to physio. I'm hoping in time after some rest it will all resolve again once I get back to my VRT. Thank you, I hope you are well.
I'm so sorry. I get it. I had BPPV on top of my vestibular stuff. I too became almost phobic about doing the maneuvers and to this DAY... there is one bed in the physio I went to that I just don't go in. So, your feelings and emotions are normal. It is quite a thing to suffer violent vertigo. The important thing to note is that doing the maneuvers can only right crystals that are out in the semicircular canals. It can't give you BPPV. That said, it can shake up what's already loose. I had what they described as "sticky" crystals that were adherent to the walls (they suspect). The good news is that you will likely settle down in time with or without the maneuvers. Be mindful of neck stiffness too. Sometimes, after such an attack, we can almost decompensate because we are scared to move our neck naturally. If you can, I suggest getting an anti-nausant like zofran (more heavy duty than gravol) and giving physio another go if you are still sick. If not, often, the little buggers/crystals will just right themselves if they are in the posterior/lateral canals from normal movements in sleep. It's better to get it over with the physio, but if you can't go... you can't go. wait until you are ready.
It is quite a journey. If you don't mind, you can post your questions here publicly as they may help other people reading this thread. There is always someone online in our FB group Vestibular Hope if you prefer to ask there.
I still have this now and it will be 5 months in July 19. This feels beyond worse than being miserable . I am a realtor and am tearful hearing your story as I have been managing to do my job somehow. The daily head pressure is the worst one. I am feeling 85 % recovered with the off balance and dizziness . Did you have the head pressure and ears popping and crackling too?
popping, clicking, and crackling. Yes. I remember searching to find someone who also had it. I've come to find others that have it as well. It will ease with time. Make sure to explore any jaw issues you may have developed from the stress of having a vestibular disorder. Nothing expensive or hard to do, just keep the jaw relaxed at all times, make sure your teeth aren't touching unless you are eating, reduce stress in your life, suck on mints rather than chewing gum, warm compress along the jaw line and a dab of peppermint oil behind the ear (not in), can help relieve the feeling of pressure. You'll get there. The last bit is slower because it's harder to trigger the symptoms we NEED to experience and expose our brain to in order to heal, so become a detective, and if any head movements, positions, or environments bother you, gradually and calmly expose your brain to MORE of those. Good luck. As always, I'm not a doctor, so I can only relay what helped me and others that I've interacted with over the past 6 years.
@@SharonHen Hi Sharon , I am sure you are getting a lot of people asking about your experience related to this, I would like to thank you for your time and and sharing your experience and information that helped you . This shows that you are very kind and caring and want to help people sharing your experience for those who are going through this . It started with head pressure, lightheadedness, off balance, swaying, floating, rocking motion, wobbly legs types of symptoms. Now I realize that the reason I feel almost better of most symptoms is due to challenging my myself as doing my normal activities since the onset of this condition. I had ear infection that developed to labyrinthitis, I was put on antibiotics, the infection was cleared but the symptoms were persistent for 4 months as it was viral. I was seen by PCP and put me on allergy medication that seems to help the clogged ears and earwax buildup. In my case, I felt 100 percent recovered in 6 weeks and all of suddenly it came back to stage 1, I was very hopeless thinking that this will come and go and yes it came and went for times . Anxiety and panic attacks were through the roof from time to time that were worse in the first month of symptoms. It made me feel depressed for days and tired on the legs and whole body , it was very weird and funny feeling. My trigger now is with high temperatures and humidity. If this head pressure would go away, I would feel 95 % recovered . Sharon , was it head pressure for you too as the last one to dissipate towards 100% recovery? Running, walking, plank exercises, push ups , enough rest and sleep and staying hydrated seem to expedite my recovery.
@@longhorns4u head pressure is something that I do deal with still from time to time, although it isn't nearly as bad and doesn't cause me any panic or vestibular issue. So I guess that would be my last symptom. That, and the hearing loss. People without vestibular issues often have trouble with barometric changes. I am certain that your return to life and your perseverance have helped you almost completely recover. I was the same way. Distracting the mind is key. Knowing that symptoms do not mean damage is key. Knowing that the vast majority who are able to overcome the anxiety of what we have gone through (not easy, its awful) do recover also helps.
@@SharonHenHi Sharon, I am glad that I don't have any hearing issue as of until now. Thank you for your response. I hope someone reads these experiences and find that they are not alone on this.
@@longhorns4u hi how are you Just checking in on your progress? Did you fully recover Did your bouncy sensations go away? I’m on month 5 but still have some bouncy sensations when walking or after driving, scrolling on computer
Hi Sharon thanks for all your videos ! They are of great help ! I have a question did you have unfocused vision where your vision is not blurry but u can't seem to focus on things ? My vision is weird and scattered maybe because I think my eyes aren't focussing on the right place! It's hard to explain what is it. Did u have anything of that sort?
Absolutely. I couldn't even focus on an entire television screen for months. I'd watch just one corner of the screen. I also felt like I'd let my eyes just relax a lot and not focus on anything. Your eyes are working very hard to compensate for your vestibular damage. I also felt very unfocussed and was unable to scroll through a phone for a long time. Vision Stabilization exercises will hopefully help with that, as will time.
@@SharonHen Hi Sharon thanks for replying to my query. I am like 6 months in right now. I am doing vrt for 3 months now. My anxiety has gone down a lot, the boat feeling i just feel sometimes( it has improved), dizziness has gotten better, i dont feel nauseated any more.I didnt have any head pressure when it all started , but after i started vrt i get head pressure quiet often and it stays there for days. Did u have recurring head pressure feeling? Also my world feels so surreal . Though i have read your replies to others that this surreal feeling will go away. i hope it lifts for me too. Regards :-)
thanks for sharing your experience. I'm having one of those bad days and your video is lifting me up again. I've been diagnosed with vestibular neuritis. I don't feel dizzy after 3-4 weeks but I feel my vision is blurry. I'm stock in this stage and don't feel any improvement for the last 2-3 weeks. Did it happen to you? Did you feel blurry vision after the severe dizzy symptoms?
I had extreme brain fog and had trouble focussing on things. I'd be watching tv and find that I couldn't look at the screen any longer. Likely visual overstimulation more than an actual vision problem for me. It eventually went away completely. There is a lot of talk in the FB support group on this topic, as a few have said they need prism glasses. I didn't suffer many visual symptoms, so it might be better to make a post on the support group page and see what other's say helped them. Good luck in your journey. Looks like you are getting better.
Hi I really feel fed up my doctors keep giving me tablets nothing works . I have has enough I keep getting this balance disorder, I feel scared walking, I can't run like I was mentally it's horrible, I have had it for three weeks now but it comes and goes i have been given new medication and told if it hasn't gone in three days to go back to the doctors, but I feel they don't know what's wrong with me 😢
three weeks is still pretty early in the timeline of vestibular issues. For me, week three was really hard, because "google" had told me I should be better by now. It feels relentless, but it should ease so long as you keep moving, and keep anxiety in check (practically impossible I know). Having a proper diagnosis is challenging, because the vestibular system is a bit of a mystery to the medical world. The good news is that most of them are treated in the same way... keep moving, keep calm, do VRT, get rest/fluids, and give it time. Good luck in your recovery, you WILL get there.
Sharon Hen I have got an appointment in audiology in December that's the only time they could fit me in i have found a medication that's helping a little but it's making me tired but I will continue to take it as I honestly can't cope with not being able to do much as I am pretty active. I have also been doing some exercises i was told to do to try and balance the crystals in my inner ear. I just feel scared and hoping I'm confident enough to walk alone without my daughter linking me x
What did you do about your hearing loss? Did you try the steroid injections? Other forms of treatments? I ended up in the ER on 7/16 with uncontrollable vertigo and hearing loss in my left ear. I drive for my job, which I love, but am devastated to think I have to quit because right now, even though I can drive short distances, I don't think I can work a full shift. Thank you for your videos and encouragements.
prednisone, 50mg daily for one week. My ENT, who was pretty up front, offered to do the injections, but said he felt there was little proven positive outcome and obvious side effects, so we didn't do them. It took me a bit of time and practice to get used to driving. Hang out in your driveway and practice shoulder checks until they don't make you dizzy, almost like VRT. Start slow and safe, and if possible, with the ok from a physiotherapist or Dr. I have no issues with driving now. Most have trouble just like you and i in the beginning. You'll get there
Yes, and it took so long to ease. It was seven months before my ear would even pop and from time to time I still get fullness with rainy weather, but no dizziness.
for many, it does :/ Most. You just don't see them in the support groups and online because they don't need the extra support. Sorry that you, like myself, are dealing with this longer than normal. It isn't easy, but it is overcomable.
My labyrinthitis started 3 months ago. I've made a lot of progress with Vestibular Rehabilitation Therapy on my own, but I'm left with symptoms that are extremely uncomfortable and terrifying. I often feel like my world is surreal. Everything looks normal, but sometimes it feels like it isn't real. I'm constantly fatigued, brain and body. I have continuing pressure and tingling between my eyes and up through my forehead and also i feel pressure in upper neck . I often feel like my brain is on the verge of shutting off on me, which is probably the scariest residual symptom. I feel like I have no control over my brain. It feels weak and unruly. Did you experiencing this???
yes. Fortunately and unfortunately, these symptoms are quite common amongst sufferers. Take comfort in that. You still have lots of room for improvement. Try not to let the anxiety overcome you. It will NOT be like this forever. The brain "zaps" and surreal feeling were some of my worst symptoms as well. I feel firmly in reality now. Keep going. Keep moving. Keep exposing yourself to things that make you dizzy. I know it's exhausting. I do. You might be right around the corner from a big step forward. I made a great improvement right around 3 months, then again at 4 and then again at 6 months. The worst for you is hopefully over.
depends on what your diagnosis is. If it's like mine (labyrinthitis) or similar to mine (VN/hypofunction) then you must move and do so without anxiety. Repetitive movements and exposures to busy environments will condition the brain over time and resolve your symptoms. If you have something else, like VM, you'll need some help getting your migraines under control. If you have Menieres, you'll need medical consult to look at diet and possibly water pill. If you have PPPD, you'll need to tackle the anxiety. Good luck. No reason to plateau. Commit to your recovery and get better. Two years is too long.
First, thank you so much for sharing this as there are so many of us suffering from this with no help from ENT's. I've seen the best of the best and always find that I'm more informed about the specifics of my problem than they are. I've insisted for years that it was vestibular neuritis only to be told no way. I even found an article from a medical journal about the possibility of the herpes virus becoming active and attaching to the vestibular nerve thus causing inflammation and creating an "extreme episode". Anyone that has ever even had a cold sore has this possibility, and what a coincidence that the virus hides in the back of the neck when dormant. Since you also mentioned TMJ, I wanted to add something to your tool box. I'm not sure if you've ever heard of Dr. John Sarno. His work on psycho-physiologic illness has helped countless thousands. It's called tension myositis syndrome (TMS) and is based on the unconscious mind creating pain or discomfort by attacking the nervous system to create a diversion from things the mind doesn't want you thinking about. That's a very basic explanation but an easy introduction can be found here www.tmswiki.org/ppd/An_Introduction_to_Tension_Myositis_Syndrome_(TMS) Please understand, in no way am I disputing what we all have or your spectacular results. I truly believe you'll find that these things go hand in hand as far as understanding the illness and permanent recovery go. Here is a link to a great forum thread specifically about this topic concerning labrynthitis www.tmshelp.com/forum/topic.asp?TOPIC_ID=8397 Again, thank you so much for your encouraging posts and guides to recovery. I'll be starting my VRT immediately!
How long have you been dealing with this? Often, it’s scarring of the eustachian tubes or ETD. I had this. It took me 7 months for my ear pressure to ease. I used steroid nasal spray daily that I tried to direct into my Eustachian tubes. Ask a pharmacist. Otherwise, sometimes a very hot compress along my jaw would help. Also be mindful of clenching your jaw. Many of us begin to clench due to stress of other symptoms... like being dizzy. If you find you are, might be worth trying to give up chewing gum for a bit to see if it helps. It’s annoying, and can be chronic, but will ease with time.
Hello, what test did the doctors ask you to do to confirm that you have labyrinthitis? Or it is just based on your symptoms. I have dizziness/vertigo/unbalance on off for 6 years now, but i can't find a doctor who can pinpoint the cause of it. I had mri, ctscan thank God they are negative. But i do not want this to be with my life for so long and it should not be.
They based my diagnosis on my symptoms. It is possible to have uncompensated labyrinthitis for years and still recover. You have to do the things that make you dizzy, over and over again, until they no longer make you dizzy. I would say that generally, people with other disorders, like Vestibular Migraine, and Menieres, have food triggers like high salt, wine, caffeine (including chocolate) that tends to make their symptoms worse. These other disorders are treated with diet changes, and medication. For those of us with labs/VN, generally not as severe, if any food triggers. If your symptoms are constant, again, likely a labs/VN thing. I'm making generalizations, but I hope it helps. Generally, the treatment for any of the "itis" is time, VRT (vestibular rehabilitation therapy with a physio), and control of anxiety (many use anti-anxiety and anti-depression meds with great success) while others, like me, are able to rationalize their way through the anxiety and pull themselves out of the cycle. Hang in there, keep moving and keep calm. Have hope.
thank you! I will take into consideration the anxiety and stress. I am not eating salty food as well as per my doctor. I am happy to see you well and healthy! God bless!
well... right now I'm awaiting my covid result, my grandfather passed away, and I've been quite sick. I am feeling better than yesterday. Vestibular wise I've been fine, even with the stress of working in a busy hospital literally touching patients all day during a global pandemic. So, fine vestibular wise, but stressed and on high alert in many other ways. I think it's a good litmus test for my vestibular disorder. If possibly having covid and attending a funeral of someone I was very close with doesn't make me dizzy with worry, probably nothing will.
I did and I still do. It has lessened in it's intensity, volume, and pitch, since onset nearly two years ago, but has never gone away. To be honest, I don't even notice it much anymore, until I think about it. It isn't bothersome.
Hi Sharon, several months ago I contacted you on another video. I was struck with vestibular neuritis early March. I started vestibular therapy on April 2nd. 5 weeks ago I went back to work as a full-time Nanny. I am still doing vestibular therapy. I am trying to challenge myself and definitely still struggling. I still have trouble sleeping. Its impossible on my bad side, and I can on the other side but often I have to take Benadryl to calm down the rocking sensation. It just turned 4 months. I feel like I have come far and then plateaued. Do you think this is normal? I am not having the spinning attacks, but definitely constantly have the ligtheadedness and dizziness still. I joined the Facebook group and 2 months ago I closed my Facebook . As you were recovering, were you able to ever sleep on the bad side? My therapist has me practice laying on the bad side.....its one exercise that really is not improving. I have that extreme rocking sensation on my bad side. I actually feel much better moving than laying down and sitting up. I am making progress on the gaze stability, but doing my exercise still. Some positions are definitely worse than others, but when they did all the tests I didn't have BPPV. I am off all the steroids now and about a week ago they had me stop Flonase. I do take Claritin daily. Do you still have any dizziness? I am so glad you made a fullrecovery.
Hi Ashlie. This illness has left it's scars on me, but vestibular wise, I am fully compensated and living a completely normal and rewarding life. Being a full-time Nanny with a vestibular disorder would be extremely tough. Great work getting back to your demanding job. Plateaus are normal and to be expected. I had trigger movements and positions. Laying flat and damaged ear down were two. For me, anything that triggered a worsening of symptoms, would cause my mind to get the better of me and I'd become VERY anxious when I'd attempt my trigger positions. So, I had trigger movements, but I also had trigger environments. For instance, returning to yoga, laying on the mat in the room of people made things start to sway. Laying flat in bed didn't seem to bother me. It took a VERY long time for me to overcome the fear of laying flat on my yoga mat. I knew, obviously, that it was situational anxiety causing symptoms rather than the actual position. I could lay flat in bed, but not on my mat. Your mind will be on high alert now though, and that cycle of anxiety, hypersensitivity, and worsening of symptoms is challenging to break. Repetition is a good thing. Knowing that you can literally worry yourself dizzy is another thing that you might want to keep in your mind. I did it at yoga. They say the best thing is to allow the symptoms to wash over you with indifference. This seems basically impossible. ha! That said, the more you do them, the less you fear them, the quicker you'll overcome. I do have recurrent BPPV, so I don't know if I will ever sleep on my right side for an entire night. Rolling around in bed doesn't seem to bother me, but an entire night on my right side just isn't worth the risk.
Sharon Hen thznk you. Have you seen anyone have slight regressions during the recovery? I thought I had plateaued and the VRT told me today I have hit a regression. I was so dizzy today. More than just the normal dizziness. I am not sure if regression is normal in recovery? I am so thankful for the full recovery you made. Your videos are so encouraging.
Just seeing this now Lauren. I hope, when you think back to making this post, that you can see just how far you’ve come. Sending hugs and support your way, always.
I am about 3.5-4 months into what I think is labyrinthitis. Still not formally diagnosed but it's an extremely slow recovery. I am planning on going to Japan for work and would like to hear from anyone if they experienced any worsening symptoms when they flew. This will be my first flight since my initial vertigo attack and is an extremely long flight so am a little reluctant. Any precautions that can be shared will be great. Thanks for the videos. Will be doing some of these exercises to hopefully quicken recovery
Hi Shawn. I made six flights in a three week period and did great! As far as I know, most of us do just fine and have a huge weight lifted off our shoulders after the first flight is under our belts. I went to the arctic circle a few weeks ago and will be flying to the Canadian North again in a few weeks. Ear Planes worked great! available on amazon, but they also typically sell these types of earplugs at the airport and even drug stores. Good luck with your flight.!!! It will go great!
the worst part of it is the anxiety of that first take off. Once you make it above the clouds, you will feel a weight lifted when you know you can make it!! It was such a relief. My physio suggested I take a sinus med an hour before my first flight... I think claritin. Just to keep those eustachian tubes open. I didn't bother with my other five flights and they all went fine. For flying, I think it's the take off and landing that can bother our inner ears rather than the length of time in the sky, so you're good :)
May I ask why you are crying in the video because I don't understand English I only understand through writing if you would write me why you are crying because that also takes me emotionally because I had also experienced the disease and I was so bad too in a good moodwell man then i cried too i know that very well but i wanted to know why you cried here in particular if you would write to me i would be very happy😔
I still have vivid memories of the lows or darkness of the illness. I think it may be valuable for me to carry them through my recovery and the rest of my life. I overcame so much. I rose from a very dark place of suffering. It will always serve to remind me how strong I am.
@@SharonHen yes I can not understand how strong you were, I hope I will stay that strong and I'll go through it all.Do you also take your vitamin D vitamins so I always take my vitamin D capsules and I was always a lot of checks, neurologist, MRI, orthopedics and you have to have so much checked everything checked.what I wanted to ask how long ago was the illness so how many years has it passed that you are really healthy, that you feel really good
@@SharonHen it took you four years so it's a year now for me and I still have to keep my balance so easily and somehow that it's also on the left side of the head na the brain stem or always feels a bit strange to me don't know it was the same with youstrange feeling
For anyone reading in similar situation or that is just starting out on this journey, I had this happen completely out the blue around 6 months ago, July 2020. The world started spinning out of nowhere when I was watching tv, it felt like I was very drunk without any of the fun, constant tinnitus, sore/ stiff neck, headaches, nausea and general vertigo. I had a CT, MRI and all clear, so expected Labyrinthitis. It took me about 4 weeks to regain my balance properly, but was easily tired out if i went out, sensory overload, but I always tried to do what I could to stay active. I had two further relapses of vertigo and balance set backs in September, not as bad, but recovery was also slower. It's now January 2021 and just last week I feel that my balance is fully restored. Before that the lingering thing was if I looked up to the sky too quickly I would fall to the right. The tinnitus remains constant, but I'm feeling much better, running 5 and 10k's, no longer any balance issues when I quickly move my head. My sleep has not been good since July, I think the tinnitus keeps my brain always active, but hopefully in time this will also improve and I will make a full recovery. It's not pleasant, but I felt getting the scan and knowing it was nothing life threatening was an important first step. It let me accept it, try to understand it more and do as much as I could without the fear of what else it could be. Stay active, eat well, exercise, get out and about and try to stay positive. Although it's frightening at first and quite tiresome and limiting at times, there are worse things that happen to many people every day, so be grateful for what you CAN do, and hopefully you will recover in time. Namaste
Thank you, this made me feel better. I have same thing as u . Got vertigo attack twice. But its been 3 months. Everyday feels like dizzy n offbalance.
This video literally saved my sanity. after 13 weeks, I'm finally starting to have 'reluctant hope' that I can recover and not live in fear that this will be a part of my life forever. You are an angel! We totally need to spread positivity and beat out the threads that appear first upon google searches
YES!!!! Hope is so important to rid yourself of the anxiety that comes with a vestibular illness. Thank you for your kind comment.
How are you doing now
@@SharonHen any update on you now?
@@tiffanyarambula3023 I'll provide an update today (I'm off work... yay!!!)
I think I have Labyrinthitis and the doctor put me on Amoxxicilin. Its day 5 of me being on the antibiotic but it seems to be the same. What can I do??
You have no idea how badly I needed to see something positive about vestibular problems today. I've been so sad the last few days because everything I've watched has been from people that have not fully recovered or have been dealing with this for years. Thank you so much for making this video. I've been dealing with vestibular neuritis for 10 weeks but I wasn't diagnosed until 6 weeks in. Since starting PT, I've felt like I'm getting worse, but I'm pretty sure that's because I wasn't very active l in the beginning for fear of triggering imbalance and would take valium to calm down (which helped with the imbalance and dizzy feels but now I've learned prevents compensation), and now I am walking, running, going to the gym, playing with my niece, going to stores and malls, and doing PT exercises. Maybe I'm lucky in that my condition never caused me to fall, just made me feel really wobbly, woozy, tired and anxious. I had developed BVVP, and that has gone away after two weeks of the epley maneuver. I usually always feel like I'm on a boat, or wavering, and my head and eyes hurt from it. The last two days have been more woozy than most and that has been a huge source of frustration and makes me feel like I'm not moving forward and that doctors must lie when they say I will get better because no one I've seen on the internet has. But you have! Anyway. Thank you thank you for sharing. Fear is contagious but so is hope. I want to hold onto hope.
I have recovered and SO MANY others have as well. Most people DO recover and don't see the need to post or participate online. I felt the same way in the beginning. I will be 2 years post labs in June and I am still 100%. I know of so many who have recovered. That boat feeling will subside. VRT sounds like it's working. Hang in there. Big hugs. It's really hard, but life on the other side of this is that much sweeter.
You're not alone. Keep plugging. I so understand and also found hope in Sharon's video. Many people share negative stories and that doesn't help the kind of anxiety you're already feeling. It's work, but I'm trying very hard to stay positive, despite bad moments, bad days, and setbacks, and think of Sharon's story.
Hi. Lindsey...Did urs recover? I am dealing with same thing as you since last 3 months. I am so scared
It is an utter disgrace that resources are not made available for people suffering with this.. most are just left with no decent advice or therapy options.
Thank you so much for this! I haven't received my official diagnosis yet. But im 3 weeks post covid and had a perfect MRI so I feel confident this is what I have. Ive had vertigo everyday for a week. I havent been able to drive my kids, ive had to rely on my coworkers and family more than I have ever wanted to, and I have been so, so scared that I might not get back to normal. I also love to run and I made myself run after a horrible vertigo attack and I was so glad I did. I want to push myself and get back to normal ASAP for my kids and my family. I really have no orther choice. Thank you, thank you, thank you for the hope I needed today that I can fight my way out of this.
Thank you for this. 3 and a half months into vestibular neuritis I keep plugging along. I'm glad you are better and I wish health and happiness to all here struggling. ❤
i came across your video this am and I am very inspired. I am 8 weeks in with vestibular neuritis. The vertigo has blindsided me. I am a nurse practitioner and working full time. I began Vestibular rehab a week into this event. I am impatient and want to be back to normal ASAP. Thank you for posting this and giving me hope!
It's a really awful thing to have happen to you, but as a fellow health professional, it really has given me the perspective of what it is like to be sick, dizzy, and scared. I find I am able to relate to my own patients more easily, and take the time to do little things to make them more comfortable (like grabbing an extra pillow before they lay flat). Good luck in your journey. I'm sure you will get back to yourself, and I too, was VERY impatient. I believe I told my ENT... "I'll give it two weeks, you have 2 weeks to make me myself again". HA!
Hi Sharon , I don’t have words how to say thank you to you! You are really awesome... This disease is so unpredictable, it’s like everyday is unpredictable ! U never know how you gonna feel today! I am on my 8th week and I am sooo stressed and everyday crying and prying! Your Vodeo is soo helpful who is struggling with this ! It’s like a blessings to me! Hope I will get my original self back soon! Thanks you sooo much! Bless you ❤️
Thank you for making me feel positive. I'm an avid hiker and I've been in tears the ladt few days feeling like I'll never feel normal again. I really needed this!
How r u now?
This is such a heart warming video. My mum has been slowly recovering from acute labyrinthitis that left her with profound hearing loss and tinnitus (waves crashing) for the past 8 months. This will give her hope that one day she can go jogging again. I am so proud of everyone battling the after effects of this devastating virus.
YES!! She will recover. It's really hard when it drags on like that. I ran another 10K tonight... that is like 40K in the past week. Eek... to recover is so so sweet. Thank you for loving her through this and helping her. We all dance with anxiety and hopelessness with this illness. She is better than she was... she may need to be reminded of that over and over again.
I am on week 6 today with vestibular neuritis and I am doing much better!! My PT said i have made a 75% improvement from my first visit. You are correct, doing the exercises helps tremendously! They are tough to do but really pay off in the end. I wanted to write in to give an added amount of hope. When others post these sad stories of hopelessness it makes it difficult to look towards a successful recovery, so I thought I would change it up a bit! Thanks again for the inspiration!
what are the exercises.. my Doctor is useless
Sorry youtube didnt alert to the fact that you had commented. The exercises i do are Brandt-daroff and gaze stabilization. Try and find a decent physical therapist that specializes in dizziness. Hope that helps. Let me know if you have other questions. I will try and be useful
It is so thoughtful and generous of you to do these videos and help people who are struggling with this. More power to you Sharon, you have touched my heart.
Thank you for the new video. I have commented on your posts before and wanted to share my update. I developed sudden sensorineural hearing loss and severe vertigo in April this year. My two month anniversary was yesterday, and I am pretty much 100% from a balance standpoint - there are moments where I feel "uneasy" but these are happening less and less. My hearing improved minimally, and I use a CROS unit at work which has helped tremendously. This past weekend, for the first time since my illness, I was able to go out with friends in noisy restaurants without issue. Your videos were amongst the first ones I saw when I became ill, and I would always watch them when I felt down about my situation. I can't thank you enough for making them. I just want to echo that high dose steroids as soon as you can and VRT early and often are key. Eat well, stay hydrated, and avoid alcohol/coffee (just had coffee without issues, have yet to go back to alcohol - funny how feeling drunk for weeks on end will do that to you). Please keep posting and thanks again!
So SO SO happy to see that you are doing better!! Those uneasy feelings will lift too. I'm so proud of you for going out to a restaurant without issue. Thank you for sharing your story... many will read it and gain hope from it. Bravo!! Keep going.
Thank you!! Fear is contagious and I keep reading it tfrom some of these people posting here. I'm want to feel hopeful! It's so wonderful to see you smile and say you can do this. I've never been more terrified and I want to recover!! I hope your inspiration can help me!! Thank you for crying, smiling, reaching out, helping and Inspiring!! I hope I find my journey to be healing
Hi. I have been suffering from vestibular Neuritis for a little over 3 months now following a viral infection. My balance is way off, I feel like I am on a boat constantly, I get queezy on and off, I cry every day and have lost the ability and desire to do pretty much anything. I used to do so much and I have 2 children and one of them is under 2 years old. In the beginning I ended up in the hospital 4 times with what I thought was a stroke or heart attack because I had no idea what was wrong. Then after what seemed like I had gone to every Doctor in with in a 25 mile radius from my house I was told I had anxiety, cervical dizziness, and (my person favorite) allergies! I was spinning in circles quite literally. I finally went to the Mayo Clinic and started getting a bunch of testing done. Had the balance testing done and showed 43% damage to semicircular canals in right ear balance center. I was happy to finally have a diagnosis at least. I just started VRT a few days ago and feel awful. I was having a few good days last week but since last Monday I feel like I took 10 steps back and then started VRT and feel like I took another 5 steps back. Most days I feel sick to my stomach and severely depressed. I feel like if lost hope and cant see how I will ever recover from this. I can barely walk into the food store or any store for that matter. I feel like I am going to pass out sometimes and that is very scary. My body is in fight or flight mode constantly leaving me exhausted from the moment I wake up in the morning. I wish there was a surgery that could fix this or a pill I could take that would stop it. Not with this. Nothing to do but drag myself through every day.
April! I remember those feelings. All of them. You really need to drag yourself through recovery. No magic pill (unless you count SSRIs which do help some with the anxiety part of it... but not without side effects... and typically, with VRT and habituation, as your symptoms decrease, anxiety will decrease substantially). VRT made me feel absolutely ill in the beginning. But, for many of us, it speeds recovery. Speeds recovery. Doesn't that sound wonderful? I don't want anyone to spend any extra time with this illness. So, advice... don't lose hope. Try to change your mindset about the VRT. Maybe you feel worse because you are literally healing your brain. Think about it like this... "when I am making myself dizzy, either by movement or through visual stimulation, I am actively healing my brain and telling this illness to F off and get out of my head." You are forcing it to create new neural pathways. You are stronger than this illness. It has taken so SO much away from you and you are strong enough to get it all back. Reclaim your life. It's VERY hard and exhausting for our minds to do this. I get it. When people talk about their symptoms, it still brings me back to those early months. It was so SO relentless. Now, I'm well. So SO many go on to live completely normal lives. Good luck and keep moving. Welcome those dizzies... it's your way of telling the illness to F off. Its quite therapeutic.
I remember thinking to myself that it would be easier if they just put me in an induced coma to give my brain a break. So, I DO get it. I had lost all the joy I had in life. I was there. I was never suicidal, but many people who face this illness are. You aren't alone. It's a nightmare you don't have to go through alone. I wasn't always as positive as I am in my videos. The good vibes I felt while making the videos came AFTER I started feeling better. To say that I was relieved would be the understatement of the year. It's amazing, and I know you'll get there. It's kind of like a tipping point of sorts. Come visit us on vestibular hope. Sometimes, the FB group can be triggering (as many who are on there are in the throws of the illness, just like you), but people who have recovered are also on there like me. I just posted my own update on the page. I'd been kind of neglecting the group and got busy with life, so it was an apology of sorts.
Hi April, I was wondering how you are feeling?
Sharon Hen thank you for your hope. I am suffering but taking hope from your words
You need b6 and all the b vitamins to a speedy recovery. Most supplements are are synthetic and !do not work! You need food grade supplements or even better just good food. Get a handful of sunflower seeds a day for b6, 2-3 spoonfuls of nutritional yeast flakes per day for the rest of the b vitamins. Oily fish like mackeral or sardines for your omega3 and saturated fat that is essentially needed by the body! Cut down on sugar avoid sweeteners as they are toxic to our system, !Cut out table salt and heavily salted foods! Use only SEA SALT or even better PINK HIMALAYAN SALT, your body needs salts and these are are loaded with trace minerals.
Get yourself a B12 supplement (it must be methylcobalmin as this form of B12 is directly absorbed through the body's methylation cycle) better to have it as an oral spray so it absorbs through the glands in your mouth and gets into your blood stream, if you have acid reflux and need to take antacids then this can be a major cause of not being able to absorb nutrients properly especially b12 as the stomach acid is too low and this allows the flow of acid upwards from your stomach and this is acid reflux (a condition called GERD) take extra virgin apple cider vinegar daily to help increase your acid content and cut down on processed foods 'starchy carbs' which lower stomach acid. Juice one to two lemons per day and add to a glass of water with a quarter of a teaspoon of sodium bicarbonate for each lemon, this will fizz up and make a nice lemonade that is alkalising for your bodies pH system as citric acid from the lemons converts to alkaline through a process called the citric acid cycle (Krebs cycle) and the sodium bicarbonate is used in a process to create more hydrochloric acid in your stomach. Your body is an amazing chemical processing plant, feed it well and it will create the right environment for you to enjoy good health xx
Thank you for making your hope contagious.
Makes me smile to think this might be true. Thanks Clara. I'm still doing well (despite a muscular work related injury... no vertigo).
@@SharonHen I had BPPV and have had a good deal of sinus swelling and misery after the event. The symptoms are leading to feelings much like the ones you described having. When I feel less swollen in my sinuses, the dizziness and weird moving sensations and visual disruptions dissipate. If the swelling increases, those symptoms creep right back. I have been taking some medications and doing the exercises. While the recovery in no way seems to be linear, seeing your video made me feel like I could at least hope better days in a row. I'm on week 7 which probably sounds like nothing compared to some of the timelines that folks shared. I wish you continued health and blessings for sharing your journey.
Your videos have been very inspirational. The exercises have helped me a lot. Thanks for giving us all hope suffering with this condition. I'm about 2.5 months in and about 20% better. God bless!
I still felt pretty awful at 2.5 months. Hang in there, the best is yet to come. You might be just about to turn the corner. Keep moving... every day.. and try to keep the anxiety at bay. I'm inspired by all of you going through this. The feeling is mutual.
Thank you, Sharon. Your positivity is much appreciated. I'm 6 and a half years into this nightmare. Originated as Meniere's with Vestibular Migraines. I have been really feeling hopeless lately with my symptoms persisting and also leading to other stress-related problems. This past Friday I received a new diagnosis of PPPD which gives me a whole new outlook and a feeling of control over my health, something that has been lacking all this time! When I came home from the Dr. to do some research about my future prognosis I stumbled upon your page. What a blessing! You are such an inspiration. I look forward to any updates you may want to share.
I too developed some level of PPPD after my labs/SSHL diagnosis. I felt the exact same way, empowered. Soon after, the fear of doing things left and I began to look at triggers as "projects" to be worked upon rather than something to avoid. Hang in there. 6.5 years is entirely too long
Thank you for your post you give me so much hope that I will be able to run again. I am going to challenge myself every single day.
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 was having a really bad day and your videos really turned everything around. I'm 3.5 months into what I think is vestibular neuritis (I have testing and my follow up ENT appointment over the next couple weeks) and I'm 4 weeks into VRT. It has slowly been getting better, but on the bad days I have a hard time believing I will ever fully recover. But your videos gave me hope today. Thank you.
Sarah! You will get there. The vast majority of us achieve 100% or near recovery. Keep moving and try to have hope, anxiety can run you off the rails of recovery, so keep moving and keep calm. You've got this. You are going to kick VNs butt! I can feel it. You are strong :)
How are you doing now?
Cause iam also 4 month into vestibular neuritis
And i really need some advice to how i can recover from this illness
@@alamira.yaya8 So much better! My threshold for getting dizzy is still lower than other people, but most days I don't even think about it! I did VRT, worked on my mental health, meditated and honestly just waited. You will get better!
your video really help me a lot... im 95% better now... thank you so much
How long did it take you to recover and get over the symptoms
@@mistyrodriguez2476 almost 3 months.. until now... Back to normal now
I subscribed to your channel a few months back after starting my VRT and it's been super helpful to me 😁 I'm so glad you are better! It also gives me hope that I can fully recover too 💕 xx
Oh Stephy.... you WILL recover.... Keep moving and keep calm... find us on FB if you ever need a chat. You will come out of this changed... but in a better way. Proud of you!!
Thank you Sharon for your video. Yesterday was my worst day and to top it off they sent me to the wrong therapist so they couldn't help me for two more weeks and I was so discouraged. This morning I found your video and a complete change for me! I'm excited to use the exercises you showed and take this thing head on! Thank you for sharing this and encouraging others that this to shall pass. Thank you!
It shall pass. I hope you are well on your way to recovery.
Wow, this video is the most encouraging I've seen yet and has helped me view my labyrinthitis from a more positive perspective. I never thought of the worsening of my symptoms that often follows pushing myself "too much" as a good thing, but now I see this as an important part of the recovery process, thanks to your video. I am in my third month of this disease and am about to start VRT therapy for the first time. I am hoping VRT therapy worsens my symptoms because that means I am on the right track toward faster recovery!
Yes!!! I think your rehab therapist will be impressed if you go in and present this mindset. Getting better is hard... but worth it. Good luck!
How do feel now?
Thank you, Sharon! You are a beacon of hope for me and for many many people!! XO I hope you continue to enjoy 100% for always!
Bravo for making this uplifting video of hope for us all. I have bilateral vestibular dysfunction, which I'm told is pretty rare. I have such a story to tell and am in the process of putting together a video for TH-cam that I hope will give hope to fellow sufferers. I'm sure your video has helped many people, I hope mine will too. Take care and thank you. K
Wow, took about 2 minutes to find my trigger. Moving my head from left to right induces the most wooziness. I have pretty strong head fog and some mid level vertigo for a few weeks. It comes n goes.Being active helps a lot tho. I am worse when sitting still. I think it may be connected to an upper respiratory infection I am getting over. In any case, it seems I have some degree of Labs now. Not as severe as you experienced but it was definitely affecting my quality of life. I will embark on daily therapy and see what happens. I just spent a year working on back and hip issues and now this!
No rest for the wicked I suppose
Thanks for the vids. They have helped me zero in on the issue quite quickly
I just came across this video today and I'm glad I did. I have had labyrinthitis for over 4 weeks now and I can relate to the part about having a great day followed by a bad day. I was improving and then seemed to relapse. I am hoping to return to work this week as soon as I can drive but at the moment a 15 minute walk is tiring me out. I could sleep all day. This is the 3rd time I have had it in 15 years and this is the worst it has been. I am looking to see if I can be referred for VRT but I had reflexology a couple of days ago and I do feel that has helped clear the head fuzz but I am still experiencing dizziness. I feel anxious about not being at work and that just gets me down. It's a horrible illness and I don't feel there is enough support for sufferers. Jus because we don't look ill doesn't mean we aren't.
It’s been a little over 2 months for me and I thought I was doing better. These past few days have been rough for me. Had to lay down for a few hours and take meclizine and even then felt fuzzy the rest of the day. Thank you for posting these videos. I feel like this is never going to get better and that I’m going to have to quit my job. I’m a helicopter mechanic for an air ambulance company and I need my balance. Seeing your videos has given me motivation and I’m trying the VRT exercises. I can only do them for a little while then I have to lay down but it gives me a goal to work towards. Thank you for giving me hope.
John. Sorry for the late response. I hope that you have progressed in these last 4 months. Keep going.
Thank you Sharon....i wish i could give you a big hug..you have given me immense hope that i will get through this.
I feel that hug Heena!!! Hugging you right back.
Sharon Hen
Thank you for sharing and inspiring. Its so comforting to know others have made it through this awful virus. Ive suffered for 8 months and Id say Im 85% better. Its a very emotional devasting virus. I agree a positive attitude and pushing your limits truly does help. Good luck to all going through this. Stay strong.
@@beckyadcock9283how are you doing now?
Thank you so much for this video, and well done for getting so far! I have just been diagnosed with Labyrinthitis after feeling unwell and dizzy for a while, the vertigo is insane and my speech is slurring. Your video has given me hope x
Lauren Mancini I developed this august 2017 it was severe I could not walk for 2 weeks but I will say this and am happy to say it does get better I have constant tinnitus and have lost most my hearing in the right ear but my balance and dizziness has improved it took 4 months for this to get better and am still not 100 percent yet but you will get better
Thank you Danielle x
God bless you. I just found your video... Trying to find answers you know... And you just gave hope that I can get better. Thank you!!!
Good luck in your journey to wellness. Keep moving. Have hope.
I needed this. Thank you 💕
:)
Thank you for this video
Bless you and thank you. I too believe in the power of a positive attitude. 8 months with daily dizziness but worse than that is the earache and full feeling in my ear. It will feel like it’s getting better then comes back, this is weekly. I’m hoping it will just go away. 🙏🙏
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. 🙏🙏🙏
Your videos have given me more hope and I think it’s great your trying to help others now your well. I’ve recently been diagnosed with vestibular neuritis after over 4 months of been constantly dizzy and collapsing ending up in a&e which was so scary because they didn’t even know what was wrong said maybe ears but I had to leave the hospital unable to even stand by myself and this was over 2 months in. I have improved slightly since making myself move about and have just been given vt exercises but still so scared and impatient. It also doesn’t help that I have m.e and p.o.t.s but previous to this I was doing really well after pushing through years on and off with ill health. I just want to be happy again and have independence again at the moment I’m too scared to walk by myself for fear of falling or fainting but can somehow go on my bike for a bit and feel bit more steady .
How are you doing now?
@@alamira.yaya8 much better how ru?
Thank you so much for your video, I'm 13 weeks into this horrible thing. I had developed severe anxiety in relation to it, I am was really fit and active prior. The first 5 days was the worst vertigo ever, but since then the woozyness and lightheadedness has got to me. I walk the dog every afternoon after work and have been trying to get back into gym work, albeit very short sessions to begin with.
Thank you so much you are a blessing , I have been so depressed and lost and had a really bad day. Your words of encouragement have built me up tonight and I have your hope in me now . Can I request a video? Thank you very much for this you have to know how many people you are helping. You rock!!!
How r u now?i too feel depressed..crying all the time
Great to hear your story. I'm psyching myself up to run again and this is a big boost.
Do IT!!! You may feel strange, but trust me, you'll feel SO good over time. I literally cannot stop smiling when I run now, because I can, with no symptoms. I truly feel free of the illness, and it feels so good!
Five K is far. That made me lol. Congratulations on your healing. Thank you for sharing your journey.
the first 5K is the hardest. No matter how far my runs are even to this day, the first 5 are the hardest
Thank you for making this video. Still dealing with this terrifying experience.
Love your videos they are so positive, thanks so much for making them.
Thank you for this! Im 5 weeks in and really struggling to see the light at the end of the tunnel! ❤
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! ❤️❤️❤️❤️🙏🙏🙏
Thank you so much for sharing, I am a runner and cyclist and running for me was easier than walking. I would have to stop running to give my brain a rest. I never stopped running just cut back. I have noticed running on the treadmill that I am not as dizzy. Thanks again for sharing as this really puts one into a really dark place. This give hopes. BTW I found Matrix Repatterining has helped reduce the symptoms slightly and improve my balance. thank you!
Once a runner, always a runnwr
than you for this. Gave me some hope
Hi sharon its really very inspiring video and my son is 17 years old and he is suffering from this labyrinthitis but he has recovered a lot after three and half months and now he is at two third hearing back and now doctor has asked him to use hearing aid in right ear so I just want to know that you are using hearing aid or not .thanks
Sharon Hen, have you dealt with blurry vision? Are there any exercises for vision? God bless you and thank you for me these videos.
Thank you for this inspirational video. I've only had vertigo for a couple of weeks but it's been a challenge to overcome the anxiety that comes with it. I saw a doctor briefly, who told me I was fine and it'll probably go away, it was very unsatisfying to walk out still not know what is going on in my body. I've been researching and I think it may be vestibular neuritis that's causing it. I will seek out a specialist soon to try and get a confirmation, but despite the cause I think your message is right on. Thank you for sharing.
Good luck James! You'll get there. Sorry the Dr's seem so dismissive. I feel like if they could live a day in our shoes, it might be a different story. When I meet someone with vertigo... of any type... my first response is I'm so so so sorry you are going through this, I know what it is like. I've met so many people face to face with this illness, and it's always a deep connection. It might not be a common condition, but once you've been through it, you never forget that feeling.
Love these!
I suffer from labyrinthitis but it's not 24 hours a day and it was before, and sometimes in like 3 4 months it happen again but for like couple hours... it's weird and the worst is that i vomit a lot.... anyway happy to hear that you're better.
I know I'm a year late to this video and I commented on one of your other videos but, after watching all of your videos I feel like your advice is brilliant! I've had either labs or vn for 2 weeks today but, I've had no spinning, no pain, no hearing loss. Just a LOT of nausea, no appetite, and a lot of head fuzz. The head fuzz is worse when I stand up so I'm in bed a lot. I know I need to get up and get active but it's scary! How did you find the motivation to get out of bed and how long did it take? I feel like my symptoms could be on the milder end of the condition and I'm grateful for that, but is it likely that I could still get the more severe symptoms or will I be in recovery from here on in?
How is your recovery going? Im two weeks into this nasty feeling.
5 weeks without an attack can’t help feeling there is one round the corner but so far so good
I have been on holiday on a plane had a bit of discomfort with the altitude but whilst on holiday had no attacks since then it’s been great
Sleeping with one pillow and doing the dot on the wall exercise focusing on the dot and the movement that goes with it
Had a head and neck massage and chiropractor manipulated spine and neck bones this may have been pressing on nerves and causing the dizziness it worked for me and I understand it might not work for everyone but the chiropractor thing might be it
How are you feeling now?
I am 85% okay now. 15% more! Goodluck to all of us.
How are you doing now
@@nituyadav4678 im back to normal now. 🙂
@@carljames571 thank u for your reply
How long did it take?
Thank you very much,I could write a book from this experience
Finally someone who has felt what I felt. I'm so tired of people acting like I make up things and tell me I just have anxiety. It's a horrible feeling
Glad you feel validated. You aren't alone. I was VERY lucky in that I had excellent doctors, who knew me outside of this illness (I'm in healthcare), who genuinely knew something was up, and tried everything they could to figure this out with me. So many get fluffed off with anti-anxiety meds. Just keep looking for someone who understands. The Dr's are out there. People on our FB support groups might be able to recommend a good Dr in your area. Good luck in your recovery. You aren't crazy, it isn't in your head, it's in your inner ear.
Sharon Hen well I was told that mine is vestibular neuronitis. I did not suffer any hearing loss. I am past the acute state. Now it’s just fatigue, florescent lights or flickering lights, and sometimes ceiling fans give me trouble. Also large stores . I just feel I have to much info at a time to processes and my mind does not know where to start. Eyes start to hurt and I feel twitching behind eyes and nose at times. I’m usually a snappy thinker so the confused and slow processing is the main downside for me. On the flip side it could be worse I was able to drive and work with in a week but I still have uncomfortable circumstances each day. I’m taking your advice and pushing ahead. Wife and kids need me! Thanks for your videos it helped me a bunch. I have always been the rock in my family so it’s hard for them to understand the true just of what I’m dealing with 24/7
100% correct! It's conflicting signals. It will get easier and easier... push ahead, but rest when needed as well. Expose yourself to the things that make you dizzy, like shops, and know that the mind fog will lift. It's hard, but you'll get there. You've come so far already. Expect bad days... don't let setbacks take you down. You will have days where you feel worse. Do not be surprised by that. It's all part of getting over this thing. Good luck!!!
August 2017 woke up balance had gone, was throwing up felt dizzy and had tinnitus was diagnosed with vestibular labryintitus and wow what a journey it's been had MRI scans and hearing test lost most my hearing in my right ear and still have tinnitus have been told the hearing probably won't come back but like you the balance and dizziness has greatly improved I am just fed up of the tinnitus it has gone quieter than when it started 6 months on just pray one day it goes I do have worse days particularly if I eat certain bad foods so I have certainly changed my eating habits since this x
Denver hi Denver I am sorry you are dealing with this awful
Viral infection I do unfortunately still have ringing in my right ear constant since August 2017 some days are better than others I would maybe start a diary for a few weeks and write what you eat and how you felt that day try to eliminate anything that is going to make it worse I also hope and pray this tinitus one day goes I have a nodule in my neck which also came on around the time of August and I am getting it removed by surgery in 2 weeks along with my right thyroid to be on the same side all this bevause of a viral infection just eat as clean as you can meditate relax do anything that will help it get better and hopefully one day we both won't have tinitus xx
To add to this my balance has masifly improved I only feel off balance during the time of my period my tinitus also gets worse around period my dizziness has gone now so at the moment I am dealing with hearing loss tinitus and only around my period I feel off balance slightly
Update on tinnitus?
Hi Sharon I just want to firstly say THANK YOU! You have really helped me in a dark dark time. I have had VN since 27th March of this year 2021 and after around 10 weeks I was seeing a big improvement following your advice.
However.... I had a very slight nystagmus and residual dizziness left for most days like rocking on a boat/swaying. I went to my Physio last week for VRT and they performed the Epley Manoeuvre on me. Well I felt off straight after and each day I got more 'off' and 'dizzy' then I awoke with very violent vertigo on day 4 (4 days ago) where I was vomiting/room spinning etc and am feeling almost back to square one and so down and deflated. Have you any words of advice? I wondered if I'd developed BPPV from the Epley and am too terrified to go back to physio. I'm hoping in time after some rest it will all resolve again once I get back to my VRT. Thank you, I hope you are well.
I'm so sorry. I get it. I had BPPV on top of my vestibular stuff. I too became almost phobic about doing the maneuvers and to this DAY... there is one bed in the physio I went to that I just don't go in. So, your feelings and emotions are normal. It is quite a thing to suffer violent vertigo. The important thing to note is that doing the maneuvers can only right crystals that are out in the semicircular canals. It can't give you BPPV. That said, it can shake up what's already loose. I had what they described as "sticky" crystals that were adherent to the walls (they suspect). The good news is that you will likely settle down in time with or without the maneuvers. Be mindful of neck stiffness too. Sometimes, after such an attack, we can almost decompensate because we are scared to move our neck naturally. If you can, I suggest getting an anti-nausant like zofran (more heavy duty than gravol) and giving physio another go if you are still sick. If not, often, the little buggers/crystals will just right themselves if they are in the posterior/lateral canals from normal movements in sleep. It's better to get it over with the physio, but if you can't go... you can't go. wait until you are ready.
God bless you.💖
Hi Sharon. Thank you for the video. I was diagnosed a year ago . And it has been along road. I have some questions from you
It is quite a journey. If you don't mind, you can post your questions here publicly as they may help other people reading this thread. There is always someone online in our FB group Vestibular Hope if you prefer to ask there.
I love you!!!
I still have this now and it will be 5 months in July 19. This feels beyond worse than being miserable . I am a realtor and am tearful hearing your story as I have been managing to do my job somehow. The daily head pressure is the worst one. I am feeling 85 % recovered with the off balance and dizziness . Did you have the head pressure and ears popping and crackling too?
popping, clicking, and crackling. Yes. I remember searching to find someone who also had it. I've come to find others that have it as well. It will ease with time. Make sure to explore any jaw issues you may have developed from the stress of having a vestibular disorder. Nothing expensive or hard to do, just keep the jaw relaxed at all times, make sure your teeth aren't touching unless you are eating, reduce stress in your life, suck on mints rather than chewing gum, warm compress along the jaw line and a dab of peppermint oil behind the ear (not in), can help relieve the feeling of pressure. You'll get there. The last bit is slower because it's harder to trigger the symptoms we NEED to experience and expose our brain to in order to heal, so become a detective, and if any head movements, positions, or environments bother you, gradually and calmly expose your brain to MORE of those. Good luck. As always, I'm not a doctor, so I can only relay what helped me and others that I've interacted with over the past 6 years.
@@SharonHen Hi Sharon ,
I am sure you are getting a lot of people asking about your experience related to this, I would like to thank you for your time and and sharing your experience and information that helped you . This shows that you are very kind and caring and want to help people sharing your experience for those who are going through this . It started with head pressure, lightheadedness, off balance, swaying, floating, rocking motion, wobbly legs types of symptoms. Now I realize that the reason I feel almost better of most symptoms is due to challenging my myself as doing my normal activities since the onset of this condition. I had ear infection that developed to labyrinthitis, I was put on antibiotics, the infection was cleared but the symptoms were persistent for 4 months as it was viral. I was seen by PCP and put me on allergy medication that seems to help the clogged ears and earwax buildup. In my case, I felt 100 percent recovered in 6 weeks and all of suddenly it came back to stage 1, I was very hopeless thinking that this will come and go and yes it came and went for times . Anxiety and panic attacks were through the roof from time to time that were worse in the first month of symptoms. It made me feel depressed for days and tired on the legs and whole body , it was very weird and funny feeling. My trigger now is with high temperatures and humidity. If this head pressure would go away, I would feel 95 % recovered . Sharon , was it head pressure for you too as the last one to dissipate towards 100% recovery? Running, walking, plank exercises, push ups , enough rest and sleep and staying hydrated seem to expedite my recovery.
@@longhorns4u head pressure is something that I do deal with still from time to time, although it isn't nearly as bad and doesn't cause me any panic or vestibular issue. So I guess that would be my last symptom. That, and the hearing loss. People without vestibular issues often have trouble with barometric changes. I am certain that your return to life and your perseverance have helped you almost completely recover. I was the same way. Distracting the mind is key. Knowing that symptoms do not mean damage is key. Knowing that the vast majority who are able to overcome the anxiety of what we have gone through (not easy, its awful) do recover also helps.
@@SharonHenHi Sharon, I am glad that I don't have any hearing issue as of until now. Thank you for your response. I hope someone reads these experiences and find that they are not alone on this.
@@longhorns4u hi how are you
Just checking in on your progress? Did you fully recover
Did your bouncy sensations go away?
I’m on month 5 but still have some bouncy sensations when walking or after driving, scrolling on computer
5 Months down today - i try to leave my house but never last more than 15 minutes and get dizzy -
Hi Sharon thanks for all your videos ! They are of great help !
I have a question did you have unfocused vision where your vision is not blurry but u can't seem to focus on things ? My vision is weird and scattered maybe because I think my eyes aren't focussing on the right place! It's hard to explain what is it. Did u have anything of that sort?
Absolutely. I couldn't even focus on an entire television screen for months. I'd watch just one corner of the screen. I also felt like I'd let my eyes just relax a lot and not focus on anything. Your eyes are working very hard to compensate for your vestibular damage. I also felt very unfocussed and was unable to scroll through a phone for a long time. Vision Stabilization exercises will hopefully help with that, as will time.
@@SharonHen Hi Sharon thanks for replying to my query. I am like 6 months in right now. I am doing vrt for 3 months now. My anxiety has gone down a lot, the boat feeling i just feel sometimes( it has improved), dizziness has gotten better, i dont feel nauseated any more.I didnt have any head pressure when it all started , but after i started vrt i get head pressure quiet often and it stays there for days. Did u have recurring head pressure feeling? Also my world feels so surreal . Though i have read your replies to others that this surreal feeling will go away. i hope it lifts for me too.
Regards :-)
It lifts for the vast majority of people. You'll be feeling PART of this world again before you know it.@@raajje1
Raajje did you get fully compensated?
thanks for sharing your experience. I'm having one of those bad days and your video is lifting me up again. I've been diagnosed with vestibular neuritis. I don't feel dizzy after 3-4 weeks but I feel my vision is blurry. I'm stock in this stage and don't feel any improvement for the last 2-3 weeks. Did it happen to you? Did you feel blurry vision after the severe dizzy symptoms?
I had extreme brain fog and had trouble focussing on things. I'd be watching tv and find that I couldn't look at the screen any longer. Likely visual overstimulation more than an actual vision problem for me. It eventually went away completely. There is a lot of talk in the FB support group on this topic, as a few have said they need prism glasses. I didn't suffer many visual symptoms, so it might be better to make a post on the support group page and see what other's say helped them. Good luck in your journey. Looks like you are getting better.
Thanks Sharon!! you re really helpful :)
Hi I really feel fed up my doctors keep giving me tablets nothing works . I have has enough I keep getting this balance disorder, I feel scared walking, I can't run like I was mentally it's horrible, I have had it for three weeks now but it comes and goes i have been given new medication and told if it hasn't gone in three days to go back to the doctors, but I feel they don't know what's wrong with me 😢
three weeks is still pretty early in the timeline of vestibular issues. For me, week three was really hard, because "google" had told me I should be better by now. It feels relentless, but it should ease so long as you keep moving, and keep anxiety in check (practically impossible I know). Having a proper diagnosis is challenging, because the vestibular system is a bit of a mystery to the medical world. The good news is that most of them are treated in the same way... keep moving, keep calm, do VRT, get rest/fluids, and give it time. Good luck in your recovery, you WILL get there.
Sharon Hen I have got an appointment in audiology in December that's the only time they could fit me in i have found a medication that's helping a little but it's making me tired but I will continue to take it as I honestly can't cope with not being able to do much as I am pretty active. I have also been doing some exercises i was told to do to try and balance the crystals in my inner ear. I just feel scared and hoping I'm confident enough to walk alone without my daughter linking me x
What did you do about your hearing loss? Did you try the steroid injections? Other forms of treatments? I ended up in the ER on 7/16 with uncontrollable vertigo and hearing loss in my left ear. I drive for my job, which I love, but am devastated to think I have to quit because right now, even though I can drive short distances, I don't think I can work a full shift. Thank you for your videos and encouragements.
prednisone, 50mg daily for one week. My ENT, who was pretty up front, offered to do the injections, but said he felt there was little proven positive outcome and obvious side effects, so we didn't do them. It took me a bit of time and practice to get used to driving. Hang out in your driveway and practice shoulder checks until they don't make you dizzy, almost like VRT. Start slow and safe, and if possible, with the ok from a physiotherapist or Dr. I have no issues with driving now. Most have trouble just like you and i in the beginning. You'll get there
Sharon Hen did you get stuffiness or fullness in your ear?
Yes, and it took so long to ease. It was seven months before my ear would even pop and from time to time I still get fullness with rainy weather, but no dizziness.
And doctors tell you “it will go away in a few weeks” lol. It’s laughable but tragic they dismiss us so quickly
for many, it does :/ Most. You just don't see them in the support groups and online because they don't need the extra support. Sorry that you, like myself, are dealing with this longer than normal. It isn't easy, but it is overcomable.
Sharon Hen do you still have labyrinthitis?
My labyrinthitis started 3 months ago. I've made a lot of progress with Vestibular Rehabilitation Therapy on my own, but I'm left with symptoms that are extremely uncomfortable and terrifying. I often feel like my world is surreal. Everything looks normal, but sometimes it feels like it isn't real. I'm constantly fatigued, brain and body. I have continuing pressure and tingling between my eyes and up through my forehead and also i feel pressure in upper neck . I often feel like my brain is on the verge of shutting off on me, which is probably the scariest residual symptom. I feel like I have no control over my brain. It feels weak and unruly. Did you experiencing this???
yes. Fortunately and unfortunately, these symptoms are quite common amongst sufferers. Take comfort in that. You still have lots of room for improvement. Try not to let the anxiety overcome you. It will NOT be like this forever. The brain "zaps" and surreal feeling were some of my worst symptoms as well. I feel firmly in reality now. Keep going. Keep moving. Keep exposing yourself to things that make you dizzy. I know it's exhausting. I do. You might be right around the corner from a big step forward. I made a great improvement right around 3 months, then again at 4 and then again at 6 months. The worst for you is hopefully over.
reem chokor how are you feeling now?
✝💗💗💗💗
Why do I still have it 2 years on?:(
depends on what your diagnosis is. If it's like mine (labyrinthitis) or similar to mine (VN/hypofunction) then you must move and do so without anxiety. Repetitive movements and exposures to busy environments will condition the brain over time and resolve your symptoms. If you have something else, like VM, you'll need some help getting your migraines under control. If you have Menieres, you'll need medical consult to look at diet and possibly water pill. If you have PPPD, you'll need to tackle the anxiety. Good luck. No reason to plateau. Commit to your recovery and get better. Two years is too long.
First, thank you so much for sharing this as there are so many of us suffering from this with no help from ENT's. I've seen the best of the best and always find that I'm more informed about the specifics of my problem than they are. I've insisted for years that it was vestibular neuritis only to be told no way. I even found an article from a medical journal about the possibility of the herpes virus becoming active and attaching to the vestibular nerve thus causing inflammation and creating an "extreme episode". Anyone that has ever even had a cold sore has this possibility, and what a coincidence that the virus hides in the back of the neck when dormant. Since you also mentioned TMJ, I wanted to add something to your tool box. I'm not sure if you've ever heard of Dr. John Sarno. His work on psycho-physiologic illness has helped countless thousands. It's called tension myositis syndrome (TMS) and is based on the unconscious mind creating pain or discomfort by attacking the nervous system to create a diversion from things the mind doesn't want you thinking about. That's a very basic explanation but an easy introduction can be found here www.tmswiki.org/ppd/An_Introduction_to_Tension_Myositis_Syndrome_(TMS)
Please understand, in no way am I disputing what we all have or your spectacular results. I truly believe you'll find that these things go hand in hand as far as understanding the illness and permanent recovery go. Here is a link to a great forum thread specifically about this topic concerning labrynthitis www.tmshelp.com/forum/topic.asp?TOPIC_ID=8397
Again, thank you so much for your encouraging posts and guides to recovery. I'll be starting my VRT immediately!
Unfortunately I’m still dealing with the sensation of clogged ears. What the heck can one do about this? Any ideas?
How long have you been dealing with this? Often, it’s scarring of the eustachian tubes or ETD. I had this. It took me 7 months for my ear pressure to ease. I used steroid nasal spray daily that I tried to direct into my Eustachian tubes. Ask a pharmacist. Otherwise, sometimes a very hot compress along my jaw would help. Also be mindful of clenching your jaw. Many of us begin to clench due to stress of other symptoms... like being dizzy. If you find you are, might be worth trying to give up chewing gum for a bit to see if it helps. It’s annoying, and can be chronic, but will ease with time.
How is your tinnitus now? This is my worst symptom for me now.
Settled into the background of my life after about 8 months
Hello, what test did the doctors ask you to do to confirm that you have labyrinthitis? Or it is just based on your symptoms.
I have dizziness/vertigo/unbalance on off for 6 years now, but i can't find a doctor who can pinpoint the cause of it. I had mri, ctscan thank God they are negative. But i do not want this to be with my life for so long and it should not be.
They based my diagnosis on my symptoms. It is possible to have uncompensated labyrinthitis for years and still recover. You have to do the things that make you dizzy, over and over again, until they no longer make you dizzy. I would say that generally, people with other disorders, like Vestibular Migraine, and Menieres, have food triggers like high salt, wine, caffeine (including chocolate) that tends to make their symptoms worse. These other disorders are treated with diet changes, and medication. For those of us with labs/VN, generally not as severe, if any food triggers. If your symptoms are constant, again, likely a labs/VN thing. I'm making generalizations, but I hope it helps. Generally, the treatment for any of the "itis" is time, VRT (vestibular rehabilitation therapy with a physio), and control of anxiety (many use anti-anxiety and anti-depression meds with great success) while others, like me, are able to rationalize their way through the anxiety and pull themselves out of the cycle. Hang in there, keep moving and keep calm. Have hope.
thank you! I will take into consideration the anxiety and stress. I am not eating salty food as well as per my doctor. I am happy to see you well and healthy! God bless!
How are you now??? Please reply
well... right now I'm awaiting my covid result, my grandfather passed away, and I've been quite sick. I am feeling better than yesterday. Vestibular wise I've been fine, even with the stress of working in a busy hospital literally touching patients all day during a global pandemic. So, fine vestibular wise, but stressed and on high alert in many other ways. I think it's a good litmus test for my vestibular disorder. If possibly having covid and attending a funeral of someone I was very close with doesn't make me dizzy with worry, probably nothing will.
Hi Sharon, did you have ringing in your ear and if it went away?
I did and I still do. It has lessened in it's intensity, volume, and pitch, since onset nearly two years ago, but has never gone away. To be honest, I don't even notice it much anymore, until I think about it. It isn't bothersome.
Are you able to do another video of new VRT exercises and may be new tips and updates?
Sharon Hen how long did it tacke that your tinnitus reduced ?
Did your tinnitus go away?
Hi Sharon, several months ago I contacted you on another video. I was struck with vestibular neuritis early March. I started vestibular therapy on April 2nd. 5 weeks ago I went back to work as a full-time Nanny. I am still doing vestibular therapy. I am trying to challenge myself and definitely still struggling. I still have trouble sleeping. Its impossible on my bad side, and I can on the other side but often I have to take Benadryl to calm down the rocking sensation. It just turned 4 months. I feel like I have come far and then plateaued. Do you think this is normal? I am not having the spinning attacks, but definitely constantly have the ligtheadedness and dizziness still. I joined the Facebook group and 2 months ago I closed my Facebook . As you were recovering, were you able to ever sleep on the bad side? My therapist has me practice laying on the bad side.....its one exercise that really is not improving. I have that extreme rocking sensation on my bad side. I actually feel much better moving than laying down and sitting up. I am making progress on the gaze stability, but doing my exercise still. Some positions are definitely worse than others, but when they did all the tests I didn't have BPPV. I am off all the steroids now and about a week ago they had me stop Flonase. I do take Claritin daily. Do you still have any dizziness? I am so glad you made a fullrecovery.
Hi Ashlie. This illness has left it's scars on me, but vestibular wise, I am fully compensated and living a completely normal and rewarding life. Being a full-time Nanny with a vestibular disorder would be extremely tough. Great work getting back to your demanding job. Plateaus are normal and to be expected. I had trigger movements and positions. Laying flat and damaged ear down were two. For me, anything that triggered a worsening of symptoms, would cause my mind to get the better of me and I'd become VERY anxious when I'd attempt my trigger positions. So, I had trigger movements, but I also had trigger environments. For instance, returning to yoga, laying on the mat in the room of people made things start to sway. Laying flat in bed didn't seem to bother me. It took a VERY long time for me to overcome the fear of laying flat on my yoga mat. I knew, obviously, that it was situational anxiety causing symptoms rather than the actual position. I could lay flat in bed, but not on my mat. Your mind will be on high alert now though, and that cycle of anxiety, hypersensitivity, and worsening of symptoms is challenging to break. Repetition is a good thing. Knowing that you can literally worry yourself dizzy is another thing that you might want to keep in your mind. I did it at yoga. They say the best thing is to allow the symptoms to wash over you with indifference. This seems basically impossible. ha! That said, the more you do them, the less you fear them, the quicker you'll overcome. I do have recurrent BPPV, so I don't know if I will ever sleep on my right side for an entire night. Rolling around in bed doesn't seem to bother me, but an entire night on my right side just isn't worth the risk.
Sharon Hen thznk you. Have you seen anyone have slight regressions during the recovery? I thought I had plateaued and the VRT told me today I have hit a regression. I was so dizzy today. More than just the normal dizziness. I am not sure if regression is normal in recovery? I am so thankful for the full recovery you made. Your videos are so encouraging.
How has your recovery been? And are you taking anything or doing any excercise that help.
Did Sydney Crosby recover ? ..........
YES!!! He is an east coast Canadian boy!! I couldn't help but mention it considering we grew up pretty close to each other.
Sharon Hen , That's Awesome
Hi could u help me please
Just seeing this now Lauren. I hope, when you think back to making this post, that you can see just how far you’ve come. Sending hugs and support your way, always.
I am about 3.5-4 months into what I think is labyrinthitis. Still not formally diagnosed but it's an extremely slow recovery. I am planning on going to Japan for work and would like to hear from anyone if they experienced any worsening symptoms when they flew. This will be my first flight since my initial vertigo attack and is an extremely long flight so am a little reluctant. Any precautions that can be shared will be great. Thanks for the videos. Will be doing some of these exercises to hopefully quicken recovery
Hi Shawn. I made six flights in a three week period and did great! As far as I know, most of us do just fine and have a huge weight lifted off our shoulders after the first flight is under our belts. I went to the arctic circle a few weeks ago and will be flying to the Canadian North again in a few weeks. Ear Planes worked great! available on amazon, but they also typically sell these types of earplugs at the airport and even drug stores. Good luck with your flight.!!! It will go great!
Sharon Hen thanks. My wife did pick up earplanes for me
the worst part of it is the anxiety of that first take off. Once you make it above the clouds, you will feel a weight lifted when you know you can make it!! It was such a relief. My physio suggested I take a sinus med an hour before my first flight... I think claritin. Just to keep those eustachian tubes open. I didn't bother with my other five flights and they all went fine. For flying, I think it's the take off and landing that can bother our inner ears rather than the length of time in the sky, so you're good :)
Sharon Hen thanks for your feedback (and posts). Having this makes you truly appreciate good days as you know what a bad day is like. Thanks again!!
I have done another 7 flights in the past two weeks. All went great!
May I ask why you are crying in the video because I don't understand English I only understand through writing if you would write me why you are crying because that also takes me emotionally because I had also experienced the disease and I was so bad too in a good moodwell man then i cried too i know that very well but i wanted to know why you cried here in particular if you would write to me i would be very happy😔
I still have vivid memories of the lows or darkness of the illness. I think it may be valuable for me to carry them through my recovery and the rest of my life. I overcame so much. I rose from a very dark place of suffering. It will always serve to remind me how strong I am.
@@SharonHen yes I can not understand how strong you were, I hope I will stay that strong and I'll go through it all.Do you also take your vitamin D vitamins so I always take my vitamin D capsules and I was always a lot of checks, neurologist, MRI, orthopedics and you have to have so much checked everything checked.what I wanted to ask how long ago was the illness so how many years has it passed that you are really healthy, that you feel really good
4 years of recovery. It feels amazing!!!!
@@SharonHen it took you four years so it's a year now for me and I still have to keep my balance so easily and somehow that it's also on the left side of the head na the brain stem or always feels a bit strange to me don't know it was the same with youstrange feeling
@@nimetdonmez6904 It took me 1 year of VRT, but recovery times will be different for everyone. My head felt strange on my affected side.