Vestibular Neuritis Recovery Story (9 Month Update)
Vložit
- čas přidán 13. 09. 2024
- Recovery from vestibular neuritis / vestibular hypofuntion / inner ear nerve damage is possible! This little update is meant to encourage those that are suffering still and on the path to healing. Positive recovery story! It can get better!
You're an inspiration... I've cried so much... God I just want to see the light at the end of this tunnel...
I feel for you and can relate. Just remember it takes time and it WILL get better.
Have you recovered? This is hell for me right now.
Thks lot for posting I am in 14 month getting better day by day good luck
What you do for that recovery pls tell me
Thanks for doing this. I found that your sharing of the symptoms especially the physical effects such as twitching and tingling feelings palpitations etc helpful and are common amongst sufferers of VN. I too was so anxious about MS that it made everything worse. I'm a 63 year old fit man never taken a tablet in my life suddenly reduced to a gibbering wreck worrying about the future or if I had one! Now having said that I have not actually been diagnosed with VN by my doctor but I can identify with your story albeit with less severe symptoms. He went through a short demonstration showing me the Epley manoeuvre but did not commit to any diagnosis. I did have mri. All clear. All other checks positive bloods heart etc
He basically told me I'm not going to die and to carry on with life (My symptoms were much less than yours in terms of imbalance...... I had woosy lightheadedness which still affects your daily life pattern) as normal. Keep active keep socialising driving even. What he hasn't done is give me the certainty you have with VN. However I'm gradually improving 10 weeks into this . I even played golf with no woosiness yesterday which is very encouraging. I'm taking it day by day some better than others.
Finally can you tell me and the surprising amount of fellow sufferers which exercises worked best for you. Is it Epley or other named manoeuvre s.
Thanks again. you're very good at explaining a difficult issue that affects so many, in a very gentle way. I wish you a healthy active life. Dan
Great video, describes this condition perfectly as well as the anxiety part which took me 11 months to realize was part of this disorder.
It does get better if you do your VR exercises and get out into the world as much as possible to help re-wire your brain.
I would add that it's a good idea to keep doing your VR exercises everyday even after you feel "normal" again, this will help with any possible relapse.
Agreed. It's a great idea to keep it up and to stay active.
Como te sientes ahora, estas mejor ??
Thanks for these. I’m back to square one again. I thought I was 100%.
You will be ok
this disorder can be a real ass. hopefully you've seen improvement yet again.
How are u now??
Thank u so much for sharing your story. I really needed to hear that hope from where I am right now. Thanks again. Really helped me!
Thank you so much. Your positivity is so helpful. It is a shock when it happens and believing it will get better really helps. Best from UK😊
Thank you for sharing your experiences and making us hopeful about getting better. I have been suffering with these same symptoms for about 10 months now and initially no one seem to understand . My MRI came out normal that strengthen the believes other had about me that I was being lazy, faking, having psychological problems and what not. Finally, i went to another doc who did vng and inner test and found that my right inner ear had canal paresis 42.6 percent . They diagnosed it as right peripheral lesion or vestibular neuritis. Meaning my right ear was hypoactive. I am glad that I ve finally got a diagnosis that can explain my sufferings. Because there was a time that even I started to believe that I was going mad. I cant stand properly and teach. Therefore I am on leave. I am doing vestibular rehabilitation which are making things better but I cant say I have recovered. I am praying to reach that point where I can do things normally. So these videos are really encouraging. Thanks.
I hope you are seeing improvements. Sending well wishes
I just wanted to let you know, your videos have helped me understand gave me hope for a healthy future. Im in the 2nd month of this and I'm nowhere near as bad as the first few weeks but I've already started my PT and am gonna work my ass off to get a recovery close to yours. I am forever grateful for each update of your recovery. THANK YOU
How are you now?
@@BradPwnsU compared to this, way better. But it's a long road to normalcy. I get blips several times a day while I'm working but nothing as painful as it was at month 2. I still have a lot of work to do to completely compensate to all motion but I'm working on it. Definitely really mentally challenging. I had to get on antidepressants and see a counselor. Definitely something that helps
@@robmitc7 wow well glad to hear you are doing better, hope you continue to improve! I'm there with you i just started with this illness 2 weeks ago
@@BradPwnsU did you get a diagnosis?
@@robmitc7 not yet but when I went to the doctor he said I had fluid in the ear and his best guess was swelling due to a viral infection. Im waiting to see an ENT now
Thank you so much for sharing! I appreciate your openness regarding how emotionally difficult it is to go through the process of recovery. I agree that it is the hardest thing I've ever been through and it has involved a lot of tears. There's kind of a grieving element to it I think. I am 7 months into VN. I've definitely improved, but it is still a struggle. I am a law student and I think having to sit and read for so long everyday is part of the reason I am slower to compensate. I keep trudging along though, and I've somehow managed to keep my #1 class rank and continue to earn amazing opportunities. Progress is slow--snail's pace slow--but things are getting better. I've been on the keto diet for the past 6 weeks and that has seemed to help too. Also, happy belated birthday, Virgo! Mine is Sept. 12th.
I can't imagine having to be in school while dealing with this. That sounds so challenging. I'm impressed. Reading always made me feel sick after a little bit. In some ways I think it would help you, because the only way to retrain the brain is to keep introducing it to the triggers. Just try to get as much rest as you can so you can stabilize and then go at it again!
Your video made me cry with relief...you have touched my heart and have inspired me to feel hope..im just over 2 months in with VN+ or VM ..you answered every think i wanted ro ask you...thank you from bottom of my heart... i pray i can do the same as you for someone else when i improve...continued healing and gratitude fod you and us all ....Thank you 💛💛💛
You are so welcome! I'd hug you if I could. It's been 2 years now and I'm happy, healthy, and living a full and beautiful life. You will, too.
Esther how are you going now?
Really appreciate the videos you have posted. Have just been diagnosed and your story is so helpful. You’re inspiring ❤️
Thank you for your videos. Currently going through a set back and good to hear positive stories.
I’m also going through a set back. Did it feel like you had to start over? Or was it less worse than the first time?
I’m going through it almost 2 years now.. I’m doing a lot of what you did and do.. I feel it’s getting better slowly.. Yes very grateful for everything I can do.. Thank you for sharing!! You are blessed
How r u now
Thank you so much, your story gives me hope. I just hit 3 months last week with my VN diagnosis just started seeing some improvement
Happy Birthday, Good to see you doing so much better. Gives so much support and encouragement to anyone facing this terrible illness. I have a few questions hope you don't mind.
1. Do you still have or sometimes feel the stiff neck.
2. Do you still take anti anxiety meds.
3. Did you take any health supplements which helped with this.
Much love to you and thanks for the update.
My journey continues but like you I've come much further than I was and making progress monthly.. Can do most things I use to do now.
But health anxiety has become a major issue for me now sadly. Hoping to do some cbt soon.
Hi! The neck stiffness and pain is mostly gone! Once in a great while it bothers me a little but not like it did. I do still take lexapro. I like how it makes me feel more calm. I did take supplements. Fish oil, magnesium, zinc, vitamins
@@lindsey8081 hi! Which vitamins?
Thank you so so much!!!
Thanks for you update, it’s encouraging to hear you’re essentially back to normal. Just out of curiosity, are you still on the meds you mentioned in your other video?
Yes
Currently going through something similar got sick with RHS back in October 2017 spent 6 months recovering I suffer from vestibular hypofunction unilateral still woozy and nautious when walking and looking around fast and general woozy brain fog feeling I've only been doing real VRT since about February hoping I get back to my 100% I'm 19
Good luck! It's the pits! Keep it up even when it's awful. Rest when you need to. Be active. Go for walks and runs. Such a hard time.
Thank you so much for your update and Happy birthday to you 🌹 . Are u still taking you anxiety medicine which u mentioned in you last video ?
Yes, I am still taking a low dose of lexapro
Thanks for sharing your story. I'm 7 heavy months far now, balance organ is stabilized and brains are adjusted but i have still complaints...
How are you now
@@nituyadav4678 after 2 years and 4month's....Still feels like a have drinking to mutch, with ups and downs. Better periods and backfalls..
@@labaeremarc thank u sir for your reply
@@nituyadav4678 if you have the same NV problem, know that every case is different. Not everybody has still complains after 2 years. I wish you all the luck.😉
@@labaeremarc 🙏
Thank you for your videos. Extremely helpful. I am 8 weeks into this awful experience but feel I am making some progress. Does looking at your computer screen and/or scrolling on your smartphone cause you any issues? ? I am having those issues in particular (along with feeling like I am on a boat all day). Want to know because it impacts my job. Thank you
Scrolling on my computer used to make me feel sick and trigger headaches. It took time and that went away for me.
donovan Ivie I’m 8 weeks in right now and only starting to have more good days than bad. But I know I’ve got a long way to go. I started PT/VRT 2 weeks ago. I’m being diligent about doing the exercises 3 times a day as directed.
Hi Lindsay do you still have muscle twitching ?
2nd month on this. Might be related to my occipital neuralgia, off balance. Fighting thru this and exercising, going to grocery, etc. Still working.
What do you mean by physical therapy exercises? Like the vestibular rehabilitation exercises?
I'm in my 5 month in feeling dizzy all the time. It's nice hear that there a light end of the tunnel. I'm tired of feeling dizzy all the time.
I know. It's hard to feel like crap everyday. But, there is light. People do get better.
Thks for reply I am on lexapro 5 mg getting better take care
Hi Lindsey! :)
I’ve vestibular neuritis for 3 monts now. My doctor put me on Lexapro for the anxiety, but I’m affraid of the side effects. Did you feel side effects the first few weeks? And Thank you so much for this video 🙏
Honestly, I only noticed positive things. I felt so shitty from the VN that if there were any side effects from the lexapro, I didn't notice I guess. I started to feel the benefits of it pretty fast, too. Within a week.
Im so worried about not being able to work or gym or ride, that’s my biggest worry. It’s been 2 months now and I’m still chasing a definitive diagnosis but the VRT exercises are helping, I’m off beta blockers now so I can really feel my improvements. Unfortunately in my country it seems no one knows or can do an ENG test, I got a second ENT consultant visit in a few days and I’m just gonna say, don’t tell me what you think doctor, just do this test. If that doesn’t work I’ll need to get on a plane and visit a balance center in Florida or London. Did you ever fly while experiencing symptoms? Did you ever get worse after flying? I’m concerned about the fullness in my ears and doing more harm than good. Then I’ll think about making it through an airport 😔
Thanks btw, your videos really give hope, can’t wait to pay it forward when I feel better
I did a lot of flying in the heat of being sick with this and it did not increase my symptoms or make me feel worse. I flew from Australia to the States. I was really nervous so I took a valium which probably helped keep me calm and prevented me from feeling worse. I had a few other flights during my recover process and I did not notice feeling any symptoms increase from it. I was worried my ears wouldn't pop or would hurt because they felt so full, but they were fine. Good luck to you. If you end up having to fly somewhere and have to wander around an airport, try thinking about the exposure to the airport as training towards getting better. Stay as calm as you can, walk holding your head steady and try to focus on a point ahead of you that helps you stay steady. Or! Get a lift in a wheel chair if you need to!
Lindsey McKelvey thanks so much
How are you feeling now. I’m on my fifth month. It’s an awful illness. Being positive certainly helps. Also I watch Lindsay vids when I feel low. Knowing that life can be Norma. Just takes a while.
Hi Lindsey! I'm 32 & from the UK & have yet to be diagnosed as the doctors here seem to have no idea about labrynthitis or vestibular neuritis, well they do but they seem much further behind the US...I have had it now for coming up 3months & have the exact same symptoms you described in your previous video, what was it that you changed that made you take a turn for the better? Other then taking an SSRI. Many thanks!
I think just time and steady exposure to things. I just kept at the PT and everyday did things to stay active and challenge myself and it eventually paid off. And calming the anxiety helped a lot. You can do more when you aren't having panic attacks!
Hi Lindsey, how are you doing? i was wondering if you experienced like walking on a trampoline sometimes? yesterday i was walking fine a little wobbly on my head but then suddenly i felt like i was walking on a trampoline i thought the ground was bouncing up and down and i thought my feet were sinking everytime i step in. so i had to go back to my car and go home
hi! I'm doing well! Happy and healthy. To answer your question, yes, I had sensations like that. They were the pits. Keep getting out when you can and rest when the symptoms flair up. That's the best you can do. After a while, once I knew what I had, the symptoms were not as scary because I knew I wasn't dying and I wasn't going to pass out so I could start to move through the world and start to get better. You kind of have to allow yourself feel like shit in order to improve. A real drag, but you'll get there.
Hi did you have a tugging sensation at all? I’m 3 months in and barely starting PT because of the holidays. I’m very afraid :(
I'm sorry you're scared. It scared me, too. I think the biggest thing to know is that all of our bodies respond tho this differently. You will experience so many different symptoms and sensations as you move towards being healthy again. Try not to be afraid. Breath deep. Believe you can get better, it just takes time.
@@moonshinehikes3107 Thank you so much for your response I really appreciate it. I’ve watched your videos over and over again so that I can maintain a positive mindset. Does loud music affect you at all sometimes? I am a DJ and something worse couldn’t have happened to a musician because it really overwhelms me know to be around loud music
@@ariannefew loud noises and bright lights bothered me in the beginning. Eventually that went away. Anything that wasn't calm and quiet and orderly seemed to make me feel.off and disoriented. You have to keep exposing yourself to those things though. Small doses of possible.
Just curious how long you did your PT exercises after you felt recovered?
I did them for 3 solid months everyday and then tapered off and did less PT and more of just living and being really active with the occasional PT exercises thrown in. (started PT 1.5 months into being sick, felt worse for about a month, then started to see improvement). I would say I felt normal most of the time by 7 months in but had stopped full time PT at about month 5ish (which is when I started work back up and traveling again).
I probably would have benefitted from continuing them, but, in a way I just needed to stop thinking about vn and to just live and be active and know that that was helpful, too.
@@lindsey8081 I think you've outlined your store recovery. When would you say you felt normal in a store. I'm at 3 months and feel pretty close to normal in restaurants, maybe b/c I'm sitting. But walking around stores is terrible. I can got to stores now and function the weirdness for a half hour without headaches, but it's nowhere near normal.
@@sarahlucas2557 I started noticing improvements after 3 months and then I'd say by month 6 I almost always felt normal. It used to make me feel so so sick, tired, and anxious. I just kept exposing myself to stores everyday for at least 15 mins until I could walk around without feeling strange. Then I'd start looking around more and staying longer. If I ever got dizzy Id pause, look down at my hands, and breath deep breaths for a minute. Then I'd usually feel OK to start walking around again. Slow process, but it paid off. I don't even think about feeling off in stores now. It's great.
@@lindsey8081 Thanks! Really appreciate the response. I know my PT said stores are the final hurdle and I have made a lot of progress in the last 3 months. But going to the mall yesterday makes me quickly forgot how far I've come. I too go into a store almost daily and can tell I have made improvements, it's just not normal yet.
I’ve been doing therapy now for about 5 months and things are getting better for me! But, I still have “bad” days where it’s flared more than usual. Did you experience this? I can go weeks feeling much better and than BAM! a few bad days in a row. I’m hoping this is a normal part of the process and doesn’t mean compensation isn’t working. It’s hard to stay positive when I feel like I’m having set backs. It’s also worse around my cycle for some reason. Just seeing if any of this sounds familiar to you.
totally normal!! recovery is a bumpy road.
how are you now kelli ?
How are you now ?
I have the same, especially after I get a flu
Hiii Lindsey ur vedio is very inspiring I’m at my 6 month definitely I improved but while travelling from car or flight triggered my symptoms I feel that motion is still with me after getting down from car or flight I’m so scared 😱 do u have these symptoms??
Hi
I have these same symptoms. Trampoline walking after driving and the bouncy sensation. The ENT said to continue with VRT exercises as there is a disconnect between my eyes and ears and an over reliance of my eyes for Vision
Was dc with VN back in June 2022 getting better each day but very frightening at times
@@sherinecraig9663 even I got this problem in month of June but do u feel that ur getting better??
hi what sort of vrt exercuses did u do? i began my own idea of doin more what makes me dizzy that when the therapists gave me exercises i felt they didn't feel challenging
If an exercise didn't feel challenging or make me dizzy anymore, I'd either move onto a new exercise or tweak it until it challenged me. I'd make sure to not over do it. If I'd get dizzy or feel terrible for more than 5 mins after an exercise then i knew I had pushed it too far and I slowed it up (in the beginning month I'd feel like crap all day if I did anything so, this was more once I had already started getting better). If you Google vrt exercises I did them at at one point or another. Worked my way through them. And then would make things up and keep doing it each day until it didn't bother me anymore.
@@lindsey8081 thank you thats similar to what im doing. do you or did you ever feel "out of it" dazed kind of floaty not dizzy or loss of balance just not fully alert or with it
How long did it take you to get over the visual symptoms. Like going in to the store, restaurants ,etc...
The first 3 months were the worst. I'd need to lay down after being in stores. I started noticing improvements in the 4th month with being able to go into a store and come out feeling ok. Not always, but sometimes I was ok. A much quicker recovery time. In the store, my vision would still blur when I was reading labels the 4th month, but I could stabilize by looking at my hands and taking deep breaths. By the 6th month I very rarely had any negative feelings in stores and my vision felt pretty much normal. Now I don't even think about it when I'm shopping. Through out this whole process I made sure to go into a store almost everyday. I'd just go in and do a loop. Then started spending more time in them.
Hi Lindsey congratulations on your recovery. I am going through the same right now. I have severe anxiety also. I just want to ask you if you had tingling sensations over your body anytime during this?
O boy, sure did. I have no idea if it was the anxiety caused that or the disorder itself, but yes. I hated it!
Lindsey McKelvey how long did that tingling sensations last for you? 😊It really bothers me when I sit still and try to do something.
@@raajje1 probably 3 to 4 months I'd say? It just got progressively better as time went on.
Lindsey McKelvey and did u have problem watching movements while watching TV? I am sorry I am asking u a lot of things but I am still trying to convince myself that I don't have some weird disease.
raajje1 My experience started 6 weeks ago. Never taken any alcohol, smoke or drugs. Very healthy active person. The dizziness has subsided slightly. The palpitations, tingling and palpitations are awful. Want to feel better.
Hey! I’m currently 4 months in and the only symptom I still have is jumpy vision.
How long was it until you no longer dealt with that? It’s one of the most frustrating things for me
It was so frustrating. The jumpy vision would flair up and go away during the first year. for SURE it stopped ever happening after a year and a half (maybe even sooner than that). I see this comment was from forever ago- so I'm hoping you aren't dealing with it anymore.
Hello, did you get rid of the jumpy vision?
How long did the vertigo last
How loud is your ringing and does loud noise bother you??
It was super loud when I was sick, but now, 5 years later, it is a dully background ringing- kind of like a white noise that I don't really notice anymore. It doesn't irritate me. I can sit in a quiet room and not notice the ringing, but if I think about it, I'll be able to hear it.
@@lindsey8081 I'm only 6 months in, the loud ringing causes my brain to get foggy.
Please someone tell me about tests for this disease
Vng test from an ear nose and throat doctor.
@@life-mm5do thank you .. 💓💓💓💓but these tests are not available in Pakistan 😢😢😢
All vestibular disorder exercises are online if are unavailable in your country,eye gaze and balance exercises will heal you, do them three times daily. All of the eye gaze throughout the day,very slowly, there are video examples online. Do those a total of 20 minutes daily. After you recover, do them daily just to maintain your vestibular disorder,or you can regress
How r u now?
I'm fabulous! I feel normal, happy, and healthy.
@@lindsey8081 still r u on any medication and vrt?
@@anushaanu5317 I take the SSRI still, but I continued that because I noticed how it helped me over all with other things in my life. Otherwise, back to normal. I don't do any thing I didn't do before I was sick.
@@lindsey8081 r u using any vitamin supplements?
@@lindsey8081 how long are you Dizzy? Are you Dizzy all the day ?
Hello Lindsey, i am 6 months into VN and i am imprproving on weekly basis. i do the eyes closed standing on a foam and moving head back n forth n side to side. I can feel the magnet like pull in my head while i do that exercise, and it makes me unstable.
Did you experience the same feeling at 6 months?
I also do gaze stabilization while looking at a letter on checkboard.
I wanted to know are you able to see the letter clearly now while doing gaze stabilization? And what speed you considered to be optimal for recovery ?
Please answer my query. I want to move forward according to the guidence. Thank you
Yes, if I were to do the gaze stabilization exercise right now, the letter would be clear. It's not as much about how fast you move your head, it's about staying focused on the letter while you are moving your head from side to side. If it is blurry, slow it down until you are at a speed that it stays clear and work your way up from that. If it starts to make you feel unsteady/dizzy- great- that means your brain is being challenged. Stop when you get dizzy and get into a position where you feel stable and breath deeply until the bad feelings subside. When I used to do this at the beginning of my illness, I would take 30 minutes to start feeling better. A few months later it would only take 30 seconds to feel better. That's how you can measure your improvement. If an exercise does not make you feel ill, than you have moved past it. Make it harder (put the letter on the TV while a show is playing, do it while walking, etc).
At 6 months I was still noticing some imbalance, but not much. It was less of a feeling in my head at that point and more of a body sensation of being off balance.
Thank you for the feedback. I am greatly inspired by you. I am working very hard to get over this awful illness.
All the things are improving. But looking at cellphone is still getting me. Do you suggest any exercise for it that might have worked for you? .
@@simransingh89 just repetition. If you are exposing yourself to your phone and stopping when it makes you feel bad so you can recover, then that in and of itself is an exercise.
Mine used to make me feel off, too.
The gaze stabilization in front of a busy scene or a TV would address some of this too.
Im in my 4 months.
How are u now
I am in my 2month my vision is awful my test was neg but still have symptoms of it
Eye Dr can't fine nothing in my eyes
What med did they given you
Hi r u still taking antidepressants
Hi! Yes, I am. I am still taking the lowest dosage of lexapro and will continue to for at least another year. I was also prescribed gabapentin for the anxiety when I was sick, but have found that taking that is no longer needed and have weened off.
test
I have hard time focusing clearly on objects
I can’t go on escalators it makes me very dizzy and unbalanced most of the time I feel like I want to vomit I have light sensitivity especially at night if I close my eyes and try to walk I feel like I’m going to fall my symptoms are constant they have gotten better over the last 2 years but they are still with me sucks I’m beyond tired of feeling this way!
You reply to everyone else except me 👎