Labyrinthitis/ Vestibular Neuritis...Please Help

Hi everyone,

This forum is really comforting. My symptoms are very similar to the OP and several of you. I also think I have VN (no hear loss). I’m dealing with those symptoms since july 15th (2 months).My GP put me on a list for an appointment to the ENT specialist.  I will share with you my experience so far. First, I have to mention that I live in Canada and I speak French so I’m sorry in advance for the grammar   I’ll try to use the same vocabulary!

Background info:

I’m 31 and I work as a financial analyst for the government. My job is stressful but I always managed it well. Stress usually motivates me. I’m always saying that I’m having fun at work.  It still might be a factor for what is happening right now. I’m also a pretty active person. I was going to gym 5 days a week before hurting myself to sciatica one year ago. I stopped abruptly and this is the reason why I put all my energy into work.

Before it happened, I had sometime strange feeling for a minute or 2, like dizziness with the impression I was going to pass out. But it was nothing comparable to what was going to develop. I also never had any anxiety related problem.

How it starts:

It all started during my vacations where I’m supposed to be calm and zen.  One day, while I was walking by the street with a friend, I got a sharp pain out of nowhere, in the neck region, like a shock. I also had double vision and dizziness. I was focusing not to get unconscious. At that time I thought it was because of low blood pressure. I managed to get back home and I thought sleep will get me back to normal. Two day later, I got the very same symptoms with numbness in my arms. I was also trembling and my heart was racing. I went directly to the A & E where I had a blood test and an EKG. I’ve been told that the results were normal. The doctor also gave me clonazepam and told me it was probably a panic attack (which was in part true).  

I went back to work 2 weeks later, after my vacations. I was still taking the medication I’ve been prescribed (clonazepam). It was effective at first for reducing the symptoms but I became quickly tolerant and I still felt dizzy even while taking it. I went for a consultation with a GP the second day of work. He prescribed me something that was acting faster (Alprazolam) and an antidepressant (which I never take). He gave me a work stoppage.  He also thought it was panic attack The Alprazolam was very good at first. I even thought I was cured and I manage to finish the week at my job. However, the problem was as soon as the medication was wearing off I felt dizzy with more intense pain behind the neck and back.

During the first week of the stoppage, I had some disturbing reaction. For example, someday, I went outside and I couldn’t even stand the sun light, I couldn’t focus on anything because I felt like everything was not stable as if I was drunk. Every senses were hypersensitives. Everything irritated me (sound, light, touch) and make me feel pain. That was a horrible feeling. I thought I had a brain tumor and was about to die. During the preceding week, I was passing all day long looking over the internet for diseases and symptoms lol It was just reinforcing the anxiety. I’ve pass the next week to bed because I felt too dizzy and had pain around the neck region. I was having hard time getting a good night of sleep because of the anxiety.

When I went for the follow up with my GP I was looking a lot worse than the first time. He extended the stoppage, give antivertigo medication (I tried it only once) and was kind enough to put me on a list for meeting a neurologist and ENT specialist. I’ve been lucky enough to meet the neurologist the next week (usually it can take up to 1 year and a half). He said everything was normal. I also decided to stop gradually the medication.  I can tell you I feel a lot better without it. In total I took benzodiazepine for 6 weeks. The long term use of this thing can put you in a very depressive state.

From this point, I’ve been really pro-active with my health. I got an MRI for the neck and upper back which revealed to be normal too. I went to a private clinic for a complete physical examination. There I had blood test (another one), effort EKG, echography, pulmonary function test (spirometry ), audio test, visual test. Everything was clean. I even changed my glasses.

Overall, I feel better than the first week of the stoppage where I barely could do anything. Today I’m like between 60% - 85% of the old me. I have good and bad days. Sometime I feel almost cured but other time I’m walking backward. I’m presently on salary-insurance which help to deal with the financial issue. My family is also a very supportive. I’ve lost almost 10 pounds, mainly because I changed my habits. (eating, sleep, activities). It's crazy how this little organ can cause such condition. It can really be hell on earth. In another way, it’s probably the best thing that could happen to me. I was so much work focus that I forget to live. Now I see things differently and I know what really matter. Still.. I want to get back to normal !! But I know it may take time and changing some habits.    

What make it worse:

- Reading!

- Computer

- Endurance training

- Bad sleep hygiene

- Skipping meal

What helped :

- Abdominal breathing. 30 min a day. Like Shirshir I wasn’t a believer but it really work in the long term.

- Putting Ice pack on my back. (For 15 to 30 min)

- Walking

- Keeping a journal

- Reading. Not too much because it may make you dizzy. I recommend the power of now from Eckhart Tolle. A book about mindfulness

- Doing activity I like. Ex.: Watching movie,

- Being active

- Healthy eating

What I’m planning for the next weeks:

- Massotherapy

- Osteopathy

- Acupuncture

- Yoga

- Getting back to training

- Getting back to work

 

Best of luck to you all. I'll keep in touch

 

 

Hey all,

I cannot even begin to  tell you how relieved I am to find a forum of people who are experiencing similar symptoms to mine. My hope is to share my story and experience with working through this.

Story

I live in the US and was travelling to Europe for work. I woke up from the flight when we landed in Europe with a tremendous amount of pressure in my right ear. I figured it just had not popped so I tried yawning, swallowing, chewing gum to lessen the pressure. Eventually I had this sharp pain and the pressure was fixed. The rest of the day I was tired and loopy but figured it was just jet-leg.

Week 1- The next week I had a slight cold, but didn't think much of it. I hadn't been getting much sleep because I had trouble adjusting to the time difference - I believe this is where the viral infection started. The next day I woke up and could barely even walk to the taxi which shuttled me to work because I was so lightheaded and dizzy. I had so much anxiety about it because I was participating in multiple presentations that day and didn’t think I could make it. I felt so light-headed and was about to pass out so I visited the hospital. They were not able to properly diagnose me, so they had me lay down for a bit and then return back to work. For the next week I suffered the most severe of symptoms (dizzy, un-balanced, vertigo, blurred vision, trouble concentrating, anxiety).

Week 2 -When I returned back to the states, I visited my GP to properly diagnose the issue. He determined that I had an ear infection, which coincidentally was un-related. After taking a course of antibiotics for a week, my symptoms didn’t disappear so I visited an ENT. The ENT was able to identify the symptoms as being Vestibular Neuritis. I was still experiencing all the symptoms described above but on a smaller scale.

Week 3 – My ENT reminded me that these symptoms should go away during the next 3-4 weeks and I should try and remain active every day to help my body adjust to the imbalance sooner. Unaware that this condition existed, I immediately hopped on the internet to determine what I had. I became immediately panicked after reviewing multiple posts of people experiencing these symptoms long term.

Week 4 - This is when I started getting extreme anxiety and random panic attacks. My anxiety led me to think I was going to go crazy, that I was going to lose my job, my girlfriend, my personality, etc. The best way I found to remove this anxiety was to communicate how I was feeling to others. Do not try and be alone in this, your mind will destroy you. My mind would start playing tricks on me. I would get muscle spasms, see random lights, listen for random noises and determine whether or not they were real and random back discomfort- I was convinced I was dying of MS or cancer. Once I talked through the symptoms with my loved ones, I noticed my anxiety diminished along with my self-induced symptoms.

Present – I’m currently in week 5 of dealing with this and find I have good days and bad days. I find that as long as I can control my anxiety, I lessen the bad days. I have also started keeping a journal every day about how I feel on a scale of 1-10 throughout the day along with any activities which I find help me feel better. I would say that in general, the peaks of my symptoms are reduced and I’m starting to truly understand what I’m dealing with. Here are some activities which I find help me a lot in recovering.

-       American Football (hand-eye coordination)

-       Running

-       Proper diet – Don’t forget to eat, even if you aren’t hungry!

-       Listen to music

-       Video games

In short, try your best to maintain your original lifestyle. I hate that I have to deal with this, but I refuse to allow it to ruin my life. I also find that drinking 1-2 glasses of wine per night helps to reduce my stress and relax my mind.

It does get better! But you have to keep positive mental health about this. Recognize it will take time and the hardest part is just accepting a new feeling of “normal” for now.

Hi Shishir,

You posted your problem a year ago. Have you solved it?

If not, is your ear problem in one ear only or is it bilateral.

Let me know one way or another.  I await your response.

Isabel

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}p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0cm 0cm 10pt; font-size: 12pt; font-family: "Times New Roman"; }div.Section1 { page: Section1; }Hi ShishirFor the past seven months my husband has been suffering from what was apparently a vestibular ear problem. He tried optokinetic maneuvers, he tried the Epley maneuver (4 times at the ENT specialist´s office etc.) Truth be told, the doctor just didn´t know what he had! His symptoms (nausea and dizziness (not spinning)) were mild and the usual prescription for these things just alleviated but never really relieved him of the symptoms. He also had lots of ear pressure, fullness in both ears. He had some anxiety and tension but this was due to not knowing what was wrong. Other doctors suggested this could be psychosomatic. This didn´t make him angry, rather it made me furious. He had brain scans, inner ear scans, x-rays, blood work, audiograms and other tests and everything just came up negative. The specialist gave him a mega dose ( the "latest international protocol" for this kind of vestibular problem, he called it) of Betaserc (brand name where I live). He was on this medication for 1 day because this medication wore him down completely and he just couldn´t function. Both of us kept investigating on the internet and spoke with doctor friends of ours. It just couldn´t be ear related because, and here´s the clincher, vestibular problems don´t happen in both ears!! If it does, it is an extreme rarity! So could my husband be the exception that proves the rule? Maybe. But this was one of the things that always baffled the doctor. So, the most logical and intelligent conclusion we all came to was that whatever it was, was in fact causing vestibular problems BUT it was NOT the cause but rather the effect. This changed everything. Guess what? The problem is the cervical spine! So what he needed wasn´t an ENT specialist, what he needed was a neurologist. He spent all these months with the ENT and my conclusion is that these specialists are so, so, so, focused on their specialty that they forget to think "out of the box"! This week my husband is begining physical therapy which consists of 3 hours in the morning of massage and electric stimulation and some other things I don´t know how to explain and another 3 hours at the end of the day of the same thing for 2 weeks straight, very intensive. What he has SEEMS to be "Cervical Vertigo Disequilibrium". Whatever the case, everything indicates to a cervical spine problem. Now you know what I know and I´ll keep you posted. I hope this can help someone. Isabel

Hi Shishir

For the past seven months my husband has been suffering from what was apparently a vestibular ear problem. He tried optokinetic maneuvers, he tried the Epley maneuver (4 times at the ENT specialist´s office etc.) Truth be told, the doctor just didn´t know what he had! His symptoms (nausea and dizziness (not spinning)) were mild and the usual prescription for these things just alleviated but never really relieved him of the symptoms. He also had lots of ear pressure, fullness in both ears. He had some anxiety and tension but this was due to not knowing what was wrong. Other doctors suggested this could be psychosomatic. This didn´t make him angry, rather it made me furious. He had brain scans, inner ear scans, x-rays, blood work, audiograms and other tests and everything just came up negative. The specialist gave him a mega dose ( the "latest international protocol" for this kind of vestibular problem, he called it) of Betaserc (brand name where I live). He was on this medication for 1 day because this medication wore him down completely and he just couldn´t function. Both of us kept investigating on the internet and spoke with doctor friends of ours. It just couldn´t be ear related because, and here´s the clincher, vestibular problems don´t happen in both ears!! If it does, it is an extreme rarity! So could my husband be the exception that proves the rule? Maybe. But this was one of the things that always baffled the doctor. So, the most logical and intelligent conclusion we all came to was that whatever it was, was in fact causing vestibular problems BUT it was NOT the cause but rather the effect. This changed everything. Guess what? The problem is the cervical spine! So what he needed wasn´t an ENT specialist, what he needed was a neurologist. He spent all these months with the ENT and my conclusion is that these specialists are so, so, so, focused on their specialty that they forget to think "out of the box"! This week my husband is begining physical therapy which consists of 3 hours in the morning of massage and electric stimulation and some other things I don´t know how to explain and another 3 hours at the end of the day of the same thing for 2 weeks straight, very intensive. What he has SEEMS to be "Cervical Vertigo Disequilibrium". Whatever the case, everything indicates to a cervical spine problem. Now you know what I know and I´ll keep you posted. I hope this can help someone. Isabel

Hi just wondering how you feeling now I too have had the same condition severe to start with then a hazy not 100% feeling 2yrs on but truly feeling loads better but not the same bloke I was before the episode I just wondered if you ever felt truly 100% afterwards I also had the slight feeling in my ears with anxiety not sure if it was dreading any return of the condition or whether I felt slightly mentally scared by it all j fletcher

You need to explain all this to ENT and possibly get a scan done. Let us know how you get on.

Sounds like you have a chiari malformation !! Get an MRI scan on your head !! You prob have a herniation in your cerebellum !!

Hi,

This is insane but i am going through the same arrow of feelings as i typing this message.

Background:

I am 27 years old, It all started back in November 2014, it wasnt too rough, but my ear started to pop pretty much right after a workout. Specially after bench press and after a chest and shoulder day, i use to experience pain around the neck region and pressure in my ear,  the same sort of pressure one would feel when a plane is gaining altitude.

Episodes of vertigo and nausea hadn't begun then. I was taking Champix and I was trying to quit smoking. I did manage to successfully quit smoking, but I landed up with major anxiety problems after quitting. There were times when I would literally start to sweat.

4th of December 2014 was the first time I experienced vertigo, that too at its best, I thought I was getting a heart attack, the world around me was spinning and I could hear my heart beat.

I had started doing a cardio intensive workout called “Insanity” initially I blamed the workout program for causing the vertigo. By the second week of December I started feeling a lot of pain in the ear and my ear was popping quite frequently. Vertigo and nausea was at its worst. There were times when I use to walk on the street but not be able to recognize peoples faces, every thing to me was smudged. Every time I look at my computer screen the strain just kills me, I look at the screen for a minute or two and then look away for a couple of seconds as my eyes start to water. The strain on the eye is just insane.

I did meet an ENT in December but I guess he had no idea what was wrong with me, he made me do a blood test for Vitamin D3 deficiency, but never suggested any thing relevant like the balance test that shishir has done.

So I am planning on visiting a new ENT on Monday and start doing some tests like MRI and Balance test that Shishir has suggested, is the balance test the same as Computerized Electronystagmography (CENG).

Would really appreciate some help and advice.

If you have had any help with this then please let me know. I am having this same exact problem, the same exact symptoms and mine get so bad that I have a seizure. I woke up from a wreck in an ambulance with my babies looking at me crying the last really bad episode. The doctors have all tried to write the stiffness off as my prior back injury and look at me weird when I explain about the pressure in my ears. This all started for me at about 15 years old, I am now 30 and I look back and have episodes of this. This one now being the worst and more severe. I have been piled up.with narcotic after narcotic and that is a whole not her problem on its own. I just want to feel normal again, I want to live my life and be able to have strength to do it. I did find Yoga and exercise to suppress it some but it kind of masked it and the really bad days, I just can't make myself go. Then the recovery from the bad day leads up to another bad day and it's a vicious cycle. I do also find it worse during the onset of my menstrual cycle as hormones have to play a role in what ever it is. I find it also gets worse when I am driving and the anxiety gets more severe. I am a mother. I have no family, no one but me , my husband who complain about me being lazy although I wish that's all that it was and my children. I live for them, I push myself for them but I feel the verge of being pushed over a ledge. Any help on any diagnosis and medicine that actually worked, even masked will help. I am sitting in a publix parking lot right now the symptoms are so severe lol. It is good to know I am not the only one experiencing this.