Labyrinthitis – A wicked wind blows

(Though I normally post about all things photographic, I wanted to shed some light on a little known, but common illness called Labyrinthitis)

It’s March 2014, and we’re on a family holiday near the beach. The town is rustic, but certainly not lost to time. It’s not tourist season, so the main street is empty. A popular cafe does a good business on the corner; achieving success quietly with a menu more sophisticated than most, and betraying the big-city origins of its owner and chef.

It’s been windy and cold for days now, and I still have this annoying virus; mild though it is. Despite this, I’m in town to grab a pizza for dinner. It’s getting late and the sun is setting, so I order our food and take the opportunity to make some photographs of some of the old houses in the town.

With warm pizza box in hand, I cross the street and walk to the car. Just as I open up the car boot to pop in my camera gear, a sudden dizziness comes over me. It feels a little strange, but I put it down to the cold wind having tickled my ears for days. I’m sure I remember my mom saying something about getting dizzy because of too much wind in her ears. I’m not sure though…

As I drive back to our holiday unit, the dizziness becomes worse. I’m sure this is vertigo now. Everything is spinning and it takes a lot of concentration to control the car into the driveway. I get out of the car and hold onto the wooden railings on the way up to the doorway. I feel like I’m on a wild ride at a showground, with the nausea to prove it.

As I enter the unit, I put the pizza down on the kitchen bench as best I can without falling over, and make my way giddily to the bedroom to lie down on the bed. It’s really scary now. My eyes are darting from side to side as I try to get my bearings in space. What’s happening to me? Is there something wrong with my brain? Have I had a stroke? I think these things as my family ask me what’s wrong. I try not to make too big a deal of the situation and tell them to go and eat.

Thirty minutes later the nausea has decreased and the vertigo is subsiding. I’m still dizzy, but the worst symptoms are over.

Its the next day and only a slight dizziness remains and a strange feeling in my head as I turn it. I can still drive, even though I probably shouldn’t. I think it’s likely an ear infection of some sort. It makes sense.

A few days later and the dizziness has gone. There’s no vertigo, but I still feel nauseous when staring too long at a computer screen or watching something scrolling up and down. It’s time to visit the doctor.

Labyrinthitis and vertigo
bykst / Pixabay

The Doctor says…

I tell the doctor my symptoms, and he tells me I have Labyrinthitis.

“I haven’t heard of it. What is it?” I say with a puzzled look on my face.

“It occurs when a virus enters the labyrinth of the inner ear and causes swelling in the nerves. It can affect balance and mood.” Sounds like he’s reading right out of a textbook.

“How long will it last?”

“After an initial bout of vertigo, the symptoms usually disappear in 2 to 8 weeks. There’s nothing to worry about.” Doctors always sound reassuring when they say things like this, but I’m going to research more about it anyway.

Here’s what Wikipedia has to say about Labyrinthitis:

“Labyrinthitis, also known as otitis interna, vestibular neuronitis and vestibular neuritis, is a problem of the inner ear. It results in vertigo and also possible hearing loss or ringing in the ears. It can occur as a single attack, a series of attacks, or a persistent condition that diminishes over three to six weeks. It may be associated with nausea, vomiting. Vestibular neuronitis may also be associated with eye nystagmus.”

I read all of this, and it seems to make more sense. The respiratory virus I had before the holiday must have entered my inner ear and caused some problems. I still have mild nausea when looking at a screen for too long, but it’s manageable. Also, when I walk I have to concentrate more than normal to walk in a straight line. It’s a strange thing this Labyrinthitis…

More than Labyrinthitis?

Some months later and I’m back to see the doctor for the sixth or seventh time. Things are much worse. It’s not the nausea or the dizziness now causing problems, but the sudden increase in anxiety. I think I’m also depressed. I look forward to going to bed just so I can take a break from the constant worry and stress. I know what the doctor said, but I still can’t shake the feeling that something else is wrong. It feels so much worse than the doctor’s cheerful textbook description suggests !

For the last few weeks I’ve been in a zombie-like state, just trying to get through each day. I’ve been getting pins and needles in my arms, legs, hands and feet; my neck is unusually stiff; I have headaches that last for days; my legs and arms feel heavy and weak; and my muscles are twitching. I feel like I’m going crazy. Maybe I have something really serious? Maybe the doctors are wrong? Damn this Labyrinthitis !

labyrinthitis
johnhain / Pixabay

“How are you feeling? Are you still dizzy?” He’s a kind enough doctor really, and is quite thorough in his assessment. We call him Doctor Z.

“The initial vertigo is gone, but I still have to concentrate to walk in a straight line. There are also times when I feel like I’m falling to the left side, especially when near a wall. The other problem is my anxiety. It’s getting much worse and I think I need to go back on Lexapro to try and get it under control.” I blurt all of this out in one speech so as not to miss anything. He frowns and pauses before saying anything, as if I’m going against the expected trajectory of the illness. Maybe it’s all in my head? I hate it when doctors look puzzled like this. It makes me worry even more…

“I’ll write you out a script for Lexapro, but it might also be a good idea to see a Psychologist to help with your anxiety and depression.”

The doctor hands me a short questionnaire to fill out to describe my state of mind. There are no surprises here: questions about suicidal thoughts, sleep patterns, tiredness, energy levels, motivation. I guess it gives the psych something to work with.

Having researched more about the illness on Dr Google, I know that some people suggest seeing an ENT specialist because they know more about vestibular disorders like Labyrinthitis than family doctors or Neurologists.

“Can you also give me a referral to see an ENT specialist?”  He considers my request thoughtfully for a moment and nods his head. I suspect that he can see how worried I am. And besides, I know there are VRT (Vestibular Rehabilitation Therapy) exercices one can do to help the brain compensate for the disruption in balance signals. The ENT would refer me to see a physio that specialises in this if he thinks it necessary. Once again, damn this Labyrinthitis !

Visiting the ENT specialist

So far, I’ve been disappointed in the lack of useful information received on this disorder from the Doctors I’ve seen. Knowing through experience that Doctors often get things wrong, I guess it should be no surprise that talking to them about it is akin to talking to a dry medical dictionary. Labyrinthitis seems to be a disorder that is common enough, but receives little attention. The mechanism of inner ear disruption seems to be known, but knowledge about the psychological and physical symptoms of the illness presents as thin.

I’ve been reading theories that the inner ear is somehow linked to our emotional brain, and any disruption can cause depression and anxiety. It seems that in some people, the offending virus causes long-term problems as the brain struggles to compensate for the changes to balance signals coming from the inner ear. In most people the brain compensates fully after 3-8 weeks, but I’m beginning to think that my brain is compensating and then decompensating.

After a hearing test and a few balance tests, the ENT is confident that I have Viral Labyrinthitis. His confidence makes me feel better, but he wants me to undergo a brain MRI scan just to make sure it’s not an Acoustic Neuroma or something more serious. Naturally, this concerns me even more, but I walk out of there feeling buoyed by his assurances. Oddly, my zig-zaggy walking improves almost immediately.

Fast forward a week later, and it turns out there’s nothing wrong with my brain. My confident ENT formally diagnoses me with Labyrinthitis…

In Part 2, I’ll be discussing my experiences with the Psychologist, my state of mind and where I am right now…

 

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Labyrinthitis – my struggle with a vestibular disorder

36 thoughts on “Labyrinthitis – my struggle with a vestibular disorder

  • November 1, 2017 at 9:54 am
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    I have had dizziness for a year – I saw an ENT and had tests showing 85% of right side vestibular gone, most likely a viral infection to an already vulnerable middle ear. I was assaulted as a child and my right ear drum ruptured – consequential surgery. I had since middle ear infections – now this. I have been to a vestibular physiotherapist and did exercises faithfully – now I feel like giving up. Constant feelings that I am walking on a trampoline, spinning in head….I just never get any reprieve. Do yoga (sometimes falling over), avoiding shopping centres (as I am prone to lurching to one side as if drunk), it just seems I will never get away from it. I only like sleeping, everything else seems a battle and I am so tired of it. Has anyone any experience with an operation? I would do anything. Am down to see a neurologist, but appt months away.

    Reply
    • February 1, 2018 at 12:00 am
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      Hi Marianne. Sorry to hear of your troubles 🙁 My balance has never been the same since the dizziness first started. Some days are better than others and it’s manageable, but other times I need to force myself to walk a straight line. Of course, I am no Doctor. It sounds as if you have had a history of ear problems and this may have some bearing on your current condition. The truth is that not enough is known about how the inner ear interacts with other parts of us, including our minds. What seems to be clear is that inner ear problems do have a bigger impact in some people on their psychological state. Further stress and anxiety can also lead to an amplification of symptoms, including dizziness and other things. Let us know how your appointment goes.

      Reply
  • August 13, 2017 at 10:06 pm
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    Hi
    i’m 30 and i’ve just recently been told i have labrynthitis after thinking all sorts. so far i’ve had nausea, dizziness, trouble concentrating, anxiety which i out down to panicking about symptoms, pins and needles in hands and arms, feeling i’m not really with it at times brain fog, headaches that feel like pressure on top of my head and at the back, i’ve on occasions got my words mixed up, my memory’s not the best anyway so can’t really put that down to this. In general it feels awful, i have two young children to try and look after when all i want to do is lie in the peace and quiet. Does anyone else struggle with loud noise levels? i seem to just want quiet all of the time.
    This is fairly new to me as i’ve only been suffering with symptoms for a week and already i’ve had enough.
    i went to urgent care where i was diagnosed with labrynthitis, the doctor said i had white discharge covering half of my left ear drum and my right ear was sore.
    Possible causes ive not long returned from a holiday where i swam a lot and travelled by plane.
    All in all i’m still panicking daily about this and it’s already been a week from hell im praying it doesn’t last forever

    Reply
    • October 9, 2017 at 1:02 am
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      Hi Laura. How are you feeling now? I have heard of all of those symptoms before, and the trouble is that the illness seems to affect everyone a little differently. Some doctors just flat out won’t believe you when you give them a list like that, but it’s important to not be discouraged by that. Just remember that doctors don’t know everything. The discharge sounds like an ear infection, but travel by plane can put pressure on ear drums due to air pressure changes. The problem is that Labyrinthitis can be caused by a number of other triggers. Have you seen a specialist?

      Reply
  • June 1, 2017 at 2:55 pm
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    I am on day 72 of this. It seems mine is a result of flying with a head cold. I had also been on a very windy beach for several days just prior to this. I have been having daily migraines along with all of the symptoms you have described. Physical improvements have been slow. It’s a lonely experience because of the limitations. I am off work, not driving, avoiding crowds and walking anymore than 15 minutes and I start leaning left feeling like I might fall. I hear that one day the labrynthitis will just be gone. I am really looking forward to that day.

    In the meantime I am working with a vestibular physiotherapist and just saw a neurologist.

    I am now on a variety of vitamins and using Cambia for the headaches.

    It’s good to connect to other’s struggling with this. Take care.

    Reply
    • June 8, 2017 at 7:48 am
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      Hi Lee. Thank you for your comment and your sharing. It is interesting you should refer to the windy beach, because my case is similar in that I had a head cold, blocked sinuses, and I was exposed to heavy winds for a few days before developing the initial vertigo. I initially linked the two until the doctor just looked puzzled and shook his head. I do wonder if there is something to it though? Having a cold wind whip into the ear canals for more than a few hours can certainly hurt.
      It is a lonely experience and even as I described it, most people never quite grasped the range of symptoms. How are you now feeling?

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    • October 6, 2017 at 4:18 pm
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      day 52 and want to die I cant take it anymore

      Reply
      • October 9, 2017 at 12:57 am
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        Hi Karen. Hang in there! Have you had an official diagnosis for your condition? Have you been able to see a specialist like an ENT doctor? What are your main symptoms?

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        • December 4, 2017 at 6:05 pm
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          Hi Steve, it’s been 15 weeks and still no improvement . Been refers to London vestibular medicine. Can’t cope no more . Vtr doing nothing

          Reply
  • May 14, 2017 at 6:43 pm
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    Going through the same living hell…I keep moving despite all the imbalance …please post part 2….pray every one who gets this bug has the courage to fight it out

    Reply
    • May 16, 2017 at 2:37 am
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      Thank you for posting your story. It’s really important that you keep moving. If you feel nausea and spinning, take a break. Have you seen a doctor?

      Reply
  • November 18, 2016 at 12:22 pm
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    I am on week 6 of this horrible thing. I get 2 or 3 not so bad days, then wham back down with naseau, dizzyness and seems to affect my eyes. They seem so sensitive to look either way, so I lie in a dark room. The aniexty during these attacks make my skin hurt and I just am so jittery I want to crawl out of my skin. I am on day 3 of not feeln bad today. It takes a day to rest from the attacks. No one can imagine the feeling and feel crazy explaining it to people. My doctor has me on nasal sinus spray and a sinus pill, not working. Somedays I feel I am getting worse! I have not been to work in 5 weeks. I have even thought I had menegitis or Lyme disease. Feels like it is something else.

    Reply
    • May 16, 2017 at 2:41 am
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      It’s common to keep thinking that it is something else. There are interaction between the human balance system and our emotions that are not completely understood yet. It is normal for you to feel anxiety about this, but I strongly suggest that you do ask to see a specialist if you have any doubts. There are a wide range of strange symptoms associated with this inner ear disorder, and while most people don’t suffer them, there are a minority who seem to. Have you ever suffered from sea sickness, motion sickness, or car sickness before? I have often wondered if people who already have a predisposition to these conditions suffer more acutely from Labyrinthitis. It is just my opinion and I am not a medical professional.

      Reply
    • June 2, 2017 at 1:42 pm
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      I relate to all of this. How are you now?

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      • June 8, 2017 at 7:51 am
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        I am certainly better now. I will say that my balance is not the same as it used to be, but I have adapted for the most part and I can do most things easily enough. There are some days where I notice it more and the imbalance seems worse. I think this is related to a lack of sleep, having a cold, or feeling anxious and down. We are going on a cruise shortly, and I must admit to being a little concerned about both sea sickness and balance issues! I will need to take Stematil for the cruise I think.

        Reply
  • November 10, 2016 at 6:55 am
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    I have had this now for 7 months. It was hell! And recovery is never straight forward. Seems to be good days followed by bad ones. I now have constant pins and needles and also anxiety has flared up again. Also feel abit dizzy again in the evenings.

    Reply
      • May 19, 2017 at 3:51 am
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        Hello steve,

        It’s been about 13 months now! Pleased to say I’m about 100% most days now. I did a caloric test which showed 24% damage in my right ear. They suspect I have VN (vestibular neuritis). I started an anti depressant for anxiety as my ent believed it was anxiety holding me back, and after a month of starting it, I started having 100% days

        Reply
        • June 8, 2017 at 7:53 am
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          The links between our balance system and our moods and emotional centre is really not well understood. Labyrinthitis as we have all suffered here seems to take a toll and produces anxiety and some depression. Even the specialist I saw admitted that there seems to be a link, but it is not well understood.

          Reply
  • June 23, 2016 at 8:33 am
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    Hi Steve,
    Thank you for this blog
    I also have had some, but not all of the symptoms described approx 8 weeks.
    Previously 6 years ago I was diagnosed very quickly by a Dr I had Labyrinthitis. First attack caused unexpected fainting and very sick. Since April my face became numb and icy cold after walking in cold wind. From this I have been outer kilta since. My ears are blocked and pressure feeling. This time no Dr has an answer to why I have had these symptoms. ENT think I have had milder form of Labyrinthitis. Tests done have found nothing sinister they advise. Waiting for hearing test next week.
    All the best to you and all sufferers of Labyrinthitis.

    Reply
    • June 23, 2016 at 11:14 am
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      Hi Teresa. Thank you for visiting and commenting! I have come across a wide range of symptoms in talking to people online. The several doctors I have spoken to don’t even seem aware of the possible symptoms of long term Labyrinthitis, even if they accept that it can be a long term problem for a minority of sufferers. The ENT specialist I did talk to at length was more open to strange symptoms, but hadn’t even heard of some of them. I suspect he rarely comes across it as a long term issue. There are a few possibilities at work when it comes to some of the weirder symptoms: that the balance system is so little understood that any damage to it can affect other crucial areas of the system and cause odd symtoms that you describe; the anxiety and stress often caused by damage to the balance system results in a wide range of anxiety related symptoms. It may even be a combination of the two. What is clear is that the balance system and some of the mechanisms of Labyrinthits are just not well understood by science. Of course, try getting any doctor or specialist to admit that!!!
      I still have mild attacks even a few years on from the initial vertigo. They are mild and I can’t always be sure it is the inner ear damage, but my balance has not been the same since the Labyrinthitis, so at the very least it is just something I now have to manage indefinitely.
      Would like to hear how you get along if you have time 🙂

      Reply
      • June 23, 2016 at 9:14 pm
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        Thank you for your prompt reply. I will keep you updated once I know my hearing results. Your comments are true as I have found this myself. Hoping my email sent has and will be comfort to others with Labyrinthitis, they are not alone with these symptoms. Take care. Kindest regards.

        Reply
    • July 4, 2016 at 12:39 pm
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      Hi Steve
      Visit to ENT, No postive findings for my symptoms. I passed hearing test. All I know as proof. After walking in windy weather recently,I have a numb head and eye freezing cold face “I can feel”, ear block and pressure, cannot pop. All on my left side. ENT conclusion !! I have a form of Neuralgia. Mystery, never had any pain in my face for the 10 weeks of symptoms, which is one of the main affects I have read about.No wiser after many tests by ENT and Neurology Depts. Hope it goes away by itself. On no medication.

      Reply
      • July 5, 2016 at 3:12 am
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        Hi Teresa. Thanks for updating me. I passed the hearing test too when I saw the ENT. When I first suffered the vertigo, I had been out for some days prior in cold and very windy weather. I actually thought it was something to do with that at first, but the Dr said it was not. I had all sort sof weird symptoms after that bout. I had tingles in limbs, twitches in specific muscles, sinuses that felt full. Most of those symptoms disappeared and the ENT put it down to anxiety. I even had a sinus scan because I was so full and even had a little bit of blood in tissue from blowing every day, but there was nothing there at all apart from a little bit of swelling. I’ve read about numb feelings on the face from some people with Labs, but have not had it myself. Nor had the ENT heard of it. I think what they are suggesting is some form of nerve pain, and I guess anxiety can certainly cause that, but they are not willing to link it to the Labs. I think that their model of the human balance system is incomplete and that Labs and related disorders can cause a range of odd symptoms that they are only beginning to understand. It’s very easy to put things down to anxiety and stress without looking at other possibilities. Have you had a balance test yet?
        I can relate. I have not “been right” since the Labs started. Whether it is the Labs causing it or not, all I know is that lots of odd symptoms have been happening in th elast few years that seem completely unrelated. I have had multiple scans, doctors and specialist visits, a psych and even physiotherapy, but at best the symptoms just go away for a few months and then new ones begin.
        Stay in touch.

        All the best,
        Steve

        Reply
  • May 18, 2016 at 10:16 pm
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    Hi there well done for writing this. And thank you. I have only been in this nightmare for about 6 weeks and I’ve had nothing more than fake sympathy and anti-nausea tablets from the gp. At first I thought I was having horrible panic attacks but thanks to reading stories like yours I have taken so much comfort. Chiropractor tomorrow to see if they can help at all. I will not let this take over my life I will fight it in every way I can. Look forward to hearing how you got on. Fingers crossed!
    Maria

    Reply
    • May 25, 2016 at 2:43 am
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      Hi Maria. Thank you for takign the time to read and comment 🙂
      I understand. Unless someone has suffered the effects of Labyrinthitis, it is very difficult for them to understand much beyond feeling a bit dizzy. For most people the symptoms simply seem bizarre and unrelated, including many doctors who have only read through the text books. How did your visit to the Chiro go?
      I found that going to the Physiotherapist and having some massage done helped me to cope. But in all honesty, the symptoms that can arise from what seems like a fairly simple ear problem can be so diverse that it’s often hard to differentiate between what is real and what is not. This has led to quite a few people suggesting that it’s “all in my head”.
      My slightly unsteady walking is still with me even after over two years and I have simply learned to manage it. It is worse when I am tired or stressed it seems. But the worst thing for me has been the health anxiety that it has provoked over the last few years. I hope to hear from you about your own journey soon. Thanks again.

      Reply
  • March 28, 2016 at 1:42 am
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    Wow! I could have wrote this! How are you feeling now?

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    • March 28, 2016 at 3:39 am
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      Hi Leeann. Thank you. Well, it’s been a really long road so far, but all in all I’m feeling better. I must admit to still havign my zig zag walking and feeling unbalanced, but it’s manageable. I don’t think that will ever go away now. I think the ENT was right when he said that my inner ear could be permanently damaged. But if it’s just some slight feeling of being unbalanced rather than full on vertigo, then I guess I can deal with it 🙂 How are you? What is your story?

      Reply
  • January 6, 2016 at 2:45 pm
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    I can not wait for Part 2 This so far has been me word for word! It is so cruel! But like you I am not about to give up. I will do anything not to live like this. I have so much to do. Life is great and I am ready to get back into it. Thank you.

    Reply
    • January 6, 2016 at 3:39 pm
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      Thank you Kim. I really appreciate you taking the time to read and comment. It seems to be a reasonably common illness, but I’ve found that people in the medical field sound like they’re all reading from the same book. Even the ENT I saw was puzzled by some of the symptoms I described, and he’s supposed to know about it !
      Please don’t give up. I think the experience has a core of common symptoms, but it also affects different people differently outside of that common core. Have you suffered Labyrinthitis for long?

      Reply
  • January 5, 2016 at 7:46 pm
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    Holy cow, what a hand to be dealt. I like how you’re taking charge of your care, however. When you’ve got something like this, you pretty much have to drive hard to get the care you need.

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    • January 6, 2016 at 6:49 am
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      Thanks for reading Jim. I agree. No one else is going to care as much as you do about your health. That much I’ve learned!

      Reply
  • January 5, 2016 at 5:17 pm
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    I’ve been like this for 12 years, no nausea though but ALL the other symptoms, being pulled to the side, anxiety, depression, surreal feelings in my head, foggy brain, and so many more. Sometimes are worse than others, I have tried Epley maneuvers, Vrt exercises too. My hearing has been affected badly I have significant hearing loss too. My social life is non existent. I am 60 years old, female. Unless you experience this no one really understands. Look forward to reading part two. Don’t despair many recover fully, I’m just one who hasn’t.

    Reply
    • January 6, 2016 at 6:55 am
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      Hi Lottie. Thanks for sharing your experiences here. Have the VRT exercises helped you in any way? I could have had them, but opted not to go because I felt like I was getting better. It was that and the fact that I’d already spent so much money and time on doctors and specialists. I understand that it’s typically a short term illness for most, but people who have not suffered it do tend to question you and not understand how it has affected life. Even now, nearly 2 years after the first event, I find myself still with balance issues. Most doctors just look at you like you’re crazy because they think it’s either rare that long term damage happens, or that it’s just in your head. I’ve tried to explain that, yes, it’s both physical and psychological, so part of the problem is in your head! It causes anxiety for many people and even depression. The balance system and the way it interacts with the brain is not completely understood so I’ve learned to manage the puzzled looks from doctors who have never experienced it themselves.

      Reply
  • January 5, 2016 at 10:45 am
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    Steven, how well I remember when this started happening to you.
    How frightening and exhausting it was!
    I’ll leave further comments until Part 2.
    Love you,
    Cynthia •~♡

    Reply
    • January 6, 2016 at 3:41 pm
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      Thank you Cynthia. I think there are quite a number of people out there who suffer from this long term, but I’m not sure the medical profession is entirely across the whys and hows of it, and so much of it is put down to anxiety/depression. It’s frustrating to get the puzzled looks when they think you should be recovered.

      Reply

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