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  • Labrynthitis

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    Old 04-14-2015, 04:06 PM   #1
    bx904
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    Labrynthitis

    So i've never posted to any forums before but i'm hoping that I will get some responses with positive feedback and advice about dealing with this diagnosis. have been diagnosed with Labrynthitis.
    It all started around March 21. My roommate was complaining he wasn't feeling well that weekend and I felt that for a day or two I might have caught it too as I was sneezing more than usual and I felt like I had a slight fever. Either way, I didn't feel THAT sick and I didn't worry about it. The next morning though, I woke up and the room was spinning. I felt dizzy throughout the day and rested. The next day I felt completely fine. But over the course of the next week and a half after that, I would get these random dizzy spells that were accompanied with nausea. They would last a few minutes and then subside. It was't bothering me that much at this point but I thought I would go to the doctor anyways to make sure everything was fine. Doctor diagnosed me with Labs and told me it should subside within a few weeks. On April 3rd I thought I was having another dizzy spell and waited for it to pass, but it didn't. The following day or two after that I was dizzy with a lot of nausea although I never actually vomited. I went back to the doctor and they still said labs and gave me betahistine, which I don't think is really helping so i've stopped taking it. At this point I don't feel like the room is spinning or moving in a circular direction. It feels more like i'm on a boat and swaying. Also my ear rings occasionally for like 30 seconds and i've been feeling a lot of pressure. In the morning right after I wake up is when I seem to feel the best. I'll have better hours or even days where I feel like I'm recovering and then bad days that make me feel like i'm taking 5 steps back... I don't know whether to consider this my almost 2nd or almost 4th week with labs since the 24/7 symptoms didn't start till April 3rd.
    I struggle with anxiety when it comes to my health and something so foreign and unnerving such as this has taken me to a place I hate to be in. I've been resorting to the internet to look for some relief. I know I shouldn't be going online and I should trust my doctors and family that this will pass but I keep finding all these posts saying how this lasts for months or that it never goes away and I can't stand the thought of that.
    I don't want to be freaking out and I guess i'm just looking for some more reassurance and relief that this does go away and I will start feeling better soon.
    Thanks!

     
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    Old 05-01-2015, 06:46 PM   #2
    starlight294
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    Re: Labrynthitis

    How did you get diagnosed with Labrynitis,I had a head cold then all of a sudden I lost equilibrium while walking and have been off balance ever since had Brain Scan all clear throat ultra sound all clear now I am having a carotid ulta sound,I am so scared of this my ears ring burn and feel like they are pulling up into my skull

     
    Old 05-13-2015, 09:25 AM   #3
    qtsam11
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    Angry Re: Labrynthitis

    I'm only two weeks in and this is pure hell. I don't know how much more I can take and can't imagine this lasting months as many describe. Symptoms come on very suddenly and then they tease you by almost going away. I just started a new, very important job and I'm operating at about 50% so this is definitely threatening my career. Also I am supposed to fly out of the country on a very expensive trip that is already paid in full next week, and I'm pretty sure that won't happen. This is a life drain and it is extremely hard to stay positive. I am a 34 year old very healthy woman who has never had any problems.

    I was in a meeting at work and my left ear started ringing. Nothing alarming at all and it only lasted about 30 seconds. However right after, I started feeling dizzy, nauseous, and very disoriented. The disorientation was definitely the worst symptom cause it's terrifying. After about half an hour of this I had my husband come pick me up, although it took me an hour of sitting on the couch in the lobby before I felt stable enough to get up. I went home and started to feel slightly better. At first, I thought it was too much caffeine. I am not a caffeine drinker and had a decent amount that morning. But when symptoms returned that evening, I went to the ER. This was the first time I had ever been to the ER so that is how serious I felt it was. They did bloodwork and urinalysis and everything looked good so they rehydrated me and I went home. But I still felt the same. After sleep, I felt slightly better as in the vertigo had come down to a lightheadedness and the disorientation had come down to brain fog. The nausea was pretty much gone. So this might not sound that bad until you realize that this is how you will feel 24/7 for the foreseeable future and there is no relief.

    After two weeks, I have had 3 more cases of the vertigo that usually last half an hour or so. I've tried the Epley Maneuver, which did not help at all. Most of the time I just feel like my brain is being shaken within my skull. No headache, just the groggy brain fog. I read another blog where someone said it felt like a snowglobe being shaken and yup, that pretty much sums it up. Since I thought this could be related to caffeine, I went to an allergist to see if I had developed an allergy and coffee came back negative. I went to a neurologist who did a full workup, which didn't show symptoms of anything bad. For safety, I got an MRI with contrast and there was nothing there either. Finally, I went to an ENT who thought everything he can see looked good. I did a hearing test and fortunately did not lose hearing so he did not think it was Meniere's disease. They did an eardrum test to see if there was fluid in the middle ear, which was negative. So the result was that it was inner ear. I did not have any virus beforehand that I knew of, although it is linked to the Herpes/Chicken Pox/Shingles virus so that is all I can think of (cold sores are just the gift that keeps on giving). The neurologist prescribed meclizine, but that didn't seem to do anything for me.

    Some days are better than others. I had two good days in a row with minimal symptoms where I felt like I was 85% and then today I got Punk'd. I have a lot of trouble sleeping and, to be honest, I dread sleeping cause I don't know how I'll wake up and my symptoms seem to be worse in the morning. I've tried Melatonin, which didn't help. I'm the type who doesn't even like to take Advil so all the drugs have been interesting. A common side effect of this (an added bonus!) is developing anxiety. I've never had this before. I think this could be causing some of the symptoms, which in turn causes more anxiety, which in turn causes more symptoms...you get the idea. I've had a few panic attacks. I had my first Xanax (.25mg) which actually did help. So for the next few weeks or months I'll continue to put my life on hold, risking my career, not going on trips, etc. until this starts to go away. My ENT said I can go on a plane but if I feel like this there is no point. Curious if there are others who have any sort of home remedies or how to speed up healing. Anyone try the VRT and have success?

     
    Old 05-13-2015, 04:21 PM   #4
    starlight294
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    Re: Labrynthitis

    How Did they check your ears for fluid? I hope you did not have to swing around in a chair or have warm and cold water put in your ears .I will not do that I am too dizzy now

     
    Old 05-14-2015, 05:04 AM   #5
    qtsam11
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    Re: Labrynthitis

    No, they put this thing against the eardrum and the vibrations tell you if there is anything behind it.

     
    Old 05-14-2015, 04:50 PM   #6
    starlight294
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    Re: Labrynthitis

    Thank you for your reply ,

     
    Old 05-20-2015, 11:46 PM   #7
    Male38
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    Re: Labrynthitis

    Hi

    I was diagnosed with viral Labrynthitis earlier this week and totally understand how you feel.
    How are you feeling now, I hope your symptoms have improved.

    I currently have constant ringing in one ear and feel unsteady on my feet. I've taken beta histine for a couple of days but the unsteadiness now feels worse and my hearing is very muffled.

     
    Old 06-04-2015, 01:24 PM   #8
    emilylouise11
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    Re: Labrynthitis

    I have had labrynthitus now for 4 weeks, the dizzyness has gone just the few odd spells but i have serious eye troubles. I have constant flashing lights in my eyes and sharp pains. Me ears pop and i have headache like a band around my head. I go on holiday in 2 days and my anxiety is horrible im so scared i will be poorly when i am away. I have had optitions check my eyes and they say they are fine and the soctor keeps telling me that the way i feel is labrynthitus. I wish there was somthing that could make us feel ok

     
    Old 06-10-2015, 03:48 AM   #9
    imbalanceman
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    Cool Re: Labrynthitis

    I too suffered a bout of viral labrynthitis 15 months ago and it just wont go away. I had no colds or anything I was in best shape of my life and it started with just the odd bout of dizzy every few days. Many people at work had and were having the same issue.
    I tried stemitil for a month after seeing a GP, then referred after a month to be seen by ENT this took 7 months to happen! , had MRI, balance tests, hearing tests , bloods and all normal. This seems to be very common pattern yet they all remain clueless. I have been on amitriptyline for 6 months at low dosage just to please the docs as they say this illness can deplete serotonin levels.
    I was dizzy to begin with and ears full and felt pressure, pain around ears , nausea ,vomiting, imbalance feeling , chronic fatigue, eye focus issues, slight anxiety due to symptoms and a massive head slamming feeling when turning left as my left side was all that was affected.
    I tried VRT but this does not work for me either. I have 2 small children in my care so this has been the biggest struggle of my life so far and debilitating.
    I work using computers and can not focus and have bouts of stimuli affecting my pupils and causing more imbalance sensations. I have had to reduce my hours and losing money, Ive lost 3 stone but this seems to not bother anyone.
    So the ENT have washed there hands with me if you done show positive on any test they seem to not be able to help and start blaming it on physco issue.
    I went to neurologist who then said it was a functional neuro disorder and that my left side of brain has lost function and to see him soon to sort it out.
    Anyway upon returning he said nothing he can do and I need CBT therapy just like ENT and that I need to learn to live with it. This is complete crap and not acceptable but I need to jump through there hoops to please them once more.
    SO far I have filled in the questionnaire for the CBT and honestly I can answer every question as NO, just as I told them its not in my head. Bottom line they will treat you like its you causing this and so I raised a complaint and this still has not got me anywhere and ENT are refusing to see me or help me.
    So this time I went to another hospital privately who say I do have a balance issue going on but now its a case of who believes who?
    My symptoms I have are mainly my left eye, its not working properly and can feel this upon waking every morning, this gives me an imbalance feeling only on my left side and flueresent lighting and computer stimuli make this much worse, Im busy non stop daily from 8 -9pm before I get to sit down so my brain has enough time to compensate any loss but never does. I strongly believe I have suffered nerve damage as its like a chain from top of ear along to my eye is where I feel this and sometimes it makes my head feel like I have a weight in it pulling my head left. Any way Now everyone thinks im pyscho and will not help me. This is what this illness does to people and yet we get treated like a hypercondriact. Anyone else getting this treatment from NHS? I hope you are rid of this illness fast and sorry to put a damper on things but this is my experience with this and the day it goes im going to get soooo drunk.

     
    Old 08-11-2015, 03:33 AM   #10
    imbalanceman
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    Re: Labrynthitis

    So I had CBT and they laughed at me. I don't even make a score worthy of needing CBT Therapy, so again as I told the waste of space nuerologist who wouldn't listen to me and again has tried to send me to another shrink as he cant seem to get it through his head I have an inner ear disorder of some kind. THEY JUST DONT GET IT AND DONT LISTEN. Anyway I was put through by accident to the emergency eye department as I was just enquiring when my eye appt actually was, after explaining what was happening to me they said its an inner ear problem!! But hey not according to the ENT!!
    Had the optic nerve checked and was working fine but a huge difference in how bright things looked from my left eye to the right one. Again nothing he could do and sent on my way. I am waiting to see an Otologist but could die of old age waiting for this appt to happen.
    There seems to be no specialist out there capable of even giving me a diagnosis and its now been 18 months and ive spent money privately.
    Still have imbalance feeling on left side only all day from moment I wake. I can get illusions of movement from my eyes which in return contributes to the imbalance and my left eye when looking any direction feels stiffer to move and causes more imbalance feelings. What a dreadful illness this crap is.
    Maybe we should put a claim in to the NI contributions for a full refund as we are not receiving the care we are entiltiled to.
    Keep you all updated with each shafting I take.

     
    Old 10-02-2015, 04:32 PM   #11
    imbalanceman
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    Re: Labrynthitis

    So I finally went to see the otologist/balance specialist Ive got letters after my name cos im so clever etc!
    What a load of crap that was! Just as bad as the rest a complete waste of my time, an utter joke, So they ask, "how is your hearing" I reply "Fine I have no hearing loss" Well lets just do a hearing test!!! An explanation with detailed symptoms and even a drawing to should the exact part of my ear causing all the problems.
    Lets just not look at that and put it to one side.
    mmmmmmmmmmm what shall I do! He thinks.
    SO sends me out the room and calls me back in. stuffs a camera up my nose then hits me with it. The 2 year old MRI scan! Boooooooom!
    I cant possibly have a problem if this scan looks clear!
    Not even an educated guess. In all his pathetic career not once has he come across a person that is suffering an unbalanced sensation, with eye visual issues making me feel like I am moving when I am not. So sends me back to the GP again for the 18th time! I am not kidding either!
    Anyway the only way to move forward now is inner ear exploration. I am requesting this to be opened up and they will see the problem so my GP is writing to the hospital.
    I was asked about when it started, think back to what I was doing etc.
    I was never ill, no cold, no flu, just simply lifting heavy weights when I first became dizzy. I have issues when bending over or on all fours playing lego with the kids. lifting or pushing anything over 50kg it sends me out of control for several days after much worse than a normal day of crap. Looking to the left it really hurts my eye and becomes hard to see and feels like a tearing sensation.
    I am starting to think it may be a fistula which would certainly explain why my symptoms changed so much from dizzy,ear pain,nausea,tinitus,sickness,fullness of the left ear,vison problems,off balance feeling and a shocking head movement sensation. Is it possibly healing itself slowly? I still have just a few symptoms left but they are enough to drive me crazy and some days I feel like opening this up myself and then going to A&E, but I am sure I will just mess it up.
    So again if anyone has any suggestions or can offer any light on this I would greatly appreciate your input. If you are part of my hospital ENT team I wish this upon you all so you can see what our lives are like living with this, why you get away with treating us this way and using the old excuse your in the wrong department! But can not ever tell what the right department is.
    As you can tell I am at my wits end!

     
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