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Some sort of Vistibular disorder

Posted , 6 users are following.

Lockerby
Lockerby

Hello everyone, my name is Joshua. Since the beginning of February this year I have been dealing with a horrible case of what an urgent care doc told me he thinks is labyrinthitis. It's been absolutely terrible. I have seen 4 or 5 ER doctors, an urgent care doctor (the one who told me I have lab) and a nurologist. (Who also thinks it's something to do with my ear due to involuntary eye movements during an eye test) I've had fluids pumped in me, I've tried 2 courses of antibiotics, (z pak) and prednisone (which gave me a HORRIBLE psychological reaction) I found the only thing that helps when I am in a really bad state is ativan. Which I don't like to take because it hurts the healing process. It's been a rough road with this disorder. It's hard to live my life. I lost my job, my girlfriends pregnant, and some days I am so depersonalized that the only things I can do is either have a panic attack or try to sleep with horrible feelings of anxiety and dizziness. Let me tell you those days are not very fun. I've noticed at the anxiety and dizziness gets worse, as soon as the sun goes down is like the brain fog drops to rest for the night and is hard to see. Oh, my dizziness isn't normal dizziness, not like vertigo at least.. It's definitely different. I feel as if I have pressure in my head, my vision gets blurry and disoriented, my ear rings like crazy, I feel unbalanced, disoriented, the world isn't spinning but it feels like my brain is. There is no actual visual movement per say. I've noticed that some nights watching tv makes it worse, my laptop makes it worse if it's a white screen, concentrating on my phone isn't bad, it all depends on the day. I've managed after over 2 months to get myself an ENT appointment set for tomorrow YAY! Although I am terrified to find out exactly what's going on and so nervous about getting bad news.. all I can do is pray. I can't take much more of this, it's either a day of being dizzy and anxious, a day where I am myself and I feel like my old self again to an extent, or a day or days of sheer terror of depersonalization, Anxiety, panic attacks, and depression. When I get to feeling like that, nothing feels real and I have dark horrible thoughts of going crazy or just wanting to be dead instead of dealing with these feelings because they are almost constant. I've had anxietybefore and was always able to calm myself down, yet with this sickness is almost impossible because you have the consistent feeling of feeling off and disoriented. Please, has anyone else dealt with this before? Am I going crazy? This literally is making me feel like I'm going insane. sad

1 like, 12 replies

12 Replies

  • marion50354
    marion50354 Lockerby

    Posted

    I feel for you; this sounds absolutely awful. However, I think the ENT doctor is the most important one. The Urgent Care and Emergency docs are not specialists in this. I have been to an ENT (otalarygologist) who gave me tests about position, motion, balance, hearing. Now he's sending me tomorrow for Vestibular exercises. Also, I've been doing the one exercise recommended--the Epley Maneuver--every day for 7 weeks. I am almost cured. But since I've had this vertigo before, the exercises are to teach me how to get rid of it the next time. And, of course, to rid me of the last bit of this. I didn't have extreme anxiety and depression with mine--just the awful balance dizziness and spin. Still, you should be hopeful to be seeing the ENT.
    • Lockerby
      Lockerby marion50354

      Posted

      I appreciate your respond, yeah it could just be me with the anxiety, because anything that alters my mind in an uncomfortable way causes me to panic and have anxiety. I am really hoping that this ent doc can help me get rid of this.
  • Terry6872737
    Terry6872737 Lockerby

    Posted

    I have been where you are.  It took me 7 months to begin to feel that I was making any progress.  I felt many times like I was going crazy and couldn't stand to think about another day of the misery.  If it is labrynthitis or vestibular neuritis you should be on some vestibular exercises by now.  An ENT is a good place to start but, the best doctor for this, if it is in fact an inner ear issue, is a Neurotologist or Otoneurologist.  They special in only inner ear issues.  There are certain tests that you need to have to confirm the diagnosis, namely and ENG.  Have you had an MRI?  I remember some of your postings early on for you but, cannot remember what you have had test wise.  The only difference in labryhthitis and vestibular neuritis is that Labs involves hearing loss, even temporary.  Seems like I remember that you are out west in the US.

    You need to get the test done and get something to help with the anxiety that will not impact the brain's ability to compensate.  I was prscribed Gabapentin when I first began my journey 14 months ago.  I am finally nearing 100% recovery, most days around 95%.

    The anxiety fuels the fire created by the Labs or VN.  Best of luck as you search for answers. 

  • Terry6872737
    Terry6872737 Lockerby

    Posted

    One other question, have you ever had migranes?
    • Lockerby
      Lockerby Terry6872737

      Posted

      I don't think I've had migraines, not ones that are noticeable at least. I have not had an MRI yet, I've had cat scans, and a EEG. Those both came came back good. The anxiety is horrible and ativan is the only thing I've noticed that remotely calms my anxiety down. Did your anxiety or dizziness ever get worse at night? Yes I am out in Arizona. This is the first time seeing an ENT. I've been pushing and pushing. I also have an appointment with a lady that specializes in dizziness and balance on the 28th. I just hour and pray that I can get this resolved and get back to the normal new and support my new family. Thanks for your reply back!
    • leona18728
      leona18728 Lockerby

      Posted

      Hi I really feel for you, It sounds you have several issues all at once which is making your conditions worse,

      First- are you being treated for your depression and anxiety ?

      This needs to be dealt with separately from your physical symptoms,

      Have you tried CBT for this and how long have you suffered with mental health problems,

      Second-I'm not taking away how your feeling with your dizziness for I know all to well about dizziness, I've crawled along the floor vomiting and laying on my back with my arms and legs in the air desperately trying to grab onto something because to me I was falling and falling with no recognition I was on the floor going nowhere,

      I lost 60% of my hearing from these attacks, and live in fear most days waiting for it to raise its ugly head again,

      But on the positive side I take each day as it comes,

      I still work full time and avoid any motion moving ie fairgrounds loud music crowded places, busy noisy places, Eat regularly and never get over tiered,

      You have a ENT apt write everything down so you have everything to hand,

      On the positive you have a baby on the way, you have time to sort out these two separate issues and get them under control to enjoy being a father.

      Thoughts are with you.

  • arwen1972
    arwen1972 Lockerby

    Posted

    I wish you well for your ENT appointment. I'm so sorry to hear that you are going through so much anxiety. What treatment have you had for that, other than Ativan?
  • ava47638
    ava47638 Lockerby

    Posted

    Hi Joshua,

    I'm the same. I've had this now for just over two weeks now and I sometimes freak out about it but then try to remember that it's 'Labrinthitis' which will go eventually! I felt as though I was starting to get a lot better last week then Sunday & Monday were awful. Not only dizzy blurry spells but insomnia and major night sweats. I am terrified about work because I told them I would be back on Monday after feeling so much better the late end of last week. A Doctor is calling me today to possibly re-arrange an appointment or at least give me some advice which I'll post when they do. The tablets work to some extent, but mainly make me feel hungover drowsy and out of it. The only thing that I like about them is that the anxiety is a lot less and I can finically sleep..they do feet rid of nausea too. I agree about the screens, sometimes they're fine to look at then other times I cannot really see much at all. This is what my job entails as well as using a headset! So worried about work! I said I'd be back tomorrow but the last two days were horrendous.

  • ava47638
    ava47638 Lockerby

    Posted

    joshua,

    You're not going crazy. This is how we all Feel and it's difficult to understand that it's not something more serious. Good luck at the docs and I'm sure it'll all be fine. Just rest and try and stay positive. At least we know it's something that we can get over

  • Lockerby
    Lockerby

    Posted

    Alright so, I went to the ENT and he looked in my ears, did a sound check with some metal fork, and listened to my story. Herold me right off that it's not labyrinthitis and scheduled me for a hearing test. I am also waiting on my MRI scheduling. I really want this resolved but I see that it's going to take some time. I pray it's not meniers disease or anything life long or very dangerous. I'm sure it's just my anxiety working it's self up.
    • Terry6872737
      Terry6872737 Lockerby

      Posted

      Really sounds like Vestibular Neuritis.  The only difference in it and Labrynthitis is with Labs there is a loss of hearing.  VRT will help to improve the issues if it is VN.
    • Lockerby
      Lockerby Terry6872737

      Posted

      That's the thing, my left ear has tiny bit of hearing loss I guess. It is a tad bit muffled. BUT when he did that semi sound test with the metal fork it was significantly louder in my bad ear. I don't know.. I will get these tests done and see what's up. I still have an appointment with the other specialist in the 28th. today has been fairly decent though so no complaints. It could be SO much worse. I hope everyone is having a good day!
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