Intralabyrinthine Hemorrhage Information

Intralabyrinthine hemorrhage is a rare condition. Sudden sensorineural hearing loss (SSHL) as a complication of it is also rare. I’m asking my doctors how rare, so I can put numbers on this for other sufferers of the condition. Because it is rare, there is not much about this on the web, and what there is, is pretty darn scary. (Update: My neurologist tells me tens of people worldwide get what I have every year. Great. I’m in an exclusive club. If you’re in that club, welcome! I’m delighted that a few of you have left comments.)

For anyone, if you are suffering any hearing loss of any sort, stop reading and go to an Emergency Room right now. The doctors may be able to save your hearing if you go in the first 24-48 hours. Even if it’s later, go now. This page will still be here when you return.

My condition is idiopathic. That means there is no underlying cause. I have no tumors, did not use drugs, do not have other conditions that would lead to the condition. Idiopathic does not mean “idiotic”; it means “we don’t know what caused it.”

I have oscillopsia, which means the world goes up and down when I move my head up and down. It also means that when I move my head sideways, the world moves sideways. My head moves when I eat crunchy things, such as red cabbage, or when I turn my head to look for traffic while driving. I have nystagmus, involuntary rapid eye movements, when I try to hold my eyes to the left. (My right ear is the damaged ear.)

If you also have this condition, or if you have been recently diagnosed with an idiopathic intralabyrinthine hemorrhage (inner ear hemorrhage), and you also have vertigo, here are the steps I took:

  1. Get your vertigo under control. You can’t do anything if the world is spinning. I took Meclizine.
  2. Make sure you get an accurate diagnosis. Meniere’s Disease is different from this. You need a good ENT, and possibly a good oto-neurologist to tell the difference.
  3. Go for vestibular therapy. You will learn the difference between BPPV (which is when the crystals fall out of your ears); the whirling vertigo; nystagmus; and oscillopsia; and how to manage each of them. They all require different coping mechanisms. Your vestibular therapist can request more sessions from your health plan if you have a stubborn case of vertigo, as I do. Ask for more than the initial six sessions. (In the US, you get six sessions.)
  4. I asked my ENT for balance tests. I went to the Mass Eye and Ear Vestibular lab. They have a very cool set of tests. The technicians were especially helpful, because my nystagmus went nuts during the testing. They helped me find some coping mechanisms I use now.
  5. Decide when you are disabled. I should have started using a cane much earlier to prevent falls. I would have kept more teeth.
  6. Expect mood swings. You had your previous life. Now you have a different one.
  7. I am finding significant relief on Topamax. (I take a generic.) It allows me to go to the gym and ballroom dance. I had to take 175 mg twice a day before approaching anything like normalcy, and that’s still not so normal. Head-turning is still an issue.
  8. I watch out for high sodium and avoid MSG like the plague.
  9. I low carb for general weight loss and health. I avoid spiking my sugar because I suspect it might cause a vertigo attack.

I have pre-cursors to vertigo attacks that I can fend off with fixed gaze and significant amounts of water. I work hard at staying hydrated.

Flying is no problem because I don’t have middle ear problems. Driving is an issue because no one is fixing the damn potholes. All I do is go up and down, aggravating my oscillopsia. If I walk slowly enough with my cane, I can keep my head still, which is great for my oscillopsia.

Note: I am a patient. I am not an MD. I am not a researcher. If there are enough of us, I can set up a forum for us to discuss this. If you also suffer from this condition, please contact me, johanna at createadaptablelife dot com.

15 thoughts on “Intralabyrinthine Hemorrhage Information

  1. Rich

    I had the same thing due to the anticoagulant drug Warfarin
    for a DVT in my leg. This is only place that i found where someone else had what i had. Had a vestibular nerve section to help with the vertigo but i still have balance problems.
    Just thought i would let you know that your not alone.
    Rich

  2. Phil

    Hi, I have the same problem, deaf in the left ear and have balance issues. Mine has been caused by surgery to remove a left cerebellopontine angle meningioma. My surgeon tells me it will resolve itself “one fine sunny day” but I cant wait for that day so I am doing vestibular exercises which have been provided by the physio dept at the hospital. The condition is very annoying and I am hoping that the exercises will help resolve the balance issues.

  3. Denise Copening

    Johanna – I have admired your work for many years. Your insights on hiring technical people and willingness to pragmatically discuss costs of QA have set you apart from the crowd of so-called experts as a bonafied expert continually adding to your knowledgebase and willingly sharing what you know. So sorry to hear about your complicated and potentially debilitating medical condition. What vim and vigor you are displaying by facing this courageously and analytically. By sharing this with the goal of improving your condition and others who may suffer from it, you are showing a high form of selflessness. Thanks you so much for being so uplifting to us all.

    1. johanna Post author

      Denise, thank you very much.

      I’m not so sure I’m being selfless here. In fact, writing about it helps me a lot. If it helps others too, that’s great. I suspect there are more of us than my doctors admit. Maybe they didn’t start with idiopathic inner ear hemorrhages, but if they have oscillopsia and nystagmus that’s not managed well with meds, this is the right place.

      My lessons are applicable to many people, and that’s why I write. It sounds strange, but if I can take my mind off my immediate issues and go to how I manage my life, I find comfort in that. It reminds me to keep going. It looks strange when I write it down, so I bet it does sound strange! But it helps, so I’ll keep going.

  4. Susanne Boeckermann

    I woke up with vertigo 3 weeks ago and have since then lost my hearing in my right ear. My MRI shows something in my right inner ear but the doctors can’t identify what it is. A tumor or blood? After reading this, I am sure it is blood. All my symptoms are like yours, including the constant thirst (my doc thought that was unrelated) I am suppose to get a steroid shot in the ear this week. Have you had one and did it do any good? They tell me if it is hemorrhaging, it will fix itself in a few months. Did yours? Did you get your hearing back? I have seen all the professionals possible without getting any answers. This is the first time in 3 weeks that I feel like I am getting somewhere!

    1. johanna Post author

      Susanne, I took prednisone. My ENT told me that prednisone was the only possibility for bring my hearing back. No, it did not work. Being deaf in one ear is socially awkward. I have tinnitus also, which is manageable (for me).

      I did have a steroid shot in my right ear a few years ago. I wrote about it in Making Difficult Choices.

      My hemorrhage was gone in about 9 months. I have permanent dizziness, no vestibular ocular reflex, SSD (single sided deafness), and permanent vertigo. I have oscillopsia, from the blowing out of my right ear.

      My ENT told me that the sooner you take prednisone, the more possibility of getting your hearing back. If it’s been 3 weeks, you might still have a shot. I would advocate for oral prednisone right away. The steroid injections made things better over time. I was much worse right after the first one.

      Best wishes to you. I wouldn’t wish an inner ear hemorrhage on anyone. On the other hand, being deaf is one ear is not a problem all the time. My husband’s snoring never wakes me up!

  5. David Chapman

    I was just diagnosed with this disorder. Thought it was virus but after MRI confirmed bleedin in inner ear was cause. Deaf in left hearwith Labyrinth titis.
    Feels like walking in drunken stupor foggy head. I see this is rare. I am using warfarin for afib so the bleed may have been exacerbated by that. ENT said no further treatment required. Completing steroids this week. Will I be able to drive is a major concern.
    Any prognosis from others that may have this experience?
    I’m in VRT now.

    1. johanna Post author

      David, I am driving. I find that driving tires me. I can drive during the day for a couple of hours at a time. I can drive at night for about an hour. Good that you are doing vestibular rehab.

      The vestibular rehab gave me some coping mechanisms but didn’t clear my problems because I have a motor neuron disease (not diagnosed until 2014). You might find that the therapy helps your brain adapt faster. A relative’s in-law also had the hemorrhage. She did not lose her hearing but still has some residual dizziness. I *think* your recovery depends on how much of your inner ear still works, how well you can adapt, and how you manage your vertigo.

      My best wishes to you.

    2. Susanne Boeckermann

      I was able to drive after about 4 weeks. My brain just adjusted to my new life (with the help of some physical therapy). I initially lost all my hearing in my right ear, but thanks to steroid treatments was able to get some back. I have a 100% vestibular weakness in that ear, which at first caused me to walk like a drunk sailor but now after 2 1/2 years hardly slows me down anymore. I have some limitations, but nothing like those first few weeks that were pure hell. Hang in there, it’s hard because there is so very little information out there and the doctors are clueless, but while your life will never be the same it will improve. The brain will eventually adjust. Steroids is sadly the only help and I have found hydration is important. My doctor told me a low salt diet may help, but I found it made no difference. You’ll get used to the tinnitus, but when it sounds like a helicopter is in your ear it may be because the inner ear is bleeding again and you need more steroids (I had a relapse 1 1/2 years after the original hemorrhage) Good luck!

  6. Lori White

    Thanks for this blog. I had a hemorrhage in my right ear after having a C2 ablation on my LEFT side and somehow my nerves went haywire and unfortunately I was misdiagnosed with an ear infection at the ER (idiots, I had no bacteria and completely normal white count), but my hearing was muffled and I couldn’t walk properly. Fast forward to 3 weeks later, and I saw a neuro-otologist and she did a lengthy hearing test (lost the middle ear high frequency hearing) and then the balance test and I have ZERO balance in my right ear. So they did an MRI and I had an Intra Labyrinthine Hemorrhage. She did do two shots in my ear which helped the hearing but my balance is shot. So I’m going for vestibular rehab twice a week. The hardest part for me is the eye/ear issue. It makes me so dizzy and nauseous and we don’t know how long it’s going to take to trick my brain into bringing the left side to help the right side. And of course, I can’t walk straight, can’t drive and feel totally isolated. It’s pretty damn awful, and I’m used to awful after multiple brain surgeries. So thank you for letting me know there are others that have this too. It’s comforting so thank you for letting me share my story. Lori

    1. johanna Post author

      Lori, Good for you for insisting on a real diagnosis and then going for vestibular therapy. Yes, I suspect you have my form of vertigo, oscillopsia. I have a theory about *me*, which might not work for you. I think my eye muscles spasm, trying to get the VOR (vestibular ocular reflex) back into sync. That means that until we could calm my eye muscles, I couldn’t manage my vertigo. I take a muscle relaxant, which has its own set of issues. One thing you might consider: some form of assistive device to help you walk. I went from a cane to a rollator all the time now. I walk much better and can exercise by walking. Instead of walking into walls, or walking backward or sideways when I want to go forward.

      I decided to call myself the Queen of Assistive Devices instead of Lurch. I like QAD much better. Happy to share that title with you. Good luck.

  7. Susanne Boeckermann

    It’s been over 3 years since my life was turned upside down by this, hang in there it does get better! Your brain will adjust, the therapy sessions will help, as will time. And I too am very thankful for this blog and the info that no doc had.

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