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:
- Get your vertigo under control. You can’t do anything if the world is spinning. I took Meclizine.
- 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.
- 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.)
- 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.
- Decide when you are disabled. I should have started using a cane much earlier to prevent falls. I would have kept more teeth.
- Expect mood swings. You had your previous life. Now you have a different one.
- 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.
- I watch out for high sodium and avoid MSG like the plague.
- 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.