Bilateral Vestibular Hypofunction Update

Other than occasional wobbling when the atmospheric pressure changes or when I crash into bushes and trees when going downhill on uneven footing at night with only a flashlight, I’ve been able to pretty much ignore any remaining problems with my bilateral vestibular hypofunction (BVH) issue. (Ok, the bush, bush, tree, and bush incident was kinda difficult to ignore.) It may never completely go away, but as long as I keep up with my treatment, it won’t interfere much with my daily activities (other than ice skating… that was terrifying and I have no desire to ever attempt that again).

I do want to share what I’ve learned and what I’ve found helpful, because finding useful information online was more of a pain in the ass than I expected. Of all the websites out there, this is the the one I recommend:

It was designed for patients who were referred to Chicago Dizziness and Hearing for vestibular therapy (whoever and whatever they are). I recommend it because it matches my treatment, which made a HUGE difference in my quality of life, and it explains a few things that I forgot to ask about during my therapy sessions. It has also been a great reference now that I’m supposed to maintain the exercises on my own.

Actually, before I go any further, I do want to point out that there was one other piece of information I located online that made a difference for me. It was one that mentioned that untreated vestibular symptoms can make you feel like you are losing your mind. This is because the brain is going nuts trying to compensate for the lack of the ability to balance and that is enough to start cutting into other things your brain normally handles. The ear doctor never mentioned any of this and so I seriously thought he had no idea of what the real issue was. Since these balance problems can be the sign of a serious health issue, I was frantic. The website reassured me that he DID know what he was doing–he just wasn’t very good at explaining any of it.

But I was lucky. I was assigned to a physical therapist who sat me down first thing and explained what was going on–how it affected my brain, eyes, and balance–and what I needed to do to fix it. If the doctor had shared any of this information, there would have been a hell of a lot less stress while we were getting everything sorted out.

While it’s mostly gone, there are days where it suddenly appears and throws everything off again. But because I do try to keep an eye on my balance, it doesn’t get very far out of whack before I’m able to reign it in.

I still have an eye-chart with one of the letters highlighted on my entertainment center at home for those days when the weather changes enough to cause problems. While it helps with my balance, it really rocks the oscillopsia. What’s oscillopsia? That’s where the world bounces every time you move your head. Even barely shifting triggers it. Drastic changes in the weather are sometimes enough to start it up again. Here’s a link to a video that’ll show you what it feels like, although the motion can shift in more directions than the clip shows. Warning, it may take a while for this to load.

I also keep 3″ foam yoga blocks around to balance on any time I start feeling a bit off. Look for the cheap ones scince anything sold for yoga purposes can get pricey. I grabbed two at $5 a piece and each block is the perfect size for one foot. I even keep one at work.

Right now I’m working on getting back into shape. I’m getting up at 5:30 am to use Steve’s treadmill a few times a week (up to a half mile at 3.5 mph with a little jogging thrown in–ok, very little), and I also started strength training on alternate days (I have NEVER been in this much stretchy-muscle kind of pain before. But then again, I’ve never been this out of shape before. You should have seen how few reps I was able to do. It was a combination of discouraging AND motivating).

What does walking/jogging and strength training have to do with vestibular rehabilitation? A lot. Just jogging in a straight line can be tough. Walking isn’t bad with enough light, but speeding it up makes me start wobbling a bit. Cranking up the incline on the treadmill helps out with the wobble for some odd reason. Strength training is mostly to protect my bones. I’m getting older and as a female, this is a bad time to lose muscle mass.

Who knows? Maybe getting into shape will improved my BVH symptoms even more. Certainly can’t make it any worse.

Bilateral Vestibular Hypofunction

I’m going in once a week for vestibular rehabilitation therapy (VRT) now. Today was brutal. Lots of balancing exercises with head movements that weren’t too bad with my eyes open, but almost impossible once I closed my eyes.

It turns out I’m dealing with bilateral vestibular hypofunction, which means my vestibular system (inner ears) aren’t working in terms of balance because my brain stopped trusting the information it was sending back in late January/early February for some reason (they think it was probably because of my temporary bout with BPPV).  Since it wasn’t being used much anymore, my vestibular system kinda stopped working (or is barely working), and by early March my brain was overcompensating so much to make up for the lack of information from my  inner ears that it started screwing with my cognitive functions, which in turn triggered short term memory loss, confusion, panic, and mental and physical exhaustion. So I wasn’t going nuts – but it would have been nice to have had this explained earlier (my Doctor didn’t really tell me anything other than my MRI was fine and I needed to go to physical therapy.  My therapist, on the other hand, got my medical records and explained everything that was happening to me as well as what we were going to do to fix it.  She rocks!)

The VRT forces my vestibular system to function again, my brain to relearn how to read the information it’s being sent, as well as coordinating my eye movement in relation to my head movement (that’s to fix the oscillopsia, which is when everything I see bounces up and down or side to side with head movement, walking, or when I hit a bump while driving. It’s one of the symptoms of  vestibular hypofunction and it’s why I hate driving so much–‘specially at night.)

Besides the VRT, I have exercises that I’m supposed to do at home every day that coordinate head movement with eye movement, and “balance tasks for vestibular system adaptation.”  All this really means is that I shake my head in different directions while trying to focus on a letter on an eye chart, and do balance exercises with my eyes open and then closed.  It’s also a lot harder than I expected.  Sadly I could have done all this about three months ago without even thinking about it – while now I have trouble standing up straight with my eyes closed.

My physical therapist also recommended using our Wii Fit board for additional balance exercises, and said that yard work is a very good form of therapy too.  I wonder how painting walls and installing hardwood floors ranks as therapy?