I had my appointment with the neurotologist today, and much to my surprise, neither of the doctors in neurotology had ever heard of the BrainPort, nor did they know what it did. If this is the latest advance in vestibular treatments, how come neither of these doctors has even heard of it?
This would me to one of two conclusions: either the BrainPort is not as great as its makers would have us believe, or both of these doctors aren’t keeping up on their reading about advances in treatments. But how am I, the patient, supposed to determine which is the case?
I’ve been using the BrainPort for about two weeks, and I haven’t really noticed any difference at all in my symptoms — does that mean the BrainPort doesn’t work?
It’s now been almost 2 weeks that I’ve been using the BrainPort, and I haven’t really noticed any difference so far. I’ve been sticking with the 20 minutes twice a day as prescribed by the physiotherapist, and have only missed the second session on a few days.
I certainly don’t feel any different after doing the BrainPort exercises (except for being a bit sleepy from keeping my eyes closed for 20 minutes), and I haven’t really noticed any improvement in my symptoms over the past few weeks.
Since I have a hard time keeping my eyes closed for 20 minutes (I get really bored), I’ve figured out that an episode of Seinfeld is about twenty minutes long without ads, the intro and closing credits (I’ve got them on DVD). So I listen to the episodes while I stand there with my eyes closed (I only turn the sound on, not the picture, so I’m not tempted to open my eyes to watch the show).
I got the BrainPort today, and I’m going to be trying it out for a month. Basically the BrainPort is a plastic box, just a bit bigger than the size of my hand, that has a cord attached to it on one end, which goes around your neck (leaving the BrainPort to hang and rest on your chest).
It has a long, flexible plastic protrubance on the other end with a square, gold-coloured set of electrodes at the end, which rest on your tongue. The front of the box has a button and a dial on it, which turn the device on and off, as well as regulate the level of electricity that flows from the electrodes to your tongue.
I’ve been instructed to use the BrainPort for 20 minutes twice a day, which I have to do in a ‘challenging balance position’ — which for me is standing heel to toe (like a tight-rope walker). It’s really hard on the legs and feet though, because you spend the 20 minutes swaying back and forth trying to keep your balance.
When using the BrainPort, it gives your tongue a little shock (nothing serious, it’s certainly not painful in any way) when you go off-centre. It’s supposed to somehow condition your tongue to understanding where your head is at in space. I’m going to try it out for the whole month, and I’ll report back on how it goes as the month progresses. I hope it works.
I went back to see the vestibular rehabilitation therapist, and they said there’s not really much noticeable improvement — so now we’re going to try to complete overload the vestibular system and see if it causes it to improve.
I’m still supposed to do the exercsises with the business card and moving my head horizontally back and forth, but now I’m also supposed to move my hand horiztonally back and forth in the opposite direction. It tends to make me feel a bit nasty.
I’ve also got to do what is essentially tight-rope walking with my eyes closed — just without the tight-rope (I do it across the floor in my apartment). I have a really hard time staying in a straight line, which the therapist says is normal with bilateral damage.
The last thing I have to do is stand on one foot while brushing my teeth (both in the morning and at night), which I also find tough. I’m hoping that between all these different exercises, we’ll start to some improvement. If not, then it’s going to be the BrainPort route for sure.
I haven’t been sleeping very well lately, and I’ve been under a great deal of stress (both work stress and just stressing about finances, the usual every day life kind of stuff). And in the past week, I’ve experienced something I’ve never experienced before — migraines.
I didn’t quite know what it was at first, just that my head hurt to the point where it felt like it was going to explode (it didn’t, in case you’re wondering). The onset of these headaches is quite sudden, and they tend to last for anywhere from an hour to a few hours.
I also often feel nauseous and off-balance (which makes me wonder if this has something to do with my busted vestibular system). I don’t know anything at all about migraines (since I never experienced them before), so I think I’ll have to read up on the potential causes.
I also wonder if it has to do with VRT — could the VRT exercises cause my brain to start compensating more and thus lead to headaches as my brain gets overloaded with too much to do?
Well, in the past week, I have to say I may have started feeling better. Notice I said may — because I’ve felt better in the short term before, and it’s not always stuck around. I’m hoping that this time I’ll feel better for longer.
I’m wondering if there’s anyone who has had any substantive improvement from VRT, and how long it’s taken them to feel better. I’ve heard that’s it around the 4-6 week mark that improvement is often shown.
It’s not that I don’t trust the therapist, it’s just that I wonder if there’s anyone out there who can back this up with their own experience. I’m a little worried about this for two reasons: the first that it’s been so long since my initial vestibular loss, and second that I’ve got a bilateral vestibular loss. If anyone reads this and feels like posting their own experience with VRT, I’d really appreciate it!
It’s now been about 3 weeks that I’ve been sticking with the vestibular rehabilitation therapy, and I haven’t noticed much of an improvement (but I’m still hopeful that things are going to get better).
The therapist said that not having any subjective improvement (i.e. me feeling better) after only 2 or 3 weeks is normal — that I shouldn’t really feel the effects of the VRT until about the fourth week.
The good news however, is that I have improved in one area. When I first went into the therapist, she asked me to read an eye chart, and then shook my head from side to side and asked me to read it again. Between the no-head-shaking and the head-shaking, I lost three lines (I had to go three lines up to be able to still read the letters).
After the first round of vestibular rehabilitation exercises that I got a little while ago, it was time for me to go back to the VRT clinic so they could check up on how the exercises were going. I saw a different therapist this time, who was just as friendly and helpful as my regular therapist.
I told her about some positional discomfort I have when lying down on my stomach, and she asked if we could try a few more tests with the goggles with the infrared camera. I never mind more tests, since I’m always hopeful it will provide more answers.
So we went through the head-shake tests again (where the therapist shakes your head and then asks you to look to the right and then to the left), and then I watched the videotaped results again.
Much to my surprise, the nystagmus (abnormal eye movements indicating a loss of vestibular function) was present on both sides — meaning that while my right ear is worse, my left ear’s vestibular system is likely also damaged.
So I just came back from the vestibular rehabilitation therapist, and we went over my first exercises today. Some of them made me feel pretty dizzy and nauseous, but she says that that’s a good thing.
So I basically have 3 exercises that I have to do 3 times per day. She said we’d move on to some more challenging exercises once these become easier.
The first exercise is to stand heel-to-toe in a doorway with my eyes closed (it’s harder than it sounds, but maybe just for me). I guess this is to retrain my brain to rely more on my feet for balance than just using my vestibular system.
The second is to look at a business card from arm’s length away while shaking my head faster and faster. This one made me particularly dizzy — but again, that’s supposedly a good sign for the potential for improvement.
I’ve often complained that I constantly feel like I’m falling or dropping when sitting still. It’s a terrible feeling, and it really drives me nuts. For me, the feeling comes and goes — it’s worse when I’m tired or hungry.
A case like Cheryl’s would normally be completely hopeless. But due to a specially-fitted construction hat that’s connected to her tongue (yes, you read that right, her tongue), she’s able to actually regain her sense of balance while wearing the hat.
