As I said in my last post, I took a great vacation, and was able to unwind for a few days. I felt tremendously better (I did have my usual daily dizziness, but it was actually much better than usual). The lack of work-related stress really seemed to have a positive impact on how I felt.

I find exercise has the same stress-relieving effect — and it usually lasts for several hours after I exercise. And alcohol, while it certainly relieves stress in the short term, actually makes me feel more stressed in the longer term.

So while alcohol may be a quick fix for stress, it has a negative cumulative effect, and can often leave you feeling more stressed later in the day or the next day. Not to mention that alcohol is usually a motivation-killer as well.

As I’ve told myself many times, I need to avoid alcohol more, eat better and exercise more regularly (good advice for anyone, balance disorder or not). But for me (and anyone else with balance issues), the effects of not doing these things are not just felt in 10 or 20 years, but instead almost immediately.

So I’ve decided to extend this weekend, and take Monday and Tuesday off as well. I’m planning on traveling somewhere (it’s noon on Saturday, and I still haven’t decided where yet, I think it’ll be fun to just get in the car and go somewhere).

I’m looking forward to this much-needed break, and I’m hoping that I’ll come back rested (and less dizzy!). As I said in my last post, I’ve got my appointment with the new neurotologist at the end of the month (which I’m feeling hopeful about), so I’m hoping I can allow myself to feel a bit better before then!

On a side note, I did only 20 minutes of biking yesterday, and felt absolutely terrific after. I didn’t feel great while doing it, but for several hours afterwards, I thought: why don’t I do this all the time? I guess you can never really go wrong with getting more exercise.

I had another visit to the neurotologist (which I mentioned last time) — and I asked to have VEMP testing done. While the testing wasn’t much help (since it came back normal), I decided to ask the woman doing the testing if she knew of a good neurotologist.

She suggested one of two doctors, both of whom I haven’t seen before. They came highly recommended from her, so I’m starting to think it’s time to go and get a second opinion about what’s happening with my balance issues.

I was also taking a diuretic for a while (several weeks), which seemed to make me feel worse than I already did. While the neurotologist suggested eventually doubling the dosage of the diuretic (he prescribed it since he thought I might have Meniere’s, and it would rid my inner ear of any excess fluids), I had to stop taking it because it made me feel that bad.

I didn’t really realize how much even a small dosage of a diuretic dehydrates you — I was drinking a ton of water every day, but I still constantly felt nauseous and dehydrated. Not to mention that my balance problems were not any better when taking the diuretic.

Now that I’ve also concluded my experience with vestibular rehabilitation therapy, I’m not sure what the next steps are to me feeling better. Both the neurotologist and the vestibular rehabilitation therapist told me that they think there’s really not much they can do for me at this point.

While I know she meant for this to give me some hope, the therapist’s suggestion that I would see “significant technology improvements” in my lifetime which may improve my symptoms actually had the opposite effect. It made me feel like there really wasn’t much hope for feeling better now, which is kind of a tough pill to swallow.

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?

When I got the device, I wondered how there would be any way to tell whether the BrainPort was actually causing improvements, or if it was just standing there for 20 minutes with your eyes closed (which you’re supposed to do in a ‘challenging’ position, thereby sort of acting as a vestibular rehabilitation exercise).

Not to mention that the BrainPort device itself costs $10 000 — and that it’s not covered by insurance. I’m going to see if I can dig up a bit of research on the device (hopefully something that hasn’t been done by the company — I’ll post anything that I find).

On another note, the doctor suggested I try out a diuretic medication for 3 months, in order to eleminate the possibility of my condition actually being vestibular Meniere’s disease. While I’m doubtful that that’s what it is (and I think he’s doubtful as well), I’ll give it a shot.

I’m also going to have the VEMP testing done, just to see if there’s anything that comes out of it. I expected a bit more pushback from the doctor over getting this test done, but he seemed fine with it. I’m not sure when exactly they’re going to get back to me, but hopefully it’ll be soon — I’d always rather know the results as soon as I can.

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).

The physiotherapist says I should stick with the BrainPort for another week or two, and just see how it goes. As I get to try it out for free, I don’t have any problem sticking with it for another few weeks just to see how it goes.

Sometimes I feel like I feel better, but I’m never sure what exactly leads to that (obviously, things like more sleep, eating regularly, exercise and avoiding fatty foods and alcohol make me feel better — but those things usually make everyone feel better). So I can’t really attribute anything definite to the BrainPort.

I’ve got another neurotologist appointment on Wedsnesday, and I’m going to bring up VEMP testing, since I’ve never had it done. While I’m anticipating that the doctor won’t be too keen on it, I’m going to push for it, since I’d rather have as much information as possible. If anyone has any experiences with VEMP testing, I’d love to hear it.

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’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 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!

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).

We tried the same test again last time, and I now only need to go up one line. She said it’s possible she just caught me on a good day, so we won’t know for sure until I go in again, but it may be some kind of sign of improvement.

This is what the therapist described as an ‘objective improvement’ — while I may not feel any better, I still show improved abilities when it comes to how my vestibular system is functioning.

She also let me know that if none if this works, we may to resort to the BrainPort balance device (I embedded a video of the device at work in a previous post) — which connects to your tongue and you have to use for 20 minutes every day (it’s also $10 000, which is far more than I can really afford).

Let’s hope the VRT works.