Ask the Family

Question: Has anyone with brain stem or cerebellum involvement experienced trouble traveling on winding, mountain roads? I know that I do. In fact, just this weekend I was on Emerald Bay Road in California, which actually has hairpin turns. That road can make me very dizzy and ill.

I was surprised that my companions in the car seemed irritated with me, when I asked them if they could please slow down. Perhaps my companions had a lack of understanding of my condition.

Is this a problem for anyone else. And, if so, what have you found that helps to relieve the dizziness? -- R.M., California

Answer(1): I have lived and worked in the Himalayas for 31 years and find that , although I have VHL, it is more a matter of acclimatisation. If you do travel on winding roads often and have to, the dizziness adjusts. Even people without VHL or cerebellar/spinal involvement react quite violently to our roads here-they’re all hairpin in the Himalayas and the drops between hairpin and hairpin are astounding. I once had a friend from California stay and we took her to a small hill station -- small hills by our standards, anyway -- and she went into a substantial hysterical fit.

Depending upon the degree of the slope, the spatial variation between the point you last left and the one you’re going to, the amount of terrain within your vision (which in any case has to adjust rather rapidly too to the ups and downs) and so on, giddiness and dizziness are not unusual in people not used to mountain roads. Even people who are react have become accustomed, may react badly again when there’s a long gap between excursions. The person driving doesn’t seem to react so strongly because their focus is adjusted to the stretch of road in front.

There’s a big difference between being in a vehicle and walking, climbing: the latter being normal functions of a mammal’s body, sitting on top of four wheels and rolling up and down is not. Lots of things happen physiologically when you move up and down mountain roads, and they’re not all caused by VHL. The effects of your VHL issues might make it worse. She could try getting out of the car and walking up an incline and down again at her own pace. If that doesn’t make her feel dizzy and giddy, then it’s probably for other reasons. I’m not an expert, just learned a little by doing. Just thought this might be helpful. -- Greta R., Nepal

Answer(2): I have this problem too, resulting from brain stem surgery years ago. If you have the opportunity to be riding in a similar area again -- and obviously are a passenger and not a driver! -- see how you feel if you close your eyes before the winding starts. Before is a key word, as it may be beneficial if you do not even see the beginning of the winding. In my case, I am also bothered by the downward curve of even minor slopes in the road. If this trick eliminates the problem, you may be able to achieve at least some degree of relief (if not complete) with vestibular therapy vision and motion exercises.

I’m assuming you are up-to-date with all your scans. If you haven’t already, talk to your neurosurgeon or neurologist or otolaryngologist about the problem and ask about vestibular testing to hopefully identify the particular spot(s) responsible for those miserable feelings. They may then be able to isolate some simple exercises to help you cope better with it. I know some VHL patients who have had total success overcoming this same problem and others, who along with me, have not.

We always marvel at the fact that so many folks go out and spend money in bars just so they can feel this way. (Smile) Others choose the amusement park rides. It just is not fun when you can’t make it stop. A couple people have had varying degrees of success with different motion sickness medications, but you then have to wonder exactly what was the cause of those nasty feelings. I believe in always trying to find the explanation first, so no serious new or changing VHL problem (lesion) is overlooked. Then I personally try to adjust or improve the ways I handle the situation (i.e. movement tricks, eye focusing tricks) without chemical aids (and that includes the "natural" chemicals in herbs and health food stores products).

Always talk to your doctors about any new problems like this. Good luck...I suppose this means you won’t be wanting to stop by Cedar Point Amusement Park in Ohio when you go to the conference this October? Me neither! -- Fran Mott, Michigan Chapter VHLFA