How Do You Drive?

I’ve explained that flying is easy and walking is difficult. Well, driving is tough, too. Riding in a car is more difficult than driving, because when I drive I have my hands on the wheel. That feedback helps my proprioception (knowledge of where I am in space). And, it depends on where I drive.

Here, in the Boston area, we have very curvy streets, so you need to know where you are going. You cannot depend on using normal directions. You see, we have no grids. Oh, we have one small grid in Boston’s Back Bay. That’s the only place where you can say North, South, East, West, and have it mean something. Otherwise, those directions are meaningless.

The inner highway loop around Boston has a very famous area, where you are simultaneously traveling South on Rte 128 and North on Interstate 93. Yes, you are physically on the same road. That leads to several entitlement feelings on the part of Boston-area people:

  1. We have the God-given right to drive wherever the heck we want to.
  2. We have the God-given right to walk wherever the heck we want to.
  3. If you do not make eye contact with a driver, you have the right of way.
  4. If the yield signs going into the rotary are faded, they don’t count.

This means you need to be a simultaneously aggressive and conservative driver. Aggressive because otherwise you get nowhere. Conservative because otherwise you get hit. To be aggressive and conservative, I need to turn my head. This does not play to my strengths.

Before my hemorrhage, I loved driving. I especially enjoyed the feeling when I had a full tank of gas. I felt as if I could go anywhere, do anything. The possibilities were endless.

Now, driving is uncomfortable. Since I’ve been BrainPorting, it’s gotten easier to see, both straight on and turning my head. My vision doesn’t bounce as much either way. But it still bounces, and the longer I drive, the more it bounces.

I can drive for a few hours at a time. I have. I pay for it. I stagger when I get out of the car. I sleep for an extra 2-3 hours that night and for the next few nights. And, when I ride, I fall asleep. Mark doesn’t have to tell me to take a nap; I just fall asleep.

Flying is much easier.

8 thoughts on “How Do You Drive?

  1. Cynthia Hardy

    I can’t begin to tell you how good it makes me feel to hear someone else describe the same thing I feel when riding in a car as a passenger or being the driver. I look like a drunk exiting a car. I paid a big big price when my family talked me into a 10 hour drive to the beach. Even though I was medicated, I could not walk for over 24 hours. Yes, driving or riding short distances is all that I can do. My vestibular problems came after an endolymphatic shunt procedure for probable meniere’s that went horribly wrong. A piece of bone that was drilled away went through the dura covering of my brain, and into my brain tissue in the temporal lobe area. I had a big spinal fluid leak and bleeding after the surgery. A year later I developed seizures because of “scarring” of my brain. The seizures are called “epileptic vertigo” and have been impossible to control. So thank you for this blog. I have been dealing with the wierd eye stuff for over 10 years. I AM NOT ALONE! God bless you!

  2. D.S.

    Johanna, I am reading this several years after you first posted and I am wondering if you still drive and if so, how… I am new to the world of vertigo (have been dealing with it for the past three months; probable diagnosis based on exams is either Meniere’s or labyrinthitis). I haven’t driven at all since it started but I would like to do it again–just driving short distances in the city, nothing ambitious. Just curious about tips and if I can realistically hope to achieve this. My symptoms are mild (I never fell, fainted, or vomited, and I can walk and do yoga balance poses just fine, but I feel a swaying motion especially when I read, write, or do dishes – hahaha). My stronger dizzy feelings have mostly subsided. Still, I am unsure if they could come back unexpectedly in the middle of a drive… For the record, as a passenger I don’t get very dizzy (oddly I used to get dizzier as a passenger my whole life before I had vertigo). My ENT says I can try this cautiously… Any further tips?

    1. Johanna Post author

      Daniela, well, part of me says let someone else do dishes :-) That’s not so helpful, I admit.

      I had a vertigo attack once while driving. Scared the heck out of me. I was not on any meds at the time, because I have oscillopsia. (I only get BPPV when I fall.) I made it home. So, I do encourage you to drive. If possible, consider managing your risk at the start by having someone else who can drive with you in the car. (I am now on a muscle relaxant which manages my constant nystagmus/saccades.)

      I do drive around town when I’m at home. I don’t drive much. Even when we see our grown daughter who lives about 45 minutes away, my husband drives. Driving tires me out. I never rent a car any longer at a client site. I mostly take Uber or Lyft or a limo so I don’t drive.

      I would make sure my desk and glasses are correct for reading and writing. I do not have a problem when I sit. However, I am saving my husband a fortune in glasses. My distance prescription is too much right now. Given the pandemic and the fact that my computer glasses are fine, I rarely wear my regular glasses (progressives).

      For standing dizziness, remember that dizziness and balance are a function of your vision (under your control), your inner ear (somewhat under your control), and your hip flexors, glutes, quads, and hamstrings. Oh, probably abdominals, too. The big core muscles. (I know other people talk about core as just abdominals, but I seem to need to work on all of those muscles.) I recommend you find a physical therapist who can measure the relative strength of each of your muscles, front and back, side-to-side. I do a lot of work to continue to walk without falling over.

      As a side benefit, the more I work on my big muscle groups, the more confidence I have in my ability to recover from a vertigo attack. Which means I have more confidence in the car.

      So, all the risk management possibilities: make sure that if you wear glasses, your prescription is correct. If you need progressives or a change in your prescription, get them. (One of my optometrists wanted to switch me out of progressives because I had vertigo. I changed docs.) If you have semi-constant nystagmus, ask about a very low dose muscle relaxant to reduce the nystagmus. Work on those stabilization muscles so you have more confidence. Practice driving with someone else who can support you. Manage the risks, and go for it!

      1. D.S.

        <3 Thank you! Once again you have given me so much more insight and information than anywhere else. I do wear glasses for reading. My symptoms feel very visual, so I also went to an ophthalmologist, but he thought there was nothing wrong with my eyes or glasses. I can’t use my bifocals anymore though (with reading lenses at the bottom and no prescription at the top). They make me very, very dizzy. I am using regular ones but I notice I have to put them on exactly the right spot on my nose, and I had to lower my chair so my eyes are level with the screen.

        Thanks for the exercise suggestions–I will start doing strength exercises again! Walking every day has saved me–it is what has helped me the most. I am planning on seeking a vestibular therapist, but Covid numbers are not great here in the Midwest so I’d rather wait for now. I think you are right that a physical therapist might give me more insight into what is not working in my body. My ENT exams indicate inner-ear impairment (VNG and Ecog tests), but no hearing loss so far.

        I actually have no idea if I have nystagmus! I had it during the VNG, but I don’t know if it happens normally. Is there a way I could see it/feel it on my own?

        My husband does all the dishes now :) he’s been great about it. But in non-pandemic times he travels a lot for work, and this is why I want to make sure I can drive again. I actually don’t like driving at all, and never drive on highways, but I want to have a choice…

        Thank you! You know it can be dispiriting to have such challenges. It feels good to talk to someone who understands :)

        1. Johanna Post author

          Yeah, the ophthalmologists don’t know about visual problems with vertigo. That’s because even if you have nystagmus, they can’t see your eyes go back and forth unless they have the light-up goggle things. (The goggles that look like a scuba/snorkel mask, but they have lights on the inside.) If I were you, I’d consider half-glasses or single-vision reading glasses and then you can do what I do all the time: take the glasses off. put them on. take them off. put them on. Wonder where the heck I left them. retrace my steps. yeah.

          I walk 5000 steps every day. I use a rollator now because I am not stable enough with just a cane. I am sure you do not need a cane or a rollator, but if you feel dizzy when walking, consider hiking sticks. They will help you walk faster, which will build muscles and your self-confidence, and allow you to get aerobic exercise.

          For a while, my nystagmus was visible to other people. See https://en.wikipedia.org/wiki/Nystagmus and take a look at the little video. That’s what I looked like until I got the first kind of medication. I have horizontal nystagmus. Supposedly, your ophthalmologist can detect it, but once my nystagmus calmed down, she could not. My vestibular therapist did a little test: While I looked straight at her, she held my head in her hands. She then quickly moved my head from center to approx 90 degrees left, then right back to center. Same to the right. My right inner ear is totally damaged, so I have no vestibular ocular reflex. When she moved my head to my left and returned it, my eyes had visible nystagmus. I’m not sure I would suggest you do this at home :-). Especially not if you think you might trigger a vertigo attack.

          BTW, if you have no hearing loss yet, I would be quite surprised if you have Meniere’s. I guess you can’t rule it out, but that is not the first diagnosis I would guess. When you are ready to see another doc, I strongly recommend a vestibular neurologist. Or, an oto-neurologist. They’re all full of themselves, so expect stupid “bedside” manners. However, they are more likely to give you a correct diagnosis. And, I totally understand that you want to wait. Oh, they probably affiliate with university-based medical centers. I live in Boston, so I have many possible docs from which to choose.

  3. D.S.

    My ENT seems very Meniére-oriented for some reason! He told me there might be something like “vestibular-only Meniére.” I also have symptoms of vestibular migraines, which he says many Meniére’s patients have. Still, I don’t think I fit all the patterns that I read online. And I would much prefer to have a one-time thing like labyrinthitis rather than a chronic condition… I will look for a vestibular neurologist, that’s a great idea.

    I will try to record my eyes on video to see if I can see any nystagmus!

    5,000 steps a day sound wonderful. I am trying to walk almost every day. On the days I don’t walk, my symptoms are much worse.

    Once I work up my courage to try out a drive, I will come back here and give an update!

    Thank you, Johanna :)

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