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Posted by: blessedgmp ® 07/21/2013, 11:52:45 |
After going to 5 neurologists, 4 opthomologists and an opthomology neurologist the best guess is blepharospasm. My main problem is I am super light sensitive and I can't keep my eyes open for long. My question is how do you drive with this condition? I drive a little just a couple of miles here and there but we are moving out into the country and the closest anything is 12-15 miles away. I don't think I can drive that far but don't want to be isolated. What helps you to drive longer distances? I am scheduled for my first botox shot the end of August. I am praying it will help |
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Posted by: judith k ® 07/21/2013, 13:02:31 |
Hi, I was very light sensitive before diagnosis, and also for a period after I began getting Botox. After the Botox dose got established, things got much better.
(Walking into a store that has racks of halogen lights shining into my eyes, or
Meanwhile, if you are wearing plain sunglasses and they don't help enough, you can try FL41 lenses. You can get the FL41 coating applied to a pair of regular prescription glasses.
If plain OTC sunglasses don't help you enough, or you feel like experimenting, you might want to get the FL41 coating sooner rather than later.
Then I get the coating applied. The old glasses can't have any other coating on them, like no non-glare coating. It costs about $42 including postage.
Many people (I'm one) have found them especially useful, as they block the blue light spectrum that is most irritating to people with blepharospasm. Wraparounds can help even more, as light from the side is also blocked. And, with or without FL41s, some people wear a hat (like a baseball cap, or some other kind), or a simple visor. Make sure your eyes are properly lubricated. This is always a good thing, but
When you are driving, you MUST look straight ahead and can't keep doing little adjustments to relieve your eyes—the way you can when watching TV, reading, knitting—you don't have those 'take a break' choices when you're driving. Often—it was this way for me—the difference between how my eyes were before diagnosis and how they were after I got the correct Botox was amazing (I was fortunate in that getting the right dose took only a few rounds of injections). Keep in mind that doctors have different approaches, and some like to start with
Sometimes the low dose turns out to be the correct dose, or at least gives substantial relief. Just in case it doesn't—that absolutely doesn't mean that Botox isn't going to work for you!
If you get even some relief, driving 12-15 miles is—even on country roads—30 minutes at most? I hope that will be possible for you.
How old are you? Did all the doctors you saw suspect blepharospasm? If not, what other possibilities did they mention? When I drive long distances (very rarely, as much as 2 1/2 hours) I stop every hour or so. Rest my eyes, walk about, have a cup of coffee.
Good luck! Keep us posted. Judith K Modified by judith k at Sun, Jul 21, 2013, 13:04:30 |
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Posted by: blessedgmp ® 07/21/2013, 18:28:58 |
Thanks Judith for the info and encouragement. I am 63 and disabled. The other possibility is that when I had shingles in my eye a few years back that it caused nerve damage. I suspect this is at least part of the problem because the eye I had shingles in is much much worse then the other one. Pat |
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Posted by: diane48 ® 07/22/2013, 08:33:12 |
Oh my dear, your past eye shingles, what an unpleasant ordeal! That condition was probably a contributing factor to your light sensitivity & eyelid spasms/blepharospasm. I had shingles on my back, & it was quite irritating & painful. I can imagine the effects you felt when it presented in your eye, as the eye is such a sensitive & vulnerable part of our body! This is a video of a woman with eye shingles. In this, it is present *underneath* her eye, not as in her previous case of at the lower lid, & upper lid, causing her eye to be "red & raw," which must have been miserable! In the video,she shows a product she uses -lysine, which she is not commercially endorsing, only suggesting as something that helps her. (The video also features a background of a squawking bird, a barking dog, & some tv show, but such is life! If you view it, you can click on lower right screen to skip the ad.) Related link: http://www.google.com/url?sa=t&rct=j&q=eye%20shingles&source=web&cd=7&cad=rja&sqi=2&ved=0CGkQtwIwBg&url=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3Dft8dWvH3GKc&ei=ckrtUfnfEoev4APJ8IGgBA&usg=AFQjCNEoj9kfvtnqZr2c4KgpNpdckPP7Tw Modified by diane48 at Mon, Jul 29, 2013, 14:08:31 |
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Posted by: blessedgmp ® 07/21/2013, 18:29:59 |
Thanks Judith for the info and encouragement. I am 63 and disabled. The other possibility is that when I had shingles in my eye a few years back that it caused nerve damage. I suspect this is at least part of the problem because the eye I had shingles in is much much worse then the other one. Pat |
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Posted by: grant ® 07/22/2013, 06:50:37 |
Hi Judith
Like the comment re looking straight ahead. I found this essential if I turn my head and look either right or left when I return to the front again eyes close. I am very mindfully of this and concentrate on forcing my eyes to remain open - however you soon learn to change the way you drive. One of the best things I had installed was a rear vision camera which is positioned on the windscreen at eye level. Depending on local law requirements you can also purchase an option which clips on the rear vision mirror or visor. Whilst looking straight ahead a quick glance can also show you what is happening behind. Added benefit is reversing you can check what is immediately behind your car and with the distance measurement on view, how close you are to a fence, Pole, wall or other car when parking.
Grant in sunny Queensland Australia |
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Posted by: pdb ® 07/22/2013, 14:55:52 |
Hi Grant, I don't have an issue with looking around when driving - I seem less prone to problems in the driving environment for some (good) reason. But if I'm out walking and have to cross a road, when I do the "look left, look right, look left again" trick, my eyes spasm closed with each full swing around to an opposite direction. re the camera, more cars are coming with the rear facing camera, but usually they're only on when you are in reverse; setting one up like you have seems like a good thought. cheers Peter |
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Posted by: DianeLDL ® 07/21/2013, 19:31:38 |
What type of roads will you be on?for example are they straight or curvy. I assume they are to lane country roads. It is interesting since when we are in Albuquerque wher we spend most of our time, it is city driving and my husband is more fearful of the crazy drivers who pass on the right, pull out suddenly, etc. But, in the Bangor area of central Maine, we live in a more county setting although downtown Bangor is wbout 3 1/2 miles from home. Since there is less traffic and nice back roads, I do better driving. I don't drive at night, and my eyes are better in the morning, I wait u til after rush hour, too. But, rush hour in our area of Maine isn't like even southern Maine. It also depends upon where in my injection cycle I am at and how I feel that day. I find I need to sing with a CD, too which keeps me focused and eyes open. So, I would say it would depend daily on what you will be able to do as well as th traffic patterns. Good luck and great you have a diagnosis. Although I did read about having shingles. So, you may have more than one issue here. I will be 62 in November so we are in the same ballpark as to age. Diane |
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Posted by: DianeLDL ® 07/21/2013, 19:41:27 |
Also, consider if there are forests or fields and potential wildlife to be on the look out for such as deer, etc. they cause mor accidents in Maine. Diane |
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Posted by: diane48 ® 07/22/2013, 06:34:57 |
For your light sensitivity while driving, you can also use *polarized* sunglasses. If you do or don't wear eyeglasses, you can get "fit over" sunglasses: •Comfortably fit over prescription eyewear
I got mine at Walmart, not in the optical dept., but on the regular sunglasses rack, near accessories. Also available at convenience stores, like CVS. They are by Solar Shield, the cost was approx. $20, if I recall. Some here use ones by Cocoon, available online, I think. (This is not an advertisement for those brands or stores!) While driving, before arriving at successful Botox dosage & injection sites, some of us needed to resort to holding our eyelids open with our fingertips, although for optimal safe driving, both hands on the steering wheel is best, as you know! Here is an excerpt from BEBRF FAQ,
Question: What are some things you can do to relieve the symptoms of benign essential blepharospasm?
Here's the link to the entire FAQ (Frequently Asked Questions):
Related link: http://www.blepharospasm.org/blepharospasm-faq.html Modified by diane48 at Mon, Jul 22, 2013, 08:43:39 |
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Posted by: sue in orlando ® 07/28/2013, 08:36:09 |
I am at the end of my botox cycle and have an appt next week, so driving has become hard for me again. I have to drive about 45 min. to work on a highway. So, since I have to suffer for a week before my shots, I have tried focusing while driving. The other day, I had my hand in my purse while I was driving, trying to find my glasses. I have a big bag so it took me a while to find it - about 10 minutes. After I found my glasses, I realized that my mind was focused on the glasses and I had no spasms or eye closure while staring at the road. I guess my internal mind was pre-occupied. So, for 2 days I decided to try to change my mental focus while driving. I turn off the radio and begin my drive focusing on calming down and looking straight ahead at the car in front of me. After about 2 min, I move my eyes to a place in the car like the radio for about 1 second then immediately back to the road. I have tried this looking up also - like at my visor. So far, it has been working very good for me. Good Luck, Sue :) |
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Posted by: lisao ® 07/30/2013, 08:28:17 |
Sue, What you are doing sounds like neuroplasticity therapy. If you find you can consistently keep spasms at bay doing this, eventually your brain will have more memories of not spasming while driving than spasming, and it will begin to opt for not spasming automatically in that situation ... It's interesting that staring straight ahead helps you because, for some of us, directing the gaze ahead but also seeing what is on both sides (that is, taking in more peripheral vision) at the same time works better than focusing intently on an area in front. But whatever works! The calming seems universally helpful!! :)
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Posted by: Jeannie from Ohio ® 08/04/2013, 18:37:02 |
When I'm having trouble with spasms while driving I do some similar things that you do. Another thing I do is squeeze the steering wheel or something else and breathe deeply. It helps. Talking does not help so I guess it's not just a diversion. But, again, what works for one may or may not work for another. |
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Posted by: cocopuffs ® 08/04/2013, 19:20:49 |
I have found when I am driving if I focus on something else it helps.....when I focus on the road it gets worse....I just don't understand...I am praying for complete healing.... |
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