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Driving and MAV

Hello,
I have was diagnosed with MAV about 2 days ago. It started about 3 weeks ago after a sudden bout of incredible motion sickness while being a passenger in a car (I have never before been motion sick!). Since then I have been in this foggy state with dizziness when I move my head and nausea after too much movement. I have started nortriptyline (10 mg) and vestibular rehab this week. I am supposed to start my new job next Thursday and unfortunately cannot drive. I still cannot be a passenger in a car without getting nauseous. Until I can drive again my saint of a boyfriend will drive me to work.

So my question is, how long did it take you before you were able to drive again? I know this answer is different for everyone, but I am interested in everyone’s experience.

Thanks,
Julia

I feel like I am on a roller coaster if a passenger in a car. I am much better driving myself because I am in control of my brain and know where I am going. When I stop the car and get out, I feel wobbly like I am walking on sponge. I can manage short journeys only. Longer journeys are a nightmare because I feel so sick dizzy and drained when the car has stopped.

Angela

I couldn’t really drive for a couple of months after I got this and then I very slowly got back into driving. One year later I’m still not driving any distance on motorways and limit myself to back roads. I’m much more comfortable driving now than I was but it’s still a struggle somedays.
It’s really annoying as I used to really like driving and even used to do track days in my car, even now I feel more comfortable going fast (or at least getting a sensation of speed) than I do going slowly or being forced to dawdle along behind a slow moving vehicle.

I can’t answer your question because for me my MAV didn’t start like yours - one day I’m fine the next I’m not. Mine was more of a slowly evolving motion sickness that eventually turned to horrid vertigo attack. But I do want to say that I have always been a terrible passenger and it has only gotten worse in the last few years. With the exception of about 2-3 trips a mile or two from home, and a couple other ones where I had to be taken to medical appts (like outpatient surgery where I can’t drive and the ENG) I have always been the driver for the last 6-7 years. Even as a driver I tend to feel kind of off balance at the end of a long trip (more than an hour).

Can you take meclizine or something else to help you get through this rough patch?

I still think it is interesting that people being diagnosed with vestibular migraines have such wildly different symptoms. For me, when I was my most sick, driving or riding in a car was the only time I DIDN’T feel terrible. It was when I was sitting still, specifically lying down, that things were horrible. When I was in motion in a car, the motion of the car almost completely masked the false rocking motion that I was feeling.

I wish someone would do some real research on this. While I’ve been able to get neurologists to treat me with Topamax and essentially get rid of most of my symptoms, even they seem to have never heard of another case like mine when I talk to them.

Same symptoms as you Jamie. Would love to know why there are so many individual differences between MAV sufferers. Hoping much more research goes on in the next decade. How long have you been taking topa and how long did it take to become effective?

I’ve been on the Topamax a little over 2 years now, most of that time at 100mg. It actually started working for me very quickly, much quicker than I was told to expect it. I started feeling the effects probably during the 2nd or 3rd week I was taking it, around 50mg, though that was just when I noticed things were trending better. I didn’t get to the place where I felt that things were 90%+ until probably 6 months, but that also included identifying some of my primary migraine triggers and mostly eliminating them from my life. For me that was almost exclusively the strobing backlight used in computer monitors and LCD/LED TV’s that use pulse-width modulation (PWM) to control brightness. Of course, I stare at computer monitors for 10+ hours a day in my job and then watch TV at home so that was obviously a big deal for me, as I was basically staring at migraine-induction boxes (for me) all day.

Hi Julia
Like others mention, I got really motion sick as a passenger but fairly early on could drive my car. The main problem was stopping at traffic lights when I’d begin to feel dizzy! However, I was back driving long before I was able to be a passenger without feeling nauseous & dizzy.
Topamax has helped a lot, although I’ve recently had a relapse with vertigo attacks at night and "mini-spins’ during the day! However, I can still get around if I walk fast and I can still drive.

Jamie - We are about to buy a new TV. Ours has been on the blink for quite a while but have been putting it off not knowing how I’m going to react. Screens are not good for me! As far as I’m aware there are no PWM (pulse width modulation free) TV screens. Is a TV screen easier to get used to because you are further away from the screen, unlike a computer monitor which takes almost all of your vision?
Good to hear you are doing well.
Barb

I don’t know if TV’s are easier to get used to per se. You usually spend less time staring directly into them at a greater distance away than a computer monitor, so I don’t think they are as bad. What I’ve done on my LCD/LED TVs is turn them up to full (100%) brightness which for the models I have (Samsung and Insignia) eliminates the PWM flicker. I’m able to measure it with my optical oscilloscope so that I know it works. I realize that doesn’t help other people.

I do believe that plasma TVs don’t tend to have the PWM issue. The readings I get off of plasmas from my optical oscilloscope are a little odd, but they don’t look anything like the square-wave PWM flicker readings I get from LCD/LED TVs. You might try out a plasma (maybe a friend has one?) and see if it bothers you less than an LCD/LED TV does.

I had to return my Samsung led tv as it I believe it is the reason I came down with mav in the first place, I now have a plasma and I have no problems whatsoever with it

Thanks Jamie & Upgrader
Thanks for the info Jamie. Upgrader - interesting that you don’t have any problems with the plasma screen. I haven’t heard any comments from other forum members as to whether they find the plasmas easier to cope with!

I have noticed that most TVs in the stores now seem to be LCD/LED screens and wondered whether the plasmas are being phased out. I think they cost more to run.

Will try out the plasma at a friend’s place & see how my brain feels!
Barb

The plasma’s do cost more to run. I believe the reason they don’t flicker is that each individual pixel is being controlled separately, so you never get a full-field strobing effect from them.

The stupid part of PWM in LCD/LED is that they don’t HAVE to use it. They just do because it is the cheapest way to control brightness and for the most part they don’t realize the health effect it is having on migraine sufferers. It really sucks.

I can echo the experience that plasma is fine for me but LED affects me terribly. I’m still trying to find a laptop that doesn’t use PWM. I’m a graduate student and do a ton of work on my laptop, yet it’s probably one of my biggest triggers.

Hello, just found this forum recently and it is hard to believe I have not found it until now. I started a website due to my condition over 2 years ago and at that time I was scouring the web for information, something tells me I am suffering from MAV due to my Vertigo and Migraine response to LED/Florescent lighting. I am compelled to respond to this thread in relation to the comments on monitors, most specifically Plasma. I will also mention I have tried several medications and have been medication free for some time now. This is a result of avoiding my triggers primarily and experimenting with anti-glare coatings, Prism and other eye glass combinations. I think I can help by sharing my collected data about triggers and glasses, I will list some information below towards that goal however this is a long topic with many details so I will be available for further discussion as much as possible. Much of how I avoid triggers became possible by analyzing my very detailed headache calendars and reading about lighting technology. I am currently on disability so avoidance is an option for now…

Monitors: This is too complicated to get into every detail so I will start with the basics. Plasma is better for some because the light distribution is produced by each pixel, there is NO back lighting. Back lighting leads to a whole host of issues with LCD screens whether lit by LED or CCFL such as light “Bleed through” and flicker that can be intense especially if the back light is LED. Understanding flicker with LED is complicated but the most concerning thing to understand for us is how LED responds to fluctuations in power delivery. CCFL (Florescent) back lights leave behind a ghost image of light because they cannot react to fluctuations in power like an LED which can react immediately going from 100% on to 0% light emission creating intense flicker.

Simple explanation:
-Incandescent (Glowing hot metal, needs to cool to display flicker) Very little flicker possible
-CCFL/Florescent (Gases which glow leaving light behind when reacting to power delivery) Some moderate flicker possible
-LED (Either ON or OFF, this light leaves no light behind when it reacts to power delivery) Most flicker possible with light in history

One of the questions I have is whether or not even flicker free LED monitors are responding to the 60Hz power delivery? An experiment with an oscilloscope and different power set ups could be a great venture here…

Spectrum also factors in, LED’s are blue whether they look orange or yellow matters not at all. The light itself is blue at the source because they cannot make a red or green LED bulb that does not burn out in shorter time than a blue LED light (There are some monitors using red LED lights added to the blue to effect color however this is not removing the blue bulbs from the equation). Tricks like Phosphor coatings are used to “change” the spectrum of the blue light. Knowing this you can see how all of our tablets and other devices like Iphone’s have over the years become more “crisp” and bright white/Blue in appearance. This is due to a reduction in yellow phosphor coatings on the LED back lights themselves. Hopefully this helps with why for some people tablets and Iphone’s are more offensive than most other technology.

I am currently using a Pioneer Kuro PDP4020HD plasma monitor, this monitor is 7 years old roughly. For some reason the newest Plasma’s bother me much more than this monitor. Another thing of note however is without my current glasses I could not use this monitor at all in the up close computer monitor method I am using it now. Also, at a distance this monitor can be used for television with better results. My theory on distance is how it adds more natural light between the viewer and the display. Natural light is another topic that is very important to people with light sensitivity which I can discuss further in another post if requested.

Glasses: I have tried everything, I even tried welding glasses in my work environment before losing my job to this disease. The overhead LED lighting my company installed that triggered my disease into its current level of severity is truly the most offensively bright blue LED lighting ever made. I was already sensitive to florescent before this exposure however the LED sent me over the edge, my history is something else I would be happy to discuss if requested. I started with great success under florescent lighting using an anti-glare coating from Crizal. For 2 years I was “OK” under florescent lighting using a CCFL back lit computer monitor however this coating did not help me with LED lighting. I have realized it does help me slightly with minor exposure’s like using my Iphone for 1-2 minutes sparingly. It does help a little with LED tail lights on cars however I avoid driving in low light conditions at all costs. I have tried migraine lenses and many different colored lenses, my current lenses are the best so far, here is a list with some more detail:

-FL-41 tinted lenses (Rose colored) This tint by the Moron Eye center has been shown to reduce migraine incidents per month in a medical study performed by the Moron Eye center. By itself it does seem to “Mute” some of the brightness and block some ill effects of florescent lighting, 0 help with LED lighting. I found out through trial and error that adding the Crizal coating to this tint is what helped me the most, then I realized Crizal by itself is just as good and the tint may not really do much at all for me. Interestingly enough the Moron Eye center recommends you add an anti-glare coating to the tint! There are no studies I am aware of on the effects of anti-glare coatings and migraine.

-Crizal Prevencia (My current coating, blocks 20% of harmful blue light wavelengths) I have found this coating helps a lot with most florescent lighting and using my Plasma monitors for up to 1-2 hours a day. Certain environments are more taxing no matter what for example: Walmart (White floors and excessive amount of light) Any place that’s using reflective mirrors and florescent lighting in combination and CFL’s are much more offensive than traditional florescent lighting tubes.

-Prism I have a measurement of 4 or 2 OD in each eye, my vision however is 20/15 so no need for glasses in regards to sight. This is not a significant amount of Prism however it helps my eyes relax just a little bit more. Someone who contacted me through my website steered me into Prism due to some eye “Drift” he noticed with his eyes. My eye’s seem to drift evenly to center just a little bit. You need a supportive eye doctor to pursue this experiment because it is way off the normal path and requires an open mind, my doctor performed an eye drop test to confirm we had the right measurement. For this amount of Prism most doctors would not even prescribe Prism lenses so it is an abnormal pursuit however it added something important for me.

I have tried to just scratch the surface here without getting too long winded and losing everyone in the details, my research has involved speaking with doctors in the field of light and a plethora of Neurologist’s, Ophthalmologist’s, Chiropractors, ENT’s Natural paths and endless reading about technology and how it works. I do not claim to be an expert in any of these fields and my explanations are my understanding of this collective information, not definitive facts. I am currently living with this through avoidance which would not be possible if I had not tracked in such fine detail all of my reactions to light and the results. For example I know that I can tolerate more trips to Florescent lit stores (Grocery stores, Walmart as an example) on sunny days than I can on cloudy days, so why? Because the sun “washes out” some of the exposure to LED tail lights and helps regulate my brain once I return outside from the stores. Unfortunately the majority of stores in my area have at least some LED lighting or are all LED lighting and I cannot enter them at all. I could conceivably lose the ability to shop altogether in the near future and maybe even drive with the increase in LED headlight technology.

What I have learned is that I have this bucket I can fill each day, the only question is what will I put into it, what will I prioritize? Looking at my iphone for 1 minute adds to the bucket, writing this post for 30 minutes adds to my bucket. If I do not over fill this bucket I will not have intense Vertigo and Migraines. I have had some really bad reactions to medications like Topamax so this is how I cope for now and I hope some of you here find this info helpful. My website is called lightsickness.com and I have not updated it in over a year however I do reply to people who post there.

Avoidance is impossible for those who work in the IT field for example however I will tell you that I personally would be completely debilitated with all day long exposure to any computer monitor. I have noticed the severity of my situation is high compared to many, I believe I can contribute this to the extended period of time I spent trying to save my job under pure LED lighting. I believe that the more traumatic episodes you have the worse your condition can get, before they installed the LED lighting at my work I had much more tolerance to florescent lighting than I do now. It seems some people are having a certain amount of success with medications however I question if any medication could fix this problem for someone who is in an all LED environment at all times?

It is strange to live in a world where for me LED technology makes me very sick and the only answer to live with this technology is to medicate myself. Funny how there is nothing wrong with me otherwise, I have no issues with incandescent lighting or the sun…I do not get random migraines or Vertigo…LED lighting is the ON/OFF switch for my symptoms.

This leads me to the question’s for other’s: How self aware are you of your triggers? Is it possible many people with MAV or just Vertigo would be normal without all of these triggers in our daily lives? Are other’s here very sensitive to LED tail lights and overhead LED lighting, do you know what to look for when you are in a store or restaurant? Is the world of technology making you sick or are YOU actually sick…?

There is definitely a difference in peoples symptoms, sometimes I think it is a matter of how sensitive someone is and whether they notice what the triggers truly are…Someone who can use an Iphone but not an LED computer monitor might just have a much more offensive CP monitor than phone and be less sensitive in general than someone like myself. Or maybe it is something else?

I hope this is helpful info, sorry for the length. I also hope I have asked some helpful questions, I know the answers will help me understand commonalities better among those who are sensitive to eco-friendly lighting. I am excited to see there is a medically accepted diagnoses besides just migraine, I will bring the paper written by Jennifer Hart to my next Neurologist appointment.

Best wishes for all who suffer,

Jesse

Hi Jesse
Welcome and thank you for sharing all your research & posting your (bad) experience with lighting and screens! Definitely something many forum members can relate to & something I’ve been struggling with for the past four years after MAV hit.

It’s taken quite a while for me to get to the point where I can visit shops/library/malls, etc. Meds & knowing my time limits, etc helps.

Screens - took a long time to watch a TV. Many months of tiny increases. Now I usually limit to 2hrs max.
PC use limited to ipad2 until recently when I purchased a flicker free screen. Can use this for maybe an hour or slightly more - depending on how empty/full my “bucket” is!

Night driving is still off the menu. Cycling/walking being outdoors is excellent as long as I don’t óvertire’ myself. The latest flashing cyclist lights are a complete pain tho - I usually only cycle on bike paths so can’t see that they really need them when not on roads.

Photophobia is a very well known symptom of migraine but these new LED lights make things even worse and the vertigo makes everything so much harder to deal with.
Keep us posted with your neuro appt.
Barb

Thank you for the reply Barb, some interesting inputs in your post. I noticed you are in Australia, are there Indoor LED lighting present in many shops and business’s there?

I share your pain with the new cycling lights, even on sunny days I find it hard to survive these when I am driving and they are coming towards me, they are SO incredibly bright! Which brings up something, I believe part of our problem can be related to an interesting quote from a Spanish article I read: “Humans are meant to see with light, not stare directly at light”. In this context it is easy to understand why LED are so much more offensive than other lighting because they are always so much more intensely bright and the cheaper ones (Like the bicycle lights) are always Blue/white. Secondly, our monitors use back lights which are filtered by different means to allow the light to pass through, staring directly at this light has never been healthy and with the intensity of LED it is magnified X10 compared to the older CCFL back lights we are used to staring directly at.

It is interesting you can use an Ipad 2, one trend I have found would be the many different accounts from people who are able to use one Apple product but not another. Sometimes it is an iphone Vs. Ipad and the generations are different or the software updates have suddenly made their device intolerable. There is a lot at play here with our technology and the varying degrees of sensitivity from one person to the next. You may find a newer Ipad completely intolerable compared to your current model. I unfortunately seem to be triggered by everything at this point LED, some devices are better but I have much better days if I avoid everything LED as rule. One change I have seen is how the screens over time have become more bright white/blue instead of the yellow hue they used to have, this is from the change in coating on the LED bulb itself, the Phosphor.

You may find this Apple forum post interesting, there are over 520,000 views so there may be many more people out there who are becoming aware they have an issue and simply do not understand why yet: discussions.apple.com/message/2 … 0#26775451

Thank you Again,

Jesse

After meeting with my Neurologist yesterday I now have a diagnoses of MAV. Before I even brought it up she did, it looks like we both came to the same conclusion at the same time. Now it looks like I will begin another medication journey, this time with a more specific target at least.

Hi, I know this has come up several times in the past and may receive mixed reviews now since many members have moved on.

The discomfort that comes with stop and go traffic is something that is new to me.

I’ve read several posts where people feel worse (head feels swimmy, foggy, even anxious) when at a red light, etc.

Im just wondering how do you all do with driving and what has helped (do we think this is more of a visual vertigo problem where SNRI or TCA would help?)

I can’t figure out what exactly is going on except that a different med combo is needed to minimize a lot of symptoms including this one.

Any thoughts/ suggestions much appreciated :blush:

Not exactly sure which you mean by this.

Is this visual vertigo you are referring to where traffic in your peripheral vision causes issues. You experience that ‘is it me or is the next car over that moving’ feeling, or …

… is it that feeling that you are going forwards after the vehicle in which you are travelling has actually ceased moving. A feeling I also experienced when walking on foot and stopping not just when travelling by car. I always remember when this first happened to me asking my doctor to which he cheerfully replied ‘oh that’s your balance [playing up], there’s nothing we can do about that’. VM is sometimes referred to as a ‘migraine variant balance disorder so.

Either way I’d suggest that thanks to VM they represent the extreme end of the Motion Sickness spectrum which is normally usually associated with actual autonomous symptoms such as nausea, shivering and occur due to the hypersensitivity of your current condition. They aren’t separate issues so should eventually respond to your usual treatment regime.

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Hi Helen,

Thank you for your response - so what I’m referrjt tk is It’s the latter (where you feel like you’re still in motion but car is stopped). Also find that my head overall more sensitive to stopping or if someone has to slam on brakes. I never had motion sensitivity/ sickness as a child, so this is pretty new to me and upsetting.

I just wondered if anyone on the forum experienced this motion sensitivity in the car (esp as the driver) but able to overcome it after medication settled down other types of MAV symptoms.