Hi all, I’m new to the forums and after reading around a little bit I decided to post. I’ve been suffering from severe light sensitivity (especially fluorescent lighting) now since last May. I was diagnosed with migraine around Feb or March of last year and had been trying to control with Ibuprofen and Tylenol only. I then, in May, was jabbed in the side of the head by some guys elbow and it caused an INSTANT migraine. Since that day, I’ve suffered horrible migraines (and almost CONSTANTLY), along with tension headaches, vertigo, and light sensitivity. I’ve been back and forth to diff doctors and specialists and was diagnosed from the Neuro as having muscle contraction headaches with a migraine component. They think the vertigo is just coming from the migraines.
I never understood how the vertigo could be caused BY the migraine, when the vertigo comes first… does anyone else experience it like this? Are you sensitive to fluorescent lighting? Here’s a typical espisode for me when exposed to fluorescent lighting:
Within 5-10 minutes of exposure I begin feeling a tightening in my entire scalp which originates from the lower/back of my head. The vertigo kicks in and my vision gets “wavy”, almost like being on a boat, or looking through wavy water. My face feels hot, and muscles are tense (jaw, cheeks, eyes hurt). I suffer the vertigo, which increasingly gets worse, and then the head pain kicks in more. It gradually gets worse and worse and then just hits like a ton a bricks. The longer I’m around the lighting, the worse it gets. If I leave right away, the vertigo will fade but the migraine still hits. Days that I have more exposure, I will have a migraine all night and normally the next day as well (first thing upon waking and it lasts all day)!
It sounds like your doctors are spot on where the migraine is concerned. A lot of people on here are diagnosed with migraine associated vertigo and never even have headaches. The notion of migraine as a painful headache is quite dated - migraine can manifest in many ways - headache and vertigo, just dizziness, some people experience ocular migraine which is solely visual symptoms. I am extremely sensitive to light include bright sunshine and if I don’t take precautions it can bring on a big dizzy attack, although ironically often, not a headache, just the dizziness. It’s worth reading some of the literature in the information section of these boards which will explain more. There is also an excellent book called ‘Heal Your Headache’ by David Bucholz, which explains more about the ways migraine manifest.
Also, it’s now understood that there are links between fibro, ME and migraine, although I don’t think it is clear what the exact mechanism is that causes this.
Have your doctors talked to you about taking a migraine preventative, unfortunately on the spot migraine meds don’t tend to work for vertigo.
Thanks for the reply! I’ll keep checking out more of the literature and other posts on here. I was given a script for Nortriptyline but haven’t started that yet. I was having numerous other symptoms as well and trying to find a cause for everything before covering symptoms with meds. I was just diagnosed with the Fibro yesterday actually, so now I’m ready to get on a treatment program the migraines and vertigo issues, as well as the other fibro symptoms. It’d sure be nice to be able to get back to work! I haven’t been able to work since July because of the fluorescent lighting in the office!
I’m a pretty paranoid person when it comes to medications and their side effects, but I’m ready to try something and get my life back!
I believe there are a lot of people on this forum that are light sensitive. I am extremely photophobic. I was at a professional conference this past 4 days, I am deaf so I was with 2 sign language interpreters, one of whom I know very well. I also use a wheelchair because of MAV and dizziness/imbalance. I wheeled around a power point projector and was careful to look down and away but could not completely close my eyes or I would crash into chairs. I must have glanced at the projector light for less than a second, but it set off a Basilar type Migraine. I was thankful that I had injectable Sumatriptan and could sign to the interpreters that I needed ice. I lose my ability to speak and occasionally lose consciousness. Thankfully the interpreters did not panic & helped me through the problem.
At work, I travel to many clinics and have specific rooms that I work in that have natural light. When I go to my doctors’ office, I always ask them to turn off the lights in the exam rooms. So I have figured out how to work through it, most of the time.
Good luck with the fibro. I do not have to deal with that or any other ancillary issues that are common with MAV.
In high school, i always loved when the teachers had the lighting turned off and the windows opened instead! Now, I know why! I hate flourescent lighting and it always baffles me when I go to nuerologist offices and inner-ear doctor offices and they have flourescent lighting- hello! don’t they have enough migraine patients?!
Just try to make your situation work. In stores, I wear sunglasses, who cares, I don’t. At work, I’m fortunate my 2 other co-workers don’t like that lighting either and we use desk lamps and a floor lamp- so much better! We call it “mood lighting”
Hey all, just updating since it’s been awhile. I still have found no relief, and no solid diagnosis (just “it could be…”, “maybe it’s…”). I still suffer the horrible effects of the fluorescents, in fact I believe it’s actually worse now. It seems like some places are definitely worse than others, but I have no idea why.
On top of the vertigo, nausea, muscle tension (head, face incl jaw, neck, shoulders), tension headaches and migraines that I get from the lights, I also suffer: inability to concentrate, think clearly, and speak clearly. It’s like I can’t think of the words I want to say, and almost “stutter” trying to talk.I have always had a high vocabulary and never had trouble with speaking. Now I can’t even find BASIC words to express what I’m trying to say. My face gets very hot and flushed feeling, my heart feels like it’s going crazy, and I feel like my breathing is much heavier or “thicker”. I get very irritable and uncomfortable feeling. These also increase in severity the longer that I’m exposed to the lights.
I’m on amitriptyline, vitamin d prescription (for a severe deficiency due to fibro), and a multi-vitamin, but have found no relief from the lights at all. I’I always wear the fl-41 tinted glasses, and they seem like they may help slightly delay the reaction, but they definitely don’t stop it at all.
Is there anyone that gets these same symptoms? I’d like to find out if it’s the lights themselves (ie: mercury or another chemical component) or the flicker. Maybe that would help some with finding a cure or bandaid. I’m losing hope, it’s been 1.5 years now since this started and I’m losing everything. I haven’t been able to work since last year July from this and I’m a single mother. I have no income now. I’m fighting with LT disability after having fought ST disability, and I’m getting exhausted.
Many of us here have a variety of symptoms; all that you have described are not unusual to us at all! Chronic fatigue, flu-like symptoms, fibromyalgia-like symptoms, light sensitivity, dizziness, vertigo, foggy thinking, ear fullness, tinnitus, headaches (but not always!), memory problems, anxiety & panic attacks, IBS etc. The list goes on I am sure I am forgetting even some of my own symptoms!
The problem with the fluorescent lights is that they flicker. It’s what sets off Epileptics. IM not so HO, they should be illegal. Horrible things!
I can feel pretty okay, start to get some things done around the house etc, and the a quick trip to the supermarket & I’m down for the rest of the day. For some reason, supermarkets seem to get us pretty badly, with those wide aisles & every single thing being lit up by fluorescent lights! Ugh.
When this last chronic episode hit me I could barely spend any time on the computer at all before rotational vertigo set in. There is a thread here somewhere about computer monitors, you should look for in good info.
Anyway again welcome to the forum there is a ton of info here & lots of support!
Candi, I can’t tell you for sure, but your symptoms do sound VERY much like migraine to me. The tingling/tightning in the head, followed by the vertigo are pretty much exactly what would happen to me when I was exposed to bright artificial light, especially flourescent light.
Why do certain lights set off migraines more than others? I haven’t gotten a straight answer on that one yet. Sure, the flourescents are the worst for sure because they flicker. Especially the cheap ones that are present in big box stores–they are by far the worst. 5-10 minutes under those were enough to set me off big time. But I was also sensitive to ANY artificial light, even non-flickering incadencent light-bulbs. A regular old bright light-bulb would set me a rocking in just few minutes if I sat down next to it. So there is more to it than just the flickering, at least in my case. Sunlight never did a darn thing to me–I could be outside in bright sunlight all day without a single problem.
So I speculate that somehow it was the frequency of the light that was doing me in. No doctor really ever explained this to me, but since they know that migraine is a neurological disorder and has a tight relation to the occular nerve, the only explanation I can come up with is that somehow (at least while I was having migraine issues) certain frequencies of light cause my occular nerve to freak out and that in turn throws my vestibular system out of whack. My doctor kind of glossed over the details of my light sensitivity issues and was really just focused on stopping my migraines because he said all the light sensitivity issues would go away if we stopped my migraines (and he was right!). I was skeptical because I never had any pain so I wasn’t really sure I was actually having migraines, but it turns out I was. I guess as much as 30% of migraines actually occur without accompanying headaches, which can make them difficult to identify.
All I know for sure is that I’ve been on Topamax for 6 months and I’m pretty much 100% better. I’m hoping to come off of Topamax sometime in the next 6 months and see if I can go without the medication.
I would encourage you to keep trying the migraine medications. If amtriptyline isn’t working for you, there are lots of other medications to try. I tried verapamil and nortriptyline with no success at all before topiramate took away my light sensitivity.
What dosage of topomax were you at that it successfully took away the fluorescent light sensitivity? I just started at 25mg and it’s cutting some of the MAV symptoms but not a lot of them yet, including the light sensitivity. I would be very appreciative to find out what dose you had success with - and whether you decided to taper off of it after you got better and whether that worked for you? Thanks in advance for your advice about topomax. I’m really hoping this will be the one that works for me.
Hey liv. I’m pretty sure this forum is mostly in archive mode as everyone has moved to the Facebook group. But I started seeing a little help from light sensitivity at 50mg. I didn’t see really good results until 100mg.
I would say my declaration of being 100% better was not quite accurate. I would say 90-95% better is more accurate. I am “mostly” normal. I had been bad enough that it felt like I was 100% better. Now that I’ve been better for a while I can feel that I’m not really 100%, but it’s close enough that I will take it.
I might be able to get to 100% if I upped the Topamax dose, but it gives me kidney stone problems so I don’t want to increase the dosage any more than I have to. I seem to be counteracting the kidney stone problem with 1/2 cup of lemon juice daily (this is a doctor recommended thing but this can hurt your teeth so you have to be careful) but unfortunately I don’t seem to be able to taper off the Topamax without the symptoms coming back.
I hope the Topamax helps you out. It has made my issues mostly a non-issue. As I said, I still have 5-10% symptoms (especially if I don’t get good sleep), but they are very minor compared to what I was dealing with and very manageable.
Thanks so much for your message. That’s interesting to know that there’s a FB group. I’m not on FB, but I might consider joining to see if there are tips about how to get better from MAV.
That’s wonderful to hear that you got so much better at a bit higher of a dose than 50mg and that 100mg helped with the light sensitivity. I too have had a slight improvement with that specific issue at 50mg, but if I’m under a ton of fluorescents (particularly if there are CFLs in the room), I have a lot of problems and the vertigo and strange nerve sensations start to kick in.
I’ve been struggling with this for three years unmedicated until recently when I saw a neurologist, so it would be amazing to be able to get better finally if I can safely take the medication.
My only concern and additional question is that I have some vision abnormalities since being on 50mg - the eye stuff comes in the morning mostly, with some trailing light after light sources and blurriness. I was concerned by the side effects listed regarding sudden onset glaucoma. I had an eye exam an my eyes seem OK so far, but it’s making me anxious still.
I was just wondering whether you had any vision changes on Topomax? The tracers I get and blurry vision mostly is early in the morning just after I wake up, but it gets better over the course of the day. Did you notice any of that when you started the drug??
Thank you again for your advice. I hope I can get my life back too!
No, I had no vision changes. I know that one of the bad side-effects of Topamax involves eye issues so make sure you are having solid discussions with your doctor about that. I don’t want to be an alarmist, but the Topamax eye issue can be very serious. I have no expertise in it because I had no eye symptoms myself so I don’t know exactly what to look for.
I still have to be careful with lighting if I’m going to be in a room for extended (like all-day) periods of time, but I can go to the store that has fluorescents and stuff now without any problems. Back before Topamax, even going to the grocery store would trigger my symptoms in about 10-15 minutes. Now I suspect all day under bad lighting would still cause me issues, but an hour or two is ok. I have controlled lighting in my work space and I use a monitor that doesn’t use PWM (pulse-width modulation) to control brightness. I keep it turned down pretty dim. So I am still taking care of myself even on the medication.
One thing I found helped me even before I found the Topamax was sunglasses that filtered light at the far ends of the spectrum (essentially blue-blockers). I had no idea if they worked because they were just sunglasses or if the light-filtering was actually helping, but I wore them in public a bunch and they really helped.
Gosh, that’s really interesting, Jaime! I worry that my vision issues are abnormal on this medication, and I might have to look for another type of anticonvulsant to cope with these symptoms.
I have a history of allergy to sulfa so that really concerned me that I would be perhaps somehow intolerant of Topomax, especially because it seems to be one of the few medicines that helps people on here with light sensitivity and other MAV symptoms.
It seems to be an issue of getting my nerves to be less overexcitable to stimuli - such as the fluorescent light flicker. I’m exactly the same way in terms of fluorescents causing disequilibrium after about 10 minutes - and CFL lights are the worst for me because of the even higher rate of flicker.
Did your doctor ever suggest any other types of medicines in the same category? I am interested in whether clonazepam (also an anti-seizure drug) may be a good alternative for me if Topomax is causing disturbing vision changes. Did you ever try it? That seems like it might work on the nerves in a similar way, but it’s more addictive…
Thanks in advance for your advice. Really appreciated!!
Yeah, I don’t have enough experience to know if the eye symptoms you are having are serious or just a part of the medication or the migraine. That’s one to keep close tabs on with your doctor.
Scott used to have a great chart on here with a listing of all the medications that were considered front-line meds for migraine, and specifically MAV treatment. I know that nortriptyline and Topamax were both tier 1 meds which is why I was pretty happy with my doc when those were my first two trials. I didn’t respond at all to the nortriptyline. But the Topamax started working far quicker than I was led to believe it would–as I said I started noticing slight improvement by the end of week 2 on the medication. Most people take much longer. I do not know about Klonopin and migraine-- but that doesn’t mean much. There are a ton of medications that have been used. If you can find the chart buried on this site it was a great resource.
Is your dizziness more of a spinning, or more of a rocking sensation, like you are stuck on a boat and can’t get off? From my small amount of research on this board a few years ago, it seems like the people that are the boat rockers seem to have good success on Topamax at somewhere around 100mg dosage. The people that experience more of a true vertigo including spinning seem to have less success with it. I was a boat-rocker. It was like I was stuck on this boat rocking in a major storm that just wouldn’t stop. However my symptoms often would get better or even go away with sleep, and get much much worse when exposed to bright artificial light. Flourescents were the worst, but even bright incandescent would do me in if they were right in my face. Natural sunlight does nothing to me. Go figure THAT one out!
Thanks for letting me know about that chart! I’m actually exactly the same as you. I am a boat rocker. I have not really had episodes of spinning thankfully - more that when it first hit me, I had a few episodes where I felt like I was falling over and I couldn’t walk forward. Then I felt like I was always kind of ungrounded when I was walking. It was terrifying - and I noticed I was sensitive to fluorescent light for the first time in my life. I’d try to explain to family that it’s like a carnival ride you can’t get off - a constant sense of motion, which is made worse by certain things. I’m made dizzier by looking at a backlit screen. I am also totally fine in natural light, but artificial office or supermarket light is a nightmare, and CFLs (the fluorescent lights that are twisted) in some homes are kryptonite for me. I know when they are in a room because it can start to feel like my head is actually vibrating. I will get a sense of falling over. Low barometric pressure is also a problem for me, for whatever reason.
I’ve had this for almost three years (it started suddenly in early April 2013), so I’m truly hoping Topomax will also help me get back to normal. It’s so exhausting, as you know, to have this condition. Topomax helped me already at a low dose in stopping some of the sense of being off balance (and reduced my sort of head bouncing sensation under fluorescents), but I was worried about the eye stuff. I was reassured by a woman on here (Lisa/ “Zoology”) with very similar symptoms that she too had some eye things happen early on in her titration but that went away. I’m most appreciative to you both for the advice.
I’ll just get my eyes checked to be sure. I’m glad to know that 100mg seems to be the right dosage for people with these MAV symptoms. I also tried nortripyline but did not respond at all. In fact, I felt more dizzy!
Thanks again. I’ll just go back on Topomax on a low dose and titrate up slowly & talk to my neurologist in the winter about how I’m doing!
P.S. My last question! When/how do you take your doses? I don’t want to get acid reflux or a kidney stone if I can help it! I was thinking of taking one dose (when I go higher and need to take 2 doses) at 9pm a few hours before I go to sleep so I can drink some water, and then the other one at 9am. I was curious what your dosing schedule is. Do you take it with food?
regarding the kidney stones/lemon juice issue. To bypass the teeth, have you tried drinking it with a straw to avoid enamel erosion? I’m pretty sure you’ve already tried this but wanted to mention just in case.
Secondly, I am a chronic kidney stone sufferer (that’s why can’t even try Topa) and so is my dad, etc… One remedy we have used successfully is Parsley juice (well, you boil Italian parsley in water in a pressure cooker (or just a pot, if you don’t have the former). then you drink the strained water from it cold. The taste is hideous, so you might want to use a straw and even add lemon juice to it. The parsley juice has eroded many a stone in me and my father (he is an MD himself, and had before and after ultrasounds to prove). Just find out about the Parsley juice, though, since it might do something to the electrolyte balance, which the Topa already seems to mess with.
Finally, really quick questions:
can you please direct me some info/source about the comment: “I use a monitor that doesn’t use PWM (pulse-width modulation) to control brightness.” Where can I find a monitor like that and what am i supposed to do with the settings when I have one?
The blue-light filtering sun glasses - where do you get them from? I orderef FL-14 sunglasses from the Univ. of Utah Moran Eye Center but they don’t do the job. I feel that my regular sunglasses give me better filteration (and I walk around with them everywhere indoors except residences).
I don;t have FB, but might join just for the mvertigo group. What’s their link/address?
I was curious if you experienced any nasal congestion, sneezing, a scratchy/sore throat etc. (basically like it feels like you’ve got a bad cold or allergies) when you started 50mg of topamax or went any higher? Did this go away after a few weeks?
Thank you again for your advice about topamax, it does seem to help a lot, it just comes with these bad side effects I’m trying to ride out (in the hopes they aren’t permanent).
I was recently diagnosed with MAV. I have been constantly dizzy since March 2012. I have been going to ENTs and neurologists. The dizziness just became more and more aggressive. There are days were I am slightly dizzy and boom I am suddenly very dizzy. I explain it like a light switch being turned on.
I live in the dark. I can’t wait during the morning until the sunlight is over my home and not coming in through the windows. I never leave the house until I have a doctor appointment, the ride is torture! I wear 2 pairs of sunglasses and there has been times that I have blindfolded myself. When I walk I block the sun with my arm. I also will put my arm against my forehead to block the light and the horizon because when I am outside I am more dizzy. My husband drives me to all my appointments and helps me to walk. I have collapsed in the sunlight. When I ride at night, I wear my prescription glasses with a pair of sunglasses over them and I can handle riding in the dark a whole lot better than during the day time. When I am in the dr office or doing an errand in the store afterwards, I keep my prescription sunglasses on.
I was sent to the Owen’s Ear Center for 3 hours of testing and that is where I got diagnosed for MAV and when the doctor talked to me afterwards everything she said started adding up in my mind on my mannerisms and symptoms. I don’t always have a headache but I constantly feel pressure on my head. I was told I have low blood flow behind my ears and I was prescribed two medications for that but nothing for the migraine. I was told to stop caffeine and my 4 to 5 cigs a day (which I haven’t stopped) and to purchase a book called Heal Your Headache by David Buchholz, M.D. and to keep drinking as much water as possible. In this book it has a list of meals that you can eat in the back.
Out of desperation I had the Daith Piercing done and I can feel some relief already. I had it done Saturday and today is Monday. It’s helped more with balance at this time. It might be helping alittle bit with the light sensitivity but my eyes are not use to light so I am not ready to say it has helped. I walked outside this morning, down the steps and walked down the side walk and then I went and stood in the sunlight for a few seconds and then I came back into the house. I was just feeling uneasy being out there alone but I did it and that is a mile marker for me. One of my friends posted about the Daith Piercing on FB and it was helping her with her migraines and I texted my husband and I asked him after work would he take me to have it done. I had no warning bells not to do it. But I am going to tell you it hurts really bad but to me I didn’t care, I went for it for the greater good and to give it a try. My friend meet me at the tattoo shop were she had her’s done and she held my hands through the whole thing. At Least it’s not another pill to take.
When I was leaving my husband opened the door and the sunlight came in through the door and I ducked and one of the men asked me if I was a vampire. I told him basically yes, I live in the dark and I am hoping that this piercing will help me with that.
