Hi all, I’m new to this site and am a fellow MAV sufferer on and off for 12 years but hideously bad since having my 2nd child 3 yrs ago!
One thing I’ve noticed is that I have become intolerant to any fluorescent lighting/bright lights and even going outside on a cloudy day can be problematic. I avoid supermarkets, most shops (to the relief of my husband), as 5 mins under bright lighting can completely disorientate me and leave me staggering about afterwards. I am find that I’m becoming dependant on my sunglasses and starting to feel a bit self conscious about always wearing them. All my lighting at home has to be from low wattage lamps as I can’t cope with overhead lighting and enjoyable things like going out to a restaurant have become a nightmare for me. Starting to lose my confidence and dread going about day to day life as feel so awful with it! Am undergoing vestibular rehab which has helped a bit although I dread the walk through the brightly lit hospital corridors to get to it as it has become so bad. Does anyone else have constant light sensitivity with mav or is this just me? Have had all eye tests mri’s etc but all come back fine so don’t have a clue what’s going on. Sorry to ramble on on my first post and sorry to read most of you are really suffering with horrible symptoms too!
Hi all, I’m new to this site and am a fellow MAV sufferer on and off for 12 years but hideously bad since having my 2nd child 3 yrs ago!
Hi Pheenie -
I have horrid light sensitivity ! Fluorescent lighting is deadly for me - can’t go for grocery shopping etc. for more than a few minutes or else I’ll get a floating or rocking feeling and have to suffer for the rest of the day. So I go with my husband and get out asap, often times by the time we go to the register, I head outside and wait for him to pay. Even under the LED lights in my kitchen (on a bad day), I feel like someone is pulling the top of my brain with a magnet upwards toward the light. Computer screens are tough and mine are always very much dimmed.
I used to be a teacher and yes, walking in the long hallways with excessive fluorescent lighting used to do me in. So I no longer teach, switched to part time and do administrative work at school (mostly from home as my supervisor knows that’s how it is or I have to quit). I ALWAYS have to wear sunglasses when I am in a commercial building outside the house now - at work, at any store, bank, etc… any and everywhere where there is fluorescent lights. People keep asking me if my “eyes” are any better at work, and I keep trying to explain my eyes are fine, it is my migraine brain .
Incandescent lights don’t really bother me. Glare on a gray, cloudy day has sparked a migraine with aura in the past. Bright sun on and off itself doesn’t bother me (even though I must have my sunglasses on to tolerate it), but getting hot under direct sunlight will make me feel lightheaded and bring on a headache.
Fluorescent light along with not eating constantly (i.e., even before feeling hunger) are my two biggest triggers.
I think it is super brain sensitivity that makes our brains get extremely “irritated” by the artificial lights, like the brain can simply not take all that stimulation.
I hope this makes you feel better that you are not the only one .
Thank you so much for replying. So sorry to hear you’re struggling with lights too and it that it affects you as badly as me. I was starting to wonder if MAV could actually cause such constant/bad light sensitivity but it would appear so! think I’m just struggling to adapt to my ‘new life’ of having to factor in lighting wherever I go!! Reading some of your comments was like reading about my life. I often dash out of shops leaving my husband at the register as I feel like my heads spinning and the floors moving etc.
Definitely agree with the brain being overstimulated as mine can also be triggered by patterns/noise/movement/low blood sugar etc. Trying to figure out what to do work wise because of it as due to computers/lighting etc it narrows job choices down a lot.
I’m also going to try different meds for the migraines in the hope something will work. Already tried amitriptyline but it gave me such bad side effects I had to stop. Will let you know if I find one that helps. It just seems so crazy how much mav has affected my life. Used to fly around the world on my own with work without a second thought and now freak out about the thought of going to tescos with my 3 yr old lol! Am a positive person so trying to remain so but soo frustrating some days!
Really hope you see some improvements with your migraines and thanks again for your message. It really means a lot to know I’m not alone in feeling like this although sorry you suffer too! Thanks again, Pheenie
I am glad you are positive - you’ve got to be. I am a very negative person by nature and that’s changing now - I have to hold on to hope because that’s the only way to move forward. In fact, in my case, I think this is one of the reasons that this happened to me - to turn me around and make me start thinking positively. I know everyone has a different thing to learn from what happens in life.
You made me laugh when you said you can’t go into the shops to the relief of your husband .
I have been on Nortriptyline, up to 50 mg. now, it’s helped somewhat, but not with the light sensitivity at all. I asked the neurologist for a drug that would take care of the light sensitivity alone but he said there is no such med…lol… So, yeah, we will need to keep trying different meds.
I am thinking some sort of anti-seizure drug (Gabapentin, Lyrica, Depakote, Topamax, etc.) might be what your and my agitated and angry brains might need. I haven’t tried one yet. All my other drug trials (Propranolol, Zoloft and Pizotifen) have been botched.
Do let me know if you find something that works, please, as our sx are so similar. I promise I will do the same, God willing :).
Hoping for your (and my) speedy recovery.
Hey Asli and Pheenie,
This is my first posting here-I too have a severe problem with fluorescent lights (especially compact fluorescent lights, or CFLs) and backlit screens, such as computer monitors, TV screens, etc. making me very dizzy, causing strange head pressure and a feeling of a bouncing head. I get vertigo in grocery stores and places that are lit up with fluorescents as well. My MAV was sudden onset in April 2013, triggered by a case of vestibular neuritis. I’ve been dealing with this for almost three years without medication. It’s been really tough. I am hoping to find out if there is a medicine that will reduce the fluorescent light sensitivity and MAV symptoms such as foggy-headedness and disequilibrium. Mine become a lot worse during low barometric pressure days too-I don’t know if you both notice that as well?
I was prescribed nortriptyline in addition to topomax recently for MAV. I did not seem to get any better on nortripyline when I tried it this past week and was more dizzy than ever. I was prescribed topomax by another neurologist (25mg for three weeks, titrating up to 50mg the fourth week), and I started it last night and seem to be feeling less dizzy but still sensitive to fluorescents. I’ll stick to it and let you guys know if it helps a lot at a higher dose for longer or not. Please let me know if you guys start any medication that helps with the fluorescent light issues!
I’d love to be able to watch TV and go to the movies and shops again without feeling the MAV symptoms get worse. I also don’t have a problem with incandescent lights or natural light - it seems that the rate of flicker in fluorescents is the problem.
sorry to hear you are going through this but reassured to have your support, you know what I mean?
From what I understand, you are saying you are getting on Nort. pretty much simultaneously with Topa, correct? Usually it is not advised to start or to up the dosage of two meds around the same time since you won’t know which side effects are caused by which med and also maybe you will be fine on only one, so why be on two?.. So am surprised your doc. is having you do that. Also, one week on Nort is too short to judge, people often feel worse when starting/upping the dosage of a med for a week or two, so it is still early days for you.
I never took Topamax but, we have a long standing successs story on the forum, who has done MARVELOUS on 50 mg. of Topa, no more than that. Check his posts out. Do a search (there is a search icon on the top right corner - you might have seen it already) . Username: Rich2008.
I will let you know if I get on a med that helps with our issues, please keep us updated about how you get on, as well.
To answer your question re:low barometric pressure, it is interesting that you ask since I have been suspecting it for a while. I live in the East Coat of the US (New Jersey) and October is when we start feeling the season change - temperatures drop to freezing at night and in the 70’s during the day - big variations, and the winds come in. Plus, we start getting storms and cloudy days (low pressure). I have noticed a couple of weeks ago during a bad storm that my head was all over the place. As soon as the rain broke out and started pouring, I felt like my head go better almost instantly - maybe a coincidence? So, I have a question for you: when you say: “Mine become a lot worse during low barometric pressure days”, do you mean you are affected day to day or more like for that whole stretch of period when there are low pressure days? I am asking because I have been feeling lousy the entire month of October, especially the last two weeks and I can’t pinpoint any triggers - I take the Nort., sleep schedule the same, have been very good with my diet… So am wondering if it is the change of the season and the fact that we have had stormy days peppered in here and there and the weather has been fluctuating a lot. Not sure if I am making my question clear, but I guess I am asking if a particular month (or stretch of a few weeks) that has the “trend” towards lower baro-pressure weather affects you or strictly the days of low baro-pressure and you are fine the next day with no residual impact. Do you get a residual impact? I hope you can help me with this.
I hope your med trial goes well and the Topa and/or Nori does it for you :). Let us know and I will do the same if anything gets better on my end…
Thanks so much for your reply. I do feel that low barometric pressure (especially thunderstorm) days make my symptoms a lot worse perhaps because of the pressure on the nerves on my head and inner ear. It makes me off balance and have a worse disequilibrium/full-headed feeling! I don’t think it stays for a day afterwards but any day with high humidity affects me as well. It’s like thickness of the air makes my dizziness worse.
Fluorescent lights do the same thing-I think you guys are right about the issue being overstimulation of nerves that are inflamed or something. The best drug, therefore, would seem to be one that would reduce nerve firing. Lyrica is one drug I’ve read about helping people with fibromyalgia so that might be an idea if topomax doesn’t work in reducing the symptoms esp. light sensitivity - I don’t think nort. is going to help us because it’s not an anti-seizure medication.
I think any drug that’s given to an epileptic would be a good bet and perhaps could be given to us in a lower dosage to work on our nerves at their hyper-excitable state. I’ll keep you posted about topomax. I’m going to stay on that one at 25mg/night for three weeks to really slowly titrate upwards and then do 50mg/night for three more weeks before seeing a neurologist in December to discuss how I’m doing.
Thanks so much or mentioning the success story of topomax at 50mg - I hope that dosage might work. I’d also read another story or two where people had to reach 100mg/ or 200mg/ day so I hope that I’ll be okay at a lower dosage b/c I’m worried about the side effects. But at this point, my life is so tough with the light issues that I’m willing to try it at that dose! I have an allergy to sulfa meds possibly, but I am hoping I’ll be ok on topomax and not have any vision issues, which scare me the most about topa.
Stay strong and let me know if you guys have a decrease in your symptoms on anything including nort.!!
thanks for responding, too :).
I am thinking I’ll try an anti-seizure drug next, as well. I sometimes have my brain “shake”. It only happens when my eyes are closed at night. I literally “see” my brain vibrate sideways with my eyes closed…don’t know how to express it otherwise… lol… only if someone lives through it will they know what I mean. Each time I have that happen, I’ll have an awful day the next day starting with as soon as I get out of bed. So, though I don’t have seizures, i am pretty sure my brain is having strange electrical activity. I’m waiting to see a headache specialist in December, who will probably change my med from Nort as it hasn’t really helped. And I’ve been thinking some sort of anti-seizure drug but don;t know which one. I am very very med sensitive, don’t know if i can handle Topa. In fact, Nort has been the ONLY drug that I was able to tolerate, that’s why I stuck with it. I tried Propranolol (made me feel awful and the longer I stayed on it the worse I got - tried it on two separate occasions), Zoloft nearly killed me (I became non-functional, like my body wasbshutting down), and Pizotifen made me much worse right off the bat (when combined with Nort) as well.
So, I don;t know what I can tolerate and dread trying new meds. But it seems to be the only way…
I am glad you are able to tolerate Topa. I have kidney stones, so even if I were to tolerate it (which I doubt), the kidney issue might contraindicate it for me anyway.
Hoping for your success (and all of ours). I’ll be in touch…
Topamax is a tough drug - but I seem to tolerate it better than nort, in a sense. Nort. was making me more dizzy. I do get some strange vision issues with it in the morning already (blurry a bit) but will get an eye dr. appointment to check on how the eyes are doing perhaps to be safe. I don’t have any existing kidney problems. It does seem to make me feel less dizzy and sensitive to my computer backlight - at 25mg that is a good sign. So anti-seizure meds aside from topa might be a good option for you too. I will see if higher doses help me more without having too many side effects.
Clonazepam is also an anti-seizure med that I’ve though about asking my dr. about but it’s more addictive than topa. I don’t think it’s too addictive at a low dose though, and it might help with our light sensitivity. It doesn’t cause kidney stones I don’t think, and it reduces anxiety, I think. This condition does cause a lot of anxiety so I definitely am always on the lookout for drugs that help with that! Lyrica is another idea I’ve thought about - it’s also anti-seizure. But it does have a long list of side effects! I’d be more inclined to try clonazepam myself before lyrica. I’ll keep you posted about the topa!
Have a good weekend - hope the weather stays calm and dry up there in NJ! I’m down in the South so it’s often pretty humid here even in the winter!
Yes, I asked my neuro about the Clonazepam a while ago - he said he will not give it to me since he doesn’t want me dependent on it… I bet it would help a lot, though…
The march on continues… for the drug that helps, that is . I really hope Topa is it for you!
I’ll be in touch. I hope you have a good weekend, too!
Sorry I’ve been a bit off the radar the last few days but have been struggling with a hum dinger of a migraine whilst staying with the inlaws. (Sure the two aren’t connected in any way!! )
So sorry to hear you are struggling with light sensitivity too Olivia, it’s just miserable isn’t it!
Reading through your posts have been very interesting as topamax was the next drug I have been hoping to try as not keen on the anti depressants or propanolol as it made my blood pressure too low.
Oddly I can also relate to the head zaps upon falling asleep and often jolt awake like my brain is overactive so maybe this is another joyous symptom of mav!
I also agree with the change in weather causing it to be worse. I live in England and have been really struggling since the weather changed in September. (Mind you it’s a much smaller change than you will prob both experience as we go from overcast and cool to overcast and cold lol!) despite our summer not being great though the natural light is so much better in the summer and it doesn’t get dark till 9/10pm at its peak whereas now the clocks have changed it is getting dark at 4/5pm and my MAV has been pretty horrendous since. I can’t live my life waiting for summer to come back so am determind to find something that will help us all.
I’m also going to give acupuncture a try as have heard some positive results from others. Just wish I could remove the light sensitivity issues. I find that any glare from anything just overstimulates my brain and then I know the dizziness will hit.
I find mav very isolating as unless you experience it first hand it is very hard to understand how much it Impacts someone. I would just love the world to look ‘normal’ again as my vision often feels like I am looking at it through warped glasses etc. my eyes cn often feel stiff and out of focus even though everything is in focus. (If that makes sense!)
I also miss shopping and going out for meals etc. it almost feels like mav wipes out all the fun stuff sometimes. Having young children has given me no choice but to struggle through the bad days which I sometimes think is a good thing although it adds to the stress level which is bad.
Talking you you both and realising that I’m not alone is comforting although im sorry you’re both suffering too. To everyone else we look well which can really add to the lack of understanding. I am starting to get used to the odd looks when wearing sunglasses inside a building on a rainy day so it’s teaching me to be more thick skinned. Every cloud and all!
I will keep you posted with my trials of meds and will keep my fingers crossed that you will both find something that helps you too!
Best go as I am just about to have 30+ children descend on my doorstep for halloween so am getting prepared with the buckets of sweets, treats and yup you guessed it… My sunglasses woo hoo!
Have a lovely weekend ladies, take care, Pheenie x
Thanks so much for your replies Asli and Pheenie. It’s very interesting that we all have light sensitivity and MAV symptoms. I know how very tough they are!!
We’ll figure it out! I’ll give topamax a shot over the next 2 months and let you know how it goes. Otherwise, clonazepam is something I’m willing to give a try if someone will prescribe it. That’s the problem isn’t it - doctors don’t think it’s bad enough to give you something they worry about in terms of dependency, but honestly I am willing to try anything that would help calm the nerve firing when it comes to light sensitivity, barometric pressure and other stimuli.
Have a wonderful Halloween and let’s definitely be in touch about finding a solution to this.
thanks for chipping in - I feel like we have a sis thing going on, with the three of us now …lol…
I’m going to keep this short - about the acupuncture: I have tried two separate acupuncturists before I knew what was wrong with me and they were both disappointments (one of them made me sit in a detox foot bath massage chair and the pounding of my neck and shoulder on that day has left me with somatic tinnitus in my left ear that’s been there every day since April 2014 - but that’s another story).
Anyway, my dizziness was caused by physical therapy directly (I was having migraines at the time and didn’t know since they were not “classic” and my shoulders were tight all the time yadah yadah yadah, so the neurologist sent me for PT. After the first or second session, my dizziness began (episodic), then became chronic in Sept. of 2014).
I think my brain was already fried with the migraines and then the hard pushing on my neck caused spasming in my brain stem and/or some sort of vestibular nerve/structure of the ear and ever since, couldn’t come back to its senses, so to say - still being hypersensitive and in a vicious cycle. So my point is, b/c the neck played a role in messing me up, undoing that damage might possibly help. I think acupuncture can help “channel” the diverted things in the right direction, so to say. I found a Chinese Acupuncturist who works at a medical center as a physiatrist as well and is a certified physical therapist, so I am thinking of giving her a try for acupuncture. Since she is a physical therapist and a physiatry doctor as well, she might be able to better understand what goes into migraine with a vertigo component. I will make an appt. soon - I have to pay out of pocket 100% but if it helps, it’s worth it. I’m really keeping my hopes low, though. Just something to try.
Will keep you posted. I DID tell you this was going to be short (lol…), right?
Take care, ladies.
Just happened on this post yesterday. I was rather surprised when I first joined this forum that so few people on here mentioned light sensitivity, I was beginning to think I was part of a very small minority although it is always associated with Classic Migraine. Here I found not one but three extreme sufferers all very similar to how I used to be. I suffered extreme light sensitivity for a couple of years with chronic MAV but fortunately the Propranolol eventually brought it back under control. Apparently beta blockers and Amitriptyline are both known to be effective for light sensitivity so I was lucky my GP put me on Propranolol as a preventative.
Was a question regularly on my lips. Nobody could answer. Even the neuro-otologist who diagnosed me with MAV wouldn’t commit to why I had light sensitivity. Said he couldn’t help me with it because he did know where it was coming from. My own GP didn’t want to duscuss it, kept saying was there anything else she could help with because she ‘knew nothing about light sensitivity. See an optician’. Opticians made up special percentage tinted lens and were very helpful in that practical way but couldn’t suggest a cause.
An impossible way to live long-term.
I’ve always been worse through the winter months. My episodic attacks nearly all occurred in the winter,
I wonder where are these people now? @Pheenie. I’d love to know how you are doing. We’ve so much in common. Helen
Good morning Helen!
One of my worst symptoms is / was light sensitivity and visual snow. I have had great success with the Ami to bring that to heel and now the Nort seems to keep it to a minimum as well. I still have some days that it seems everything is intensified including the visual issues. Agreed on the barometric change days, they seem to be the days I have more issues all around.
I do wish we would hear from some of the older members who have just gone on their merry way living a normalish life
Yes I have constant light sensitivity since MAV went chronic for me 2 years ago. Light sensitivity had been my most persistent symptom. It’s amazing how awful it can make you feel. I too can’t tolerate fluorescent lighting or supermarkets, I just end up dizzy. Amitriptiline has helped some, but it’s still there
What dose of Ami you taking and for how long? Might give a clue. Did you ever try the FL41 tinted lens? Are you sure it is light sensitivity because Ami should help there. Is it more Visual Vertigo? In some circumstances it can be difficult to be sure.
I’m up to 35mg , 6 months now. I’m guessing it’s not enough and I’ll need to go up again. I’m pretty sure it’s light sensitivity, but it can be difficult to describe these crazy symptoms. I used to have waves of dizziness when standing up talking to one or more people, but that seems to have gone away which is good! Haven’t tried the lenses, I really should, sunglasses made me feel worse
The dosage instructed I was given for Amitriptyline as a preventative was 50-100mg daily and you’d need maximum tolerated dose for 6-8 weeks before getting an idea how it was working,
When very acute, I’ve found wraparound sunglasses useful outside and in supermarkets, public buildings, ie hospital, dentist. At one time I used amber anti-glare wraparounds indoors when very acute and outside on dull days of high contrast, overcast backlit sky against dark, probably damp, ground. I couldn’t get on with FL41 lens at all. Everyone’s different. Obviously sunglasses aren’t going to cure Visual Vertigo. Helen