Fluorescent lights---do they make you symptomatic ?

[Guest Julia59]

Ok----here we go......I have over a long period of time been watching how fluorescent lights in big department or grocery stores affect me. My husband works for the government at the post office so he was off work today. We took a trip to Sam's wholesale to pick up paper towels and a couple other items. The lighting is intense in there, and when I got out of there I was sick---and so weak I could barely sit up.

Now I have been crashing with my POTS and other health issues for quite a while now---so this reaction has only gotten more intense for me. I tried to get my bearings in the car, and managed to shake it off a bit. I told my husband let's try to go to Kohl's dept. store because I felt a little better. We went there and the lighting is different---not nearly as intense. I couldn't believe the difference---I managed to get through it OK. I can only manage short trips because I have been struggling to hold my posture and tend to lean to the side when sitting---or tilt my head. Getting out of the house is getting more difficult because of all of this.

My pain in the upper spine and back of my head has been so much worse lately---as are my other symptoms with leg numbness/weakness---and now it's in the arms, and my coordination is getting worse also. I'm dropping everything and i'm having a very difficult time holding my head up. The only time I am comfortable is when I have something I can rest my whole back and head on----my couch is perfect for that and I can still sit up and just lean back and take the weight off my back, neck and head. My symptoms decrease when i'm in this position.

It is one of those things where you want the surgeons to be right so you can have the answers to help fix this stuff----but yet you wish they were wrong and there was a more simple answer that required nothing invasive. As you know from my rambling before---TWO NSGs think I need surgery but disagree on which part of the anatomy is more urgent---Dr. Heffez in Milwaukee said the Congenital cervical spine stenosis due to the developing myelopathy---but he also said the lower cranial area near the brain stem may need to be addressed, and Dr. Bolognese from The Chiari Institute believes I need a cranial/cervical fusion due to instability in that area, and now believes I may have cranial settling due to the EDS.

In a nut shell---I just feel like i'm falling apart---and the pain is getting more intense. I may resort to steroid injections of that area just to get the swelling down---I'll deal with the tachycardia from it. When I use ICE or drink a smoothie and have the slush in my mouth it's instant relief----but so temporary. Now I knnow there is issues at C1/C2-----and the NSG in Mich. even confirmed I have pannus formation on my odontoid bone at C-2----which means tissue growth from that bone being flexed forward too much and puts pressure on the brain stem anteriorly. He said it was subtle---well that might be true, but combined with a small posterior fossa--(aka-lower skull) and cervical/cranial instability---it can't be good.

On my MRI from May 2005 there were a lot of abnormalities on the upper spine---the whole cervical spine, and on the brain MRI mastoiditis was mentioned. This is an infection of the mastoid area in the middle ear---or inner ear---i'm not sure which. One thing I do know is that those tiny bones in there keep crunching---and I have ear pain all the time---plus I hear humming, buzzing---both low pitch and high pitch. The docs just blew it off---the local Docs------not the NSGs that take this seriously.

Now I have developed a habit of tilting my head to the left. Now if I TURN my neck to the left---then my breathing is affected, but now it seems the breathing is affected the more stess I put on that area.

Swallowing in becoming harder and harder to do. Typing this is terrible---I can no longer look up at the monitor until i'm done. I was told by one doc to not wear the hard cervical collar as my neck muscles would end up with atrophy----and then I really would have more trouble holding my head up, But both NSGs that say I need surgery said to wear it because my neck is unstable----and to wear it especially in the car.

I know all this sounds a bit dramatic---but it's the real deal---and i'm getting worried---and i'm not sure where to turn. I had several dental appointment back to back---and it seems that everything got so much worse after that. It's confusing because I did get a bit wiped out this summer---and really struggled---then all this recent stress.

I just feel I don't have much of a game plan---and I feel myself sliding down a hill. I see Dr. Davis---(my wonderful psychologist on the 26th---or before as he has me on a cancellation list). He has been helping me a lot---mainly just keeping my sanity through all this, but I think we need to focus on a game plan---and quick.

My BP hit an all time low two days or so ago---it was 62/48. I felt like a wet noodle and struggled to wash my hair. I bathe at night because I want my husband around in case I can't do it on my own. This is how bad it's been getting.

Just Venting---Sorry---but I am curious if any of you get worse with fluorescent lighting? I don't know if this is because of the pressure on the back of my brain stem------or this is a pots issue.

Thanks----------vent over....

Julie :0)

[Richland acres]

[Yes I do!! I can totally relate to you. I think i live in the same place as you...I have not posted in a while. Any ways the Walmart I go to is horrible with the lights. Its almost like it makes me disorinated. Its hard to consentrate or even focus. But put me in a different light I am better. I totally can relate to you. I also know what you mean by feeling like you are falling apart. I have a lot of the same symptoms and the pain is unreal. I can not even lay on the back of my head any more, it hurts so much, my head gets a head ache right away, it just pounds. I can only think its cause the blood is not traveling up to my head, almost like I cut off the supply when I lay on the back of my head. It sure is weird, but i am stcuk laying on my sides only.

I have no idea why the lights bother us, but I do know they are doing it. I try to avoid the ones that are so bright!

Brenda R.

[Jacquie802]

Hi Julie,

Flourescent lights are waaay too much for me. Walmart is a very very bad store for me. I have noticed that the flourescent lights, crowded stores, and large stores (I won't even go into a Super Walmart, since the regular size/lighting bothers me) bring on alot of symptoms, which last for days. I'm not sure exactly why it bothers me though, i just know enough to avoid them. Sometimes I can be in Kohl's for 10-20 min. cuz the lighting is better, then I just feel weak and faint all of a sudden. Wish I had something that helps to offer, but I don't, just want to let you know your not alone on this one .

Jacquie

[sally]

Hi Julie,

I'm sorry to hear that you are feeling so badly. I wish the best and hope you are feeling better soon.

I also agree that for me, Flourescent lights seem to bother my eyes and make me feel a bit off. I don't understand it though.

I don't have that problem under any other lighting, just flourescent. strange...

hope you are well soon.

[lizzy]

this aswerser why my hubby calls it my wall-passout out store. ever time he has taken me shopping ther i have passed out on him .ever thought off the lighting before.

thank you for bring it up

[Guest Belinda]

Walmart and Super Kmart are definitley no-no stores! (it isn't just in your head)!!

[OCsunshine]

I totally can't handle flourescent lights, either. I have unusually large pupils (I know, it's weird... I get comments on them from strangers all the time!! "You have really large pupils!" So weird....) Anyway, bright lights in general hurt my eyes, and I wear my sunglasses ALL the time.

Flourescent lights are like double-whammies. Walmart is awful, but it's not just them. Quite a few large stores (around me, at least) have the flourescent light thing going on. They are bright and very energy efficient, that's why stores use them so often. I had a doctor appointment yesterday and I noticed when I went into the exam room the lights were AWFUL. They were the brightest flourescent lights I have EVER seen. It was freakin' ridiculous! I just hung in there, and squinted awfully, and tried to get the heck out of there... if it was my neurologist or BP, I would have said something, but it was my GI doctor, so I figured mentioning it was kind of useless. I noticed there was only one light-switch, too, so it was either looking into a toxic sun or having the doctors be completely in the dark. (Sometimes rooms have two lightswitches, and each switch controls a different side of the room so you can at least make the lights 'dimmer'.)

So I feel your pain. They are awful. I had a headache for ever after I left that stupid exam room. :-/ Schools also use flourescent lights. I rememeber being in agony all through high school because those lights hurt my eyes and head soooo bad!!

Even this house we just moved into, has 2 flourescent lights in the kitchen!!! Fortunately we are doing renovations and those flourescent lights are OUTTA here soon. I dont ever turn them on now, even though they are still installed. I just put a soft lamp on the kitchen counter and that's what I use. My husband loves flourescent lights because they are cheap/energy efficient. :-/ Jeesh. I have explained to him a thousand times how they HURT me and DONT USE THEM!

They must find another form of electric light that's softer and also energy efficient....

[ariella]

too much stimulation=bad POTS day

ariella

[dizzygirl]

yes I also have a horrid time w/ fluorescent lights.. they makes me feel weird for one.. and make my vision screwy...I get very symptomatic in stores with these kinda lights...

walmart... Hmmmm.. we donot go there during the day anymore.. as its to crowded.. and hot.. and it makes me feel potsy as well as irritated! So we go at night.. now (open 24hr.).. and I use the powerchair... and I usually have about a 20 minutes limit before I get potsy.. so we are in and out....and the lines are generally shorter....if we stay longer then that I get symptomatic.. and extremely exhausted.. and pain levels go way up! so that is like my one outing for the week!! pathedic!!

Julie hope that you feel better!

[Wufflebear]

Fluorescent lights are definately a trigger... When I was a kid I used to say it was too many squares...in the mall mainly...we did not have a walmart, so we always went to the mall.

Cold water also instantly helps me, but I agree it is short lived.

At work I have two over my desk. I had them unscrew one of them and it is definately better but sometimes I have to turn out the lights entirely and use my little desk lamp. With both in I am miserable and the headache is rapid and terrible. Yuck.

[persephone]

I get migraines with flourescent lights- especially if there is no cover on them- tubular flourescent lights are the worst for that. I used to dread going into the University library in St Andrews because within 20 minutes my head woudl begin to throb

[Guest Mary from OH]

Julie,

I'm so sorry that everything is so overwhelming right now. I'm kind of at that point myself too, otherwise I would have something much more supportive and "wise" to say. But, I am here for you. And I think you still have my cell # if you ever want to chat...

And, with regards to the fluorescent lighting. You are NOT crazy!!! The lighting is a HUGE trigger!! Both the frequency of the light and the NOISE it transmits are triggers. So, when you are in a store that has them, there are SO many - you are dead meat!!

My biggest pet peeve is when someone needs to change a bulb and it is flickering even MORE than normal!! It's like INSTANT migraine!! (as if JUST having the fluorescent lights aren't bad enough!)

LOTS OF HUGS AND PRAYERS SENT YOUR WAY!!!!!

PS - I think we should all make a petition to BAN fluorescent lights!!!! LOL

[Mandy]

I have found that wearing lightly tinted sunglasses in places that are too bright has helped me a lot! And, if a place is too overstimulating, or overwhelming, noise-wise, I pop in some of those little ear-phones (I think they're called "ear buds") and listen to soft music. It just tones down the environment and makes it easier to deal with.

Also, don't forget to always bring a portable snack, like a granola bar, and a water or Gatorade bottle whenever you go out. That helps me too. I hope these suggestions help you all as well - put on those shades and be cool!!

Best Wishes,

Mandy

[momofpreciousboy]

[i have noticed this too. Has anyone mentioned it to Dr. Grubbs or any of the specialists and know why it would bother us? I have the worst time going to the stores at night, I assume it is because they seem brighter at night. I also have to sleep on my sides, as if I sleep on my back, it seems as if I quit breathing and wake up. According to all CT scans there is nothing wrong. I wonder if this could be a POTS symptom. I hope things get better, and it sounds like you have been to some wonderful drs. I understand about the screen, I could not type and get on the computer at my worst. We have a flat screen now, but It still bothers me. JenniferTX

[Jacquie802]

Hi,

I mentioned to my Cardio last Monday when I went to see him that I get dizzy/faint, nauseas,etc. when I go into stores that have flourescent lighting, crowds, or even if the store is just too big (like some of the walmarts,etc.) and he said that it could be that I get easily over stimulated. A few of the times I actually walk into some things (not fun @ all).

Supermarkets are bad for me as well, due to all the products stocked on the shelves. Wish there was something that could help. I can't wear any type of glasses because I had surgery for my nose years back and it still is very sensitive if I try to wear sunglasses. I do always carry a cold drink of water or gatorade though. All I know is to stick with the 20 min. rule!

Jacquie

[Guest Julia59]

Thanks for all the replies---I sill can't believe the difference between the lighting at Sam's wholesale and Kohl's. It was a different world. Kohl's has a sort of shading device that tones them down a bit.

At home I have those new fluorescent lights and they save a ton on our electric bill---and they last forever. Those don't bother me because they have a lamp shade over them---or they are covered with something.

It's only the EXPOSED lighting that bothers me. In the basement we have one that like to buzz---it's a covered cealing light. The light itself doesn't bother me---but the buzzing does. In the Docs office they are really bright and they sometimes bother me. Mostly the grocery stores, Wallmart, Sam's, Kmart----very brightly lit stores. I do OK in some of the finer dept. Stores like Dillards, JC Penny, ElderBeerman---ect, it just depends on if the lights are shaded or covered in some way.

For some reason i'm really bad at the Mall and the lighting is not that bright. My legs were really bad one day---and the weakness was out of control. There was no rhyme or reason to it, I just couldn't walk, and we had to go. I just think the myelopathy is getting worse---and I have bad days and good days.

On the bad days I do the Cha Cha Cha a lot. My husband calls it that because when I start to lose my balance I sort of do this little shuffle dance to regain my balance. If I have to do that a lot---it's time to sit.

Bright sun light is bad too----but much worse when it's hot out. Meijer is the ALL TIME worst store I have ever been it when it comes to lighting---------------some of them have a very loud buzzing sound too.....

Thanks again for all your replies---it looks like a lot of us have the same problem

Julie :0)

[LYNDA66]

THANKS FOR YOUR OPEN-NESS LADIES. I AM VERY GLAD TO KNOW THAT I AM NOT CRAZY WITH THE LIGHTS AND OVER STIMULI. WHEN I MENTION THAT STUFF TO SOME OF MY DOCS THEY LOOK AT ME LIKE I HAVE 4 HEADS. THANKS FOR THE ADVISE. I'LL TRY IT AND I WILL LET MY HUSBAND READ THESE EMAILS HE THINKS IT IS IN MY HEAD. I AM SO SICK OF PEOPLE THINKING THESE SYMPTOMS ARE IN MY HEAD. IT IS REAL TO ME AND OBVIOUS OTHERS AS WELL. THANK YOU AGAIN FOR BEING OPEN.

[gwen]

hi, yes the lights are horrid. Have you ever seen those huge electric power lines? well iff you stand underneath one at night with a light bulb in your hand it wiill light up. smithsonian mag had a 2 pg pic of fluro lites stuck in the ground under the major line and all are lit. I think the pots make us light / electricity sensitive and even where your home is situated can be of harm. I have read report after report that secondary elec isnt bad for health but Ive done the lite bulb trik and it made a believer out me. My gram used to say to stay away from the elec lines and elec blankets etc and i brushed it off but i don even keep my alarm clock very close to yhe bed because of the extra elec. Dr Weil has touched on this subject. I wish more people realized it could effect you.

[Mrs. Glass]

I cannot go into a store without getting sick. I very seldom even try to go anywhere anymore. Last week my daughter took me to Walmart and I no more got in the wheelchair until i was sick. I could barely sit up. Between all of the lighting and the sounds and smells it was just too much for me,

I had to get cleaning supplies as my husband told me that we were totally out so i decided to try and stick it out and do the shopping for him. That was a mistake! I am still not over it, and if that was not enough, the motorized wheelchair broke down in the back of the store, and they actually wanted me to walk up to the front to get another one. My daughter blew, big time. She finally told them that if they didnt bring me another one that someone would have to carry me to the front because I could not walk it.

Needless to say I will not go shopping again. It is just too much for me anymore. But yes flourescent lights do trigger a lot of symptoms in me. Even the ones in the doctors offices.

Have a symptom free day, Vanessa