posted
I have received many private messages, PM, about my extreme light sensitivity to:
lights, glare, and reflection as well as noise/sounds PLUS CHEMICAL SMELLS
I have shared my 36 years of experience tips with those of you. This would be excellent to leave your tips/suggestions here to share with others having our BUMMER symptoms.
Sorry, but I can not remember all the NICKNAMES of you who share my same affliction!
So please sign up here if your eyes are EXTREMELY SENSITIVE LIKE MINE and/or if you have extreme sensitiity to NOISE/SOUNDS .
I'm going to copy/paste some of my specific notes on this subject from "my newbie's links" I send to all newbies if they allow PMs. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! !
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable.
NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views! ********************************
EDITED: I added chemical smells also so folks could PM others with this SAME problem.
ROLL CALL of light/sound/CHEMICAL sensitivity members:
This way others may PM you for your advise, etc. I've been talking to 2 young people in their 20s, and hopefully, by posting this since my neuro lyme mind will NOT remember names; hopefully, you can correspond with someone else who shares your problems too! THANKS ALL! Bettyg
posted
Betty, I have light sensitivity and to a lesser degree noise sensitivity.
I did use a white noise CD and machine early on in my illness. I could hear every noise, so I used it when sleeping and it helped. No I am out in the boonies and there is no noise except for crickets.
Living in Texas, with the summer sunshine glare is hard. I have tinted windows in my car, wear sunglasses but still feel ill. Do you think I should get the glasses recommened by the Marshall protocall.
Driving at night is especially hard with the headlights. I feel traumatized by the light. Thanks
Posts: 628 | From the south | Registered: Dec 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I have sound sensitivity that comes & goes.
At one point I had to replace the ticking battery clocks in our house with clocks with sweep hands.
The click click clicking sound would totally get on my nerves.
The sweep hands are silent.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
My DH has extreme light/sound/smell sensitivity. We keep 60 watt bulbs in everything or lower. I keep a reading light for me for when I need it. Smell sensativity is extreme also. When I clean he has to leave the house for hours. I have not found any cleaning agents I can use that do not affect him. Sound is also a problem for him.
Posts: 7 | From Duplessis, LA | Registered: Aug 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Light is my most sensitive.
Things that help: Sleeping & napping with the black out eye masks help. I have the kind that allow for rapid eye movement. wrap around sun glasses hats you can put thin tinited plastic on tv's and computers screens keeping the shades closed on sunny days
Treatment helped but the light thing is still there.
Smell. Breathing threw my mouth helps in a public areas.
pee U list:
people that drench themselves in perfume Cleaning products The laundry & air freshner asile in grocery stores gas stations swimming pools
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Improving over time - was intolerant to all light, then could wear sunglasses indoors and be OK -
Now can go without glasses indoors, but squints intermittently.
Sound sensitivity improving at about the same rate. Slooooooooow, but steady.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
I also have the DARKEST pull down shades that light can NOT FILTER in for darkest while I sleep.
SERENDIPITY -- Yes, I would recommend going to their site and look at their photo collection of these NO INFRARED, NO BLUE LIGHT, & NO ...CAN'T REMEMBER OTHER THING!
If you don't wear RX lenses, they have some that fit close w/side shields.
Buying their NOIRS have been the best money I ever spent, and they are reasonable.
I believe with the DISCOUNT I paid $38 recently for the 901, light AMBER. Make sure you BUY AMBER/YELLOW ... it's better for the eyes.
NOTE: in a health brochure I received is this statement.
Wear sunglasses that BLOCK ULTRA VIOLET LIGHT, WHICH CAUSES CATARACTS! ***********************
adding onto Dana's PEE U LIST:
people that drench themselves in perfume; Cleaning products; The laundry & air freshner asile in grocery stores; gas stations; swimming pools; ```````````````````````````````` cigarette & cigar smoke PLUS THEIR CLOTHING SMELLS!; hairsprays & after shaves; certain foreign foods; spas; bathroom after it has been cleaned at work & cleaning solvent left overnight with it in!; spray paint; FYI - Betty couldn't go to a grocery store for 5 years until last Dec. 05 due to smells: smoke on people; perfume, cleaning products; etc.
Thank you all for contributing to my post. Bettyg
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posted
i have terrible terrible noise sensitivity and cant tolerate any strong smells, and yes light sensitivity too, but the noise is worst, i hate this!! wish this would get better radha
Posts: 392 | From New York | Registered: Dec 2005
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posted
I have terrible light sensitivity, I usually wear sunglasses inside. Noise sensitivity isn't too bad at the moment, but when I am herxing it is very bad. I can't tolerate strong smells either, especially things like perfume, paint, etc.
Posts: 263 | From UK | Registered: Mar 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Light is no problem.
Noise drives me out of my skull.
Can't think with noise.
Loud noises, sudden noises. Running water. The A/C in the truck, fer cryin out loud, has to be turned down in order for me to function to remember how to drive. I couldn't think to even talk to my LLMD until they shut the door to the HBO chamber because of the sound.
Noises that don't bother others startle me so badly that my stomach gets a giant jolt of electric/adrenaline.
No, I can't go through life with earplugs. I already have hearing issues.
What?
:-)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Jordan - extreme light & sound sensivity although the degree varies day-to-day.
Jake - extreme sound sensitivity and sometimes light sensitive.
I live in a quiet cave.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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bettyg
Unregistered
posted
up for Claire so she can join us and have someone else to PM to share her light sensitivities with..Bettyg
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I did have very severe photosensitivity,sound and did even and still smell odd smells occasionally...
The light sensitivity and noise are all but gone now... Still have blurring and floaters.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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bettyg
Unregistered
posted
up for newer members to sign up IF they have these problems so they can private message, PM, others in this list...Bettyg
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Betty,
I am light sensitive. I find that contrast is what really gets to me.
For example, I can tolerate being outside in the sun, but cannot tolerate the sun shining through a window so that part of room is dark and part light.
Also, I would like to get my hands on whoever is responsible for all this little lights on smoke detectors, DVD players, etc. I will not mention them all as to not cause someone who is not bothered to notice it.
Glare is bad for me.
I have good news on all this- I cannot afford expensive sunglasses. Mostly because I keep losing them.
Yesterday I found decent sunglasses at the Dollar Tree for $1 a pair. I now have them all over the house and in the car! I am wearing them right now!
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks for the "up" Betty!
I have all the problems you speak of. I'll have to try those glasses,(thanks for that)but I keep forgetting about them.
I have a couple of things I've found with regard to smells.
The only scent I seem to be able to tolerate is Lavender. I buy it at the health food store. I look for sprays without other strange things in it.
I've even mixed my own when I can't find any. I mix lavender essential oils (highland & spike lavender) with rubbing alcohol and cooled, boiled water in a spray bottle. (I'm sure there must be a better way, but this worked)
It actually helps me to breathe and has been the best mosquito repellent, I've found. (go figure?)
I've also found a wonderful product for eliminating smoke smell and other offensive odors in rooms, cars, etc.
It's called Multi-purpose Odoban. It also kills germs. The one I use says "original Eucalyptus scent", I don't know if there are other scents.
I found that if I spray it & remove myself from the area for a few minutes, it seems to fade quickly and take the other smells with it.
My mom smokes in the bathroom downstairs, when I spray in there I also mist the shower curtain & rug a little. It works like a charm.
I've also found that the men's cologne "PS by Paul Sebastian" doesn't usually make me feel like vomitting. (??)
I hope maybe this will help somebody else too. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
PS- When I used to be able to work, I found that a little lavender or vicks, right under the tip of my nose, used to help cancel out offensive people smells.
Sometimes I also used an Olbas inhaler (like the vicks inhaler, but only natural stuff). I get them from the health food store also.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
Ali and Char, thank you both for sharing your ideas! I didn't go to a classmate's party this afternoon due to the smells of perfume, smoke on their clothing, etc. The vicks tip is wonderful!
Keep the suggestions folks coming that you all use to cope. Bettyg
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When I was first NOT diagnosed with Lyme in 2000, I was told I had chemical sensitivities due to carbon monoxide exposure from a low-leaking old furnace and stove in our newly purchased home. However, I also had been ripping out ivy around our house and yard for months on end and been hit "mysteriously" by light sensitivity, sound sensitivity, fatigue, depression, anxiety, sleep apnea and oh...joint aches.
As time marched on, I tried an antidepressant for three months since I was told that I was over-anxious about my health (uh, yeah....I was sick) and depressed (that the ducks couldn't think outside their boxes). I went off the antidepressant, which had only helped me sleep.... all the time... and helped me gain 30 lbs without eating. I was also beginning to get this odd red/orange complexion and itchy skin.
And then, I began having balance problems along with all the other symptoms. I was once more NOT diagnosed with Lyme as the tests came back negative. Symptom progression sound familiar?
The light and sound sensitivity continued to grow over the years (along with the floaters and blurring and depth perception problems). I was told it was aging eyes (I'm 48).
The chemical sensitivity eased up when I de-chemicalized the home, switched to organic food, stopped having my hair colored (ammonia additive stinks!) , stopped swimming in chlorinated pools, put a whole-house water filter on, and allowed myself to comment without hesitation that I had to remove myself from the presence of those wearing scented products!
Finally found a LLMD who began treating me in April 2006. The light sensitivity eased up some on Rocephin IV, but came right back after I switched to a new drug. The sound sensitivity is constant, so I try to keep the kids quietly occupied or playing outdoors. (After which we do tick-check!)
It is truly validating to read about others trying to negotiate the same symptoms. Thanks go to all those posting and adding information/help. I cannot be without my sunglasses and look forward to getting my NOIRs in the mail.
My best thoughts and wishes to you all,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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bettyg
Unregistered
posted
wiserforit, good suggestions...
perms/hair coloring was the worst for me! I had an area in back of head where you could not put anything on it; burning/stinging 24/7. glad I stopped my perms/hair coloring
My niece cuts my hair; I have to schedule it on a day when she is there ALONE and NO CHEMICALS USED for perms, NAILS, or coloring hair! I almost passed out last Nov. & began my severe panic attack for 4-6 months.
Let me know what you think of the NOIRS after getting them; I don't go anywhere without them. Bettyg
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posted
Count me in for sure! Ugh! The foggier my brain is, the worse it is too.
Sublingual B-12, glutathione, and charcoal have been known to help me at times. My guess is neurotoxins cause my sensitivity, in part, at least, on top of my lyme, of course. Ugh!
I wish I had some clever answer, but, alas, I don't.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Had strong light sensitivity (to the point of getting nauseated if I saw direct sunlight). Now 100% gone. This sensitivity was awful, I couldn't really drive anymore, even with sunglasses. It got worse when the load of bacteries were high,I guess.
Sound sensitivity too. I couldn't help tears flowing when I heard a light scream from a child. It was LITERALLY painful. But I also relate that to either herxes or when bacterial load was high.
I'm 100% free from both. Knock on wood!! I feel herbs helped a lot on reducing bacterial load, and then the KMT did the rest of the job.
I'm glad to enjoy sunny days again. I was out during the summer, could enjoy the pool and garden work again.
Good luck to you all, I know it's awful to live with these symptoms. Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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bettyg
Unregistered
posted
Selma, thank you so much for sharing YOUR SUCCESS STORY with us all! We needed to hear and read that.
Would you consider copying your comments here and pasting it to the SUCCESS STORIES IN GENERAL by Melanie Reber. It would give others hope who haven't read my post here.
Glad to have your input from Switzerland with all that snow and brightness there! Bettyg
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bg2711
Frequent Contributor (1K+ posts)
Member # 1865
posted
Hello everyone,
I had the sound, light and chemical sensitivites to the point of being debilitated. I couldn't leave the house. I wore sunglasses in the house, had to rid the house of all chemicals and wore cotton in my ears to shield the sound. It was HORRIBLE!!
I thought this would never get better. Sounds would actually be very painful to me. I would keep all the lights off in my house because it would just make me feel so ill. I was hit with all three at the same time. They all came out of no where light/sound/MCS.
I couldn't even go to a store because of all the outgassing of materials, clothes, anything and everything would make me sick.
I am living proof that it does eventually go away. I am able to work again in a doctors office and live a fairly normal life.
My biggest problem is still chemicals especially bleach, gasoline, paint are my worst. I can pretty much tolerate the others without flipping out. Although, I do avoid all chemicals as best I can and will leave somewhere if exposed. It causes me to get anxious, foggy feel like I will pass out, difficulty breathing, shaking if exposed to really toxic stuff.
I wish you all better health. It took me about 1 1/2 -2 yrs. to get these under control. It was life altering for sure.
For me, I think the Plaquenil, Zith and Acyclovire helped greatly! I am off antibiotics and have been for about 1 yr. I only take Plaquenil now.
Wishing you all better health. Hang in there! Keep fighting. You will one day get your lives back. Best Wishes, Barb
Posts: 1131 | From Ohio | Registered: Nov 2001
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bettyg
Unregistered
posted
Barb, thank you for your heartfelt testimony of what you went through and how you overcame the majority of it where you could go back to work.
Thanks also for sharing what meds you were on, etc. That gives others an idea of HOPE of what they MAY expect or praying to achieve. Bettyg
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bettyg
Unregistered
posted
Up for Claire who wants to join this group and private mail some of you; she's been all alone dealing with this, and so happy I started this roll call group so she can learn from each of your experiences as well! Bettyg
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posted
I have light sensitivity, usually have to wear glacier, wraparound glasses indoors and at computer. I find these really help. I have blackout linings on my bedroom curtains as the sunlight early am drives me mad.
I dont have a problem with sense of smell, but noise sensitivity is a big problem.
Thank you for this thread, its very helpful April
Posts: 15 | From Europe | Registered: Sep 2006
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posted
*****FOR PEOPLE WITH EXTREME SOUND SENSITIVITY:****
The only way I could survive hearing even my own heartbeat was by wearing earplugs. THE FOAM ONES DON'T HELP. In any Target or Wal-Mart you should be able to find earplugs with a waterproof, clay/plasticlike constistency, originally meant for swimmers. Just jam them in your ears and mold the plug around the earhole to make it airtight. It's the only way to live, but the pressure can hurt migraines, so be careful!!!!
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
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bettyg
Unregistered
posted
Welcome April & Em to our group!
Em, thanks for your suggestion on what helps you get by. Bettyg
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bettyg
Unregistered
posted
Aggie Flash Member Member # 10628 posted 19-11-2006 05:28 PM
I just thought that, knowing about your issues with photosensitivity(?) (maybe I should be saying photophobia?) Oops... which one means your eyes are bothered by light?
What I'm trying to tell you is that for the first time in I don't know how many years I haven't had to run around turning down all the lights! I can walk outside without sunglasses!
This has happened during both treatments with Mepron. What I'm trying to say is that maybe you should be on Mepron! Maybe everyone else who has this problem should be too?!
Posts: 0 | From: still in Jersey? | Registered: Nov 2006
TO ALL: I thought Aggie's PM to me was worthwhile enough to post here and get your input.
ARE ANY OF YOU ON MEPRON? Has it helped your photosensitivities? Interesting discovery Aggie came across; don't you think?
Now to be honest, I'm NOT even sure what MEPRON is? So I'll have to do a search and see what it is; antibiotic, etc?
Thank you Aggie for your PM to me; I'll give this STRONG consideration in taking! My eyes have been SUPER BAD FOR 36 YEARS!
Anyone on mepron or TRIED it; please reply! We are all here to learn strategies in making life more tolerable to our disease!
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I am writing to describe my extreme difficulties with florescent lighting and other problems.
Many years ago I noticed that after shopping for food I would get "lost" in the store, disoriented. Later I realized what was bothering me was the florescent lighting and sometimes the buzzing of the lights.
Before I had to quit work I had offices in 4 different mental health centers and each office had florescent lighting. I bought small lamps with 60 watt bulbs and that was the only way I could stand to work in those rooms.
I have also gradually developed a complete sensitivity or allergy to the sun. Even 10 minutes without sunscreen will produce an itchy rash on whatever part of my body is exposed.
While driving, I always have to wear sunscreen on my hands as they are exposed while on the steering wheel.
I have a very strong startle response. A grandchild "sneaking" up on me and saying "BOO" can cause days of pain and fatigue. I wonder if this is because of overtaxed adrenals.
I recently had to move from a very peaceful, isolated home to a home nearer my family in a new subdivision. The constant noises of cars, construction equipment and even neighbors voices can become intolerable.
Night driving is excrutiating. All the glare makes me SO TIRED. My eyes feel swollen and hurt deep inside.
Then there is sensitivity to touch. I am the original Princess and the Pea person. I cannot tolerate any tight clothing (and since I continue to gain weight that is a constant challenge to have clothes that are comfortable.)
These are just a few of the sensory symptoms I have. I am sure there are many more that I just can't remember right now.
By the way, I have a positive IGeneX test but have not been able to find any doctor who can or will prescribe antibiotics. My symptoms are worsening but I cannot get treatment.
Hope my little story helps someone...just knowing you are not the "only one" can make such a difference.
My best to all of you, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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This is mostly about sensitivity to flourescent lights in stores.
Tincup discusses a remedy that involves peppermint oil and Altoid mints. Oh yes, and PINK tinted glasses.
The last reply on the thread mentions Irwin syndrome....I googled that and found fascinating information.
The remedy is on page 2, Tincup's post of February 25, 2002.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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bettyg
Unregistered
posted
Carol, SUPER FIND; we can't thank you enough for this post!
I'm copying just this little bit here from TINCUP, but folks, there are 4 pages of people with OUR problem and how they cope! It's worth your time to read it there, BUT ALLOW A GOOD 30 MIN. give or take! *********************
The main items you will need are:
A bottle of pure peppermint essential oil (or substitute such as an Olba's All Natural
eye glasses with a true ``ROSE colored lens'' or ``yellow'' lens,
and some strong peppermints made with real peppermint oil (Altoids Peppermints or Extreme both can be found in most stop and shop stores).
1. Peppermint Oil- Purchase a small bottle of a good quality peppermint oil. Place a dab under your left nostril.
The peppermint oil stimulates the brain and for some reason stiffles the reaction that is normally experienced while in stores. I have tried this method and truthfully, it isn't bad if used at home.
However, trying to apply peppermint oil to the edge of the nose while out and about is rather messy and the oil tends to drip and be a
I have found the Olba's Natural Inhalers (cost about $4.00) to be very effective as a substitute and much less messy .
The main ingredients are peppermint and other natural oils. They can be used as often as needed (not addictive) and purchased on-line or at some Health Food stores.
Olba's products from Penn Herb ( This is the only licenced importer of Olba's products in USA.
Look to left of screen and scroll down to Olba's products and click... Look for info on Pocket size Inhaler.. $3.95
If you choose the Olba's Inhalers, take a deep inhale in the left nostril about 10 minutes before going in the store (don't be afraid of it like I was at first.. inhale). Carry it with you in your pocket. Use it again just before you walk in the store. Use it again at the FIRST sign of discomfort, don't wait .
I also use a back up of the Altoid peppermints as needed and chew on them the entire time in the store. It seems if I keep sucking on the peppermints I am less likely to need the inhaler.
I have found this plan helpful while driving also. I now keep the mints next to the computer, in my vehicle, and in my pocket. The small tins of mints cost about $2.00 per tin.
I have tried Halls Mentho-Lyptus Ice Blue Cough Drops also which can be purchased for under $2.00 in the dollar stores (Just bought several bags for 88 cents each on sale at Rite Aid.).
They work very well, however, they are medicine and I am not happy using them on a regular basis. They did help with the sinus congestion when I needed help.
I have also used Atomic Fireballs candy which do the trick, but again... not on a regular basis. They are not as effective as the mint oil products and as mom said.. the candy will rot your teeth.
2. I also wear ROSE colored prescription sun glasses when going into stores. Through my , however I have not tried them.
I purchased a very cheap pair ($8.95) of yellow colored glasses from a local Rite Aid Store.. however.. my eyes are so bad.. I can't use them. I must have prescription glasses or I just can't see.
If your eyes are good enough to see without prescription glasses.. this may be an idea to try.
The rose and yellow colored lens stop the eyes from picking up flickering of lights that can trigger an attack . It is sort of like a dog whistle.
Normally, humans can't hear the high pitch of the whistle but dogs can. Those with neurological damage can sometimes ``sense'' the flickering of the lights that others would never notice even though they may not realize it .
Rose tinted reading glasses may also help those who have trouble with the computer screens. Mine have been rose tinted for years (since I first looked into this problem) and I seem to not have this problem, ever, when it comes to looking at the computer screen.
And it really is that simple. I have tried these suggestions and have yet to be unhappy with the results.
I am now able to stop at a store on the way home and go in without ``freaking out''. It has made my life a bit nicer.. and I am hoping it will help you too.
I am anxious to hear your comments. Good luck!
If you would like help finding a chiropractic neurologist closer to you.. there are some listed at the site below. I do recommend giving them a try.
Posted by Tincup (Member # 5829) on 26-02-2002 02:16 AM : *******************
FYI, I used ROSE colored RX lenses for my computer work for 5-10 years; worked great for me! I even had some fluorescent lights COVERED up since they produced so much light and I wanted things DARK!
Since learning of my LYME disease correct diagnosis 29 months ago, I learned of the NOIR, no infrared wraparound sunglasses in YELLOW, and got 2 pair: light and darkest they produce for outside! Been a life saver for me.
I'll have to try the peppermint as BUZZING LIGHTS really tick me off!
Carol, thanks for the GOLDMINE of info from our dear leader, TINCUP!
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posted
Re eye sensitivity -- it ended for me when I started drinking the Ultra Mangosteen juice 2 months ago(with a lot of water -- it's a detoxer). Within one hour, eye pain started to subside and focusing improved. 24 hours later, I was able to take off the dark glasses I have worn for over 2 decades.
This juice is anti-inflammatory and a strong antioxidant. I was just told tonite vitaminshoppe offers the best deal currently for it online.
Re sound sensitivity, I carry a pair of Mack's earplugs.
Re chemical smell sensitivity, clindamycin abx, 150 mg a couple times a day, is what takes down smell sensitivity for me. I have Lyme and no coinfections.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
Aggie sent me this info....
Mepron is the barand name for Atovaquone. I'm taking it with Azithromycin for Babesia.
I noticed the difference the first time but within a few days after finishing the treatment, I went right back to dimming all the lights again.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All this is alittle off topic but important-
I got Photo Toxic- (Google it) when I was taking doxi-
Even Light from my computer screen Burned my skin to a Krisp--
Going out side(Day) was imposiable- sun lite made me feel like I was in a Microwave on High-Im not kidding--
Then I read that Citrus-Cranberries can cause this Bad side effect to happen- Quickly--Hours--
Even Small amounts of citrus can cause this effect with cyclines-- Lemon in tea-A few drops of GSE ect-
So I cut out All citrus-cranberries Now Light is No Problem --
I think citrus makes Doxi Stronger- maybe absorbes better or something-
Once I quite eating citrus the doxi did not seem to work as good tho --
I also had the eye problems you all have described- threw treatment this has also gotten Much Better--
Hope this Helps--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I had severe sensitivity to light. I had to wear very dark sunglasses and stay inside. At times I saw big halos around any light source. Even normal lighting gave me headaches.
posted
I was looking for threads on light sensitivity and this came up along with the sound sensitivity and MCS.
Geez I felt like I hit the jackpot.
I was feeling so alone and now feel more supported.
I want to thank you all for adding your posts and bettyg for starting it.
I know the thread was a couple of years ago, it really helped me feel better so I'd like to add myself to the roll call
The worse is the light sensitivity, man it can be painful.
My face actually stings from the light, the brighter the light the more it stings and it just doesn't go away when I get to a dark room.
The stinging doesn't occur all the time but often.
Nausea happens with light, and I think fatigue not to sure on that one yet.
I wear a hat all day and nite and will not be without my sunglasses.
Infact I bought a pair of Maui Jims 9 years ago, the darkest ones they had.
the frames broke this year and I keep super gluing them over and over (they look hilarious one side the frame is just hanging there because it won't stick to the lense and I got glue on the lenses).
I will not give them up yet even for a couple weeks to have them repaired because i can not find any glasses that are as dark as mine. I'll look into the suggestions that are on this thread so glad for that.
So anyway, I need cars with tinited windows. Glares, contrast, flouresant lighting, TV, It all hurts and everyday it varies Sound is no picnic either.
I wear a piece of cotton in my right ear just to muffle some sounds and keep wax earplugs with me all the time.
Sometimes the light pain brings on more sensitivity than the sound and visa versa. The light and or sound bring on migraines.
Multiple chemical sensitivity was crazy for a while. Couldn't go anywhere.
I couldn't even drive 3 miles outside of where we lived without my throat swelling up or pains in my stomach because of farms or military bases.
Because I now control my envoirment at home and changed my diet to a candida diet.
My MCS is manageble but if I'm exposed to something over and over again or for a long period of time that I react I become more sensitive again.
I am so glad that all three things have improved from where I was in the begining and I still have a ways to go but it will happen.
Fancy
[ 08. November 2008, 02:22 PM: Message edited by: FancyRatFan ]
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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posted
This "roll call" was done in 2006, if there are others out there with one or more of the same symptoms please add your experiences.
I would love to hear more, plus I have an IME doctor and a Vocational Evaluation woman who think I'm full of @$^#$.
I think it will help the Vocational Evaluation woman.
I know it will help my divorce atty. She is doing her best to understand.
It would be greatly appreciated.
Thank you!!!! Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
There is a lot of information here about hyperacusis (sound sensitivity) in the thread below.
Be sure to read the links for the Hyperacusis Network and for SCD - Superior Canal Dehiscence. They are different but both relate to severe pain from even normal sounds.
For many with lyme, treating the lyme resolves the problem. In the meantime, suggestions for getting through it can be found here:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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And . . . for some with chemical sensitivities, the liver can be part of the reason. Sometimes just the regular liver support methods (that all lyme patients need to follow) are enough. If not, the thread below may hold some relevance.
Some people can't process out certain chemicals or toxins such as specific meds, molds, new carpet, scented products, etc. Porphyria is one condition that has many symptoms.
Porphyria can have many types and can be genetic or acquired from chemical poisoning. Porphyrins are normally in everyone as a process of metabolism. However, when EXCESS porphryins build up, that presents problems and can even be fatal in people without the necessary enzymes.
posted
Besides before mentioned symptoms to chemical exposure, I seem to react to computer, TV and phone exposure and have as symptoms severe burning of face, arms and legs, while my lips may become numb.
Usually worse when I have been exposed to synthetics, rubber, plastic, parfumes, etc.
The other day I had a fruit popsicle as I was dying for something sweet..immediate neuropathy, burning of my skin, "swollen brain", causing severe diuresis and subsequent dehydration. Keebler, besides avoiding foods and harmful toxins, how did you get rid of these sensitivities?
Even when on a very strict diet, omitting all allergy foods and living in an nearly all cotton environment, I get exposed to something and my system shuts down.
Please share what has worked for you and where did you find medical support for MCS-
my immunologist wanted me to take a sleeptest and see a psychriatrist. Is there a magic detox formula?
-------------------- Else Posts: 82 | From Florida | Registered: Aug 2007
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bettyg
Unregistered
posted
FOR NEWBIE who joined today with NOISE/SOUND problems!
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I had not connected xango with helping with sounds, lights, etc.
But, I am doing better since taking the xango.
I use some head muffs I got on line that people use who shoot guns to help when needed with sounds.
It is still not always an answer but helps. Have not tried putting in earplugs and putting on ear muffs.
Use dark sunglasses. Turn off lights when I was doing the therapy pool thing and turned off the pump and fan.
I go down roads with little to no traffice while in power chair.
And I replaced toxic cleaners with non toxic cleaners.
I signed up with Shaklee so have a web site if you are interested. I got a little at a time.
I also replaced my body water with a pitcher and filter and purchased a Klean Kanteen.
I need lots of quiet time.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
kam, thanks for your suggestions as well! yes, i use those construction head gear when i vacuum and when hubby used to use his noisy woodworking saws!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Ear protection is vastly underused by most people. Anything over 85 decibels for 90 seconds can damage our ears. That include hair dyers, some dish washers and always vacuums.
EVERYONE should wear plugs or muffs - or both - when around a vacuum cleaner.
===============
Remember that in addition to the vestibular (inner/middle ear/balance) system and neurological factors that sensitivity to stimuli is also deeply connected to adrenal dysfunction.
When someone is in adrenal failure, they are not even to have anyone talk to them as that requires too much energy. They are to be in a dark and very quiet room.
I read that over ten years ago in some medical book or journal when researching at a library. I've since tried to find that passage but cannot.
Still, as adrenal dysfunction is deeply connected with lyme, adrenal support is vital as a part of an overall recovery plan.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I've got it all.
Seizures from flashes or fluorescent bulbs.
I recoil from "naked" light bulbs - it's like knives to my eyes.
Also sounds trigger seizures as do diesel fumes or "air fresheners" in most taxis. Colognes also send me to the floor.
I also have porphyria, though. It may well be part of lyme and I hope it will go away, but all this is connected to the toxins, for sure and my liver's lack of ability to process Cytochrome P-450's
in addition to the lyme/neuro stuff.
-
Who would've thought?
---
What helps me the most? Magnesium, andrographis, allicin, fish oil and steady protein supply.
I had well over a year of light sensitivity so bad that I couldn't leave the house, and had all my windows blacked out (they still are). I couldn't even open the front door without very bad eye and neuro problems for several days following. I couldn't use a computer or look at television.
The thing that helped me pull out of this mess was daily shots of methyl B-12, at 25 mg. Immediately the light sensitivity dropped off by about 50%. This past summer, after about six months of MB-12 shots, I gradually pushed myself to go outside. It wasn't easy. I started by sitting in a room with the blinds open, then after a time went outside for about thirty seconds, then a minute, etc.
I built up the time each day, and soon I was taking off my sunglasses, then rolling up my sleeves. By the end of the summer I was sitting in shorts with my shirt off and I had a tan for the first time in years. I "herxed" (or something) a lot from the sun exposure at first, then, later, it made me feel much better. Also, my body temp each afternoon went up to anywhere from 99.4 to 100.3. This after years being stuck in the 96-97 range.
The Noir glasses, in retrospect, made the light sensitivity much worse.
My sound sensitivity has come and gone, but it never approached the light sensitivity.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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bettyg
Unregistered
posted
no more muscles,
thanks for all your personal experiences what you learned on your own!
i also had 2 months of b12 shots; painful; and they did NOT help me at all.
noir sunglasses made it worse for you! that is really puzzling on that one.
glad you made significant strides in dealing with these things and for sharing them here for all to read!
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posted
Light/Sound/MCS/Startle/ and Vibrations *************************************** Robin, I've not investigated Mangosteen, but I will now.
Carol in PA ~ TU for Tincups post. Pink tinted glasses for me.
AliG ~ My sister uses Lavendar for skitters in the Bend Oregon area.
Betty ~ T U for this post!
Ticking clocks tick me off. Fridge has a special Kill switch now. Dishwasher only runs when I go to my cave. Washer/Dryer operate in A.M. when I go walking. I wear ear plugs & sometimes mask to walk + sunglasses. Only Borax worked for MCS for months. -- It's harsh on fabrics though.
Water fountains inside and outside - turned off. Florescent bulbs replaced in home to old fashioned bulbs. No more hair dye, perms, hairspray, deodorant, lotions - I use coconut products on my skin & lips
I tested too high on Beauty products for my head per the QXCI. So will soon switch to more earthy, safer product.
No more swimming pools, hot tubs unless we buy our own Not tub and use Food Grade Hydrogen Peroxide in it.
Daytime - nap with eye mast + ear plugs if noisy - Been using ear plugs for 10 years now - Gift from hubby - Bose Noise Cancelers (helps in car/airplane) Blinds pulled in daytime to use computer. Tinted glasses while at computer (now I want pink ones) I don't stay at relatives anymore & certainly not in hotels - worried about bedbugs, noise, smells, etc.
Separate Water filter on shower head Hubby used to leave dry cleaning in garage. - After reviewing a DVD from Detoxamin, I hope he stops taking his clothes to drycleaner - we absorb poisons into our skin.
At my worst, I used a drop of tea tree oil under my nose in order to give our cat that stinky canned food she loves.
Bleach, gasoline, paints, varnishes, all perfumes, hair products are my worst still, but I can handle more chemicals than 1 year ago. Thought I was going to die Feb. 2008.
Like Robin, I have Bb, but only Brucella other than Candida and Viruses - oh yes Dr. F's new bug did test positive for me.
Vibrations from my own voice used to keep me mute for days. Now vibrations from vehicles keep me home. It makes my ears/head ring & buzz more loudly. Ear plug go with me everywhere.
Medical mask goes with me to grocery store, when I can handle the car vibrations.
Posts: 212 | From Arizona | Registered: Jul 2008
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posted
Light & noise sensitivity hear, at times very severe resulting in having to wear very dark wraparound sunglasses indoors....AND earplugs. I also have noise cancelling headphones for the really bad days.
I always wear earplugs to bed which helps "some" with light sleeping wake up noises.
Summer time light is the worse. We use a special darkening film on the vehicle windows in order to get me to doctor appts.
I also use large billed hats that help shade my sunglass eyes. I look like something off a cartoon Iam sure, but hey it works.
At night we make sure all the blinds are down and shut the bedroom door...anything and everything to darken the room as much as possible. And, I sleep with a room darkening mask on top of all that.
It is a lovely sight to behold. My poor hubby.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
grace and jam,
thank you for sharing all you do to COPE with these disgusting side effects of lyme!
best wishes to you both on sharing so much of the same PAIN from having these extra sensitivities.
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posted
If you have chemical sensitivities, check out http://www.environmentalmedicineinfo.com. The one page flyer has a lot of tips. Written by a md who has multiple chemical sensitivities.
Anyone know if the mcs goes away if you get rid of lyme? Would love to hear success stories! THX.
Posts: 70 | From U.S.A. | Registered: Dec 2008
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posted
Me too - I'd also like to hear if mcs went down considerably for anyone who treated Lyme.
I noticed when I first started clindamycin that it significantly reduced my sensitivity to smells. I found myself standing next to a smoker and not jumping away. Not that that's a good idea to stand next to cigarette smoke, but still, I was impressed!
But this effect has not continued, even tho I'm still taking the clinda. I can no longer stand next to smokers or much of anything with a smell.
Additional question for this mcs site: I am reacting to fabric with itching and hives and can only wear a few of my old clothes, washing them in hot water.
Does anyone have this kind of sensitivity, and if so, what have you done at all to reverse it? I would imagine this is liver stuff. I am awaiting results from a fancy liver bloodtest I recently had.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Clothing has a lot of chemicals including dyes, formaldehyde for wrinkle resistance, disinfectants, etc.
Sometimes airing the clothes in hot sun for days/weeks and washing in hot water w/baking soda and non-fragrance detergent like Seventh Generation (never use fraganced laundry products-kiss of death!) multiple times removes enough of the chemicals to make them tolerable.
Posts: 70 | From U.S.A. | Registered: Dec 2008
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Don't use Regular Seventh Generation, you can try Delicate Care. Regular is made with enzymes, and anybody with mold allergies is allergic to the enzymes which are bioengineered from a bacillus and have a protein coating similar to mold according to Jeffrey May (a healthy home expert).
I use Biokleen--very nice for me.
I use Real Purity makeup foundation--very tolerable. I use an unscented lip gloss. And eyebrow liner. No more mascara, even from Hauschka or a good brand, makes my eyes water. So does Real Purity eyeshadow powder and I need to do a little research, I suspect a cream powder that is natural would be okay.
Fabrics: I can't get thrift shop clothes anymore which in NYC I used to love to do as upper east side thriftshops had fabulous high end clothes for cheap from very wealthy folks. But they often had dry cleaning residues, perfume residues, and sometimes mold residues from where they were stored, all mixing together. Uggggg.
I get good cotton, linen, wool and silk clothing. I try to get washable clothing so I can keep it clean and it doesn't absorb odors from everywhere. I air dry my clothes on racks as everybody uses Bounce dryer sheets in my building and ruins the dryers for me. I can't use public washers because the same people put SO MUCH scented detergent and liquid fabric softener in, which ultimately sticks to the drum and coats it and gets into my clothes. Ugggg again.
I am sensitive to new appliances more so than before maybe they're all made in China now with toxic cheap materials. I had my bf and my doormen offgas my new quartz space heater for several weeks, and I got a used good condition portable a/c, and so on. I often purchase used but sometimes it has scents from the people who used it as if the stuff was stored next to a Glade plugin . Again, uggg. What are they thinking? These scents are chemical and bad for us.
Honestly, I got a crockpot/slow cooker off ebay and the thing smelled like cheap perfume and I couldn't wash it off with bleach solution or softscrub or anything and I finally threw it out. I got another and it was fine. I ordered natural beeswax candles and they came smelling like aromatherapy candles that made my eyes water and nose start running. I guess since they're all made in the same factory room they absorb the aromatherapy oils anyway, or maybe they're also all stored together and stacked together. Sent them back.
Sometimes I've returned a set of napkins or a box of rice because the entire thing was drenched in the odor of scented detergents. GROSS. This never used to be this bad.
The MCS drives me a bit nuts but oddly it is sort of erratic or inconsistent. I get my hair colored and that's fine, I bring my own Framesi and my own shampoo unscented, because the salon shampoo which is scented almond makes me GAG.
I don't have light sensitivity thank god.
I do have noise sensitivity and my bf seems to secretly think it is one of my burdensome eccentricities and I was born with the ears of a dog. LOL but sometimes not. I sent him this thread yesterday. If I'm in the bedroom and he's in the livingroom eating potato chips out of the bag I can't stand the sound. Unfortunately he has to be reminded again and again, to put stuff into a BOWL and not eat nuts or potato chips out of the crinkly crackly bag they came in.
However maybe I do have the ears of a dog who knows. When I was little I could go in department stores and hear the alarm system, which apparently is unusual for humans.
I think the MCS is a cominbation of liver being overburdened by biotoxins, AND glutamate upregulation from the bugs.
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that is really puzzling on that one.![[Wink]](wink.gif)
. Again, uggg. What are they thinking? These scents are chemical and bad for us. 
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