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successful treatment for light/noise sensitivity?
- Thread starter Gavman
- Start date
Hi Gavman
Ive got lots of problems with light/noise sensitivity but dont know much about it (also, my pupils constrict and dilate all day long, so i cant see in the light and have to wear sunglasses all the time).. do you know of anything that can help that? I have head that this is a result of neurotoxicity and is likely to settle when everything else is better, but this takes ages. As a short term fix, i did get custom made tinted contact lenses and ear plugs so I can sometimes leave the house without having a breakdown due to the light/noise.
Iva
Ive got lots of problems with light/noise sensitivity but dont know much about it (also, my pupils constrict and dilate all day long, so i cant see in the light and have to wear sunglasses all the time).. do you know of anything that can help that? I have head that this is a result of neurotoxicity and is likely to settle when everything else is better, but this takes ages. As a short term fix, i did get custom made tinted contact lenses and ear plugs so I can sometimes leave the house without having a breakdown due to the light/noise.
Iva
This is a very difficult problem. It is worth checking thiamine activity (not blood levels) with the transketolase test from King James Lab near Cleveland, Ohio. Low thiamine conversion can effect the ears particularly. Supplements with b6, P5P, riboflavin and curcumin (Longvida) are worth pursuing. It is also worth testing for Lyme disease through the new culture test at Advanced labs.
Chris
cfspatientadvocate.blogspot.com
Chris
cfspatientadvocate.blogspot.com
Sallysblooms
P.O.T.S. now SO MUCH BETTER!
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5HTP did a WONDERFUL job for me and noise sensitivity.
I've been prescribed items for both the noise and the light sensitivity, but not supplements. Your average hearing therapist and orthoptist aren't likely to be that well up on supplements, and I've never heard that they would help anyway. They took somewhat different approaches.
For the noise sensitivity, and also the tinnitus, the hearing therapist explained that it was basically a form of deconditioning (not that she used that word, and it's not a muscular thing so don't think of the usual deconditioning crap that is thrown at us), or at least that this was an important factor. I was used to living alone in a quiet flat, and as the noise sensitivity got worse, I used earplugs when I went out. The earplugs meant that my brain ended up even more used to silence and unable to tolerate noise. She said that earplugs should never be used unless the volume of the noise is so loud that it will physically damage your eardrums, e.g. on a construction site. Instead she gave me in-ear white noise generators, and a carefully increased programme of white noise therapy. For the tinnitus, by the way, she pointed out that the body is naturally a very noisy place, only usually we can't hear it. With tinnitus, for some reason your brain is listening to bodily noises that it shouldn't normally pick up on, so again we're retraining it in that respect. The white noise therapy was for both the hyperacusis and the tinnitus, and it worked very well indeed. I'm still subject to sensory overload, and have to be careful around noise, but it's much better than it was, and I no longer need ear plugs at any time. Since in-ear white noise generators are expensive and I think prescription only, I'd suggest trying an MP3 player with a recording of white noise on it. Bear in mind that you will need to take off the headphones/earbuds if you want to talk to anyone.
For light sensitivity, I saw an orthoptist who specialises in ME visual problems. As far as I know, part of the visual problems are muscular and part are neurological. It's actually very common for people to have bad reactions to the omnipresent fluorescent (low energy) light, it's known to set off migraines and epilepsy too and is generally a very poor light source for humans. She spent a long time assessing me with trial coloured lenses (you can also use a Colorimeter machine but I don't get on with them, too confusing) and prescribed a specific tint for me. When I first saw her, six or seven years ago, it was a fairly strong blue. When I saw her again a few months ago, she came out with two colours, a purple or a grey. The purple was easier to read by, but the grey made it easier to look at the fluorescent light I'd brought with me. I decided to go for the grey, partly because I can have that made up by any opticians, and the specs are currently in the process of being made up. Both blue and grey seem to be commonly preferred for filtering out the effects of fluorescent light, so it may be worth going to an optician which has the usual set of trial lenses and has fluorescent lighting, and spending a while messing around with the trial lenses to see if any of them help at all. My local optician has trial lenses in grey, brown, dull green, yellow, pink and blue, for instance, and in several different saturations for each. If you don't need prescription specs, you can also just buy cheap sunglasses and try those out. With the pair that's currently being made up for me, I couldn't get an answer from my orthoptist about which saturation to go for as she's currently on medical leave, so the optician has been helping me out. We're going to start with a 50% tint and adjust from there if needed.
I'm usually OK with sunlight, except sometimes during or just after a migraine, in which case I will use my tinted specs. I find that using the tinted specs cuts down significantly on sensory overload experienced in shops or hospitals, to the point that treating one sense actually makes the others (e.g. sound) less awkward.
For the noise sensitivity, and also the tinnitus, the hearing therapist explained that it was basically a form of deconditioning (not that she used that word, and it's not a muscular thing so don't think of the usual deconditioning crap that is thrown at us), or at least that this was an important factor. I was used to living alone in a quiet flat, and as the noise sensitivity got worse, I used earplugs when I went out. The earplugs meant that my brain ended up even more used to silence and unable to tolerate noise. She said that earplugs should never be used unless the volume of the noise is so loud that it will physically damage your eardrums, e.g. on a construction site. Instead she gave me in-ear white noise generators, and a carefully increased programme of white noise therapy. For the tinnitus, by the way, she pointed out that the body is naturally a very noisy place, only usually we can't hear it. With tinnitus, for some reason your brain is listening to bodily noises that it shouldn't normally pick up on, so again we're retraining it in that respect. The white noise therapy was for both the hyperacusis and the tinnitus, and it worked very well indeed. I'm still subject to sensory overload, and have to be careful around noise, but it's much better than it was, and I no longer need ear plugs at any time. Since in-ear white noise generators are expensive and I think prescription only, I'd suggest trying an MP3 player with a recording of white noise on it. Bear in mind that you will need to take off the headphones/earbuds if you want to talk to anyone.
For light sensitivity, I saw an orthoptist who specialises in ME visual problems. As far as I know, part of the visual problems are muscular and part are neurological. It's actually very common for people to have bad reactions to the omnipresent fluorescent (low energy) light, it's known to set off migraines and epilepsy too and is generally a very poor light source for humans. She spent a long time assessing me with trial coloured lenses (you can also use a Colorimeter machine but I don't get on with them, too confusing) and prescribed a specific tint for me. When I first saw her, six or seven years ago, it was a fairly strong blue. When I saw her again a few months ago, she came out with two colours, a purple or a grey. The purple was easier to read by, but the grey made it easier to look at the fluorescent light I'd brought with me. I decided to go for the grey, partly because I can have that made up by any opticians, and the specs are currently in the process of being made up. Both blue and grey seem to be commonly preferred for filtering out the effects of fluorescent light, so it may be worth going to an optician which has the usual set of trial lenses and has fluorescent lighting, and spending a while messing around with the trial lenses to see if any of them help at all. My local optician has trial lenses in grey, brown, dull green, yellow, pink and blue, for instance, and in several different saturations for each. If you don't need prescription specs, you can also just buy cheap sunglasses and try those out. With the pair that's currently being made up for me, I couldn't get an answer from my orthoptist about which saturation to go for as she's currently on medical leave, so the optician has been helping me out. We're going to start with a 50% tint and adjust from there if needed.
I'm usually OK with sunlight, except sometimes during or just after a migraine, in which case I will use my tinted specs. I find that using the tinted specs cuts down significantly on sensory overload experienced in shops or hospitals, to the point that treating one sense actually makes the others (e.g. sound) less awkward.
taniaaust1
Senior Member
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I myself found that avoidance was the best answer to those issues... its neuro issues. As my ME improved some.. so did they. Too much of either was so overly stimulating that they could cause me to crash more. It all added to the symptom I call "overload".
I guess its thou like all things with our symptoms.. supplements may help some with something but dont do a thing for others.
I still carry around earplugs in my bag to use if it became necessary.
I guess its thou like all things with our symptoms.. supplements may help some with something but dont do a thing for others.
I still carry around earplugs in my bag to use if it became necessary.
PhoenixDown
Senior Member
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- 456
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- UK
I tried 5HTP and it did nothing me any of my symptoms.
Ugh yeah .
At the moment it's 8 PM .
Struggling with the light . It's too freaking bright. I just moved and don't have a dimmer . And rely on people to get me stuff. Ugh.
It's like I'm a vampier . The light really hurts my eyes. Yet too little light ain't good either .
At the moment it's 8 PM .
Struggling with the light . It's too freaking bright. I just moved and don't have a dimmer . And rely on people to get me stuff. Ugh.
It's like I'm a vampier . The light really hurts my eyes. Yet too little light ain't good either .
The worst light for me is driving without sunglasses which seldom happens because I always carry them with me and they are dark RX, but this winter has been very cold and snowy and the reflection in the house is grueling. I close blinds, doors and curtains to control it.
Came across this article .
http://articles.sun-sentinel.com/20...hen-022711-20110225_1_lutein-zeaxanthin-glare
Worth a try ?
http://articles.sun-sentinel.com/20...hen-022711-20110225_1_lutein-zeaxanthin-glare
Worth a try ?
I tried 5HTP for insomnia when I was at my most severe and it was awful. It felt like it was trying to THROW me into sleep but my sleep mechanism wouldn't allow it to put me to sleep. So I had this awful back and forth thing happening to me which was quite scary. I haven't tried it since. Not sure if I want to try again.
I've not found anything helpful for noise/light sensitivities. Just removing myself from as much noise as I can and sunglasses for light.
I've not found anything helpful for noise/light sensitivities. Just removing myself from as much noise as I can and sunglasses for light.
PDXhausted
Senior Member
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- 258
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- NW US
Alpha lipoid acid helps with my light and noise sensitivity. I take it along with a bit of vitamin C for good measure, although its the ALA that does it for me.
Hmmm checked it out . Looks intersting. Has to do with insuline resistance. I'm now eating every 2 hours a small meal otherwise I don't manage . This might indeed help.
Saw it before but somehow didn't buy it yet .
Any side effects ?? I'm hyper sensitive to anything at the moment .
Saw it before but somehow didn't buy it yet .
Any side effects ?? I'm hyper sensitive to anything at the moment .
How much do you take @PDXhausted
PDXhausted
Senior Member
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@Grigor It also helps with neurological inflammation, which I'm guessing is where my sensitivity is coming from.
I'm hypersensitive as well. I open up a 100mg capsule and sprinkle it, probably about 1mg, into a glass with some water. Then I drink it slowly. The first time I took it, I got a little of a flu-ish feeling, but it didnt happen again after that. If I still have some sensitivity, I might take another sprinkle. But again, I am very hypersensitive.
My husband (doesn't have CFS or hypersensitivity) has some neurological pain, and takes 600mg of an enteric coated slow release formula of ALA. He has no side effects and it helps his pain alot. So you just have to test it and see what works for you.
I'm hypersensitive as well. I open up a 100mg capsule and sprinkle it, probably about 1mg, into a glass with some water. Then I drink it slowly. The first time I took it, I got a little of a flu-ish feeling, but it didnt happen again after that. If I still have some sensitivity, I might take another sprinkle. But again, I am very hypersensitive.
My husband (doesn't have CFS or hypersensitivity) has some neurological pain, and takes 600mg of an enteric coated slow release formula of ALA. He has no side effects and it helps his pain alot. So you just have to test it and see what works for you.
PDXhausted
Senior Member
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Sure! I hope it helps you.
I just remembered !!
I have found D Ribose helpful, in that it seems to help lessen inflammation in my muscles which seems to also help lessen PEM and I think because of this also helps ease abit of the neuro-sensitivity stuff. Worth trying but D Ribose doesn't seem to work for everyone though. I have found it a great help. Anything that helps abit is soooo good.
I have found D Ribose helpful, in that it seems to help lessen inflammation in my muscles which seems to also help lessen PEM and I think because of this also helps ease abit of the neuro-sensitivity stuff. Worth trying but D Ribose doesn't seem to work for everyone though. I have found it a great help. Anything that helps abit is soooo good.