Hypersensitivity to Sound

[Jody]

We have two battery operated clocks at either end of our living room. Each one ticks quietly away the seconds, each just slightly off from the other, so it's a "tick-tick", "tick-tick", "tick-tick" all day long.

A normal person would not take much note of this but a person with CFS is not normal. And during one period of my illness a few years go, I was driven from the room by the ticking of the two clocks. It was too loud for me and penetrated too intensely for me to be able to tune it out, couldn't concentrate on my book or my own thoughts. The ticking would drill through my head.

For awhile Al took the batteries out of them so I could stay in the livingroom.

 

[Sushi]

Jody,

I identify completely! Any sudden sound sends my sympathetic nervous system into crisis alert. Like when you accidentally run your mouse over some ad on an internet site and a loud voice assaults you--heart jumps, the whole alert cycle. And, as you say, even small repetitive sounds--thanks to whoever invented good earplugs.

And how about strobing light patterns? Those are real hell for me. It is a problem for me when driving if the sun is low and passing through trees, creating a strobing affect. I keep a baseball cap in the car just to point the bill to block out this effect.

Sushi

 

[Jody]

Sushi,

We had a computer for awhile that would make a type of grinding, staticy sound off and on when in use. Nobody else seemed to be affected by it but the first day it sent me off to my bedroom in tears because, now I couldn't even be in the livingroom anymore, I felt like a captive in my bedroom.

Al couldn't modify it so he just wouldn't use it when I was in the livingroom (I was only out there a few hours a day at most at the time). Eventually I was able to tolerate the sound. But at first it was impossible.

Don't get me started on lights and things flashing. When that happens on TV for instance I have to close my eyes or I get very bad virtigo and disorientation, head fog, body stone, etc. It's not as bad as it used to be but it still happens. Yes, car lights at night, anything sudden and dramatic is bad. And some websites (even some for chronics like us) have some things on them that cause me to avert my eyes, or get off the page as quickly as I can, I certainly can't read with that going on.

 

[Angel]

ticking...

The clock that ticks is in a room far away.

I had to move the one in the bedroom into the bathroom and close the door so I don't hear it. It will keep me awake.

The electric clock has a thick heavy towel over it so there is no light shining out.

The smoke alarms have two layers of recipe cards taped over the small operating light.

I close the bedroom door at night, because I can hear the refrigerator, and the air conditioner. I put a heavy rug under the door to keep the sound and light out.

I have a black out shade that extends 6 inches beyond the edge of the windows. Underneath that are window blinds. On top are sheers or room darkening curtins.


If I don't do this, I don't sleep. My father was very sensitive also to sound. If we dined out, and upon entering the establishment the music was too fast or loud, he growled and did an about face so fast, we all knew he used to be a Marine. We would eat somewhere that was quieter.

No problem here with sensitivity to light or sound...

 

[Jody]

Before Al bought me my laptop, I would sometimes borrow my daughter Sarah's. Hers has little flashing lights right up front on the keyboard. I would have to put a pen over it (covered them perfectly) in order to stay focused.

 

[Victoria]

......And I thought I was a bit perculiar too!

All your emails struck a chord with me (even though I don't have CFS - just FM. Well, not JUST FM - lots of health problems).

Repetitious sounds like a dripping tap drive me to intense irritation.

I am currently sneaking "time out" (from typing at work) & our new receptionist's booming voice echoing on the wooden floor (all the rest of the office is carpeted) drives me insane. Her screeching/raucous laughter is the loudest I have ever heard. I had to tactfully mention to her only this morning, that she may not be aware of how voices echo on the wooden floor in the reception area of our new office.

She is a delightful lady - just loud.

(alright, I'm being picky).

Our office air conditioning (which I hate) has a constant low '''wind" sound whistling through the overhead ducts, & it's only mid afternoon when it clicks off for a minute or so, that you realise how "loud" it is all day.

Our office is bright, but has special energy saver fluorescent overhead lights - these seem to be softer than a normal fluorescent overhead light, and don't worry me at all.

But at home, I have soft, low wattage lamps in my bedroom & loungeroom.

And when I owned a car & was driving on country roads many years ago, I had to stare at the white lines in the middle of the road (to try & evade the bright car lights from oncoming traffic).

It's a wonder I didn't have an car accident.

Strange to read all your posts now & remember all those years ago when I started have these light, sound, (food, chemical, perfume) sensitivities.

Do you have the special environmental energy saver light globes & fluorescent tubes in the US? (excuse my ignorance, but the US & Australia seem to be worlds apart in so many ways)

Apart from the lower environmental impact, they really are much softer on the eyes.

Stores (in Melbourne, Australia) only stock the energy saver globes now (all others are banned, although I'm sure there must be stocks left in older, less frequented stores).

......and I wear sunglasses outside (even on most winter days). I always thought it was because I wear contact lenses & my eyes were more sensitive because of this - maybe I've always been "light" sensitive?

Victoria

 

[Jody]

Victoria,

Not sure if you're talking to me or Angel or Sushi, or maybe all of us.

I just checked both girls' profiles to refresh my memory as to where they're from and, surprise, they are BOTH living on islands in Florida. Maybe y'all know each other?

As for me, I'm in Canada and while Canada and the US have alot of similarities, we also have many differences too. We do have the energy saving bulbs and flourescents here.

About the sunglasses, I have read that it's a good idea to take off the glasses for short periods of time and let the sun hit the old eyeballs, it helps to tee up our -- hmmmm, I think, our pineal gland? -- and keep the melatonin right. This helps alot of things, one of them being helps to correct our day/night and sleeping dynamics. (Lord, I will never be a good scientist, I can never get the terminology right and I forget half of what I read. My fall-back terminology when I start to get lost is "thing" as in the day/night "thing" and the pineal "thing"). Bear with me and I'll be alright.

 

[Victoria]

Hi again Jody,

I'm "talking" to anyone who's interested (or to all of you).

I've just spent quite some time trying to jump in & out of this site & the various sections. (I have a bit of spare time this afternoon).
Hard work.
Or am I just technology challenged?

Actually, I'm getting a headache with all the intense concentration of trying to write & work at the same time.
Just shows I'm much better since 2004 (when I was only well for the first 3 weeks in April in the whole year). I can now process several actions at once, but I have to mentally process much slower than 20 years ago. Sometimes, I stop in mid sentence because I can't remember what I started to say. And my internet posts can go all over the place as my thought processes jump from one subject to another.

You're correct with the "sunglasses" thing, Jody.

And I was also found to be low in vitamin D in 2006, so have to take a vitamin D supplement. I am very, very fair (for an Australian) & get sunburnt in around 10 minutes exposure to sun. I have a 15 minute walk to/from work each day which is absolutely perfect exercise for me this year. I tend to wear long sleeves (even when it was 46degrees back in February of this year in Melbourne & we had the horrific bush fires) & try to walk on the shady side of the street. Both my parents have had numberous skin cancers (one malignant), my sister-in-law had a melanoma removed & then later lymph glands in her groin when cancer reappeared. I could go on about cancer which has affected/killed several friends, family & work colleagues - Aunt, cousin, best friend's father, both her husband's parents, about 7-8 staff here where I work...........

So, you see sunglasses & covering clothes are important to me.

They even make sunglasses for babies & toddlers. Not sure that I agree with Toddlers & Babies wearing them! I think they should be well covered & out of the sun anyway. Too easy to get heatstroke here in the summer. And many people just flake out from pure dehydration. People don't drink enough water (in this consumer society of fizzy, caffiene and guarana laced soft drinks). The hole in the ozone layer over this part of Australia has a significant impact on our health.

Was recently reading some interesting new research about Vit D and cancer.

And you probably already know about the connection between low vitamin D and muscle weakness/pain. So it seems my Endocrinologist's request for me to take Vitamin D (recent tests revealed it's working well) may have a positive effect on my FM pain.

So perhaps CFS/FM sufferers might consider having their vitamin D levels checked. Simple. Is it a possibility? Increasing your levels (if low) might reduce some lethergy & muscle pain?

I have designed a regime of diet, vitamins/supplements which I will open a blog about (if I can find the time at, or after work). For those of you (like me) who are financially challenged & need the cheapest, easiest treatment possible. You might like to read some ideas on Food as Medicine.

After all you've got to eat.

I also need a SIMPLE set of guidelines - I can't remember what/how to do things beyond work. I have my vitamins/calcium/salmon oil etc set up on a tray so I remember to take them. How about all of you fellow sufferers? It seems like I can remember 20 things at work, but give me one thing to remember to do at home & my brain goes completely blank. This seems to be some magic trick, my brain has aquired to keep my job to survive financially. There is some sub-conscious process which lurks beneath the surface. But the trick falls apart when I try to remember to post a letter on the way home from work, or walk out to the kitchen to write an item on the weekly shopping list.

It's actually quite funny when it takes 3 hours & several walks from the lounge to the kitchen to remember to write "apples" on a shopping list.

(But I can do a complex account reconciliation at work - figure that one out. Like I said, it's a magic trick my brain has learnt since 2004).

You don't need the latest scientific research or clinical trials to try a change in diet. You don't need a dictionary to understand medical terminology. You just need an open mind & a willingness to try some simple dietary changes. Some of them stem from hours of poring through diets of the longest living inhabitants on earth, the paleo diet, dairy/grain free, acid/alkaline balance, food proven to aggravate pain or inflammation, plus a summary of top 20 foods high in anti-oxidants & immune enhancing properties recommended by all the top nutritionists in the world - living or dead. I even pored over a few theories of Hippocrates - a translation of his work is online. It took me 4 months to summarise every bit of information I read on the internet or from my health/psychology books on my bookshelf & then try to sort it into a simple set of guidelines to try on an A4 sheet of paper. (I photocopy it at work sometimes to take shopping). It has a few lists of foods in descending order laid out into a few columns (with some do's & don'ts to remember on the righ hand side of the page.

In exactly 2 months I dropped my high cholesterol dramatically, dropped my high blood sugar, raised my low potassium, increased my energy, clarity of thought, & regained alot of my efficiency at work (you notice I said "at work", I don't do much outside work).

Earlier this year, the cardiologist recommended either drugs or surgery to rectify my heart arrythmia which was threatening to make me pass out 7-8 times a day. I said give me a couple of months to think about it - I don't want any more drugs.

These episodes seem to have disappeared completely.

Co-incidence? Low potassium causes heart arrythmia (amongst other things). Can a banana, 2-3 avocados a week & a handful of organic raisins really delete the need for prescription drugs/minor heart surgery?

I don't know, but I'm still eating these foods on the off chance that this has made the difference.

I admit to NOT sticking to my dietary regime 100% - those free chocolate biscuits at work are a temptation.

Food as Medicine is my particular interest & has been for over 25 years - it's coming in handy now that I have chronic ill health (& injuries - I've had several bad falls in recent years). Thought I was clumsy, but it might be just lack of restful sleep made me a little unco-ordinated. Having said that, my fatigue is a hundred times better than 2004. I could barely walk to work then, & how I did my job is a truly miraculous feat of mind power.

Diet is my key & mainstary to being the best I can at the present moment. Haven't got the money for Specialists & lots of Drugs. Haven't got the memory to remember a set of exercises. Write it down, you may well say, but one has to remember to look at the piece of paper on the fridge.

I put a note on my front door reminding me to pick up my neighbours newpaper out of her box while she was away for a few days. It took me 3 trips - reading the note & walking to the letter box (forgetting what I was there for) before I remembered to take in her newspaper.

No I haven't got Alzeimers. (By the way, new reserch has shown a link between vitamin D & Alzeimers. I seem to remember reading somewhere about some clinical trials).

The mind/body connection is another interest. And I've been reading about Buddhist philosophy (Tibetan) & practising different breathing techniques for some time now.

(Back on the discussion subject now) I find closing my eyes & 5 minutes of a slow breathing technique helps the irritation of light & sound.

I spent 1 1/2 hours typing after work one night last week with the exact details for this breathing technique for Cort (to try) for his racing thought patterns (?). Can't remember what Cort said about his mind (now). When I went to post it to the site, I lost the lot. Nearly burst into tears out of frustration.

I sorry to diverge from the subject, but as I can't navigate this site very well, I may as well keep typing. I aso have a basic 12mths certificate in Herbal Medicine, used to have a large prolific herb garden in my parent's backyard (before they moved into a Retirement Village some 15 years ago) a full certificate in Aromatherapy & Massage......and thousands of hours in research & reading in alternative therapies as each health problem as it has arisen over recent years.

A little reflexology can go a long way to ease some aches & pains. I only did a day course during the year I studied herbal medicine, but if you get a reflexology map of your foot, try firmly pushing & rubbing the corresponding point under the sole of your foot & you may notice the effect on your tender point or painful spot on the other part of your body.

You don't need to be qualified or an expert - anyone can do it. If you've chosen the correct reflexology spot on your foot, you will feel a sort of carressing/tingling/tickling? sensation underneath the skin of your painful area.

You might like to split this post & throw some into the appropriate discussion -feel free to edit.

Victoria

PS I will have to find some money for a computer at home..........not enough time at work. It's 6.10pm & dark outside the office. I normally finish at 4.30pm!)

 

[Jody]

Victoria,

Don't worry about whether your posts go all over the place. It's all interesting.

Besides we've all got cfs. Guaranteed, the people reading will all assume any disconnect lies in their (in)ability to read and comprehend, not in your writing.

Let's see. Vitamin D.

I posted this somewhere else but I'm gonna do it again. This is an article about my love affair with Vitamin D --

http://www.ncubator.ca/Breaking_Rules_Laying_Sun.html

My diet, which may be different from yours (it seems to be different from most people's -- low carb, high protein and high fat) but it is my mainstay as well. I mistrust drugs and have a bad reaction to them. Plus I have a real thing about being some dr's guinea pig as he feeds me drugs that neither of us know will work, nor what they will do to me. So it's food and vitamins and herbs and supplements of various kinds. And (like you) I am much healthier than I was in 2004 when I thought I was having a stroke.

Interesting you mention Alzheimer's. Let me post another link to another article that refers to Alzheimer's as well --

http://www.ncubator.ca/Depression_Alzheimers.html

And, oh yes, you mention mind/body connection. Boy it's going to look like I'm peddling my articles here -- I guess I am. Anyway, I have this thing on Psychoneuroimmunology, a field that fascinates me.

http://www.ncubator.ca/Psychoneuroimmunology.html

That's it for me for now. I am toast. It is 4:30 a.m. and I should be asleep. But once in awhile it just doesn't happen. Havin' too much fun rockin' on the forums after dark.

Now Victoria, see? I can right long posts too.

 

[Angel]

brain fog and food

Hi Victoria:

You are spot on concerning the food that you eat. I hate to be the one to admit that, because I am a sugarholic.

When I cut out breads, pasta, white potatoes and sodas my triglycerides dropped 99 points in 2 months also. I also lost about 30 pounds. After 3 days my craving for sugar disappeared, and after 5 days I was able to stop taking a prescription medication for acid indigestion.

I am amazed at the number of people that brag how they have to take a pill every day for their stomach.

Yes, if you eat right, you can get rid of many prescriptions. Not all...

I identify with much of what you have written - - especially the part of writing/typing for an hour or two and then losing the whole thing.

Therefore, I'm going to share with you a coping mechanism that I have learned from those experiences.

Write on one topic, and then close it out.

Continue on with your topic by just posting to yourself.

Like this...

 

[Angel]

Vit D3/sunshine/negative on sunscreen

Thank you for the Vit D links JOdy.

Victoria:

Please go to Dr Mercolas web site and read some of his articles and his comments on Vitamin D3. I think taking Vit D only is old school, and in 2009 Vit D3 is recommended.

Dr Mercola is 100% in favor of Vit D3 and sunshine every day. I believe he recommends at least 20 minutes of sunshine a day. He has articles and believes that sunscreen causes more cancer than sun exposure.

That would be due to the studies showing that office workers get more skin cancer than those to spend the day in the sun without sunscreen.

Personally I don't wear sunscreen unless I'm going to be out more than 2 hours. In that case I don't put it on until 2 hours have gone by.

I do intend to purchase a sun product that is available on the Mercola web site that doesn't have the dangerous chemicals in it that the sunscreens do.

I also rarely wear sunglasses also believing that it is important to get the sun in the eyes for problems that Jody stated.

Sleep has been a major problem for me for the last 20 years. The earlier in the day I can get some sunlight in the eyes, the better.

My diet would be very similar to Jody's. I do best on meats and fats. I do not believe in statin drugs. I believe many mental problems can develop from depriving the brain from it's necessary fats.

I do take Omega 3's every day along with Protease, Serrapeptase, d-ribose, MSM, and a few others.

 

[Jody]

Victoria, Angel,

Nice to hear from a couple other foodies who have an aversion to drugs if there's another way to take care of business. I figure, at least part of my problems are due to GI issues, nutritional deficiencies and a heavy toxic load.

I believe my best way to fix that is by food, and supplements. I believe in building up the terrain, this way. I am uneasy with the idea of increasing the toxic load with drugs with known (and unknown) possible side effects -- all of which happen to me -- and without any certainty of what they will do for -- and to -- me.

It's already a mystery disease. I don't want to throw any more monkey wrenches in there, than are already there.

My personal feelings on the subject. I understand the view of wanting to be open to what the medical community might have to offer.

I am a curmudgeon, who has had some bad experiences with doctors, and they make me cranky.

 

[Jody]

Oh, and forgot to add ...

My experience with doctors didn't do me one whit of good. Wasted my time and my energy and ticked me off.

On the other hand, once I found someone to guide me through some alternative types of treatments, I began to improve (verrrry slowly) within a matter of months, and not quite two and a half yrs later it looks like maybe I can kick this thing.

So my personal experience definitely colours my perception of the medical community and its wares and the alternative, wholistic one.

I know other people have had a completely different experience on both fronts.

 

[Lisa]

You know, sometimes I think life is more interesting due to having heavy brain fog simply because of all the extra "AHA!" type of moments. I have read about hypersensitivity to sound and light being a CFS symptom, but other than when I am really doing terribly bad and experience it I had never connected it with other things until reading these posts.

Most of the time the sound of my partner absently mindedly rubbing the stubble on his chin just drives me batty! And being sound sensitive makes you just that much more aware of all the little odd mannerisms someone has and that they all can make an amazing amount of noise. I hate to admit it, but I have wondered a time or two how he wasn't even aware of the racket he was making while we were quietly reading and he is twiddling with a bit of plastic or something. Now I understand that its my ears that are suddenly batlike in their intensity. Luckily he is an awesome guy and understands the anxiety all these odd noises cause me and so tries to not make them as much as possible and when he does, he will adjust what he's doing so that I'm ok.

I too know the problem of flashing lights on movies or bright/obnoxious banners on web pages. For the banners/ads on web pages, if it is just something I want to see the one time and probably never read again I will bring up something else to cover that section of the screen, like a blank text doc or adjust the size of a google chat's box to cover that area.

I do have one question. Jody, you said something about body stone - I am not familiar with the term body stone. What does it mean?

Oh! and editing this part in real fast - for the obnoxious flashing pop ups or ad banners on web pages I also use "No Script" a firefox add on that blocks a majority of them without blocking the web pages content. Very helpful

Take care!
Lisa

 

[Jody]

I do have one question. Jody, you said something about body stone - I am not familiar with the term body stone. What does it mean?

Lisa

Hi Lisa,

Welcome to the forums.

That's a very good question.

The term "body stone" is ** ahem! ** a hold-over from my hippy days 30 odd years ago. I ingested a small assortment of hallucinogenic substances in my late teens, and this was a term my misguided friends and I would use to describe various effects we'd experience.

I left all that behind a long time ago. But when I first started experiencing the strange neurological symptoms of CFS, that was what they reminded me of, the only thing I'd ever experienced like these symptoms before.

So, having full-blown CFS was like, I would have said 30 - 35 yrs ago, was like "peaking on Acid" (LSD). Anybody who'd ever done this would know what I was saying and would also know that this was pretty disturbing to have something like this come out of the blue and hit me.

The only other things I could compare it to, though the comparison would not come nearly as close as the Acid thing, would be to say it was a bit like having had 2 or 3 too many drinks, and having trouble functioning. I also compared the vertigo at one time to being on a Tilt-a Whirl, or some such amusement park ride. Felt like I was being pushed back by centrifugal force all the time back then.

Maybe it's a good thing you didn't recognize the term, Lisa. That tells me you probably stayed away from those substances growing up and that's a good thing.

 

[Lisa]

Hi Jody!
Well... I wouldn't say I stayed away all the time from such things ... Though anything other than pot/alcohol I tended to only try a time or two as I was pretty focused on college. Perhaps it is more of a regional slang? I grew up in California and didn't move to Washington till I was 20. There have been many times I've been surprised by differences in regional slang even two states away.

Thank you for describing the term - that is a very good way of describing things at times. Always an odd thing to have to explain to people when you never know if they will be offended by the description or if they will have a first hand knowledge. I never know what to say when seeing a new physician and find myself stumbling over a description for feeling like you may not be grounded all the time in the same reality that he is in. I too will usually try to equate it to alcohol with them since that is a medically 'safe' thing to say you have experience with. Last thing any of us need is a doctor who shuts down to listening to you because you are honest about knowing what it feels like to be really stoned and that it is the best description of how the body feels/acts sometimes now. I wonder what the similarity is between CFS and those types of substances - maybe a similar shift in brain chemistry?

Body stoned, I like that. Much more descriptive than just saying to someone you feel really messed up. Thanks! And thank you very much for the welcome
Lisa

 

[Jody]

LOL

Well, you're welcome on all counts, Lisa.

I've also been known to use the term "head stone". It is not exactly the same thing as a brain fog. This is more the fractured stuff that I for one have experienced when "peaking" on CFS. I would include here the visual disturbances -- vertigo would sometimes cause the floors to seem to come up at me, for walls to seem closer than they were, on rare occasions for things to ... undulate. Also audio disturbances, where quiet things would seem amplified or I couldn't understand words being spoken. Feeling paralyzed and unable to speak. These types of things are "head stone".

So that's how we used to differentiate our experience when I was a teenager, describing the merits of this substance or that by whether it was a head stone or body stone.

Aren't you glad you came on here today for your tutorial in deadhead-speak?

 

[Jody]

Hi Jody!
I wonder what the similarity is between CFS and those types of substances - maybe a similar shift in brain chemistry?

Lisa

I did talk to a doctor once about this and he said that LSD monkeys with your serotonin levels (sorry this is the only thing he said on this that I recall, it's been about 10 yrs since this conversation). So, he figured it made sense that a patch of CFS might feel like a hit of LSD.

Time for Disclaimer : This is from a LONG time ago, a very LONG, LONG time ago. I am quite nervous now about bringing it up. I'm old and middle-class. Honest.

 

[Tony]

I think many people have food allergies, intolerances and don't know it, especially with this illness.

When I had a problem with sound (mostly signal to noise ratio, like trying to hold a conversation in competition with a tv, stereo, other noisy people etc) and very bright light, I took a very low dose anti-dep to help. It helped for 18 months but I still had the problem.

I decided to go gluten free and within a few days I was much better. It probably took several months to be mostly fine with shopping centres and party music. It's still not 100% all the time but vastly improved to the point where I only notice it occasionally. And the added extra was I no longer needed the a/d's.

For me, it's more likely the fructose/fructan problem was a main reason behind it, not necessarily the gluten, though it can play a part.

 

[Jody]

Tony,

I think you're right.

We starting to hear about what a difference this makes for different groups of people, from those with ADD, autism, kids having tantrums, just by avoiding certain food groups. Astonishing.

I know for a fact that if I stay low carb my health -- physical, mental -- improve and stay much steadier than if I eat grains, potatoes and corn, and sugar.

Someone (on another thread?) mentioned the relationship between grains and anxiety having been found in a study. I believe it. After being low carb for many months, we were quite tight financially for awhile and I had to revert back to bread and less meat. Didn't take long to realize I had a vague uneasiness beginning to resurface.

I recognized it. Had had it most of my life. Had in fact written about it in a Creative Writing class in school, about what we termed back then "freefloating anxieties" (wonder how much of that is food allergies, eh?).