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Mummy_D

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Reply with quote  #1 
I am almost eight months into h and pulsatile tinnitus and seven months since I started trt. I am becoming a bit despondent because I still experience chronic burning pain in my ears and across my neck and scalp pretty much throughout the day. I can tolerate tv radio music the Hoover the hair dryer etc albeit on lower levels than pre h but I am making absolutely no progress with impact type sounds (metal dishes crockery doors shutting etc) nor the sounds of my children's voices which cause immense pain. It seems I can tolerate background sound but anything which creates a sudden soundwave (is this called dynamic shift?) is a real issue for me. I have tried everything - relaxing around the sound, breathing through it, I don't wear ear plugs, I use either a fan at night or pink noise, I don't sit in silence and I do force myself to get out and about. The in ear generators I used to tolerate for six or seven hours a day now they really irritate and burn me even though they are still on the lowest setting. I had a ct scan recently for scds and whilst there is no dehiscence I have thinning of the temporal bone on each side. Could it be that my hyperacusis is the type which will not respond to treatment? I still don't know what caused it, definitely not exposure to excessive noise (although it did come on during my daughters fourth birthday) but probably due to wearing ear plugs at night combined with anxiety and chronic fatigue. Do I just need to persevere? Will this burning feeling ever go away? I have it even in silence. It doesn't respond to any painkillers. I also have bad light sensitivity and sensitivity to patterns and a bit of dizziness ever since a vertigo attack in February. Any positive encouragement would be gratefully received as I am very down at the moment. Trying to cope with three children under five with this illness is the hardest thing I have ever had to do [frown]
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Cheryl_K

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Reply with quote  #2 
Hi Mummy D 

I know many of the symptoms that you are describing. I don't want to give you medical advise that might go against what your professionals are telling you. But I have found books and studies to support what I am doing.

For me, it was important to finally (7 years after my accident, 3 years after a diagnosis), follow this very late advise, which would have made a big difference had it been provided years earlier. If I had protected myself from the stimuli which cause intense pain, I'd probably be in better shape by now, and perhaps not have gone through the degree of pain that I endured. Protecting from noise is difficult to do with children, I know. But you must protect your ears in the worst situations. I vary isolation, headphones, and ear plugs, different brands, because if I wear the same thing all the time, they cause pain, and lose their effectiveness.

Hyperacusis, generally speaking, is a progressive condition, unless you protect your ears and re-introduce slowly. Children's voices are a problem, I know. My children are grown, but I have a grandson. I was protected from his noises until he was old enough to understand, which was by age 30 months. He understands that "Grandma has a boo boo in her ear" (that's as scientific as we get with him.) We model soft spoken behavior for him, and I make it worth his while by being a real fun grandma, with quiet activities. Sometimes he becomes defiant, or exuberant, and forgets, but stops immediately when he sees my face, and needs a reassuring hug from grandma because he feels badly. There is no guilt. It is just the way it it is.

Being a grandma is different than being a mum, as the famous saying goes--we can rile them up and then give them back to their parents. I hope you have someone who can be a "buffer" for you. For example, during a birthday party, have one or two people on hand to take over when you need a break, when the sounds begin to become overwhelming. Wear ear protection during parties, and ask an adult or older child to be your "hearing ear" person, if you need it. If your children feel badly that you need to have some special considerations, tell them you are upset, too, and will have some special quieter one-on-one time later. Give them a choice of a quiet activity. Ressure them that mummy loves them, kiss them with your eyes, and hug.

Children can learn compassion. Speak softly with them. Just as they need to take naps and rest breaks, you do too. Maybe you can take rest breaks together, and hug if it is comfortable for you to do so. Pink noise in the background might help your children as well. Or not. Maybe try different types of background sounds. My children loved "Bach at Bathtime." So do I.

You know the rule of the oxygen mask on the airplane: Protect yourself first, so you will be able to effectively be there for your children. It's better to be a little off schedule and let someone else do the Hoovering while you are in another room, than to be a supermum in pain.

Good luck, best to you and your family.







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Mummy_D

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Reply with quote  #3 
Thank you Cheryl what a lovely reply. I do worry about wearing ear plugs in case it makes the sensitivity worse but I am not making any progress and it's so hard to look after the children when I am in so much pain with their voices.
Thank you for taking the time to reply
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Cheryl_K

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Reply with quote  #4 
Posted 6/6/14

Thank you, Mummy D

I'm happy I could help. There's nothing like knowing someone understands exactly how you feel.

The way I see it (and have experienced it), the choice is to do the least damage to the auditory processing system while it is healing. At the same time, gradually building up tolerance for the noises that cause pain or other bothersome effects is the goal. So you shut out, and slowly let in. 

It is a very difficult decision. If you don't wear the ear plugs all the time. but just when feeling vulnerable, or in a noisy situation you cannot control, it probably will not have the effect you fear. The first worry is healing of the system, if it will heal, or getting as close to healing as you can.

I wish someone would invent earphones or hearing aid type plugs that can be digitally calibrated for decibel, pitch, type of sound (dishes clanging), timbre, etc. on the fly, while we are wearing them. Then we could truly get used to re-introducing sounds on a more scientific basis. I kind of do that by using different types and brands, careful to pay attention to how I am experiencing sound. Sometimes it's very conscious, sometimes intuitive.

When going out for walks, or into a store, I have to preemptively wear headphones, as one surprise blast of a lawnmower or leaf blower, or fire engine,or, in a store, one child's sudden scream or static over the loudspeaker can put me out of commission..(Used to be a week or more of intense pain, but now it could be only a day or less, and less intense. I believe that protecting my ears, combined with introducing sounds has made a difference. I don't wear headphones while inside, or in a queet park, unless there is intolerable noise outside. Wearning headphones only during times I really needed them, and not all the time, did not stunt my ability to acquire tolerance to more sounds.;

Biggest mistake: Thinking you're "cured," and throwing all caution to the wind. Some people might have a physical condition that would require us to be careful for the rest of our lives.  Some might recover a bit better, even with a physical structural component.

Having young children makes the situation more difficult. I don't know the age of your youngest. If not yet a toddler, it could be very challenging.  

Pre-schoolers love imaginative games. Perhaps your older children could help out.

Try this: Help your children to find a decibel and tone that does not cause you any pain. Make it a game, and look absolutely delighted when they hit the right level of conversation. Assure them that they don't have to do this all the time, just with mummy, and then a non scary explanation of why.

Give a"token" for every two minutes or so that they are mindful about the sounds that they make. As they succeed, lengthen the intervals, 30 seconds or a minute at a time, until it becomes easy for them.

More than one person speaking at a time really causes me pain and vertigo. If that is something you relate to, perhaps the Native American "talking stick" would help. The person who holds the talking stick is the only one who can speak, and either when finished, or when you decide they are finished, it is someone else's turn to speak. If they want to speak they raise their hands, and you pass the stick from one to another.

Again, use behavior modification. A behavioral therapist could teach your family to "play this game." It could be rough at first, since impulsivity is high on the toddler job description list. Your job would be to only positively reinforce, and ignore the impulsive behavior as much as you can. If you can afford an au pair, or housing a student for free so that you can have some help, you would be able to take breaks from stimulation when necessary.

If this is not possible, you might ask friends and family to take shifts. Sometimes you can find volunteers who will be part of shifts. I did something like that when I was in high school. The mother's days were always covered. The child needed constant attention and therapy. Family, high school students, and empty nesters are out there for the finding.  Put up notices in the library, leisure center, house of worship, high school, wherever they might help to find volunteers. If you live near a college or university, ask the psychology, social work, education, and audiology departments to help recruit students. They might even help design the behavior mod program that you need. Students not only like to do things like this, but they could get credit for independent studies, or a mster's thesis.

When I was in high school, my small town weekly newspaper wrote an article about one family's situation, which required round the clock assistance with a neurologically impaired child. The article put out a call for volunteers. The reporter who wrote the article answered the phone calls, did some interviewing over the phone, and helped the parents to devise a volunteer schedule.

It is not your problem alone. In your case, it might take a village.At least for a year or two. But being alone with so many toddlers does not have to be an insurmountable obstacle to your healing. As long as you have kind, understanding people to help. Make sure you can tolerate each volunteer's voice, and that they will play the talking stick game, too.

"A friend is a stranger you haven't met yet."

Best,
Cheryl

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Mummy_D

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Reply with quote  #5 
Cheryl what an amazing reply / I am so touched you took the time to write it I am literally sat here in tears. What wonderful advice -
It is so helpful. Thank you so very much I am truly grateful bless you
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Cheryl_K

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Reply with quote  #6 

Mummy D--Thank you for the lovely response. It made my day! I hope it helps in the long run, and that you finally recover from this painful challenge. I understand these challenges too,--missing my large extended family very much, sorry that I cannot be the kind of mother and grandma I want to be. But our healing is most important. It will come, with hopes and prayers, following our protocols as best we can, in whatever time it takes, finally free to be our true selves for ourselves and our loved ones again. Meanwhile, they are looking after each other. It was a big adjustment. Bless you too. Let me know from time to time how things are going.
Cheryl

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shari

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Reply with quote  #7 


Cheryl,

What kind of headphones do you use? Are they the noise canceling kind from Bose?



"When going out for walks, or into a store, I have to preemptively wear headphones, as one surprise blast of a lawnmower or leaf blower, or fire engine,or, in a store, one child's sudden scream or static over the loudspeaker can put me out of commission..(Used to be a week or more of intense pain, but now it could be only a day or less, and less intense. I believe that protecting my ears, combined with introducing sounds has made a difference. I don't wear headphones while inside, or in a queet park, unless there is intolerable noise outside. Wearning headphones only during times I really needed them, and not all the time, did not stunt my ability to acquire tolerance to more sounds"
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Cheryl_K

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Reply with quote  #8 
Good question!  Not an easy or simple answer. At first I was using the low price headphones made for rifle ranges, but they were not so effective. I could hear everything. People recommened Bose, but I bought Panasonic for about $50.00. They were noise canceling, and I could adjust the pink noise level. On good days, I used all different brands of ear plugs. Some were more effective than others. I "checked in" with myself whenever I went out. If I felt well, I wore ear plugs. If feeling very vulnerable to noise, I wore the headphones. I hope I never have to go back to the complete noise canceling kind, so I'm being careful and patient with my progress.

My healing will take longer than "average" because I had multiple injuries, multiple surgeries.

I don't use the Panasonic at all now, or the ear plugs, as they have always caused pain in my injured ear, and it got worse, not better.  I don't wear any kind of ear protection at home, unless there are workmen in the house. I have some kind of music or TV on all the time. I use the inexpensive headphones outside the home. It is time to let more sound in, but I feel that I need prevention, just in case. I can hear with the inexpensive headphones, so it is not dangerous to navigate the world with them. The only problem is that some people think I am listening to music, so they come up to me and yell in my face! That's when I wish I were wearing the noise cancelling kind with the pink noise. But I can take it.

Hint: I experimented and bought Silly Putty to wear during MRI's. There is a warning label not to put it in your ears, but I knew the ear plugs would not be enough for and MRI, and the headphones have metal. The Silly Putty was the best. You knead it and stretch it the normal way. It stays outside the ear, does not go into the ear canal, and you can make a seal against your skin all around your ear's opening. It was comfortable and amazingly effective.  Just don't keep them in too long, or fall asleep with them.( I'm not formally advocating Silly Putty). I was just that desperate not to re-injure during the MRI. I could still hear the MRI sounds, but they were not bad, and I "listened" to imaginary pink sound in my head, figuring out the pitches of the MRI noises, and varying the imaginary tones in my head. I like perfect fifths, both up and down, depending on my mood, and/or the incoming pitch.
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shari

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Reply with quote  #9 

I also bought the shooters earmuffs. I only wear them for lawnmowers and leaf blowers when I am indoors (there is no way I could go outside during this). I thought I would be able to vacuum with them but the sound is too close and too loud.

I'll probably being wearing them for a few hours on July 4th!




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ontario78

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Reply with quote  #10 
Quote:
I thought I would be able to vacuum with them but the sound is too close and too loud. 


I (stupidly) vacuumed with my muffs on. My T is higher and my ears have been in setback since. Instantly after finishing, my ears went full [frown]..I knew I had blown it..

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shari

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Reply with quote  #11 

Sorry to hear that. I know what setbacks are like - I am going through my fifth one after listening to pink noise for 18 months.

I only put on the vacuum for a couple of seconds and shut it right off. Same with the garbage disposal.


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Cheryl_K

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Reply with quote  #12 

So sorry about the setbacks. I have the same reactions. My theory is that vibrations, as well as noise, are part of the problem. I notice sensitivity to vacuum cleaners too, but worse, when doing the vacuuming myself--just touching something that is vibrating makes the sound worse.  Also, when not wearing headphones, doing the dishes, when the icemaker starts, it's not just that particular noise.  I am aware of the vibrations in the fridge and the floor--and they bother me. And, when there is a change is road conditions and composition, and the road vibrates diffeently--even with headphones.  I have learned to tolerate so many sounds, but I have not learned what to do when the vibrations set off a response.

Does anyone else notice this?

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Mummy_D

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Reply with quote  #13 
Hi Cheryl
I have that sensitivity to vibrations too! And light and smell. It's like everything is in high alert mode. Wierd eh!
A quick update, I went for vestibular tests on Friday and they have identified that the central vestibular system isn't working as it should. I haven't had a copy of the report yet and I don't know what the next steps are or what this means but I am so thankful they have finally found something concrete rather than being told countless times it's all in my head! Ent doctors generally just are not very helpful!
The support from the people in this group and the kind folks who take time to come back and post their success stories even when they have for better keeps me going and gives me great strength. I do hope it won't be like this forever. Eight months in without any improvement or change it's hard not to get despondent - thanks so much for your kind replies cheryl and others
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Cheryl_K

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Reply with quote  #14 
Oh Mummy D,

I am so sorry to know that you are the one who has the difficulties with vibrations.

Who did the vestibular testing? Was it an OT, PT, or audiologist?  I had all of them. I went for OT and PT in 2008, but they terminated treatment because I couldn't tolerate the noise in the therapy rooms!  So it was good-bye, and come back when you're better, if your insurance company approves a second round, but you have to have a different symptom/diagnosis!

The vestibular PT was really good, but I got worse, not better, because of the din.

They watched me constantly going into "collapse" but would not turn the blasting television down because the PT aides and some (not all) of the patients wanted it on. There were some other patients in the room who thanked them for turning the TV off or at least down, But they didn't count either.

I'm writing this out for you so you can show it to doctors who say it is all in your head, and that you don't need considerate treatment. You are describing some kind of scrambling or other condition in your brain stem and/or ear.

I have the same difficulty with light and movement, but not smell, although when I am having an "episode," things taste awful, and I can't eat.

I read in some books that simple Tinnitus can take an average of 2 years to heal, so I didn't expect things to go quickly. I hope you can get lots of help, so you can avoid vacuum cleaners, children when they are screaming and banging their spoons on the table, and whatever else is slowing you down. I don't have the same challenges that you have, but progress is slow due to the nature of my symptoms.

So don't measure by days or months. Just keep at it.
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Mummy_D

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Reply with quote  #15 
Thanks Cheryl your messages of support mean so much.
I have to be in this for the long haul I know that. I want to throw in the towel all the time. I have been in some very dark places. But I have to keep going through all these horrendous symptoms - as if h itself wasn't bad enough.
I am resorting to ear plugs only when absolutely necessary and when the children are being very loud. Otherwise I have given up on the ear gens for a while to see if the burning eases off. It hasn't yet [frown]
The VOR exercises the physio has given me are helping with the balance but not the vision symptoms. But if I have to wear sunglasses all the time for the rest of my life I couldn't care less as long as this constant chronic ear pain goes and I can beat the h and pulsatile tinnitus. Such a challenge especially with the children. You are a rock of support Cheryl.
How recovered are you and how long ago and why did you get h if you don't mind me asking?
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Cheryl_K

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Reply with quote  #16 
Posted 6/19/14

Hi Mummy D

I just almost finished writing a response to you, but stopped to google the first name of a doctor (brain freeze) who was very influential in my training way back when, and lost everything I wrote.

It's late, and I had a very full day, with too much activity. I've been noticing my progress all day. I think of each new level in healing as "turning a corner." Someone called me late last night and was screaming at me over the phone, despite the fact that she knows even normal phone calls can be painful for me. I could not hang up on her. She is aged, lives alone many miles away, the mother of a friend of mine. I could not talk her down. But I could not do what she was demanding I do. I took an emotional as well as physical dive after that call. Thank goodness for sleep.

I woke up feeling well today. A tag sale lady was supposed to come to my house to help me sell all my stuff. She went to the wrong address, called the wrong telephone number. I got the message anyway (the person she called knows who I am), called her back, and found that she cannot tell the difference between 31 and 11. Also did not bring her notebook with her, with the two telephone numbers I gave her, in case my phone was not functioning. She was seeing prospective clients all day without her notebook, which she left home. I was really calm, but it turned into the second screaming fest (on her part) within 12 hours, over the phone, blaming me for everything (one of those "gifts" of my life script that keeps on giving, one of my emotional sticking points), and refusing to give me another appointment. (which I really didn't want--can you imagine this poor woman handling money?)  Oy. Those phones. My tolerance is much better. But it is still painful.

I have Clonazepine for moments like these. I took 0.25 mg, slept for over an hour, woke up refreshed. There are times you don't fight medication. The important thing is to stay below your pain threshhold. Mine was too high, going into intense reaction mode. It is good to stop it in thee bud. I am an experienced meditator, but need to go for the "easy" fix at times. Not an anathema in the mind-body network. Most of us teach when to reach for medication. Better not to re-injure, or if it has happened, bring it down real fast--don't stay in that state. The addiction element is usually when the doctor says "One tblet twice daily." Generally speaking, not a good idea. Take only what you need when you need it. Addiction is less likely to occur.

Then in the afternoon, interviewing a new contractor. Still have things to fix from Hurricanes Sandy and Irene, and corrections to the work that I already had done, which was worse than shoddy. All contractors have booming voices. This one was really nice, as he had worked for my former husband, and knew all about what had happened to me. But we walked all around the inside and outside of the house twice each, and I was feeling like a dishrag.

I wrote all this in answer to your question: Yes, I am getting better. When I started, I couldn't stand the airplanes that flew over my house, even when I was indoors, used to make me cringe and cry under the covers, even with headphones. One normal phone call, more than 15 minutes, used to make me dizzy and tremble, and "fall asleep." Yet this afternoon, after all this (and a thorough eye exam yesterday), I stood in my driveway, talking to the contractor, listening to the birds chirping, with a car driving by, and an airplane overhead.  Four sounds at one time today, when I could only process one sound at a time two years ago--I have a way to go, but happiness is whatever progress I have made. Y'all can quote me on that. Just please give me credit.

The contractor rejoiced with me. And he did not know the whole story. So yes, there's hope. Hang in there.

In the meantime, if you have the time, look up "Carl Simonton" on Youtube.com. He was an oncologist who noticed that too many people that he operated on, radiated, and chemo'd, pronounced "cured" came back years later with the same cancer, or a different one. He was actually one of the great founders and pioneers of the mind-body movement. I could sit and write for hours about all of his contributions to the field, and all the things I learned from him and applied in my practice for chronic pain and "terminal" disease. My colleagues and I reported similar healings when we met at conferences.  Many physicians explained our results away by saying things like "faulty X-ray equipment," wrong diagnosis, and the like. There was such opposition to healing the mind as well as the body.  We believe it doesn't matter what the cause was. Just treat the person, mind, body, and....we were not allowed back in the day to say "soul," Even "mind-body" was "quackery." The AMA lobbied against us. The FDA cracked down on some of the most productive of us, to try to intimidate all of us. Fellow psychologists called to lodge complaints against me. They were scary times. Hooray for Depak Chopra and Oprah. We had the research on our side, good, robust research. But they saved our hides.

So many things that Simonton did and taught can be applied to all difficult conditions, not just cancer. There are emotional, hereditary, as well as physical (injury, nutritional, pharmaceutical, etc) components, no matter what the precipitating factor. The therapy is effective no matter what the cause, in differing degrees, depending on the physical causes of the condition. I believe that I have all three components, can identify most of them, and the straw that broke the camel's back (or head) was an incident when I suffered multiple injuries in 2005, from one fall down accident. I bled from my  left ear for years. I'd rather not go into detail, as I am a "patient" on this website, and at this stage in my healing, my focus needs to be the present and the future. Needless to say, I was terribly undiagnosed and misdiagnosed for years. I put on headphones because I could not go out without them--before I knew the word "Hyperacusis." When I finally was diagnosed,over 4 years after my accident, the doctor told me to take the headphones off and re-expose myself to noise. Cold turkey. I actually did not know about the concept of re-injury until two years ago. It was not a doctor who told me. There is no-one who does TRT near me, so I've been winging it. Reading, doing what I taught others to do. I cannot wear ear plugs. No worry. I just fill the room with pink noise, nothing touching me. I became tactile defensive as a result of the injuries. That's over and done with. I don't need the pink noise so much any more. Still using all my "tools" though. I suspect it will be a lifetime practice.

I'm in the process/stage of releasing all resentment about the seriousness of my condition, the escalation due to the awful doctors. My medical files are filled with words like "bizarre" (a lot of that), "paranoid"(Just mention the word "voices," and they put you in the club), "drug-seeking," and "don't put Q-tips in your ears," (which I don't). It all made it into my permanent medical records anyway. My medical records read like a macabre book of fiction.

My most accurate diagnosis was: "Complications of medical care." The judge would not allow it into evidence. The fall was bad enough. Medical ignorance and neglect, and the behaviors of most doctors, allied health care, and lawyers turned it from really bad to really worse, and most responsible for my years of PTSD.

I digressed--back to Simonton. Important principle: Never leave it in the negative. If you have to, crawl your way back up to the positive.  Smile, try to find some humor in it, and if it's not funny, then in something else, even if just a memory of better times. Actually, in your imagination, recall good, funny, happy times, then see yourself in the future having those good times again, even if in different ways.

Studying the pioneers and "masters" can be helpful in retraining our thoughts, reactions, and patterns of behavior.  Simonton's videos and CD's can be applied to any physical challenge.

Patricia Norris, Ph.D. co-authored a book with a 12-year-old boy who was diagnosed with inoperable brain cancer. He was given something like 6 months to live. He lived, and there were changes in the X-rays and CAT scans, significant (but not complete) reversal of symptoms. The book was published and is available under two titles. One is "Why Me?"  It was renamed as "I Choose Life." It is available on Kindle, not too expensive.

I know that there have been many "flavors" and versions since, but these two people and their creations of this field, their stories are both inspirational and creative. Garrett's story is amazing and even fun to read.He taught Pat almost as much as she taught him.  If he can do it, we can do it too!

So now it's been my turn to apply these principles to myself.  And you do the work too, Girl!

And now, a question for you: Do you have handouts or a website for you VOR program? Is it PT or OT?

Another source of inspiration: Peter Yarrow's "With your Face to the Wind."  It was composed to save a life for someone very dear to Peter, and has saved many lives. You can google the lyrics. The audio available is by Peter, Paul, and Mary, with the audience singing along. It is a bit much for a hyperacusis-nik. I first heard it in person. In the 90's before it was recorded, Peter sang it into my tape recorder so that I could use it with clients who were using the "giving up" language. It helped me through my divorce, too, big time. It's easier to listen to when only Peter sings it. If anyone has an interest, I might be able to ask again, as my cassette tape has faded.
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Cheryl_K

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Reply with quote  #17 
Correction to the above message, last paragraph:

Another source of inspiration: Peter Yarrow's "With Your Face to the Wind."  It was composed to save a life for someone very dear to Peter, and has saved many lives. You can google the lyrics. The audio available online is by Peter, Paul, and Mary, with the audience singing along. It could be a bit much for a hyperacusis-nik .It was difficult for me to listen to it.  I first heard it solo in person. In the 90's before it was actually recorded, Peter sang it into my tape recorder so that I could use it with clients who were using the "giving up" language. It was effective with most of the clients who heard it--not all. It helped me through my divorce, too, big time. It's easier to listen to when only Peter sings it. Just one voice to process, slower tempo.  If anyone has an interest, I might be able to ask him again, as my cassette tape has faded.
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Mummy_D

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Reply with quote  #18 
Cheryl
What an inspired and brilliant message / thank you so much for your continued support. Sorry it has taken so long to reply I have had a busy week.
So I finally have a diagnosis of Cfs/me and also a failure of my peripheral vestibular system. I don't know what this means but I have a follow up on Harley street next week. I also saw a neurologist who wants me to trial topi max for migraines which I am getting every month. He wonders if this will help. I am scared about taking any medication as it seems I have been sensitive in the past but I am prepared to do anything to improve.
I have stopped wearing the in ear gens for now - they were burning and irritating me too much. I might try to get some open ear ones instead. I am coping ok and back in the real world without any protection just keep working through those sounds that cause pain and I don't go anywhere I know will be too much. If only I could deal with the children's voices / that causes the worst depression for me.
I have decided to take my daughter swimming and wear tinted goggle and swimmers plugs if I need them. It is breaking my heart that she starts school in September and can't yet swim without arm bands. I am torn between resting my ears (which I do completely two days a week when all three Kids are at nursery) and being a mummy again. The pain is great and no painkiller touches it. I also have burning brain and scalp and neck especially at night after noise accumulation during the day. I am trying not to resign myself to this being permanent but I have accepted it more now. Just taking each day at a time.
You have been amazing Cheryl thank you so very much
I will keep you posted with progress
Hope you are ok?
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Cheryl_K

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Reply with quote  #19 
Mummy D--

You are so kind. I am glad that I could say something to maybe bring a bit of lightness into such a heavy situation.

I have very much the same symptoms you have. You describe my nights so well:

"The pain is great and no painkiller touches it. I also have burning brain and scalp and neck everyday, especially at night after noise accumulation during the day"--it's me to a "T."

I also have a long history of CFS. I don't know what the "/me" is at the end of yours. I had the CFS more or less under control until my accident. It is believed to be hereditary, but usually manifests with great stress--either physical or emotional. CFS correlates with depression. I just began the "Paleo Diet" 4 days ago. Even with the auditory assaults on my system this week, my CFS is greatly improved. I finally had the courage to taste Almond Milk, blended with 3 frozen strawberries. Not bad. Very light and easy to digest.

My doctor wants to give me ULTRAM. I looked it up in Wikipedia. It sure covers a whole lot of diagnoses, including CFS, headache, and arthritis related issues.. But I'm afraid of the side effects--wouldn't let him prescribe it over the phone, asked for an appointment. He liked that. He's one of those really nice doctors I wish I had found years earlier. Called my pharmacist to inquire as well, and will print out a page of notes to discuss with my doctor before trying the new med. It took me a long time to learn not to be afraid of quesioning doctors' judgment, especially regarding medications. If they don't like it, too bad for them. I'll find another doctor who will take the time. Sometimes they really don't know what they are doing, just passing along samples from their drug rep. Here in the US, they actually get "perks" for prescribing meds that are too new to be generic. Not all doctors behave like this, but I've had a few. I don't know if you have the same thing going on in the UK.

Today I had a real setback. Something about a plumber yesterday, seems like a bad dream but it was real. He was here to give an estimate for a whole lot of things that went wrong all at one time. He did not know how to lower his voice. His "helper" was playing games on his IPhone, pinging away while the senior guy was booming his voice. The young guy had a look that reminded me of those guys in "Deliverance." At one time the 3 of us were crowded in my small bathroom which is tiled from floor to ceiling, sounds bouncing off the wall. I staggered and thought I felt a collapse coming on, but did not put on my headphones because I was inside. Wrong. Woke up today in intense pain, terribly sesitive to even my ceiing fan, which I love. This time I put on the headphones because the gardner came with the leaf blower, which I had asked him not to use.I told him my son and I needed the exercise, and we raked everything up quietly. I hope this guy does not bill for the leaf blower. My poor ears and neck, jaw doing its little jig, dancing along with my vibrating house. The heck with the "rules." If I need to protect, I will. The headache was so bad, nothing helped, and the neck pain, top of head pain/tingling, and vertigo remain. I hope I can sleep it off.  

Tonight no pain meds, just 0.5 gm Clonazepam.

I can't comment on what the neurologist recommended to you, although I know about it through my professional training and work. He may be right, but get a second opinion anyway. If you get a headache every month at around the same time, see your gynecologist and/or an endocrinologist, female if possible. You've had a gazillion babies or three in a short period of time. Just sayin.''

Good luck,
Cheryl'






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Mummy_D

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Posts: 85
Reply with quote  #20 
Aw Cheryl
So sorry about your setback, that sucks, does anything relieve the pain? I find either ice or heat can help. Not sure why complete opposites both work but sometimes they do. How about a hot bath with some aromatherapy oils?
Cfs/me is just what they call it here - sometimes the terms Cfs and ME are interchangeable. It scares me but I seeing a therapist and trying to pace myself and not over do it. I have had my vitamin b12 blood test this week and might have shots if it's low. The paleo diet sounds interesting - I googled it. I would try it but it's hard enough feeding myself at the end of the day once the kids are in bed I wouldn't have the tenacity to follow it. My husband works late pretty much most nights so a lot of the time it's just me doing the nursery pick up then getting the kids dinner bed bath and reading stories etc. My ears always burn by the end of the day and my fatigue really peaks.
I haven't heard of ultram - let me know how you get on it you do try it.
I don't have a gynae or endocrinologist, in the uk you only get to see a consultant if you are first referred by the gp. My migraines are definitely cycle related and the neuro is giving me estrogen to apply topically for five days a month to try and help as well as the topimax.
My h seemed a little better today although the t and pulsatile tin were booming away [frown] how are you feeling? The worst bit about this condition is he isolation and the boredom. I would love to be able to go out and socialise again / I was always such an outgoing fun loving person. I feel totally robbed of my life now [frown] but we have to keep plugging away, slowly stepping up the mountain in the hope that one sat the sensitivity will improve to a degree that we get some semblance of normality back.
Thanks Cheryl for your support - it means a lot . I do hope you feel better soon. Hugs
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Cheryl_K

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Posts: 101
Reply with quote  #21 

Hi Mummy D

Thank you for your encouraging message. I'm feeling better today.

I'm sorry you are so isolated with your children. I remember what it was like. People work such long hours, I remember that type of isolation.

I like warm showers with liquid herbal soap, and letting the warm water flow over my hair as I massage my head with relaxing herbal shampoos. I visualize the healing, and I do believe that the massage and herbs do help. I have a really really teeny tiny almost legal amount of a substance that I keep in a child's Thermos that I use for aromatherapy. It increases in aroma in the thermos, and so far has lasted for years. Don't tell anyone. I never even told my doctor. The substance is legal for medical purposes in my state, but only for five diagnoses. I don't think we T and H people will ever make it on the list.

I found out all kinds of things about the Ultram today and I am going to try it. I also had an extra acupuncture session. I need to rest and sleep so that it really takes effect. But I'm feeling well tonight, just some residual pain at the nape of my neck, moderate instead of severe vertigo.

Ultram is approved for CFS in the European version of the FDA. I got excited about that. My doctor never heard of that, as it is not approved here for that purpose. I got it from Wikipedia. There are no narcotics and no acetaminophine. The action is that it attaches to the receptors associated with narcotics, so it fools the brain into thinking you have taken narcotics. That's my understnding of it anyway. We dedided that the time release is not for me, as I can often manage my pain, and by taking them at differnt times and only when you need to, there is less chance of addiction. There was a real storm tonight, so i didn't drop the presciption off yet. Will wait a week or so before posting results.

Use my private email in my profile if you'd like a non-pharmaceutical hint for taming or even eliminating cyclical migraines.

Bless you too, for being there.
Cheryl




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Mummy_D

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Posts: 85
Reply with quote  #22 
Hi Cheryl
Just an update.
I saw my ent chap yesterday. He wants another MRI this time with contrast of my head and neck and also an Mrv. This is because of my pulsatile tinnitus. There is an outside chance they will also do a lumbar puncture [frown] I am so very scared.
The neurologist wants to treat me with topiramate to help with the daily headaches but I am so scared as I am super sensitive to medications. I feel caught between a rock and a hard place but so desperate to get better and try to get rid of some
Of these symptoms.
I hope you are doing ok after your setback?hugs
Natalie
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Cheryl_K

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Posts: 101
Reply with quote  #23 
Hi Natalie,
 
I hope that this is the right path for you. It would be wonderful if you get a reason for your suffering.
Lumbar punctures are very scary. I believe they used local anesthetics first. If you get an answer, if will be well worth the ordeal, which is worse in the anticipation than in the actual procedure itself. If the test is negative, then that is one more thing to rule out. Either way, considering your health care system, you are getting the best they can give you (in my opinion).
 
I have no experience or knowledge of how Topirimate would either help you or harm you. I know it has helped some, done nothing for others. In the short sample of people I knew who tried it, no-one was harmed.
 
Is biofeedback included in your health care system? Here in the U.S., it has been proved efficacious for both headaches and seizures. Have you had a full headache work-up which includes both research-based questionnaires for type of headache and dynamic neurophysiological assessment? I regularly use a wonderful questionnaire which can pinpoint exactly what type of headache we are dealing with, which can guide treatment. It can be ordered from a company in Boston.

Regular EEG's are too often ineffective for "outlier" cases. We are now going beyond QEEG to functional MRI (fMRI), LORETA, and magnetic imaging. It's here, but I can't get it for myself. In the future I hope it will be standard for all types of maladies. Imagine, being able to follow the sound waves as they travel through our brains! It's coming.  Right now it's out of pocket, totally exoerimental on a case-by case basis, with no statistics to back it up. I would gladly be a guinea pig, but nobody within driving distance is doing it Maybe you could find one a research study in the UK. Ask your neurologist if he or she knows of any. Some neurologists here work together with neurofeedback practitioners to assess before, during and after brain wave patterns (QEEG and/or Z-score) to assess the effect of medications, and to titrate, on perhaps a monthly basis, for the correct dosage.
 
Considering all that's going on here, I'm doing amazingly well. I am one of the ones who could be described as "guilty" of overprotecting. Check my reply to Martin last Friday for details, if you like. No H or T today either. If I go into a store or on a busy street  I'll use headphones preventively. I don't need to wear them all the time anymore in case the howling dog down my street is out in the yard. But I do turn around immediately. I think there is a case for being cautious, and I visualize myself once again "making friends" with the noises.
 
Hugs to you, too, and good luck,
Cheryl
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StringBean

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Posts: 40
Reply with quote  #24 
Mummy, turn the pink noise in your in-ear generators as low as you can comfortably manage all day long. It may be super-duper low, but the key is that you can manage the sound all day and it doesn't irritate you. Continue to do this and gradually raise the volume. You want to reach a point where the pink noise is at equal volume with "the world." In other words, it doesn't drown out the world but it's there.

I know exactly what you mean by "dynamic" sounds being the worst. The way to attack this problem is that these sounds are "softened" by the pink noise. You may find a fork hitting a plate is annoying as hell, but when you have the pink noise background you get a cushion. Over the months and months, this cushion grows. When the pink noise is at the perfect volume, that is it blends in perfectly with the outside world, you will be amazed at how your brain can handle dynamic sounds. It essentially has learned to treat them as normal.

It takes probably 9 months, in my experience, to reach the point where the dynamic sounds become less annoying. Stay patient and disciplined with the TRT. By 12 months you'll be in an excellent place. If you need your kids to be more quiet, tell them that you need it to get better and I'm sure they will help you out. They love you and want you to get better as well. [smile]
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