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Medical Forum / Diseases and Disorders / Tinnitus / March 2007

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my 7yr old daughter

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mardavc@googlemail.com - 15 Mar 2007 09:43 GMT
Hi,
I'm new around here - so please to have found this ng.  My daughter,
Naomi, has tinnitus, endolymphatic hydrops, bilateral congenital
severe deafness and hypothyroidism (amongst her probs).  We have just
found out that she has a similiar to meniere's disease that is
progressively destroying her vestibular function.  The problem that
she complains about most is a constant sssssssh in her left ear when
she removes her hearing aids - so loud it wakes her up.  Is there
anything I can do.  We have been told to try her on a very low salt
diet for 6 months and then there is a possiblity of medication - how
do I make salt free custard and are there any low salt/salt free
cheeses out there?
Margot
fyfpoon@gmail.com - 15 Mar 2007 11:43 GMT
On 3月15日, 下午4时43分, mard...@googlemail.com wrote:
> Hi,
> I'm new around here - so please to have found this ng.  My daughter,
[quoted text clipped - 9 lines]
> cheeses out there?
> Margot

Has she got to visit a ENT doctor?  What did the doctor advise her to
do?
I suppose you think you can find better advice here in this group than
what her doctor has given her.

The first advice I can give you is that your daughter does not
necessarily need custard and cheeses to live on.  Many people in this
world don't have custards and cheeses and they are living happily.
You  can eat the food that is boiled.  Nothing wrong with that.

The second advice I can give you is what Murray in this ng suggests
and it is a good suggestion: drink a lot of distilled water since it
is very difficult to avoid salt.

The third advice I can give you is to talk to a pharmacist about
taking ginkgo biloba in order to improve the blood circulation in her
head.  An improved blood circulation in her head will do a lot of
wonders.

I don't know what kind of advice other participants in this group will
give you.  Your daughter would have 'habituated' if she could.
mardavc - 15 Mar 2007 12:03 GMT
Hi,
Naomi sees her ent consultant every 3 months and has done so all her
life.  Last week we saw a gait specialist for the assessment of her
vestibular function.  We are following her consultants advice to
reduce salt (she never  had a high salt diet) but I hoped that people
here may have experience that could help me to firstly understand her
experience and secondly help me to enable her to manage more
successfully.  We know that her condition is progressive.  Of course
Naomi can life without cheese and custard but custard is her most
favourite thing in the world and she is only 7.  Cheese is kinda
useful in cooking and in sarnies etc...
Ta.
Margot
fyfpoon@gmail.com - 15 Mar 2007 12:14 GMT
> Hi,
> Naomi sees her ent consultant every 3 months and has done so all her
[quoted text clipped - 9 lines]
> Ta.
> Margot

Then after she has exhausted whatever medical help the world of 'hard'
science has to offer, go to the world of 'soft' or 'less hard' science
such as TCM(traditional Chinese medicine).  A good way to do it is to
be referred to someone who knows what he or she is doing.

Remember, please, the world we live in is spherical in shape.
fyfpoon@gmail.com - 15 Mar 2007 12:19 GMT
> Hi,
> Naomi sees her ent consultant every 3 months and has done so all her
> life.

You should have stopped bringing her to ENT doctors or this particular
ENT doctor.  If something does not work 3 times, chances are it will
never work.  Either save your money with the same ENT doctors or move
to someone else.

==============================

 Last week we saw a gait specialist for the assessment of her
> vestibular function.  We are following her consultants advice to
> reduce salt (she never  had a high salt diet) but I hoped that people
[quoted text clipped - 6 lines]
> Ta.
> Margot
equesnel@unm.edu - 15 Mar 2007 21:21 GMT
> Hi,
> Naomi sees her ent consultant every 3 months and has done so all her
[quoted text clipped - 9 lines]
> Ta.
> Margot

Hi Margot, I have Meniere's disease, but not all the other problems
your daughter has.  Beware of advice given in this group.  Make sure
you consult her doctor before listening to anyone telling you she
should be taking ginko.  Fypoon is not the expert here.  I don't care
what he says.  He will probably reply rudely to me, but I really don't
care.  I'd advise you not to listen to him.

I've tried giving up certain things to ease the noise.  Sometimes it's
better to let yourself have something you really love even if it makes
the world a little louder.  To deny yourself everything is to really
mess with your life.  If your daughter's favorite thing is custard,
let her have it.  I don't think custard really has that much sodium,
does it?  I'm not certain, and I could be wrong.  You could cut sodium
in lots of other areas and let her have the one thing she loves.

There are also some really good physical therapy exercises for
stimulating the vestibular system.  Ask the ENT to refer your daughter
to a physical therapist.  I used to get bad vertigo from my Meniere's,
and the exercises helped me a lot with that.

I advise you to take any advice you get in this group straight to your
daughter's doctor and consult him.  He's the one who'll know what's
best for you and her.

Good luck!  Eva
mardavc - 16 Mar 2007 14:35 GMT
Hi Eva,
Thank you for your help and information re. naomi.  Naomi has a physio
and the ENT consultant has written to her asking her to focus on
vestibular things for now.  I think you're probably right and until
we've seen a dietician  she can continue to have her custard.  Does
tinnitus usually wake someone up?
Thank you.
Margot
Jim Chinnis - 16 Mar 2007 16:12 GMT
"mardavc" <mardavc@googlemail.com> wrote in part:

> Does
>tinnitus usually wake someone up?

Tinnitus tends to wake people up at points in the sleep cycle where they are
in light sleep or momentary wakefulness. A noise-generator of some sort that
runs all night can prevent this (a fountain, recorded nature sounds, a fan,
an air cleaner, etc.), It should be loud enough to be heard and may not need
to be much louder than that. I don't know if your daughter's hearing loss is
too severe for that to work.
Signature

Jim Chinnis / Warrenton, Virginia, USA
Want to discuss Meniere's? See http://groups.yahoo.com/group/MenieresDG

equesnel@unm.edu - 16 Mar 2007 16:19 GMT
> Hi Eva,
> Thank you for your help and information re. naomi.  Naomi has a physio
[quoted text clipped - 4 lines]
> Thank you.
> Margot

You're welcome, Margot.  I'm not the expert here either -- look at
Jim's message.  He knows more than I do about this, even tho I do have
Meniere's myself.  I don't really know if it wakes me up -- something
does.  I wake up about 5 times a night, but am not aware that it is
the tinnitus waking me up.  I agree with what Jim said here, too,
about foods.  Sometimes dietary restrictions help, and sometimes they
don't.  When you experiment and find what helps and what doesn't, you
can decide what foods to let Naomi have.  I certainly wouldn't just
yank her custard away from her.  I gave up caffeine for a year, and it
didn't make a difference.  So I went back to my cup of coffee every
day.  There are no hard and fast rules.  The main reason I wrote was
to warn you about believing what fypoon said.  I wouldn't listen to
him if I were you.  He's a bit nuts.  :)  Good luck!  I hope Naomi
does well.  There are lots of things to try that could make it better
for her.

Eva
fyfpoon@gmail.com - 17 Mar 2007 16:54 GMT
> Hi Eva,
> Thank you for your help and information re. naomi.  Naomi has a physio
> and the ENT consultant has written to her asking her to focus on
> vestibular things for now.  I think you're probably right and until
> we've seen a dietician  she can continue to have her custard.  Does
> tinnitus usually wake someone up?

Margot,

Tinnitus did wake me up at that time when I had it.  It was like
someone blowing a whistle at the centre of my brain and it happened
soon after I had fallen a bit asleep.  It was a nightmare experience.
>From what you have described of the treatment your daughter has had so
far, your current ENT doctor does not have an answer for that, if I
were correct.

I am going to tell you the treatment my ENT doctor gave me when I had
the same problem of sleeping and I hope you bring the idea to
'another' doctor and discuss it with him.  The reason why I suggest
you change doctor is because your daughter is suffering from the
inability to sleep and there does not seem to be anything your current
ENT consultant is able to do for her---aside from charging money from
her Mom.

The name of the medicine is called FLUNARIZINE HYDROCHLORIDE.  It
helped me sleep at that time when my tinnitus was bothering me
immensely.  This drug can be bought where I am OTC.  It is totally non-
addictive and I was told this med can help improve blood circulation
in the head.  You can talk to 'another' doctor about this.

Without this med, life could have been a living hell for me.  I
managed to dick out my old posts back in 2004 to show you below.  You
see, I had to battle against the habituation experts in this group in
order to save myself from a tormenting state. Some of these
'habituation' experts such as Stephen Nagler are doctors and as
doctors they are as professionally innocent as your daughter's current
ENT 'consultant'.

http://groups.google.com/group/alt.support.tinnitus/browse_frm/thread/a31eb49cf8
0fdaaf/165301e258750f1e?lnk=gst&q=chloride+fyfpoon&rnum=4#165301e258750f1e


I hope this is what you have been looking for in this group, aside
from a few words of comfort and sympathy from the school of
'habituation' experts.  And you know whom you should listen to next
time you come.

Good luck,

FP

> Thank you.
> Margot
Elly Byrne - 15 Mar 2007 20:19 GMT
Hi Margot,

I am so sorry to hear of all the problems your daughter has.
And yes, children can get tinnitus. Has she been under more physical
strain than usual? Has something in her life changed?
Try this page for some more information:
http://eebee.net/children.html

Just ignore fypoon's rantings. He is not the slightest bit helpful
today.

Elly
Discovery consists of looking at the same thing as everyone else and
thinking something different.  Roger von Oech
http://eebee.net/

>Hi,
>I'm new around here - so please to have found this ng.  My daughter,
[quoted text clipped - 9 lines]
>cheeses out there?
>Margot

Signature

Posted via a free Usenet account from http://www.teranews.com

equesnel@unm.edu - 16 Mar 2007 19:30 GMT
> Just ignore fypoon's rantings. He is not the slightest bit helpful
> today.
>
> Elly

Just today?  :-)  He is never helpful.  Any moment now, he's going to
come in here and tell me I should go back to my Affirmative Action
class -- whatever the heck that means.  It's his standard put-down
line.  Good luck!

Eva
fyfpoon@gmail.com - 17 Mar 2007 11:52 GMT
Eva,

Why are you having such a difficult time in getting rid of your 'bad
habit'?  What makes you think I don't believe in my own advice to
others as much as you believe in yours, or as Elly believes in hers
and Jim Chinnis in his?  It is rather presumptuous of you to have done
so.

That said, it is dangerous to take any advice over the internet
without consulting one's own physician.  And I would expect Mardavc to
take whatever advice she gets from this group and discuss it with a
medical authority before implementing it.  You are describing others
in such a way that you insult their intelligence.   For what you have
done, a few classes in an Affirmative Action program should be in
order.  Would you say so?

On 3月17日, 上午2时30分, eques...@unm.edu wrote:

> > Just ignore fypoon's rantings. He is not the slightest bit helpful
> > today.
[quoted text clipped - 7 lines]
>
> Eva
equesnel@unm.edu - 17 Mar 2007 16:36 GMT
On Mar 17, 4:52 am, "fyfp...@gmail.com" <fyfp...@gmail.com> wrote:
> Eva,
>
[quoted text clipped - 3 lines]
> and Jim Chinnis in his?  It is rather presumptuous of you to have done
> so.

I don't have a bad habit.  I'm sure you believe in your own advice.
It's just that I don't believe you know what you're talking about.  I
don't want a new person to come in here and actually listen to you.
That's why I warned her not to listen to you, but to consult her
daughter's doctor about every piece of advice she gets here.

> That said, it is dangerous to take any advice over the internet
> without consulting one's own physician.  And I would expect Mardavc to
[quoted text clipped - 3 lines]
> done, a few classes in an Affirmative Action program should be in
> order.  Would you say so?

See?  I knew you would get around to telling me to go to classes in
Affirmative Action.  I think it's hysterical when you say that since
it makes no sense at all.

I don't much care what you say.  I would never answer you at all,
except for the fact that you were touting yourself as an expert.  I
answered only to warn the original poster about you.

Eva

> On 3月17日, 上午2时30分, eques...@unm.edu wrote:
>
[quoted text clipped - 9 lines]
>
> > Eva
fyfpoon@gmail.com - 17 Mar 2007 17:22 GMT
On 3月17日, 下午11时36分, eques...@unm.edu wrote:
> On Mar 17, 4:52 am, "fyfp...@gmail.com" <fyfp...@gmail.com> wrote:
>
[quoted text clipped - 11 lines]
> That's why I warned her not to listen to you, but to consult her
> daughter's doctor about every piece of advice she gets here.

What makes you think I don't tell her to talk to her doctor first
before using any advice here?  Why don't you finish the whole
paragraph before replying?

> > That said, it is dangerous to take any advice over the internet
> > without consulting one's own physician.  And I would expect Mardavc to
[quoted text clipped - 6 lines]
> See?  I knew you would get around to telling me to go to classes in
> Affirmative Action.

Where else should I advise you to go?  Harvard?  or to assist Jim in
doing studies?  or to help out Murray in his clinic?  Your IQ
qualifies you for none of that.  Thus a couple of classes in the
Affirmative Action program where you will  sit with the IQ minority
should be the recipee. No?

 I think it's hysterical when you say that since
> it makes no sense at all.
>
[quoted text clipped - 19 lines]
>
> - 显示引用的文字 -
equesnel@unm.edu - 17 Mar 2007 19:23 GMT
On Mar 17, 10:22 am, "fyfp...@gmail.com" <fyfp...@gmail.com> wrote:

Thus a couple of classes in the
> Affirmative Action program where you will  sit with the IQ minority
> should be the recipee. No?

Since you're so keen on these Affirmative Action programs, please
explain to me what you think that means.  I think you have no idea
what affirmative action is.

Eva
fyfpoon@gmail.com - 18 Mar 2007 00:46 GMT
On 3月18日, 上午2时23分, eques...@unm.edu wrote:
> On Mar 17, 10:22 am, "fyfp...@gmail.com" <fyfp...@gmail.com> wrote:
>
[quoted text clipped - 8 lines]
>
> Eva

These Affirmative Action program of *my* definition is devoted to
those to whom both common senses and logics have failed.
equesnel@unm.edu - 18 Mar 2007 15:55 GMT
On Mar 17, 5:46 pm, "fyfp...@gmail.com" <fyfp...@gmail.com> wrote:

> > Since you're so keen on these Affirmative Action programs, please
> > explain to me what you think that means.  I think you have no idea
[quoted text clipped - 4 lines]
> These Affirmative Action program of *my* definition is devoted to
> those to whom both common senses and logics have failed.

Your definition is not good.  You don't know what affirmative action
is at all.  It has nothing to do with common sense or logic.  It has
to do with opportunity.  I try not to talk about things when I don't
understand them.  Looks like you should try the same.

Eva
fyfpoon@gmail.com - 19 Mar 2007 06:22 GMT
On 3月18日, 下午10时55分, eques...@unm.edu wrote:
> On Mar 17, 5:46 pm, "fyfp...@gmail.com" <fyfp...@gmail.com> wrote:
>
[quoted text clipped - 10 lines]
> is at all.  It has nothing to do with common sense or logic.  It has
> to do with opportunity.

I have been giving you chances to prove yourself and each time you
come back with a big disappointment.

I try not to talk about things when I don't
> understand them.  Looks like you should try the same.
>
> Eva
jga.socal - 19 Mar 2007 23:31 GMT
On Mar 18, 7:55 am, eques...@unm.edu wrote:
> On Mar 17, 5:46 pm, "fyfp...@gmail.com" <fyfp...@gmail.com> wrote:
>
[quoted text clipped - 13 lines]
>
> Eva

Eva. Poon does know what Affirmative Action is in the US. Poon is
saying that those who benefit from affirmative action programs are
stupid cuz they cant make it on their own.  Therefore, if Poon thinks
you are in a group that has used the program, you are stupid by
association.  Dont underestimate the height of poon's bigotry.
Jim Chinnis - 16 Mar 2007 05:11 GMT
mardavc@googlemail.com wrote in part:

>Hi,
>I'm new around here - so please to have found this ng.  My daughter,
[quoted text clipped - 9 lines]
>cheeses out there?
>Margot

Some people with Meniere's (less so with other endolymphatic hydrops
conditions) respond dramatically to sodium restriction, and for some it
makes no difference. Most people in a Meniere's discussion group (email) I
help administer have tried low sodium diets, and some have stuck with them
while others have resumed "normal" diets without any change.

Your daughter is fortunate to have a mother who is taking good care of her.
Signature

Jim Chinnis / Warrenton, Virginia, USA
Want to discuss Meniere's? See http://groups.yahoo.com/group/MenieresDG

White Whale - 28 Mar 2007 03:23 GMT
snip
> Your daughter is fortunate to have a mother who is taking good care of
> her.

I will further say that your daughter is fortunate enough to have a mother
that realizes that she actually has a problem.
Alfred
The New Guy - 28 Mar 2007 15:23 GMT
> > Your daughter is fortunate to have a mother who is taking good care of
> > her.
>
> I will further say that your daughter is fortunate enough to have a mother
> that realizes that she actually has a problem.
> Alfred

But is she going to mask the symptom or persistently search for a
solution?  That is key.  Its way easier to give up and mask it.
Jim Chinnis - 28 Mar 2007 15:32 GMT
The New Guy <replytogroup@here.thanks> wrote in part:

>> > Your daughter is fortunate to have a mother who is taking good care of
>> > her.
[quoted text clipped - 5 lines]
>But is she going to mask the symptom or persistently search for a
>solution?  That is key.  Its way easier to give up and mask it.

Masking wasn't likely possible in this case. Hearing loss requiring hearing
aids.
Signature

Jim Chinnis / Warrenton, Virginia, USA
Want to discuss Meniere's? See http://groups.yahoo.com/group/MenieresDG

The New Guy - 29 Mar 2007 14:03 GMT
> >> > Your daughter is fortunate to have a mother who is taking good care of
> >> > her.
[quoted text clipped - 8 lines]
> Masking wasn't likely possible in this case. Hearing loss requiring hearing
> aids.

Understood. I wonder what percentage of T sufferers also suffer from
significant hearing loss?
Elly Byrne - 16 Mar 2007 23:39 GMT
Hi again,

Here is a fact sheet about children and tinnitus
http://www.rnid.org.uk/information_resources/factsheets/tinnitus/factsheets_leaf
lets/tinnitus_and_children.htm


Kevin Hogan had a little daughter who developed tinnitus.
His reply is actually on http://eebee.net/children.html
But you can email him and ask him questions.
http://www.kevinhogan.com/FAQ.htm

These people have had experience in treating children who have
tinnitus. You can email them and ask questions.
http://meniere.eebee.net/staff.html

Elly
Discovery consists of looking at the same thing as everyone else and
thinking something different.  Roger von Oech
http://eebee.net/

>Hi,
>I'm new around here - so please to have found this ng.  My daughter,
[quoted text clipped - 9 lines]
>cheeses out there?
>Margot

Signature

Posted via a free Usenet account from http://www.teranews.com

don - 17 Mar 2007 06:24 GMT
> We have been told to try her on a very low salt
> diet for 6 months and then there is a possiblity of medication - how
> do I make salt free custard and are there any low salt/salt free
> cheeses out there?

Are you in the UK?  Both low salt and salt free cheeses are readily
available in the US and Canada.  Ask about them at your local shops.
Custard recipes don't usually call for salt.  Type "custard recipe" into
Google (without the quotes) for links to various recipes.  Of course,
almost every food has some sodium in it including the eggs and milk (or
cream) used to make custard, but the small amounts occurring naturally
in food are usually not considered a problem.

What you do have to watch for is the added salt in processed foods.  For
example, canned vegetables usually have a lot of salt added to them, but
frozen vegetables usually don't have any added salt.  Also, avoid fast
food chains like McDonalds, KFC, or Pizza Hut.  Their foods are loaded
with salt.

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