Man, I am suffering from this disease. Today it has been very
rough. Terrible in fact.
Mark Nichols
From:
dysosmia@yahoogroups.com [mailto:dysosmia@yahoogroups.com] On Behalf Of Luke
Sampson
Sent: Monday, May 04, 2009 11:06 AM
To: dysosmia@yahoogroups.com
Subject: RE: [dysosmia] Re: Also new
Hi Harry sorry i am on holiday at
present but will reply in more depth later J
Luke
From:
dysosmia@yahoogroups.com [mailto:dysosmia@yahoogroups.com] On Behalf Of harryony1
Sent: 25 April 2009 21:53
To: dysosmia@yahoogroups.com
Subject: [dysosmia] Re: Also new
Luke
You are being treated in England I guess and with one theropy? Sodium valproate
?? What is that? Would you expand on that for me please??
tks
Harry
--- In dysosmia@yahoogroups.com,
"Luke Sampson" <luke.sampson@...> wrote:
>
> Hi all , here is my two pennies worth :
>
>
>
>
> I am currently one sodium valproate tablets , and had been for now a month
,
> and it seem to be working great with only one side effect (my skin was
> really sore, and felt dry) , I had little other symptoms.
>
> During the last month it was better than I have been for ages, but since
> Easter Sunday , it's really been playing up again ..... I am due to see my
> doctor this week. I am still on 200 mg , not sure what else they will do
> except up the dosage ?? , the doctors in London say i can go up to 600 mg
>
> The three or so weeks I was fairly symptom free, this could be because of
> the tablets, or sometimes in the past , a week or so would pass where the
> symptons would be less frequent and then return with a vengence, so
unsure.
>
> Luke
>
>
>
> From: dysosmia@yahoogroups.com
[mailto:dysosmia@yahoogroups.com]
On Behalf
> Of harryony1
> Sent: 20 April 2009 14:33
> To: dysosmia@yahoogroups.com
> Subject: [dysosmia] Re: Also new
>
>
>
>
>
>
>
>
> I was disappointed in the lack of postings.. Please don't give up
people!!!
> If any of you have regained any part of your sense, please share it with
us
> so we may have some hope.
>
> thanks
> Harry
>
> --- In dysosmia@yahoogroups.com
<mailto:dysosmia%40yahoogroups.com> , Mick
> O'Hare <Mick.O'Hare@> wrote:
> >
> > Hi Harry
> >
> > Nice to have you back. Stick with the treatment!
> >
> > Mick
> >
> >
> > On 15/04/2009 01:16, "harryony1" <harryony1@> wrote:
> >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Well I didn't use the beta for the second post but it took and
now that
> > > is how I am getting it done.
> > >
> > > continuation: Nothing special , I am doing ok mentally and have
great
> > > faith in Dr Henkins theropy!! Several hundred words less :)
> > > .....................
> > > --- In dysosmia@yahoogroups.com
<mailto:dysosmia%40yahoogroups.com>
> <mailto:dysosmia%40yahoogroups.com> ,
> > > "harryony1" <harryony1@> wrote:
> > >> >
> > >> > lost the continuation too !! ,,,, nothing great I am
doing ok and
> have
> > > faith in the theorpy.
> > >> >
> > >> > Harry
> > >> >
> > >> > --- In dysosmia@yahoogroups.com
<mailto:dysosmia%40yahoogroups.com>
> <mailto:dysosmia%40yahoogroups.com> ,
> > >> "harryony1" harryony1@ wrote:
> > >>> > >
> > >>> > > Well, here it is and I did just get back from
a 23 state tour of
> the
> > > USA with 8750 miles of driving and 2075 nautical miles
(Caribbean
> > > Cruise) on the great Atlantic.
> > >>> > > We left the great Northeast USA on Feb 17 and
visited Dr. Harkin
> on
> > > the 19th, a scheduled appointment. I took my daily report sheets
which
> > > indicated how I was smell/tasting for the previous several
months from
> > > my first meeting, percentage wise to what I thought. Update:
apparentyly
> > > I was not at 0 when first diagnosed, as I called it a sensation.
These
> > > sensations are taste/smell but unable to identify what I was
eating. The
> > > sensations were still there, however, now I have these
distortions that
> > > made bad smelly things the object of a dinner craving???? WOW I
think I
> > > blew the ole doc away when I suggested that a flavor that was
"something
> > > really bad" would have been a favorable meal. :) Well it
certainly
> > > answered a few questions for me.
> > >>> > >
> > >>> > > to be continued!! ( I have posted prior to
this and lost lenghty
> > > post)
> > >>> > >
> > >>> > > --- In dysosmia@yahoogroups.com
> <mailto:dysosmia%40yahoogroups.com> <mailto:dysosmia%40yahoogroups.com>
,
> > >>> "O'Hare, Mick (RBI-UK)"
> > > <Mick.O'Hare@> wrote:
> > >>>> > > >
> > >>>> > > > Back last week Harry. Hopefully
you've missed the worst of the
> > > winter.
> > >>>> > > >
> > >>>> > > > M
> > >>>> > > >
> > >>>>> > > > > ----------
> > >>>>> > > > > From: dysosmia@yahoogroups.com
> <mailto:dysosmia%40yahoogroups.com> <mailto:dysosmia%40yahoogroups.com>
> > >>>>> on behalf of Harry O
> > >>>>> > > > > Reply To: dysosmia@yahoogroups.com
> <mailto:dysosmia%40yahoogroups.com>
> > >>>>> <mailto:dysosmia%40yahoogroups.com>
> > >>>>> > > > > Sent: Monday, February 16,
2009 2:43 PM
> > >>>>> > > > > To: dysosmia@yahoogroups.com
> <mailto:dysosmia%40yahoogroups.com> <mailto:dysosmia%40yahoogroups.com>
> > >>>>> > > > > Subject: RE: [dysosmia] Re:
Also new
> > >>>>> > > > >
> > >>>>> > > > > Sure thing Mick. Arn't you
there now for business, if I
> recall
> > > correctly.
> > >>>>> > > > >
> > >>>>> > > > > H
> > >>>>> > > > >
> > >>>>> > > > > --- On Mon, 2/16/09, O'Hare,
Mick (RBI-UK) <Mick.O'Hare@>
> wrote:
> > >>>>> > > > >
> > >>>>> > > > >
> > >>>>> > > > > From: O'Hare, Mick (RBI-UK)
<Mick.O'Hare@>
> > >>>>> > > > > Subject: RE: [dysosmia] Re:
Also new
> > >>>>> > > > > To: dysosmia@yahoogroups.com
> <mailto:dysosmia%40yahoogroups.com> <mailto:dysosmia%40yahoogroups.com>
> > >>>>> > > > > Date: Monday, February 16,
2009, 4:46 AM
> > >>>>> > > > >
> > >>>>> > > > >
> > >>>>> > > > > Harry, let me know how your
DC visit goes
> > >>>>> > > > >
> > >>>>> > > > > Mick
> > >>>>> > > > >
> > >>>>>> > > > > > ----------
> > >>>>>> > > > > > From: dysosmia@yahoogroup
s.com on behalf of harryony1
> > >>>>>> > > > > > Reply To:
dysosmia@yahoogroup s.com
> > >>>>>> > > > > > Sent: Sunday,
February 15, 2009 11:06 PM
> > >>>>>> > > > > > To:
dysosmia@yahoogroup s.com
> > >>>>>> > > > > > Subject: [dysosmia]
Re: Also new
> > >>>>>> > > > > >
> > >>>>>> > > > > > I just knew one of
the smells I get was something I used
> in my
> > >>>>>> > > > > > lifetime and you
made that happen. Thank You. Playdough,
> duh!!
> > >>>>>> > > > > > Right now I am
continuing the fried onion smell that I
> cooked
> > > 3 days
> > >>>>>> > > > > > ago, which is very
strong. They did agree it was strong
> while
> > > I was
> > >>>>>> > > > > > cooking them but
presnetly they can not smell onion
> anymore.
> > > Oh
> > >>>>>> > > > > > Well !
> > >>>>>> > > > > > The first ENT you
went to, was just as insensitive as
> mine,
> > > however
> > >>>>>> > > > > > he did 87 more
discoveries then mine. Mine just said "you
> > > should
> > >>>>>> > > > > > have it back in 12
months or less" and that was 2 years
> ago!!
> > > Of
> > >>>>>> > > > > > course that was
after the ct, mri, and poking a rod up my
> > > nasel
> > >>>>>> > > > > > passage.
> > >>>>>> > > > > > Use the saline
rinse and it should help with the odors.
> > >>>>>> > > > > > I believe that I am
at the stage you are in but I came
> from
> > > ZERO, so
> > >>>>>> > > > > > anything I can
smell/taste now is a holiday ;). Few and
> far
> > > inbetween
> > >>>>>> > > > > > but never-the-less
still a happening even if it is at 25
> > > percent.
> > >>>>>> > > > > > I am visiting
Washington D.C. for my second appointment
> with
> > > Dr.
> > >>>>>> > > > > > Henkin this
thursday and will update from there.
> > >>>>>> > > > > >
> > >>>>>> > > > > > Good Luck
> > >>>>>> > > > > > Harry
> > >>>>>> > > > > >
> > >>>>>> > > > > > --- In
dysosmia@yahoogroup s.com, "Jeannie" <jeanjeannie@
> ...>
> > > wrote:
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > > Hello to
all. I've been reading posts on this for
> quite some
> > > time -
> > >>>>>> > > > > >
> > >>>>>>> > > > > > > but only
became a member today. I wanted to thank
> those who
> > > have
> > >>>>>>> > > > > > > taken the
time to share their story...as it provides
> insight
> > > to me
> > >>>>>>> > > > > > > (and how
to apply to my personal case). While
> everyone's
> > > story and
> > >>>>>>> > > > > > >
perspective is unique, it's good to know that there
> are
> > > others who
> > >>>>>>> > > > > > > provide
support.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > > As for me,
my symptoms began in 5/2008. I'd been
> diagnosed
> > > in
> > >>>>>>> > > > > > > February
with RSV and told to wait it out. In early
> May I
> > >>>>>>> > > > > > >
experienced such terrible congestion - I could barely
> > > function. I
> > >>>>>>> > > > > > > had used Flonase
(combined with Allegra-D) in the past
> for
> > >>>>>> > > > > > allergies,
> > >>>>>>> > > > > > > so my
physician suggested to try Flonase again.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > >
Admittedly, it's difficult to determine the exact
> cause of
> > > the
> > >>>>>>> > > > > > >
onset...whether it was due to the URI, or the Flonase.
> There
> > > was
> > >>>>>> > > > > > one
> > >>>>>>> > > > > > > time where
I used it and experienced a radiating pain
> on the
> > > left
> > >>>>>>> > > > > > > side of my
head and face. Within days, I noticed that
> I
> > > could
> > >>>>>> > > > > > barely
> > >>>>>>> > > > > > > smell
anything.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > > As of now,
there are still odors/vapors that I cannot
> smell
> > > - while
> > >>>>>> > > > > > I
> > >>>>>>> > > > > > > can
distinguish that the odor of the air changes...I
> cannot
> > >>>>>>> > > > > > > distiguish
a specific scent associated with it. For
> quite
> > > some
> > >>>>>> > > > > > time,
> > >>>>>>> > > > > > > this was
the same with all odors, but some have
> improved
> > > over time.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > > In the
summer of 08, the absence of smell changed for
> many
> > > odors
> > >>>>>> > > > > > for
> > >>>>>>> > > > > > > me.
Detergents and shampoos smelled of asphalt (if the
> > > detergent
> > >>>>>> > > > > > or
> > >>>>>>> > > > > > > shampoo
was non-floral, berry scented). Coffee, urine,
> body
> > > odor,
> > >>>>>>> > > > > > > diesel
fuel, extreme skunk were also categorized as my
> "bad
> > > smell",
> > >>>>>>> > > > > > > which
smells of chemicals, rotting flesh, playdough
> and
> > > burnt >
> > >>>>>>> > > > > > > coffee. In
truth, this was (and continues to be) the
> most
> > >>>>>>> > > > > > >
disconcerting for me.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > > In
September, I visited my Neurologist who referred me
> to an
> > >>>>>>> > > > > > >
ENT...which was a miserable experience. He had me
> sniff
> > > upwards of
> > >>>>>>> > > > > > > 85 scratch
and sniff cards and put salt and sugar on
> my
> > > tongue. He
> > >>>>>>> > > > > > > said that
since I only missed 5 - that I should get
> over it.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > > Initially,
I felt deflated, as I consider myself to be
> the
> > > opposite
> > >>>>>>> > > > > > > of a
hypochondriac - and I felt rather insulted. More
> > > recently,
> > >>>>>> > > > > > I've
> > >>>>>>> > > > > > > seen a
different ENT who seems open to entertaining my
> > > symptoms and
> > >>>>>>> > > > > > > has
scheduled a sinus CT scan this week.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > >
Admittedly, there are times when it feels like I'm
> living
> > > life with
> > >>>>>>> > > > > > > the lights
half on - however I have experienced some
> relief.
> > > The
> > >>>>>>> > > > > > > asphalt
smell has diminished quite a bit. I can smell
> things
> > > now >
> > >>>>>>> > > > > > > that I
couldn't six months ago. Sometimes it depends
> on the
> > > day.
> > >>>>>>> > > > > > > There are
things that I still cannot smell at all
> (garbage),
> > > and
> > >>>>>>> > > > > > > there are
times when the bad smell becomes
> overwhelming.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > >
Nonetheless, I feel happy to have stumbled upon this
> group -
> > > as
> > >>>>>> > > > > > it's
> > >>>>>>> > > > > > > provided
ideas and clinics to visit - and most of all
> a
> > > glimmer of
> > >>>>>>> > > > > > > hope.
> > >>>>>>> > > > > > >
> > >>>>>>> > > > > > > Thanks,
> > >>>>>>> > > > > > > Jeannie
> > >>>>>>> > > > > > >
> > >>>>>> > > > > >
> > >>>>>> > > > > >
> > >>>>>> > > > > >
> > >>>>>> > > > > >
> > >>>>>> > > > > >
> > >>>>> > > > >
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> > >
> >
>
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