Hi Anne
Thanks for the message, if I am honest I am confused ! , I
know Mick will agree it doesn’t take much!!
When I emailed Dr Henkin , he replied back and said I think you
got Cyclical Phantosmia , but when I went to the Royal Ear Nose and Throat
Hospital in London I have been diagnosed with Cyclical Parosmia. I don’t
if I’m honest know what the difference is.
I have been put in touch with someone else who has been to see
Dr Henkin and was put on Sodium Valproate which got rid of most of her problems
and after some TCMS treatment she is now off the drugs and leads a normal
life. I am not sure what she was diagnosed with i.e. if it was pantomsia.
I know some people rate Dr Henkin, while other people don’t
, my biggest problem is that if I don’t get fixed here in the UK then I
need to source treatment elsewhere , and that is where it gets expensive for me
, which is no good when you have little money.
How come you suggest Dr Leopold in Omaha , what does he specialise
in, I have heard of him before but not so much as Dr Henkin.
Luke
From: dysosmia@yahoogroups.com
[mailto:dysosmia@yahoogroups.com] On Behalf Of Anne
Sent: 04 May 2009 23:52
To: dysosmia@yahoogroups.com
Subject: [dysosmia] Re: Also new
Hi Luke,
I know you are on vacation. I just don't think sodium valproate will help you.
I was put on that for a year for phantosmia and it did nothing. I think your
condition sounds more like phantosmia as it is unilateral and cyclical,
although there are all kinds of smell dysfunction. I would try Lyrica. Sodium
valproate is really difficult to tolerate. I know you are in Great Britain, but
if you can contact Dr Donald Leopold in Omaha, Nebraska, he might be able to
suggest something for you.
anne christie
--- In dysosmia@yahoogroups.com,
"Luke Sampson" <luke.sampson@...> wrote:
>
> Hi Anne ,
>
>
>
> I have been diagnosed with Cyclical Parosmia by the ENT Hospital in
London!
>
>
>
>
> Here are my symptoms , i have cheated slightly and copied this from an
> email i sent someone as my laptop battery is just about to die on me!
>
>
>
> My condition has gradually got worse over the years , I wake up as normal
> and even with 15 minutes or my smell and taste will just change, some days
I
> can go with experiencing the problem , but these are few and far between.
I
> can only describe what I taste and smell a bit cheesy , other times it can
> taste different. When I do exercise or get hot it will also trigger me to
> lose my taste/smell.
>
>
>
> I used to be able to gain my taste/smell back by pinching my nose and
> breathing in words, however while this to use work it doesn't seem to
> anymore and also can hurt , I am scared to sniff or blow my nose, I always
> feel like I got a cold and generally I find myself dread going out to
meals
> or drinking as this effect my enjoyment and when I do lose my smell/taste
it
> does make me depressed.
>
>
>
> Other symptoms i recognise is that it seems to happen in only one nostril.
> Either way when i have the problem i don't want to drink / eat anything ,
> if i really have to have anything then it needs to be as plain as plain
can
> be.
>
>
>
> Luke
>
>
>
> From: dysosmia@yahoogroups.com
[mailto:dysosmia@yahoogroups.com]
On Behalf
> Of Anne
> Sent: 21 April 2009 23:14
> To: dysosmia@yahoogroups.com
> Subject: [dysosmia] Re: Also new
>
>
>
>
>
>
>
>
> Luke - what are your symptoms? Are you just experiencing anosmia or do you
> suffer from parosmia or phantosmia?
>
> anne christie
>
> --- In dysosmia@yahoogroups.com
<mailto:dysosmia%40yahoogroups.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
>