Luke, as a former patient of Dr Henkin's (though not a fan of his) I'm guessing he would recognize a case of phantosmia if he heard it described to him.

I had a classic case of phantosmia so I will describe my symptoms: I had periodic episodes of a bad odor that was hard to describe. It was consistent smell, it was putrid, it smelled sickly sweet, perfumey like rotting vegetables that were left in a refrigerator and you open the door and the smell hits you. The smell would come on suddenly, out of the blue. I could still smell normally, bacon would smell like bacon, coffee would smell like coffee for example, but there was this overriding stench that overwhelmed everything and affected how foods tasted as well (they tasted like the smell). That stench was the phantosmia. For many years, it was only on one side, so that if I closed off that nostril, my taste and smell went back to normal. SO for years I put a wet cotton ball in that side to block the odor and that is how I functioned.

Some people with phantosmia report a phantom smell like cigarette smoke, or some other kind of smoke. Some people might report a chemical smell like chlorine. There are all kinds of bad smells that people report, and even some good ones, some people report the phantom smell of roses.

When I saw Henkin, he treated me for over a year with high doses of Depakene (sodium valproate). Sodium valproate is an anti-convulsant used to treat people with epilepsy, because Henkin thought the problem was in my brain, though there was no evidence of this (my test results for seizure activity didn't show any). The side effects of the Depekane were very bad for me. I know others with phantosmia who were also treated with this or a similar drug and were not helped.

Now parosmia (or tropsomia) is when you smell coffee and it smells and tastes like poop, or some other awful thing for example. You don't smell the coffee at all, you just smell this other horrid odor. Bacon or meat might smell like something else. Because I have never experienced parosmia, it is hard for me to describe. Some people in the parosmia/phantosmia group who report parosmia claim they have been helped with the drugs Lyrica or Neurontin. I know Dr Leopold recommends these two drugs for parosmia as opposed to sodium valproate. That's why I suggested you ask your doctor about it. This assumes that you have tried an over the counter product like Simply Saline (which is just saline solution, no drugs, in a pump spray) in the "head down forward" position and it hasn't helped.

good luck! anne christie

--- In dysosmia@yahoogroups.com, "Luke Sampson" <luke.sampson@...> wrote:
>
> Hi Anne
>
>
>
> I am still confused whether i have parosmia or phantosmia , and am not big
> on technical/medical words.
>
>
>
> Emailing Dr Henkin he says i have phatosmia , however Professor V Lund here
> in London has said i have parosmia !
>
>
>
> Is there any self diagnosis i can do ?
>
>
>
> From: dysosmia@yahoogroups.com [mailto:dysosmia@yahoogroups.com] On Behalf
> Of Anne
> Sent: 17 May 2009 07:20
> To: dysosmia@yahoogroups.com
> Subject: [dysosmia] Re: Parosmia versus Phantosmia
>
>
>
>
>
>
>
>
> Mick,
>
> I have to disagree with you on this. Marjorie and I discussed your posts
> about parosmia vs phantosmia. They are very different disorders and they are
> treated differently. For example, some people with phantosmia seem to get
> the best results with the use of a product like Simply Saline in the "head
> down forward position" for temporary relieve. Also there is treatment with a
> the use of topical cocaine HC1 which is applied as a drop into the affected
> nostril. This has to be done in a doctor's office and there is a protocol
> for it, I would refer people to Dr Donald Leopold. Because cocaine is an
> excellent vasoconstrictor, the effect may be to deprive the neuron of blood
> supply. We've had a couple of success stories with the cocainization.
>
> For people with intractable phantosmia, there is also Leopold's surgery for
> the excision of the olfactory epithelium as a last resort. I have had both
> the cocainization & his surgery and both helped me, in fact I am now
> considered cured.
>
> For parosmia (I believe Leopold refers to it as troposmia) we have had some
> people on the parosmia site report success using the meds Lyrica or
> Neurontin (gabapentin) which can be prescribed by an ENT or your primary
> care physician. These drugs can also be used to treat Phantosmia, but I
> haven't seen any reports of success with that disorder and these meds.
>
> anne christie
>
> --- In dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com> , Mick
> O'Hare <Mick.O'Hare@> wrote:
> >
> > Hi Luke
> >
> > I reckon treatment will be very similar, yes.
> >
> > Mick
> >
> >
> > On 12/05/2009 22:34, "Luke Sampson" <luke.sampson@> wrote:
> >
> > >
> > >
> > >
> > >
> > >
> > > See reading that (Call me thick) , i am not entirely sure what i have
> got !
> > > One doctor is saying one , and the other doctor is saying the other !
> > >
> > > Argghhh it does my head it this smell stuff!!
> > >
> > > Are the treatments for both the same ?
> > >
> > >
> > > From: dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com>
> [mailto:dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com> ] On
> Behalf Of
> > > Wuensch, Karl L
> > > Sent: 12 May 2009 22:27
> > > To: dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com>
> > > Subject: [dysosmia] Parosmia versus Phantosmia
> > >
> > >
> > >
> > >
> > >
> > > · Parosmia -- distorted sense of smell
> > > · Phantosmia -- olfactory hallucinations
> > >
> > > With parosmia there is a chemical substance that normally produces a
> certain
> > > scent, but the scent you now experience is not the one that you did
> before ­
> > > for example, roses may smell like smoke and peanut butter may smell like
> dung.
> > >
> > > With phantosmia you smell things even when there is present no substance
> that
> > > normally produces a scent.
> > >
> > >
> > > Cheers,
> > >
> > > Karl W.
> > >
> > >
> > > From: dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com>
> [mailto:dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com> ] On
> Behalf Of
> > > Luke Sampson
> > > Sent: Tuesday, May 12, 2009 3:02 PM
> > > To: dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com>
> > > Subject: RE: [dysosmia] Re: Also new
> > >
> > >
> > >
> > >
> > >
> > >
> > > Hi Anne
> > >
> > > Thanks for the message, if I am honest I am confused ! , I know Mick
> will
> > > agree it doesnąt 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 donąt if Iąm
> 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 donąt , my biggest
> > > problem is that if I donąt 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%40yahoogroups.com>
> [mailto:dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com> ] On
> Behalf Of
> > > Anne
> > > Sent: 04 May 2009 23:52
> > > To: dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.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 <mailto:dysosmia%40yahoogroups.com>
> <mailto:dysosmia%40yahoogroups.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%40yahoogroups.com>
> <mailto:dysosmia%40yahoogroups.com>
> > >> [mailto:dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com>
> <mailto:dysosmia%40yahoogroups.com> ] On
> > >> Behalf
> > >> > Of Anne
> > >> > Sent: 21 April 2009 23:14
> > >> > To: dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com>
> <mailto:dysosmia%40yahoogroups.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>
> <mailto:dysosmia%40yahoogroups.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
> > >> >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >>
> >
> >
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