reply to ken

April 20, 2006

Hi Ken,

Could you let me know how quickly your polyps grew back before desense? And how quickly they grow back after desense.

Thanks Tami

April 21, 2006

> From: Tami Klumpyan <tami@...>

> Could you let me know how quickly your polyps grew back before desense? And

> how quickly they grow back after desense.

Before desensitization they didn't " grow back " they just kept growing.

I never had surgery before doing desensitization.

I did desensitization and perceived that it helped shrink the polyps, but I

did not continue with it because I was not comfortable with the thought of

1300mg asa per day, every day.

After I stopped desensitization, the polyps resumed their growth and I

became so stuffed that in desperation I finally scheduled my first surgery.

In the 4 months before the surgery I started regular irrigation, and by the

time of the surgery, the ENT almost cancelled it because the polyps had

shrunk so much. 9 months after surgery I don't think the polyps are an issue

for me -- I very often have SoS and I attribute all the success to the

irrigation, not the surgery.

I can't give you more accurate timings, because I wasn't getting ENT's

looking up my nose all that often, so my polyp quantification is very

approximate.

Ken

February 25, 2010

Hello everyone,

Ken, I am a very busy mother of 4 young children who is

sufferring horrendous rhinitis to the point i can hardly swallow. I am

absolutely exhausted after several night time wakings and an early start. My day

is completely full and i have been very busy researching with every spare

second. You are right, as a teacher I do have to be careful how I write. This is

not school. Late at night I logged on and decided to try to quickly jot down a

few ideas incase anyone would be interested. I did think about the format but

was too tired and too hurried to change it.

I am really surprised at you. In all the years I have read this

site I have never experienced such behaviour from you (Gosh, now I really do

sound like a school teacher!) Ken, I have found this very upsetting. I am

actually only stopping shaking now. What came over you? I will try to write in a

more acceptable format (and if desperately tired perhaps I had better not post).

ine

> >

> > Hello everyone. I was a keen member of this group around 2000. I now

> have 4 children and am teaching science part time so i have been kept

> much too busy!However, i feel my condition is worsening and wonder if

> the fluctuation in hormones with pregnancy and breast feeding has heped

> to keep my symtoms on an evenish keel. I have been prompted to look up

> the group again to retrieve 2 papers i posted and have since mislaid.

> (Ken i see you have transferred them with the updating of the web format

> thank you so much -the one on melatonin and the oneon aspirin and asthma

> ). I also want to let the group know where i am with things. I have a

> science background and tortured myself for about a year reading all

> papers i could find in medical journals on samters and related topics.

> The most promising info i could find was written by a russian doctor

> from pavlov medical university (she is described in her job profile as

> 'a doctor of no higher order'). she believes that she knows the cause of

> our problem. Melatonin is a hormone in our body that controls our body

> clock (it is responsible for lots of things but i will keep it simle).as

> the day progresses and it gets darker, more and more melatonin is

> produced until there is enough to allow us to sleep. as morning arrives

> the light slows melatonin production until levels are low enough to

> allow us to wake. people with samters triad produce far too little

> melatonin (genetic cause probably triggerred by viral infection).

> Because we need our body clock to work, our bodies have had to become

> extremely sensitive to melatonin and all related chemicals. have you

> ever wondered why your symtoms of rhinitis etc are so much worse in the

> morning? our bodies slow down at night and most chemical reactions slow

> down. In the morning the night time melatonin has to be broken

> down.Cortisol gets our body to rev back up to speed and breakdown of

> melatonin rapidly proceeds. melatonin breaks down to a chemical very

> similar to aspirin. this is what causes the morning symptoms. we cannot

> avoid melatonin or its breakdown therefore we cannot escape the

> symptoms. if we ingest melatonin to raise our low levels it will break

> down to the aspirin chemical with disastrous effects. there is a

> medicine available which has undergone testing for about 20 years which

> normalises the melatonin (and related chemicals) production in the

> pineal gland. the idea then is that our bodies stop this unnatural

> sensitivity they have built up. The medicine is called epithalamin. it

> has been used to treat many disorders all stating no side effects. to

> the contrary it is supposed to extend life and prevent cancers to a

> certain extent (probably because melatonin mops up free radicals that

> cause tissue damage associated with aging and cancers). the russian

> doctor has written many papers related to this and her preliminary

> trials testing this drug on patients with samters have been favourable.

> as far as i know she is undergoing further larger scale trials. i am

> taking what evidence i have to my gp on fri to ask to see a consultant

> endocrinologist with a view to asking for this drug which is quite

> expensive (£69 for 10 days supply). there are various other bits of

> evidence in papers and pertaining to me personall that i will be using.

> E.g Amitriptylline is a tricyclic anti depressent which i was given to

> try to stop migraines. it almost completely stopped my sampters symptoms

> (i caould even smell) for a period of a few months. with the help of my

> doctor i tried lots of other anti depressents to try to replicate the

> results to no avail. i stumbled across a paper a few days age about

> trying to reproduce normal sleep patterns in the elderly using

> 'melatonin and amitryptilline the inductor of its synthesis' and also

> anothjer paper stating that the pineal gland becomes desensitised to

> prolonged use of amitriptylline and no longer produces elevated

> melatonin levels. Even the fact that i have migraines could be linked. I

> was just starting to add another whole ream of the info that is running

> around in my head relating to this but it is probably info overload. let

> me know what you think. thanks for reading . pauline

> >

>

February 25, 2010

ine,

I don't think you need to justify your post. Please know that I welcome your

(and everyone's) contributions on this site. It takes all of us sharing our

ideas, experiences and research to find new avenues for exploration and new

things to try. I don't expect this to be a site with scripted scholarly posts

all of the time - we're all doing our best with what we have at the moment. I

hope this can remain a welcome resource to all of us. Rude or catty comments

will drive people away, and we all lose from that. I hope you'll keep posting

with us.

All the best,

Jennie

> > >

> > > Hello everyone. I was a keen member of this group around 2000. I now

> > have 4 children and am teaching science part time so i have been kept

> > much too busy!However, i feel my condition is worsening and wonder if

> > the fluctuation in hormones with pregnancy and breast feeding has heped

> > to keep my symtoms on an evenish keel. I have been prompted to look up

> > the group again to retrieve 2 papers i posted and have since mislaid.

> > (Ken i see you have transferred them with the updating of the web format

> > thank you so much -the one on melatonin and the oneon aspirin and asthma

> > ). I also want to let the group know where i am with things. I have a

> > science background and tortured myself for about a year reading all

> > papers i could find in medical journals on samters and related topics.

> > The most promising info i could find was written by a russian doctor

> > from pavlov medical university (she is described in her job profile as

> > 'a doctor of no higher order'). she believes that she knows the cause of

> > our problem. Melatonin is a hormone in our body that controls our body

> > clock (it is responsible for lots of things but i will keep it simle).as

> > the day progresses and it gets darker, more and more melatonin is

> > produced until there is enough to allow us to sleep. as morning arrives

> > the light slows melatonin production until levels are low enough to

> > allow us to wake. people with samters triad produce far too little

> > melatonin (genetic cause probably triggerred by viral infection).

> > Because we need our body clock to work, our bodies have had to become

> > extremely sensitive to melatonin and all related chemicals. have you

> > ever wondered why your symtoms of rhinitis etc are so much worse in the

> > morning? our bodies slow down at night and most chemical reactions slow

> > down. In the morning the night time melatonin has to be broken

> > down.Cortisol gets our body to rev back up to speed and breakdown of

> > melatonin rapidly proceeds. melatonin breaks down to a chemical very

> > similar to aspirin. this is what causes the morning symptoms. we cannot

> > avoid melatonin or its breakdown therefore we cannot escape the

> > symptoms. if we ingest melatonin to raise our low levels it will break

> > down to the aspirin chemical with disastrous effects. there is a

> > medicine available which has undergone testing for about 20 years which

> > normalises the melatonin (and related chemicals) production in the

> > pineal gland. the idea then is that our bodies stop this unnatural

> > sensitivity they have built up. The medicine is called epithalamin. it

> > has been used to treat many disorders all stating no side effects. to

> > the contrary it is supposed to extend life and prevent cancers to a

> > certain extent (probably because melatonin mops up free radicals that

> > cause tissue damage associated with aging and cancers). the russian

> > doctor has written many papers related to this and her preliminary

> > trials testing this drug on patients with samters have been favourable.

> > as far as i know she is undergoing further larger scale trials. i am

> > taking what evidence i have to my gp on fri to ask to see a consultant

> > endocrinologist with a view to asking for this drug which is quite

> > expensive (£69 for 10 days supply). there are various other bits of

> > evidence in papers and pertaining to me personall that i will be using.

> > E.g Amitriptylline is a tricyclic anti depressent which i was given to

> > try to stop migraines. it almost completely stopped my sampters symptoms

> > (i caould even smell) for a period of a few months. with the help of my

> > doctor i tried lots of other anti depressents to try to replicate the

> > results to no avail. i stumbled across a paper a few days age about

> > trying to reproduce normal sleep patterns in the elderly using

> > 'melatonin and amitryptilline the inductor of its synthesis' and also

> > anothjer paper stating that the pineal gland becomes desensitised to

> > prolonged use of amitriptylline and no longer produces elevated

> > melatonin levels. Even the fact that i have migraines could be linked. I

> > was just starting to add another whole ream of the info that is running

> > around in my head relating to this but it is probably info overload. let

> > me know what you think. thanks for reading . pauline

> > >

> >

>

February 25, 2010

ine, I second what Jennie has said. No apologizes are needed for this forum. Please continue to post - and disregard the ridiculous comments. As someone else has said we have all dealt with some depression with this disease and this resource that we can all collaborate on our topic of samters is a much needed group - both mentally and physically. Bianca From: gypsymouse@... <jratico@...>Subject: Re: reply to Kensamters Date: Thursday, February 25, 2010, 2:48 PM

ine,

I don't think you need to justify your post. Please know that I welcome your (and everyone's) contributions on this site. It takes all of us sharing our ideas, experiences and research to find new avenues for exploration and new things to try. I don't expect this to be a site with scripted scholarly posts all of the time - we're all doing our best with what we have at the moment. I hope this can remain a welcome resource to all of us. Rude or catty comments will drive people away, and we all lose from that. I hope you'll keep posting with us.