rejoining the group after several years

[Guest guest]

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