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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> A Theory
        
(Message started by: bobr on Sep 30^th, 2002, 11:15am)

Title: A Theory
Post by bobr on Sep 30^th, 2002, 11:15am

Dear fellow sufferers

Its 10 to 11pm and as usual am thinking of excuses to avoid bed and sleep. ( as I am sure we all do).

I have been a paid up member of this very exclusive club for 21 years I think.

This batch started on 8 October, after a 24 month free period.(It has usually been 12 month gaps so I thought Oh well they have gone.)

One of the amazing things about the CH is that when they are around you cannot remember what its like when there not, and when you are free you cannot remember what its like to have them.

So, what I have learnt about our friends during this period.

MY experience tells me that if you treat the beast with drugs it lasts for longer periods and occurs with greater frequency during a 24 hour period.

For the first 11 or so years( apart from the root canal treatment arising from mis-diagnosis) I took no drugs.When it was finally diagnosed my new neurologist told me there was no known treatment, to keep off the grog and grin and bear it.
During this period my attacks lasted from 4 to 6 weeks, one per day 1 hour after sleep for 90 minutes.( with the odd minor variation.

In about 92 I met a bloke in a pub who wanted to know why I was in a pub and not drinking. He turned out to be a neurologist who had just returned from working in a Memphis Hospital. ( I think). He told me that while he was there a patient came in with an infarct who was given oxygen. He then developed a ch and the oxygen appeared to abort the CH attack.He told me subsequently some trials were conducted which indicated some success. He suggested I try it. I ignored the advise for about 2 weeks and then decided why not.

On the first try the oxygen caused the CH to "change gear" after about 9 minutes (compared with 80 minutes) and was gone in 12 to 15 minutes.

That early morning is etched in my mind up there with my first solo.

However the pattern immediately changed. In stead of one per nite, the beast came back about every 45 minutes. I still considered oxygen a major bonus not withstanding the effect of sleep deprivation.

As time progressed I became more and more convinced that a CH has a cycle which if interupted or supressed will persist at least until one gets out of bed. I was however too cowardly to test my theory by keeping off the oxygen. I simply couldn't stand the thought of the pain for 90 minutes.
My last pattern lasted 7 months. During this period I tried a battery of drugs.Prednisolone in particular provided some immediate relief, however as soon as I tapered of the dosage they returned with a new vengance, so back on them and so on.I only gave them up when all my hair started falling out and I threatened to kill a few concerned close friends.Then they were gone.

At the start of this batch I decided no drugs just oxygen. For the last 10 days they have been intermittent, none for the past 2 nites. Last week I let one go through with out oxygen ( just the wet tea towell and lots of crying) but I only had one that nite.

So my experience tells me that if you leave them alone and put up with them they will come and go much quicker .I will however continue with the oxygen due to my cowardly nature and intolerance for severe pain .

So. I think I should now go to bed to further test my theory

I would be interested to know if any one has had the same thought.

bobr
oz

Title: Re: A Theory
Post by Marc on Sep 30^th, 2002, 7:28pm

Hi,

Yup that theory has been expressed many times in the couple of years I've been hanging around here. Seem's that many people feel the same way.

NOT ME - Verapamil works for me - I still get hit occasionally, but nothing like it was before! I've been on Verapamil everyday for about 2 years now. If I try to taper down even a little, I get nailed BAD!!

Hope it works out for you with just O2!

Marc

Title: Re: A Theory
Post by Georgia on Oct 2^nd, 2002, 2:44am

Bob - and what of chronics? Do you theorize that if we who were chronic from the start don't use any meds, our ch will simply cease? Or perhaps we will become episodic...but if we become episodic from not using any meds, then how do we reduce the number and length of ch and the duration of the cycle by not using any meds? Or perhaps they would stop after 30 years with no meds as opposed to stopping after 40 with meds, if that were to be the case? Just curious as to what you propose.

I am glad you found something that works for you.

Title: Re: A Theory
Post by ave on Oct 2^nd, 2002, 2:33pm

Well, Bob, this may be the way it works for you, for me it is different.

When I had my unmedicated attacks, I used to wake up like clockwork, every two hours. I'd be up with the beast for 20-25 minutes, then sleep one and a half hour, and it came back.

This was from 9.00 pm till 5 a.m. appr. though it might throw in 7.00 a.m.

When I started getting medication and O2 the attacks grew less intense and I could sleep through some of them. When I chased an attack with O2 it would very often not come back so intense that I'd wake up again.

So my experience is completely different from yours.

Title: Re: A Theory
Post by bobr on Oct 4^th, 2002, 4:25am

MARC, GEORGIA, AVE

I SUPPOSE WHEN ONES THEORY IS BASED ON THE EMPIRICAL EVIDENCE OF ONE SAMPLE IT IS BOUND TO BE FLAWED.

I SUSPECT MY MOTIVATION TO AIR THE THEORY WAS TO SEE IF OTHERS HAD THE SAME EXPERIENCE BUT IN PART TO GIVE CREDENCE TO "MY" SELF FULFILLING PROPHESY.

MARC-DURING MY 7 MONTH CYCLE I TRIED VERAPAMIL WITH OUT ANY SUCCESS WHATSOEVER.IT SURE IS AN AMAZING BEAST.

GEORGIA- JUST HEARING OR READING THE WORD "CHRONIC" MAKES ME SHIVER.

MY THEORY I SUPPOSE IS A WAY FOR ME TO SAY THIS BATCH WONT LAST 7 MONTHS OR FOR EVER, "I'VE WORKED YOU OUT I'VE GOT YOU LICKED". MY INTENTION WAS NOT TO SUGGEST THIS WAS THE ANSWER FOR CHRONIC OR IN FACT EPISODIC SUFFERERS
AVE- I CAN ONLY REPEAT ITS AN AMAZING BEAST.

AT THIS POINT IN TIME MY THEORY IS WORKING -NO MORE SINCE LAST POST.(BUT MY SCALP IS STILL TIGHT AND SENSITIVE SO THEY HAVE NOT YET GONE)

THE ONLY THING I HAVEN'T TRIED IS LASER TREATMENT.
A GP I KNOW IS A FANATIC FOR THIS MACHINE FOR ALL SORTS OF AILMENTS. HE READILY ADMITS HE HAS NO REAL UNDERSTANDING OF HOW OR WHY IT WORKS.HE USES IT ON HIMSELF FOR CLUSTERS AND SAYS IT WORKS.

HAVE YOU HEARD ANYTHING ABOUT LASER?

THANK YOU FOR YOUR COMMENTS.

BOBR
OZ