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10 years of cluster and only joining now! have ??? (Read 1405 times)

murph

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10 years of cluster and only joining now! have ???
Mar 4^th, 2009 at 5:12pm

female age 40 , ten long years with this beast. Would love to make contact with others in southern Ireland seems to be far and few in between! Am currently in a cycle since november and am truly fed up this is the longest yet. had a break of about three weeks went on a trip abroad for a weekend and when I came back so did the beast. I kind of had a bad head on the flight and this was the second time this happened, has this happened to anyone else? Also have history with thyroid problems, can anyone else tag the two together or am I cluthing at straws , i know the thyroid conrtrols lots in the body... sorry about spelling am on the steroids at mo.....ANOTHER QUESTION ANY HOPE OF THIS THING DISSAPPEARING WHEN i HIT THE MENOPAUSE IF SO BRING IT ON.... :THANKS MURPH

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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Re: 10 years of cluster and only joining now! have ???
Reply #1 - Mar 4^th, 2009 at 5:50pm

murph wrote on Mar 4^th, 2009 at 5:12pm:

female age 40 , ten long years with this beast.

Would love to make contact with others in southern Ireland seems to be far and few in between!

Am currently in a cycle since november and am truly fed up this is the longest yet. had a break of about three weeks went on a trip abroad for a weekend and when I came back so did the beast. I kind of had a bad head on the flight and this was the second time this happened, has this happened to anyone else?

Also have history with thyroid problems, can anyone else tag the two together or am I cluthing at straws , i know the thyroid conrtrols lots in the body...

sorry about spelling am on the steroids at mo.....

ANOTHER QUESTION ANY HOPE OF THIS THING DISSAPPEARING WHEN i HIT THE MENOPAUSE IF SO BRING IT ON.... :

THANKS
MURPH

Spelling is not a big problem, but no paragraph usage IS a problem! Much too hard to read, and understand, without them.

I do not have a thyroid problem, nor do most of us.

As far as it disappearing at or after menopause, that is totally unknown. Some do, and others don't. It is a crap shoot.

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Guiseppi

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Re: 10 years of cluster and only joining now! have ???
Reply #2 - Mar 4^th, 2009 at 5:53pm

Welcome to the board Murph! I live in the states but my daughter will be in Ireland in about 4 days for a 4 month stay!

Some grow out of them, some in their 80's still have them, it's random as heck. What are you doing to treat them? Do you have oxygen yet? Let us know what you've been using, what has and hasn't worked.

Glad you found us, hope we can help you out!

Joe

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midwestbeth

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Re: 10 years of cluster and only joining now! have ???
Reply #3 - Mar 4^th, 2009 at 6:00pm

Hi Murph and welcome.

You live in a beautiful contry, I can't wait to visit someday.

My thyroid started acting up about the same time ch showed up. I think it is more than a coincidence, but I have no medical proof to back it up. I think that is just what triggered the ch in me.

Tell us a little more about yourself. What meds have you tried? 02 has been a life saver for me and many others here. Click on the link to the left for more 02 info.

pf wishes to you,
Beth

Dum vita est spes est

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: 10 years of cluster and only joining now! have ??? Reply #4 - Mar 4^th, 2009 at 6:04pm To find some buddies closer to home: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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murph

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Re: 10 years of cluster and only joining now! have ???
Reply #5 - Mar 5^th, 2009 at 7:19am

thanks guys,
i THINK i HAVE TRIED LOAD OF MEDS ,IN VERY BAD CYCLE AT MOMENT SINCE LAST NOVEMBER LONGEST YET! IT IS PROVING TO BE SO STUBBORN THIS TIME AROURD. i HAD BEEEN ON TOPAMAX AND HAD WONDERFUL RESULTS I THOUGHT I HAD FOUND THE WONDER DRUG BUT ALAS IT STOPPED WORKING. I AM CURRENTLY ON MY SECOND DOSE OF PREDS TAPER NO PAIN LAST TIME BUT BEAST RETURNED. TWO WEEKS OF MORE HELL AND DOC SAYS TRY AGAIN , LAST ATTEMPT.

HE IS VERY WARY OF WHAT TO PUT BE ON NEXT WANTS TO GET ME TO SEE A NEURO BUT FIND THEM PRETTY DIFFICULT HERE IN IRELAND , THE WAIT IS MONTHS LONG AND SIX WEEKS INBETWEEN VISITS , WHAT USE IS THAT?

YES I USE OXYGEN BUT IT ONLY HELPS WITH MILD ATTACKS AND SOMETIMES ONLY PUTS OFF THE INEVITABLE BIG ATTACK TILL A BIT LATER.

IMIGRAN IS MY GOD IT IS REALLY THE ONLY THING THAT WORKS
SOMETIMES HALF AN INJECTION BUT MOSTLY FULL. IF I USE HALF I END UP GETTING ANOTER HEADACHE LATER IF USE ALL NO MORE THAT DAY.. I USUALLY GET THEM EVERY SECOND DAY WITH SHADOWS INBETWEEN.. ITHOUGHT I HAD REACHED MY PAIN THRESHOLD OVER THE LAST TEN YEARS AND THAT THESE COULD NEVER GET ANY WORSE BUT I WAS SADLY MISTAKEN. WHAT I THOUGHT WAS KIP 10 WAS NO LONGER AND I DID NOT THINK I WOULD SURVIVE THE LATEST PAIN BUT GOSH WAS IT BAD!!!!

AM HEADING OFF TO TRY GET VERAPMIL AND TRY IT AGAIN TO SEE IT IT WORKS THIS TIME... THANKS MURPH

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Guiseppi

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Re: 10 years of cluster and only joining now! have ???
Reply #6 - Mar 5^th, 2009 at 10:49am

Definitely one of the more frustrating aspects of the beast. What works for one cycle doesn't for the next. I have the same reaction to prednisone as you, while I am on the prednisone, I'm pain free. As soon as I go off of it they come back ten fold. Some can actually halt a cycle with the use of prednisone, sadly it sounds like you are similar to me and it's only going to provide temporary relief.

Do check out the ouchuk site, maybe they can steer you to a quicker route to get to a neuro.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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murph

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Re: 10 years of cluster and only joining now! have ???
Reply #7 - Mar 5^th, 2009 at 1:47pm

thanks will do guisseppi.

and yes my thyroid problem started around same time as cluster it just makes you wonder! I have an under active thyroid and now the have found nodules...going to see an endo cronologist so might just mention cluster to him and see what his reaction is caus alot of the meds can effect the thyroid.. worth a try.murph

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howcoolrutoday

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Re: 10 years of cluster and only joining now! have ???
Reply #8 - Mar 5^th, 2009 at 6:35pm

Agreed - we are all different .... except ... if you subscribe to the current thinking on the origins of CH - thickened walls of the hypothalamus - which addresses our circadian rhytms (sleep cycles) - it would appear to be a life-long ailment of varying degree. I have read that Harvard Medical School was in process of performing research employing Psilosybin (Mushrooms) and LSD to reset our "internal clocks". This has been noted to have success towards both breaking cycles AND preventing them. I have not personally tried but was about to during my last cycle 3 months ago (the cycle ended before I had the chance). Maybe other CH members have can speak to this in a more informed manner. I can only share my 25 year history graphically - fortunanately for you (I hope) the last 10 years of research has dwarfed the prior 100 years.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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