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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New Member from Australia
        
(Message started by: Barry_T_Coles on Jan 21^st, 2005, 1:09am)

Title: New Member from Australia
Post by Barry_T_Coles on Jan 21^st, 2005, 1:09am

Hi all I am a new member, Just logged in today January 21 2005, Great site and good to know I am not the only one although I would'nt wish it on anyone.
I have only just been diognised as being a CH although I have suffered for about three & a half years.
Luckily for me it has been three years since my last little trip the pain is still the same.
This time around three weeks so far and not looking at slowing down as yet, last time was six week so one guesses that I have a while to go yet.

Any way a bit about myself: Im 56 married with 2 grown children and live in Karratha Western Australia The town is located on the north west coast of Western Australia where the Woodside natural gas production plant is and is the centre for the iron ore industry in the Pilbara as this region is known as.

I notice that seasonal changes are mentioned in a questionair and it jogged my memory that the last time I had an attack was in the change of season from our winter to summer, and has happened again this time, also I find that the intense heat here ( mid 40 deg C ) and high humidity seems to bring on more attacks.

Ill say by for now and will definately keep posted all the best to everyone for the new year

Kind regards
Barry

Title: Re: New Member from Australia
Post by guesst on Jan 21^st, 2005, 8:46am

What a wonderfully polite introduction. Hope you are pf soon, and I hope your nice manners rub off on me and a few others. ;)

Title: Re: New Member from Australia
Post by Langa on Jan 21^st, 2005, 8:58am

Welcome to the Family Barry... 8)

Langa

Title: Re: New Member from Australia
Post by nani on Jan 21^st, 2005, 9:16am

Welcome Barry and I'm sorry you're here. There's lots of CH info here and a rather crazy and impolite group of people who will offer support. Pain free wishes to you, nani

Title: Re: New Member from Australia
Post by RichardN on Jan 21^st, 2005, 10:50am

Welcome Barry

Sorry your beast is back, but you certainly found the right place . . . info/caring/sharing/understanding.

You didn't mention what abortive(s)/preventative(s) your doc prescribed . . .. . ?

Keep in touch,

PFDANs,

Richard

Title: Re: New Member from Australia
Post by floridian on Jan 21^st, 2005, 2:46pm

Pilbara? Wasn't that the setting for the movie "Japanese Story"? Beautiful place, seems like it can be quite severe. I cringed for several minutes after that bloke dove into the pond. Welcome, hope you benefit from this site.

Heat definitely makes mine worse. I am also more susceptible to heat stroke or heat exhaustion than most people - the thermostat is in the hypothalamathingy, and like most of us here, mine doesn't work quite right.

Title: Re: New Member from Australia
Post by high_commander on Jan 21^st, 2005, 10:45pm

Welcome Barry!

Sad for you that you have reason to be here, but it's a great site for info and answers.

Danielle

Title: Re: New Member from Australia
Post by taraann on Jan 22^nd, 2005, 11:45am

Welcome Barry, and yeah I gotta agree that was a wonderfully pleasant introduction.

I am also curious on what medications you take. I think that high temp/humidity is a trigger for me alot too. How long did your cycle last, last time? Hopefully that will be an indication on how long this one will last too. Not all cycles are the same, but some people can practically set their watch/calendar by them.

Title: Re: New Member from Australia
Post by sandie99 on Jan 22^nd, 2005, 11:58am

Welcome aboard, Barry!

So sorry that you have CH, but I am glad that you found this site! :)

Best wishes & PF days,

Sandie99

Title: Re: New Member from Australia
Post by cray on Jan 24^th, 2005, 3:08am

G,day Barry,Russ from Vic. Diagonally opposite geographically almost. Welcome aboard,only found this site a few weeks back myself. Plenty of good info to be absorbed, and god support from a family on the other side of the planet. The people that put this this together are a wealth of info & inspiration. Your CHs sound on a par with mine (& plenty of others ) but mine were once the cycle started,and I had a drink ,alcohol triggered. If no drink, no CH until 5.30-6.30 pm. If i had a drink,even light ,10 mins later, Kip 6-7. Shit,longest post ever, didn,t even introduce myself in the manner i probably should of. Check out some of Jeepgun,s literature. Regards russ

Title: Re: New Member from Australia
Post by Bob_Johnson on Jan 24^th, 2005, 7:16am

The impact of heat on cluster has been the subject of at least one medical report which was posted here, i.e., yes, for some people, elevated body temp triggers attacks.

For years, I'd have an attack almost every time I did yard work in the summer. You might ask your doc to let you try a 2mg ergotamine sublingual tab ("Ergomar" in the US). You let it dissolve under your tongue about 1-hr before you enter into a high heat situation which experience says triggers an attack. It's a relatively inexpensive meds here but there is a total-dose-week limitation to attend to. But it was a life saver for me.

Title: Re: New Member from Australia
Post by Barry_T_Coles on Jan 29^th, 2005, 12:21am

Hi to all.
Sorry for not getting back erlier but I have been away working out bush.

Firstly thank you all for your kind thoughts and wishes with these and the love and support of my wife and children it has made going through this a lot esier.

This really is a great site, reading through the info and the posts it is just like looking into a mirror.

Some people asked some questions in thier posts so I will answer those now: To Richard & Taraann, My Doctor who directed me to this site prescribed an off the shelf pain killer " Aspalgin "containing Asprin 300mg & Codine Phosphate 8 mg, 6 to be taken imideately I felt an attach comming on, if that didn't work after 1 hour I could then take 2 prescription pain killers " Codalgin FORTE " Paracetemol 500mg & Codine phosphate 30mg.
Neither of these I believe did me much good as the attacks would go on the Kip scale from 0 - 4 within 5 minutes and then from 4 - 8 by the end of 10 minutes and reach 10 within half an hour, I would sustain this level for 3-4 hours when just as quickly it would dissapear and leave me totally wasted.

At the start I was only getting them when I would have a beer when I got home from work and would'nt get another untill the next night. ( 1 beer or less would start it off )
After the first 3 or 4 days and I had given up alcohol the frequency increased by up to 3 attacks a day vary'ing from 2 - 4 hours in duration but at the same intensity as before.

While I was away working the attacks still continued but due to the work I do I am not constricted by having to start & finnish at set times so I was able to ballance the two.
I did get caught out one day while about an hours drive away from my accomodation, IT was a long trip back to camp. But while driving back and tearing at my scull I felt a very tender spot in the muscle that comes from the top of the scull and travels down to the shoulder blade and parts midway to feed the face musles.
On massaging this tender spot by pushing in hard with one finger I could get some momentary relief.
I carry with me a massaging machine called a Mini Tens that I use for muscle relief from back injuries I have had for some 12 years.
When I got back to Camp and into the aircon room I applied the machine to the sore spot and got pain relief within the next hour.
Last weekend I dicided that I had had enough of the drugs and the never ending constipation and set out to use only the Tens, I have had some really good success
I can be totally pain free within an hour if I hit it as soon as I feel it comming on, I have now been drug & constipation free for a week and the attacks have gradually been less frequent and have not got above 7 at worst.
I should stress that I have had a lot of experience with this machine and have been trained by health profesionals in its use I would suggest that no'one should try this without talking to your Doctor, if used incorrectly you can cause muscle spasm's muscle seizure and possible nerve ending de-lamination.

Right now as I write I hav'nt had a attack for nearly 68 hours and am hoping that it may be comming to an end,
I'm lookig forward to when I can take my dog for our nightly run, she's also good therapy.

Before I forget to Floridian: Yes you are right it was the setting for the movie, I hav'nt seen the movie myself but will get it out on DVD and have a look.

To Cray, Russ in Vic I must ask whose your footy team i'm the Eagles naturally.

Thank you all again for your thoughts.
Kind Regards
Barry

Title: Re: New Member from Australia
Post by taraann on Jan 29^th, 2005, 1:59pm

I would do a search here on the TENS machine. Alot have asked about it here, so I'm sure you might find some personal experiences on it. I personally have none with it.

As for the muscle side of the CH, I get neck pain on the CH side. I had some physical therapy last winter for it and it relieved the neck pain and brought back most of the loss of strength I had experienced in my hand on the CH side. BUT then again as I'm rambling about this I'm thinking maybe the muscle pain FOR ME is due to whatever auto immune disorder I have or the Fibro I supposedly have (diagnosed as a teen, but thinking I was misdiagnosed, don't know don't care anymore)

Well keep me updated on your progress. I know when I try an alternative therapy I will give it some time before I know if it really is working, since CH is so unpredictable ya never know if it's the actual therapy that is working or just the CH is taking a break. I'm curious which is the case for you and the TENS.

I'm glad to hear you are getting a break!

Title: Re: New Member from Australia
Post by cray on Feb 3^rd, 2005, 5:27am

Wish i knew how to put up pictures up. Eagles r larger than Hawks but manouverability can be aproblem. Our wings were clipped a while ago and as you know feathers take a while 2 grow back

Title: Re: New Member from Australia
Post by cray on Feb 3^rd, 2005, 5:41am

what part r u working in? Acouple of blokes from down here were working at telfor recently,a b/maker &a scaffolder

Title: Re: New Member from Australia
Post by Barry_T_Coles on Feb 4^th, 2005, 12:20am

Cray
Good to hear from you. :)
Oh well at least we are both bird people.

Telfer is about 570 km to the ESE of Karratha and about 420 km south of Broome, pretty isolated place, havn't been there myself as I believe it is a mining site only.

Cant wait for the footy season to start I recon thats why I got CH too much stress having no footy.

Kind Regards
Barry
PS Ill have a crack at puttin in pictures and if I find out ill let you know.