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Jerry has uust joined,Hi! (Read 2700 times)
Jerry-English
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Jerry has uust joined,Hi!
Jul 12th, 2008 at 5:43pm
 
Hi everyone, I've just sat here and cryed my eyes out. I never knew there were so many of us trying to get by with this.

I have been reading about triggers of CH and daiognosis. (I dont spell too well ok) It toke me 10years to get a diaognosis and my Doc tryed all sorts of crap on me trying to save a few pounds (dollars)  .

He tryed me on O2 but at a slow flow rate, I was trying to suck the O2 from the pipe, I still dont have a suitable O2 kit (bloody good for lighting the BBQ though) I know the risks!

I know inject (imigran) and if I get it early on it helps in about 13 ninutes.

I have had to work on my triggers for all those 10 years, I hope the list will help you.
  Angry Beer and wine, hot baths, stress, perfume (on my wife no me)
the smell of gas (petrol in England) Missing meals, paint thinners and any oil based soulvent, hot meeting rooms/houses, I think fluressent lighting? Just tryiing this. A sudden change of weather and air pressure can bring it on as does travelling through time zones (jet lag)

Ok, now the "cures" or how to have the least worst cluster.
Regular meals, fresh air  very slow and long walk, neck and shoulder massage, keep clear of stressful situations if possible,  i once started an attak just as i was setting up a camp site, i had a blow-up air bed and decided to blow like the bloody wind into the thing, it hurt like hell as usual but 5 minutes of heavey blowing and the attack stoped and i felt great (for a whole day!) I just cant do this at 1-30 am at home when I'm tired and alone.

I hope to talk to some of you soon. I live in Southampton England. JXX
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sarah
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Re: Jerry has uust joined,Hi!
Reply #1 - Jul 12th, 2008 at 6:24pm
 
hi jerry ,, sorry to hear that your get the horrible clusters iv been like it for 17 years and omg i know wat u r going through ,, can i ask does the injection work as my nurse as just put me on it,,my clusters started again only been clear from them for 3 weeks and that one started in november and just gone grr ,,u r right it is the pressure and change ov weather.. av u heard ov the ice thingy ? i just left a comment on a diff cluster page am just waiting to hear them anyone ,,im willing to try anything lol ,,, i even got a black lab puppy the other week 12 weeks she is but shes really caring wen im on my o2 lol ,, well i hope to hear from u tc and hope u r pain free from sarah .uk hull Smiley oh this is my little puppy sadie  Grin
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sarah sarahcartercharlie@yahoo.com  
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Guiseppi
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Re: Jerry has uust joined,Hi!
Reply #2 - Jul 12th, 2008 at 6:41pm
 
Welcome to the nut house, it's a little quiet this weekend as most of the regulars are at the big conference in Dallas Texas, including Lelimey, a gal from your side of the pond. She'll be able to give you some tips on how to get the correct 02 set up over there.

The triggers you list are all very common triggers.

Now as to your meds, you haven't mentioned any prevenatative medications, those are meds you take regularly to help reduce the frequency and the intensity of the attacks. I use lithium, other popular prevents are topomax and verapamil. If I had to rely only on abortives I'd be burning up 02 tanks and trex injectors like nobodies business!!!! Might be worth doing a little reading and taking the info back to your doc, give him/her some "SUGGESTIONS!"

Only other suggestion is energy drinks, any containing the combo of caffeine and taurine, monster, rock star etc. Many can abort or at least substantially reduce a hit by chugging one at the first hint of a hit.

Glad you found us, hope we can help you!

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Guiseppi
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Re: Jerry has uust joined,Hi!
Reply #3 - Jul 12th, 2008 at 6:45pm
 
And I just realized that was your first post too Sarah! The imitrex injectors work really fast for me, in as little as 3-4 minutes. The down side is there is a lot of speculation on the board that imitrex may be extending the lengths of cycles for some. No hard and fast evidence but a lot of people are starting to suspect it.

Do you have oxygen? 30 years of these things and it's still my first line abortive. You might want to start a new post on the getting to know you board so everyone has a chance to say hi! Like I said in my last post, the board will be a little slow this weekend as many of our compadres are in Dallas having fun at the convention!!

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Jerry-English
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Re: Jerry has uust joined,Hi!
Reply #4 - Jul 12th, 2008 at 8:44pm
 
Hi guys it is 1-40 am in England. Im drinking coffee too scared to go to bed. Thanks for your  replys.
To answer your questions ive just swallowed 60mg of prednisolone as per Docs instructions.
I hope this will stop the cluster, it does help sometimes.
Hi Sarah, love youe puppy! My Jack Russell puppy has not seen me in attack mode yet but my last dog Jess was a real help!
My injections work very well! I would do ANYTHING to get hold  of them when Ineed Them! A HINT, inject into the middle of your bum cheek (butt in USA). I have mad the mistake of injecting into the calf mussel when in public. It hurt and did not work well.
Hi Guiseppi, thanks for the info, i am seeing my Doc next week and Iwill print off some O2 info for him, thanks!
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Brew
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Re: Jerry has uust joined,Hi!
Reply #5 - Jul 12th, 2008 at 8:52pm
 
Jerry - Has your doc instructed you to take the steroids first thing in the morning, upon waking? This most closely imitates the body's own production of adrenaline, which it is replacing.
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Jerry-English
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Re: Jerry has uust joined,Hi!
Reply #6 - Jul 13th, 2008 at 2:41am
 
Hi Brew

My Doc did not tell me that. I have just read the very small print on the pack of pills and it says take at breakfsat with food. I will take them now it's 7-40 am in England. Thanks very much for replying. Jerry
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maalstroom
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Re: Jerry has uust joined,Hi!
Reply #7 - Jul 13th, 2008 at 5:36am
 
Hi Jerry and be welcome among us.

I've translated an article from Germany into English, maybe it could be of some use for you.

Please read here:

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Best regards and painfree days soon from the Netherlands.
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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.
 
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Brew
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Re: Jerry has uust joined,Hi!
Reply #8 - Jul 13th, 2008 at 9:02am
 
One entire day's supply first thing in the morning. That's how I get the best result, and it also gives me the best shot at getting some sleep that night.
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Jerry-English
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Re: Jerry has uust joined,Hi!
Reply #9 - Jul 13th, 2008 at 4:09pm
 
thanks everyonn, you are very kind the pills i toke last night did keep me awake most of the night but i did not get an attack! Knackered now but will stay up till 2pm again.

Jerry xxxx Smiley
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