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lincolnowl69
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hi to everyone
« on: Sep 9th, 2006, 5:39pm » |
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would like to say to hello to everyone out there, this is my first post and im posting after trying the 'imitrex tip', and i must say - absoloutly fantastic advice!!!!! i have been a CH sufferer for 10 years and the last 12 months a chronic sufferer, for the last 5 weeks i have been having headaches every 2 hours without fail, i use imigran injections and O2 but 12 headaches a day divided by the recomended 2 injections doesn't add up, so i was injecting more than the recommended as im sure a lot of you out there must of done in the past-naughty i know but if pain relief is there im afraid im going to use it! Anyway i tried giving the injection myself and splittng it 3 ways and can't believe the result, before i found the injection at 6mg (0.5) brought my headache on to full intensity immediatly before a swift cessation but at 2mg the pain has never really altered and just seems to disappear, maybe this just works in this way for me but i have been one very happy man the last couple of days, so i would like to thank the author of that trick, sorry for my ignorance i didn't catch your name but your up there just below god for me at the minute mate, cheers, Stu
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LeLimey
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Re: hi to everyone
« Reply #1 on: Sep 9th, 2006, 6:36pm » |
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Hello Stu!
Nice to meet you even if it does have to be here.
I'm not so far form Lincoln, I'm in Bingham in Notts so about an hour away.
Imigran is very fast acting on ch as you know but it has an extremely short shelf life (don't try saying that three times fast whatever you do!)
You might want to speak to your doctor/neuro about either zomig nasal sprays or frovatriptan tablets. The nasal sprays take about ten minutes to kick in but half a half life of 12 hours as opposed to Imi's 2.
Frova takes alot longer to kick in, up to 2 hours but if you take it in advance then its worth its weight in gold as it lasts for up to 26 hours.
The advantage of both of these is that you aren't either overdosing on actual injections OR overdosing on their constricting effects.
I don't know if you know how triptans work or not but I'll tell you anyway ('cos I'm like that  ) Triptans are a class of drugs called vaso constrictors. In a CH attack the blood vessels on the affected side of your head swell by up to 20 times their normal size - thats why it hurts so much!
What we need are drugs that bring them back down asap which is where triptans come in.. however there is a downside. They don't just constrict the blood vessels in your head but throughout your body which, if you have a dodgy ticker can be a problem.
Splitting the dose as per the imitrex tip means you aren't exceeding the stated dose in cc's of Imi but it does mean you are constricting those old blood vessels many more times in one day.. something you need to weigh up especially given that there are other triptans which have a longer half life and would be worth a try.
Do you take any preventatives? Have you ever tried Oxygen? Lets see if we can't get you some better options 
Looking forward to hearing more from you
Helen
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lincolnowl69
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Re: hi to everyone
« Reply #2 on: Sep 9th, 2006, 6:51pm » |
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hi helen,
yes im prescribed oxygen and find it fantastic at the onset of my daily attacks but not to clever on the night attacks, i mpre or less use it to dilute my pain before my injection kicks in. ive tried pizotifen, indomethacin and verapamil and didn't get much joy with any but my new doctor seems to think i was taking verapamil at the wrong dose so could go back down that path, im currently trying clonodine as a doctor friend of the family has had joy wih a CH patient of his so im trying it, not sure though at the minute, any views on clonodine?
Stu
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paulc
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Re: hi to everyone
« Reply #3 on: Sep 9th, 2006, 6:56pm » |
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[quote author=LeLimey link=board=knowya;num=1157837992;start=0#1 date=09/09/06 at 18:36:08]Hello Stu!
Nice to meet you even if it does have to be here.
I'm not so far form Lincoln, I'm in Bingham in Notts]
Why are you in Bingham (tied) in notts this time of night, Helen? 
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Paul C
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LeLimey
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Re: hi to everyone
« Reply #4 on: Sep 9th, 2006, 7:08pm » |
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Stu
please ignore "paulc"
He is our resident troll. He has had more handles here than you've had hot dinners and been banned while using most of them. I would strongly suggest you ignore everything he has to say.
The trouble with the night time attacks is they have usually got quite a grip by the time you get to doing anything about them. You might want to look into a ClusterMasx
I swear by mine, as a matter of fact the only abortive I use IS o2 and I would say its largely because of this mask.
Melatonin would be worth looking into for you as well, you might want to do a search on that on here.
Verapamil is front line defence for CH but the dose varies dramatically, there are people here on 320mg a day and people on 960mg. Its a very personal thing and increasing the dose until you get to where you need to be is something most people have to go through.
Pizotifen is next to useless, very old med and very ineffective. Indo is brilliant for paroxysmal hemicrania, a first cousin to CH but generally about as much use as a chocolate fireguard for CH.
I have no experience of clonodine so I can't comment on that one for you. Do you feel its helping at all?
Have you ever tried a prednisolone taper while ramping up on the verapamil? That is almost a standard now and hugely effective.
Helen
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lincolnowl69
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Re: hi to everyone
« Reply #5 on: Sep 9th, 2006, 7:17pm » |
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Ill take your advice on the 'troll' helen!!
im afraid its all new to me, i found imigran fantastic as i do oxygen but i really have been very negative about treatments due to the fact i was sure the bloody things were going everytime i got rid of a cluster-im a dreamer by the way!! i work as a forensic photographer for the met in london and spend half my time in lincoln and half in london, last july i worked onthe bombings underground at edgeware road for 3 weeks solid 18 hours a day and on the last day ended up in hospital due to no injections (hadnt had a cluster for 3 months) and im afraid since that day ive hardly had more than a week of pain free period at any one time so as you can imagine im very inquisitive to talk to the right people like yourself and welcome any advice youself or any other non 'trolls' can throw at me!! stu
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LeLimey
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Re: hi to everyone
« Reply #6 on: Sep 9th, 2006, 7:28pm » |
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Stu 99.9% of people here will go out of their way to help you. We all know this pain, we know how horrible it is, how it just destroys everything and how demoralising it is. We'll do all we can to help you have the best possible quality of life you can and trust me, there's alot we can help you with!
It can be very overwhelming when you first find us, so much info and so much to take in and it seems daunting in a way but take it at your own pace, we're more than happy to explain things over and over, to answer all questions, none are stupid if its something you want to know (unless of course you are an Arsenal supporter in which case everything out of your mouth is stupid )
I'll be arranging a couple of meet and greets in London over the next couple of weeks as I have friends from this site coming to stay. You'll be more than welcome to come and meet up with us and meet a few other ch'ers face to face if you want to! I'll let you know when I sort dates out if you would like that.
Helen
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maffumatt
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Welcome, and listen to Helen, she is a very wise and special lady. If you can attend a meet and greet please do, there is nothing like meeting another CH'er. It's an instand bond. an incredible bond.
Matt
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lincolnowl69
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Re: hi to everyone
« Reply #8 on: Sep 9th, 2006, 7:56pm » |
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hi matt, thanks for the advice i will take it!
helen, i have texted you my number and itll be great to go to a meet and chat, thanks , stu
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lincolnowl69
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Re: hi to everyone
« Reply #9 on: Sep 9th, 2006, 8:00pm » |
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and i'm a sheffield wednesday fan and im damn sure that has contributed to me going chronic!!!LOL
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LeLimey
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Re: hi to everyone
« Reply #10 on: Sep 9th, 2006, 8:04pm » |
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Sheffield Wednesday?
Is that a date or something cos it sure as heck isn't a football team! 
Bloody hell, this is going to be tougher than it looks everyone. Lets face it, we can sort his CH but we can't do much for his appalling taste now can we?!  
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lincolnowl69
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Re: hi to everyone
« Reply #11 on: Sep 9th, 2006, 8:14pm » |
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yep knew i should of kept that one to myself.at least you didnt say who?
on a serious note though if im in london i dont tend to go on line so its not that im being rude its lack of time but will always be online when back up north and of course tied to my mobile that is with a 'knot' and not in 'notts' for the 'trolls out there!! stu
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LeLimey
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Re: hi to everyone
« Reply #12 on: Sep 9th, 2006, 8:16pm » |
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Don't worry Stu, I'll text you as well as pm you here so you'll get the message!
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Dape
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Re: hi to everyone
« Reply #13 on: Sep 9th, 2006, 8:25pm » |
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on Sep 9th, 2006, 8:16pm, LeLimey wrote:| Don't worry Stu, I'll text you as well as pm you here so you'll never get away from me |
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Now thats more like the helen we all know and love
I agree whole heartedly with maffumatt the bond that we share, whether it is online or in person is out of this world and to be in a room with people who know exactly what we go through and wont say " ohhhhh i had 1 of them once" is beyond words.
Dape
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lincolnowl69
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Re: hi to everyone
« Reply #14 on: Sep 9th, 2006, 8:28pm » |
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hi dape,
i know what you mean, i also like the standard reply when you tell someone you have a headache......'yeah so have i, it's a killer' as he/she downs another pint of lager!!
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LeLimey
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Re: hi to everyone
« Reply #15 on: Sep 9th, 2006, 8:47pm » |
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Dape are you picking on me?! 
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Dape
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Re: hi to everyone
« Reply #16 on: Sep 9th, 2006, 8:50pm » |
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on Sep 9th, 2006, 8:47pm, LeLimey wrote:| Dape are you picking on me?! |
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I would never be that brave and especialy not on your birthday hon. 
Dape
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George_J
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Re: hi to everyone
« Reply #17 on: Sep 9th, 2006, 11:37pm » |
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Welcome, Stu.
You've met one of the best of us in Helen, so I won't add anything to what she has to say. Just wanted to say "hello" from the other side of the pond.
Look around, explore the links on the left side of your screen, and join in our conversations--some serious, some not so much so.
Welcome home.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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