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Topic: Good morning fellow CH sufferers! (Read 642 times) |
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Halmeister
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Good morning fellow CH sufferers!
« on: Nov 14th, 2007, 4:53am » |
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Hi Guys,
I've been suffering from what I now know as cluster headaches for the last 3 years, since I was 23. At first I thought it was a problem with my right eye, as I had an operation on it when I was younger...a trip to my optician quashed that theory.
Anyway, yesterday I went to my GP and he confirmed the diagnosis. I am currently going through an episodic cluster, of which I normally have about 3 a year and I have had one at this time of year for the last 3 years now and thay have lasted until after Christmas.
I normally get 2 or 3 attacks during sleep, looking at the KIP scale on this site I would say about 4 - 6 (which is painful enough!) and it is really begining to knock me out this time - lack of sleep etc. (hence going to see my GP). He has prescribed Zolmitriptan injections to inject myself at the onset of an attack and wondered if anyone else has tried these?
Anyway, I just wanted to say Hi, and that it's great to have this place as a resource and place everyone can talk about this rubbish illness.
Simon.
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LeLimey
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Re: Good morning fellow CH sufferers!
« Reply #1 on: Nov 14th, 2007, 5:49am » |
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Hi Simon,
Its nice to meet you but I'm sorry its here.
I've never heard of Zolmitriptan (Zomig) in injectible form, Do you mean Sumatriptan (Imigran)? To the best of my knowledge Sumatriptan is the only triptan currently available in this form and Zomig is available s a nasal spray or a tablet.
I just want to be sure which one you're taking so I can offer the best advice for you thats all.
Anyway - have you seen a headache specialist neurologist? If not - you need too. For one you need an MRI for an accurate diagnosis, you need to have any other causes for this intense pain ruled out.
Have you tried Oxygen? Thats my wonder drug of choice I have to tell you - magnificent stuff! I'll explain more if you haven't heard of it as yet.
Have you ever tried using ice or heat to help? Coffee or Red Bull? I'm asking quickly so you get a reply and I'll happily go back and explain stuff in more depth.
Helen
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Halmeister
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Re: Good morning fellow CH sufferers!
« Reply #2 on: Nov 14th, 2007, 6:14am » |
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Hi Helen,
I haven't seen a specialist neurologist - would this be something my doctor would recommend? My doctor is pretty clued up on the whole cluster thing and has a number of patients with the same ailment - he didn't seem to think it could be anything else.
My apologies, it is Sumatriptan that i have been subscribed - I pick up my prescription today so i have no feedback to give anyone yet. I have heard oxygen can work at the onset of an attack, have you had experience of this?
Ice works an absolute treat, in fact, anything cold soothes the pain (albeit marginally). I haven't specifically tried coffee or red bull at the onset of an attack - although i do drink coffee regularly...what are your experiences of this??
Thanks for replying, I am due to see my GP next week for a follow up, should I mention an MRI? What else could this pain be??
Simon.
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LeLimey
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Re: Good morning fellow CH sufferers!
« Reply #3 on: Nov 14th, 2007, 6:48am » |
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Ice works a treat for me too - if nothing else it numbs me a bit. Going out into the cold night air makes coping easier too and stuffy steamy kitchens - my nightmare!
Sumatriptan, actually ALL triptans are vaso constrictors. In a CH attack the blood vessels on the affected side of your head swell by up to 20 times in size. This is what causes the excruciating pain. Vaso Constrictors do what it says on the tin - they reduce the size of the blood vessels.
Caffeine, as in strong coffee and red bull will cause headaches for the majority of people as caffeine is a vaso constrictor whereas for ch'ers its one of our best "tools"! If chugged early enough in an attack it can abort it entirely which is very useful to know as you're only allowed 2 doses of any triptan a day.
I should also point out here that if prescribed triptans of more than one type you should mix them.. you need to leave 24 hours between taking Sumatriptan and Zolmitriptan for instance.
Sumatriptan is the only one recommended for CH as it is the only one in injectible form. Due to the morbidity of the pain of CH it is considered that no other method of delivery is fast enough so the only triptan recommended in your doctor's BNF IS Sumatriptan.
The downside is that its the one with the shortest half life too. An injection will last for up to two hours. Therefore I'm going to mention some other types ch'ers use so you can discuss them with your doctor.
Remember, none of us here are doctors, we are however expert patients! (Literally for me - I've done an NHS course!)
Anyway, here goes..
Zolmitriptan - this is available as a nasal spray. It takes up to ten minutes on average to kick in (which is where using O2 is useful as well) but then lasts for up to 8 hours. There has been a study referred to by Professor Goadsby at the Institute of Neurology in London which states it is actually safe to use up to three doses of Zolmitriptan via nasal spray within a 24 hour period.
Frovatriptan - This is actually a tablet and can take up to two hours to kick in so as an abortive is about as much use as a chocolate fireguard! However, its a stunning little weapon to have in your armoury as it can give up to 26 hours protection and you can take one every 12 hours. If you have hits at a regular time - say for instance 1am, take a frova at 10:30pm before you go to bed (or earlier) and it will block that completely. In order to get a nights sleep, for an important meeting, a family event, travelling - you name it - it's worth its weight in gold. I personally have found if I use ot for more than three consecutive days it will lose efficacy and the hits come back harder but others have used it continuously for a six week cycle with nothing like that happening to them. We all react differently.
I'd definitely recommend you discuss these options with your doctor to comeup with a treatment plan between you.
Now for Oxygen. O2 used at 15 litres per minute is also a vaso constrictor. Its brilliant and if I can get on it soon enough I can abort within 5-10 minutes easily. The beauty of it for me is that unlike triptans, which constrict blood vessels throughout your body as well as your head, O2 works only on the vessels in your noggin. Your doctor will have to fill out a HOOF (Home Oxygen Order Form) and if he ticks the box for "Ambulatory Oxygen" you can have small portable cylinders which you can take out and about with you. Very useful to have so make sure he does. Also if he writes Cluster Headaches in the comments box your supplier (which will be Air Products) will know to bring masks for you too.
Okay now lets talk caffeine again!
Coffee as mentioned is great as is Red Bull or all its el cheapo equivalents - Asda own, Tescos, even Aldi's all wrok equally as well but are significantly cheaper! The beauty of red bull (to use a name rather than recommending a brand) is that its so easy to carry a can with you. Those energy drinks with caffeine also contain taurine which acts as a turbo boost on the caffeine so it works VERY well!
You need to chug it at the first twinges though. Its no time to be genteel - you need to throw it down your neck in record time!
This is one hell of a lot of info I know. I'll happily answer any qeustions as will everyone else here - we'll get you through this I promise!
Helen
PS One thing I forgot - you asked about seeing a neuro and what else this pain could be. I'm not saying your doctor is wrong for one minute BUT - you need an MRI to rule out anything insidious like a tumour. I believe it takes a neuro to order one, a GP can't. With pain this intense you need to be sure there isn't anything else going on inside your fizzog although, in fairness, I can see you're from the 'pool so anything going on in your head would be a miracle wouldn't it?!! 
You'll also learn - I don't play nice for long!!!
Regards
Helen
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Halmeister
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Re: Good morning fellow CH sufferers!
« Reply #4 on: Nov 14th, 2007, 7:40am » |
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Helen,
Thanks for your help, I've just picked up my prescription and the needles are HUGE!! I'm a little bit scared!
I'll try the Red Bull - I usually get an attack about 4 o'clock so i'll probably be able to try it out then.
As for the Liverpool comment, I'm technically on the Wirral i just thought with so many Americans on the site, Liverpool would be more recognisable - so i'm not offended!
Thanks again for your advice - i'll keep the board notified of my progress.
Simon
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LeLimey
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Re: Good morning fellow CH sufferers!
« Reply #5 on: Nov 14th, 2007, 7:43am » |
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Simon have you not got auto injectors for the Imigran?
You know - like the "pen" things diabetics use?
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Guiseppi
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Re: Good morning fellow CH sufferers!
« Reply #6 on: Nov 14th, 2007, 10:55am » |
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Well the scary witch lady  has already given you awesome advice so I'll just say welcome to our little corner of the world, and your new second home!!!
Guiseppi
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Halmeister
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Re: Good morning fellow CH sufferers!
« Reply #7 on: Nov 14th, 2007, 11:22am » |
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Hi guys,
I have got the pen things, I've figured out how they work now - the pharmacist tried to show me and didn't have a clue and it ended up with this huge needle sticking out! Anyway, i'm not so worried now but I did try the red bull solution before, and I must say it seems to have worked a treat!!
Thankyou all again.
Simon
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Guiseppi
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Re: Good morning fellow CH sufferers!
« Reply #8 on: Nov 14th, 2007, 12:17pm » |
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I'm the biggest needle wimp on the planet and the auto injectors are no problem. Push the pen hard enough against your tush and I swear you won't even feel the shot! Hope they work as well for you as they did for me.
Guiseppi
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LeLimey
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Re: Good morning fellow CH sufferers!
« Reply #9 on: Nov 15th, 2007, 3:05pm » |
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What JuicyPee is trying to say Simon is that it really IS only a little prick
How are you getting on with it all?
Helen
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Guiseppi
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Re: Good morning fellow CH sufferers!
« Reply #10 on: Nov 15th, 2007, 3:30pm » |
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Did Lelimey just call me a little prick????? 
Guiseppi
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LeLimey
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Re: Good morning fellow CH sufferers!
« Reply #11 on: Nov 15th, 2007, 3:41pm » |
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Since when are you an auto injector dopey?!
You're my "Sam Elliot" lookalike you daft ha'porth - you KNOW I love you the mosterest! 
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Guiseppi
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Re: Good morning fellow CH sufferers!
« Reply #12 on: Nov 15th, 2007, 4:48pm » |
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Guiseppi is back in his happy place
Guiseppi
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Halmeister
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Re: Good morning fellow CH sufferers!
« Reply #13 on: Nov 16th, 2007, 5:05am » |
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Helen,
Ironically, I haven't had an attack since my prescription! Had a shadow in work on Wednesday but a can of redbull sorted that out nicely (hate the taste but it is certainly worth it). Haven't had any nighttime attacks either for the last three nights - woke up with a 2 or 3 this morning...maybe they're on the way out? I can always hope.
I've also passed the beer test - but beer has never really triggered an attack. I find a major trigger is a hot bath before bed...which I love but have had to give up!
Thankyou for your interest, I will keep you all posted!
Simon
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LeLimey
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Re: Good morning fellow CH sufferers!
« Reply #14 on: Nov 16th, 2007, 10:13am » |
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It could well be the end of your cycle and I'll be keeping my fingers crossed for you!! I'd recommend leaving at least a couple of weeks before risking a beer though.. or a bath you smelly git! (I just leave the door open while I'm in the bath then its not so "steamy" in there - seems to work!)
Good luck!
Helen x
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