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Topic: Hiya all (Read 328 times) |
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caroline4612
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My name is Caroline, Im 41 and I've been suffering the demon of hell for 15 years. Started off episodal after the birth of my second child (not sure if there is a connection there) and now I believe I've gone chronic because every time I try to cut down on the verapamil it comes back worse than ever and stays. Spent more than a decade going to the docs and tried absolutely everything to get rid of the beast and came to the conclusion I was going mad cos no one seemed to take the hideous pain seriously.
Jogging around the garden in my nightie at 3am became the norm as I found big gasps of air slightly helped and got into headbanging the furniture big time. Discovered vast amounts of water slightly helped too.
Marriage started to be put under pressure and the kids had a rubbish Mum and then there came the fantastic day I diagnosed myself on the internet. The relief was enormous and that the beast actually had a name (although I dont think clusterheadache is quite a good enough word for it. Told my doctor what I has - he looked it up on the internet and agreed - and I got my verapamil and sumatriptan injections which I could not possibly live without.
Get fed up with sticking a needle in my leg but if someone told me I had to stick it in my eye I would compared to the alternative. Alcohol is the big trigger and some rich foods.
The last twice I have flown on holiday I have had attacks and put it down to being an unlucky swine but think high altitude flying may be a trigger for me as well.
This site is a godsend as you don't feel so alone. I have never met or heard of a fellow sufferer and most people dont understand
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BB
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Re: Hiya all
« Reply #1 on: Apr 22nd, 2007, 6:41pm » |
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Hello Caroline,
Welcome and thanks for telling us about yourself.
I am glad the verapamil and trex injections are working for you. Verapamil is just a blood pressure medication and its safe to be taken longterm, so if its working well its OK to keep going.
Have you tried oxygen ? If you find gasping cold air helps then you should ask your doctor for a prescription for home oxygen, with a high flow ( up to 15L/min ) regulator and a non rebreather mask. You may find that it will abort the attacks very quickly without you having to use the injection.
If you get night hit then melatonin supplement between 6 and 12 mg at night may also help stop them.
Take some time to read the board, the information available here is incredible and will be so helpful to sufferers and supporters alike.
Take care and painfree wishes to you.
Annette
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Guiseppi
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Re: Hiya all
« Reply #2 on: Apr 22nd, 2007, 10:45pm » |
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I'm with Annette! Try oxygen. I'm episodic, when I'm on cycle I do lithium as my prevent, and oxygen as my first abortive. If I start my oxygen at the first twinge I can knock the beast out in less then 10 minutes. It's cheap, no side effects and has been very effective for me. Welcome to the board, you are NOT alone, there is always someone here to hug you, offer some advice, or just let you vent. I hope you find some relief soon, I agree Clusterheadache is a piss poor description of this thing!! 
Guiseppi
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LeLimey
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Re: Hiya all
« Reply #3 on: Apr 23rd, 2007, 4:34am » |
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Hi Caroline its nice to meet you!
I'm a fellow sufferer in Notts 
A couple of other "home remedies" that help me are ice packs (frozen peas aren't for eating in this house!) on the back of the neck and the side of my face I get hit on.
Cold air (like you I'm a get out in the garden type!) and caffeine.
Strong coffee or Red Bull (el cheapo equivalents work just as well) are a godsend too.
Cafffeine is a vaso constrictor so it works in the same way as the injections and if you can drink it at the first twinge it can knock it right out - brilliant stuff! I always have some with me. The high energy drinks contain taurine as well as caffeine and that acts as sort of a turbo boost for the caffeine so they really help but you ave to swig it as fast as you can - no being a lady!
Have you tried Oxygen? That is my absolute favourite abortive - I can abort a hit in 5-7 minutes. I'll happily tell you more about it if you haven't tried it or would like to try it again.
Hope this all helps! Looking forward to hearing more from you
Helen
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Callico
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Re: Hiya all
« Reply #4 on: Apr 27th, 2007, 12:50am » |
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Dittos to the above! Red Bull or one of the cheaper equivalents works well for me, specially if I am out of the house and need something quick. Also, a LOT of strong coffee helps me.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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michael
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Re: Hiya all
« Reply #5 on: Apr 27th, 2007, 1:10pm » |
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Hi Caroline
I started using the imigran injections about 6 years ago and I admit they are a miracle. They will remove a hit within 10 minutes. Since using them though my clusters seem to have changed. I now get a lot more frequent hits when in cycle - 4 a day instead of 1. I also get frequent, what I would call hangover type headaches when not in cycle which I need an imigran radis tablet to remove. I noticed on my last cycle (which has just ended) that the instuction leaflet for the injections now says they can cause rebound headaches. It never used to say that. Be careful how many you have and explore this site for other treatments, there is a world of info here.
Mike
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caroline4612
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Re: Hiya all
« Reply #6 on: Apr 27th, 2007, 1:54pm » |
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on Apr 22nd, 2007, 6:41pm, BB wrote:Hello Caroline,
Welcome and thanks for telling us about yourself.
I am glad the verapamil and trex injections are working for you. Verapamil is just a blood pressure medication and its safe to be taken longterm, so if its working well its OK to keep going.
Have you tried oxygen ? If you find gasping cold air helps then you should ask your doctor for a prescription for home oxygen, with a high flow ( up to 15L/min ) regulator and a non rebreather mask. You may find that it will abort the attacks very quickly without you having to use the injection.
If you get night hit then melatonin supplement between 6 and 12 mg at night may also help stop them.
Take some time to read the board, the information available here is incredible and will be so helpful to sufferers and supporters alike.
Take care and painfree wishes to you.
Annette |
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Thanks for the advice Annette. Have not been able to try oxygen as my doc says no. Dont think ive bullied him enough
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caroline4612
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Re: Hiya all
« Reply #7 on: Apr 27th, 2007, 2:06pm » |
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on Apr 23rd, 2007, 4:34am, LeLimey wrote:Hi Caroline its nice to meet you!
I'm a fellow sufferer in Notts
A couple of other "home remedies" that help me are ice packs (frozen peas aren't for eating in this house!) on the back of the neck and the side of my face I get hit on.
Cold air (like you I'm a get out in the garden type!) and caffeine.
Strong coffee or Red Bull (el cheapo equivalents work just as well) are a godsend too.
Cafffeine is a vaso constrictor so it works in the same way as the injections and if you can drink it at the first twinge it can knock it right out - brilliant stuff! I always have some with me. The high energy drinks contain taurine as well as caffeine and that acts as sort of a turbo boost for the caffeine so they really help but you ave to swig it as fast as you can - no being a lady!
Have you tried Oxygen? That is my absolute favourite abortive - I can abort a hit in 5-7 minutes. I'll happily tell you more about it if you haven't tried it or would like to try it again.
Hope this all helps! Looking forward to hearing more from you
Helen
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Thanks Helen. Have found caffeine works for me also. Tried really hard a couple of years ago to get a tank of oxygen from my doc but he seemed incredulous that I dared to ask. I am going to really push it this time as it sounds like its just what I need
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caroline4612
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Re: Hiya all
« Reply #8 on: Apr 27th, 2007, 2:09pm » |
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on Apr 22nd, 2007, 10:45pm, Guiseppi wrote:I'm with Annette! Try oxygen. I'm episodic, when I'm on cycle I do lithium as my prevent, and oxygen as my first abortive. If I start my oxygen at the first twinge I can knock the beast out in less then 10 minutes. It's cheap, no side effects and has been very effective for me. Welcome to the board, you are NOT alone, there is always someone here to hug you, offer some advice, or just let you vent. I hope you find some relief soon, I agree Clusterheadache is a piss poor description of this thing!!
Guiseppi |
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Cheers Guiseppi. Its a great feeling to know you're not alone
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LeLimey
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Re: Hiya all
« Reply #9 on: Apr 27th, 2007, 2:14pm » |
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If you need any help with getting o2 let me know Caroline, I'll do all I can to help!
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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caroline4612
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Re: Hiya all
« Reply #10 on: Apr 27th, 2007, 2:23pm » |
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on Apr 27th, 2007, 1:10pm, michael wrote:Hi Caroline
I started using the imigran injections about 6 years ago and I admit they are a miracle. They will remove a hit within 10 minutes. Since using them though my clusters seem to have changed. I now get a lot more frequent hits when in cycle - 4 a day instead of 1. I also get frequent, what I would call hangover type headaches when not in cycle which I need an imigran radis tablet to remove. I noticed on my last cycle (which has just ended) that the instuction leaflet for the injections now says they can cause rebound headaches. It never used to say that. Be careful how many you have and explore this site for other treatments, there is a world of info here.
Mike |
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I never made the connection between the hangover type headaches and the imigran before. Must admit its been a while since i read the instruction leaflet. It all makes sense now. My hits have also changed pattern. Thanks very much for your post. I will continue my battle to obtain a tank of O2 from my doc so I can hopefully cut down the number of jabs. Hope its a long time til your next cycle
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caroline4612
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Re: Hiya all
« Reply #11 on: Apr 27th, 2007, 2:29pm » |
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on Apr 27th, 2007, 12:50am, Callico wrote:Dittos to the above! Red Bull or one of the cheaper equivalents works well for me, specially if I am out of the house and need something quick. Also, a LOT of strong coffee helps me.
Jerry |
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Cheers Jerry. I always craved coffee just before a hit and it took me a while to make the connection. Not a big red bull fan but will drink loads of the stuff if it will help
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caroline4612
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Re: Hiya all
« Reply #12 on: Apr 27th, 2007, 2:33pm » |
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on Apr 27th, 2007, 2:14pm, LeLimey wrote:If you need any help with getting o2 let me know Caroline, I'll do all I can to help!
Helen |
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Many thanks again Helen. I thought it just must be hard to come by in England but if you have it then there is hope. I will be in touch for advice if I have major problems
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Callico
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Re: Hiya all
« Reply #13 on: Apr 27th, 2007, 6:05pm » |
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Don't request, DEMAND O2. There is no good medical reason he should deny it other than his own ignorance and/or stupidity. Ignorance can be corrected, but ... .
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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