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Title: new member Post by nailbiter on Aug 10th, 2005, 9:27pm [flash=200,200][/flash] :'(Hi everyone my real name is brian. thank god I've found you. I'm ten days into my cycle. It is now 3.25am GMT. The CH wokr me from my sleep at 2.30am and its only now thar i'm able to typr this message. I live in the UK |
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Title: Re: new member Post by E-Double on Aug 10th, 2005, 9:47pm Hi Brian, We sure as hell know what you are going through. I am so sorry that you are, however welcome home!!! How long have you been dealing with these bastards? Do you take any meds, preventative? abortive? There is a group in the UK called OUCH UK (organization for understanding cluster headaches) Check out this link: http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD If you are not on any meds here are Some tricks that I used to use and sometimes still do: *Wrapping a bandana tightly around my skull (be careful) *Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering it. *Going from Steam to Frigid shower. *Standing infront of A/C *Icepacks or frozen veggies on the back of the neck or eye *Tons of STRONG coffee. I am not sure if you can get melatonin in the UK. In the states it is an over the counter suppliment. If you can and since it seems that you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... If not some people find Benadryl effective. As far as meds go.... This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 Hang in there my new friend!!! Eric |
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Title: Re: new member Post by cazman on Aug 10th, 2005, 10:03pm welcome brian grab a chair have a seat and read everything here that you can and dont give up it will end it wont last forever talk ask for help ask as many questions as you like bro we feel your pain believe me we do . |
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Title: Re: new member Post by lionsound on Aug 10th, 2005, 10:23pm Hi Brian, I am so sorry that you are hurting right now. We understand. You are not alone. Eric gave lots of good info above. Things like the ice you could try right now for comfort. Welcome.....Very glad you've found us. :) Be well and PF, lionsound |
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Title: Re: new member Post by Jasmyn on Aug 11th, 2005, 12:00am Hi, Brian. Here you will find the support you need to help you through this nightmare, as everyone here understands and supports each other. Welcome. |
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Title: Re: new member Post by burnt-toast on Aug 11th, 2005, 1:32am Some background information would be helpful. There are a lot of good folks here for support and plenty of helpful information available. We do know how difficult this nightmare can be. Welcome aboard Tom |
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Title: Re: new member Post by LeLimey on Aug 11th, 2005, 4:42am Hi Brian, I missed you by minutes last night, I'd only just gone to bed when you posted by the looks of things.. pretty much the same reason. I was afraid of going to sleep because I knew what would happen. I'm in the UK too, in the Midlands. Welcome! I'm sorry you've had to come looking. What meds are you currently using? have you tried O2? Have a look at OUCH UK. Its in England so it's fantastic for us as it has all the meds listed under names our doctors recognise. There are ALOT of differences believe it or not and as you've no doubt found.. not many doctors are clued up on CH are they?! http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD There is also a GP website aimed specifically at doctors which you can give to your doctor if he is open to looking which will be of alot of help to him (and thereby you!) http://gpinfo.ouchuk.org/ Finally OUCH UK have a helpline manned by supporters which you can ring and speak to someone who suffers CH. If you have never spoken to another sufferer before give them a ring, I can't begin to explain to you what it feels like to be amongst people who know. The number is 0161 2721702 and its an answerphone. Leave your name and number and someone will call you back asap Oh and we are planning a North West Meet and Greet in October time so you'll haveto maybe think about coming along! None of that excuses you from posting here and letting us know how you are getting along either though so don't think it does okay?! Take care Helen |
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Title: Re: new member Post by jcmquix on Aug 11th, 2005, 4:59am Hi Brian... Welcome, nice to meet you, sorry its under these conditions. Listen to what E-Double and LeLimey have posted here, its good advise. We are not Dr's, but we have alot more information on CH and the Med's used to treat them. The people on this site are also a good form of Medicine, the best support you will ever find and we all know what you are going through, we have all either been there or are there now. The lights are always on here, if you need to talk to someone or just need to vent. Pain Free Days to You !! Charlie |
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Title: Re: new member Post by nailbiter on Aug 11th, 2005, 9:06pm :)2.50am GMT Eric Thanks for all your tips. The bastards were first diagnosed by a doctor when I was nine years old - almost 50 years ago. I take 2.5mg naratriptan hydrochloride at the onset of an attack but I can't take more than two tabs in a 24 hour period. They don't work. Thanks for the OUCH UK website. I'll look it up. I havent's tried your steam bath and shower remdies. I'll give them a whirl lol. I do like coffee tho. Ther other drugs you've mentioned might be manuufacuted under a different name here. I've never heard of them. Haven't gone to bed yet. I've just got over one. I had 2 nocturnal attacks last night and three during the day. Brian Cazman Thanks for your suport and empathy. Its a comfort to know I'm with friends. Brian Hi Jasmyn Thank you too Brian Hi Tom It'as nice to be among friends who understand Brian Hi Helen Thanks for all your tips. I'm gonna folow them up. I'm using NARAMIG (2.5mg naratriptan hydrochloride). They're no good. Haven't tried )". Need to know how it works. I'll look at OUCH tomorrow. Unsure about GPs reaction to look on the website. He may feel precious lol. Thanks for the phone number. I've put it in my telephone book. I'm interested in the North West Meet and greet in october. You can send me the detailsa if you like. Brian |
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Title: Re: new member Post by E-Double on Aug 11th, 2005, 9:40pm If you are going to use triptans, Imitrex Injections or Zomig NS or Zomig ZMT work the fastest!!! In the UK I am pretty sure you can get tons of Trex cheap! Hang in there and around 24/7 if ya need Regards, E |
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Title: Re: new member Post by sassy_lady on Aug 11th, 2005, 10:01pm Hi Brian, Nice to meet you, sorry it's over the Beast, there is alot of info & support here, good luck & welcome !! Lost of love & prayers to you & yours !! Jolene |
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Title: Re: new member Post by LeLimey on Aug 12th, 2005, 2:37am Hello again Brian Details aren't finalised for the meet in October yet but it is likely to be either Liverpool or Manchester (porbably Liverpool as they guy most likely to organise it lives there!) I will definitely let you know as soon as I do though! Be aware alot of the names for meds do vary and it does get GP's backs up if you use the US versions.. God knows why! (You know Brit GP's!) Imitrex for instance is Imigran in the UK) If you want to check any meds names with me or the OUCH UK website or helpline fire away.. all of us will help you happily. Not many remain the same.. um.. actually I can't think of any of the top of my head that do stay the same apart from Verapamil! :-/ Naramig are about as much use as a chocolate fireguard if you don't mind my saying so... Have a think about Imigran injections. They are a tiny little injection in a pen so you literally hold this thingy over yourself and push a button and it just clicks and pricks! Its another triptan but very effective!! 5-10 minutes to kill the beast stone cold dead! Its also actually the only licensed treatment for CH in the UK so if your doctor baulks (they are expensive) he hasn't got the grounds to refuse you as anything else is actually an unlicensed drug... Having said that.. seriously consider asking for O2. GO to OUCH UK and look under treatments at Oxygen then CD Oxygen. These are cylinders which come with an integral regulator so no messing about. YOu will also need a non rebreathing mask which you will need to buy yourself (about a £5er) Your GP may not be happy about prescribing o2, some aren't but refer him to the new o2 guidelines which specifically mention cluster headaches under SBOT!! (short burst oxygen therapy) We have Mo Graham, one of the Trustees of OUCH to thank for that as she tirelessly lobbied Parliament to get that and considering that CH is the only condition listed in SBOT and the ch'ers use LESS THAN 1% of o2 in this country that will tell you what a phenomenal achievement this is! (Can you tell how proud we are of her?! ;) ) Anyway, if you need anymore help with O2, ring the helpline, or put a message up on the support board as they might be able to tell you something I've missed.. they ARE alot more knowledgeable than me. I'll always help in anyway I can though and so will everyone else here, Keep updating us too okay?!! Helen |
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Title: Re: new member Post by nailbiter on Aug 16th, 2005, 6:45pm :) Hi Helen & Eric 12.20am GMT. The Beast peaked over the weekend. I was up all night Friday and Saturday. Then at 7.45am Sunday I had an attack that lasted till 2.00pm. THe longest attack I've had in my life. As the GP surgery was closed I was taken to the casualty department of our local hospital. I asked for oxygen. It gave me relief but didn't take the pain completely away. The doctor who saw me told me that the only available nasal sporay on prescription was Imigram. He gave me a prescription for the highest dose (20MG/O.1 ML). The spray has worked a treat for although I'm still woken with the pain when I inhale a shot it numbs the instantly with total relief within fifteen minutes. Thanks for your help and advice. I've also applied to goon the oxygen trials conducted jointly by London University & BOC. I may not get on them because the trails started in March. However I am an identical twin and he suffers from cluster headaches too. You know how medical scientists love twin studies. Cheers Brian |
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Title: Re: new member Post by E-Double on Aug 16th, 2005, 6:52pm hang in there Brian |
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Title: Re: new member Post by RichardN on Aug 16th, 2005, 10:29pm Hi Brian and Welcome I'm another huge proponent of 02. I'm 58, and can't take triptans due to some arterie blockage and high cholesterol, so 02 is my only abortive . . . . I'm usually able to kill the beast in minutes if caught early on in the attack. Night hits might take 10-15 min. . . . . rarely more. And you can save the triptans for the attacks the 02 won't reach. It's very important you get the proper regulator and mask. I will bug you about this until you try it . . . . works for about 70% of us when used correctly . . . . easy, inexpensive, safe (proper precautions of course) Read, read, read, and ask any questions you may have. This place saved my life and gave me the means to battle our common horror. And here, and only here can you communicate with folks from arround the world who truly know your pain. And . . . . how will we know when it's you and not your twin? ;;D Be Safe, PFDANs Richard |
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