Rivaman Posted December 25, 2010 Share Posted December 25, 2010 newbie here.. just been diagnosed.. mid attack and still in shock too at the minute... OMG. been getting up to 4 attacks per day lasting between 1 and 3 hrs, wishing i had some oxygen now but docs prefer to hand out expensive sumatriptan tablets first for some reason.. bloody useless in my experience, by the time you've started to metabolise them it's too late, and it doesn't help when you're looking so desperate for help it looks like a junkie showing blatant drug seeking behaviour. and you're getting told that they themselves get migraine, I don't know about anyone else but i've seen lot's of people with migraine and never thought any one of them was in any where near in as much pain as i am feeling now. Like most of us I'm guessing, i'd never heard about cluster headaches until i was diagnosed... which still hasn't properly happened yet (my dr. said it might be CH on thurs 23rd and after looking it up I'm in NO doubt)... I think the point i'm trying to make is god damb i wish more docs could recognise this disease and put an end to many peoples suffering cos 1 or 2 percent of the population is still a lot of people.. who knows it could be even more than that, and in more ways than one that is the hardest thing i've ever had to write. Edit again... MERRY XMAS! Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted December 25, 2010 Share Posted December 25, 2010 Welcome to the community....sorry you had the need to find us though!!! You'll find a wealth of information and a great group of supporters here. Believe me, we all understand your frustration with docs......sadly, for now that seems to go with the territory!! Keep after him for the O2 or look into putting a welding O2 rig together......O2 therapy is by far the best bullet I've been able to put in my gun for the beast!!! Sending PF thought and wishes this Christmas morning!! Welcome Home!! Dallas Denny Quote Link to comment Share on other sites More sharing options...
Mad6string Posted December 25, 2010 Share Posted December 25, 2010 Ditto on the O2. It will help with the detox and getting prepared to bust, if that's the path you choose. Welders oxygen is the cheapest and fastest way to get relief. Remember to not tell them you are using it for clusters. Tell them you are doing some home fab on a project or nothing at all. You can get a regulator from the link in top left tab on this page. You need to read and understand as much info as you can before making any decisions though. Knowledge is power and you need to empower yourself to have the best chance to beat this horrible condition. Read and understand as much as you can and ask questions about the stuff you don't. Remember, there are NO stupid questions. If you don't ask then, you won't know. PF thoughts headed your way. Merry Christmas! Mad6string Quote Link to comment Share on other sites More sharing options...
tingeling Posted December 25, 2010 Share Posted December 25, 2010 Hi Welcome to you Ch`ers can`t possibly find a better place than this, when it comes to help, support and treatment. You will find allot of information in here, but also allot of posts that tells how life has changed completely, after finding Clusterbuster. This is reading that gives hope in a way no doc can give you. Because this is others like you. Your not alone about this anymore, your with us My best wishes to you from me Tingeling Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 Thanks a lot for your replies everyone. I'm feeling overwhelmed at the moment as this has probably been the hardest thing i've ever had to come to terms with.. Christmas day N all.. parents away on hols, so until i found this forum I really have been alone with it.. just got to try and wait for docs to open in 3 days.. for some reason i still feel like i shouldn't go to hospital with headache, extreme as it might be Quote Link to comment Share on other sites More sharing options...
tingeling Posted December 25, 2010 Share Posted December 25, 2010 i understand, i guess it comes from getting rejected time after time at hospital and docs in general. But we have every right to get help there. Your alone at the moment? Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 yes.. to be honest i've only been to hospital once.. after at least 4 weeks of untreated attacks it just got un-bearable. from what i've read I feel very lucky to have been diagnosed by my GP so soon after Quote Link to comment Share on other sites More sharing options...
tingeling Posted December 25, 2010 Share Posted December 25, 2010 what do you do to treat your attacks at the moment, to get some relief? Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 squirm about on the floor in total agony basically.. not been asleep properly for ages Quote Link to comment Share on other sites More sharing options...
Bonkers Posted December 25, 2010 Share Posted December 25, 2010 If you can get to the store, buy a few cans of one of the energy drinks like Redbull. Power 1-2 down as soon as you get a hit. Turn you home/car a.c. on full-blast and hyperventilate with your mouth/nose as close as you can to the register. Power down cold water. Try a combo of Tylenol/Advil (2 of each). Ice packs. Cold/hot showers. Run around the block. Push-ups. Others will offer other tips (or correct mine) till you can get oxygen and a proper diagnosis from a headache specialist. Chin up. You came to the right place. We can Help. Ron Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 gone through a lot of taurine and caffeine since yesterday.. made the error of drinking rum with it though. apart from that tried DHC. Asprin, diclofenac, but as you no doubt know painkillers don't do a thing.. had good results from THC, but the smell made me worse, could eating it be an answer? also been told to try melatonin. .any good? Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 25, 2010 Share Posted December 25, 2010 So sorry you're dealing with this. I'm not a CH sufferer myself; my daughter is, and I've been all over this board and others looking for solutions, so let me mention some things people have talked about here for emergency relief. Chugging RedBull or another energy drink with caffeine and taurine helps some people. Other fast ingestions of caffeine. Inhaling very cold air through your nose. Intense physical activity. Go to the hospital, tell them you have CH, ask to use their oxygen (15 lpm flow, non-rebreather mask, inhale deeply). Some have gone to fire stations or EMT stations with the same request. Here's a link to the Journal of the American Medical Association article about oxygen: Maybe print it and bring it with you: http://jama.ama-assn.org/content/302/22/2451.full  You must have the high flow rate and a mask, not cannula. It says so in the article. I suppose you might also get some kind of prescription or other emergency treatment (Imitrex, for example, and/or verapamil) at a hospital, or by calling your doctor. (Don't be afraid to call -- you need help; that's his job, Christmas or not.) People here caution about long-term use of the drugs prescribed for CH, but maybe in the short run they'd be good for you to use. (Needless to say, I'm not a doctor--just telling you what I've read and learned from my daughter's horrible experience.) If you can get to some oxygen, you should get relief within about 15 minutes, but keep going for another 5 to 10 or they're likely to come back. If it doesn't work in 15 minutes, wait 10 minutes and then start again. All these things are better if you catch an attack quickly. So stock up on RedBull. Others may add more. I hope you get help. Stay in touch here. Directly, or indirectly, we know what it's like, and people here will help you get past this. Jerry Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 not had total relief for over a week now, that's what was scaring me before i knew what was happening, i thought i was having a stroke or something.. never been so scared in all my life and amazed at how definate i can be about what's wrong.. I kept saying to the docs the only time i'd felt pain like it was after an operation but even that wasn't as bad, and they still kept saying it was migraine, ah well at least it's got a chance to get treated now i suppose, it just seems that in the UK it's more of a struggle to get whats needed.. I hope to be proved wrong Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 well.. time to start round 3 Quote Link to comment Share on other sites More sharing options...
tingeling Posted December 25, 2010 Share Posted December 25, 2010 I think it`s difficult wherever you are, sadly. Do you manage to get out? Guess UK have about the same weather as Norway. What helps me is moving allot out in the cold air. I stay out for hours now a days, helps allot. But this can be difficult when your already very tired from getting hit. I agree with Jerry, go to the ER, or call your doc. It is his job! Before i got my O2, my doc told me to go to the ER having O2. Maybe you could do that? Pill form doesn`t help much, they work too slow, you need Imitrex shot if you want to abort you attack. That way you get less of the drug as well, into your body. I cannot rec to use this drug in the long run, but when there isn`t anything else, or nothing works you got to do what you got to do, you need relief from this. Do you have someone who could go with you maybe, or call for you or something? Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 I know this is going to sound really silly, but, I have the biggest Phobia about hospitals and especially IV/IM injections, and now I know the pain will pass I find I'm a lot more well equipped to cope with it, just been out for a couple of hours in the cold but now I'm feeling the sudden warmth I may have inadvertently found a trigger, this message might take me a minute or two longer than i wanted. It's just hit me how careful I will have to be with the psychedelic remedies. It feels like a whole new dark world I've just discovered, a place I never knew existed.. Or could that be the hash oil I've just smoked?? anyway don't know if it's the cold or you mentioning Norway but it feels like the atmosphere of the film 30 days and nights or is that just my stoned ramblings and the dread of the tightness creeping up my neck and the spike in my temple? got to get up now.. why does relaxing make it worse? > Quote Link to comment Share on other sites More sharing options...
Bonkers Posted December 25, 2010 Share Posted December 25, 2010 When you're up to it, go to the Forum Jump at the bottom of the page and scroll down to ClusterBuster Files. Read all you can. Where do you live? There are many members here from the UK. You never know. Maybe someone lives nearby. Also - when you're up to it - go to http://www.clusterheadaches.com/wwwboard2/index.html. They are older than we are but set up much the same way. They're more "conventional" than we are here in their methods of treatment. Also, again when you're up to it, here's a couple of videos to watch: and You're home now. We'll do anything we can to help you. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted December 25, 2010 Share Posted December 25, 2010 STAY AWAY FROM THE WEED/THC! IT'LL JUST MAKE IT WORSE. TRUST ME ON THIS. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 25, 2010 Share Posted December 25, 2010 and the rum Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 I'm in Sheffield. and not quite what you'd call conventional myself been reading most of the day trying to get to grips with a whole new language.. I bough 2 bottles of rum yesterday and 've been so tempted to make a big dent in them but I think I'd pay for it tommorrow, yesterday i got hit hard while out and had a long walk back carrying shopping, It was so bad I've been nervous of leaving the house since, but i hope I can get used to it like you all seem to. you all seem so strong compared to how I feel. I can't stop shaking with fear most of the time just waiting for it to come, forcing myself to type and think seems to help though, as if fighting back against trying to give birth to my brain though my eye hole.. Now there's something i thought I'd never say Quote Link to comment Share on other sites More sharing options...
Hipshot Posted December 25, 2010 Share Posted December 25, 2010 Hey there new guy. Welcome to the board of the damned! Not really...with the treatment options that we can help you with you can and will find that this affliction isn't the end of the world. Oxygen and mushrooms. More oxygen and more magic mushrooms. First things first. Get an oxygen set up and you can gain a little peace of mind so you won't be terrified of the next hit. No exaggeration, o2 will save you when you do get a head attack. We all are in the same boat so it behooves us to work together as we all do. We are all here for each other. Sorry about your diagnosis but at least it didn't take you years and years to get it. Now that you know what you have you can take steps to prevent attacks and to abort them. I am living proof that mushrooms work. I was CCh for 7 hrs. I have taken all the drugs and had about all of the surgeries. And by the way, I did hash oil only once in my life. Wowee. Maybe we can trade shrooms for oil ;D Best wishes and merry Christmas to all. Dan Quote Link to comment Share on other sites More sharing options...
Rivaman Posted December 25, 2010 Author Share Posted December 25, 2010 Maybe we can trade shrooms for oil Grin it would be easier for me to trade the information on how to make it for yourself (rather than try and post a VERY potent parcel) but I don't mind spreading knowlege anyway ;D Quote Link to comment Share on other sites More sharing options...
Hipshot Posted December 25, 2010 Share Posted December 25, 2010 Send me a PM. I would love to get me hands on oil. I did it in the early 70's. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 25, 2010 Share Posted December 25, 2010 >>I'm in Sheffield<< gosh, your name looks welsh ;D people here have amazing stories to tell. my daughter went through six years of just enduring her multi-hour headaches, day after day, six months of the year, owing to a combination of misdiagnosis, bad doctors (even after she was diagnosed), bad reactions to some common CH meds, and, eventually, helpless despair. she somehow managed to keep a demanding job during that time, too. thanks to this board and a few pretty simple actions (like dan says), the horrible, nearly unbearable part is in her past now. you'll make it through this, and what you're going through now will be in your past, too. Quote Link to comment Share on other sites More sharing options...
TakinitEZ Posted December 25, 2010 Share Posted December 25, 2010 think that was 7 yrs, not 7 hrs, eh Hipshot? Welcome newguy. It sounds like you're getting a taste of the excellent care and information you'll get here. Definitely agree on the O2 front. Can help a lot, although sometimes doesn't work for folks unless used at the first sign. Problem is, you need to get through the next couple of days because nobody's gonna sell you O2 today or tomorrow. Red Bull type stuff does OK to help abort, but I think for a lot of people it doesn't fully abort. I agree with watching out for the pot, but it can really be helpful as an analgesic. I think the trick is to avoid the smoke altogether by vaporizing. For some reason, the smoke is a major trigger. This is all, of course, anectdotal information. Ting's suggestion of the cold is a good path, but also, like you said, steeping back into the warmth can trigger. I've had this happen. Just avoid a sudden warm up. Other tricks to consider for the two or so days you have little at your disposal: - low impact exercise if you can stand it - meditation and deep breathing - a spike mat and cool cloth over forehead - have someone close give you a head massage (easy folks, let's not be jokin here..) - hot tub - sleep it away as best you can, using melatonin which acts both as prevent and sleep aid - 9-12mg, available at drug store - Aleve or other basic analgesic - won't touch the ch but will help with secondary pains - muscle relaxer if you have one Hope this helps over the holiday, friend. Welcome and happy holidays. -T Quote Link to comment Share on other sites More sharing options...
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