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Title: New to all of this... Post by cathy on Dec 2nd, 2002, 3:55pm Hi my names cathy my husband has finally unfortunately been diagnosed with cluster headache after 3 years of hell... ??? |
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Title: Re: New to all of this... Post by ZAIRA on Dec 2nd, 2002, 3:59pm YOU ARE IN THE RIGHT PLACE CATHY, I AM AFRAID FOR YR. HOUSBAND I KNOW WHAT SUCH SUFFERENCE MEANS. YOU HAVE TO BE STRONG AND SUPPORT HIM ... MANY WISHES FROM ITALY. ZAIRA :-* |
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Title: Re: New to all of this... Post by echo on Dec 2nd, 2002, 4:01pm Sorry to read about your husband Cathy. Welcome to the group of CH supporters. |
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Title: Re: New to all of this... Post by OneEyeBlind on Dec 2nd, 2002, 4:05pm Welcome to the board cathy. If you can give us some more backround on what your husband has tried, what works, doesn't work we might be able to help if he is having a hard time finding relief. |
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Title: Re: New to all of this... Post by cathy on Dec 2nd, 2002, 4:13pm Wow so nice to be able to talk to people who really understand what we as a family are going through my husband Wesley (wes) has now been on Imigran 50mg after 3 years of Paracetamol!!!! it takes about 30 minutes to take effect and is now we think coming to the end of a 12 week spell, back to the neurologist on 16th december after having to pay for help. will push for injections at least attacks only now about 45mins instead of up to 3 hours, |
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Title: Re: New to all of this... Post by Edna on Dec 2nd, 2002, 4:16pm Hi cathy and sorry but glad to welcome you and your husband here........we're a nosy bunch here so give us more details and we'll dish out advice best we can Meanwhile, my advice is to read, read, read, and read some more......lots of great advice from ppl who've been there..........and when you're done reading all that's here.........LOL.......read it again LOL Good luck and let us know more about you.....hope to meet you in chat soon. pf wishes, EDNA |
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Title: Re: New to all of this... Post by Drk^Angel on Dec 2nd, 2002, 4:30pm Welcome to the board! Sorry that the beast is doin' a jig on your sufferer's cranium while wearing big, white-hot, solid steel, high heeled boots. Good luck! PFDAN............................... Drk^Angel |
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Title: Re: New to all of this... Post by cootie on Dec 2nd, 2002, 7:00pm cathy...Hello !! Bradley had 'bout a 3 year relief and he kept saying they wouldn't be back....but he was wrong wrong wrong ! His last cycle lasted a bit over 6 weeks...his attacks used ta last hours but this past episode were shorter and imitrex and verapimil were life savers....good luck ;) |
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Title: Re: New to all of this... Post by Jabeen on Dec 2nd, 2002, 9:26pm My sentiments echo the rest-sorry for your husband's pain, but this is a great place for help and info. The scary thing here is that there are so many different stories-no predictability with this shit! When I read some of the horror stories, I am actually thankful for my "version" of CH's. He is lucky for your support- :) :) :) |
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Title: Re: New to all of this... Post by Charlie on Dec 3rd, 2002, 12:22am Welcome to our madhouse. You and yours will find a little bit of everything here and most of it is helpful in one way or another. You're right. We all understand that this is not a "headache" or anything describable to anyone but a clusterhead. Here is a technique that helped me get through a lot. Good luck. Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: New to all of this... Post by Ted on Dec 3rd, 2002, 12:49am Hi Cathy, Watch out for Charlie. He's someone who pushes a transcendental meditation, imagery, relaxation, psychic technique. I think he's a Dr Phil wannabe. The shit of it all is people tend to get relief by trying what he says. Well, besides being a jerk to Charlie (who, mind you, is one of them pinko commies), I wanted to suggest you call the doctor before the appt and get a scrip of O2 to have your husband use at 8-10 liters per minute using a NON-rebreather mask. If it works it should abort an attack between 5-15 minutes. I wouldn't wait for his appt to get it. Get it now so the results can be discussed at the appt. |
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Title: Re: New to all of this... Post by j.halber on Dec 3rd, 2002, 7:55am Hi Cathy; Sorry to hear that you and your husband have joined the club of fighting the beast!The only advise i can add is to remember that what your husband has is not just a headache! It is way more than that!And although I'm sure anyone that has experienced this can tell you no-one except the suffer can really understand what we go through.So my advice is don't try.You see the concern, or lack of from our loved ones only adds more pressure in the head.Worry Worry filthy worry; very bad.As a cronic daily sufferer for the last 7 years I can only say let him be and let it take it's course, as there is ABSOLUTELY NOTHING you can do.....unfortunately.Above all take very good care of YOURSELF!!!!!!!! |
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Title: Re: New to all of this... Post by Edna on Dec 3rd, 2002, 8:21am sorry, but have to disagree with you a little there j.halber.........let's NOT send cathi the message that there is NOTHING she can do......think lots of other supporters here would also agree that cathi CAN DO something. SUPPORT......SUPPORT.....SUPPORT And cathi, being here is ONLY going to help you gain useful knowledge into treatment for your husband. Sorry you've suffered so long j.halber and hoping you at least have some kind of support there with you.......I DO understand (at least I think that is your meaning) that DURING an attack there is nothing cathi can do to help her husband........BUT......let's not steer her too wrong, there is much she can do to support AFTER the beast has left him for a time. Good luck cathi and keep us posted, meanwhile......keep reading here and to the left EDNA |
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Title: Re: New to all of this... Post by j.halber on Dec 3rd, 2002, 8:45am Sorry if I have offended but as Edna has brought to my attention, perhaps I worded it wrong. There is nothing you can do to stop the pain.And that is understandably very frustrating.As Edna correctly pointed out being there for him and supporting him are very important, but very very important as well is really understanding that, as hard as it, is and not getting sick yourself. Hope this is better. |
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Title: Re: New to all of this... Post by Mark C on Dec 3rd, 2002, 11:32am Sorry about the Beast entering you world. There are huge amounts of information avaliable on this website and The OUCH site, surf around and educate yourself and Husband. You are gonna need it. Knowledge is power and the Power is here. Good Luck, Mark |
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Title: Re: New to all of this... Post by catlind on Dec 3rd, 2002, 2:48pm Welcome aboard Cathy (great name btw ;) ) Sorry you and Wes are unfortunate in the need of the family here at Clusterville, but you are in good hands now. You can help row the boat along with the rest of us now :) You mentioned paracetamol and I wondered if you were in the UK. If you are, check out the OUCH UK site. There are lots of people there that are local and would be able to help you with anything that might be specific to the area. If I'm mistaken then ignore that bit LOL. Ted is right, get ye some O2!!!! That stuff is a life saver when used properly, i.e. NON rebreather mask, you don't want any ambient air, and a flow rate at a min. of 8lpm up to 15 lpm if you need. Ueli and Jonny are the O2 experts in the family, Ueli is in the UK I believe, and jonny, well he's from outer space but claims he lives in MA ;) Hope you find some of the info you want here, and welcome to the family :) Cat |
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Title: Re: New to all of this... Post by Svenn on Dec 3rd, 2002, 3:06pm I think that everything has been said here for now,so i can only add my welcome to Clusterville from Norway.There is a great bunch of the best friend in the world here,and you found the right place. Just keep us informed on things and i`m pretty sure that you can get help here. Svenn |
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Title: Re: New to all of this... Post by Edna on Dec 3rd, 2002, 3:44pm No need to apologize j.halber.........you didn't offend me in any way and I sure didn't want to come across that way....... it's not about being correct or not.......you were neither correct or incorrect....just offering what you knew........AND AFTER ALL thought that's what this place is for......so you did good :) :) :) Again welcome to cathy and yourself too since I've never really met you before or seen any of your post.....hoping to do so soon EDNA |
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Title: Re: New to all of this... Post by cathy on Dec 3rd, 2002, 6:05pm Hi all at clusterville a bit about myself I live in the uk cambridgeshire to be exact Wes and I have been married for 3 years together about 10 he's 48 and im 36 lucky man! we have 4 children, so much advice from you all thankyou, O2 im having trouble getting but im on the case now thanks to ouch uk and my sharp tongue...wes pain free today thank god. No offence taken about not being able to help but Im there to help if he needs it, otherwise to the astonishment of friends and family I carry on watching TV while my husband paces around the kitchen table, before banging his head on the wall as if its normal, because in our house it is!!!!! but then isn't that normal in any of our clusterhomes?? Anyhow as a supporter sometimes it makes me want to swear and shout and bang my head on the wall too, I want to scream and shout, it rules our lives when its here and is in our thoughts when its not. I love wes and my thoughts are with every one of you and if I have my way everyone will know about ch until somebody does something. Thankyou all for caring and listening, by the way its midnight here. |
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Title: Re: New to all of this... Post by WendyHowe on Dec 3rd, 2002, 7:06pm Hi Cathy Just to let you know in case you didn't that you have at least 500 British friends/supporters on the OUCh UK website as well. They are fantastic too, and were very friendly and helpful to me as a new one joining them last month. They also have loads of good information about the drugs, treatments and specialists that can help you in the UK, they can lend you the special high flow adapter and mask if your husband wants to try the Oxygen therapy without spending lots of money, and also there is a specialist expert CH research and treatment team in a hospital in London headed by a Professor of Neurology who will see you without a GP referral if you are having problems with your own treatment. I myself saw a fantastic neurologist not a million miles from you who is now advising my GP what to give me so that I can get the drugs on the NHS. The site is quite 'British', but none the worse for that. I look at this site and the UK site to get the best of every world. Hope all goes well for you both Wendy |
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Title: Re: New to all of this... Post by cootie on Dec 3rd, 2002, 7:38pm Yup....sounds like a normal clusterhome here too like cathy mentiond......I even got burned out "bad" after his cycle was over...... |
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Title: Re: New to all of this... Post by WendyHowe on Dec 3rd, 2002, 8:05pm Sorry Cathy Just realised that you are on the OUCH UK site already. Ignore previous post as you have already been offered the oxygen help etc Wendy |
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