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Title: Scared for my Son ! Post by MissJam on Nov 29th, 2006, 10:17am Good morning everyone. I really love this site. My Son has been having clusters for years. He is 35 and has moved in with me this year . When he has his headaches.I feel so helpless ! I want to do something, but I just keep busy and wait till the medication kicks in . He cries and paces. And keeps saying 'Not again " Why ME!" All I want to know is how does a Mother cope and try too help??! How do I get on a buddy list?..MissJam |
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Title: Re: Scared for my Son ! Post by LeLimey on Nov 29th, 2006, 10:21am Miss Jam we'll do all we can to help you I promise. I'm a sufferer and a mum with a son with CH too so I know what you're going through. Theres a lot we can do to help AND WILL. We need a little information though honeybun, what meds is your son on if any? What has he tried in the past and did it help or not? What helps? ie heat cold etc. I'll keep checking this post for your replies, don't worry though, you are NOT on your own with this and nor is he! HUGS to you Helen |
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Title: Re: Scared for my Son ! Post by NovellRed on Nov 29th, 2006, 11:03am Thank god for this site and message boards. You are among friends here and those who really do know what you are going through. Why me? No reason, just the luck of the draw. We all feel that way during an attack. We didn't do anything to deserve this, but here we are never the less. We do have each other and most of the time that is just enough to make the difference. I probably sound like a broken record here, but has he tried oxygen? If not I highly recommend getting a tank and using it at the first sign of an impending attack. Breath 100% oxygen as deeply as possible. It doesn't work for everyone, but for me it is nothing short of a miracle. Keep us posted, we are all here to help. |
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Title: Re: Scared for my Son ! Post by Bob_Johnson on Nov 29th, 2006, 11:21am I hope the meds you refer to come from a doc with good experience treating headache--and not OTC pain stuff. If he needs leads to a good doc and/or literature on treating cluster, get back to us. As for your ability to assist him: Each of us has our own style of coping. Some like to be absolutely alone in a dark room--stay away style. Others like some personal support but you can only ask him what he wants from you and then deliver. This is not the time to press anything on him which he has not asked for. |
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Title: Re: Scared for my Son ! Post by MissJam on Nov 30th, 2006, 9:53am Helen, Thank You so much for your prompt reply!! My son is on fluoxetine pills and they seem to work . The perscription is from a physians assistant, nothing over the counter touches his CH. He has tried oxygen but didnt work. The ice pack helps ease it too. He is a smoker, which doesnt help. I live in Maine , USA. Are there any good Doctors anyone can recomend. He has no insurance. ...MissJam |
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Title: Re: Scared for my Son ! Post by LeLimey on Nov 30th, 2006, 10:26am Hi Miss Jam! Fluoxetine is an SSRI which is interesting as although its an anti depressant and might seem an odd choice, seratonin levels have been found to be low in ch'ers so I for one would think it well worth a try. Sadly what works for one doesn't work for all as I'm sure you and he already know! I would suggest you look here http://www.ouch-us.org/chgeneral/doctors.htm for a doctor, its a list of doctors recommended by other sufferers. I would also recommend you contact the OUCH Family Services Team as a finer more helpful bunch of people you'll be hard pushed to meet. http://www.ouch-us.org/familysvs/familysvs1.shtml Since he doesn't have insurance at the moment I'd like to recommend some OTC remedies that have been found to be very efficacious. Number one and top of the list of abortives (things to stop a hit once started) is Red Bull or generic equivalents. I say buy the stores own make as its just as good (and tastes just as ghastly!) They all have caffeine and taurine which increases the effect of the caffeine. Caffeine constricts your blood vessels which swell by up to 20 x their normal size within a hit so you can see why it stops the pain! You need to chug it as fast as you can at the start of a hit, as early as you can. No being dainty, you need to get that in you asap! Coffee, strong coffee is a clusterheads friend too. Ignore what other say about caffeine being bad for headaches, cluster eadaches are vascular, the pain comes from the blood vessels swelling (basically) so it is not the same as any other pain. If the majority of his hits are at night you might want to look into melatonin which has been very successful for a lot of people here at both blocking hits and reducing their severity. You'll find more info on that on the meds board. You might be interested in reading about Kudzu there too. There is a website written by one of our own from this site which is brilliant and I love it http://www.med-owl.com/clusterheadaches/tiki-index.php Very interesting, very informtive and very easy to read :) As to Oxygen, that's my "drug" of choice first time all the time and my son's too. Reasons it may not work are too low a flow rate, the wrong type of mask or cannula etc, its worth getting the right info from here and maybe trying again as it is the least invasive treatment we have. See what he thinks and ask him how he used it. It takes a bit of practise but Oooooheeee is it ever worth it! Don't forget we're here for YOU too okay? Helen |
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Title: Re: Scared for my Son ! Post by mardiganseraph on Nov 30th, 2006, 11:45am You should be able to call around the different clinics and ask what the general cost is for treatment. I have an uncle that shares the same "hell" as the rest of us sufferers. He actually told me about this site and it has helped me to cope. But, anyways, back to the point; his doctor took him on as a free case in order to learn more about the causes and other what-nots of why we get these "Hounds of Hell" that chew into our skulls from the eyeball and back of the neck. I spoke to him last night and he informed me that his doctor was trying to develop a new medication to abort and possibly even prevent these cursed things. I will keep you and everyone else updated as soon as I get the word. Marcus |
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Title: Re: Scared for my Son ! Post by thebbz on Nov 30th, 2006, 9:06pm Quote:
Oh I just loved this. Your on my buddy list. :D read the stuff on the left first. Check out the supporters section. Get him on here, and remember CH will not kill ya. 1) at first sign of HA..make strong coffee. 2) get out of the way and standby for further instructions. 3)Make sure he is diagnosed by a neurologist The rest is his. 35 and living with Mom? Moms rock. You are doing all you can already and you should feel good about that. all the best jb |
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