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Title: hello, new and trying to figure this out! Post by bicounette on Nov 17th, 2004, 6:09am Hello! I am new here and I am trying to figure out how to post and how to respond to posts. My boyfriend suffers and I am searching the net to learn about clusters and found this site! now if I could just figure it out! |
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Title: Re: hello, new and trying to figure this out! Post by bicounette on Nov 17th, 2004, 6:34am okay, here goes! I'm just going to jump in, I hope I dont make too many mistaks that will irritate others. I would like some advice as to what I can do to help my BF when he is suffering? I mean am I supposed to just watch him suffer? I feel so helpless, it's horrible not being able to do something. What are some things that help? He doesnt' want me to massage his neck, he just ties an ice pack to his forehead and ties it so tightly it looks like his skull is going to exlode. Then he pounds his fist against his head. He can't sit still. It looks like what he does will only aggravate the pain, am I wrong? Should he lie down in the dark? Please help! any suggestions? I appreciate it. BTW he has been diagnosed and takes prednisone, but he is not religious with it. He takes it when the pain starts, then he doesnt take it again until pain starts again. I thought he was supposed to take it religiusly for a while then taper off? sorry this is so long and thanks! |
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Title: Re: hello, new and trying to figure this out! Post by LeLimey on Nov 17th, 2004, 7:00am Hello and welcome! Its nice to meet you! There is a load of information on here which has been a great help to me, read read and read a bit more, you'll learn alot and work out things that will work best for your boyfriend. Don't feel rejected by his not wanting to be massaged, I think I'd kill my husband if he tried to do that when I'm getting "hit" ! What you say about his behaviour is classic, you just can't sit still with this sort of pain, I know I have tried to gouge my eye out before and literally banged my head on things too. It may look like it will aggravate the pain, but in some perverse way it "helps".. for me at least, at least I'm doing something and (I hope this makes sense!) I'm trying to hit the pain and hurt the pain.. I'm not trying to hurt me, it feels like I'm trying to scare it away.. but if I keep talking rubbish like this I'll just scare you away! You are right in thinking pred is a taper for CH. It is quite a nasty drug and shouldn't be taken lightly. I have never taken it for CH, although I have had it and it does have to be tapered. My understanding of it for CH is to start on a high dose and reduce it daily under doctors instructions in order to abort a cycle. I don't believe it is used as a pain-killer directly but I'm sure someone else here will give you better advice on that. My drugs of choice are oxygen and imigran injections. O2 is fantastic, I can't praise it highly enough and its side effect free! The imigran injections are very quick too and that relief is just.. indescribable! For myself I would just like to say a HUGE thank you for coming here and looking for ways in which to help your boyfriend. It is so lovely to see people caring enough to really support their loved ones :) You are a lovely lady! Please come back and let us know how he is getting on - and how you are too! Regards Helen |
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Title: Re: hello, new and trying to figure this out! Post by Svenn on Nov 17th, 2004, 7:08am Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for at least 15 minutes on a nonbreathermask or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg every 3dh day Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily. after 1 week on Verap retard 120mgX1 and still no hits i can quit that to There are a lot of good meds out there but this is just my "coctail" The very best from Svenn |
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Title: Re: hello, new and trying to figure this out! Post by bicounette on Nov 17th, 2004, 7:13am hello and thanks for replying! I was afraid the time difference would be a problem and it's nice to know that someone knows about this. Especially here, people have no idea what these cluster headaches are. I am surprised that my bf actually found a doctor here who found out what the problem was after my bf tried everything from homeopathy to other things for the pain. I have been doing a lot of reading lately on the net but nowhere does it talk about what people can do who are close to someone who is suffering. I have seen several mentions about avoiding smoking, alcohol, dairy, eggs and chocolate. Other sites say that foods or alcohol dont trigger an attack. Still trying to figure what is reliable info and what isn't. So all I can do is help him avoid those things and hope that it helps. I am scared because he is so scared that "they" will come back the way they used to be that he talks aout suicide. He tells me that he won't be ablte to take it again if they come back. He says that these are just the warnings and that they are going to come more frequently and for longer periods of time. I feel so helpless! thanks for replying btw! |
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Title: Re: hello, new and trying to figure this out! Post by Bob_Johnson on Nov 17th, 2004, 7:49am Go to this site and print out the material on treatment. This will help your doctor. WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options. If you can obtain them, I'd strongly suggest buying the first book because it's written by a doctor for doctors. If you can't afford it, then get the second book. It's not as good for use by a physician but it has good information. --------- MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....") HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended. |
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Title: Re: hello, new and trying to figure this out! Post by bicounette on Nov 17th, 2004, 8:43am Hi and thanks Bob for the info! i will check those books out here. Hopefully I can find them at Virgin cuz Amazon stuff doesn't always make it passed customs; they tend to "keep" things! thanks again! E. |
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