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Title: Assistance needed! Post by michael on Aug 19th, 2007, 1:25pm Although I've had CH for 40 years, I didn't know what they were untill about 9 years ago. At that time I was eventually given imigran injections, which took out a hit in about 7 minutes. I thought that was the wonder drug I'd been looking for but the frequency of headaches in a cycle grew and grew. I have been given o2 but only at 4 l/m. I have recently seen a neurologist that has worked out a regime of o2 at high rate + presedone + verap when my next cycle starts. Luckily my cycles come only every one and two years. My problem is that between cycles now I get almost daily headaches that start off very mild and build very, very slowly up to probably half way between a kip 3 and 4 and last for most of the day. An imigran radis 100mg tablet will abort in about 30mins and it will not return untill the next day. However, I somehow have the feeling that these tablets are feeding this and a break from them might just stop these headaches. The headaches come on at about 10 in the morning when I am at work so o2 is out of the question and tapers and verap seem a bit over the top(?). The tablets are an easy way out but they are now starting to concern me. By the way, redbull has no effect. |
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Title: Re: Assistance needed! Post by Linda_Howell on Aug 19th, 2007, 1:31pm What you're describing sounds like shadows to me, but could very well be something else entirely unrelated to CH. I'm very glad that your new neurologist got you a higher flow regulator than just 7 lpm though. |
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Title: Re: Assistance needed! Post by The mad viking on Aug 19th, 2007, 1:51pm The first "bell ringing"here is stressrelated.Have you checked that possibility out? Svenn |
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Title: Re: Assistance needed! Post by michael on Aug 19th, 2007, 2:06pm Yes, I am stressed these days but I don't know how I'd check that out. My thoughts on these headaches is that during a cycle the only really effective treatment I have been given up untill now has been the injections, and only since using them has the frequency during a cycle increased and only since then has these between cycle headaches built up. Also, the imigran tablets will abort these which tempts me to think they are related to the CH. i just feel now that they may be rebounds. I just want to get off the triptans but I dont know how. |
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Title: Re: Assistance needed! Post by andrewjb on Aug 19th, 2007, 2:35pm have you tried the water treatment, look on the left. it would also help wash the sumatriptan from you, awful stuff. andrew. :) |
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Title: Re: Assistance needed! Post by michael on Aug 19th, 2007, 2:45pm I'm going to give that a try Andrew. Thank you. |
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Title: Re: Assistance needed! Post by Jonny on Aug 19th, 2007, 2:49pm When I was taking Imitrex shots I got three times the headaches I would normally get, when I stopped taking the shots the HA's decreased. I now take Zomig nasal spray and there are no rebounds. Zomig comes in pill form also, ask your doc to try those. BTW: The Zomig NS works for me just as fast as an Imitrex injection. |
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Title: Re: Assistance needed! Post by southwalessunshine on Aug 19th, 2007, 4:14pm I relate to what you're saying. i too use Imitrex but only for the bad ones. i have the smaller HAs like yourself, pretty much all day long but the use of the triptans doesn't affect them in any way shape or form. However you could try laying off them to put your mind at rest? You def need 100% 02 at 15 lpm. I got my 1st lot of 02 a few days ago but just before I went to use it discovered I'd gotten 2 lpm. Needless to say the benefits of 02 are still evading me, but I hope you have some success. |
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Title: Re: Assistance needed! Post by Bob_Johnson on Aug 19th, 2007, 4:28pm At least two issues: 1. that a triptan aborts a headache is NOT a definitive sign that you are dealing with a CH; and, 2. for some people, headaches can be changed in pattern/frequency with multiple/high doses of Imitrex. You might consider trying olanzapine for the "lesser" attacks, saving the triptans for the big ones. http://www.plainboard.com/ch/chtherapy.pdf Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) |
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Title: Re: Assistance needed! Post by ClusterChris on Aug 19th, 2007, 7:13pm Jonny, I was just reading about your switch from trex to zomig. Most of the time when I'm in cycle my nose is stuffed like a pig. Just curious as to what you do in this situation. I would love to get off the trex someday but its the onlyreliable option for me at the moment. Chris |
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Title: Re: Assistance needed! Post by Grandma_Sweet_Boy on Aug 19th, 2007, 7:16pm Chris - have you tried Zomig? I use the rapi-melt one and it works for me. Just pop it under your tongue. I've not tried any of the nasal sprays but those who do use them think they're great. Carol |
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Title: Re: Assistance needed! Post by ClusterChris on Aug 19th, 2007, 8:17pm Yes Carol, I have tried both the pill form and the nasal spray, The pill took too long to work and my nose was always to stuffy to get a good shot of the nasal spray, most of it just ran right out of my nose. I see alot of people posting about trex and rebounds and I am starting to wonder if that is happening with me(but damn it works so good) I get hit pretty much every 4 hours so I don't know. I know one day I will log on to the site and there will be a post about a cure that will be true! Sooner then later I hope! :-/ Chris |
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Title: Re: Assistance needed! Post by Lenny on Aug 19th, 2007, 9:01pm [quote author=ClusterChris link=board=ch I see alot of people posting about trex and rebounds and I am starting to wonder if that is happening with me(but damn it works so good) I get hit pretty much every 4 hours so I don't know. :-/ Chris [/quote] I remember starting a post about rebounds and trex appr.5 years ago or so (boy did i get it from some of the members) at the time there was nothing on it"rebounds"...I am the same as you,it is the only thing that helps me with the beast...Here is what i do to help with the rebounds,i will go 3 to 4 days and deal with the beast with no trex(when i am using alot),that seems to help everytime that i do that...I have been doing trex since the (early 90's if i recall correctley)prior to learning the "tip"i have done 7 full "6" on several days... Good luck and PFDAN to all.....Lenny |
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Title: Re: Assistance needed! Post by Marc on Aug 19th, 2007, 10:22pm I'll weigh in here too. My experience is just like Jonny's (and others) where it always worked, but I got hit far more often. I can't explain it, but I am positive that it works that way for me. I won't use it now. Zomig NS is my current miracle drug, IF I jump on it at the first sign. Add O2 to the mix and I beat 99% of them. I do remember when Lenny brought it up years ago, and I don't know if they are actual rebounds - but the fact remains........ BTW - Hi Lenny! Marc |
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Title: Re: Assistance needed! Post by ClusterChris on Aug 19th, 2007, 11:21pm Maybe I'll ask the doc for a ns again to try a few times when i'm at home with the o2. Thanks for the info. |
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Title: Re: Assistance needed! Post by Lenny on Aug 20th, 2007, 2:24am Hi Marc, Its been a long time,how are you ? Hope all is well with you and yours...Hopefully your head is doing well with many PFDAN coming your way.............Lenny |
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Title: Re: Assistance needed! Update Post by michael on Aug 25th, 2007, 1:39pm Update! Doc has put me on Pizotifen 0.5mg tablets 3 times a day to try and break the shadowing headaches. Leaflet with the tablets says they are used to prevent migraine type headaches, including cluster headaches. Mike |
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Title: Re: Assistance needed! Post by Rosybabe on Aug 25th, 2007, 1:50pm it is a preventative..also called Sandomigran... here is some info on it: http://chealth.canoe.ca/drug_info_details.asp?brand_name_id=981&rot=4 |
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