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Title: another newbie... Post by Heidi_B on Nov 18th, 2002, 3:23pm Hey Everyone, I've just recently found this site, and have appreciated all the info. I have just recently been "diagnosed" with CH's, but I can remember being in high school and my teacher asking if something was wrong because my right eye and nose was watering so badly from the headache I was having...now i'm 25. Until this past month I hadn't had a bad round of headaches for about 18 months, and then all of the sudden they were back...every friday until monday, or the doctors office, or the ER. I'm currently taking a 2 week course of Prednisone-10 mg (this kicked the headache right away, but i can't take that forever I'm told), 12 mg of Toprol (??), and 400mg of Riboflavin (??)....Any of you tried these?!??! I seem to be allergic to the triptans, Zomig and Imitrex, I've tried them both...lucky me!! Thanks for the great site!! Heidi |
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Title: Re: another newbie... Post by echo on Nov 18th, 2002, 3:29pm Welcome to the family Heidi, Sorry that you needed to search us out, and that your are a confirmed card carrying CH member. Hope your meds work quicky. |
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Title: Re: another newbie... Post by domm on Nov 18th, 2002, 4:25pm Heidi - welcome to the board. There are other abortives that work well - Oxygen is the one I would recommend - cheap and no side effects. Make sure you read up on how to use it properly tho, cuz if you don't, you won't have success with it. Also, there are preventatives that can hold the beast at bay. Most start taking Verapamil while on the prednisone. It takes 5 to 7 days to kick in, then as you come off the pred, the verap is there. Click your way thru the site, tons of great info here and on the OUCH site. Read, read, read. good luck and I hope you find the right combo for you domm |
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Title: Re: another newbie... Post by Lori on Nov 19th, 2002, 12:21am Hi Hiedi, Glad you did find us here. There is so much wonderful info that I'm sure you will find it educational to say the least. I hope your meds kick the pain for you. Good suggestions in the previous posts, read as much as you can here, especially on the meds so you can be informed. Good luck to you and let us know how you are. |
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Title: Re: another newbie... Post by Charlie on Nov 19th, 2002, 4:58am Welcome to the fold Heidi. If you stick around, contribute and explore this place, you will find something to make things easier. There are a lot of good ideas, some bad ideas and lots of nonsense. Don't pay too much to some of our rants. It's mostly in fun. Glad you found us and here the thing I never get tired of posting: 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: another newbie... Post by RevDeFord on Nov 19th, 2002, 6:18am Welcome Heidi! Good to have you here. Can I ask you a question? How do you know you are allergic to Imitrex? What happens when you take it. I don't know if you are aware of it but there are 3 types of Imitrex - pill, nasal, injection. The pill hardly works for anyone but the nasal is somewhat effective. If you are wierding out taking one, the other may be an alternative. There are those that have had luck with Maxalt as an abortive, although it didn't work for me and I hated the taste. But the oxygen is definately your best bet. |
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Title: Re: another newbie... Post by Heidi_B on Nov 19th, 2002, 1:12pm When I took the Imitrex (100 mg pill) my neck, throat, and upper body got really tight, and i'm not sure if it would've gotten worse, but I ended up going to the doctor right away...and that's who said it COULD be an allergic reaction. The same thing happend with the Zomig too... I have also tried the Oxygen which didn't do anything for the headahce, but the doctor mentioned they didn't have the correct mask, so i'll maybe have to give it another try... Thanks everyone for all the advice...the circulatory thing sounds interesting... |
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Title: Re: another newbie... Post by RevDeFord on Nov 19th, 2002, 1:56pm Heidi, that reaction to imitrex is definately interesting. Have you tried Maxalt at all? |
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Title: Re: another newbie... Post by Heidi_B on Nov 19th, 2002, 2:07pm No, I haven't tried that one. It's just been in the last month that I've actually started to be treated for CH's...supposedly when I'm done with the prednisone the Toprol (??) is supposed to kick in...and hopefully keep the headaches away. I haven't read of anyone taking Toprol for CH's though...I guess if I find that it didn't help I'll definately mention the Maxalt. What is it exactly? I'm trying to stay away from scary stuff : ) |
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Title: Re: another newbie... Post by RevDeFord on Nov 19th, 2002, 2:12pm It is this little pill you put under your tounge and it disolves. It is nasty tasting, but some folk have had good luck with it. :o |
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Title: Re: another newbie... Post by Bob P on Nov 19th, 2002, 3:13pm Toprol - beta blocker - good for migraines - not so good for CH. If it doesn't work, switch to a calcium channel blocker. |
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Title: Re: another newbie... Post by Heidi_B on Nov 19th, 2002, 4:04pm Great, another doctor that doesn't know what he's prescribing...I had heard of calcium and beta blockers, but didn't know they were for different things... |
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Title: Re: another newbie... Post by catlind on Nov 19th, 2002, 4:16pm Welcome to the board Heidi. If you can't take Immitrex and Zomig, (I can't either) there's a relatively new triptan available that doesn't have as many side effects....Frova, there are a few folks on the board that have had good luck with it. O2 with a non-rebreather mask at 8-12lpm MINIMUM. It's hard to get the docs to understand the flow rate and mask importance. Lots of folks here that have loads of info for meds, O2, and other means of coping when your meds and mind fail you ;) Cat |
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Title: Re: another newbie... Post by Drk^Angel on Nov 20th, 2002, 3:36pm Welcome to the board! Sorry that the beast is beatin' your cranium into a pulp with a hot high tension line. Good luck! PFDAN.................................. Drk^Angel |
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Title: Re: another newbie... Post by Mark C on Nov 20th, 2002, 4:51pm Welcome to the board. My experience with Imitrex has been very good with the Injection. However if I take one 50mg pill I feel quite ill for a couple of hours. I am not sure why. Zomig also seems to be quite powerful but has proven effective in aborting most of my HA. Maxalt on the other hand has had the least amount of side effects and been quite successful at aborting my CH. Good luck, Mark |
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