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Title: Hello from Guitar Bill... Post by GuitarBill on Apr 12th, 2006, 1:44am I just wanted to chime in and say it is absolutely awesome there is a website AND forum dedicated to this curse. I have been headache free for 5 years and now the pain is back...stronger than ever. I am currently on Verapamil which has worked for many of us before, however, I had to up my dose from 100 to 300 mgs. And still I'm in agony. I have no oxygen due to my musician's budget (for now anyway?) so I just suffer through each episode with my heart beating out of my chest. After each show it's unbearable riding on the tourbus trying to sleep when I know it's hopeless. And it's worse even when at home. I just learned from this site about Kudzu which I never have heard before. Will be trying that soon, and hopefully, in conjunction with the Verapamil, will end my hell. Thanks for all the new support ...and you are all in my prayers for a pain free life! |
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Title: Re: Hello from Guitar Bill... Post by AussieBrian on Apr 12th, 2006, 4:31am G'day Bill. The bad news is that you had to come looking for us in the first place. The good news is that there are ways around the red tape and expence when it comes to getting O2. I know the system here in Oz but if you don't mind waiting just a little some of our sleepy-headed American friends will be around to put you right. Sorry you're hurting, mate, but you're in the place to find all the good information. Keep music live, Brian down under. |
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Title: Re: Hello from Guitar Bill... Post by marlinsfan on Apr 12th, 2006, 7:33am Welcome, Bill. I don't take verap, but I've read here that people go on much higher doses. I think I've seen up to 480mg, but they'll jump in soon enough. Here's a doc that has some other alternatives for ya! http://www.brightok.net/~mnjday/chtherapy.pdf By the way, not sure if you've figured it out yet, but alcohol is a trigger for many of us. PF wishes. |
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Title: Re: Hello from Guitar Bill... Post by Garys_Girl on Apr 12th, 2006, 9:38am We're new to the site, but hubby has found that the Kudzu really helps reduce the number, frequency and length of attacks (for him). But it also leaves him with shadows all day. He says it's like going from frequent, fairly extended, but very sharp and defined attacks to a fuzzy all day pain with 2 or 3 spikes that last 20 minutes to half an hour. For him, without other meds, this is a preferred alternative. However, I've just read that for some Taurine supplements kill the shadows. I also read that for one person, a teaspon and a half of ginger powder mixed into a glass of water (and add water and finish the powder after the first glass) works for them. A review of many herbal or other supplements is available here: http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Ginger Good luck and wishing you pain free playing! Laurie |
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Title: Re: Hello from Guitar Bill... Post by alchemy on Apr 12th, 2006, 10:31am hey Bill, on the verap I'm up to 960 a day and they want to go higher. goodluck and stay in touch. jim |
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Title: Re: Hello from Guitar Bill... Post by NotH20 on Apr 12th, 2006, 1:22pm Hey Bill - glad you found your new CH family! :) I too am on 960 mgs of Verap a day - not sure if it's working or not - but so goes life. You may want to check on Prednisone - not too expensive and a quick round of that may be enough to up the Verap and get it working in your system. I'm not sure about the alternative O2 - but Jonny will come around soon I'm sure. Check the medications on the left that have worked - there may be something new there that you haven't tried that is within your budget. Good luck and keep us posted, Mia |
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Title: Re: Hello from Guitar Bill... Post by Richr8 on Apr 12th, 2006, 3:58pm Hi Bill and welcome. The Verap and prednisone usually break my cycle, but I will be looking at an alternative approach for next year. Although the Pred does work, there are far too many disastrous side effects for long term use. Let me know how the Kudzu works for you. Also, figure out a way to get yourself some O2. It is not real expensive if you go the comercial route through a welding supply house and there are regs and stuff available from folks here and on E-bay. |
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Title: Re: Hello from Guitar Bill... Post by GuitarBill on Apr 13th, 2006, 12:08am Thanks everyone for the warm welcome!!! AND for the great advice....I haven't even heard of Kudzu until I jumped on here. Wow, Alchemy your up to 960m? Geez!!! I get lightheaded easily on only 300!!! How do you feel? I understand dizziness is a common side effect for Verap. Was on Prednisone--bad, bad idea. The worst was Dexamethizone...it caused a life threatening allergic reaction!!! Besides Lithium (which worked for a week) and the Verapamil, nothing has worked better. Have tried Ergomar (a pill you dissolve under the tongue) a case of beer would have made me feel better :P Will be visiting these boards often, that's for sure!!! |
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Title: Re: Hello from Guitar Bill... Post by Guiseppi on Apr 13th, 2006, 1:51pm Tried that dissolving pill under the tongue thing too, worked about as well as burning incense and chanting! (I'm not knocking anyone who burns incense and chants ;;D) You said you tried lithium but it only worked for a week. For oodles of years now it's been my primary prevent med when on cycle, about 1200 mg a day. It takes about 10 days for it to start working for me, might consider trying that road again. Here's hoping you find SOMETHING that works, these things suck!!!! Guiseppi |
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