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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Need Advice

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Need Advice (Read 1144 times)

emmettk90 CH.com Newbie Offline I Love CH.com! Posts: 11 Northern Ireland Gender:	Need Advice Jul 6^th, 2012 at 5:24pm I have been suffering with cluster headaches for 5 and a half years now, and I am chronic so I dont get any relief. My specialist now wants me to start a treatment where I get a steroid injection in my neck every 3-4 weeks. I am just asking for peoples experience of this and if it works.
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Need Advice Reply #1 - Jul 6^th, 2012 at 5:41pm Exactly what did he tell you when he suggested this? Is talking about a Prednisone taper?? I've never even heard of this treatment and can't think for the life of me why he'd give you a shot in the neck.
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Katherinecm CH.com Sponsor Offline Posts: 432 Des Moines, IA, USA Gender:	Re: Need Advice Reply #2 - Jul 6^th, 2012 at 6:36pm My guess is some sort of nerve block? Is that what you mean?
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emmettk90 CH.com Newbie Offline I Love CH.com! Posts: 11 Northern Ireland Gender:	Re: Need Advice Reply #3 - Jul 7^th, 2012 at 1:57am I was kind of out of it when I saw but Katherine is correct it is supposed to temp burn the nerve.
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Guiseppi

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Re: Need Advice
Reply #4 - Jul 7^th, 2012 at 9:33am

Several have posted about nerve blocks with varying degrees of temporary success. What else have you tried? Are you working with a headache specialist neuro? Have you tried oxygen as an abortive?

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Let us know what you've tried including dosing, we might be able to throw some suggestions at you to take back to your doc.

Joe

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emmettk90 CH.com Newbie Offline I Love CH.com! Posts: 11 Northern Ireland Gender:	Re: Need Advice Reply #5 - Jul 8^th, 2012 at 3:42pm Sorry I should have said what I have tried. I have tried Verapamil and Topiramite on low dosage, and I am currently on 1200mgs Lithium a day along with 100mgs of tramodol and Oxygen when required.
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Joshua

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Re: Need Advice
Reply #6 - Jul 8^th, 2012 at 4:46pm

"I have tried Verapamil and Topiramite on low dosage"
.
I tried nerve block 2 years ago with little success. I was PF for about 1 day during a vicious cycle, but it did little else besides block 1 day's woth of headaches.
.
Has your dr. considered a higher dose of verapamil before trying the topirmate or lithium? I wasn't clear from your response if you've tried both on low doses or just topiramate. Verap is usually the first line of defese for CH. (from my personal experience and experience on these boards.)
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I am also chronic, and have been under control for the past 2 years with nothing more than 480mg - 600mg of verap a day.
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Currently I'm finding that isn't working, but it has for a long time, and so now I'm trying D3 (which *IS* working I believe.)
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Abortives : 1st- oxygen - 2nd Imitrex injection
.

« Last Edit: Jul 8^th, 2012 at 4:56pm by Joshua »

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Callico

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Re: Need Advice
Reply #7 - Jul 9^th, 2012 at 12:06am

you didn't mention what flow rate on O2 nor what kind of mask. That makes a big difference. You need a minimum of 15 lpm, but for best relief if you are like most of us 25-40 lpm will make a big difference. also, if you are not using a non-rebreather mask you are wasting your time. I HIGHLY recommend the O2ptimask available through the CH.com store on the left of this screen.

You also didn't mention what level or type of Verap you used. I was as high as 960 mg a day at one point, but had to drop it back to 780. I eventually got off of it and went to using Kudzu instead. I got the same results, but without the nasty side-effects I was getting from the Verap/Lithium cocktail I was on.

Go the the Meds/Treatments board and check out the thread "123 days PF and I think I know why". It has worked very well for quite a few people. Helpful for me, but not total yet.

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. You may or may not be able to go this route. Some of us cannot due to personal circumstances, but of all the options I think this one has the best promise. At least educate yourself about it.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: Need Advice Reply #8 - Jul 9^th, 2012 at 9:28pm My doctor offer me a pred shot. Just so happened to be in the neck. I said no. I told him how i was using the clusterbuster method and he said i was being silly. I told him " your the one holding a 4 inch needle and your calling me silly". I have not been back since. Its been over 4 years now. Coach Bill
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