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Not following the pattern? (Read 3819 times)

southernbelle

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Not following the pattern?
Jul 3^rd, 2013 at 11:16pm

Hi everyone. My boyfriend was diagnosed with cluster headaches last July and his cycle lasted through October. His most recent cycle started at the end of February, and it's still going on. The attacks happen once a day at various times....morning, afternoon or evening. Based on what I've read so far, cycles usually don't last more than 3 or 4 months, and the attacks are usually at night. Has anyone else experienced a cycle that lasted this long?

He is in so much pain:(. He has a heart condition and can't take a lot of the typical therapies I've seen on this site. Not to mention, he can't get oxygen because Medicare won't pay for it. I don't think he's found the right doctor who will really work with him on managing this awful pain. Right now, he takes topomax and melatonin. His GP prescribed imatrex in capsule form but it didn't work:(. Any advice for relief is greatly appreciated!

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Guiseppi

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Re: Not following the pattern?
Reply #1 - Jul 4^th, 2013 at 4:09pm

Follow this link to the medications section of this board and read the post

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for him even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Please for his sake give it a look see.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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PR921

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Re: Not following the pattern?
Reply #2 - Jul 16^th, 2013 at 4:27pm

Definitely have him try the vitamin regimen. My husband started on it July1st and had immediate relief as far as the severity of the headaches. He has continued to have the headaches, but the oxygen gets rid of them quickly and the intensity of pain is minimal. I'm happy to report that he didn't have one at all last night, so maybe this is going to be the end of this cluster period.

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southernbelle CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Not following the pattern? Reply #3 - Jul 17^th, 2013 at 6:16pm He's been on that regimen for almost 2 weeks, but no relief yet:(
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Not following the pattern? Reply #4 - Jul 17^th, 2013 at 7:12pm Hi SB, Has he had his 25 (OH) D serum concentration blood test? It needs to be around the 80 ng/ml mark,if not get back to us for further information. Hoppy.
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southernbelle CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Not following the pattern? Reply #5 - Jul 18^th, 2013 at 10:12am Just curious, but what does the blood test have to do with it?
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Not following the pattern? Reply #6 - Jul 18^th, 2013 at 4:27pm Hi SB, For the D3 Regime to be effective you need a 25 (OH) D serum concentration 80 ng/ml 203.5 nmol/l. You need a blood test to see where your vitamin D level is at. Most folk findafter the test there vitamin D level is way to low. Hoppy.
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