I am so thankful to have found this message board. I am a long time cluster sufferer and after a long period of remission I find myself right back where I started years ago. I am on neurontin and topamax as
preventatives (have been for over 10 years). I was recently diagnosed with fibromyalgia as well. About 2 weeks ago the headaches started again. The first woke me from my sleep, which mind you sleep is rare for me as it is. They have progressively gotten worse and have 4 to 6 a day..just like clockwork. My neurologist is out of the country and I cannot see him until Nov 4th and I am at the point I am going insane. Right noe I am trying to catch them before they start with 2 barbituates and 4 to 6 motrin. They are going to kill my insides. Not to mention I am completely worn out! Those that have never suffered a headach like this cannot imagine how 15 to 20 minutes of severe pain takes every bit of energy you have. I need suggestions to get me thru to the 4th. Please help!!

Have you ever been prescribed oxygen as an abortive?? ? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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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 you 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

This is something you could start today.

For the night time hits, get some melatonin, an OTC sleep aid, start with 9 mg about 30 minutes before bed time. Many can avoid the night time hits with this. Some go as high as 18 mg a night to get relief.

For the daytime hits, get some energy drinks, red bull, rock star, any containing the combo of caffeine and taurine. Chugged at the first sign of an attack many can abort or at least really reduce a hit.

Start reading everything on this board, your current regimen shows a doctor who isn't well versed in CH, Is he a headache specialist neuro? We've found that's the best bet at getting decent treatment. Stick around, glad you found us.

Joe

Thanks so much Joe! I will definitely give this treatment a try. He di
oes specialize in headaches however I started seeing him during my remission period so we couldn't specifically define them. Now that I am in the middle of a cycle he will know exactly whats going on.

Hi KatM   [smiley=wave.gif]
Guiseppi beat me to it. I have been taking the D3 regime for almost 3 months now. I have gone into a cycle but no more than 2 or 3 on the kip scale (tab on the left of your screen). I was in remission when I started taking it so don't know how long I would have taken to respond, but I do know my last cycle was short and tolerable so I am convinced it's working.   :D   I urge you to give it a try. You have absolutely nothing to lose. But it is important that you get your blood test done so you know when you have reached the right level. Everything you need can be bought cheaply, especially if you shop around on line.
Good luck with it. Maz.

1. I'm surprised that your doc hasn't given you an abortive to take in case an attack slips by the preventives.

2. Did he not arrange for another doc to cover for him while he is away?  Assume you have asked his office what are you options in such a situation.

I missed that Bob, excellent point. Does your neuro have a partner/associate you could slip I to see to get you by?

Joe