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Are they coming to an end?


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Kia ora, I'm a long term sufferer and have had cluster headaches for about 17 years now. In the last couple of years the gaps between seasons has lengthened, the intensity has partly decreased (Still insufferable) and the epicentre has moved from behind my right eye to a point on top of the skull (though my eye still hurts and closes and is sensitive to light). I read that typically sufferers have the headaches for about 20 years and I wondered what the signs of them receding were and if that is what is happening to me. I thought they had gone entirely but more than a year after the last season they have returned. When I first had them the seasons were far more frequent. I'm also interested in your remedies / coping mechanisms. I havenever tried any medication and my doctors have never been any help. The only thing that helps sooth them for me is a very hot shower with the water on the affected points with massage (Temples, skull, eye socket etc.). Has anyone else found this helpful? Any thoughts welcome.

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The bad news is that for most people things don't get better on their own with age/time. For some they do -- maybe you'll be one of them.

The good news is, holy cow, gosh, there are plenty of things that will help you.  Most people would put oxygen #1 on that list, as an abortive for your attacks.  Pharma meds such as verapamil as a preventive and injectable sumatriptan as a backup abortive are often effective.  You really need to become familiar with oxygen and meds. In the ClusterBuster Files section of this board, you could look over "Bob's Big Pocket Guide . . ."  Find the places that seem most relevant to you and start there.  For strictly pharma stuff, google [Goadsby treatment of cluster headache] for a clear discussion.

A list of recommended doctors appears as the first post at the top of this board ("General Board").  A good doctor makes a difference.  Many docs won't/don't even prescribe oxygen, which is pretty close to malpractice given that all medical references list it as the #1 abortive. (You can set up your own oxygen system using welding oxygen, as about 20% of people with CH do, but an O2 prescription is a nice thing to have.)

The vitamin D3 regimen that is described in that same ClusterBuster Files section has helped hundreds of people.  Give it some very serious consideration.

Busting is highly effective.  Read the numbered files in the CB Files section to learn more about that.

Try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack.  It can reduce the severity of attacks and sometimes even abort them.  Strong cup of coffee might work, but the energy shots are generally better.  Melatonin at night, starting at 9 mg and working up, helps many . . .

CH still sucks, but you could be feeling a whole lot better.


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  • 1 month later...

Hi Reverend,

I have also found heat to be most helpful in my situation. and the hot shower as you have mentioned in your post.. but at its worst, hopping in the shower 4-5 times a night was getting to be to much. I have been to all the doctors and tried all the remedies

So at night, I will place a large pot on the large burner of my stove, with just a very small amount of water in it, about a centimeter deep. I leave it off of course, and when I feel the headache coming, (Which for me is a very defined burning in my right sinus just under my eye and usually wakes me up) I can quickly get the water to a steam in just a minute or two.

I basically steam my face and side of my head / ear / temple neck etc. and also try to inhale the steam into my sinuses if it hasn't already closed off. If it has than mouth breathing it in seems to work just as well. I don't know why but the heat seems to slightly mask the pain also, the hotter the better, without burning myself obviously. but it seems the more heat I can tolerate the quicker the relief.

on many occasions I can stop the headache in just a few minutes before it gets to bad. and I have a great complexion. lol 

If I don't catch it in time, and it gets bad, then I abandon the steam and sit in the shower for fear of passing out on top of the stove. Although I have yet to pass out from the pain that does concern me. Anyways most of the time the steam does the trick.

My headaches are seasonal. Sometime around March through May for some reason. They start off in the evening just one a night a day or two apart, increasing in frequency, and  building up to a day, or two, or three, of all night episodes every hour or two apart, I may get 30 minutes to an hour of sleep in between during that time, and then they taper off the same way they started. , as they decrease in frequency at night I start to get them in the day time.

last night I just had one, and then one this afternoon . I am hoping I get a full nights sleep soon, will be the first time in months.

Honestly, I feel like one of the lucky ones here, as at least it seems like there is some relief on the horizon for me.. for awhile at least.  

I do wonder if steam is similar to oxygen therapy however, or maybe its just the heat by itself.


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