It's been quite a while since I've been in this forum.  I normally start a cycle around November which I did this last year but the darn cycle just keeps going on and on - normally they last 6 to 8 wks. 

I will say the headaches are mild compared to what I was having but they always come during the REM sleep period.  I have tried many meds - none work - and the only pill that works for me is the dreaded Prednisone.  I need to take at least 30 mgs a day and of course I have the typical moon face and other chunks of newly formed 'flesh' on my body which was expected.  My doctor continues to tell me to get off and when I do start to wean the headaches intensify so back on the darn things I go.  It is a vicious cycle.  I do know when I am under a great deal of stress I will get a horrific headache so I know that is one of my triggers.  I also experienced the CH after eating Chinese food loaded with MSG.. Watched that pattern emerge so now it's avoided. 

I have recently heard something about botox for CH .. Anyone know anything positive about this? 

I don't know how much longer I can live like this ... thanks for listening and please offer any advice that might help .. As for oxygen - not an option.  Cannot afford it and medicare will not cover it for CH...

It's always helpful if you would give us the specific meds and doses and duration of use which you say don't work.

Print the PDF file, below, and share with you doc.

Hi LucyBee

Be careful of long term use of prednisione as it can do a lot of damage to your body when used for anything beyond short term use. For CH use it is normally limited to about 10 days with a taper dose.

When you say you've tried many meds with none of them working, what meds are they and at what doses? Often when people say things don't work it can be that the dose tried wasn't high enough. For example with verapamil it is normally used for blood pressure control up to about 240mg a day, but for CH many need 360-480mg and some over 1000mg. So if you'd been using it at say 120mg it may appear to not work when it just wasn't at a high enough dose to work.

It is common when people wean off prednisione that they return with a vengence as you experience too.

Similarly stress is a common trigger for CH, although it varies between increasing and decreasing stress, so it is very much individual as to how it affects people.

Other food like triggers that can affect some people include alcohol, MSG, nitrates plus organic solvents (although not found in food).

Botox has been trialed for migraines and for that it can make a difference for some people, but it doesn't seem to be too effective for CH.

Have you tried vitamin D3? This has been something that has over the last few years made a huge impact here with over 80% of people going pain free.

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Whilst medical oxygen might be too expensive, have you looked at using welding oxygen? Lots here use it to good effect.

I've seen a few people here mention that they think that they are a trigger for them. I know that they have triggered CHs and migraines for me. I normally stay well clear of them, but sometimes they are used when you don't quite expect them.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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Two starting points there...

Try also keeping a diary, noting what chemicals were used and your headache symptoms. You may identify a link.

And also see about if there is suitable breathing protection that might help if the solvents are being evapourated.