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...

Hi Lucy.
I'm not up speed on Botox, but a few things you can, is avoid
all processed foods containing Nitrates, these are known CH
triggers, also chocolate. Also avoid alcohol when in episode
beer, red wine, are main triggers. Have you tried Melatonin
you can buy it over the counter at your local drug store. It has
a good record for getting through the night without REM wake
up call. Also checkout the vitamin D3 regime on this site it's a
must for CH sufferes. Hope these tips will be of some help to
you.                                                                                       

Hoppy.
trigger

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.

---

Get welders o2, works just the same and without the insurance company red tape ;)

-Gregg in Las Vegas

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.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - lots to read but you can read all about it.

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

Mike,  You mentioned organic solvents and got my attention. I've worked with them my whole working career and it's easy to be careless, they go through skin quite nicely but I never even thought they might be a trigger. Anyplace on this site I might research?

Thanks,   Sean

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.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE"

Two starting points there...

Thanks for that super fast response.   I can't avoid them unfortunately-- In your neck of the woods I think I called a panel beater but I certainly can be more diligent about wearing gloves. I'll check those out.
    Thanks again,            Sean
                

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.

Low risk for me on breathing the stuff cause I'm not in the paint department but definitely can have skin exposure. We unfortunately even recycle thinners that contain isocyanates, truly nasty stuff.  These are then used for cleaning purposes and one can get skin exposure then. Fairly low volatility compared to the old lacquers we used to use but still vapors are present and organic  masks are used when ever we're around fumes. It's the skin thing I'll be more careful with and try to see if there's a connection with my Ch.  Still hoping D3 is going to work cause the hot days of summer are coming-- fishing, boating and maybe a drink or two or three.

                               Sean