So the ch hit pretty bad a couple of weeks ago, and I had been shadowing for about a month before that.

I immediately went out and got some Oxygen since it has worked so well in the past.  I have been getting hit in the evening now, sometimes all during the night.

When I wake up with an oncoming ch I immediately put on the oxygen mask.  It takes a couple of minutes but I do get relief.  I wait for a couple minutes after feeling the ch go away then I take the mask off and go back to sleep.  This has worked in the past, but now it's different.  Now I follow that routine and all seems well except that I consistently wake up only a half-an-hour later with another oncoming ch!  What the heck is going on?  Has anyone else experienced this?  Am I not getting enough Oxygen?  Am I not leaving it on long enough?  This was my only comfort in this hellish experience and now I can't even rely on that.

Another thing is I can be pain free all day and into the evening but as soon as I lay my head on my pillow I can feel a ch coming on.  It there any sort of evidence to say that the pressure put on my head by the pillow would trigger a ch?  I can't go to bed cause I know it will start hurting!  I sit on my couch almost the entire night trying not to put any pressure on my head!  I need help!  I NEED SLEEP!!!!!!

If anyone can help please do.  Sorry for the rambling, I am writing this on literally 30 minutes of sleep!

Thanks...

Having CH change on you is a common thing, whether it is 02 or meds, left side to right side, night hits versus daytime, etc.

  How high does your regulator go up to?  Might want to think about getting a regulator that goes to 25 or 45 LPM.  Keeping it on for a longer period of time afterwards may help also. 

Pressure of laying your head on a pillow isn't a trigger that I have EVER heard of.  More likely it's because you're relaxing as you lay down.

Are you on a preventative?  If so which one and what is the dosage?  If it doesn't seem to be helping, adjusting the dosage higher could be what is needed.

Linda

I am very similar in that there are many times that as soon as lay down a CH is incoming so you are not alone.

The O2 works for me but seems to reappear within an hour.  So I am curious as to what responses you get on this topic.  In fairness I had been using the O2 incorrectly until I got some advice here and now use it correctly to abort or alleviate.

Good luck.  I have tried sleeping in a recliner but not much help there either.  Wishing you some PF time.

Hi Mammoth,
have you tried Melatonin 10-15mg before bed can help
avoid those night attacks.You can buy it over the counter
at your local pharmacy.

Hoppy.

When I was getting hit, I found that my sleeping in a recliner, which meant that I wasn't all flat in bed, would sometimes reduce my hits by one or so.

Now I do it for my ageing back of course.

Charlie

Melatonin!!! I take 10mg (or more depending on how bad I'm getting hit) before bedtime (and have for years). The night hits very rarely hit.

But it takes a little while to get in your system so don't say it doesn't work till you give it a week or so. My neuro recommends it highly.

I'm chronic and right now I'm in a high cycle so I'm getting hit regularly (thank goodness for O2) but not getting night hits.

One other thing I've found over the years.. When you wake up - GET UP.. do not lay there and try to go back to sleep - I've found that you WILL get hit if you do.

And see your neuro about a preventative.

:-*

Thanks all!  I have not tried the Melatonin but I will starting today. 

I don't react well to Melatonin, although I recommend it highly for those who can use it. 

I would echo Linda and Charlie.  A higher flow rate, for a little bit longer, and sleeping in a recliner to keep from lying flat helps.  You are finding that by sleeping on your couch, but it is not the head pressure that is causing it.  Relaxing and lying down are two things that will set mine off, and I'm chronic.

Jerry

In my experience, using very high flow O2 therapy will reduce the "immediate re-occurrence" CH's dramatically, compared to gently sucking down 15-25 lpm.  If I breath O2 at a leisurely 25LPM, it can help the attack, but they come back in 35-60 minutes like clockwork.  If I REALLY work hard to breathe deep and fast to suck pure O2 at 45 to 60 lpm,  that periodicity gradually stretches out longer and longer.

Oxygen is a monstrously effective abortive treatment for most CH sufferers - it kills the killers. But it's not a long term preventative treatment to avoid having more attacks. We are all different, and I'm a HUGE advocate of O2 therapy, but it's not going to keep the next one, and the next one and the next one - from hitting you!

After 14 years of being chronic, it is my not so humble opinion that O2 is the BEST way of keeping the beast at bay long enough to do something about it!

Marc