Hi All,

New to the board but long time sufferer.  I have been getting cluster headaches since about 18 years old (17 years now). The good news is the older I get, the more time in between cycles (now averages 18-24 months) where when I was 18 I would get them twice a year like clockwork.  Hope the trend continues!

Just got into oxygen therapy about two years ago and it has been a godsend.  Works quickly for me, no drugs, and doesn't make me feel like a zombie all day. Currently about a week into a cycle and there has been a pretty distinct change.  Every other time I have had a cycle, I have almost always had the headaches come in the morning, usually woke up with a cluster either coming, or pretty strong into it.  Sometimes I would get one during the day, but usually only when it was triggered (alcohol, very strong scents, any feeling of being hungry). 

This time around I seem to be getting them all times of the day or night, and much more frequent.  The oxygen works every time, but it seems the headache wants to come back if I fall back asleep or  a couple of hours later after taking oxygen.  This is quite the departure from how things have worked before, where it was fairly regular timing and obvious triggers.  Has this happened to anyone before?  Could this be a sign that the oxygen is losing its effectiveness?  I use a re-breathing mask with 15 LPM flow.  I probably shouldn't stress as its working, but it does worry me that headaches seem to be coming back every 3 to 4 hours vs. being gone all day.

Great to be part of this group where people actually understand what I am going through.

Thanks.

Sorry, typo on my part, I am using a non-rebreather mask.  Thanks for the clarification.

Setti wrote on Nov 15^th, 2010 at 2:48pm:


Hi Setti welcome
I’m chronic & go from low cycles to high; when in a high cycle I can get hit multiple time during a day with most of the hits being during the night, one thing that I found works really well for me & some others is while in the middle of killing a hit with the o2 is to take a Migrovan tab “Aussie migraine med”.
This may sound strange that one could think of taking a tablet in the middle of sucking o2 but after months of relentless belting's and very little sleep I was game to try anything & what it did was give me a 6-8 hour break before getting hit again, I’ve used this time after time without fail so far.
May be worth a try.

Cheers
Barry

From your description I think you are just going through one of the Beast's morphs.  Just when you think you have a handle on it it changes.  I'm glad 15 lpm is working for you, but if it starts seeming to lose its effectiveness I would suggest strongly you get a higher flow regulator and an O2ptimask from the CH.com store.  They make a world of difference for me.

One hint with the 5 hr Energy.  Turn your head back and pour it directly down your throat.  You don't drink that stuff for the taste!!!  Especially Orange.   It does work though.

Jerry

It sounds to me like you need to up your flow rate on the ox.  Because I can abort faster at 25 lpm I actually use less than when I was at 48

I can't answer about the Meletonin other than it is over the counter.  I can't use it.  I stay grogged out the next day, but it works for many/  You will be hearing  from them I'm sure.

Jerry

Thanks for the support everyone.  I had a really bad episode last night, got a headache at about 4:00am that would just not go away. Finally had to take two Tylenol 3 with codeine to knock myself out, feel like crap the rest of today.  I think the main problem was I woke up with a full blown headache, at that point, it makes the oxygen less likely to work. I am going to try some melatonin to see if it can get me through the night without a headache that way I can deal with the headaches through oxygen as soon as I feel one coming.  Any suggestions on doses for melatonin?

I tried Verapamil with limited success years ago, may have to look into it again.  Rough night last night, would like to avoid it again if possible. 

M

I take 10mg time release 1 hour before bed.

That's great news, here's hoping you're seeing the light at the end of the cycle soon!

Joe