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.

You should be using a NON-rebreather mask. Not sure if that's the problem or not, but you don't want to be re-breathing any exhaled CO2.

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

Some of us have had great success with using melatonin before bed in order to avoid the night-time hits.

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

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.

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

Hi Barry,

Thanks for the welcome and reply.  I am in the US, so I will look for an equivalent out here and give it a try.  As most people can relate, we will try anything to get some relief.  I am also going to buy some 5 hour energy drinks, never tried it before but it seems like it helps with the after effects of a headache.

Thanks.

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. [smiley=hurl.gif]  It does work though.

Jerry

Thanks Callico.  It definitely seems like I am going through some change this time.  In the past years I had a pretty steady 1 a day headache, right in the morning, could almost set my clock to it.  This round I seem to be getting them at 2AM, 4AM, 7AM, and then once or twice in the afternoon.  The oxygen is working, but at this rate I am going through a M size tank in less than a week!  I might need to look into melatonin so that I can get through the night without waking up.  Do I need a prescription for that?  I have been trying Benadryl (just because it zonks me out) but the headache wakes me up.

Just seems really odd that it would change after so many years of the same thing... I thought maybe the O2 had something to do with it.

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

Hi Setti,

I have had similar experiences. In these cases I do wonder whether the O2 or other abortive is knocking it down but the factors that triggered it in the first place are still lurking.

I found that taking it down with O2 and then dosing with Verapamil can help. Of course it is necessary to stay on the O2 for about 40min to allow the Verapamil to get moving. If you use pain medication the same thing can apply....knock it down with O2 and then a lower dose of medication should help to hold it at bay.

Good Luck!

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'd start at 9mg, 30 minutes before bed time, adjust up or down after a few nights. Some go as high as 15 mg, a couple of people take half of their dose in regular release melatonin, and the other half in extended release tabs, seems to help them get through the night.

On cycle I keep an E-Tank leaning against my bed so in seconds I can fire off the tank and be on it! What sucks is when I DREAM I'm having an attack, DREAM I'm starting the oxygen, DREAM it's not working and the headache is getting worse! By the time I wake up I'm really getting slammed! The joys of the beast! :'(

Joe

I take 10mg time release 1 hour before bed.

Hi All,

I thought I would give an update since everyone has been so helpful.  I have added melatonin to the routine and it seems to be working well.  I started with 6 mg for a couple nights and it worked OK but I would still get a headache at around 5AM.   I upped it to 9 mg and last night slept through the night fine, had a small headache right when I woke up but it was fairly quickly relieved with oxygen and was headache free the rest of the day.  On week 3 of the cycle, so hopefully I can keep it contained to a minor headache in the morning till the cycle ends.

Strong coffee and the 5 hour energy drinks seem to help too when in feel lingering effects, helps clear the head.  Also found that drinking a lot of water has been really helpful, helps keep me feeling full (for me, the feeling of being hungry is a major trigger).   

Let's keep our fingers crossed for a short cycle!

S

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

Joe

Hi Everyone,

Quick update - pain free for two consecitive days!!  Ever since I upped the melatonin to 9 mg before bed I have slept through the night and have not had any headaches during the day.  It way too early for my cycle to be over (typically 4 to 5 weeks) and I can feel the headache potential lurking in the background, but I can't hide the fact that i'm pain free for two days. So anyone on the fence about melatonin, I encourage you to give it a try.  If anything, it should help get you through a night pain free. 

Trying not to get my hopes up butnit would be nice if I had a shooter cycle this time.   Thanks for everyones support!

Setti