Hi Everyone

My husband has had CH's for approx 30 yrs, 18 yrs that I've been with him.  He is 48.  He gets episodic CH's, usually about once a year.  Since learning about O2 therapy on this site in 2002, we have used only O2 to abort his headaches.  In full mid cluster, he gets about 3-5 per night, once he falls into REM sleep, and using O2 usually aborts them within 15 mins as long as he jumps on them very fast.  If he wakes to a CH, then the results with O2 are mixed and may or may not be sucessful.

He had been PF for 3 yrs, until 3 weeks ago.  O2 this time seemed to be working, but the first bad night where he didn't feel that he was getting enough O2, fast enough, had me back onto the website looking for new information for him.  Reading about the masks, had us tweaking his NRM, and now he breathes straight from the valve, in and out as properly outlined on the website and at a higher flow rate than previous years.  This modification was because he only really breathes through one nostril because of an old hockey injury and this time, seemed panicy that he wasn't getting enought O2 to beat the CH.  We are using 15 lpm now instead of 10-12.  The CH's seem to be much stronger this time; still 4-5 a night, nothing really through the day, and taking approx 15-30 mins on O2 to completely abort (the last 5 mins is when the CH is gone, just making sure...)

So...we are tired!!  Yes, we are having a great success rate in aborting the CH's, but bottom line, we haven't had REM sleep in almost 3 wks.  I wake with him for moral support and to help him remember to breathe deeply and calmly as he panics with the pain intensity (ice picks of joy).

Reading again on the message boards, I am wondering about him trying Melatonin?  For him, the worry is that if the melatonin puts him in too deep a sleep, will he sleep through the shadows that wake him that a CH is coming, and allow him to jump on the O2 really fast for success?  Or does melatonin somehow allow the person to sleep for 4-5 hrs, and only have a couple CH's during the night?

I am also curious as to using this higher flow rate of O2...should it abort the CH's quicker than the 20 mins average that he experiences, or are the CH's just stronger this time, and we should be thankful that the O2 is aborting them at all?? 

Not sure if I've given you all too much info or too little, but I thought that I would try to get a quick post going (my first on hubby's behalf) as night time is approaching.  We stay awake as long as we can, to delay the start of the nightly dance, but are getting so tired that about 10:30-11pm, we are off to begin the dreaded night hours.  Work through the day is getting tougher and tougher.

Thoughts?  Other info needed?  Thanks in advance to anyone who is able to respond, or post this to the proper area...

Denise (and Lyle)

There is a supporters corner on the main board, and like
yourself being a supporter for your hubby you may get a better response there. As Don said Melatonin at 5-15mg
two hours before going too bed is known to keep the beast
at bay.

Hoppy.

Hey Denise,
sorry it was another rough night. I had asked if Lyle is taking any preventatives such as prednisone, verapamil etc. aborting CH with o2 is great, but working with a physician and finding a prevetative can also be key to findng relief.
Usually prednisone works quickly within a couple of days, but typically only taken for 7 to 10 days. Often times another preventative can be introduced and be effective by the time the steroids are no longer being taken.
there are also some who have found the anti-inflammatory regimen to be succesful.
the key is knowledge (plenty of that available on this site, and many who are willing to work with you/Lyle) there seem to be two more keys to finding relief, working with a physician, and patience.
Easier said than done on the patience side, but even Melatonin is likely to take 1-2 weeks to offer any benefit.
please continue to use this site and let us know any more details that might allow us to share experiences.
working with a physician that understands the condition will help. once you find something that offers a bit of relief, you and your husband will have more of a clear mind to deal with long term prevention and the method that works best for the both of you.
hope this helps even if just a little bit
-Don       

Hi everyone

Thanks for the support. Lyle has tried melatonin the last 3 nights with not a lot of success. Basically, I think we will just stick to O2 to ride out this cluster. Hopefully done in another 3 weeks max!?!  He has ordered the cluster kit mask from the website, which will hopefully be more effective than the regular NRM he has used over the past couple decades. Somehow this cluster seems stronger - still mostly the headaches at night, but 20-30 mins on the O2 does still get rid of the headache, so I shouldn't complain too much. Taking the melatonin seems to make him groggy to jump on that first headache of the night, and so that one is always more nasty. He might not take the melatonin tonight; I'm not sure.

I have been emailing with Batch, thus I have started Lyle on the anti-inflammatory vitamin regimen. Hoping to prevent the next cluster once this one is done!  No immediate results, but it has only been 3 nights. His biggest trigger is still REM sleep.  Well, I assume alcohol too, but we aren't foolish enough to test that until we know the cluster is done! As soon as he slips into the deep sleep at night, or if he tries to have a nap, it attacks. So we are pretty clockwork with the regularity of these things all night in bed. Nasty. He doesn't use any drugs except O2. I don't see that changing.

Lyle watched his Dad have clusters (he suspects anyway as it wasn't known or diagnosed on a small farm 40 years ago). We are keeping a pretty close eye on our son, 11 yrs old, to watch for any headaches. Knowledge is a good thing.

We will let you know when we are pain free again. (Sorry that I keep switching between he and we. I just would never want him to think he is going through this alone. As far as I am concerned, WE are in cluster and I'll wait to have a glass of wine with him once we kick this damn thing again!

Gosh I'm rambling. Too little sleep. Thanks, talk another day. Take care to all

Denise

Denise and Lyle,
My last cycle was lasting longer than usual (past 4 months) and when it was getting close to 6 months I started taking melatonin nightly.  After a few days I noticed a change in intensity and regularity of the "headaches" and they ended in 4 weeks after starting the melatonin.  I believe the melatonin was the answer then.  I have never used O2.

Hi Denise and Lyle,
After suffering from CH for 10 years and trying many preventatives, i came accross this site and promptly went on to the D3 regimen as per Batch, i followed it to the letter and I've been pain free since, apart for the occasional shadows at the same time every year, ie: spring and november for which i use O2. The D3 regimen is continuing to keep me pain free and also in better health all around.
D3 all the way. Batch is a life saver.