Once again i am up re-cooping from an hour long Cluster H/A. I've used my oxygen, taken pain meds and am almost ready to go back to bed. I called my Neuro today and left a message stating I needed something to knock me out at night that a H/A would not break through, I am so sleep deprived. I hate what these Chronic H/A's have done to the quality of my life these past 2 1/2 years, my life is driven by and worked around Cluster headaches. I feel like there is no end to this cycle, and that is to say at  the least, quite depressing. I've had 5 H/As today, too much to bear, but I have no other choice. I'm fortunate that my doctors are working in concert to find a way to break this cycle. They have tried almost everything, I hope they don't give up! Well, time to try to sleep until the next hit.
Richard in San Diego

Richard, I'm going to go out on a limb here, but I wonder whether or not the severity of your CH might be an artifact of the treatment regimen you've received thus far.

I've been here for a few years, and we occasionally see people who come here whose chronic CH is so intractable and severe that their ability to function is seriously impaired.  What all of them seem to have in common, however, is that they've received a cocktail of powerful drugs, including narcotic pain medications--morphine and fentanyl included.

Whenever I see this, I have to wonder how their situation is improved over taking nothing at all.  Are you better for it? 

Granted--the evidence that narcotics can increase the frequency and severity of attacks is inconclusive at best.  But please take a look at Svenn's story at this link, and ask yourself whether his experience might mirror your own:

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Svenn is now two years pain-free, by the way. 

I'm not trying to second-guess your medical team, nor am I being judgmental...  But doctoring aside, it's your body and your life.  Have things improved for you?  If not--is it worthwhile to follow this road any further? 

Again--I'm not trying to suggest that you ignore medical advice, but as a very wise man has said here, many times, if you merely present yourself to the doctor and say, "fix me", you're letting yourself in for a lot of pain. 

I hope you will consider this post in the spirit in which it is offered--that it may be time to assess where you are, and where you are going, and whether it has improved your life, or has made it worse.

All the best,

George

Richard, been right where you are and if I went back thru the archives, I'd probably find a message about like the one you just wrote... so when I say I UNDERSTAND - believe me I DO!

Now, that said... I'm with Joe on the narcs.. they cause rebounds and make the damn things worse, so I'd question docs giving them...

For sleep -- I use melatonin - gets you thru the REM sleep where the CH hit and it has almost (not always, but mostly) stopped night hits for me so I do get the rest at night. It took the third try befor I stuck with it for two weeks and let it start working, but when it did - well - that was years ago and I've been resting ever since at night. Now I don't go to bed without it.

The O2 - used it for years on the WRONG flow rate - gave me something to do, but I swore it didn't work... till I got "educated" and started doing it right (took a guy on this board getting on Skype and yelling at me, but after he got my attention -- the rest is history). Now I can abort a headache with O2 in a couple to five minutes. I just got angry cause he didn't yell at me sooner.

And yes, my doc filled me full of narcs (one time) and got me knocked out, but the CH came thru - I was so doped up that I couldn't walk and ended up on the floor - someone found me and went and got my doc brought him to my house and showed him what I was doing -- I was banging my head on the floor yelling to die and was too doppy to crawl. It made an impression on my GP and he NEVER gave me a naracodic again. They just don't work on CH. Vaso-constictors do..

If we come across to you as harsh - it's not intentional - it's just that we've BEEN there and KNOW how you feel and what doesn't work and how it can harm you (and docs are NOT always right - you've got to do your own research).

None of us want to see another CHer hurt and we're here to help - but talk to us.. What are you taking and how much - How are you using the O2. We want you out of pain... but you have to talk to us..

And for the record - today I'm on my third hit of the day... BUT, I've hit the O2 and am working and keeping my 18 month old grandson who just turned over a filing cabinet with files in it and I've got to go sort that out. Not what I had in mind with my head pounding, but ...  So see, when I say I understand - I DO...

BD