I've had ch's for about 6 years.  Been very episodic and sporadic until this year.  They were more spaced out early on.  But now I abort them with the prednisone, Treximet, etc., and they're back in 2 weeks, even with ever strengthening doses of preventative treatment.

I had another episode last weekend, the worst one yet!  i haven't cried from physical pain (besides from ch) since i was 11.  BAWLING!!!  Aborted it Saturday.  But now at 2 this morning after 30 minutes of sleep, boom!!!  There we go again.  They've been coming on more severe, AND FAST in this episode.  I was hopeful and in a great mood since I saw the dr monday and we doubled the dose of verapamil.  Thought surely that would stiffle them a while.  Now I've been awake since I had my attack and I am just exasperated.  Feeling pretty desperate and dreading the next one.  I used to be angry that I got these, pissed at the world, but now I don't really feel anything but hopeless.

I'm starting to think that maybe the surgeory option is going to be the only one that will work.  If anyone has had it or has info please let me know!!!!

It takes time for the verapamil to build up in your system. Give it a chance. I also notice in this post and others (unless I missed it) you haven't mentioned O2. Have you read the links on O2 and are using it-high flow, nonrebreather mask, pure 100% oxygen and hyperventilating, that sort of thing? lance

Hey Jared,

Sorry to hear you're having a hell of a time!!  If you haven't tried oxygen you really must insist that your doctor give you a script for home use.  It just might change your life!!  I'm in cycle at the moment and without oxygen on hand I'd be struggling!!!!!!

Let us know if you've tried it before - because if you have and it didn't work - we have found more effective means of eliminating hits in no time at all.  I can generally stop a headache in its tracks in around 10 mins if I get onto it quick.

Also have you read the posts recommending melatonin for night time hits?  or Red Bull energy type drinks - with caffeine and taurine?  There are so many options to try before surgery!

Wishin' you all the best,

Kate

I do have the oxygen, but it only really helps on the less serious headaches for me.  The ones I have had the last week, no effect until I break down and take the Treximet or Imitrex.

oh poo  ;) thought that might be the magic bullet.  Just read your other post and saw that you have used 02.  mmm what flow rate?  Sorry to bang on... just that it took me a few years to get it right - only the last couple of years that 02 has really made a difference for me.

Kate

Welcome to the board, ouch, you're in a tough spot right now. Do read the oxygen info link on the left, we've modified HOW it's being used and have seen a dramatic increase in it's effectiveness.

What is your current dose of verapamil. Some have to go as high as 960 mg a day to find relief. For a small minority of people, the combination of verapamil and lithium, will work when either alone has not worked.

Then go look at this site    clusterbusters.com    alternative treatments that have worked for many when standard treatments have failed.

Joe

Jared, please listen to these folks about changing your technique on O2, my husband and I have first hand experience that it really works. Welding regulator, right mask, and right technique (hyperventilating for 5 minutes, deep breathing for 10, if that doesn't work he'd take a 5 minute break and try it again- 2nd go round would knock out the ones that didn't want to walk into the light the first time).

Melatonin- we will never be witout that again. The O2 was great, but at peak cycle it would still mean he was waking up 2-3 times a night with difficulty getting back to sleep. Melatonin helped him get to sleep and stay asleep without a headache to wake him. If one did break through he'd be back asleep within minutes of hitting it with O2, no more tossing and turning for hours. If I had a choice my 401k would all be invested in Melatonin, welding regulators, and Red Bull.

Thanks to you all!  The oxygen isn't working incredibly well for tougher ones.  However, the max flow is 8 liters with the full mask.  I'll definitely ask about getting one with a higher flow.  I'm willing to try damn near anything.  I've had these the last 6 years, but never more than 2 episodes in a year, and not incredibly severe usually until this year, so I was never really too much on the meds until recently. 

If you Dr balks at rates higher than 15lpm, go to e-bay and buy a high flow regulator yourself.  They're only about $20 for e-tanks.  m-tank welding regulators can be had for around ~$40 delivered.  That's the route I went.

Good luck...

-Dennis-

I'll try insurance first, as they luckily have been good about my treatments so far, but that is very good to know!  Thanks!  BTW I finally passed out on the couch and thank God didn't get awakened by a headache!

Surgery? Don’t do it! You may get relief for a little while but your face will be numb, slide toward your chest and the clusters will still come back.

I've been starting to get the idea that surgeory (never could spell it!) is not such a good fix.  It made sense, though, to cut the nerve that actually transmits the pain.  Wonder why it would fail?

They just haven't perfected how to cut the nerve and stop the pain, without paralyzing most of your face! It's a very drastic step one would only want to consider of EVERYTHING  else failed.......certainly not a decision to be taken lightly! ;)

Joe