This was going to be a long rant, but am too tired to proceed as planned . . . waiting on the beast, but know he won't show up till I've passed out.

  To save much typing and duplication, please go to Batch's thread "123 Days & counting" on the Med Board (page 9) and read my reply (sounds like good news)  . . . then to page 11 of same thread for this evening's reply (not good news).

  In the first reply, I mentioned that I had only used six tanks for the year through May.  In the second I'm sad to report 25 tanks have bitten the dust in the last five weeks.

  Having nasty, hard hitting, rapidly ramping attacks totally out of the ordinary in their response to 02 . . . thus the fear.  Night and day hits which, despite getting on the 02 (3 litre bag) and frozen gel packs at Kip 2, are ramping to Kip 7-8+ in minutes and taking 20-45 minutes to abort . . . . much like the days before I found out about 02.  Ten years of these damn things and thought I was in some control.  Prior to these last weeks, haven't had a real dance in over a year . . . I guess he's been holding on to the dance tickets.

  For me (and I assumed most), the triggered attacks have always been worse and ramped faster than a random or "scheduled" attack.  That's how these are acting, but haven't been able to identify a new trigger.  Since 5/04, have used water therapy to good effect, triggering attacks (and series of attacks) if I cut down on water intake, but still able to abort with 02 within 15 min usually at Kip 5-6.  These things are a new trick of the beast and I'm very fearful of falling into the category of clusterheads who no longer respond to 02 . . . especially since I can't use Imitrex (some artery blockage and high cholesterol)

  If I can't find a trigger and this continues, will have consider going back on Verapamil . . . which concerns me because my BP has been strange this past month also . . . 6/2 at GP (morning) - 80/50 .  .  . 6/16 at Oncologist (afternoon) 132/92.   My BP usually runs 120/80, within 10pts +or- on either number. 

  I don't know what's happening, but the fear (of the next one) is back.  Now that it's after 4 am, I'll hit the sack and hope for the best.

  DAMN! . . . I hate these things.

    Be Safe,    PFDANs

       Richard

Richard, I hate these things for you and for me as well. I understand the fear. You know I get the pain. My best advice is to do what sounds like an exercise in frustration but can actually help with the fear...unfortunately it will not have a short term impact on the pain but one thing at a time. Begin an exhaustive list of everything you have tried and done to abort and prevent the attacks. Sort of like a CH diary in reverse, looking back over a year or more, as far back as you can remember. The idea is to engage your rational processes in an analytical way which will have adverse effects on your ability to feel fear while doing it. You are searching for patterns. You are also searching for something you have not yet tried. In addition, you are creating a list of things to do which may or may not have worked in the past but which might work now or again in the present. You become a detective poring over the clues of your own medical history. It will give you some feeling of control and you may discover some new or old means which can be effective. Good luck, and God bless. lance

What Lance said...and then some.

Read your post in Batch's topic, sadly, one of the beasts most frustrating habits is his ability to morph and get his way around what ever you're doing to keep him at bay. It's why we remind people to enjoy your pain free time, but never stop your research into more ways to fight, and always stand ready to do battle.

Have you tried lithium as a prevent yet? It blocks 60-70% of my attacks at 1200 mg a day. Sounds like a lot of lithium but if I didn't tell you I was on it you'd never know. With your blood pressure issues it might be a better alternative as a prevent.Have you tried combining an energy drink, monster red bull etc., with your 02? It seems to speed up my abort times and pushes off the come backer attack.

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Maybe time to look at alternatives too. For people like Brew, when literally NOTHING was working, busting gave them their lives back.

Hang in there, I hate that you're hurting, high cycle sucks. :'(

Joe

The range of BP you report does not strike me as extreme given the emotional intensity you are now experiencing. Obviously, an issue to take discuss with the doc but--layman's read--not a range which would preclude Verap.

However, see the PDF, below, for the latest ratings on Cluster meds.

I'll push Zyprexa again as a viable alternative to Imitrex. A number of us have had excellent response, quite consistent with those noted in this abstract.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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While we regularly write about anxiety & such here, I'm disappointed at how little evidence I see that many folks are actively working on taming their emotional responses.

This approach is quite effective if you are willing to devote some time to training yourself on how to alter thinking patterns....

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Lance, Joe, Bob

  Thanks for your replies and suggestions . . . I was definitely stressed when I posted.

  Today has been a MUCH better day.  Didn't get hit last night . . . just woke with very sore neck and back of head (ch side) which lasted a couple of hours.  One hit today which responded normally (for me) with the 02 and icepack . . . killed in 15 min. at Kip 5. 

  Have been slamming down the liquids all day  . . . we'll see what the night brings.  In retrospect, I probably have, due to heat and inactivity made more of a reduction in water consumption this past month, triggering the damn hits. . . . which also reduced my water intake, i.e; had one night with 3 bad attacks, woke at 7am with another, exhausted went back to sleep to be wakened with another, repeat two more times.   So ended up having four attacks between 7-11:30 am  . . . .  sleeping, not drinking.   Whenever I've suggested water therapy, it's always been with the caveat, it's NOT EASY to do . . . . I broke my routine and have been paying for it.

  If I'm wrong, won't take long to find out and I'll be considering busting or possibly the lithium or Zyprexa.  Will let you know tomorrow what the night brings.

  Oh . . . off topic . . . is there a meeting in Nashville this summer or have I already missed it.  Have my annual checkup with surgeon at Vanderbilt in a couple of weeks . . . could change schedule if there was an opportunity to meet other clusterheads in person.

  Thanks again . . . yak atcha tomorrow.

     Be Safe,    PFDANs

        Richard

My wife and I catch a flight to Nashville tomorrow morning, most everyone else arrives on Thursday. Last minute but could you at least stop by and hang out? ;)

Joe

Wow Joe . . . that might be possible.  Was planning on spending a couple of days in the area . . . still haven't seen the house my daughter bought in Smyrna (just south of Nashville . . . so have a place to stay and visit with her, grandson and son-in-law . . . which was the plan on the check-up visit).  Would you pm me the info (where?when?), and if you don't mind phone # (We have full package for puter and unlimited long-distance).  My surgeon is aware of the CH and I don't think it would be a problem to change appt to following Monday . . . will bring at least one guitar (and several "E" tanks)

  Re last night's "visits". 
    Had one attack before bedtime, one at 1am, another at 4am, up at six, small hit at 10am, another a few minutes ago.  Killed all of them in 10-15 min (5 min for the last two) on one tank and still have 600 psi left in that tank . . . being out in the heat for 15min triggered the last one. None over Kip 5.


    So .  .  . back to some control . . . just need to realize he's after me right now and keep slamming the water.

      Be Safe,   PFDANs

         Richard

Check yur PM's!

Joe