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struett

5 hours? wtf

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Been away from boards a while-im episodic(21 years) every 6-18 months get a cycle of anywhere from 3 1/2 to 6 weeks long(one 12 but dont like to remember that one)

--been able to manage with only o2-no meds and can get thru but this time things changing.

Im 4 weeks into cycle-mostly middle night and can knock out with 10-20 min o2 15 lpm.

BUT last 2 weekends ive been hit with afternoon attack and o2 doing nothing-reaching kip 10 and lasting 4-5 hours till finally wears down to the point i can pass out

I have never had attacks lasting that long at that high pain level-ive had bad days where it lingers type of thing after an hour or so but to last that long is new and as u all know really tough to deal with.

ive tried rc in the past(was already deep into a cycle so not really sure if helped)

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"WTF" is right.  :o

That's thoroughly horrifying to hear of - as common as it is for CH behavior to suddenly and unexpectedly change after many years or decades of predictability, this 5 hour thing is way off the charts.  :o

You definitely wouldnÂ’t be the first one who, after 20 + years with CH, finds it necessary to bump up the O2 lpm considerably, and otherwise optimize the delivery with hyperventilation, etc. in order to get it working again, in your case for when those severe whopper attacks hit town. ThereÂ’s also the thing where some CHÂ’ers find an energy shot/drink right at onset helps the O2 work better.

I was thinking if it was me, IÂ’d be going straight back to the busting ASAP (I personally have found vitamin M to be more effective than RC so far, but everyoneÂ’s mileage does vary with this and seemingly all things CH related), but re-reading your post, I see you could possibly be near the end of your cycle.

So there is a bit of a gamble with busting at this point I suppose, since it's possible your cycle could be ending soon without any busting intervention, and there is the risk of slapbacks from busting, especially when in high cycle.

In any event I would be prepared to bust and bust big for prevention before the next cycle, or right at the very first sign of the next one, that being a time where there's high likelihood of busting success, and no real slapback risk as far as I know.

It's also common enough for episodics to find their remissions lasting longer after a couple decades with CH, but also for the cycles to become longer, and attacks more severe, if that sounds like a familiar pattern to you.

Since you've mosty experienced night time hits, and the afternoon blasters are a newer development, I'll remind this coming weekend please DO NOT RELAX too much. Stay real engaged in something at all times when awake, since the beast loves to hit hardest when we relax. Don't even think for a second of taking an afternoon nap.

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Great advice from Jeebs.  To learn more about getting more from your O2, please read the CB Oxygen File that is under the black and white MENU tab on the left side of the page.

Don't miss this important point:

ThereÂ’s also the thing where some CHÂ’ers find an energy shot/drink right at onset helps the O2 work better.
If you can, go for something high in caffeine and taurine.  Shots tend to be easier to get down faster. The Monster Hitman Sniper shot has a whole lot of caffeine; so does the Monster drink in the blue can.  (For most people, the caffeine doesn't prevent them from getting back to sleep.)

Since getting busting supplies can take a while, you might want to consider the licorice root method. You can get the licorice root extract at any store that sells natural medicines. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

Also, for some people the vitamin D3 regimen has quickly ended cycles or reduced their severity: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

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Thanks for suggestions, I do use energy drink at onset-

I was actually thinking of trying to relax more-was golfing when the biggie yesterday hit.

There have been many cycles that  I get 3/4 weeks in and think I should've been busting, but when it goes away it's just one if those things I don't like to even think about-I guess I need extra push to get prepared for next time.

I'll give the root and d3 a spin after I read up on them. Thx

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I have reached 5 hours but that would not have been possible with some good (read: bad) drugs helping me out. There was at least verapamil (over 1000mg per day), cortisone (prescribed for daily until the end of time), triptans way over daily max + couple of epilepsy meds. How horrible the extension was they brought me my first hits ever where I lost consciousness. Kinda grim relief.

But in your case, no medication, this is very, extremely rare so I would get a head MRI asap. I am guessing something strange in brain chemistry, might be a good idea to check out the bad options away first (tumor, blood circulation things etc.) before heading into busting or other options.

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I'll give the root and d3 a spin after I read up on them.

You'll probably want to try just one.  The licorice root might work faster, I think (but pay attention to the cautions -- and if you decide that the D3 might be better, go for that (and you might want to get on the regular D3 regimen in any event)).

Of course, I think Tony's thoughtful advice is worth considering.

Regarding O2, it sounds like for at least one of your bad attacks (when you were golfing) maybe you were out of reach of quick access to your O2. So it might be that your 15 lpm system is generally fine. Most people do find, however, that the O2ptimask alone significantly reduces abort time, as do breathing strategies that are abetted by a higher-lpm regulator.  So you might add those things to your preparations for next time.

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Thanks-new mask getting delivered tomorrow and just bot the root and skullcap-I had o2 in car so got to it pretty quick. And the previous bad one had quick access also. As far as MRI etc I've had a couple in past, and from being so familiar with the pain it's cluster. I'm currently sucking o2 from an attack that started 10 minutes ago and seems to be working( well enuf I can think relatively straight enuf to type this)

Thx all

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struett,

I'm going to pick and choose, and double up on key points from the posts above :)

++ Energy drink slam, right before hitting the O2 at a high LPM

++ I'd dose and hit it hard - Even if you cycle is close to it's normal end.  There's nothing wrong with shoving the beast out the door. :)

++ It's a scary thought, but my cycles got longer and harder as I got older.  Eventually turning into 2 cycles yearly that nearly merged together with no pain free time between them.  Strongly recommend preventative busting.  No reason to let the cycles in, if you don't have to.

++ Fungus seems to be universally more reliable on the busting and on the reliability of the measured dose.  Some people have good luck with RC, but there's a HUGE amount of variability in trying to dose with them.

PFW,

J

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At the risk of sounding like a cheerleader, I have to commend you J on another stellar post.

[smiley=thumbsup.gif]

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