Hello and a Question about a Tough Cycle

[davepmoll]

Hello to everyone.  A great resource and community you have here. 

I'm a classic acute CH'er.  Got my first one at 11 years old.  I've been cyclical since 20.  I'm 41 now. Spring is always tough for me.  The autumn cycle has waned a bit in my autumn years.

The past six years has been as predictable as these 'alarm clock headaches' can be:  2-4 week cycle that starts in April, CH wakes me at 11:30 pm, oxygen therapy for 20 minutes, at about the 10 day mark I'll get one at 2:30 in the afternoon, and then that night I'll get one that mocks my oxygen therapy while I suffer through it.  Cycle runs its course, see you next Spring.

This cycle has been nothing like I've ever had.  Over a month ago the wife and I were out for dinner.  One beer into dinner and Hello Beast.  Not a bad one but he was early this year. I waited and waited for the cycle to start but nothing for a few weeks.  Once the cycle starts, I can tell already it will be a tough cycle: a couple headaches a day, but oxygen is working.  Then it became one after the other starting at 5pm.   I'd treat that one and get another at 9pm.  Then another around midnight.  Then I would sleep. 

Last Wednesday I got my 5 pm headache.  Oxygen barely treated it.  My 9pm one was the WORST one I ever had.  Intense pain.  Oxygen did nothing.  It just didn't stop.  My poor, scared wife had enough and took me to the ER at 3 am (with our 4 year old in tow.  My wife is something special but I am sure most of you CH'ers can say that).  They pumped me full of IV drugs: Relgan, Benadryl, steroids and other drugs I can't remember.

The headaches were gone after that but returned again two nights ago.  Now I just get them in my sleep.  The CH wakes me, I treat it and it returns 90 minutes later.  This happened the last two nights.

Thanks for reading this far and now I can ask the question:  Is this just an odd cycle or is something else at work?  Are these acute headaches becoming chronic?  Any suggestions for breaking this cycle?

Thanks again and my heart goes out to each and every one of you who has to manage this horrible condition. 

[Bejeeber]

Hi Dave,

First of all I'll opine on this:

Are these acute headaches becoming chronic?

I don't see a particularly compelling reason to entertain that worst case scenario concern just yet. From what I've seen and experienced, the weird morphing of your once predictable CH attacks after 20+ years episodic is actually kinda NORMAL for an episodic.

Yep, the CH can take some cuckoo left turns after decades of convincing us it's behavior is ultra reliable, happens all the time. The good news I suppose is that you may even find your remissions extending longer, which happens often enough.

Now that your CH has shown it can go into overdrive intensity wise, and/or will return after 90 min, you'll need to hit it with an O2 rig that packs a heavyweight counter punch. we're talking 100% O2 at a higher liter flow, which very likely will be more effective. Here's the good info on that: https://clusterbusters.org/?page_id=77

You also sound to me like one prime candidate for knocking the CH cycles out altogether with busting. Here's a riveting National Geographic segment covering that subject and featuring our forum member Hipshot/Dan:

https://www.youtube.com/watch?v=qFuL7pcShDk

Awright, now I'm going to hit "Post Message" and see whether CHfather has beat me to the punch with a reply.  His advice is golden BTW - taking it very seriously can result in tremendous CH relief. 

[CHfather]

Asleep at the switch here again . . .

Couple of things to add to Jeebs's good advice.

Are you staying on the O2 after an attack has been aborted?  That's been found to prevent or lessen the severity of a possible next attack.  Stay on for 5-10 minutes.

Try an energy drink or energy shot just before the O2.  Shot is easier to get down quickly, and just as good (6 Hour Power, 5 Hour Energy, Monster Hitman Sniper). Helps a lot of the time, though not as much if you're awakened by one that's already pretty far along; somehow typically does not keep people awake (although that Hitman Sniper, which has a ton of caffeine, might, I suppose).

Some people find that a substantial dose of melatonin before bed helps with the nighttime attacks.  You could consider starting with 6-9 mg. and add 3 mg. per night until you've found what helps.  In cycle, some people are up above 20 mg.  (Some folks have found that the chewable type, which often comes in much smaller doses -- Trader Joe's version is .5 mg -- works faster and better. Of course, you wouldn't take as much.)

I'm gathering that because your previous cycles have been pretty short and manageable, you don't have meds beyond O2.  If you're going the conventional meds route, you'd want injectable imitrex, I would think.

Jeebs is of course right about busting, particularly if you're now only using O2.  You can get some supplies (RC seeds) overnighted to you and start using them, as Jeebs likes to say, toot sweet. 

If you're anywhere near a store that sells homeopathic stuff and you meet the medical conditions, you could try the licorice root protocol. Basics here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068.

And there's also probably no reason not to try the D3 regimen described here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

[davepmoll]

Thanks for the replies. 

I'll try staying on the O2 longer.  Busting is what brought me here and I am willing to try it.  In the meantime I will look into the licorice root. 

O2 has been so effective and since I get most of them at night, I gave up Imitrex long ago.  In fact, Maxalt was better for me than Imitrex and Maxalt didn't have the nasty tight-muscle feeling. 

Thanks again.  It's good to hear that this strong cycle is just par for the course. 

[CHfather]

Busting is what brought me here and I am willing to try it.

  You should look over the numbered files in the "ClusterBuster Files" section of this board, particularly #s 1, 3, 5, and 6. Here's a link to #5, which is about LSA: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974  If you decide to proceed in this direction, check back for specifics.  If you're thinking about buying some RC seeds just to have them, a lot of people here feel good about these vendors: www.iamshaman.com; www.tranceplants.net; www.psychoactiveherbs.com.  I'm not sure which would have fast delivery options.

[weatherman]

Hey davepmoll ....

One things for sure.  Even when we live with CH for years, track every occurrence, figure out what our triggers are and think we can deal with it  ..... the Beast changes the game.   Your story is common with those who have dealt with this for awhile.  Variation is prominent in the cause, might as well be in the treatment too.  Try different things, you never know what will work. 

You can easily do variations on O2 use, time and flow rates.  Energy drinks, cold air/water and sometimes exercise can help.  They're cheap and readily available too.

By all means go for the busting.  It's really not that bad and you might just find it as enjoyable as some of us do.  Getting supplies is the toughest, and growing is easy but takes some time.  There is a TON of information and experience on this board that you are certainly welcome to draw on.  Go for it!

Jeebs and Chf's advice is GOLDEN ... you got a good start.

Best of luck, I know you will beat the Beast this time .....

weatherman  8-)

[MoxieGirl]

Hi davepmoll,

The only consistent rule I've ever found regarding clusters is this.

No two cluster sufferers are the same, and just as soon as you've figured out the rules of your clusters, they change.

Hang in there.

MG