Thank you, sounds about right. This is an unfortunately high and unfortunately long one, for me.

Thanks, Jerry. I've just had to learn slowly because while I've been dealing with the beast for coming on two years, my headaches really didn't seem to fit clusters at first. I mean, they shared some of the trademark characteristics but were also missing a lot... I believe my diagnosis was "atypical cluster headaches" (a lot of good that does me). Over the past 6 months or so, my headaches changed slightly. They are now in a much more typical chronic cluster pattern, but I'm still learning to live with the slight differences in my HAs now. I'm seeing Doc on Tuesday and we need to get a little more aggressive to deal with the current high cycle, but hopefully we'll get on top of it...

I actually had (what I thought to be) a rather brilliant idea yesterday that I need to bring up with Doc tomorrow. I have found a number of medications that DO help for the most part, but usually their effectiveness wanes after a few months. (For example, had great success with Verap from August-Oct. this year, and then this current high cycle started even though I'm still on 800mg). Maybe I need to be on some sort of rotating preventative schedule, as well as my abortives.... I'm also working on the O2. It's never worked for me in the past even though I've followed all the tips on the O2 info page here and always used very high flow rates (>25LPM) but there's no reason not to give it at least one more go... I just feel a bit at a stalemate for the time being.

I should also clarify it seems that I cycle through high and low fairly quickly and briefly, most times. This time is longer than usual. When the Verap was most effective, I was making it 3-4 days in a row without headaches, and sometimes would get 1 or 2 in a day. Then there would be 3-day stretches where I'd have 4-5 a day, but much less intense than right now (probably thanks to the Verap), and then after a few days I'd be back down to none or one. They're really all over the place, which makes it so difficult...

The amount of caffeine/taurine it would take to help knock an attack down even two notches on the kip makes me feel so sick and wired it's almost not worth it. I've tried slamming a single red bull for the caff/taurine in conjunction with a bunch of coffee I used to keep in the fridge specifically for these occasions (just to give it a go), but I have mostly cut caffeine out of my daily diet other than some tea or a soda with dinner, so it really overwhelms me and just makes me feel worse. I continue to experiment with caffeine and energy drinks but it's a bit of lose-lose as they don't seem to help much and then just make me feel crazed and even more frazzled when the caffeine kicks in. The most I can seem to handle without feeling weird is a 20 oz. bottle of dark cola, which occasionally (but not always) helps take the sharpest edge off.

I am in a particularly unfortunate spot right now because my headaches do last on the longer side of CHs when they're in full force... usually over 2 hours, almost never more than 3.5. But they definitely can go on that long and frequently do. I can't remember the last time I had a <hr long attack, other than the times I was able to tackle it quick with zomig or trex before it got too out of hand.

My BP is starting to get into the realm that my Doc doesn't want to increase the Verap much more, and I don't think either of us are certain that going up another 160mg will make a phenomenal difference at the moment considering I'm already on a pretty high dose. I'm also taking 300mg of Neurontin a day on top of the Verap, which he put me on as soon as I called and said SOS. No change, though.

Icepacks and air conditioners are my best friends... I always feel a little better during an attack if I'm in an ice-cold environment with a pack on my face; the beast really overheats me. I've never noticed a real decrease in pain from an icepack, but they are at least somewhat soothing to me and I try to stick one on my head for every attack if there's ice available.

Thanks very much for all the support; I do feel as though I am in very good hands... but even the best hands sometimes get flustered in the face of treatment resistant chronic clusters. Doc has been wonderful, though, so hopefully I'll come out of this appointment at least feeling a little emotionally better. We all know what it's like fearing day in and day out how many attacks today, how bad, etc... it's really wreaking havoc on my mental health. But I'll be fine. Just need a thorough Doctor's appointment, which I have coming up quite soon.

Clusterbusting seems like a no-go for me... while I am 99% better now, I have a history of serious psychiatric problems so it doesn't look like it's a viable option

If taking other medications, check interactions, even ones that may block effectiveness of a preventative.

Zac,
  I know this is a few months old, but i just wanted to chime in. I too am a Chronic CHer, and I also have cycles of high and low CHs

I am in the same boat as you in that my prevents didn't work, the side effects were horrible for me (especially Lithium. I swear it made me an emotional wreck...my wife said [afterwards, not during or it would have hurt me too bad] that it was like being married to another woman. I would cry at the drop of a hat, and i'm not a crying man)

When i am in a High Cycle (3+ hits daytime and 2-3 each night) i do what i can do abort, but my neuro and I are having a hard time finding anything that works. I've noticed, with the help of my headache diary, that (like many of us) the Winter solstice tends to ramp up a HIGH cycle. I get BAD night ones during winter months, and tend to get bad day ones during summer months, with low periods in spring and fall (as long as my allergies are under control).

While i don't have a lot of advice for you on this, i can 100% understand what you are going through. If you aren't keeping a headache journal, i would advise you to start, as they are amazing in their ability to help you plan your life around these demons. Even though we are Chronic, we have periods of bad and periods of good. It helps to know in advance what you will be up against!!

Callin,
i've heard of the botox route but never wanted to try it. Have you done it in the past? how does it work for you?

Chronic is a life stealer sometimes with those 5-6 hits a day and 4 more at night for good measure. I've had adverse reactions to every med i've been tried on. Busting hasn't helped. but, as with everything else, make due with the PF times inbetween.

Like one of the other Chronics on here said, life is time between hits, not the hits (horrible paraphrase i'm sure) but i've kept that bit of advice to heart, and add it to my Demon Dance mantra of "this too shall pass".

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Yes please do. Good luck, PDFAN

I am chronic as well and I have roughly 3-4 high cycles per year. They generally last 1-2 weeks.  I am in one of those cycles right now and understand your pain.  Not sure what triggers these cycles.  My wife seems to think they come with a change in seasons or the pollen in the air.  Just when I think I have some normalcy and control over the beast with one or two hits a day, I get hit with these high cycles.  Hang in there and wait for the lull.