Maybe a stupid thought but here it is anyway,

  I have been suffering w/ CH for many years, typically bouts lasting 4-6 weeks followed by approx 18 months PF.  However, the last two bouts have been excruciating, relentless and longer then normal.  As a result of the last two bouts, it sent me on an aggressive and possessive search for any treatment / remedy for relief.  As most, I have found some success with Imitrex Injections, O2, Melatonin, Ice and Energy Drinks to make it through my bouts.  This bout, similar to the last two, is really having its fun with me, my emotions and thought process.  During my bouts, although I try not too, I find myself thinking about the beast constantly, when it will strike again?  Nonetheless, it got me to thinking, which is normally dangerous activity for me, its almost feels like, the more relief I find, whether it be Medications or Remedies, the longer and longer and more aggressive my bouts get.  Its almost like, the beast has a freakin mind of its own and will not let you get away without paying up in one way or another  !  I was wondering if any of you have had similar thoughts or experience, in that, the more battles that you win, does your war become longer?  

Dave.  

I'm chronic and yes, at times the beast takes over and is there constantly. Other times I don't consciously think about him. When I'm getting hit bad I do.

Don't know about the meds. I take topamax, O2 and ergotomine (abort).

I think when you're in pain - it just takes up your thought process a lot.

Hugs BD

It is a suspicion at this point for me. My cycles used to be 4-6 weeks, maybe at 8 at most. The past few have gone on to 10 and most recently almost 13 weeks. Feeling better everyday that this one is over. But, the increase in length of cycle has been during cycles where I've had to go to the Imitrex.

Could they be connected? Maybe. The tough question for me, is if I can get rid of a hit in 5 minutes and allow CH to be a minor disruption for 10 weeks of my life two time a year, isn't that better than not being able to be relieved and going through hell for 6 weeks?

Scott

I made a cone-shaped hat out of tin foil, and have been wearing it very effectively for 2 weeks.  It's all those satellites in the outer space beaming messages to our hypothalmus.  The beast isn't evil, but his masters in the shadow government are!

Seriously, though, Imitrex has been proven in studies to increase frequency of attacks and increase cycle duration.  I don't think there is much doubt about that.  I've heard many people stop the imitrex and find there CH gets much better.

You didn't mention what preventatives you've tried?

I've found the intensity of attacks and frequency often increases when doing battle to survive a cycle. Eventually I stay on the verapamil, though it seems like it isn't working very well, and end up with nearly constant shadows and low level cluster pain with occasional breakthrough attacks that are the worst KIP10s for long periods and abortives not helping. OK, I'll breath now. About that time, I give up and quit taking the verapamil altogether and rely on abortives. Within a period of a couple of days the KIP10's subside and only shadows remain. Within a week no shadows and cycle has ended. Usually 6 weeks total for me. Was it ending anyway? I don't know. But I always go through this with the verapamil. Usually a 10 to 14 day Prednisone series including taper works well at start of cycle. Of course staying on that nasty stuff isn't an option. Supposedly the verapmil will take care of things by the end of taper. Not usually the case for me. Oxygen and Imitrex both cause continual rebounds and often escalate attacks from a couple each day to 6 or 7 a day including night attacks which I normally don't get. I stay away from the trex in particlular. Alternating Stadol nasal spray and Maxalt tabs every other day is my latest regimen to abort. It's been very long remissions for me the last couple of cycles. Still hoping they've left for good! Best wishes for you, Rich

Hi Dave,

glad I saw your post 'cos I've been thinking the same thing. Both about the length of the cycle and the amount of pain - almost as if the Beast has so much to give you and you either get it quick and hard or slow and soft - (no sexual inference meant ladies!!)

For my first three attacks I used nothing as I didn't know what was wrong with me. Each time the attacks lasted about three months and came three years apart. I had lots of high value Kips.

Last time I use Trex injections - bt eventually found relief with Melatonin. The cycle lasted about 4 to 5 months.

This time I've gone straight onto the Mel and only have shadows or very low level pain so I'm going to se how long this one lasts.

Chappie,

about your cone hat!! I found a similar hat very useful but made mine from lead. Definitely shields me from those space beams and the ones from the microwave. Had to stop tho' 'cos kept getting odd looks in the street - would you belive some people thought I was crazy? - but real problem was neck strain. Working away in my underground laboratory to produce a new light weight lead - then I'll have it all solved.

Could tell you more but I have to go now - I have a rendezvous with a space craft from the planet tzemuna!!

regards & PF days,

Melvyn

Hi Dave. I’ve been reading this web site for a few months now and have seen your question come up from time to time. Many people have commented that it seems like meds can make a cluster longer. I think there may be something to that idea but I have no proof to back it up.

Drew_Va........I worked in substations for years. One of the great thrills at work was to go stand under the 500kV bus on a really dry day. Kinda makes ya tingle all over. Better yet, do it while wearing a nylon windbreaker and boots that have the soles nailed on! 

Lawmandave wrote on Jun 18^th, 2008 at 3:39am:


Some similar experiences. 

I was given pharmaceuticals during the mid-seventies that were largely ineffective (for me, I have to stress)--caffergot, Periactin, Sansert, and pain medications.  My cycles have always been remarkably consistent, except when I was taking certain meds.  Some of them seemed to make the thing go on longer, and some seemed to increase the number of hits, and the overall misery of the cycle.

As a result, I've become very conservative about what I'll use to "treat" the thing.  My cycles are getting farther and farther apart, without increasing in length or intensity.  Frankly, I'm afraid to mess with whatever unknown process is causing them to subside.

I've slowly and carefully added things to my regimen that (in my personal experience only) do not cause more headaches during a cycle, and do not cause the cycle to go on longer than usual.  Melatonin.  (Very happy with the results.)  Magnesium and Calcium supplements, along with vitamin B-6.  (Jury's still out on these.)  Energy drinks and coffee to abort shadows (works, but won't even touch a full-blown hit.)  I'm planning to add oxygen to my arsenal during the next cycle.

A very cautious and conservative approach won't work for everyone, I know.  I'm fortunate that my cycles are relatively short and infrequent, and that I don't seem to get hit as often as some others do during a cycle.  I can choose to simply endure the thing.  For those whose attacks are more severe, that simply isn't an option. 

Best,

George   

I've been on topamax, not for CH but for another problem. That stuff is nasty. My stomach felt like it was going a hundred miles an hour, I couldn't think straight, confused most of the time. After about 3 days I threw the crap away.
There are reasons the people here refer to it as doppymax.

Lawmandave wrote on Jun 18^th, 2008 at 3:39am:

There's quite a number of us who use no meds at all, Dave, and for exactly that reason.

This is by no means a reccommendation to others and I speak purely for myself but, during the decades I tried various drugs, they did nothing to stop an individual headache.  Certainly they'd give me temporary relief, only for the same headache to re-appear later (holding hands with the next one that I was going to get anyway).

On top of that, they messed with both my body and my mind to leave me even less capable of coping and dealing with the next one.

I now keep my body clean so the bastage can't fight dirty, but most importantly my mind is clear so I can face a warrior on level ground.  I do it as tough as anyone else, mate, but I do it on my own terms.

Cheers and beers,

Brian down under.