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.  

The only med I had that experience with was the imitrex injectables. I'm never entirely sure of "cause and effect" as this damned consition morphs so often. The last cycle was the first time I tried imitrex, the cycle went almost 8 months after never having had a cycle go past 16 weeks. I'm going to try and battle thriough the next cycle with only 02, energy drinks and my lithium as preventative, and see if it makes a difference by not using the trex. Not terribly scientific by any means but I am curious to see if it makes a difference.

Guiseppi

PM me with what type lawman you are, as am I!!!

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

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

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.

Hi Dave,

Not a stupid thought at all. Bring 'em on, that's why we are here. Someday, somebody is gonna say something that will be an aha moment, that's what I believe anyway.

Some comments:

Intellectually I KNOW the beast is NOT a live entitity. It's a "dodgy hypothalamus" as our Brit friends would say. Emotionally, oh dear, 26 years of this and "evil intent" seems evident. Too many times of what you describe.

There are some convinced ( I don't dispute, I just don't know) that some remedies MAY increase or prolong hits/cycles. Among these are triptans and/or verapamil. Actually, my neuro has just reduced my Zomig NS script because she believes "too much" (she says more than 2/week will result in increased ch). Not happy about that (it has been a savior) but she is WAY smarter than me.

Now, this one is a complete puzzler to me. When episodic I had more problems with depression and constant preoccupation with ch than I do now as a chronic. I fixated obsessively and could not get it out of my mind. As a chronic, I find myself much less preoccupied and actually feeling better more often (many chronics will concur). YET, I would STILL rather be episodic. Go figure, I CAN'T...

PF wishes,

Regards,

Jon

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've found that you have to try your remedies separately and give it a few days. i know its hard but you have to be patient. o2 seems to be a common denominator amongst us clusterheads.  

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?

Lawman,

My simple answer is what you are describing is either the way CH works (increasing in intensity and longevity of cycle with time) OR the meds are doing it.  My cycles have done the same, as well, with time and meds thrown in.  However, I do find them way more bearable as whether O2 or imitrex causes increase in hits I still find it way better to use them than not (although I use imitrex very sparingly)!  
CH does work in weird ways though in and of itself.  One neuro told me something to the effect of that the shorter the hit the more painful the headache (in general--I have had a few exceptions there).  So sometimes with the beast, it does kind of seem, that it is determined to do what it is going to do, somehow, by being as annoying as possible.
I am wishing you painfree and that your cycle will END soon.

PS.  Are you set up with the right O2 setting?  Check the O2 info.  It has to be at the right setting or it will not abort the HA (learned that one the hard way.)

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

Starlight,

   Just got on 02 because I tried it in the past w/ no success but thanks to that link and this site, I learned that I the particulars all wrong!  I finally got it right and for now, its seems to be working great!

Dave

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 :)

Ditch the hats guys. I work in a Power Plant and regularly go stand by our 14 kv breakers to try and abort my daytime hits.  ;D ;D ;D

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!  :o

Hey there Dave,

mine are increasing as well. o2 nd Stadol NS. The very best pain killer out there.

I have taken everything with no relief, one thing is for sure, we as in all of us NEED something that works FAST.
Stadol is flippin FAST, highly addictive but works




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

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.

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

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.

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  

Have any of you had bad side effects with the topamax? Problems with your stomach, digestion, etc? Is this something that will change as he gets use to this medicine? It was so so so bad the stomach pain that he stopped taking it.

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.

thanks bob - i swear last saturday i thought i was going to have to rush my bobby to the er, he was completely white, sweating profusly and telling me he felt like someone had been continuously kicking him in the gut. i'll just keep him on the verapamil and 02 and hope that works.

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

...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?

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.