Hi everyone. I dont know if I ever posted here before. I made an account 2-3 years ago when I helped my brother figure out he had cluster headaches. He started getting them 8 years ago.. 2 years apart....... so 4 cycles.. the 4th one started up on the 7th of this month.
Since I helped him figure out what CH's were.. we figured his cycle and how long it usually would last .. like 3 weeks to 3 1/2 weeks of the cycle.. then a 2 year gap of nothing.
This time my brother went almost 3 years w/o a cycle.. then it just started up.... which coincidently is started up on his regular cycles which usually is in September ish.... well its been a harder cycle. Its been very crazy. He gets an attack 4 times or so a day... (which years in the past he would get like 2 and at the same times.. so he had an idea it was an average 2 a day) but this time its all over the place.. nothing is certain.. they go hectic!
My brother started taking the meds he took in his last cycle... kind of helped.. kind of didn't. Other meds he tried caused rebounds..... and thank God he got Oxygen prescribed yesterday and now has it.. it kills the attacks.. but its just beyond out of control... like they're coming all the time now. My question is.... can someone screw up the cycle by medications? Using oxygen... can you just irritate "the beast" by killing it ...and then it just going spastic and attacking now at random times of the day.... I mean... I have no idea why his pattern in this cycle is not a constant.
He's been so depressed and I have no idea what to do for him.
He's tried a lot of stuff to help him... but what if its making the cycle worse? He even tried the damn shrooms which last cycle in a sense it helped.. and his cycle died off within a week.. but this time... I fear cause he used the shrooms in the beginnin of his cycle.. he may have just made it worse.
Has anyone gone through weird cycle periods where nothing is certain? Is it always spurratic (is that how you spell that?) anyway... my intense fear is that his cycle can turn to something chronic. God willing it never turns to that cause he's had a pretty good schedule of every 2 year cycle.. but I dont know anymore.

Any advice, experience, would be greatly helpful. I just cant' stand to see my brother going through this. He has his first kid on the way and his job right now is at stake cause the cycle has been so bad... I dont know what to do for him.  :'( 

Hi Monika,
First off relax, I am pretty sure no one has done anything to make them worse. The cluster headaches change like this all the time... and our first instinct is to try to find out why... to blame something. That instinct does a disservice to us and our supporters.
If he has tried the busting method (shrooms) and the result was the headaches going a little haywire... that is considered a good sign... means he is getting to the beast. What he needs now is to continue.
I urge you to go to clusterbusters.com for discussions and advise on this. There is a lot of information over there to help guide you both through this. Those damn shrooms have saved more lives than the doctors so far, and is only in a league with oxygen when it comes to effectiveness without side effects.

What Nolan said! There are some members of this board who feel certain meds, especially the imitrex family, extend cycles. This is all anecdotal with no real studies to back it so it's still anyones guess.

If he has had success with "busting" in the past, follow Nolans instructions and visit our sister board. I just got home from the annual clusterbusters convention in Vegas. As usual the susccess stories from busting are mind boggling.

That being said, you mention he is "trying" meds, is he working with a doctor this go round? So many of the meds we use for CH are High Horsepower, and it can be risky to go on and off without a doctor supervising.

As to the cycles changing their patterns, that's par for the course. One of the cruelest aspects of the beast is how he morphs everytime you think you have a handle on him. Attacks will switch sides, cycles will lengthen and shorten, the same with remissions. It's one of many aspects we don't understand.

Thanks for supporting him, our supporters are considered gold around here. Any chance you can "nudge" him onto the board? ;)

Joe

OK, now a more in depth response...
CH - just when you think you have it figured out it will change on you. If you spend a little time reading through the posts here, you will see this story repeating its self over and over. Never had a problem at night... but this time I can't even lay down without getting hit, for example. The best thing you and your brother can do is read a lot here and keep asking questions. The more knowledge you have, the easier it gets.
This site is more dedicated to the conventional treatment of CH. You really need a specialist in your corner... not just a neurologist, but a neuro that is specifically a headache specialist. The average neuro only gets about a 15 minute mention on cluster headaches in school. The usual approach is abortives (imitrex shots not pills and oxygen) to handle the attacks. A preventative (verapamil, lithium, topomax, etc.) to lessen the frequency and severity of attacks (usually doesn't prevent the attacks completely). And a transitional medicine (steroids usually like prednisone) to fill in the gap between onset of cycle and when the prevent builds up in the system and takes over. As you and your brother have found, the meds are not without their problems. Some people get no side effects from the meds, others just can't take some of the meds at all. Rebound headaches from triptans (imitrex) is common, more from the pills than the shots. You will find all the help you need here with the conventional approach.
Clusterbusters.com is more geared toward the unconventional or alternative approaches. Like I said before, the beast is known to kick and scream a little when you poke him with the tryptamines (shrooms, LSA, LSD). Considered a good sign because you know you got to him. If your brother decides to go that route there is much to learn on that site as well. Someone needs to get up to speed on all of this, and if he is unable or unwilling... if you do it I will personally nominate you for the angel of the year award. My sister found this site for me and it saved my life more than once. Thank you for caring.
Todd

Cluster is definitely sporadic 8-) by nature. You'll get some relatively predictable cycles and then along comes a nasty one that just won't seem to respond to what usually has worked. You gotta learn to roll with the punches and change your game plan on the fly some times. Have a back up always, and a back up for that.

As a mother, nothing breaks my heart more than when there is nothing else I can do.  One thing I do not see mentioned, so far, is that it's all about trial of just about anything.  Some things work for some people and not others. Some things work for a while and then stop working.  Adam had a doc in Florida that put him on a med (can't remember the name of it, there have been so many).  It completely stopped the attacks for 4 months.  Then they were right back.  This was several years ago, maybe 10-12.  So, when he saw his new neuro here, he put him back on it.  All it did this time was ramp up the attacks.  Fortunately, for some, they find something that works for long periods of time or forever.  For some, it just becomes a continuous trial of one thing after another.  We have been doing this since we finally discovered what a CH was.  Just hang in there and know that this is the best place in the world for a sufferer and supporter.  Don't ever give up on your brother, yourself or those of us here.  If you ever need another supporter to talk to, PM me your phone number and I will be happy to spend time with you in anyway I can support you.  By the way, what part of the country do you live in?  You may want to check the "where we live" site at the left.  See if there are other people in your area that you might be able to get together with.  It  is amazing how much it helps to meet people who are going thru the same thing.  It really lets you know that you are not alone in this. 

PF days to your brother and you.
Louise