This is all new to me, people who understand and message boarding, so forgive my ignorance in either area.  After suffering for 19 years, the first 12 of those undiagnosed, I have to express an intense sense of gratitude just having found this site.  I tried visiting several Drs, who tried various things, such as muscle relaxers, x-rays, diet, cat-scans, and not one who can identify or give a name.  It wasn't until after I married my wonderful wife that she went on-line and found a name for it.  I found a Dr shortly there after who knew what they were.  

I am extremely fortunate that I have 2 year remissions, with scattered shadows.  Back in the summer of '05 my Dr prescribed Verapimil, which I reluctantly took.  No desire to take anything daily.  When I stopped taking them in the winter, they came back at the same level of intensity as when they stopped.  I suffered through like normal and then went into remission.  Interestingly enough, they did not return in the summer of '07 as I expected, nor did they come in the winter as I thought they might.   Has anyone else heard of that effect from Verapimil?  I also started seeing a neurologist who recommended changing my diet as a preventative measure.  No alcohol, caffeine, smoking, I avoid those things normally, but also, MSG, soy, nitrites, aged beef, CHEESE, and CHOCOLATE!!  My arguement was, I eat this stuff all the time during remission and I'm not getting the headaches, so it can't possibly help.  It hasn't helped to prevent the cluster headaches, but I think that there has been a benefit in reducing the shadows and some of the side effects I traditionally experience leading up to the time of the attacks.  Not sure if it is really the diet or just this season is different.  

I realize this is lengthy, and I hope didn't lose anyone.  Mainly I wanted to express my gratitude for having a place to go when I'm emotional or I have gotten more advice on "what works" for other people who have no idea what cluster headaches are.  I appreciate the intent behind it, just hard to listen to sometimes.  I have gotten some great ideas from this site and my previous paragraph was in an effort to share some of my own stuff in the hopes it helps someone.  

Thank you for your time, thank you for your advice, thank you for your understanding.  I feel guilty to be grateful I don't suffer alone, so here's to hoping for no new cases, someone finds a cure, and many PF days until they do.

Try oxygen it's a darned miracle.  Eat more beef I need the income.

         Potter

My neuro told me to stay away from the same things, but I do have a microbrew craving in remission as well those other foods.  I just recently found on here that caffeine helps some during the onset.
Hats off to ya for being in remission for so long.  I usually have 6 month remission periods.  Belive it or not, my family doctor identified my clusters and sent me to a neuro whom I don't go to anymore.  I'm highly against those medications (or the Topamax) other than imitrex which I only use to abort since I know almost exactly when the demon is coming.  I take 50 mg an hour before kickoff time.  Quitting smoking 3 years ago was also a savior.  It decreased my bouts and CH's per day by more than half.  I'm new here too and it feels like home  :)

I'm convinced, I'm going to get some oxygen.  I just wish I had started sooner, not looking forward to the weekend.

Triggers for me are alcohol, getting really hungry, sustained stress, or screwing up my sleep cycles. That being said, triggers are only triggers when I am "On Cycle." Off cycle I enjoy my dark beers, my blended whiskeys and scotch, with no fear of the beast.

GET THE OXYGEN!

Just suffering through the weekend, then I'm going to be hounding my Dr for some O2.  I also think I'm going to be looking for a new one.  It seems like many of you have Drs who actually know what they are talking about.  I still argue with my Dr about what hasn't worked previously.  I may be her first Cluster Head.

CH Keith wrote on Aug 9^th, 2008 at 4:45pm:

It seems like many of you have Drs who actually know what they are talking about.

Most of us went through a lot of Dr.s before finding one that knew anything about CH. And still, a lot of people here had to educate their Drs.
CH is very rare. Chances are pretty good that you are in fact the first Clusterhead your Dr has seen.

Welcome to the board.

Is there a fire station near you?? They have O2. It's worth a try if you know a hit is coming. I recommend printing info about O2 treatment for CH and bringing it with you.

Guiseppi wrote on Aug 9^th, 2008 at 12:43am:

Triggers for me are alcohol, getting really hungry, sustained stress, or screwing up my sleep cycles. That being said, triggers are only triggers when I am "On Cycle." Off cycle I enjoy my dark beers, my blended whiskeys and scotch, with no fear of the beast. GET THE OXYGEN!

Gosh, you sound like my clone.  Nothing better in remission to have a some good beers and an aged scotch. :)

Fire station is an interesting idea.  I'll have to try to make friends at the local station.  Thanks for the tip.

Yes, make friends with the guys at the fire station BEFORE you need them.  Nothing worse than coming in, in the throes and scaring the hell out of them.  lol

When you talk to your Dr. about a script for 02 please make sure you tell them you will need a regulator that goes to AT LEAST 15 lpm with a non-rebreather mask.  If the dorks at the medical supply palce give you the cannulas, as they sometimes do...I will send you several non-rebreathers.  The cannulas are worthless.

Linda

Linda interestingly where I get my O2 they said they could not give me a mask without a prescription.  Of course I have masks at home, but went ahead and took the cannula and had at my office along with a couple of tanks (at this time I was not gettng hit that much during the day) but sure enough the beast tricked me not awful 6-7, but my nose was not totally stopped up so inserted the cannula blocked one side and squeezed the other fairly tight and inhaled fast as I could and exhaled through my mouth.  Darned if it did not work.  Took about 15 minutes, but really in about 5 the pain had subsided to a level as we all know you can live with.  I was shocked.  Dumb me forgot a mask the next day and same time happend again and once again I tried same tactic and got same positive result.  I did slug a RB both times and I am sure this helped as well.  Now don't get me wrong. I now have masks at my office, but I just wanted to through in as a last resort if all you have is a cannula and you can breath through your nose they can work.  Now you will almost hyperventilate because you are having to breath so hard and fast through your nose to take in the O2.  If ya'll will please hang with me.  After this I got on line to order another mask. Saw one, it was rather expensive $55., but the mask on this site is expensive and I like it and it works fine but don't like the rubber smell, so I said oh well as much as I am getting hit I need another good one for the office so I ordered.  A few days later I was in a conference and saw my assistant walking by (conf room is glassed) with a fairly large box).  After the meeting I went to my office and the box was in my chair. I opened the box and dumb me had ordered 50 cheap masks.  The picture of the mask was against a black board or something and looked completely different that what I got.  So to all be careful.  It works but the mask is so flimsy that it is hard to get a good seal to prevent outside air.  Not to difficult if only a 5-6 but if a big boy not much good.  Sorry to bore you guys but a good joke on dummy here.  Better to smell the rubber.  Wishbone.

Thanks for the info on the masks.  I wouldn't have thought of the multiple mask risk.  They originally wanted to give me the nose things (cannulas?), but I told them I need the non-rebreather mask.

Keith

This looks like a good thread to post my technique once more. I hope you give it a shot. It's cheap too.  8-)

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

I'm willing to give that technique a try.  I've been experimenting with a lot of new tips and suggestions.  I can see the logic in the idea.  

This cycle is different and a little concerning.  I thought I was done, but I'm getting a lot of shadows.  In previous cycles, I would get a ton leading up to the cycle and then a few after.  I usually have 2 year remissions, but I got a third this time around.  A little worried that this cycle, which was shorter, was just a lead in to the real deal.  

I'll be reading all the tips I can get and hoping for the best.  The main thing I'm tking from this site is you never know what you are going to get and how the beast will change it's tactics, so I'm hoping for the best and stocking up on O2 and energy drinks.

Thanks for everything.  Many PFDs all!

CH Keith wrote on Aug 22^nd, 2008 at 8:05pm:

The main thing I'm tking from this site is you never know what you are going to get and how the beast will change it's tactics, so I'm hoping for the best and stocking up on O2 and energy drinks.

And that my friends is why we do this  8-)  Keep your powder dry Kieth!

Thanks DJ!

-Dennis-

im new to the site, but have been dealing with CH's for about 5 years. it wasnt even until recently i had somthing to call my horrible "headaches". it feels good knowing theres other people that cope with the same thing i do, and have techniques and Dr.s to help them. im going to try and get my hands on some 02 because i eat way way too many excedrin... with little relief.

Hodgeman, a fellow cycling enthusiast, welcome to the board! ;) Now get your butt back up to the top of this board and start a new topic entitled something like, New here saying hello! Otherwise too many people will miss your first post and will miss out on getting to know you.

In your post, tell us a little about yourself, your diagnosis, what meds you've used that have and haven't worked etc. we're a nosy group and want to make sure you aren't missing out on anything that could help you.

A big warm CH welcome from the board, glad you found us, you'll never have to be alone with this sh%$ again!!!

Guiseppi