Hello judgie!
If you get time before your dr's appt, read read read! There is so much stuff here you will be able to discuss with him to get whats right for you. In particular look at the O2 info and also the kudzu threads.
Let us know how you get on okay?!
Helen

Thanks, I'm going to run to the health store after work to pick up some kudzu - even if it helps a little bit that's better than nothing!

Well, picked up some kudzu yesterday so we'll see if that helps.  Also had a Dr's appointment today and got a perscription for Prednisone and O2 so with any luck that will help me ride out this cycle.  Thanks for all of the info!

I guess I'm lucky, my cycle only lasts for 4-5 weeks (3-4 CH per day), then disappears for 1.5/2 years.  So I'm a week into the cycle and the Dr said the Pred was 3 weeks worth, so if all goes well I should just about make it to the end - that's if the Pred works. 

It's so hard going to a new med, it's the whole trial and error thing, and in the meantime you're suffering.  I've been trying Topamax for the past 4 days and it hasn't been helping so hopefully the Pred will do the trick.

I'll be more than happy to add to the kudzu survey, although I'm not sure if the kudzu or the Pred will be effecting my symptoms.

Well, just registered, so hello friends and fellow suffers.  It is good to be talking (typing) even if noone is hearing.  Just to know there are so many out there who can understand.  I guess there is nothing like CH to bring home the truth that misery loves company.  Here is my short history:

Started having CH about 12 years ago.  I just sweated it out and did not really get properlly diagnosed for about 4 years.  I finally got referred to a neruologist who positively identified me.  I was relieved and then shocked to hear him say, "we know how to label it - we know the symptoms, but we don't really know what causes it, what it is, or how to cure it."  I did not think there was such a thing in the modern medical world except rate diseases.  It is still strange to think they understand so little about the cause of CH and so little about the cure, though I have learned much from this site about possible treatments.  I am (please, God) just coming out of a cycle I think and I owe some peace to this site.  I read and tried the www one week into my cycle and it seems to have worked (I have a bottle of water right beside me now to make sure I am OK).  It was difficult being by the bathroom all the time for two days, but a small price to pay compared to meeting the Demon.

Question: anyone know how long I should keep drinking the water?  I still have a few shadows, but seem to be mostly free.  I am, of course, afraid to stop and have CH come back suddenly.

Question: I am struck reading the site about the wide use of 02 as an abortive.  I had not heard of that, nor had any doctors mentioned it to me.  What is the easiest way to get a set-up.  I would certainly like to have one handy when the Demon comes again.

Guess I will stop now.  This is probably a lot for anyone to read.  I am curious about how this group investigates potential causes or atributes that we may have in common that could lead to more understanding.  For example, for many years I thought that the CH might be related to a head injury I sustained about 1 year before they began.  I noticed that in the medical description of the site this connection has been explored but was not conclusive.  How many of us have had such injuries?

Thanks for the welcome Nani.  I thought I was coming out of the cycle, but just had a KIP 9+ yesterday.  Now I have started the Predisone and gotten some Imitrex injection medicine to abort if (when) the beast comes tonight.  Still hoping I am over the worse....

Hi samsara (my granddaughter's name's are Samantha and Sara      )
DJ started this site and we are all very grateful to him for that. I'm sorry you're having a bad time. My CH has been kind of erratic like yours. Also a long story.
You have found a place with tons of info and support. Take advantage of it.     Pain free wishes, nani

You know, that sounds like a great thread to start on the General board. There is the getting to know you board, but not everyone posts there first. There really isn't anywhere else (except some of the guest book posts) specifically for our stories. Why don't you start one? 

Thanks for a great site !

Have suffered from what I have discovered (thanks to this site) to be the cluster headaches for around 15 years. It was so much of a relief to find what I had been suffering with.

Have been treated for various things, including sinus problems for years. As you can guess, with no luck ...

Soon as I found this site I printed out the the basic symtoms, made an appointment with Doc's, and presented him with the evidence, and he prescribed imigran injections, which work great.

Many thanks to all who make this site such a great reference for myself and fellow sufferers ...

I just wondered if if these headaches can be linked to any neck or upper spinal injury, as I have suffered more and more attacks since having such an injury, and the treatment of this injury mainly after physio on the affected area ?

Again many thanks, and keep up the good work !!!

Hello, everyone!  My dad asked me to look at this site because he's been having these headaches for about a year now.  He says that everything that is talked about here fits him to a T.   I just wanted to say Thanks for all the great info and I hope he can get some better help now that he has more of an idea what this is.  Before he started getting these headaches a year ago, he had rarely, if ever, even had a little stress headache.  I have dealt with Migraines since I was about 16 and my youngest son gets them and can't go to school sometimes.  My sister gets them too, but Dad's are the worst.  He has the highest frequency and by far the worst pain.  He is a double above the knee amputee as well, so walking and such isn't really an option for him, but I have gone over there and watched him pull himself from his bed to his chair and back and moaning and crying and shoving his palm into his eye.  It's horrible and I really hope that by using the information he has found on this site and showing it to his doctor he can find some relief. 

*huggles*

Kikat

Hi Everyone,

   I am in week 3 of an attack.  Things are not going well at all.  The doc prescribed verapamil and RELPAX.  I have had these for 30 years and they never get easier to accept.  I got the above meds at week 5 of a cycle last fall and it seemed to zap them away,,, but now,,,,the verapamil is not doing anything that I can tell and I had to quit taking the RELPAX because it was causing my moderate to severe chest pains.  I am 47 yo and am HAPPY to have found you all.  It is about 3:00 AM here in AZ and last nite was the first nite without the RELPAX.  My headache has been bouncing between a 4 and a 6,,,, and at times going to 8 or 9.  I am so very tired of this.  I just don't have the fight in me anymore.  I normally only have a bout in the fall and on the left side.  This one is on the right side and the attacks are sudden and acute.  Thanks for listening to me.  The most succesful things I do are relaxation,,, oxygen and ice.
Larry

I just joined this site today. I wish I had known about it years ago. I'm an extreme chronic clusterhead. I'm in the 5th month of a 5 cluster a day cycle. I'm totally worn out. I feel the most sorry for my family. The docs are sending me to a surgeon, any info on that ?