First off, welcome to where you and your boyfriend can learn a lot about everything CH related. If you can't find it here, just ask and people will try to answer any questions.

It'd probably be a lot easier for others to understand if it was called anything but a type of headache as from personal experience this just does remotely describe the pain they generate.

You'll find there is a lot to learn and with that knowledge you'll help your boyfriend regain some control, instead of being controlled by them.

You didn't mention anything about what medication he takes for CHs. Most people take a preventative, like verapamil, to cut down how many CHs we get and have abortitives, like oxygen, imigran, etc, to try to cut short a CH. Does he use anything like that?

Try to encourage him to read up on the information here too!

Welcome Jewels.  I'm a supporter of my husband who has had clusters well over 20 years.

How does he do it?  He keeps his head down and keeps going.  We have a rotating system of abortives on hand - like you've discovered not everything works every time.  We spend a lot of time reading and researching this beast.

I do a lot of pacing and whimpering and crying, and praying; out of his sight.  Battling the beast is his primary fight.  Fighting and advocating FOR him is my fight. 

We all get dragged down when cycles last long.  We all feel beaten up and scared and frustrated.  But we stick by our partners and do what they need us to do.

The mantra that keeps us going is "This is NOT fatal, live between the hits, and the the beast must NEVER win"

Read, read, read and arm yourself with as many abortives as available.  The fact that you are there for him means a lot, even if he doesn't verbalize it.  You (and he) are not alone.

Ginger makes a great point, if he is like me, normally the quiet, head down, whatever you say Doc kind of person, that has to change! CH is very rare, most doc's won't see a CH'er their whole career, and are dealing with knowledge that is up to 30 years old!

When you ask for oxygen he'll say first we have to to an oxygen saturation study to see if he needs it. You then jump up and yell bull shit that's not how CH'ers use oxygen! Then you have to push and demand at least a 15 LPM flow rate regulator with a non re breather mask after he tells you a 6 LPM flow with nasal canulas is fine!

Maybe you'll get lucky and get a knowledgeable neuro, at last count there were 7 on the planet so you might get lucky. But probably not. That's why we stress the importance of educating yourself, printing out the literature we provide that backs up our positions, and get ready to advocate against an uneducated, slow moving, medical system.

Bless your heart for being a supporter. If my wife hadn't found the original CH board so many years ago I'd still be snorting 4% lidocain and screaming a lot!

Joe

This is the first bad cycle he's had since I've known him.  And yes, it's sucking the life out of me nearly as much as it is him.  But I love him so I'll weather the storm with him and be there and listen and try to understand and spend hours looking for answers for him.  And I'll do it happily because he's worth it.  Thanks for being here, because as you know, and I'm just finding out, it's damn hard for us sometimes too.

Jewelz it's hard to add anything to what everyone has already said - but to repeat, knowledge is power. print out the info on 02 and the prevent treatments you've been seeing on the site. Take to his doctor and do go with him if he'll let you. Just ask the questions - "I hear oxygen is the least invasive and most effective way to abort a ch". Who can argue with you if you have the data?

As many have stated on this site, if the MD won't give you the prescription for 02, go find a new one. 

You've done good girl in coming here. We're all here to support your boyfriend - and you too. I know in my husbands last cycle I was reaching out to Jackie and Pat (mosaicwench) because Joe was getting hit hard despite his prevents. They both had ideas to share with me from their husband's experiences. That's what we do. We help each other help our sufferers, and we help each other cope in the meantime. From this site I've made friends I'll treasure for the rest of my life because of the journey we experience together.

Wow, did I just find something "Good" about CH? Well at any rate let us know how things go with him.

Christy