Hello everyone.  New supporter here.  My boyfriend has had these for almost 20 years but he's only had me for one.  He knows very little and I know less, but I know he needs me and I need to help any way I can.  I've been there when his friends have laughed at him for being a big baby who can't handle a little headache.  Telling him to take a Tylenol and suck it up.  Quite frankly, I don't know how I restrained myself.  God, I'm choking up thinking about seeing him when a bad one hits...

I don't know how he or any other sufferer manages to smile and stay positive with this demon in their life.  You people amaze and inspire me with your strength.

I just hope that by learning all I can that I can give him something he needs, some kind of help, some small comfort.  What does one say when someone they love begs them for help?  Pleads with them to make it stop?  Asks them how much longer?  Or tells them they want to die?  I'm sure many of you know how heart-wrenching it is and how helpless I feel.  I'd love to hear from you.

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!

Prednisone and verapamil worked wonders for him for the past few years, but seems to have become practically useless in the past few months.  That's how we found you.  I've spent close to 8 hours reading here today.  I've taken notes.  Something's just gotta work.

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.

Jewelz Welcome!  For your boyfriends sake I am glad you found us and what a wonderful supporter he has in you.

You've gotten some great advice and as you said you are now armed with notes from this site.  Have your boyfriend take them with him to his next Doc visit and if he'll allow it, go with him.  As suffers we sometimes forget things that should be mentioned and having someone else at the app. with us can be of help, not to mention the added support.

I commend you for being the wonderful supporter you are, we all need that at times CH or not.

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

Good morning, Jewelz, and welcome.  I'm also a supporter.  My husband has suffered CHs for many years.

You are doing a great job already.  Study and read all you can.  Knowledge is power.  You'll be his greatest advocate.

We're always around if you need us. 

Jackie

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.

The feeling of helplessness and uselessness can be devastating to a supporter.  We are only bystanders after all, and must watch our loved ones in the fight with the beast time after time and day after day.

Knowing as much as I can about treatments and abortives is the only way I can continue to watch the fight.  Knowledge is power - that's my story and I'm sticking to it.

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