Hi!
My husband was just diagnosed. I have never seen someone in this much physical pain before. I thought I was watching him dying in front of me when I saw it happen. I am terrified for the pain he is going thru and feel totally helpless. He only has Healthy way LA which is a county insurance, and I am grateful that we have even that but it is so frustrating that they say the next available appointment to see a primary is October 25th! We were prescribed imitrex shots and Zofran, which thank god I am having some help to pay for it this time. I welcome any advice that you can give. Thank you for sharing your experience. It is comforting to know we are not alone. -Lori

Hi and welcome.

Great supporters like you make a huge difference to anyone with CH, so you're far from helpless when he is in pain (which we know too well).

You're somewhere where people understand what both of you are going though as everyone here either has CH or supports someone with it. So any questions you have, just ask.

Whilst the next appointment is a while off, try ringing up for cancellations and last minute availability. It might get him seen sooner.

Do take notes about his CHs, like pain level, time / date, duration, symptoms, etc. It can help.

Imitrex shots will kill off CHs but they are not cheap (as you've realised). What work really well and is a lot cheaper, is oxygen. Read about it at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . I can kill mine off in about 5 minutes using 25lpm and a non-rebreather mask.

I'm not sure what the Zofran is. It appears to be good for anti-nausea, which isn't too common with CH.

Also he will need a preventive, to try to cut down how many CHs he gets. Verapamil or lithium are good for this, with a taper dose of predenisione as a short term preventive whilst the main preventive has time to build up.

Now start reading like mad and learn all you can about CH. It really makes a difference.

Supporters for President!!!

G'day Lori, and welcome. One of the very good ways to help is to sit with him when he's perfectly ok, hold hands, and ask how you can best help.

I truly beg you not be offended if he says that during an attack he wants to be left entirely alone. Many, many of us are like this  (Touch me, I keel you!)  but please don't take it as rejection. There's other things happening and we never mean it like it sounds.

Running interference for him in public or amongst family, ensuring there's coffee and ice packs on hand, checking and double checking his medications and simply respecting his hell can make make so much difference.

Otherwise just keep doing as you're doing, learning all you can about this dread disease because knowlege is power, but it's also terrifically important you take time out for yourself.

Lori time.

Go out with friends, get your hair done,  do good works for others. It's a beast we deal with but it can't be allowed to destroy lives so just talk your man. He'll likely respect you for it.

We do.

Thank you so much Brian. I have been giving him space during attacks. I know he needs to fight that part of the battle by himself. Its so hard going to work each day knowing that a few hours after I leave his hell begins and doesn't let up for hours and hours. I have gotten him the vitamins recommended and I am scrambling like hell to try and get him oxygen and the right meds. Not having proper insurance and easy access to a doctor makes it a bit more difficult but NOT IMPOSSIBLE! I will not let these clusters destroy his life or mine. We may have to learn how to deal with them but I will fight till my last breathe to make it easier on him. Thank you again Brian!

Hello Lori,

I've not been near this site for many years - for reasons that are unimportant and have nothing to do with CH. My name is Denny - not short for anything - and for more years than I care to think about have been Aussie Brian's supporter.

There is no easy advice I can give you beyond just being there for your Jon. I understand completely why there are times when his suffering sends you into a corner to sob your heart out because you feel so helpless. Then again - there are moments when the frustration gets on top of you and you just wish you were a hundred miles away and the huge guilts that follow make you wonder about yourself.

Lori -your man is all important and he needs you - just to be there! Try and imagine the boot on the other foot. (ie - you the sufferer - Jon the supporter). Where would you want him to be?

At the same time - please don't let CH run your lives. This is not easy! Sometimes it's hard to believe in the light at the end of the tunnel. Medications that work for one cycle may not necessarily work for the next. Many sufferers have found relief from oxygen (O2) but the availability can be a problem - depending on where you live.

Lori - we are all on your side here. Now that I have regular computer access I'll be logging into this site more often - hopefully. So please, please get in touch - if only to scream! Do it here, rather than upset the neighbours!

You & Jon are in my prayers. Love & Blessings
Denny