I found this site for my husband through a Google search about a week ago...and I can honestly say that it has made a world of difference just knowing that you are all here to help. My husband, Danny A., has been suffering from what he knew as migraines for many years. He saw several doctors that all assumed he suffered from headaches/migraines and treated them as such with suggesting migraine over-the-counters and eventually Imitrex...which he took too many of and made his doctor mad. We found this site after going to Web M.D. and taking a few quizzes...that's when it started to make sense that this is what he's been suffering from. He's only had 2 or 3 CH cycles since we've been together, but now he's started a new cycle and it's the worst it's ever been...he wakes from sleep in so much pain that he pulls his hair out and smashes his head repeatedly against the shower walls....every night he takes a hot shower where I can hear him wailing in pain...he's had 1 night in the past 2 weeks where he's slept about 7 hours, only because he stayed up for the 24 hours beforehand. It's so stressful knowing that there is nothing you can do to help...I know I am helping him by staying positive and being supportive, but I'm afraid that I'm starting to suck at my job....honestly the lack of sleep and stress that this has caused on our family is wearing me quite thin....mostly because we have no insurance and the medical community in our town is short staffed for those who need low-income health care. We make too much money for state health care and too little for anything else. Danny will get insurance through his job in a few months, but he hasn't been to work in a week...and he's the only one working. We've been together for 13 years and have 2 boys ages 3 and 9. The toughest part is explaining to the kids why Daddy needs quiet and why he can't come and play with them...they see how much he's hurting and don't understand what's going on.

I know that things will get better, after trying a few medical clinics over the past few days I got a tip to call the local community health center before hours (she told me that they have to answer the phone even if they aren't open and someone will be there to answer my call) to schedule an appointment based on sliding scale fees. This is good news considering they told me to call at 8 this morning only to be on hold for 30 minutes while all the appointments ran out. At this point I'm just saying my prayers and making sure he's comfortable...until the beast hits him again. Thank you all for your support and keeping my fingers crossed for an appointment tomorrow!

Bethany, I too found this site for my husband, you'll see him around under the name Guiseppi.  The key for managing CH is having tools: something to abort the headaches that hit, and something to prevent them from happening until the cycle is over. For my husband, Lithium is the prevent, oxygen is the abort. Once in awhile the Imitrex but he doesn't like using it so he only carries with him in case he's caught somewhere that he can't get to the o2.

I feel your pain on the keeping the kids quiet and helping them understand that daddy's having one of his headaches. Been there! We all dread when the cycle hits  but we also all know what to do to help. The energy drinks help too with the "hangover headache" that he gets after, or sometimes gets before. The group here calls them "shadows". So, when I see him get his O2 tank, I get him an ice pack and a redbull. Then I leave the room but hang nearby in case he needs more.

O2 is not very expensive so hopefully the clinic your husband goes to will prescribe that. Take what you have read here, print it out, and show the doctor. By the way, what part of the world are you in? there may be someone else located regionally near you who can offer more advice about providers.

Best of luck  --- keep us posted.

Christy

We live in Springfield MO...thanks to the tip that the clinic employee gave me, I was able to get an appointment today! I called them at 7:30 this am and got him an appointment for this evening...more good news is that Danny actually slept for another whole night, a relief to him and myself...I've made sure to make notes in my cell phone about medications and helpful info to let the doctor know about. I like the idea of having "special toys" for the kids to play with, that way they'll be more stoked on the toys and less interested on Daddy's headaches. He still has shadows occasionally, but I'm also experimenting with water treatment for him...it's been going well, but our water is city water - even through a filter it's still pretty gross...still a small price to pay to not have headaches for a while...I'd rather his taste buds suffer than his brain ...I'll post again after the doctor's visit...wish us luck!
BTW, thank you all, you have no idea how much this experience has changed now that we have all of you and your support! 

Okay, we went to the local community clinic and had a nurse practitioner see him...I was ready to bring out all my notes and paperwork (aka the "Big Guns") thinking that she wouldn't know what we were talking about but to my surprise she knew her stuff - it turns out that her best friend suffers from CH which led her to study up on it to help her out. Because of the cost, she couldn't give us oxygen (low-income...ugh) but she gave Danny Imitrex and suggested phenylephrine nasal spray when he feels the shadows coming. He also was prescribed Prednisone 10 mg tablets to (hopefully) shorten his cycle.....today is the second day of his medications and things are going well...the nasal spray is doing a great job of keeping him from having any more headaches during the day and if he should get one at night, the Imitrex holds it's own against the Beast. He slept for a considerable amount yesterday, and aside from some heartburn, he slept pretty good last night. After a week of being unable to work, he's going back tomorrow...things are looking up! Crossing my fingers that this treatment stays effective until his cycle ends .

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Oxygen is, on a per-attack basis, MUCH cheaper than Imitrex.

Bethany.  Send me a PM here and I'll get in touch with you.  I live in Bolivar.  I will see what I can do to help you.  There is a good Headache Clinic in Springfield that I have been to.  If you can afford it, make an appointment with J Kent Dexter, MD.  Dr Cady is also ok, but Dexter is the guy I think is better for CH care.

I will PM you with my cell phone number.  Maybe we can chat and if you husband needs to talk, we can talk. 

You are not alone!