I too am new to your blog and have read so many wonderful things that you have said on behalf of your partners suffering from this debilitating disease that only the devil himself could have started.  

My husband, Bobby, 44, is a CH sufferer and has been for the past four years.  He's a wonderful, strong, caring man, husband and father, who I can't stand to see in pain like this.  I have spent hour upon hour doing research on these stinking things.  I've prayed for God to take them away and give them to me, nothing has worked to date.  I feel like we haven't slept all the way through the night in about two weeks now so bear with me, it's no where near as bad for me as it is for Bobby.  But he keeps pushing on, daily, he plays in a band, he's a drummer and he goes every weekend and does that.  Somehow he gets up every day and goes to work, I'm unsure how but I keep telling him we can beat these and as GOD as my witness I will not stop until everybody can rest and live without these.

Bobby does scare me when he talks trash about what kind of life is this, just take me -  I won't allow that to happen.  My best friend did just that in 1994 becaue of these headaches and I won't allow this kind of trash talk, obviously because he knows of my friend he won't talk like that around me.

We do have a wonderful neurosurgeon, Dr. Mody, who has been a godsend.  He gave Bobby a script for an Oxygen generator which is housed in our basement which provides immediate relief to this man and now we've just been given approval for a portable tank so that he can try to go on vacation.  YEAH US!! WISH US LUCK!!

I have Bobby tested about 12 years ago for Sleep Apnea, I was convinced that he had it but the doctors told me no and looked at me like I was just trying to stop the snoring.  Well, I have documented I know over 500 CHs now and I began to notice a pattern regarding his REM cycle.  Well today I checked on a group that they've been working on at the Mayo Clinic and found out that 80% of the people in the CH group were found to have Obstructive Sleep Apnea (OSA) and that once they were cured of that these headaches just seemed to disappear?????? Can you believe this? So I called his doctor and we are going back AGAIN!

I've convinced him now that he will move that tank upstairs next to our bed and that he will sleep in our bed and he will put the O2 and fall asleep that way.  God love him, he's worried about me losing sleep, worried about the tank being too loud he says, worried how much longer I'm going to stick around with this LOSER as he calls himself.  He's not a loser and I keep reminding him that our vowels included IN SICKNESS AND IN HEALTH and I will not ever let him forget that.

I refuse to give up, I refuse to let these get me down, I will find a cure if it takes me to my last breath.  Be strong, stay strong and love them, always love them.

Thanks so much for listening to me ramble and thanks for being here for me!!

Brooke

Hi Brooke....welcome.

Please check your PMs.

Hang in there, Sweetie...
Jackie

Hi Nani - Thank you but I've mislead you actually it's not a tank it's an oxygen concentrator, no filling, etc. so it can't run out thank god. Now the portable one will so I won't let him fall asleep that way on vacation - thanks for the heads up i certainly appreciate it.  I'm not sure by what you mean by a "non-breather" but it does have holes in it?

that's exactly what it looks like and i have to tell you the past two nights have been much better for him, he's rested and feels like a hundred bucks in his words, which to be honest is great news for him and for the rest of us.  i just hope that we are out of this cluster soon enough - i'm worried about our vacation next week - pls pray for him

Thanks Kevmd, me and your wife should get together and share stories sometimes.  We are just back from Myrtle Beach and it went well, obviously they didn't stop, that would have been a miracle right? He's had to use more imitrex shots lately and is weary of them for some reason. I keep telling him that it's okay just think of it as taking a pill but i think he feels like a druggy with the needle and all. Wondering if that will ever change but the portable tank was great - wish it lasted longer than what seemed to be only 15 minutes so i'll be checking in to that on the next refill. 

But, have you ever had your "sleep pattern" (if that's what you could call it right?, i'm not trying to be funny really) anyway, thrown off and gotten more attacks then what you are use to?

I also am new to this board and am in desperate need of some help. We live in Indiana. My husband of 30 years started having cluster headaches a little over 2 years ago. he is a chronic sufferer and has had no remissions or cyles. there seems to be no pattern or triggers to them, he suffers on a daily bases. He was seeing a Neurologist that didnt know too much about cluster headaches and wasnt helping him much at all. I had to actually print off information from this website so he could take it to his Dr appointments. The meds he is currently taking are Verapamil, Topamax, Inderal, Depakote and Imitrex Injections. I did a little research and I found another Dr in the area that knows more about these headaches. This Dr wants my husband to go to a hospital for a 21 day stay that is in Ann Arbor, Michigan to have a surgey done to try to put him in remission or help him to start having cycles. Has anyone heard of this place or what kind of procedure it is? My husband says he cant remember the name of the procedure. I guess it doesnt matter anyway because I just found out yesterday that his insurance wont cover this because it isnt in the network. I cant even get this insurance company to cover all the injections he needs for the month. I am really worried about my husband, these headaches are taking their toll on him physically and mentally he isnt the same person at all, he is constantly saying just give me a gun I cant take it anymore. I just dont know what to do or where to turn, I'm hoping someone here can lead me in the right direction before something terrible happens. I know I have probably left information out , so if anyone has any questions please let me know. Any information would be greatly appreciated.

Hi, Brooke
Thanks for your reply to my message. No he hasnt used O2 except in the hospital and he said it didnt work. I tried explaining to him that the rate he was getting wasnt high enough to abort his headache. I told him everything I have read on this website says it works wonders for most. He isnt good with computers so any information I get I print and let him read it for himself. I let him read what you said about the surgery and he wants me to do some more research on that. Is this where I need to be to get information or should I be posting somewhere else? Thanks, Kathy