Next month I will have had Chronic Cluster Headaches for 6 years and it is over a year since I had a whole day without 1 CH. The oxygen doesnt work as well as it used to the endless changing meds dont work properly and the last straw was xmas. My mother has always been very supportive but my brother and sister are both wastes of spaces. I am in pain about 18 hours a day minimum because of the CH and so obviously my mood isnt great. On xmas day after listening the same xmas cd since 6am I asked if it could be turned off for an hour during dinner at 2pm and was moaned at and called a drama queen. Then after dinner when I said I was knackered and wanted to go to bed I was told I had ruined xmas and that there was no point in me being alive as I am just a hinderence to the family. This has got me thinking that my family would probably be more free if I was dead, although my mother would not ever admit that I do believe she thinks it at times.

Tough place to find yourself in. About 3 and a half years ago oxygen began to lose it's effectiveness at aborting for me. I had a demand valve so there was no issue with the delivery system, it just stopped working. A friend of mine on the board, Batch, suggested I try an anti inflammatory regimen which messed with my PH balance, making me less succeptible to attacks. In less then 36 hours the 02 was slaying the beast again. The cycle ended shortly thereafter, and I have been cycle free since. This regimen has been modified and is now referred to as "The Batch Regimen"

Follow this link  to the medications section of this board and read the post "START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH! Of those responding to the survey, well over 70% are showing great results, with many, like myself, going pain free.

Re-read this link just to be sure you're getting the maximum benefit from your 02:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hang in there, this condition is tough enough, not being made any easier for you with a family that doesn't get it. Hang in there. [smiley=hug.gif]

Joe

Please don't think that way. I'm sure a lot of people on this forum have felt the same way at some point or another. That amount of daily pain is unimaginable for me, someone who suffers from cluster headaches and it is even more unimaginable for someone who does not understand the pain at all.

You are not a waste of space and should never, ever let anyone else let you think that you are. Suffering from cluster headaches has made you a tougher person than both your brother and sister.

Wow! I thought I had it tough with my family. I can't begin to imagine what its like to be chronic. I myself, have recently gone into remission. What kinda #'s are you having? Its my understanding that chronic sufferers have less intense attacks, but they are daily with the occassional "beast". I'm not chronic. When I get hits, they are 6 and above. Most of which are 8-10's.

My last hit was an 8, and it occurred on Thanksgiving. I had just arrived at my parents house at a full-blown 8. My mom (who is clueless about CH's) did all the things we DON'T want when are getting attacked: asking me dumb questions, touching me, and just being near me.

I know she is only concerned about me, but I had the feeling that she felt that I was faking. Once I sensed this, I just wanted to leave. I understand your pain(s), hell we all do. Please don't let these CH's take control of your life. I know, I know......that's really easy to say when you're in remission. We MUST remain as positive as possible because, that's all we got.

It is often asked here ' Would you ever wish clusters on your worst enemy?'
My answer is 'Damn right I would.' To that I'll add "and on some family members."

Bob, in the height of my cycles and being subjected to stupid comments.....yes I agree with you. However, when I regain my sanity, I must disagree with you. Would I like them to have a taste so they can truly understand.....of course. The problem is, they would have a 30 min- 1 hour attack and know that their "taste" is over. One can only grasp what its like to live with CH's by suffering 2-3 cycles. They would need the "fear" mental aspect of this ailment.

Through my experiences with them, I wouldn't wish these upon anyone.....including a sworn enemy. The pain is just too great for anyone to have to suffer.

Listening to the same Xmas CD non-stop is enough to send anyone crazy, so no wonder you wanted it turned off or changed. That would be the case even without CH.

And you're not a waste of space or anything like that. Just how anyone can tell someone that is beyond me.

If oxygen isn't working too well, have you tried any other abortives, like imigran injections (Imitrex)?

trust me your mother would never feel that way. I have watched my husband for 12 years deal with these monsters currently immetrex inhaler 20mg take them away in about 5 mins. they are expensive, but to us worth their weight in gold.

I hope that in some earlier message I encouraged you to contact your excellent support group for some guidance in finding good quality treatment. Outfit worth you attention:   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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But, to your message: betrayal by our family is surely one of the great hurts we can experience. The problem is that, holding onto our claim for their love/caring/attention sustains our pain.

For me, I don't believe we have a moral obligation to sustain such relationships even if they are our kin. Holding on only sustains our pain, and they have already displayed their inability to understand and respond to you.

Even if your death changed them, you would not benefit. But you have the alterntive of walking away, as painful as that may be, and creating a new life.

I had enough of your experiences to appreciate where you are but, somehow, enough caring and support came into my life over the years to be redemptive, healing, sustaining. But we can't come to the surface by holding onto the anchor.

The human experience is full of pioneers who have abandoned their "old world" and, finding a hand to hold, have created a new life. Would love to see you join us.

Cheers for  the replys people I think I just needed to get it off my chest.

nan906 wrote on Jan 10^th, 2013 at 7:38pm:

trust me your mother would never feel that way. I have watched my husband for 12 years deal with these monsters...

G'day, nan906.  I like you.

Bob Johnson wrote on Jan 10^th, 2013 at 8:19pm:

I hope that in some earlier message I encouraged you to contact your excellent support group for some guidance in finding good quality treatment. Outfit worth you attention:  =============== But, to your message: betrayal by our family is surely one of the great hurts we can experience. The problem is that, holding onto our claim for their love/caring/attention sustains our pain. For me, I don't believe we have a moral obligation to sustain such relationships even if they are our kin. Holding on only sustains our pain, and they have already displayed their inability to understand and respond to you. Even if your death changed them, you would not benefit. But you have the alterntive of walking away, as painful as that may be, and creating a new life. I had enough of your experiences to appreciate where you are but, somehow, enough caring and support came into my life over the years to be redemptive, healing, sustaining. But we can't come to the surface by holding onto the anchor. The human experience is full of pioneers who have abandoned their "old world" and, finding a hand to hold, have created a new life. Would love to see you join us.

My clusters just recently started (November), and I am not one to just take off and "recreate" myself just yet, this is wonderful advice. I am currently searching for a job, but those close to me keep asking the question, "Could you actually do the work and hold a job in the condition your in?" It is as if they are trying to discourage me from living a normal life. However, they mean well.

I need to feel that I am in control of my life, and not that the clusters are controlling it. While we all need the support and understanding of others, we can't rely solely on that so-called "anchor."  Unless they have experienced the pain and fear we go through, they will never fully understand - and ending your life, as said above, will not benefit your at all. And if your family acts that way towards you, don't bother with them.

It sounds like you are thinking of ending your life simply as a way to send a message to your family, not because you are in chronic pain. If they aren't supportive at all and think you're being a "drama queen," I guarantee that message won't be received. Just separate yourself from them. It won't be easy, but it will be better for you in the end.

Seriously Dude, you are not alone. More people than you think suffer from CH. Hang tough, strap on your boots, saddle up, and SHOW THAT BEAST WHO'S BOSS!. I have Chronic CH too. My CH's shift and are sometimes bilateral. Some are so bad I pass out. I have never had a break longer than 60 days and my cycles shift a lot. I know it feels like you are ice skating uphill but that is never a reason to give up. Willpower goes a very long way in treatment, resistance, and quality of life. I know it sounds hard but don't let the CH's rule your life. I learned to endure 7's and lower and not let them interfere with me spending time with friends or family or enjoying activities. It has greatly improved my quality of life. I have had a dark time too. Just remember you are the only one that can turn on the light. So again I say strap'em on and saddle up.

I have been a CH sufferer since my teens (am now 52) and my last cycle was the worst in my life, lasting from April 2012 to October 2012.

I was convinced I had gone chronic. I developed health issues from the Imitrex injections alone.

I became severely depressed and kinda did feel like it was not worth going on. I missed months of work, and the cocktail of drugs they had me on to try to end the cycle only made me a blithering idiot (moreso lol)

When the cycle finally DID end, I was a mess and borderline suicidal. I began seeing a mental health professional to deal with the depression, etc.

Even though those sessions had no physiological impact, they certainly helped keep me sane.

I cannot imagine what you are going through having lost any support from those who it should be assumed.

Look at the link I just posted about a new implant just OK'd in Europe. Maybe that can help, and at the least offer what you need most...hope.

Good luck