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Once in awhile


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Once in awhile i think we all get some thoughts and feelings that are hard to describe. Once in awhile i find myself in a place where i get this feeling of something, life maybe, i don`t know. Life and death. Inside in that room i`m not sure how long i`m gonna live. Or more how long my head will last me. It seems to me allot of CH`ers get heart attack. Maybe from the triptans we used, but i`m not sure, i think maybe it`s one of the CH "system failures". When your full of all kinds of symptoms, and most of them are felt in the head i wonder is it a matter of time before the blood vessels are worn out from all the pressure? I ask myself if i will know the difference between a high kip and a stroke. When my head stops to work, when i cannot think or remember or find words or forget what i talk about, i'm thinking this must be close to dementia. My brain feels unhealthy in some way. Then i feel tired, like i`m tired of living, i get the feeling i won`t live to be an old woman. Or will CH go away some day, just vanish? Most likely not. Lying like this, looking at my condition, everything feels so far far away. Can i do it, can life continue year after year like this? Life feels fragile, like it can slip away anytime. And it can, that is a fact. I tell myself that we cannot control these things. One time i read a blog about this little girl, she had epilepsy, a very difficult case, she couldn't go to school, basically she`s so sick she`s in a hospital bed all day long. That`horrible and unfair. My situation is not, actually it is the opposite. Fell asleep, woke up and felt like sharing my feelings with people who understand what a condition might bring on you once in awhile, with the only persons i know that visit the same room from time to time. I get up, make myself ready for a new day and the thoughts and feelings are left in that room, feels far far way. A short visit and we move on, like it didn't happen. Life is a mystery.

Forrest Gump said his mother told him that life was like a box of chocolate. Sure is, every bit do not taste the same but their all part of life.

I wish you all a wonderful day. How lucky we are :)

I`m grateful for my life and what it brings :)

Allot of love and hugs from me


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Hi Tingeling,

Your post struck a note with me that rang in my head for a long time after meeting The Beast 3 years ago.  I found an interesting answer to this question, about the disconnect and dementia often associated with CH.  There is a solution for finding the "meaning of suffering".

Viktor E. Frankl writes prolifically on "existential psychiatry" and on finding the "Will to Meaning".  He eludes to the idea that even the greatest suffering, beyond which we can have any control, can still lead have meaning.  He spent years in concentration camps during WW II in Germany and gained much of his insight there. 

I was directed to Frankl's works by Carter Lee, who spoke at the conference in Las Vegas last year.  After reading "When Jonathan Cried for Me", I had to get in on some of the insight that Carter and others have gained. 

It's amazing stuff and the answer is different for all of us.  When you find yours, CH can be a much more tolerable place.  Our lives would all be SO MUCH BETTER without it, but at least some betterment can be obtained.  Part of that is just in communicating with fellow suffers and supporting each other.

BTW, beautiful song.  Reminds me of the music that Tim Robbins was playing in "The Shawshank Redemption" ... 1994.  "Duettino - Sull'aria" from opera "Le nozze di Figaro (The Marriage of Figaro)", composed by Wolfgang Amadeus Mozart.

Many PF days to you .......... [smiley=happy.gif]


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Being in that room, being here and now, acknowledge and acceptance of own feelings around felt physical pain is to me not suffering and does not mean psychological suffering either, it is one of the chocolate pieces in life and it fascinates me how we can move from one room to another like that. It`s beautiful, CH has changed me and makes me want to be a better person :)

Weatherman, that song was beatiful :) Thank you for sharing both thoughts and song :)

Love and PFW to you all :)

Hug from me


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I enjoy reading your posts.  Sometimes they so closely echo my experiences and/or feelings.  I aspire to be a better person as well.  The last few years I've felt so much better mentally and physically than I have most of my life.  I've had a beautiful existence, if it were to end I'm ok with that, but plan on spending some of my future (Pain Free) time helping others.  Either with CH or with other needs.

PFW :)


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I wrote a post earlier this week, and then didn't post it. But it too was titled along the lines of 'every once in awhile...'

It was going to continue with.. 'it's good to remind ourselves that we are just tripping.'

That thought occurred to me about 3 hours after taking shrooms, and I was lost in a kaleidoscope-world of 1000 colours. The thought came to me again the next morning.

Life after all, is just a trip. And we are all just trippers, going through this life taking in our surroundings, perceiving them however our mind is programmed to perceive them. No drugs required. 

The first 40 years of my life I was consumed with an inner conflict of living in the wrong body. I fixed that. Through heartache and pain even CH'ers can't imagine. I fixed that. It's easy for me to think that one result of fixing that problem is Clusters. It is, that is true. But I have also begun living life like I've never lived it before. People who know me are amazed at all I do, how I live life like an 18 year old. And then when they hear about the hell I live with, they are doubly amazed.

Not blowing my own trumpet. But I know the room you are talking about. I know it all to well. And I guess a big part of me has stopped worrying about such things. I rarely even think about suicide these days. My trip will end when it ends. I'm just too busy living life to worry about it.

A very good friend of mine who has a much deeper understanding of reincarnation than I has a theory that I, like a lot. He says that when a spirit is young, the first few journeys through this life they want to be rich, famous, etc. But as a spirit gets older, and has lived a few lives, he or she wants to explore deeper meanings. Experience different challenges. It is these spirits that are born into a life of difficulties. Life long illnesses, poverty, etc. These are very mature spirits.


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