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To newbies and "oldies"


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My story

When i was 23, right after i gave birth, a couple of days after i started to get this sudden, sharp pain hitting me, it hit me like lightning, from nowhere. It felt like i got a sword in my head. The first times i got confused, i felt my head with my hand and looked behind me, i expected someone there who had stabbed me with a knife.

No one there. I remember i called to the ER and they just said "How odd, and you say it went away? Well, call back if you get any more." That was only the beginning.

I started to wke up at night with a terrible pain. This pain so horrible i thought i had a stroke and was dying. I went up to go to the bathroom and fell down to the floor, unable to walk i crawled to the bathroom, had my hands to the sink and dragged myself up to look in the mirror. What i saw was my face with the one side hanging, like i had a stroke. Unable to do something about it cause of the pain i was just lying there. I was so afraid, i thought i was dying. It is hard even now to understand how this kind of pain does not kill you.

I went to my doc over and over and over again. He told me i had a migraine and was given migraine meds. It didn`t work. I was hit every night and day. He told me no one had migrains everyday. I went to the doc again and again and again..... Untill i gave up.... I started to think why everyone else with a migraine didn`t seem to be in this much pain and that they were coping somehow, and why i couldn`t take more than this. Or was it worse? Did i just convince myself it hurt this much? I didn`understand it..... I tried everything, healing, medicines everything. Nothing worked. Nothing.

A ice dagger, cold as ice and one hot as glowing metal one form the top and side of my head, in my eye. Twisting the knifes. Tooth ache so bad in every single tooth on the side. My eye felt like it was on it`s way out, red, swollen. My eye was tearing along with my nose. My head, like an open wound. It feels like every fiber in my body is shivering from the pain. Like sharp, burning hot razor blades was sawing in my scull and down to my neck and all the way down to my fingers. In the beginning i was afraid to die. After awhile i prayed to die. In the end i was crying and felt anger, why couldn`t i die?! Why didn`t i die?! Starting to ask myself questions like "is there a God? Is this worth it? Is this a worthy life? It must help if a hole was drilled to let the pressure out?" I felt like i had a devil inside my head, torturing me. Laughing at me, saying "no, i won`t let you die. I will torture you all your life and you cant do nothing about it." Only torture usualy ends with the relief of death, i didn`t die and it made me raving mad!!! Please let me die!!!

I lost weight, i got depressed, i planned for suicide. After 6 years getting hit everyday, every third hour, every thit lasting about 3 hours, i couldn`t take it anymore. And you get sleep deprived, REM sleep triggers an attack!! So for years i couldn`t sleep more than around 90 min before i woke up with it. No painkillers help, no doc could help me and the doc`s told me there was nothing wrong with me. There was nothing for me, not a worthy life. My conclusion was that my daughter was better off without me, i was a burden to her. From the time i decided that i actually felt a bit better. I felt calm. Finally, i had a solution to get out of this hell. Finally, id din`t have to go trough this anymore.....

"What if Sara got this?" One day it suddenly came to my mind. I needed to find a solution so that i could be there for her.

I found forum on Internet, filled with other people experiencing the same horrible pain as me. They had alternative treatment's and lots of trick like Red Bull, O2 etc etc. I found support and advices. And most of all, finally, i wasn`t crazy. The pain i had felt was real, it wasn`t just me. This was a turning point. I wouldn't have been alive without these wonderful, helpful people.

I appreciate the community and every single one of you so much. Your with me in my heart every single day. Everyday when i walk out the door or just wake up to a new day, 2 years after i found all of you, i am grateful. Every time i drive my daughter to scout or some activity i`m grateful, cause i am able to do it. Every time i`m at the gym i`m grateful i can. And the extra bad days, i am grateful cause it is so rare now i have these high kips. (Kip scale is a pain tracking scale) I wish for every single CH`er to not be sceptic, be open minded, we got nothing to loose trying and keep trying.

I love everything i do everyday. I got my life back thank`s to your help. I am not a prisoner in my own body anymore. I can take part in my daughters life, the way i want to do it. Cause of you and the effort on the forum. This is how much it helps, doing what you do. Every post, every advice and joke. Your with me in my heart forever. I`m not so active here now a days, i jsut want you to know how grateful i am and tell newbies how much this can change life.

Thank you.


Grief can awaken us to new values and new and deeper appreciations. Grief can cause us to reprioritize things in our lives, to recognize what's really important and put it first. Grief can heighten our gratitude as we cease taking the gifts life bestows on us for granted. Grief can give us the wisdom of being with death. Grief can make death the companion on our left who guides us and gives us advice.

None of this growth makes the loss good and worthwhile, but it is the good that comes out of the bad. (From: Beyond Absence: A Treasury Of Poems, Quotations, And Readings On Death And Remembrance)

- Roger Bertschausen

Ps. I pic was supposed to be here, but i can`t figure out how to upload!!! It`s in my blog. This is also written as a post on my blog, so it is written without treatment details, you folks know the details ;)

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Ting, honey, I am so grateful we have you. I'm so glad you survived this and came and searched.

I had a weird series of events leading up to my diagnosis, but I was diagnosed immediately. My life was hell, up until I discovered ClusterBusters. I think that there's no telling how many lives Busting has saved.

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I'm right on the verge of nominating Ting for official Cluster Busters mascot!  :) ;D

On a more serious note, as much as I can relate to your description of a 3 hour long CH attack, as a luxuriously lucky episodic CH'er I simply can't imagine having several of those every single day for years on end.

Thank Gosh you found clusterbusters!!!!!  :o

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Thank you folks :) This is a wonderful place, unique. Lately, i have been a bit more open about my alternative treatment. It seems to me the world is in a change, i do not meet the same curtain fall when people hear about it as i used to. They get interested instead, interested and very suprised why we are not given this as a med treatment. If there`S a change in the way i tell about it, i`m not sure, but i do not get judged. Also, i do not have many followers following my blog, but there`s allot of people subscribing per email, even people from where i do CrossFit, customers i had when i had my shop. It means more people know about CH. It`s like a drop into the ocean but every drop will make a different in the end let`s hope :)

Jeebs, i ment the picture of my daughter and me. It is from the first summer after joining CB, we travelled to Oba in Turkey. t doesn`t work when i do it. Stupid computer :P

Have a wonderful day everyone :)

PF days to all :)


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Thank you for telling your story ! God bless you and most of all, God bless the internet.  :)

I think people who don't have a way to get on the internet are in baaad place. With CH that point of giving up with the doctors is a black one, if you don't have knowledge about this of your own. I have always thought my CH got way worse when I "gave up" in the nineties before the internet, being told I am crazy or weak or whatever.

You can't save anybody else but you can try  :) Love & Light to everybody !


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