My story

Pain

The pain may be very sharp and may cause pain around the eye area and may also be a pain within the back of the eye. The pain of cluster headaches is markedly greater than in other headache conditions, including severe migraines; experts have suggested that it may be the most painful condition known to medical science. Female patients have reported it as being more severe than childbirth.^[5] Dr. Peter Goadsby, Professor of Clinical Neurology at University College London (now University of California, San Francisco), a leading researcher on the condition has commented:

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."^[6]

The pain is lancinating or boring/drilling in quality, and is located behind the eye (periorbital) or in the temple, sometimes radiating to the neck or shoulder. Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck, or sometimes having a leg amputated without any anaesthetic. The condition was originally named Horton's Cephalalgia after Dr. B.T Horton, who postulated the first theory as to their pathogenesis. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton's 1939 paper on cluster headache:

"Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief."^[7]

Thus, cluster headaches are also known by the nickname "suicide headaches".^[8]

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 treatments 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. Everytime 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.

Thank you.

Tingeling

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

The past 2 years i have been able to do flights. Sara loves to travel :)

Me going to gym!!