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Cluster Headache Help and Support >> Getting to Know Ya >> Introduction - You can't see what I feel

Message started by Rafael on Sep 1st, 2018 at 5:28am

Title: Introduction - You can't see what I feel
Post by Rafael on Sep 1st, 2018 at 5:28am
Hello everybody,
my Name ist Rafael. I'm from germany and a clusterheadache sufferer for nearly 20 years now.
9 years ago I was completely lost. I had the feeling nobody really takes me seriously and nobody really can help. I wanted to yell it in everyones face and decided to write a book. Because a book is the classic way an individual can reach many.
So I did.
Five years later, in 2013, a small publishing house took the risk and released "Schmerz frisst Seele" (Pain eats soul) in Germany.
The years went by and some people told me that my book had helped them. Something that I did not think it is possible years ago and therefore never expected.
If sharing me experiences and thoughts could help others, I should share it to more people.
So I did, and had the book and several blog posts that were written additionaly after the german release translated to english. This was released on a big online bookstore one year ago.
For it's first anniversary I decided to post it here. Chapter by chapter.
The next will come tomorrow and I try to post one chapter each week.


According to one fairly prevalent myth, the Eskimos have a hundred different words for snow. This is actually a tall tale that originated in 1911 with the German linguist, ethnologist, and anthropologist Franz Boas, and it formed from a lack of understanding of the polysynthetic language spoken by Northern peoples. Only in 1986 did anthropologist Laura Martin write an article titled "Eskimo Words for Snow" in American Anthropologist, in which she clarified this myth. Franz Boas had probably only wished to express that the Eskimos had adjusted their language to suit their environment. Someone surrounded by snow will have a more nuanced way of describing it.
Just like the inhabitants of the North Pole know snow, I know different types of headache. Each one has to be addressed differently. The traditional terms for affective (e.g. nagging, agonizing, paralyzing, terrible, severe) and sensory (e.g. pulsating, throbbing, stabbing, dull, pressing, burning) descriptions of pain are not nearly sufficient to comprehensively describe the overall artwork that is cluster headache.
Pain is that which one perceives as such. Suffering from pain can make it incredibly difficult for one to communicate with their environment. Pain is a highly subjective perception. It is difficult to comprehensibly and clearly explain it to other people.
This book documents and describes the effects of a chronic illness, cluster headache, on my life, thoughts, and worldview. I am afflicted, making me a patient and not a doctor. I cannot and do not want to make any diagnoses. Rather, I want to try to put the pain I have endured - and its consequences - down on paper. It's also sort of like I'm explaining to a Majorcan the difference between snow, firn, crusted snow, and corn snow.

When I decided to write down the story of my illness, I was far more bitter than I am now. I've since become mortified by my original ideas for a title, namely: "No Escape - I'd Sell My Soul to Get Rid of the Pain", "The Pain Stays with You", "You Have the Pain", "You Can't Share Suffering", "Nobody Can Help You - You Have to Live with the Ache", and even "Cluster Headache - When You Torture Yourself". I tried to scream the ache away, because nowhere did I feel like I was sufficiently understood. Thankfully I have since opened up my ears, and ultimately learned how to listen to myself.

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Title: Re: Introduction - You can't see what I feel
Post by Rafael on Sep 1st, 2018 at 5:43am

If someone is willing and able to do more translations. For example, in spanish, french or russian. I would like to support that.

Title: Re: Introduction - You can't see what I feel
Post by AussieBrian on Sep 2nd, 2018 at 2:56am
A great intro,  Rafael,  and I look forward to chapter 1. 

Many ClusterHeads have written poetry and songs about our nightmare and it's my big regret since falling victim to that I never collected these works as they came along.

I'll be more careful with your contribution to our collective mind.

Title: Re: Introduction - You can't see what I feel
Post by Mike NZ on Sep 2nd, 2018 at 4:18am
Willkommen zu Rafael

I look forward to reading the rest of your book which has a great start.

"Nobody Can Help You - You Have to Live with the Ache"

I think we all understand where that came from with our own experiences before we educated ourselves or found good doctors who could help.

Title: Re: Introduction - You can't see what I feel
Post by Johnno on Sep 4th, 2018 at 11:46pm

I look forward to reading the rest of your book which has a great start.


Sehr gut!

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Sep 12th, 2018 at 1:54am
After the book is before the book

Thoughts and Facts for the Second Edition.

What actually happens when you want to use a book like this one to give the entire world deep, or maybe the deepest, insight into your soul? When you lay out all of your flaws and shortcomings out on a silver platter? When you pull your trousers down and stand naked in the wind?
When I wrote the first sentences down years ago, all I wanted to do was scream out - well, describe - my pain. To cry out everything under the sun because nobody could help me and nobody had listened. I was miserable.
While the book was being made I actually never thought that I was performing a public striptease in doing so. It was clear to me what I was doing, but I had never considered that side of it before. Another author pointed it out to me on the first day of the book launch. "When strangers get into bed with you, or rather your book."
Yes, it's possible. Some of my most intimate thoughts are lying on the nightstands of complete strangers in the form of this book. Yet over the course of many therapy sessions and conversations I had already learned that outward expression is important. Your thoughts and feelings can only be perceived by others if they are expressed. I either want somebody to understand how I'm doing, or I don't. I wanted it!
Now, I'm not happy that it is the way it is, but I'm also not embarrassed. There's nothing at all to be nervous about.
Or is there?
Of course there is!
Because I didn't know how the outside world would react to what I have experienced, thought, and written down. People close to me, people who already know me, had read it. Many publishers had read excerpts of it, but most of them didn't see the manuscript turning into a book. Now everyone can read it.
Some have already done it, and in turn I've heard echoes back from them. People I knew in passing. People I've known for a long time but who did not know this side of me. People who knew me before I got sick. And, of course, people who didn't know me at all but who suffer from the same disease. The reception from all of them has been entirely positive. It's exactly the type of understanding I have always hoped for. Moreover, other sufferers said that they could identify with at least a few aspects. This is where I achieved my goal.
I am happy
It's how I know I didn't produce a pile of crap. All reception from here on out is a bonus. Hopes will now be fulfilled. I have also been told that my ideas are accepted and that people can learn from my own journey. I hear this even from people who don't suffer from cluster headache whatsoever. They have read this book and let me know that they have been able to benefit from it. Inside I had already long suspected that many of my strategies for managing cluster headache could also be used for similar (e.g. migraine) or completely different diseases. Going even one step further than I had hoped fills me with a little pride.
At the very least I did everything right in turning my deepest thoughts outward. I have only benefited from it.
The book has also benefited, especially from its readers. Obviously I alone did not think of all of the relevant questions and issues. I respond to a selection of the most important and common questions in the FAQ chapter. In it I don't provide any general advice, but rather disclose my own views, convictions, and the processes that have proven helpful to me. I cannot predict which actions will be the right ones for everyone. Everybody is different, and everybody has to find their own way. But learning from something and being inspired by it is not only allowed, but desired and encouraged.
Another victory for me is when I come across my own conclusions in a similar form in other books or presentations. In A Journey of 1000 Miles Begins with a Single Step, Luise Reddemann writes about stopping to think, as there is no silver bullet and everyone has to work on paving their own way.
Last year during one of his presentations, Dr. Hartmut Göbel spoke quite impressively about how headache patients often possess a mind that absorbs a lot of - perhaps too much - sensory input. The key phrase was "minimisation of irritants". Such overlap with my own experiences solidifies my certainty that I am headed in the right direction, doing what I like to do and looking contentedly toward the future. This is true even when I wake up in a bad mood after a night marred by three attacks, because I admittedly not free from this demon. This book is about living with a disease, not conquering it.
As the cherry on top, my attending neurologist spontaneously wrote me a foreword. She attests that the title of the book is wrong because the pain has certainly not eaten my soul, but at the very worst has gnawed at it, and I take that to be great praise to be put up on my shelf. No, I'll frame it and hang it up on the wall. But I must also return it, because she is not entirely innocent in this matter. When I first sat in her waiting room my soul was nearly gone. What began with a smiley - drawn by Mrs. Gendolla on a pack of medication - turned into a relationship of trust that I cannot imagine being more wonderful.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Sep 12th, 2018 at 1:55am
Instead of a Foreword

You’ll Never Walk Alone      
by Dr. Astrid Gendolla

I have been a practicing physician in Essen, Germany for twenty years now, and in this time I have worked with so many headache patients that I lost count. I most frequently encounter people with migraines who no longer know where to go about their terrible pain. The most insidious, however, is cluster headache. It manifests in attacks, and comes virtually out of nowhere. Attacks entail extremely severe pain that can last for a long time, and then vanish just as suddenly. The dreadful thing about this disease is the absolute powerlessness against its randomness. Attacks can return at any time, without warning, without abstention. People who live with this disease are simultaneously living in constant fear.
Rafael Häusler has faced this fear. He meticulously describes the stages of the disease, reflects on his life with cluster headache, and tries to find answers. But there is one thing that I would like to firmly disagree with Rafael Häusler on. The title of the book does not apply, at least to the author himself. The pain has not eaten his soul, and as his attending physician I can confirm this. Perhaps it has tried to, perhaps it has gnawed at his soul from time to time. But Rafael Häusler defied it. I am certain that his journey must have been difficult, the road bumpy, but ultimately so successful that he is able to write about all of his experiences. A beneficial process? It is not my place to say. In any case writing is a known way to look at the entirety of a given subject. Rafael Häusler's notes, turned into a book, also have another effect: they help other people better understand the disease and those who suffer from it, and they show other patients one very important message: "You'll Never Walk Alone". There are people who understand you, who feel what you feel, who are with you. That alone makes this book invaluable.
I am happy and grateful that my profession allows me to join Rafael Häusler on this journey, and to speak with him on a regular basis. I can truly recommend this book to you from the bottom of my heart.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Sep 12th, 2018 at 1:57am

A definition of the symptoms of cluster headache syndrome. This also includes a personal introduction, along with the description of my own symptoms.

What is Cluster Headache?

The phenomenon of cluster headache has been re-described a number of times over the years, the result being many names for this rather rare sickness. In accordance with ICD-10, medical professionals refer to cluster headache with the shorthand code G44.0.
The ICD-10 from 11 is the current version of a globally recognised diagnosis classification and encryption system issued by the World Health Organisation (WHO).
Former terms and designations include:
Ciliary neuralgia, erythromelalgia of the head, erythroprosopalgia, hemicrania angioparalytica, hemicrania periodica neuralgiformis, histaminic, (Bing-)Horton syndrome, Harris-Horton syndrome, Harris's migrainous neuralgia, Gardner's petrosus neuralgia, Sluder's neuralgia, neuralgia of the Ganglion sphenopalatinum, and Vidian neuralgia.
Another common term - "suicide headache" - has understandably fallen out of fashion.

An unbelievable number of names for a disease with just as many facets. It remains a mystery why there have been so many ways to refer to a relatively rare illness in the last 150 years. It could be because, truthfully, no two cluster headaches are alike. Yet it gives utterance to the helplessness against the phenomenon.
Cluster headache, properly known as cluster headache syndrome (CHS), is a chronic and untreatable disease. It is one of the trigeminal autonomic cephalalgia (TACs), which also include paroxysmal hemicrania (PH) and SUNCT syndrome (short-lasting unilateral neuralgiform headache with conjunctival injection and tearing).
Wikipedia defines TACs as follows:
"Trigeminal autonomic cephalalgia is the name for a type of primary headache that occurs with pain on one side of the head in the trigeminal nerve area and symptoms in autonomic systems on the same side, such as eye watering and redness or drooping eyelids."
The term "trigeminal autonomic cephalalgia" was first used in 1997 by Peter J. Goadsby and Richard B. Lipton.
Other similar headaches include hemicrania continua (which entails constant pain but the autonomic characteristics are less constant), and SUNA syndrome (short-lasting unilateral neuralgiform headache attacks with cranial autonomic symptoms). However, these are categorised as "Other primary headaches" in the headache classification of the International Headache Society (IHS).
The various types of trigeminal autonomic headaches primarily differ by the time patterns - duration and frequency - of the attacks.
The signs are extremely severe (head) pain attacks. Relatively distinct characteristics of CHS are the unilateral occurrence and distinct accompanying symptoms like reddened and watery eyes, swollen nasal mucosa, contraction of the pupils, and sweating from the face. The pain lasts for 15 to 180 minutes. The number of attacks varies greatly from one person's cluster headache to the next. They could be nighttime attacks every two days, or multiple throughout the day. My personal maximum is five attacks per day. Contrary to all other types of headache, a cluster attack entails unrest. And much unlike migraines, there is no sensitivity to light and noise.
The intensity of the pain can easily lead to unconsciousness. During a severe attack the sufferer may not be responsive, and could not be physically able to use the muscles required to tie their shoelaces.
CHS is divided into episodic and chronic manifestations, whereby the episodic manifestation is also a chronic disease. With episodic cluster headache, the pain attacks occur frequently within a certain period of time and are broken up by temporary, symptom-free phases of remission. The pain episode can last from a few weeks to a number of months. The remission phases can even span years. If there are no such remission phases, or if they are too short to provide any actual respite, this is referred to as chronic cluster headache.
Ironically, cluster headache is not dangerous, despite the intense pain. The medical world sometimes refers to it as benign suffering, as it is not fatal like some diseases, e.g. cancer. Thank you, dear medical professionals, for this trivialisation.
The extent to which CHS affects one's personal life depends on the number and frequency of the attacks. If someone experiences two months of episodes per year with nightly attacks every other day, and enjoys ten-month remission phases in between, they will probably be asked from time to time why they look so unrested. But if someone suffers from the chronic manifestation and experiences an average of three or more high-intensity attacks every day, a normal life is most likely no longer conceivable. Instead cluster headache becomes a constant companion that engrains itself in every aspect of one's life. Especially with severe manifestations, the level of impact also highly depends on the sufferer's social environment and financial security.

For me the pain is not just a phenomenon that comes and goes. Indeed, it is clear to me that the pain is just made up of electrical signals - nerve impulses - running amok in my brain. But I feel the pain, or pains, to be a lifelong companion. It's just like a living creature. Cluster headache is a raging animal mercilessly striking at me with no pattern, no warning. A migraine, on the other hand, is like a jealous creature. It wants all of the attention for itself, but is fair enough to announce its arrival in advance.
Further information, especially concerning the current treatment recommendations of cluster headache, can be found in the current guidelines of the German Neurology Society, among other places.

Title: Re: Introduction - You can't see what I feel
Post by AussieBrian on Sep 14th, 2018 at 5:57pm
Great work,  Rafael.  In getting this story out among the general public you'll be helping countless ClusterHeads in so many ways.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Sep 19th, 2018 at 2:24am
Who am I?

My Personal Cluster Headache

As of the time at which this book is being conceived in my head, I am a male individual born 38 years ago in Germany's Ruhr region, and I still live here.
Cluster headache has been a part of my life for more than ten years now. In this time it has become more and more integrated into my life and continues to take control. The course of my life was certainly not shaped by it alone, but it definitely played a significant role.
Much of the information in this book gradually came together in the form of journal entries and originally served to process what I have experienced. On top of that are insights and strategies that I have worked out over the years and which have been imparted to me. If my experiences can help even just one other person affected by cluster headache, then this book has been worth it.
Another reason for writing was that I have never been able to explain to someone everything that's written herein.
This book took three years to create, and in that time I participated in a number of different measures and conducted a variety of treatments. This absolutely difficult therapeutic work in particular gave me new perspectives that I had ceased to believe in, despite my sickness.
It is easy to say that a person is no more than what pain has made them into, or even what is left of them as a result. But only I can decide how much I permit such self-abandonment. It's my inner attitude that give me a certain degree of control over my well-being. This attitude can either be a life-destroying downward spiral or a reliable source of support in threatening internal and external situations, depending on one's mood. The desire to actively participate in one's own development is absolutely necessary to break through what could become a vicious cycle.

My own personal cluster headache can be characterized as follows:
•      Affected side: right
•      Occurring since 1999
•      Diagnosed in late 2004
•      Up to five attacks per day (raised this to eight a day in February 2016)
•      Attack duration: 15 to 120 minutes
•      Pain intensity as bad as unconsciousness, not responsive, impaired motor skills
•      Originally about three months of episodes and nine months of remission per year. Eventually much longer episodes
•      Accompanying systems like watery eyes and runny/congested nose not particularly distinct

Of course, the primary symptom is and remains the pain. Its long-term recurrence results in other symptoms as well. I define the following symptoms as primary side-effects:

•      Sleep disorders
•      Concentration disorders
•      Amnesic aphasia
•      Paranoia when falling asleep
•      Brief stinging pains (1 – 5 minutes)
•      Loss of libido (over a span of months)

I consider some other side-effects to be secondary:

•      Depression (BDI-II 43 points, depression starting at 30)
•      Impairment of physical performance (worst-case scenario with Topamax. I had to look at a packet to remember what the tablets are even called - forgetfulness)
•      Impairment of mental performance
•      States of anxiety/panic (e.g. if no medication is within reach)
•      Alternation between aggression and apathy – very hard for relatives and friends to deal with
•      Auto-aggression/tendency toward self-harm
•      Extreme forgetfulness
•      Listlessness/no motivation
•      Lethargy/sluggishness
•      Sweating attacks and other vegetative disorders. These do not always precede/follow pain attacks.

What else does my cluster headache do to me:


It has made me sensitive to light, especially with regard to light reflexes. It is thus not possible for me to spend time outdoors unprotected from the sun from April to October. Otherwise I would experience severe, migraine-like headaches and nausea within a very short period (< 5 minutes). As a result I can generally only go outdoors with a hat and sunglasses, especially when it's really warm out. Even when I'm doing somewhat better, I can only go outside with "protective clothing". It's entirely unknown why that is, and it is an incredible impediment to my everyday life.

Weight gain

The many medications I have taken caused me to gain weight. Yet the reward principle (chocolate after nightly pain attacks) and subsequent irregular meals on the days after attacks also played a part.


It feels like I have aged 30 years, as all of my bones ache. Of those 30, 10 to 15 are certainly because of Topamax. Without Topamax I do much better, but still not good. To give a specific example, it is impossible for me to go up a set of stairs right after waking up.

Attacks after moments of strain

Pain attacks really like setting in after or during physical strain - e.g. riding my bike for 30 to 60 minutes. If nothing happens then, nothing will happen later. But this is not always the case, and happens about half the time. I get the impression that the symptoms start in brief phases of recovery, e.g. when I'm cruising down a mountain. What gives me this impression? Not much, aside from the fact that I can now only engage in my favorite hobby for a limited amount of time.

You can visualize someone suffering from pain by comparing them to a car in the winter. The pain behaves like frost. Only when it's cold enough will the car's motor fail, as the battery is no longer delivering enough power to rotate the starter. This image also illustrates another situation that I find myself in. The line between being able and unable to work is not fluid, but is hard and abrupt. If the pain exceeds a certain level, I sink backward into my condition and all corresponding symptoms promptly worsen.
Then when the car just starts up again, the heating works and it drives as through it had a fresh, fully charged battery. If I forget to repair my empty battery the car may break down again the next day. If I accidentally leave the light on, it definitely will.
But contrary to cars, which can be replaced with a bus, train, or taxi in an emergency, there is no replacement for one's own body. That's why it's important for me to know the limit in time.

Title: Re: Introduction - You can't see what I feel
Post by AussieBrian on Sep 19th, 2018 at 3:47am

Rafael wrote on Sep 19th, 2018 at 2:24am:
This attitude can either be a life-destroying downward spiral or a reliable source of support in threatening internal and external situations, depending on one's mood. The desire to actively participate in one's own development is absolutely necessary to break through what could become a vicious cycle.

Truly spoken,  Rafael. 

I fell into that vicious spiral once,  which was more a cataclysmic vortex at the time,  until I realised I was the only one who could pull myself back out.

Had all the help in the world from my supporters and,  which was indispensible,  but it was all still down to me.

I remain ever thankful they were there to back me up.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Sep 19th, 2018 at 1:51pm
Before the Diagnosis

Headaches have never been a stranger to me. My mother had migraines now and then, so it was normal for me to have the occasional headache. But shortly before the turn of the millennium, I experienced an entirely new type of pain.
I cannot pinpoint the exact date of my first cluster attack, as I did not record any precise information in the first years. In the first one or two years, though, it was notable and distinctive that the attacks only occurred at night. Over a span of about two months I was torn out of sleep in this harsh manner more frequently. It felt like something was smouldering in my head. Always in the same spot. So I would wander through my flat, crumple up on the floor, press my pulsating and burning temple against cool objects in an attempt to alleviate the pain. Every night it took one or two hours for the pain to subside.
I tried all of the commonly available swallowable, chewable, or effervescent painkillers to find the fastest possible combination. And I always wondered why the tablets worked quickly sometimes, slowly other times, and other times not at all. Now I know that they never worked. Every now and then I was just lucky that the attack was just over in half an hour or so.
My general practitioner, whom I first approached with the matter, had no idea where my pain could be coming from. He prescribed stronger tablets, which of course did not help either. At the time I always had a faint impression that the pain was coming from my upper jaw. I remembered a root canal operation. But the dentist also could not find any issues. The X-ray showed a slight shadow on a root in my upper jaw. In my desperation I asked that the healthy tooth be extracted, in the hopes that it was the culprit. Of course, it wasn't. My desperation intensified.
But before I could subject my body to any more nonsense, the episode was over and I ceased to exhibit any symptoms for a number of months. The gap in my teeth, which still serves as a daily reminder of those times, still bothers me. But I was happy that this phantom pain was finally gone.
I would have happily left the pain behind me. But when the next episode started up, the pain did not only occur at night, but during the day as well. Now the pain had found a home behind my right eye, and no longer seemed to be coming from my jaw. I ingested painkillers like Smarties, and started to become withdrawn. Nothing is fun anymore when you have headaches. The waves of pain were so intense during the day that I was unable to do anything while they were happening.
Problems at work and in my personal life were amplified. The idea that the pain was from a tumour started to marinate in my head. There had to be a reason for this monstrous pain. The image of a foreign body in my head, no smaller than a chicken egg, formed before my mind's eye. Yet magnetic resonance imaging (an MRI) did not find anything. None of the doctors had any idea what I could be missing. Every test returned with one result: I am healthy.
That still did nothing to stop the constantly recurring pains that were driving me to insanity. I consoled myself by saying, "It's just pain, it won't kill you, it just hurts." This attitude actually helped me a little - just not a lot. Now I know that this approach was entirely sensible and can be seen as cognitive behavioural therapy.
With every passing day marred by this pain, it became less clear to me why I was even living and what my purpose was. Death increasingly became a sensible alternative. Naturally, my professional and personal life suffered. I became newly single, and then newly unemployed.
A cycle begins at this point. During the pain episode, all motivation collapses. The cluster wrings me out and shatters me against the wall. Once I'm lying in shards on the ground, it subsides. Sometimes it's more difficult to maintain a normal life after that, to sweep all your pieces back up and reorganise yourself - all just to ensure your own survival. However, such euphoric ideas like quality of living and optimism remain alien to me. I am no longer alive, I merely exist.

In late 2004 I was deep in the middle of a pain episode, lost all of my motivation once more, and only had a tattered life to look back on. But this time, a few simple, small things led to drastic changes.
One night in the first or second week of December I was sitting in front of my computer and asked the internet, "What if constant headaches make me unable to work?" Specifically, I enter the words "headaches" and "unable to work". When I saw what this simple question returned to me, it was as though the Oracle of Delphi had just paid me a personal visit. The resulting keyword was "cluster headache", and there were pages with personal stories and pages of clinics who provided a definition and description. The greatest wealth of information can be found on the websites of the CSG e.V. (or, to provide its full name, the Federal Association of Self-Help Groups for Cluster Headache Patients and Their Loved Ones).
In all of the stories, reports from sufferers, and the forum posts that I read that night, I found a lot of things that I must have experienced in the past years. Suddenly I was certain that I had at least found the name for my invisible, overpowering opponent.
There are not many self-help groups in Germany. Thankfully I live in a megalopolis, and a self-help group met in the next city over. The next meeting was even in a few days. With my newly acquired knowledge, and thanks to the lists of doctors on the info pages, I finally found a doctor who might be able to help me. And I greedily learned that there is medication that can provide relief. This information was like rain the desert for me.
At the next meeting of the self-help group I was given further confirmation that my assumption was correct. Two days later I was visiting the doctor I had picked and everything was clear in just a few minutes. The suffering I had endured over the past five years was compressed into one diagnosis: cluster headache. Armed with prescriptions for Imigran and oxygen, I was on my way home. Now I finally had weapons against my nemesis that, just a few days before, did not even have a name.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Sep 28th, 2018 at 8:01am
Important Note

The trade names of medicines are not the same throughout the world.
For example: Imigran is called Imitrex in several other countries.

I used the trade names from Germany. Cause the eBook is available worldwide, there is no chance to translate this in way which is valid everywhere. Therefore, I remain with the original names.

After the Diagnosis

It is abundantly clear to anyone who can no longer walk because of an accident or an illness that they rely on assistance in the form of a wheelchair. Someone who becomes blind will not have any illusions that they will be able to lead the same life they had up until that point. After the firm diagnosis of "cluster headache", however, it took a while for me to accept that it was now, and would remain, a part of my life.
But knowing that I suffer from cluster headache did not mean that I had found the off-switch. It also did not mean that I would perform Step A, take Medication B, and then be able to lead a pain-free life overnight.
For me cluster headache had been a loyal companion for years, a part of my life. But now it had a name, a face. That does not make it disappear, but rather more tangible. I was given prescriptions for every recommended standard medication, and was allowed to experiment to figure out what worked best for me.
Over the years I tried different means and methods for prophylaxis and acute treatment. Not everything worked, but thankfully some did. Cortisone pulse therapies had no effect on me. In terms of prophylaxis, Topamax only had dramatic side-effects, and Imigran Nasal left an absolutely ghastly taste in my throat. All of the triptans administered in tablet form were fruitless.
It became apparent over time that the first-choice medications from the guidelines of the German Neurological Society (GNS) for treating cluster headache and trigeminal autonomic cephalalgias were actually the best choice for me as well. This entailed high to very high doses of Verapamil for prophylaxis. At least 720 mg per day proved effective in my case. However, after 480 mg the side-effects of Verapamil were so strong that I had to overcome a lot just to take a higher dosage. However, the pain relief that came as a result was absolutely worth it.
I successfully took oxygen, which has to be inhaled with a high power density, to acutely curtail the attacks. 12 to 15 litres per minute are absolutely necessary, but the inhalation of oxygen only alleviates and shortens the attacks. A cluster headache attack can actually be eliminated with a subcutaneous injection of Imigran. The shot takes effect within five minutes and actually gets rid of the pain. The day I first took a shot of Imigran will be a special anniversary for the rest of my days.

It was the evening of 16 December 2004, when the very first season of the television show TV Total's high diving competition event Turmspringen was airing. It felt like an inner fire was tearing through all of my veins to the tips of my extremities. After a few minutes it felt like all of the droning in my head vanished in a single breath. I lifted my head and looked around, confused. The pain was gone. The pain that had caused me to writhe on the floor for so many hours, that left me powerless and which was responsible for so many restless nights. Click - it was turned off! I sat alone on the old furniture in my poorly heated flat and, in that moment, I felt simply unbeatable.
The 0.5 ml injection solution, which contains 6 mg of the agent sumatriptan, can have life-changing effects. To this day it is downright euphoric to take an Imigran injection - especially after a long break - and to feel (in the truest sense of the word) the medication in your veins and to just be able to get rid of the pain so easily.
Yet for as clear as it seems, it has many side-effects. I learned this as I started regularly taking too much of it. In my case, "too much" was about ten injections per week. So not during every attack. As a result I wound up in such a state that I felt like I was in the middle of a giant cotton ball. I didn't care about anything, and I did not pay anything any mind. A friend asked what was wrong, and said I looked really dazed. I am still unable to find a better way to describe the way I felt at the time.
Of course I learned that, at the time, I was no longer able to responsibly operate a motor vehicle. I could no longer (or rather, should no longer) drive a car. Everything simply happens too fast out on the road. Thankfully it only took a few close calls to bring me to this conclusion.
There is another memory that burned itself into my brain: I stored letters on my kitchen table for three months. The post piled up. I was horrified, and it proved to me that I still had a lot to learn in order to better live with my disease.

Zomig Nasal joined the medication duo of oxygen and Imigran Inject in 2010. Zomig Nasal is also a triptan with the more recent agent zolmitriptan. Like the injection form of sumatriptan, zolmitriptan as a nasal spray has been approved to treat cluster headache. While Zomig Nasal also leaves an undesirable taste in the throat, it's not as long-lasting and stubborn as Imigran Nasal's aftertaste. In my experience its effects are not as absolutely certain, and it doesn't always work. But when it does, it promises twelve pain-free hours. This makes it life-changing.
Ultimately, I have found fortune in misfortune! I attest to oxygen, and the two medications approved to treat cluster headache - Imigran and Zomig - work as well.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Oct 3rd, 2018 at 4:55am

A number of questions I have asked myself and which have long gone unanswered. It took many discussions with other sufferers to learn that I was not the only one asking them.

Why Me?

Why is this happening to me? Why now? This question can arise any time someone reaches a difficult time in their life, and clusterheads aren't the only ones who ask it. Some people ask it over and over again.
I don't know the answer to it, and the fruitless search is tiring. As a result, the question ultimately only amplifies the exhaustion. But circumstances prevent one from actually putting it out of their mind.
I have lived with cluster headache for a good decade now. In that time there have been good days and bad. The pain doesn't care what type of day it is when it sets in. Wildly erratic, it has not followed any specific rhythm for years now. I am entirely certain that it has completely disconnected from any inner and outer influences. It appears as though it has its own mind, as though it were its own entity. It shows up and dominates whenever it deems fit.
Why me? When it comes to migraines in particular, we look for its cause in an imbalance of the soul, its needs or its demands. It actually seems that such a connection can be found in most migraine cases. In his comprehensive book about migraines, Oliver Sacks writes that there is a reason behind every migraine. He reached this conclusion after investigating more than 1,000 cases.
Yet cluster headache is not a type of migraine, but rather a disease that may be related. So, dear doctors, do not treat cluster headache as though it were a form of migraine, even if there are unquestionable parallels between them. In my own head I know four different types of headache, and each of them wants to be treated differently. Each demands its own personal reaction.
"Why me?" is a question that may never have an answer, but we still have the potential to make sure that cluster headache is recognised as an actual, independent disease. We don't just have a headache, and we don't have a type of migraine.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Oct 7th, 2018 at 3:05am

Cluster headache is brutal. It strikes its innocent victim without warning. It's human nature to seek an explanation in religion when rationality cannot provide any.
Why does suffer from cluster headache at all? Why do they exhibit these painful attacks? Physicians differentiate between circadian (daily) and circannual (annual) rhythms. It is certainly not the only, and absolutely not the largest, unsolved puzzle in this world, but for those affected it is by far the most interesting.
In such cases many people, at least in Western Europe, are conditioned to turn to divine counsel as a universal explanation for the unexplainable. Indeed it provides tremendous relief when one is able to simply believe in a higher power in this situation.
In his book Angels & Demons, Dan Brown writes the protagonist Robert Langdon as saying, "Faith is a gift that I have yet to receive." And in his book The Happiness Code (Der Glückscode), the author Dieter Broers - whom I believe to be firmly rooted in the abyss of the esoteric - writes, "The Bible knows that faith can move mountains. Without wanting to compete with the Book of all books, I would like to add one thing: thought can create mountains."
Actually, with each attack the sufferer finds themselves facing the why-me question again. At some point I also began thinking in that direction. Always "why me?". Is it some kind of punishment? It was one claimed in jest that if things aren't going right in life, it must be because of exorbitant misconduct in a past life. So I lose karma points because I used to be a rowing drummer on the Rome-Carthage row galley?
To be honest, there has been a moral transgression in my life that I committed before my cluster headache began. To be prosaic, this transgression also wasn't really that bad. Given a hypothetical proportionality, half of humanity would suffer from headaches in this case, and a not-so-insignificant portion of the population would go up in flames.
I'm not very receptive to esoteric and theological ideas as a matter of principle. In times of weakness, when my brain convulsions have been laying on the grill of pain for too long and too often, I've still sought out those ideas regardless. Whenever the pain subsides a little, the same questions always come back to me: "Why me?", "Why is this happening to me?", and "What am I being punished for?"

Today I know that these questions don't bring anyone a step further. Acceptance and tolerance are the key words. Still, it's not pretty and it's not fun. But nobody ever said it was.
Should I ever again lean toward faith in a higher power or anything God-given instead of naked fate, I will save myself by remembering that God is not infallible, and its ground crew especially aren't.
Marianne Thomas made this same point quite wonderfully during a radio special on Émilie du Châtelet on SWR 2. Émilie du Châtelet and Voltaire subjected the Bible to a thorough analysis and drafted a critical commentary. And because she loves logical reasoning, she addresses the story of the creation with distinct irony: "How amusing that the first three days were marked by night and morning before the sun was even created on the fourth."

Title: Re: Introduction - You can't see what I feel
Post by AussieBrian on Oct 7th, 2018 at 4:34am
Another great contribution,  Rafael,  showing so many of us ClusterHeads make the same journey while not necessarily using the same path.

CH and religion has come up here a few times over the years and I'm always intrigued to note the number of sufferers who are also devoutly religious.  I don't have the numbers to back it up but have long suspected it's much higher than any average.

Let everyone seek help as they see fit,


Title: Re: Introduction - You can't see what I feel
Post by Rafael on Nov 23rd, 2018 at 1:46pm
The Lord

In 2009 I participated in a rehabilitation programme in Bad Wildungen, in the north of the state of Hessen. While conversing during the psychological consultation, the psychologist at the on-site clinic suggested that I give my pain a name and a shape in order to turn it into a person. Then I should reveal everything from this person's perspective - the entire story from the pain's point of view.
I then envisioned a figure similar to the god Thor. I had never intensely researched Germanic or Nordic mythology, so this was a purely intuitive name. The figure of a sovereign lord, the God of Thunder. It was he who does not suffer anybody beside him, whose power outshines everything, who darkens the sun, or who is the sun itself in which one burns and dies out.
He's not some good lord who is well-disposed toward his people. He is merciless, even sadistic. He lets his host bleed until they are down on their knees, limply following every command. So the lord, who, in the grander scheme of things, is really only there for a short period, is still always present. Omnipresent. He becomes God. The sufferer experiences the pain as religion. They do not seek our religion as an explanation for the recurring hurt, but rather that hurt is the religion.
I very often got the impression that I was a sort of game for the pain. Whenever I felt like I couldn't go on anymore, it took a short break. When I didn't want to go on anymore and there was nothing to be done, the pain would leave for a day. As though it just wanted to use me as its plaything. Like how a cat plays with a mouse it has just caught. Of course, the mouse doesn't stand a chance against the cat. But it can actually influence how interesting it is to the cat. The more intensely it struggles, the more fun it becomes for the cat
I've decided not to let the pain defeat me. But I must comply with it. It is always there, and it picks up on everything. The parallels between it and the omniscient Christian God are surprising, and sometimes terrifying. Prayer would be the wrong term to use, but when I hold an internal dialogue, it's with the pain, not with God.
To this day I don't know what it all looks like from the pain's perspective. Even though I have often thought about it, I can't put together a real sketch of its motives. It doesn't need me for anything. I don't feel that I am ultimately the host for its existence. So I have never found a better model than that of pure despotism.
Still, this thought experiment makes very clear how the behaviour that I consider to be the best way to address the disease actually looks. If I am subjected to pressure, I must promptly build up the appropriate counterpressure. If the pressure is so strong that I can't prepare any sufficient response, then it's important to make myself as unassailable as possible. To speak figuratively, it would be best to become liquid, because the strongest fist cannot hold fast to a liquid - it will simply trickle out between the fingers.
One could imagine the pain as a large fist raining down on me from the sky. I throw myself helplessly onto the ground, try to be as shapeless as possible, and simply wait out the worst of storms. Once the wind subsides - because its power has been exhausted for the moment - I lift myself up to defy the weakening tempest. It's quite practical to imagine things this way. At the moment when the pain is worst, the body instinctively curls into the foetal position. Rolled up to offer as little room for attack as possible. In these moments I always draw back on two different mantras. First I think to myself over and over, "Go away!" Once I feel like the pain is on the retreat, I append it with a little, "I am stronger!" It took a very long time to get used to this autosuggestion, but it works.
If we imagine pain as a tremendous arm pushing down on us, it luckily seems that it has to adhere to the laws of physics. The stronger the muscle pushing down on you, the faster it overacidifies and it can no longer be supplied with oxygen. Indeed, it is too strong for you to defend yourself against it. But it will run out of air and need a break, too. It is during that break that you can decide for yourself whether you will stay lying down or if you will stand up again.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Nov 25th, 2018 at 4:03am
The Question of Condition

The harmless question, "How are you?", has become a gauntlet that repeats itself every day. Almost no one who asks about another's well-being actually wants to know anything about it. And nobody wants to answer, either. Still, polite truisms are a frequent ritual for starting conversations. Where I'm from, indignation tends to manifest in the following manner:
Q: "Wie isset?" (How's it going?)
A: "Muss!" (It's gotta!)
Chatterboxes will occasionally opt for the longer expression, "It's gotta! And you?». Humorous contemporaries like to counter with, "It was going yesterday." But actually, the only permissible responses are, "I'm okay", "I'm good", and maybe "I'm fine". In my case, a rather more philosophical reply would be more appropriate, such as, "That's a complex question to which I cannot currently give a simple answer." But responses like that are usually best left for the doctor's office. Even good friends often ask me without actually having time for a real answer.
There was a long period of time when I would have had to answer any questions about how I was doing with a truthful, and distinct, "Shitty!" People don't do that, of course. But why not? For one, some may be reluctant to use such vocabulary. One doesn't really want to actually tell everyone - and possibly quite verbosely - what's wrong and how they're actually doing. And lastly, most of the time the person asking doesn't really want an answer. It's a ritual that has gotten out of control. Androids working on a spaceship can answer the question with a simple, "I am functioning within normal parameters." Normal people are caught in a maelstrom of absentmindedness. An undertow that begins with a supposed act of politeness. Yet the opposite of "good" is "well-intentioned". How polite is it ultimately to begin a conversation with a question to which the asker doesn't expect an answer? The polite phrase in turn becomes the actual act of impoliteness.
Yet no matter how correct or incorrect my philosophical perception is, it won't at all change that this question of feigned interest in one's own well-being in life will continue to be asked. And because it happens a lot more frequently than once per year, it's worth the effort of thinking about it. Many times this question has only confused me. I couldn't exactly formulate how I was really doing. At the time when I was asked I may not have had any acute pain at all. An hour before, sure. Or the pain disappeared thanks to an Imigran injection. On top of that, I may have woken up a number of times in the night because of the pain.
No, in moments like those I don't know how I'm doing. I'm happy when I realise that I am, that I actually exist. How should I answer the question now? After all, the answer doesn't matter, because the question is nothing more than an empty phrase.
What did matter to me was the fact that I also confused myself when this question was posed to me. Now what should I do? First it's helpful to tell whether the asker has any sincere or professional interest, or none at all. Is the question being asked by a doctor, therapist, or concerned friends? Or from a neighbour who happened to see me while out shopping?
In the second instance - the cliché - I tend to reply with the most negative of the generally acceptable answers: "I'm fine." I could also opt to volley with, "I'm fine. And you?" However, in the event that the asker does not tick in the same way I do, I could cause a possible double spiral with an uncontrollable undertow effect. So it's better to just leave it.
I tried for a time to deflect the question with humour, like replying, "Is it bad people who are always doing well, or the other way around?" I always preferred that over a positive answer that didn't match up with the truth.
Whosoever can do it naturally has an easy time of it. The ghost is gone with a simple, "Good." "Pretty good" also works for those who want to weaken it a bit. An empty phrase should be treated like one. It is not the specific asker's fault that it causes such puzzlement in me. As is often the case, one's own evaluation is also the pertinent and impressionable factor.
Now I'd like to go back to the first instance. We're asked by somebody with actual interest, be it a doctor, a therapist, or a friend. Those who work in a healing profession have naturally earned an honest answer, because anything else would not help the matter. I have since begun asking friends if they want a polite or an honest answer. And that works extraordinarily well.
But no matter how much I prepare myself, what steps I take or concoct, I simply don't like being asked about how I'm doing.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Nov 26th, 2018 at 3:34pm
Two-Class Society

How often is frequent, how intense is severe, and how much is too much?
Pain cannot be measured. It very likely, almost to the point of certainty, differs from one person to the next. Years in the self-help group have shown me that every sufferer has their own cluster headache that can also morph over time. Along with the many minor differences that also cannot be measured on a scale, there is also one major difference.

Have you ever fainted?
All pain patients - pain because of headache, back pain, rheumatic pain, or cancer pain - are asked to measure the severity of their pain on a scale from 0 to 10, whereby 0 always means no pain, and 10 equals the greatest pain imaginable. Now, there should be a certain unanimity about what no pain feels like. But from my own observations I know that the opposite end of the scale behaves quite differently. How is one supposed to know what the greatest pain imaginable is without having experienced it?

My personal scale is ordered as follows:

0.      No pain
1.      More like discomfort than pain
2.      Slight, but distinct pain
3.      Pain
4.      Pain that does not allow me to concentrate on anything else
5.      Pain that still allows me to be social if absolutely necessary
6.      Things get really unpleasant from here on out
7.      The pain begins to eliminate all other perception. I no longer notice whether it's hot or cold, even if it's way too cold
8.      Loss of fine motor skills, I can no longer tie my shoes
9.      I am not receptive, I do not register the sensation of touch
10.      Frenzy, self-harm, fainting

I did not invent these steps in the scale. I have personally experienced them. Each and every one of them, and many more. Experiencing the last step - fainting from pain - splits cluster headache sufferers into two distinct camps. Whether or not the sufferer has woken up on the cold kitchen tiles in the middle of the night or not changes their perspective. This very experience shaped my attitude greatly.
I used to believe that it "has to leave somehow". Slave away until the cows come home. Grit your teeth. I don't have anything anyway. It only hurts. And then it came one time - my acquaintance with the cold kitchen floor. I had no idea how I had gotten to that point, nor how long I had been lying there. It was still dark outside, and it was cold. My eyes opened again and I found myself over-chilled on the floor. I was happy that my head didn't hurt anymore, that I was alone, and that nobody had seen me like that. And I was afraid because I was alone and nobody was there to help me.
"Personal responsibility" is the key phrase. We should be responsible in the way we treat ourselves. Still, we often don't: "Don't make such a fuss! Things will turn out okay!" In the meantime I do make a fuss and pay attention to my strain threshold, because my body has made it clear to me in no uncertain terms that sometimes things don't turn out okay.
That frightening first moment of helplessness permanently helps one find the brakes, and then to step on them when need be.
"The world goes on," as the saying goes. Yet those who have passed out from pain learned that sometimes the world doesn't go on. It's just the end, curtains, end of story.
The German band Wolfsheim expressed the following in their 2003 single "Kein Zurück" ("No Going Back"):

The world is beautiful and full of colours.
Until one day you realise,
That not every goodbye,
Means there will be another hello.

Even though songwriter Peter Heppner's words are certainly about something else entirely, I find them profoundly fitting.

Title: Re: Introduction - You can't see what I feel
Post by Mike NZ on Nov 27th, 2018 at 1:20am
Good posts Rafael - thank you.

Interesting to compare your scale with the Kip scale (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

0. No pain, life is beautiful
1. Very minor, shadow's come and go. Life is still beautiful
2. More persitent shadow's
3. Shadow's are getting constant but can deal with it
4. Starting to get bad, want to be left alone
5. Still not a "pacer" but need space
6. Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"
7. Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
8. Time to scream, yell, curse, head bang, rock, whatever work's
9. The "Why me?" syndrome starts to set in
10. Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

The alignment is pretty close, but the behaviour patterns described show that Kip (who created the scale) appeared to be a "pacer" during his intermediate level CHs and you're not. This is a good example of how pain and our response to it is very much a personal reaction.

I passed out from the pain of a few of my early CHs, which in hindsight from having experienced stronger CHs later on were not that painful is interesting. I've also passed out once from CRPS pain, which is something along with CH that often features on "top 10 most painful conditions" too.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Nov 27th, 2018 at 4:54pm
Quo Vadis?

You are what you are and you have what you have. But what good does that do in a normal life? Taking stock, the following is revealed:
I am sick and will remain so. My supply of medication is secured and my doctors even respond to e-mails in an emergency. I am known personally at my pharmacy and medical store. Nobody puts obstacles in my way. The logistics are there. My friends and family also know the score. Stories are shared at the self-help group, and my yoga class also promotes balance. Both also provide social contacts for free.
It almost sounds like a beautiful life. And it would be in an advertisement. The pharmaceutical companies like to use ads to suggest that after you take their medications, you'll feel even better than if you had never been sick at all.
But stepping back from the rosy world of marketing into the not-so-colourful reality, the first sentence always applies: I am sick and will remain so. And a regulated supply does not equal the elimination of symptoms.

There is no doubt that work and relationships are two central elements to any person's life. How does the disease, and working with it, specifically fit into one's professional life? (Observations as to how disease and relationships intermingle will follow in the next chapter.)
To be up front about it, work and cluster headache do not go together in many ways. It is quite exhausting to reconcile the two in some way. And it's hard for me to not get angry about this topic. It's even harder to find out what, or whom, I should even be angry at.

But I'd like to start from the beginning. My academic career was unremarkable and linear. After kindergarten and primary school I attended the Gymnasium, and graduated with a diploma after the normal period. I performed my community service thereafter. Then, with my university entrance qualifications in my pocket I attended the Ruhr University Bochum to study mechanical engineering. The extremely impersonal studies at this grey, concrete palace was not an environment entirely conducive to my own sense of happiness. I also had to involuntarily leave my parents' home around this time, and I was left to digest a not-so-pretty separation.
I counteracted this first bump in my life by changing colleges and attending the Bochum University of Applied Sciences. In retrospect I was not particularly worried about the future for the following period of time, to put it mildly. I worked odd jobs more than I studied. It got to the point that I was only attending classes once per semester, and that was just to enroll again. I was what is referred to as an eternal student. But because I was getting good work at the time, I wasn't much bothered by it.
I led my life away from a regulated nine-to-five office job. I wasn't really a dropout who sails around the world, but more like a soldier of fortune, though not an unhappy one. German TV-Truckers Franz Meersdonk and Günther Willers had had in impact on me. I got my truck driver's license and became the Jobbing King at a forwarding company. I was doing well, my job was fun, and I got the necessary respect in the form of cars fresh out of the factory. It was a nice time. It could have just gone on like that, and I would have stuck with the job. But when the company moved in the late 1990s, things would go differently from then on. I had to commute a very inconvenient distance.
At this time the EDP industry was booming and was now known as IT. Companies were all employing someone who knew how PCs tick. In the current of this IT boom I was easily able to switch from trucker to IT support. I actually knew enough about computers to be able to hold my own at my first job in the field. I also learned quickly on the job and was even able to improve my professional skills.
Admittedly, I was still an officially registered student. Yet I had not seen in the inside of a lecture hall in a long time, and I had taken just as few exams in all that time. I was now nearly 30 years old and was used to my life as a soldier of fortune. Nothing unusual happened to me. To look at it practically, I had at the very least arranged for my own survival, but not my future. I knew that, too, but I masterfully suppressed it. After all, I didn't have the worst job at a large computer retailer in Dortmund.
While this job went very smoothly, and I had a partner in my personal life whom I really wanted to be with, the disease slowly reached its hand out to me. I woke up ever more frequently in the night with infernal headaches. I tried one common headache medication after another, and in greater quantities, to no avail. Despite an entire series of tests, not one doctor was able to say what was wrong with me.
At least I knew that it wasn't a brain tumour, which I originally had a distinct and great fear of. Because these extremely severe pains always struck at the same location, I was certain that it must be something in my head that doesn't belong there. To this very day I still have the MR scans of my brain that thankfully don't show any such foreign bodies.
Three things then happened shortly thereafter. The pain not only came at night, but also during the day. The gold rush of the IT boom was over, and my company slowly began laying off all workers who didn't have children. This left me out on the street. Plagued by pain and unemployed, I no longer offered my partner any serious prospects and in this part of my life, too, I was soon out on a limb. (I will explain why I accepted this decision so easily in a later chapter.)

With that, my life collapsed into a shambles astonishingly quickly. Just turned 30, no professional prospects, and suffering from an unknown disease, I sat at home alone every night, knowing less and less what to do with my life. I thus found myself in the middle of a classic spiral of depression. My finances were approaching zero. My bank account was empty, my car was broken, and I had absolutely no idea how I would go on. It took a drastic turn of events in the form of a diagnosis of my disease just for me to get any kind of outlook on the future. After I finally knew what the enemy in my head was years later, I could deal with it first and then come up with ideas for a professional existence.
My CV was, of course, a disaster. With no completed higher education and with holes bigger than Swiss cheese, I had no need to form any realistic expectations of regular employment. Working independently was the fallback. So I tried holding my own by programming websites and repairing computers. It's no surprise that starting out is always difficult. In my case, however, continuing was just as hard. Anyone plagued by severe, constant pain for an average of three out of twelve months in the year cannot generate the finances to survive. I often had to cancel appointments, or hurried to the customer's toilet to take a shot of Imigran.
That was better than banging my throbbing head against the wall. In addition, the question wasn't how well that works, but for how long. Addled from the Imigran, I made more than one mistake and at least one time it would almost not have been able to be hidden or amended. I took this as a red flag, because the very real recourse claims following one serious mistake could not be my objective.
However, this episode was a step in the right direction. Thanks to contacts I had made and my disability which was now recognised, it was possible for me to have an education individually funded by the labour committee. Two years after signing the agreement, I passed my final exams and have since been a digital and print media designer: design and technology.
I had tinkered with computers for years, and in that time I learned that educated technicians are not necessarily more competent than I am. So I spoke before the Chamber of Industry and Commerce and was given the chance to take an external exam. Four months later I passed this test as well. Now I can not only call myself a media designer, but also a system integration technician.
It sounds good, and it also felt very good. Now everything could be good, or at the very least better. But, sadly, it wasn't. After my last exams I felt like I had fallen into a hole. Yet the headache journal quite prosaically revealed that the number of headache attacks had continued to rise one month before. If the exams had been just one or two weeks later, the result probably would have looked different. And although time and feeling would have been kicking off again, my head was very stubbornly thwarting my plans, because what followed was one of the most intense episodes up until that time.
Following my small round of exams was an episode at the epicentre of which I could not sleep for one entire night over 18 straight weeks, and experienced up to six attacks per day. At the end I had a new medication schedule and multiple treatments that helped me get back on my feet. I ultimately landed in competent facilities and was able to learn a lot about coping strategies and acceptance of the disease.
Regardless, it would take well over a year for me to turn my inward perspective back outward. That is where I stand now. Despite my handicap brought on by chronic illness, I now have two professions and am no longer without any higher education.
But my life story is by no means a textbook example. It will surely continue to be a source of furrowed brows and shaking heads among the decision-makers at HR departments. This doesn't bode well for my competitive chances. Not to mention that I misjudged myself with my choice of career. The employers of media designers and IT specialists are quite frequently small agencies who are, in practice, at the mercy of the needs, desires, and moods of the customer. In the advertisement the customer provides the required materials at the last minute at the earliest, but still sets the deadline for "yesterday". Of course this results in irregular work hours and peak periods of stress that I am no longer built for.
The modern world is a society of output that I can't keep up with anymore. Because I was a soldier of fortune in my first decade on the workforce, I unfortunately never put down roots that allow me to remain employed despite my disability. So I try finding a new field to work in. However, what that field exactly is has remained unclear both to myself and to anyone else. My disability cannot be fathomed, not by me and especially not by a third party. After all, pain cannot be seen and I have no way of predicting when the next episode that is so intense that I am completely unemployable once more will occur.
I only know that even in symptom-free times, I can no longer compete with healthy candidates. Even though cluster headache isn't a psychosomatic disease, every form of stress and overstimulation has palpable negative consequences. I have to consider whether that suits me or not in the interest of self-responsibility. I should even try not getting angry at the fact that I can no longer do things the way I would like to. That, too, is a form of stress and it leads to spirals with a current pulling in the wrong direction.
Presently, I'm fascinated by people who don't have a career in order to accumulate as much material profit as possible, but rather who pursue a career that fulfils them. Naturally I would be happy to not depend on material things, but career and wealth don't constitute worthy objectives for me anymore. I can't imagine being any happier with 5,000 euros per month than I would be with 1,500 euros. But someone with 1,500 euros is happier than they would be with 500. With income that low, the person is too close to the poverty line, and by definition they are even below it. Great restrictions have to be set, and a broken washing machine becomes an immense problem, and the result is more stress.
Isn't it wonderful that a severe, chronic disease that causes permanent disability makes one into a more frugal person?
Now to get back to the harsh world of work. Nearly every job ad seeks applicants who are as flexible and durable as possible. I have even found the word "stress-resistant" as a requirement before. The society of output cannot be proclaimed any clearer than that. When I read such ads all I can do is let out a quiet sigh. I cannot meet these requirements without hurting myself in the process. But then I keep on reading until I find the attributes I seek: "diligent" or "thorough".
So why not just go back to school for a new trade? Because I'm not a bricklayer with bad knees, or a construction worker with a bad back. I'm severely disabled. I have actually been invited to such interviews after my benefits expired upon 78 weeks of unemployment. And the problem wasn't that nobody wanted to help out. Rather, it's finding something suitable. To exaggerate slightly, I suffer from a social intolerance.
This situation always results in creative to ludicrous ideas: professions often beyond the realm of most normal people, like glass eye designer, stonecutter, or shepherd suddenly seem quite interesting. But there are far too few open positions in these fields, and so the ideas remain ideas.
For a long time there was no clear solution to this dilemma in sight. The only thing that was certain was that trying nothing is also a conscious decision - and the worst. You can never be one hundred per cent sure that something is going to work. But you can be absolutely certain that doing nothing will never work. Either way, a solution can suddenly appear out of thin air. Things can happen that can neither be planned nor predicted.
This is the fortune that befell me when I ultimately found a suitable job. When all is said and done, my only confession is that I am not built for a full-time, 40-hour workweek, and perhaps I never will be. But this applies to all jobs, and I can't hold that against them. Once it was out of style, I was able to learn that there are still professions in which a human being is treated like one instead of walking capital.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 2nd, 2018 at 6:57am
Relationship Issues

When I talk about this topic it's easy to get angry, but it's much harder to be clear as to what I'm actually angry about.
I live alone. I have lived alone for most of my life. I have no dog, and there isn't a ficus to be found in my flat. If I had a dog, I guarantee it would have had to do its business right here in the flat from time to time. Every potted plant would have wilted. Cacti wouldn't stand a chance.
When I was living with my parents I unfortunately never learned what a happy family looks like. So as a young man I had no ambitions to make one for myself. After some adventures, some significant and some not, I found myself in a situation in which there was a woman whom I felt I wanted to grow old with. Wild oats had been sown, the sea had calmed down, and I felt like I was in the right port. It was sort of the wrong time to get sick, but that's the way it happened. Night after night these pains, and nobody who could explain them to me. I thought it was a brain tumour and was no longer very good at creatively planning a future. My partner had (and probably still has) a distinct sense of security. A civil servant who always had about two months' wages saved up in her checking account. That doesn't fit particularly well into the life plan of someone who's just starting to give up.
I lost my job promptly thereafter, and I felt thoroughly abandoned by everything that can abandon someone. Job gone, woman gone, and always the pain that not one doctor could explain. From my perspective at the time, I was the textbook example of a social failure. It would take years for me to dig myself out of this hole. Why bother talking to another female? So I can get a headache during a date?
I since learned that it was cluster headache, and I had medication so that I could at the very least deal with it better. And there actually was another female who crossed my path and who enticed my spirits to come back out of the mausoleum that they had retreated into. But these spirits had to endure a long struggle with my mind. Over - no joke - the span of one whole year my journal is filled with frequent, imploring entries. "Forget it!" I ordered myself with changing reasoning. But it ended the way it had to end. Ultimately, the beguiling aroma won.
She, a highly energetic and egomaniacal dragon. I, the opposite, and sometimes too careful. Whereas she considered the impossible possible, I would let an opportunity pass me by out of excessive precaution. This combination can make a strong team, and for a while it worked for us. With her I was able to get a few things moving that I would have needed much longer to initiate if I had been alone.
In my last serious relationship I had learned that the partner's problems are always amplified when they sympathise. The other's pains also hurt them. But when it comes to cluster headache, the pain of an attack just has to be accepted. In that moment I don't want consolation, I don't want soothing words or any type of closeness. I am alone with the raging in my head, and that's how I want it. And so every time, I snub whomever is there at my side at the time. It may happen multiple times per day.
Yet when the attack is over and the pain has faded away, and I - wrung out like I just ran a marathon - push my bottle of oxygen away from me, it looks very different. Even though it was long ago, I can still remember well how nice it is to not be alone in those moments, and how much power an embrace can give when it happens.
Interestingly enough, I've always been more attracted to woman of commanding size whom I can look in the eye without having to bend my neck. It also adds a more protective nature to embraces, and that can't function effectively when my partner is a head shorter than me. I have to be able to hold myself tight instead.
This also requires a partner who sits next to me unaffected, and then acts like a commando and is there exactly when I need them. New lovers do this very well, but as routine drags on it becomes more difficult. At least my fortune was not meant to last that long. Our differing natures, which at first had made us strong, were still unable to endure a longer pain episode in the end.
I felt challenged and did not want to surrender myself to the constant pain. I ended up taking too much Imigran as a result, and ultimately found myself in an even deeper hole. I simply overdid it. After all, the opposite of good is well-intentioned. The rest of the story all boils down to a classical allocation of roles. A strong woman looks for an even stronger man. And I was not able to hold that role in the long term.
For the sake of emphasis, a partner who has her own tendencies to be the alpha provides the necessary lack of empathy in order to be able to just watch an episode happen. At some point, the driveling rag that remains will no longer be enough for her.
The partner who does not need a dominant man by her side is very likely to empathetic to be able to endure all of the constant suffering next to her. And so I implore to all sufferers blessed with a partner in the spectrum between the two poles above, and who constantly strengthens them and doesn't get in their way: treat these people with a little more care than somebody should treat the person they love.
And what about those who throw in the towel and vanish into thin air? Well, I'm certain that this isn't a problem specific to clusterheads. One could be paraplegic or go blind from an accident, or suffer from life-changing chronic diseases like multiple sclerosis, Parkinson's, epilepsy, or dementia. With the cards dealt to me, I am not the person I once was. And if the sufferer could choose, they would get rid of their disease. The partner has that choice. Can I be disappointed in my partner simply for doing what I would do if I had the option?
I didn't see it that way at the time, of course. I felt as though somebody had torn my heart out and pushed me off of the narrow plank on which I had been treading through life up until then. Pushed me into a freefall toward eternal oblivion. But nobody is stopping me from reassessing a situation. I do not feel good about it, but I feel better.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 5th, 2018 at 2:54pm

"If you were to be silent, you could be helped," is a phrase the deeper meaning of which has long eluded me. Acceptance of a life-changing disease takes time, but it's necessary.

Men do not stumble over mountains,
but over molehills.

More than Pain

It is documented in a medical assessment written about me that I use uncommon terms and descriptions for my symptoms. One astonishingly long assessment in particular must at least have taken longer to write than the time spent with me on site in person. In any case, my uncommon choice of phrasing, according to the assessment, is that I have described my situation as a "complete artwork", and specifically that I must have coined the term "sleep paranoia". It's not enough for an entire work of art, but I did exhibit some symptoms, it continues.
     The assessment states that sleep disorders, concentration disorders, verbal disorders, forgetfulness, and a long-term loss of libido are direct and indirect consequences of the frequent pain. If the pain just lasts long enough, a decrease in physical and mental performance can hardly be prevented. This is all coupled with anxiety and panic attacks. The resulting depression is almost unavoidable.
The following independent symptoms are listed specifically:
•      Sleep disorder G47.0
•      Concentration, reduced F98.8
•      Light cognitive impairment F06.7
•      Other speaking and linguistic disorders R47.8
•      Phobic disorders F40.-
•      Depressive episode F32.-

So there's a lot to treat!
But still not enough. Then there's the alternation between aggression and apathy, auto-aggression with a tendency toward self-harm, lack of motivation and other vegetative disorders, as well as photosensitivity and the aforementioned solar intolerance.
This part of the complete artwork is solely based on the foundation of the constant pain. My constant struggle for a tolerable body mass index is not directly based on it. The pain can't do anything for my tendency for obesity, but it weakens the necessary discipline. There are some medications that don't have a positive impact on this either. Quite logically, this leads to a pain episode also manifesting in weight gain. Actually it's entirely unclear whether my rheumatic pain that has primarily arisen during the cold season for some years now is in any way associated with the cluster headache. Still, they don't help my overall well-being in any case.
That alone would be enough, but the complete artwork includes another component. I grew up under a father who was diagnosed with a narcissistic personality disorder that, year after year, met more criteria for somebody with compulsive hoarding. He is also an alcoholic. I am not saying that he would suffer from these diseases, because others do that already.
Most people will be familiar with the notorious image of a garbage hoarder. For us, it started out with a basement piled up to the ceiling, and then the first garage, followed by the second, ultimately ending with the entire house. Shortly before I turned my back on my parents' house my father began storing our regular household trash in the garage so that he could look through it all again.
Not everyone may know what somebody with narcissistic personality disorder looks like, however. Such people have an overblown sense of importance, and they hope to take on and earn a special position. They exhibit exploitative behaviour and a lack of empathy.
People affected by it also show marked sensitivity to criticism, which they often understand globally. This evokes in them a sense of rage, embarrassment, or discouragement. That's why it's not uncommon for a web of intrigue to be woven among the family in particular in order to cast themselves in the "right light". Their perception of actual circumstances is often severely blurred, and is either beautified for the benefit of the narcissistic personality, parts of reality are deliberately falsified, or omitted altogether. The goal is to restore the respect that the narcissist believes has been toppled. This is often done through great self-pity, and combatted with complaining and begging to arouse other peoples' worry and reinforce the narcissist's own innocence. When I learned about the diagnosis and read its symptoms for the first time, it was clear that every trait is present.
So how must one envision such a person? Like someone without pride, and who pays no consideration to anyone and anything! For example, my progenitor got a dog and took it on a visit to his mother - my grandmother. She asked him not to bring the dog into the house. At the time my grandmother was an old lady well over 70 years old, and she simply wasn't comfortable with it. It certainly wouldn't any inconvenience for the dog, since he was allowed to stay out in the yard. My father simply didn't care about his mother's own wishes, and he brought the dog into her home. That in itself isn't the end of the world, but it's a typical example of how people like that behave. Coupled with a propensity for bravado and the tendency to put things in the "right" light, this results in a lack of understanding of circumstances in one's own environment even after decades.
To give another example: in my childhood bedroom my father installed an adjustable panel under the ceiling that could be lowered, and a race car track and model train set were mounted onto it. It was cool, no doubt. Admittedly, it was also something special that nobody else had. So I still have uncles, aunts, and other relatives who believe that my progenitor actually took care of his children.
In this instance I actually got to benefit, but my father did not construct this extraordinary kid's room to make friends out of my sister and me. Rather, it served as a vehicle for his self-presentation. The entire thing was displayed happily. The methodology was actually effective, too, because there are people who still remember it and the thing they actually draw from it is, "You kids actually had it really good."
Yet those same people either forgot, or did not notice at the time, that the same actor would have a drop too much at every family event and then take the wheel with two kids in the back seat. You could also ask them who ended up giving water to the dog. It wasn't him, of course. It was my grandmother.
This lack of empathy was also present in our father-son relationship, and it was very distinct as early as my childhood. No matter what I did and how much I tried, it was not good enough for my father or he simply wasn't interested, regardless what it was about. I even "failed" when sweeping the garage and he would just do it over again. There was simply nothing that met up to his standards. The fact that he treated other people the same way did not make things any more bearable for me as a kid.
Luckily, the worst aggressors are still just people, and they are neither perfect nor infallible. My progenitor was a competent craftsman, but once things got moving he couldn't find where to start. So in my youth I turned to things that he had no reference to and that he couldn't judge. When I was twelve years old I bought my first computer, a Commodore C64. It let me create a world free from my father's criticism.
Yet the ramifications remain frighteningly deeply rooted to this day. When someone acts like my father around me, I have to take a deep breath to prevent any spontaneous acts of defiance from myself.
These experiences didn't exactly work wonders for my self-confidence. Now, with my sickness, I'm no longer able to meet expectations. At least not for the time being. This is where childhood conditioning meets neurological disorder, amplifying all of their psychosomatic effects.

We have a complete artwork, a damn tall and wobbly Jenga tower that is hard to stabilise. But hard is not the same as impossible. Discovering this connection was shocking, but also a source of motivation. My father is the last person I want to see affecting my life. Even today he still terrorises parts of my family, and has disrupted their cohesion for the long term. The last thing I can allow is for him to worm his way back into my life from afar, even though as a child I never learned how to build up the self-confidence that is now required to endure this disease. Now I have to. Thankfully, adversity and anger are powerful motivators!
My personal foundation of the complete artwork is supplemented by some general effects of chronic illnesses and disabilities. The State Self-Help Association of NRW e.V. and the Network Office for Women and Girls with Disability/Chronic Illness NRW are currently conducting a study on depression and psychosomatic disorders caused by disability/chronic illness, funded by the AOK Rheinland/Hamburg and AOK NordWest health insurance companies. So far the study has shown that, regardless of the type of illness, an entire range of effects manifest in all sorts of patients. When the first results of this long-term study were presented during a presentation at the 8th roundtable discussion of the Association of Statutory Health Insurance Physicians Westfalen-Lippe, I was sitting in the auditorium and felt as though it was my story being presented up there.
One physical symptom which I am obviously not the only person subjected to is known as general fatigue. This in itself entails a long list of physical problems:
•      Loneliness and isolation: If the number of attacks is so high that I will most likely have to expect an attack in public, I keep my public presence to a minimum.
•      Overload: If I lose too much time because of frequent pain, this sensation sets in very quickly.
•      Helplessness and fear: I never know when it will begin and when it will stop again. I can no longer act as though I'm reacting to symptoms.
•      Fear that the disease will return: Even in symptom-free times, the sword of Damocles that is the next attack is constantly hanging over me. I have experienced the sudden recurrence of the disease all too often.
•      Fear of becoming a burden to my partner, and a lack of understanding by my partner: Because I learned how to be unimportant when I was still a child, this applies to me far more than I would like.
•      Lack of sensitivity from doctors: I'm fortunate to have left this behind me.
•      Working with officials or bureaucratic structures: This was often quite difficult because of office employees' ignorance of disability- and disease-specific strains and needs. Since I began owning my own disabled person identification, however, these strength-sapping encounters are much more uncommon now. The other person's level of knowledge doesn't increase, but with an ID it's clearly assumed that the impairments are serious.
•      Work and finances: Money generally improves one's scope of opportunities. A lack of money traps one in the opposite situation. Living with chronic diseases is thus distinguished by lifelong limitations, deprivations, and exhausting encounters.

The World Health Organisation (WHO) defines the conditions for health as follows: "The prerequisites for health are peace, shelter, education, social security, social relations, food, income, the empowerment of women, a stable eco-system, sustainable resource use, social justice, respect for human rights, and equity." But under such conditions it's hard to develop and maintain the vital energy and joie de vivre, energy, and optimism that make it easier to deal with sickness-induced stress. I have come to understand it as a challenge to work out and apply my own management strategies despite this.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 6th, 2018 at 3:34pm
15 Minutes

One of my most concrete handicaps as a clusterhead is the lack of ability to plan my life.
Time passes me by when I'm not doing well. Time even passes me by when I'm doing well, because I have to keep my disease organised.
Because the disease is not sufficiently well-known and doesn't have a terrifying nature like Parkinson's or multiple sclerosis, the fight for acceptance takes up far too much time. I have long thought that it is time completely wasted for no reason. But because the disease and the pain associated with it cannot just be wished away, I have the option to expose myself to everything that may come my way, like a cork in the ocean. Or I can prepare myself, as I describe in the chapter "Logistics of a Chronic Illness". In the meantime I have learned that the effort has been, and continues to be, worth it. I simply have to keep depositing into this account for a while before any profits are generated.
Yet it still eats a lot of time. And sometimes it eats too much.
The average nighttime attack lasts about 30 minutes. What exactly do these 30 minutes mean? I measure it as the net pain period: the specific period in which I sit with my breathing mask over my nose, next to my bottle of oxygen, trying to breathe peacefully and evenly, and to remain calm despite the pain. After a few hundred times I actually became rather trained to it, and I'm getting ever better at it. I was asleep before these 30 minutes, then I had to wake up, and afterward the pain has forced me awake to the point that I can't just fall back asleep right away. This equates to an interruption of my sleep of at least 60 minutes.
When something like that happens occasionally, the body can learn to cope with it. But when it happens every night, it can deplete the body. I ultimately torture myself. My own experience tells me that if I want to compensate for the disruption to my night's rest, it's not enough to just make up for the lost time. This time can certainly be doubled, leaving us with two hours. Together with the disruption, 30-minute pain attacks mean that one would have to wake up an entire three hours later than someone who treats their body responsibly.
That's the calculation for one nighttime attack. What does the projection for up to three attacks look like? This adds up over a number of weeks. My personal record sits at 18 weeks during which I could not sleep one entire night. If anyone is able to maintain a normal schedule despite that, I respectfully tip my hat to them. I cannot do it. My journal includes this entry for a day following three nighttime attacks: "I can still feel the imprints from the freight train that must have run me over in the night."
In addition to the nights are the days. Here I have the advantage of being able to recognise an attack in advance through its warning signs. At night the pain usually tears me out of my sleep. During the day I feel the harbingers, because my attacks have an advance period of about 15 minutes. These 15 minutes are also the only thing I can take stock of. I don't know if I'll be better in a half-hour, and I am rarely able to make a prediction. Cluster attacks come from out of the blue with this little warning sign, at any possible and impossible opportunity. While taking a walk, riding my bicycle, going to the movies, taking a holiday or going to a funeral. And yes, the first night spent with a wonderful woman.
Upon experiencing it hundreds of times, I've grown cautious. Sometimes I'm directly on the border of paranoia. At least I only very begrudgingly make appointments in the midst of an attack, and am quite reluctant to set a schedule. All too often have I not been able to observe appointments, or had to cancel or at least interrupt them, because of entirely unpredictable headache attacks. Too frequently have I crawled up in some corner or hidden in bathrooms. For some years now these moments have lost some of their terror thanks to my medication, and Imigran in particular.
But the 15 minutes are still there. I will never know how I'll be doing in half an hour.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 8th, 2018 at 11:55am

When people are worried about something, they like to say, "This is giving me a headache." And so an everyday colloquialism ends up breaking the neck of the seriously, chronically ill. Tumours aren't thrown around quite so lightly. "Tumour is when you laugh regardless," would be considered dark as night.
There are a number of expressions found in everyday speech that all reveal how external influences affect well-being. For example, an uncomfortable conversation can "make your stomach queasy", and a fright can "make your heart go up to your mouth", or even "curdle your blood". If something makes us mad, this can cause make our "veins pop" and we could "jump out of our skin". Then it that doesn't help, we're "sick of it". We also get "pale from fear", "red with rage", and our hair can "stand on end".
These psychosomatic connections have merged into colloquial speech. And yet the headache has been taken a step further. Headaches have become established as an international excuse for the displeasure at physical proximity. This leads to such cheap jokes as, "Here darling, your Aspirin. - But I don't have a headache. - Great, then we can shag." And the schlager song "I've Got a Headache this Evening" by Ireen Sheer stayed on the charts for weeks, and to this day it remains a standard every time you want to go nine-pin bowling.
Headache is an accepted, momentary ailment, but nothing more. It can even serve as an excuse and apology. It is tolerated as the result of excessive alcohol consumption, but is not considered a serious sickness.
It goes without saying that these are indeed headaches in both cases. Yet this terminology, and its sometimes ridiculous social entanglements, are at fault for the trivialisation - and thus the lack of acceptance - of the headache as a serious illness. Personally, I would much prefer it if the WHO were to use the term erythroprosopalgia in its diagnosis classifications instead of "cluster headache".
When somebody is asked what disease they have, the patient experiences clear differences in the intensity of their concern. Cancer always gives way to great concern, as do Parkinson's or multiple-sclerosis. This is where you spontaneously think, "Thank God I don't have that." And that does not happen with the term "headache". The initial thought here is more along the lines of, "Yeah, I've had that." This small change in perception and reaction by the other party has ultimately had a major impact on people suffering from it.
There is no escape from this vicious cycle, let alone the stupid sickness. All the same, public relations work and the associated clarification have improved the situation somewhat.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 15th, 2018 at 3:55pm

There is one characteristic that likely sets cluster headache apart from all other classes of headache: the unease!
No, I don't want to lie down. And I don't want to have my peace. What I do want in that moment, though, is to be left alone. I don't want anyone to see me like that. In the moment when I'm experiencing pain, I feel naked and vulnerable. That is when I want to be left to myself, and in that situation I express myself on a spectrum ranging from blatantly obvious to harsh. It's hard to be nice when I feel like there's a red hot knife stuck in my eye.
Over the years I have learned to control my motoric unease, as it tends to intensify the pain. Now I simply try to strain only the muscles that are absolutely necessary, and not to spasm under any circumstances. The strategies imparted by yoga help me here.
But the tendency to respond to pain with pain in turn is deeply rooted. Every attack arouses memories of times when I didn't have any medication to alleviate the ache, and when I was entirely exposed to the raging in my skull for hours on end. Sometimes I still feel the painful knuckles that used to bleed when I would punch the wall during an attack. These circumstances do not make one into a gentle lamb, and instead develop an inclination to devolve into a hooligan.
This energy can be used to get excited about everything and everyone. There are certainly enough reasons for it. Doctors who can't help someone, friends who don't understand them, and jobs that have been lost. One does not get a lot of that. But it has also taken a long time for me to adopt this view. Nowadays I try to collect the energy and consolidate it so that I can stand back up when the time is right.
Should I have an attack during an occasion I cannot immediately flee from, that notorious question is posed to me: "Are you not feeling well? Don't you want to lie down?" So I always have to hold myself back a lot simply to say, "No," and not overreact by shouting in response.
The oft expressed assumption that headaches have psychosomatic causes goes in a similar direction.
I quote: "Are you feeling burdened by something that could be irritating your head?"
The fact that I suffer from constant headaches is almost the only thing that is burdening me. Even though it's well-intentioned, kind, and serious, IT'S ANNOYING! Nobody would even think to ask me questions like that and then make corresponding suggestions if I suffered from a more proper disease like cancer, multiple sclerosis, or Parkinson's.
The constant headaches can easily be the cause for a wide variety of other symptoms. The headaches themselves, however, have no mental causes. I have been absolutely certain of this for years. Too often do I experience attacks at times when they have no reason to occur.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 16th, 2018 at 4:06pm

A number of symptoms result in self-destructive behaviour. It is usually interpreted as a method for alleviating stress, rage, and self-hatred. But we clusterheads are also a little different from everyone else. Our motivation is the principle of counter-pain. Admittedly I'm not aware of any scientific studies that verify it, but I am certain that it is more than simple imagination. We can only have pain in one spot. The pain is, biochemically speaking, the brain's reaction to the presence of its neurotransmitters. If multiple parts of the body send out pain signals, only the area with the greatest intensity will be examined. And therein lies the problem: the intensity. It must be high, very high.
The number and type of potential injuries reported by others is shocking. They include breaking their own nose, or shattering their sink with their head. Broken toes or head lacerations from "encountering" other objects. From the bathroom mirror to the car park wall, there is a long list. Whatever was in front of the person at the wrong time. Some have even pulled out their own teeth.
Personally, I know the urge to slam your head into the nearest wall, but I have long been able to control myself, thankfully! I have stuck to punching walls, tables, and furniture. Tables tend to be very stable, kitchen cabinets not so much. They can easily be damaged by the human fist. Unfortunately, the hand hurts for days after that. Walls, of course, are among the most unwavering and patient of objects, based on the layer of blood stains. The knuckles can still leave imprints on the plaster, however.
Sound gruesome?
It was.
But there is some good news: it's all behind me!
Now that I have oxygen and triptans at my disposal, I have not had any such impulses as the result of an attack.

Title: Re: Introduction - You can't see what I feel
Post by Skyhawk5 on Dec 17th, 2018 at 12:15am
I remember having the same symptoms in the begining of my 30 yrs of CH. Pure horror. I learned that any thoughts of ending the attacks permantely, are only thoughts of ending the PAIN. Without it I am fine.

Learning to live with CH takes work by us, not depending on our Doctors. I still suffer from CH, but "I" have learned how to control it best for me.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 17th, 2018 at 1:30pm
How Does It Feel The Morning After?

Someone who is sick waits until they are healthy again. But someone who is chronically ill has to divorce themselves from this hope. At some point I could no longer imagine how to even lead a normal life.
Because of the spasmodic course of my disease, I am continuously faced with symptom-free - or at least nearly symptom-free - periods. That is fortunate. Realising this, though, is always a new challenge. After weeks or even months of one episode there is still that one first day of no pain, the first night uninterrupted by the stampede in my head. It's hard to describe, this moment, because many thoughts and emotions are stirred up at once. On the one hand it's unbelievably soothing, even euphoric. On the other hand I have all too often had to mourn the passing of a short spell of relief.
Still, I have not been able to build up a reliable gut feeling in all these years. This would also render a fundamental element of cluster headache ineffective, because I never know how I will feel in half an hour. This typically places me in a conundrum. My body enjoys the period of relief, and urgently needs it. My head wonders how deceptive the peace will be this time. It takes some discipline not to fall into lethargy and to simply wait until next time.
Pending this discipline, there is also the question of what I will actually do with my earned freedom. I used to try catching up on lost time and primarily tending to work I had fallen behind on. Or rather, I would attempt to do so. There was always far more left unfinished than I could hope to catch up on. It's a Sisyphean task. The attempt at breaking down pressure and emotional stress in this way usually did not work. Now I try very hard to adhere to a clear system of priorities.
At the top of the list is logistics. It's important to always have enough medication and oxygen bottles at home. As a result, it's necessary to separate tasks that can be postponed from those that can't. Some things become more complicated if they're set aside, and others just gather dust. Bills should be paid on time, but windows can be cleaned later.
It's also important to stimulate the soul. This step cannot be put down in numbers, so it's hard to find the right balance. I indulge in an even combination of leisure and movement without any guilt. And I can tell that I feel better following that formula, even though this behaviour almost certainly prevents any financial success. For me, the rungs on the career ladder are simply too far apart. Thankfully money does not make one happy, just calms one down a bit.
At some point, the first painless day was followed by the first painless week. I could always prepare for it, because an episode would never suddenly end, but rather ring out gradually. From multiple attacks per day to one attack per day. Then every other day, every third day, and then one per week. Even less and I no longer consider it to be an episode, and it doesn't happen very often. But that's not to say it never happens.
At that point the plan is fairly simple, in principle anyway. Return to normalcy! Of course, that sounds much easier than it is. My notes in the headache journal help here as well, and it is especially clear - especially in the visual pain scale - that the number of attacks continues to decrease. I know from experience how unlikely it is that the number of attacks will suddenly begin to rise.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Dec 30th, 2018 at 1:26pm

It's not over, it's just taking a break.
This sword of Damocles is constantly suspended over me. Even if I haven't had any attacks in months. The next attack will come for sure. This certainty is even stronger than the certainty that the next pain-free day will come, too.
The constant anxiety over the next attack is a reliable companion, and the reactions to this first attack (contrary to those upon the first pain-free day) are entirely automatic. The first is followed by the second. They occur in quickening succession and become more intense. One single attack can cause the entire house of cards to collapse.
Now my energy is spent trying to maintain normalcy and react objectively. If I knew exactly when things would go downhill, it'd be easier. Unfortunately I don't, and in all these years I have not been able to develop a sense of it. I only know that it's usually not during an attack. I cannot guess how many there will be this time and how severe it will be. Objectively this means specifically looking over medication reserves and refilling when necessary.
In the meantime I have had a number of good experiences upon ingesting high doses of Verapamil. It does have its negative side-effects, but it appears effective at reducing the number of attacks and alleviating their intensity. It is and remains a feeling because I can never really know how this episode would run its course without preventative medication. In any case, this feeling is very clear.
If it's important to return to normalcy after an episode, I consider it prudent to make a planned departure from this normalcy at the beginning of another one. I avoid taking on tasks and obligations that I may not be able to stick with. I even minimise the number of appointments in my personal life. Complete social withdrawal is not good, and any doctor, therapist, and psychiatrist would confirm this. But this withdrawal is temporary, and in that time I abstain from planned appointments and dates. I don't buy any tickets to a concert a few weeks from now, for example. The entire time I'd be encumbered by the stress brought on by the question of whether I will be feeling good enough that evening. I consider this avoidance necessary. My close social circle has come to understand the process. I don't know if they all understand it, but they accept it without complaint, and I'll come along the next time.
What weigh down on me far more are the times when the pain decides to make a reappearance, especially at those exact moments when I needed it the least. Always at a time when I thought I had regained my stability in life. Be it from a professional perspective or a romantic one with a partner who made me feel safe. Numerous times I have thought that it was as though the cluster was waiting until that precise moment to re-exert its negative influence on my life. That probably sounds paranoid, but it's the impression I've had. Or rather, it's the impression I used to have, because every time I get better at working around it. It will never be nice and simple, but I won't let it have such an impact on me anymore.

Title: Re: Introduction - You can't see what I feel
Post by AussieBrian on Dec 30th, 2018 at 10:25pm
I, too, commonly wondered which was worse - the pain of an attack or the fear of the next one.

Title: Re: Introduction - You can't see what I feel
Post by Mike NZ on Dec 30th, 2018 at 10:54pm

AussieBrian wrote on Dec 30th, 2018 at 10:25pm:
I, too, commonly wondered which was worse - the pain of an attack or the fear of the next one.

Interesting question and no doubt multiple thoughts from different people.

When I'd got a CH, I'd be into my routine to deal with it, normally with oxygen which I kept to hand the majority of the time. I knew I can get through a CH and that O2 works pretty quickly.

But not knowing when the next might happen, which could be any time, any where, that was harder in some ways.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Jan 6th, 2019 at 3:31pm

I have not been successful at finding an answer to all questions, but I have been for far more than I originally expected.

If we are no longer able to change a situation, we are required to change ourselves.
Viktor Emil Frankl

Logistics of a Chronic Illness

Sometimes things happen fast. During a cluster attack, "sometimes" definitively means "always". The reaction speed when taking preventative steps is immensely important. Every minute spent waiting means another minute of having to endure the pain. Anyone who has blacked out from pain is not prepared to discuss, but calculates every second. Smooth logistics in the supply of medication is an absolute necessity.
I receive the prescriptions I need from my specialist and, in an emergency, from my doctor. Prepaid envelopes are covered by my specialist, so I can request prescriptions by phone or e-mail when required.
My pharmacy is open from 8 a.m. to 8 p.m. six days per week, and receives deliveries three times per day.
I receive the oxygen from a local medical store. I can pick it up there, but it is also delivered upon request, and on the weekend there is an emergency service and an oxygen reserve in the basement.
I cannot wait for any of this. Everything must function smoothly. I have sought out my partners and been nice to them so that they will also be nice to me. It's not very hard. A little smile, a Happy Easter and a Merry Christmas will suffice. Then it happens that one is approached by the pharmacy staff: "I knew you were coming today when I saw the Imigran on the order list." Anonymity isn't worth it here.
The most astonishing result of this tactic was when the medical store employee recognised my car when I pulled up to the parking lot. When I entered the shop, she had already brought out the oxygen bottle I had ordered over the phone.
Adjusted reserves in my own home and at any other strategic points also help with an uninterrupted, stress-free supply, of course. Reserves of the reserves can also be kept at work or with (nearby) relatives simply so that one is not suddenly left without a safety blanket.
I personally keep a store of acute medication - Imigran inject, Zomig nasal, and oxygen bottles - at home in quantities that will roughly last for one of my bad weeks. Everybody needs different amounts. This could be two small, 2-litre oxygen bottles or five large, 10-litre ones.
Unlike the common phobias of darkness, spiders, or flying, the fear of being without the medication that saves me is very well-justified. No method of confrontation commonly used in behavioral therapy can help against this anxiety. Much like how a skydiver securely checks their equipment, the cluster headache patient should pay attention to their emergency reserves. It's worth the effort. Those who neglect to do so will only punish themselves in the end.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Jan 15th, 2019 at 3:29pm
Headache Journal

In his classic of motivational literature How to Stop Worrying and Start Living, Dale Carnegie recommends physically writing down problems, fears, worries, and possible solutions. Every doctor suggests that pain patients keep a journal. And all I can say is, follow this advice!
Keeping a journal serves to sort one's thoughts and helps correctly reconstruct sequences of events. A pain journal in particular helps document pain as quantitatively as possible. The intensity of pain cannot be measured in the same way a kilo of flour is. A properly maintained headache journal, however, gives the patient, their attending physician, and any advisors an objective overview of the sequence of pain.
You will certainly stop keeping track of whether you have been torn out of your sleep by the pain three times per night for two or three months. Such a trend can only give you the hope you urgently need, or indicate the remaining effectiveness of a medication - an effectiveness that may otherwise not enter into your consciousness at all, thereby becoming a wasted opportunity. That would be fatal.
You do not feel noticeably better when you only have two attacks at night instead of three. You also don't feel better when it's just one. You only become consciously aware of something once you have been able to sleep through three nights once more. At the very least, I also find the interim objectives worthwhile.
In my headache journal it was the Zomig nasal that had a positive effect. After the first dozen uses I was able to notice that, in most cases, I had a break period of at least twelve hours after each use. One time it only lasted for eleven, and in another instance the Zomig nasal sadly didn't have any effect at all. But it gave me ten half-days of freedom from pain.
It sounds long enough for someone to be able to become consciously aware of it. But I couldn't. I did not perceive this actually significant improvement as such. Thankfully the more frequent and longer breaks from the pain still ended up in my headache journal.
This resulted in a very simple change to my behaviour. When I had taken Zomig, I felt far more secure. In the hours following I had room for all sorts of activities, from daily errands like shopping at the supermarket, to a mindful walk or a ride on my bicycle - I could leave the house whenever I wanted, keep up with social contacts, move around, and exercise.
Even though it can't be proven empirically, I am very sure that this simple state of affairs that palpably accelerated further recovery or the continued abatement of the episode.
This is why I believe that keeping a headache journal is an elementary and extremely crucial part of dealing with cluster headache. One of the main reasons being that it doesn't cost a thing and is free of side-effects. Those who say it is too much trouble keeping a headache journal are either irredeemably ignorant or their pains are simply not severe enough. That's all there is to say about the matter that a journal should be kept. The second step puts forth the question of how.
Sadly, none of the pain journals I know are suitable for cluster headache patients. The problem here, as with other trigeminal autonomic cephalalgias, lies in the relatively short - and all the more frequent - pain intervals. The pain scenario must thus not be recorded by the day, as it is actually more sensible to scale it by hours. What I recommend, and what I do, is documenting the beginning of the attack, its duration, its intensity (pain severity on a scale of 0 to 10), and the medication used.
How the respective sufferer actually does it will also depend on their personal preferences. Some go for the classic pen and paper. I prefer to do it electronically, and I keep a headache journal in the form of a table in a spreadsheet. Each sheet corresponds to one week. With the current layout, six pain events can be recorded per day. A field is also open for any freely formulated comments. The advantage of this layout for me is that trends become clear simply by flipping through the sheets. More attacks mean more entries, and - at least in my case - more extensive comments.
I have also expanded my electronic headache journal with a visual pain severity analysis. The duration of the respective attack is multiplied by the intensity of the pain, and then the individual results are added up. The results may be shown by day or by week, and in my experience they very clearly show the wave-like sequence of a cluster episode.
An online headache journal and a headache journal app would also be in line with the times. But before anyone can even say the words "privacy policy", I would like to push the topic a bit further into the future. I am not currently aware of any proper solution, and it would not be of any additional benefit to the sufferer. Anyone with a pen and paper can continue to use it for many years to come. Those with a PC or Mac at home can integrate my headache journal template into a spreadsheet.
My template can be found online at:
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Title: Re: Introduction - You can't see what I feel
Post by Rafael on Jan 16th, 2019 at 3:30pm
Severe Disability

The term "cluster headache" entered into my life one night in December 2004 as I was searching online for the phrases "headache" and "inability to work". Over the years I have since continued to learn how to deal with my disease, but there are still too many periods when I am not able to work. So does that make me disabled, or not?
Disability is defined as a long-term and serious impairment of a person to participate and/or get involved in society and the workplace. I believe I have very clearly met this criterion. But in Germany, one is only officially disabled when they own a disabled person's pass with a disability level (DL) of 50 or more.
Anyone hoping to obtain a disabled person's pass must apply at the regional pension office or the office for social affairs. First the right office has to be found, which depends on the applicant's town and state. Upon entering a town and the key phrase "pension office", the internet will spit out the right place. Those living in the country may have to enter the name of the nearest city.
The respective office provides the application as a pre-printed form (also often available online). The official name of this form is "First-Time Application as per § 69 of the Ninth Volume of the Social Code (SGB IX) to Determine a Disability and to Issue a Pass". The office then examines it and ascertains the level of disability. To this end, the applicant must provide the office with any available medical records. If an applicant lost their eyesight or both legs as a result of an accident, then a very clear determination is likely. But if they have rarely been to the doctor and were never on sick leave, then the process will probably result in rejection.
My first application was also rejected. Now it's possible to appeal that decision, resulting in a reassessment. Applicants can now expect to be invited to see the medical officer or independent medical examiner. After my appeal, I was assigned a DL of 40. Experience shows that a first-time application for a disease that cannot be classified by high-tech medicine, like cluster headache, is very often rejected and filing for an appeal is the norm.
I had decided to accept my assigned DL of 40, and to file a change request after the next pain episode. This application was also rejected, so then I had to submit an appeal once more. In practice, such an appeal is no more than a comprehensive letter in which I disclosed my situation. This time my appeal, too, was turned down. The next step is filing a complaint at the local social welfare court. It sounds dramatic, but this is also merely an extensive letter that must, of course, be formulated correctly. The case is ten reexamined by another office. In my case, acknowledgment of a DL of 80 was recommended a few weeks after I filed my complaint. With no court proceedings. I agreed to it and was able to receive my disabled person's pass a few days later.
The pass serves as proof of the acceptance of rights and disadvantage benefits legally afforded to people with a disability. This includes special protection against termination of employment, a claim to additional leave, and income tax benefits. Based on my experience, a disabled person's pass is first issued only for a certain amount of time.
Essentially, the most detailed documentation of the disease possible is helpful. I assume that my headache journals and the fact that I am a patient of the distinguished headache specialist Dr. Astrid Gendolla certainly didn't hurt the granting of my disabled person's pass.
If the first round doesn't work, you cannot despair and should firmly take the next step. A little endurance never hurts. In my case, however, when all was said and done I had only filled out two applications and three lengthy letters, two appeals, and one complaint.

But does it also make sense to embarrass yourself with this pass? To officially brand yourself as disabled? I know of other people who have a fundamental problem with accepting themselves as such. I didn't have this issue. It had been clear to me for years that I was no longer fully capable, and thus not indefinitely employable. It was obvious that my professional future would require all my cards on the table, and this includes the official designation as disabled. But everyone must weigh the pros and cons for themselves.
In retrospect, I'm also happy I took this step. The official disability status makes it easier to discuss the severity of the disease sometimes. The pass shows that it's not just the same kind of headaches that everyone else gets. The disabled person's pass is not issued indiscriminately, and so even possessing one carries a certain validation, and saves any unnecessary explanations.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Jan 26th, 2019 at 9:08am
I'm Getting by, Right?

Perhaps I should say I've learned to compose myself. I am certainly leading an alternative version of my life. Plan B or C. But is it right to denigrate that?
Allow me to use a radical example: someone in a wheelchair cannot play football or ride their bike or go skiing. That's clear to everyone, including the wheelchair-bound person themselves. They can use clear criteria to determine whether that life is still worth living for them. Some have the unwavering optimism and joie de vivre of a Florian Sitzmann (disabled athlete and author), and others are shattered by their fate. Others break down even though there has been no fate for them to face. These examples illustrate that it's not about the situation, but the value that it presents to us.
The awareness of this rather simple fact has made a long-lasting impression on my life. I am no saint (just an angel, but that's another story). I am also not always able to pass through my life with a positive attitude. There are days - many days, even - when I don't feel well because I'm in constant pain and I have not been able to enjoy one restful night in weeks. And in that position it is easy, very easy, to keep whining. Whining that I'm alone, that I don't have a (well-paying) job, that I have it worse than everyone else, and so on, and so on, and so on.
But the only person I'm upsetting is myself. And very little will improve because of my complaining. I may inspire pity among people I know, and that is the last thing that I want. "Poor little thing." No - please, not that!
I may not always be able to whistle a happy little tune, but trying to whenever possible makes my life palpably better. If I had a patented recipe for how that works, I would give it away in an instant. But I can list the autosuggestive methods I regularly follow to improve my mood.
First, an experiment in the other direction. We need an open space of about five metres. Stand there, more slouched than upright. Let your head and shoulders hang. Drag your feet and shuffle and slide right across the room. How do you feel? Before turning back, straighten yourself up, hold your head high and your neck elongated. Now bounce with your knees and walk back. Was the return trip better?
There are countless motivational books and guides to happiness that contain hundreds of suggestions like that. Anyone who's inclined to do so could chant incantations into the mirror and feel better. The method isn't important in the end, as long as it works. No holds barred, although psychoactive substances are not allowed.
Those with a penchant for sarcasm, like myself, will have motivational literature in their bookshelf next to books like How to Ruin My Life - By Following a System by Rainer Sachse.
Despite all motivational training, there are still unresolved issues. And - snap! - there's that merciless optimism again. Because "still unresolved" means that the issues can be solved. Even more, it shows that there is something to look forward to. The most important of the unanswered questions is ultimately only pecuniary in nature. Will I ever find a job and an employer compatible with cluster? And will the cluster allow me to pursue regular work? Will the open spaces I frequently need ever be provided to me? What will I do if that doesn't happen? A life of basic security is not an alluring prospect, although I'm happy to live in a country that offers suitable social backup.
What if I didn't live in a Western, industrial nation, but rather in the Australian Outback or the coast of Greenland, or in the depths of the Congo? Would I be dead already, or not sick at all? I may try it out someday. Right now, I'm still too cowardly.
What if I had been more industrious and adept at saving in my younger years so that I could now go into retirement with acceptable earnings? Would I be happier? Yes, I would be. Richard David Precht says that money generally increases the number of opportunities to develop. And more important to me than development is security. Had I known sooner what is going on, I would definitely have become a civil servant. If the dog hadn't shat, it wouldn't have caught the hare. It is what it is, and the best will be made of it.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Mar 4th, 2019 at 11:39am
Enjoy Life

My life has included long periods with very few positive thoughts, and with love only as a painful memory. I had forgotten that I alone am responsible for how I feel. Nobody else.
What does self-responsibility mean?
Each of us must always decide whether to act or not, whether to continue indulging a habit or not. This responsibility is not something we can avoid or postpone. If we abstain from consciously facing these things and their consequences, all we are doing is limiting our number of opportunities. By ignoring our opportunities, we are unconsciously making a decision. And doing nothing can be the most fateful decision of all.
My solution: get out of the box! Or even better, get rid of it!
One hundred years ago Sybil F. Partridge came out with Just for Today, ten prompts to help one take small steps to get out of their shell. I would like to briefly describe the three best:
•      Just for today, I will take care of my Body. I will exercise it, care for it, and nourish it, and not abuse it nor neglect it; so that it will be a perfect machine for my will.
•      Just for Today, I will be agreeable. I will look as well as I can, dress as becomingly as possible, talk low, act courteously, be liberal with flattery, criticize not one bit nor find fault with anything, and not try to regulate nor improve anybody.
•      Just for today, I will try to live through this day only, and not tackle my whole life-problem at once.
I cannot promise anybody that this will help. But it is certain that tomorrow need not be like yesterday. And that it is worth not sticking your head in the sand.
Even if it rains today, the sun can shine again tomorrow. Only very few people will refute that. So why do we often go about our lives with so little optimism? We only have one life, and we should care for and cherish it.
If it's raining cats and dogs for a week, the hope for a sunny day may dissipate somewhat, but nobody will seriously believe that the sun has disappeared forever. If it's really coming down like buckets so that rivers breach and harvests are destroyed, then it's understandable to be furious at the ineffable weather. And yet even then, nobody will think that the sun is gone, even though it's long been hidden behind a thick blanket of clouds.
There comes a day when it makes a reappearance and its warm rays reach us again. This doesn't necessarily mean that everything is simply over and we can carry on like before. Depending on the extent of the storm and the scope of the damage, comprehensive (clean-up) work may be required.
Not much is different in our lives. Some may be born with a silver spoon in their mouth and will never have to trudge through the darkness. Many of us have to deal with adversity from time to time. Unlike the sun, which we always believe in deep down, it happens that we lose faith in ourselves. But for as long as we are here, there is a new tomorrow every day. And every new day does not have to be like the last one. Even a hundred failed attempts do not mean that the next will not work out. Doing nothing, stagnating, is ultimately its own decision, perhaps not a conscious one but definitely the worst.
If I am looking for a job and have been rejected for months or even years, it's definitely frustrating and gruelling. But if I take from it that there is no meaning to anything and stop writing applications altogether, then once again it is me who is taking the opportunity away.
Of course it's difficult to find the motivation to keep going. It's hard to consider why previous strategies have not been successful and what could be done differently, and hopefully better. One plan for this may be to find a way to benefit from the lack of prospects. If I think my application probably won't be successful, I can bet on the risk and simply try using unconventional methods - stick out from the group of other applicants by being noticeable. This is not an endorsement for boorishness, but rather creativity. However, it is worth ensuring that faulty endeavours are not repeated. If I have not received any acceptances or rejections of applications for months, another form is necessary.
If my doctor cannot help any further because they lack the required specialisation, then it's necessary to find a specialist. Unfortunately, doctors are hard-pressed to admit that they don't know anything else and their treatment is nothing more than stabs in the dark. This is the cue to use your own self-responsibility to make the necessary changes. Others will hardly ever do this for us, and are also not able.
It took me five years to find a doctor to diagnose my cluster headache syndrome. Even worse! I was able to diagnose myself with it at some point. This in turn allowed me to find a specialist who confirmed my self-diagnosis. In that time I have avoided all medical professionals a number of times and declared them incapable. Not one of them was able to help. I did not stumble across the right doctor on my own, of course. It was bad luck, plain and simple. Now I know from other sufferers that some of them had the same experience. Others were more fortunate. They found the right doctor who knew the disease.
Had I kept my head in the sand back then, I may still not have received a diagnosis, let alone any medication and helpful treatments. The mere thought sends chills down my spine.

A good seven years have passed since the diagnosis, and in that time I have adapted to new medications, or new medications came onto the market and needed test subjects. Seven years in which I have worked against the systems with general management strategies, sometimes with more luck and others with less. Now I spend my seeming half-life as a chronically ill person. It includes concrete outage periods caused by pain, but also maintenance of the logistics. Regular guests at doctors' offices, pharmacies, and medical stores will do themselves a favour by becoming well-known there.
Of course, none of that is nice and it's not fun, but it's necessary to keep the other half of my life exactly that: a life. That is far more than I expected, and it's ultimately worth the effort. Admittedly, it takes a while to be able to internally accept the time used on it, but the impressive logic doesn't change. I have to invest half my life in managing a disease merely so that I can keep the other half for myself.
That's not very compatible with today's society of performance, but nevertheless there is a "tomorrow" that I did not believe in "yesterday". Even if I didn't know where life was heading or why, I did not give up, and now I can say that it has been worthwhile. Those who do nothing will receive nothing in return. Those who wait for something to pass can wait a very, very long time.
And nobody has to be embarrassed if they aren't immediately able to implement these strategies. For me, the process has taken twelve years, and it's not complete. For one, I have to continuously motivate myself, and I'm not able to do that every day. Plus there is always something new to learn. Nothing is perfect and everything can be improved. But only someone who makes mistakes can become better.
When I write that I invest half my life in managing a disease, I would like to specify one certain aspect of that. Because this management also entails intensive work on the part of me that is not sick at all, and which wants to be empowered.
There are diseases that are just there and cannot be conjured away. In this regard, it only makes sense to put a lot of energy into what remains in order to make it possible for the sufferer to tackle their personal issues.
To be more specific, yoga is not the silver bullet against actual pain. But it really gives me an entirely new way to address it. This in turn helps immensely. If I may get to the point, it hurts as much as ever, but I can cope with it better. It's not a cure-all by any means, as there can be no such thing. However, I am now firmly convinced that it's worth it to find your own solution.

Do more of what makes you happy!

Title: Velosophy
Post by Rafael on Mar 10th, 2019 at 4:55am

The wheel is, without a doubt, one of the greatest of mankind's inventions. It may even be the greatest. On top of that, may I add, it has never had any negative side-effects.
A simple bicycle can be so much more. It allows for relatively broad mobility with few resources. It provides the rider with a connection to their surroundings without overwhelming the senses. And it lets the rider participate in a highly technological world with very primitive means. It rolls swiftly through urban areas without the congestion assistance of navigational devices. And it always finds a parking spot in the immediate vicinity of the destination without a parking assistant or reverse camera.
All one has to do is breathe and pedal.
Here I would like to digress a little and mention two types of behaviour that, in my own experience, are difficult for many other people to accept.

One: using a bike every day.
Two: rolling one's own cigarettes.

When smokers stand together, a self-roller is almost always patronisingly offered a filtered cigarette. It seems to me that the smoker of filtered cigarettes wants to indulge the poor self-roller a bit. But they, in turn, don't want something ready-made, with or without a filter. They understand the rolling of cigarettes as a preparatory ritual and want to keep it that way. Other countries, other customs? To call this phenomenon typically German may be a step too far, but I would bet that this phenomenon does not exist in the Netherlands, where the rolling population is much higher.
Riding a bike is similar. If a cyclist comes upon a birthday party, somebody will almost certainly offer to drive them home later. Riders of racing cycles may avoid judgment, but regular cyclists are suspicious, especially those who ride a bike with a basket to the grocery store. "With a bike? No driving licence?" Words like those are always floating around the room. I will explain here once and for all that no, none of it has anything to do with some sort of ordeal or a lost driving licence, but rather it has everything to do with quality of living. I would prefer not to sit in a tin box more often than I have to.
Other countries, other customs? In the Netherlands, the bicycle is socially accepted. And I am beginning to understand why I have always felt so comfortable among our neighbours.
Alex Rühle once phrased it like so in a blog article about cycling in winter for the newspaper Süddeutsche Zeitung:
"The few times when I have taken the bus or streetcar to work in the wintertime, I later felt as though I had spent the night in an old sock drawer. The stagnant air, the chipped windows, the endlessly bleak aisle, and most people on the streetcar look so crumpled up, as though they had been presented with a certificate of discharge from existence before boarding. Smile a little, people! Sing a song! But no, they jerk and jolt their way to their destination in silence."
And he is absolutely right when he writes, "Pedal, breathe, look, relax, contemplate. Nowhere do things seem better than they do on a bike."
This leads from the general revelation as to why cycling is both economically and ecologically sensible to the fact cycling personally helps me as a cluster headache patient.
Put quite simply, sitting on a bike means moving. Out in the open air. In essence, it's the fundamental programme behind every psychotherapeutic measure. Light and motion always have a positive effect on us, and have no harmful side-effects.

Furthermore, the bicycle helps reduce irritants for me. In times when I have not been able to sleep enough for weeks because of constant nightly attacks, the entire world seemed to pass by me too quickly. During times like these I am extremely averse to driving cars, as I am not really able to take in all of the information around me. With my bike, I can travel longer distances than my feet will carry me. I am thus able to move as much as my momentary sensory capacities allow. With my bike, I can ride as slowly as I like without provoking a choir of horns in my wake. And if traffic is too hectic for me to cross the street, there's no harm in riding up to a pedestrian crosswalk and crossing during the next green light.
This may sound a little like kindergarten. But when you're alone and it looks like you're seeing the world around you through a big cotton ball, then the bicycle guarantees mobility. The bike is as necessary as a wheelchair for a paraplegic, or an assistance dog for the blind.
Pedaling, breathing, and relaxing are also easiest when I'm on a bike. Just like pedaling, breathing, and contemplating. A great number of ideas and insight have come to me on my bike. I have to rely on oxygen. Pedal, breathe, and enjoy. For me it's simply the full wellness package.
In my own experience, a better condition helps with overcoming the next episode. Not just the condition either, but also ensuring phases of respite and working with limitations. A quick ride to the bakery isn't enough. But the Ruhr Region has more than enough hills to break a sweat. Anyone who has trained enough here will not find any alpine terrain further south in Wuppertal or Hagen, but rather many other challenges.
The process of cresting a slope is similar to a headache attack. I find it very helpful to train for this process over and over, and especially to be certain that, just as every mountain has a summit, every attack has an end.
On her "Lovely Bicycle!" blog, writer Velouria published a wonderful text on these thoughts that shoot through a cyclist's head while scaling a mountain. These thoughts have a lot in common with how one should deal with a disease - even if one loses their breath halfway through!

Her text can be found on the "Lovely Bicycle!" blog:
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Title: Re: Introduction - You can't see what I feel
Post by AussieBrian on Mar 10th, 2019 at 5:36am
Rafael,  your writing continues to enthral me. 

I reckon it's time to amalgamate the whole lot into a single thread of your own,  perhaps in the General Posts section,  so it all reads consecutively like a book.

It could well serve to help so many others who must live this nightmare but aren't quite able to put it into words.

Please keep up the good work,

Brian down under.

Title: Re: Introduction - You can't see what I feel
Post by Mike NZ on Mar 11th, 2019 at 12:12am
Another reader of your posts, just like Brian.

AussieBrian wrote on Mar 10th, 2019 at 5:36am:
I reckon it's time to amalgamate the whole lot into a single thread of your own,  perhaps in the General Posts section,  so it all reads consecutively like a book.

If you do so, could you put a blank line between your paragraphs as this will make it easier to read.

Title: Re: Introduction - You can't see what I feel
Post by Rafael on Mar 16th, 2019 at 7:35pm
It is already availible as a book. Paperback or kindle. As you like.
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Title: Outlooks
Post by Rafael on Mar 16th, 2019 at 7:36pm

What are the current prospects for new medication and treatments? The short answer, unfortunately, is: "Nothing specific." To be prosaic, there are too few of us. The number of patients is too small for the pharma industry to take particular interest in cluster headache sufferers. The available medication is either also approved to treat cluster headache or is used off-label. There is no medication designed specifically to treat cluster headache. All triptans are primarily conceived to treat migraine. Thankfully, someone noticed that they also have an effect on cluster headache. Nevertheless the usage of Imigran and others is a by-product.
Yet there is a relatively specific assumption of the way it works. For preventative medication, like Verapamil, such estimations are stabs in the dark. Only observation is possible. Of course, I also like to take a medication that I know to be helpful, even if nobody knows how exactly it works. Still, the discovery of new medication is left entirely to chance.
The effectiveness of new medication must be verified in clinical trials. Their harmlessness and the risk-benefit ratio must also be determined. Generally the trial in question is a phase III study in order to verify the effectiveness of a therapeutic measure (like a medicine, for example). And this is only the last step of medicine approval. These procedures are very comprehensive, and thus costly. Because the pharmaceutical corporations are companies that want and need to make money, the targeted development of new or better medication to counter cluster headache is not exactly high on their list of priorities. And if they want to develop a medication, it would be very helpful if the working mechanism of cluster headache was known. But it is not. There is research being done in this area, but not nearly with the same intensity dedicated to other diseases.
In my experience, new and better medications are not impossible, but at least unlikely. Waiting or hoping for them doesn't seem like something I can recommend. Anyone who goes through life with their eyes and ears open will always hear about research and new insight into diseases like dementia or Parkinson's, and there are indeed studies about cluster headache. Yet they are more for taking stock, and are miles away from presenting new solution-based approaches. Because there have been no new approaches to treating the much more intensively researched dementia-related diseases, I will be so bold as to deduce that, for the time being, any progress in the treatment of cluster headache can only be expected as a result of chance.
There are attempts to overcome the pain attacks via so-called deep brain stimulation. This entails the surgical implantation of electrodes in the brain that aim to correct disease-induced errors. This method is primarily used in the treatment of Parkinson's. The clinical trial also tests this method against cluster headache, epilepsy, depression, and Tourette's syndrome. it is very certainly a personalised attempt at treatment that can be discussed as a last resort for patients who are not responding to any other treatments. In some cases, epilepsy patients even have the opportunity to undergo neurosurgery to remove parts of the brain. It is a very risky operation, but it has been proven to prevent attacks.
Similar success with deep brain stimulation (DBS) to treat cluster headache is currently a topic of debate. This also applies to other experimental surgical procedures like spinal cord stimulation (SCS), pterygopalatine ganglion stimulation (PPG-S/PPG-I/PPG radio frequency stimulation), and occipital nerve stimulation (ONS). All of these ultimately aim to have a positive influence on the patient's pain via the electrical stimulation of various nerves.
Transcutaneous vagus nerve stimulation (tVNS), which does not involve surgery but also works with electrical stimuli, is gentler.
In my personal opinion it is more a desperate stab in the dark than targeted treatment. It is called "experimental treatment" because that is exactly what it is. For me, such a thing is out of the question even given all of the pressure exerted by recurring pain. But I am also not resistant to treatment.
Another stimulation method, namely that of the sphenopalatine ganglion (SPG), seems a little better. I think it's really nice that this approach is not a secondary or tertiary assessment of a method. SPG came about as an idea from a research group at an American university. A spin-off company established as a result now sells the stimulators. The idea is based on the assumption that this sphenopalatine ganglion also plays a central role in the perception and transmission of pain as a nerve fibre. Stimulation strives to impede this role, thereby improving the pain situation. There is a certain sense to this logic in my eyes, and the operation is not as drastic as that required for deep brain stimulation. Initial studies inspire hope. However, it is still too early to be able to form a conclusive opinion.

Title: Hard Drive Receiver
Post by Rafael on Mar 17th, 2019 at 1:44pm
Hard Drive Receiver

There are practical, everyday things that make life with cluster headache more bearable. This includes a hard drive receiver or some other form of reception for the television. The importance of this cannot be underestimated. If every time you watch a movie you miss the middle, the ending, or even the entire broadcast, then over time it becomes much more frustrating than you would think at first. Since I have a hard drive receiver, I can at least counteract the everyday disruptive effect of cluster with the click of a button. My kingdom for the time-shift function.
During one summer episode, almost all of my attacks struck inexplicably during the mountain stages of the Tour de France. While the final ascent was being broadcast live, I couldn't even see for all the pain, but thanks to this little button on the remote control I could watch it all again once the attack subsided. For me, that's a little quality of life I have regained thanks to technology.

(Ok, this is a little bit obsolete since we are using more and more streaming media like netflix. This goes something around 10 years back in time. Before 2005 there was no youtube.)

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