Self-Harm

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.

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.

I, too, commonly wondered which was worse - the pain of an attack or the fear of the next one.

Answers

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.

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.

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!

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.

It is already availible as a book. Paperback or kindle. As you like.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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.)