You can't see what I feel

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Taken from my book "You can't see what I feel" - https://www.amazon.com/dp/B0759Z2TVX

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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:
Photosensitivity
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.
Mobility

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.