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Introduction - You can't see what I feel (Read 3549 times)
Rafael
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Re: Introduction - You can't see what I feel
Reply #25 - Dec 15th, 2018 at 3:55pm
 
Turmoil

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.
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Rafael
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Re: Introduction - You can't see what I feel
Reply #26 - Dec 16th, 2018 at 4:06pm
 
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.
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Skyhawk5
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Re: Introduction - You can't see what I feel
Reply #27 - 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.
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Rafael
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Re: Introduction - You can't see what I feel
Reply #28 - 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.
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Rafael
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Re: Introduction - You can't see what I feel
Reply #29 - Dec 30th, 2018 at 1:26pm
 
Over?

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.
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AussieBrian
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Re: Introduction - You can't see what I feel
Reply #30 - 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.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Mike NZ
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Re: Introduction - You can't see what I feel
Reply #31 - 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.
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Rafael
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Re: Introduction - You can't see what I feel
Reply #32 - Jan 6th, 2019 at 3:31pm
 
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.
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Rafael
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Re: Introduction - You can't see what I feel
Reply #33 - 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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Rafael
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Re: Introduction - You can't see what I feel
Reply #34 - 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.
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Rafael
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Re: Introduction - You can't see what I feel
Reply #35 - 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.
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Re: Introduction - You can't see what I feel
Reply #36 - 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!
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Velosophy
Reply #37 - Mar 10th, 2019 at 4:55am
 
Velosophy

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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AussieBrian
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Re: Introduction - You can't see what I feel
Reply #38 - 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.






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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Mike NZ
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Re: Introduction - You can't see what I feel
Reply #39 - 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.
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Re: Introduction - You can't see what I feel
Reply #40 - Mar 16th, 2019 at 7:35pm
 
It is already availible as a book. Paperback or kindle. As you like.
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Outlooks
Reply #41 - Mar 16th, 2019 at 7:36pm
 
Outlooks

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.
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Hard Drive Receiver
Reply #42 - 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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