Brad, your openness will open some doors for you are not alone. Coping with Cluster is often more troublesome than treatin the actual condition. A couple of suggestions.

Remind yourself that people don't uderstand us BUT usually are sincere in offering some advice/support, etc. That it doesn't help us doesn't negate their motives.

Avoid any effort to explain, etc. A gentle, "Thanks for your concern. I'm getting good medical care", is a signal that you don't want to talk about it. This will help you by avoiding trying to explain, etc. A way for you to control and disengage.

It will take some work but this approach has excellent support for effectiveness. You might consider seeking a counselor who uses "cognitive" forms of counseling and/or get some of the reading material (at bottom of the following.) Takes some commitment and practice but an effective way to alter how we think, and so react, to the whole situation.
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PAIN VS. SUFFERING

Please, reader, do not approach this little essay as an alternative treatment or cure for CH! Nothing outlined here is a substitute for good, sound medical care and treatment.

AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.

Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.

Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks.

The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN!  This is the paradox which we need to resolve if CH is not to be the controlling experience in life.

As you read our messages about CH they fall into two broad categories: causes, prevention, and treatment; and, the subjective experience or emotional side of CH. 

A sample of the "experience" messages which we see are along the lines such as:

"Ch is horrible; it never stops!" (Or it will never end; or they will go on all my life, etc.)
"I can't bear the pain!"

" Nothing makes me feel better!" (Or no medication works; all have failed and so on.)

"It's not FAIR!" (Or variations along the lines of, "why is God doing this?", "am I being punished?")

"I feel so GUILTY!" --because of how I burden my family or can't work, etc.

"The WORST thing in my life!" (Or some variation on how CH is a catastrophe that I can't handle.)

(Before moving on, you may recognize this concept as the core of cognitive therapy or Rational Emotive Therapy. These therapies are rooted in the basic idea that how we think about an experience creates corresponding emotional reactions--for good or bad. The research on the effectiveness of this approach is very good; outcome research shows that it is an effective form of therapy for depression, anxiety, and addictions of various types.)

Cognitive therapies teach people to recognize:

A. These thoughts may be spontaneous and automatic but,
B. They are not rational thoughts, and so, in their very lack of reason they,
C. Stimulate emotions which are disruptive, distorting, and which intensify the difficult experience of CH and,
D. This style of non-rational thinking and the associated emotions tend to spill out (generalize) into our larger lives affecting relationships, our beliefs in how effective we are, how well we are able to run our own lives, and so on.

IF (and this is often difficult to both see and to accept!) we can begin to see HOW our thinking may not be fully rational and HOW these ways of thinking feed our SUFFERING--then it may be possible to change our thinking habits.

The next step--past a willingness to consider that we may be thinking  this way--is to learn how to dispute with ourselves, that is, how to argue that our own thinking is not reasonable, that it is self-harming. Then we learn how to change these thinking habits (with the goal in mind that by changing how I think about my experience will change how I feel, how my emotions affect me.)

(Understand that this is an outline of a fairly involved process. I'm just trying to quickly summarize how this method of self-help works. Sources of material are at then end.) So, let's go back to the sampling of expressions which we see in our messages about CH and see how cognitive psychology would deal with them.

1. "CH is horrible; it never stops!" First, recognize the despair and hopelessness which arises from this statement: where will this line of thinking take me? So, we learn to respond more rationally, i.e., "Yes, it's hard pain--but it has always stopped even when I don't treat it. I can survive this attack as I have every other one. I need to do what I know helps."  The long term effective of this change in thinking is to increase self-confidence and a sense capacity to benefit ourselves.

2. "I can't bear the pain!" Response: "I always have. I know pretty much what to expect; I've got some medication which helps. I can bear the pain because I always have!"  Notice, this is not a denial of the pain; it's not a "let's pretend". The goal is to deal with the reality of temporary pain; pain which, as bad as it is, has always stopped with our return to reasonable well being. It is the denial of this, our personal experience, which arouses suffering and despair.

3. "It's not FAIR!", or thoughts of GUILT, or that I'm being PUNISHED. Response:  "This is my body not working right; it has nothing to do with morality or sin or fairness. My job is to care for ME, NOW, not fret about fairness." (The consequence of  an appeal to "fairness" is that we become victims. The problem with "guilt" is that we have to find a "sin" which justifies having CH or we must convince ourselves that we have chosen CH to avoid something or to hurt someone, hence, our sin. In the end, this line of thinking is not reasonable or rational and serves to create more suffering.)

4. "CH is the WORST thing in my life!" I often see folks express in their messages a sense of anticipation, of feared expectation about the next attack of cycle. There are few responses which lend themselves to the development of suffering better than this one: waiting for pain; looking for the next sign; assuming that it will come. Reflect a moment on what the impact is on our emotional well being and you may begin to appreciate why changing thinking habits is of value.  How to respond?  "It is the worst experience--when it's occurring--then it's over and I return to my full life. My whole experience says that I'll come through the next  one--when and if it comes. I don't have to wait and look for it; there is living to be done, now."

If you are interested in exploring this way of altering your thinking habits there are three readily available sources of information:

1. Go to Amazon.Com and put "rational emotive therapy" in the book search box.

2. Go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and get the catalog. (This is the homebase for Dr. Albert Ellis, the founder of Rational Emotive Behavior Therapy.)

3. Look for a paperback, FEELING GOOD: THE NEW MOOD THERAPY, David Burns, M.D. While this title is written around the issue of depression, the general framework can be applied to coping with cluster headache.
  This is true for many of the titles you will find at #2; REBT and  Dr. Burns' cognitive restructuring approaches have been used for a wide variety of problems--the general framework is fairly universal, in this sense.

BobG wrote on Mar 25^th, 2014 at 9:13am:

Thank you for that, I had all 3 in my lap tonight in the bed and explained it to them. I gave my twins the job of getting me and ice pack and my 7 year old the job of turning the lights off, TV off, and shutting my door. Without asking he took his sisters in his room to play with his cars.
When the demon passed I went in to thank them and they just hugged me and told me they loved me and wanted to help daddy feel better. It was awesome, thank you so much for that. As you know it gets hard to think during the cycles.
I am trying to think positive and as my mom tells my dad who also gets CHs we have to celebrate the small victories like going 24hrs CH free or even 12hrs.
I love this site, it is nice to have people who really understand to talk to. Very uplifting during a CH cycle.
Again thank you!

-Brad

Your definitely not alone here Brad. 

I'm 34 and also have a young daughter that doesn't completely understand. 

I try to just take it as stated,  one hour, 12 hours, one day at a time. 

Stay strong my friend,

Eric

your friends doctor?  That's not a doctor nor a human being. That's a quack, busy-body and an not a very nice person.

Bob and Mike, I agree with you both. I guess doctors do have a duty to report it if they think a child is neglected or abused etc, but this one was being over zealous. When he said she wasn't fit he meant physically, not emotionally or mentally, but she's an emotional wreck now. As if she doesn't have enought to cope with. She goes to the headache centre in London and only has to see her GP to get prescriptions.

My friend has up to 8 HA's a day but she goes to work, her home is spotless, every spare minute devoted to the little girl who is clean, polite, healthy and happy, and never misses a day at school. But the doctor suggested that while her mother is "out of action" - in pain, hooked up to 02 etc, then she can't be watching the child properly and anything could happen. I suppose that could be true, but this is one very sensible little girl. And she has my phone number. I'm only 15 minutes away and I've offered to help whenever I can, day or night. I'll move in and sleep on the floor if I have to.