I've never seen any formal research on the question but there is some general agreement that Clusters often taper off around 60+. I'm 76 and haven't had an attack for about 6-years and only one in the five years before that.

About the worst thing you can do NOW is to try and forecast the future with the endless "what if" questions. You know now how this keeps your distress level high.

Two steps you can take now: be working with a good doc who knows how to treat Cluster (and too many docs lack both the training and skill in this complex area of medicine). Without an effective treatment & preventive plan in action, the stress level stays high.

Second, explore: 
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.
====
Deepening your toolbag on formal treatment and self-care will help reduce the vulnerability which it biting so hard right now.

If you have an e-reader, this book with worth every penny:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Look for box on book on treating headache. Author is one of the best headache docs in the U.S.

helplesswife - living with the beast is sometimes hard, but it certainly is possible. Most people in these forums aren't miserable IMHO. I think most people DO find good solutions eventually, and your husband is lucky to have a supportive wife like yourself.

I suffer from CH since I was 11, and I can tell you much have change in the past 30 years. And it should probably be 10-15 years at the most until genetic research will supply us with medicine that will make CH a minor disorder, easy to handle.

well with the way clusters bounce your blood pressure and pulse all over the place from high to low and some of the meds do the same thing you wonder how it dont take the life of us 40-50 year olds,heck i am sitting here resting with BP 148/105 and Pulse rate at 112,BP was 120/80 and pulse rate 80-82 all the time before my cycle started in september and not sure if its the predisone they have given me  as i am off it now or the verapamil or sumatriptan pills,but it is getting old thinking you might have a heart attck while waiting for your cyle to end

I'm 65 years old. My clusters started at about age 27. I had 2 clusters each year, each for about 3 months. At age 51 I had my worst cluster ever. Then no attacks until age 58. Right now I'm in my longest, yet mildest, cluster. It's been going on since last November but is under pretty good control with verapamil.

I'm 72 and still getting hit, but not as bad as in the past.

He finally went to get o2.  He was hesitating because he didn't want to accept that he couldn't get rid of them for good with some kind of treatment and the thought of just controlling the pain was not good enough for him.  This cycle started mild enough, but the last week or so has been unbearable to watch.  Not wanting to take the drugs they prescribe, we looked for other alternatives, thought we found one, seemed to work, then boom.  They're stronger than ever and last really long.  He couldn't close his eyes, because just resting seemed to bring them on, so he decided to get the o2 today.  Took the advice here and asked for the non rebreather mask and 15 lpm flow and now he's looking forward to getting a good night's sleep tonight.  It doesn't change the fact that he's basically stuck close to home in case one strikes, but at least there's ready relief.  There's just something about watching your husband, a big strong man, crumble like a helpless little child...very hard to watch knowing there's nothing you can do.  At least now, he's properly set up with 02 and taking the vitamin regimen.

Thanks.  Seems like it's pretty bad this time around (kind of an understatement, I know).  It's just continuous hits all night. Without the 02 he'd be screwed completely.  He pretty much has to keep it on all night and even then.  But, on the plus side, it keeps them tamed a little.

Thanks, but it's okay as he has the continuous flow machine.  The setup takes 02 from the air so it never runs out.  If he had tanks that you have to fill it would cost us  fortune!

helplesswife wrote on Nov 4^th, 2012 at 7:47am:


I understand the cost side, but just so long as you are aware of the loss of abortive effectiveness when using less than 100% oxygen.  There can be a big difference.  From the oxygen page here:

Quote:


edit: Lenny, I was looking up the same thing when you posted very shortly before.   

Quote:

And that's 10 lpm of 85-90% O2 concentration instead of the 100% concentration you get from bottled O2.

Getting a large welding tank of O2 is relatively inexpensive. Please don't try to buck the advice about how to use the O2.

And another thing - it's well documented that strapping on the mask and trying to sleep with it DOES NOT WORK as a preventative. O2 will only help once an attack has started (abortive - not preventative). Then the idea is to SATURATE the serum O2 level as quickly and completely as possible. This is how people around here can claim such quick relief. I usually abort in about 4-5 minutes.

A big welding tank (M-sized) will last me 2-4 weeks when used properly.

Perhaps a poor choice of words on my part. I apologize.

But everywhere in the literature it says 100% O₂ at a minimum of 15 lpm. 25+ lpm - a rate that supports hyperventilation - is what is called for.

• Give the concentrator back.
• Go to a welding supply house and get a big ol' tank of pure O₂.
• Go to Harbor Freight and get a welding regulator.
• Get yourself (or in this case, your husband) an O₂ptimask.
• Hook it all up.
• Tell him to crank it up at the first sign of an attack.
• Breathe deeply and rapidly until the attack abates.

O₂ does NOT work as a preventative - only as an abortive.

Quote:


I'm not sure how it goes in Canada, but you got a prescription from a doc, then you contact a provider who delivers oxygen?

That is how it basically happens here, with insurance.  If so, then as a first attempt, contact your oxygen company.

When the provider first brought oxygen to my house, they gave me a consentrator, like yours, and tried to convince me that is what I needed.  No, oxygen tanks.  They were a bit resistant -- this is the same thing, blah, blah, blah -- it seemed only more convenient for them to charge a rental fee and not have to deliver oxygen.

Whatever, with their disappointment and all, they reluctantly took back the consentrator and then delivered tanks, continuously whenever I've called for refills.

If this is the way it works in Canada, can you have them come pick up the condenser as the wrong equipment and bring oxygen tanks?  Tell them your doctor prescribed oxygen, pure oxygen only as required for clusters.  Not knowing, you made a mistake in taking a condenser and it is not working for your husband.  It must be only pure oxygen from tanks to be effective.

Something like that.