Hello,

I'm going crazy with questions over here because my CHs have come back after just a month or so of being HA free. I'm a long time episodic CH sufferer and I've never had back to back cycles. In fact, in recent years I've gone 3, and 5 years between attacks. I had a very long, miserable  cycle this past fall/winter which ended mid to late January. After my cycle ended, within a month or maybe less, I began to have shadows again. Then bam, last night and early this morning I was hit HARD! At one point I found myself crying on the bathroom floor, trying to force myself to throw up from excruciating pain.

Could I be going from episodes to chronic? I'm freaking out!
I'm under a ton of stress (in the process of buying my first home). Also, we never really had much of a winter this year in AZ so there have been crazy fluctuations in weather this year without much of a pattern. Could this make matters worse? I already blew through my PTO during my last cycle so I don't know what I'll do if I need to take more time off...

Please help! Any advise or relevant personal experiences would be greatly appreciated.

Thanks!
Brad

CH is predictably unpredictable it seems. Whilst most people have their CHs on the same side each cycle, it can change for others, normally between cycles but sometimes during cycles. I've had it switch for a handful of CHs during a cycle which was confusing to say the least. I've not seen any consensus on it meaning anything though.

Some people do get cycles close together and some years apart, plus it can change. It is the nature of CH.

And don't worry about going chronic either, it's probably just a one off double cycle. Even if you are, one CH is just like another. The same medication works as a preventive and the same things work as abortives.

You gain the chronic label once you've gone 12 months with less than a 1 month break. There really isn't any difference between a CH on day 365 of a cycle and one on day 366.

There have been a few times when people who are episodic and chronic debate which is easier to manage and each group seems to be convinced that they find it easier.

Verapamil, sumatriptan and melatonin are pretty good tools against CH.

Have you looked at oxygen? With a non-rebreather mask and a 25lpm flow rate I've killed CHs off in under 5 minutes, which is a game changer.

Similarly look at vitamin D3, I've gone over 3 years CH pain free and others have gone even longer with it benefiting just over 80% of people who try it.

One of the best "methods" to mess up our emotional lives is to try and predict the future. The outcome is anxiety and hesitation (inducing blocks to effective living of our lives).

Since you know how to treat yourself when in an active period, accept the validity/effectiveness of what works for you so that you can focus on your life.
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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.

Oh, and mine can go left, right, left/right same cycle - I don't think this is any indication of going episodic to chronic. If it were, I'd probably have gone chronic a long time ago!

Hi Luna,
D3 can alter the way the body absorbs calcium and magnesium and if these co factors are not taken you may find yourself deficient in these too. When my doctor does my blood tests she not only checks the level of D3, but these two as well, as it's important to be properly balanced. That is why the blood tests are important.

Peter510 wrote on Mar 10^th, 2015 at 3:50am:


How long did it take for you to see initial results? I'm on day 6 and getting clobbered every 2 hours at night. High KIP hits after the first 2. Shadows almost all day long.
Thank You,
Beerbarge

No tests yet. I'm an eposodic C head. Had been in remission for 2 1/2 years and it came on a week ago. 4 days before I got hit I had been in NYC drinking for 2 nights.

Im still reactionary at this point in this cycle. Been dealing with this for 16 years. As usual the challenge is my fix is never the same. Last time power drinks would kill a HA on onset. This time no dice.

I half assed the D3 regimen last time. But Im committed this time. I still have some alternative actions I can take if need be and O2 to abort in the mean time.

I look back through the years at what has worked from Melatonin to MM yet it seems like for me it's a one time deal to buy me a couple years.
Thank You for the Reply,
Beerbarge

Peter,

At this point, being in a full blown cycle I won't touch a drop.
The weird thing is, when I'm not in a cycle, and I get a twinge or a minor shadow then go on a Rum bender it all goes away. Almost like a maintenance dose but with Rum.

Hopefully, D3 kicks in soon. But right now nights suck. I'm just thankful for o2.
Hope you stay PF forever,
Beerbarge

Same here Luna except maintaining right side.  Cycle this year ramped up at the autumnal equinox and ended at the vernal equinox.  Went about three weeks pain free and even had some beers. Then I felt that familiar tinge and it seems to have started another cycle.

Crazy stuff.  When people would ask me when it would end I would tell them, at the equinox.  They said you're crazy.  I was right. 

I hope this cycle doesn't last till Fall.

Hoping for best for you.

Steve G

I've  been on the D3 regimen since March 7th. It was not working very well so I took an alternative route 3 weeks in. Took a few times but the Clusters stopped. Got a week and a half PF and thought I was done. BUT I had to fly to NY last week and that same night they came back. Every time I'd lay down one would come on.
SO, now I'm back in a cycle but it's much different. The first one I only got hit at night. This one if I even sit on the chase in the living room(day or night) one will come on. To make matters more difficult O2 is hit and miss. A few weeks ago it would abort a HA in 5 minutes or so. The alternative therapy isn't working either.
I'm running out of options.
Over the years every time I find a solution(melatonin and B50, Power drinks, and others) it won't ever work again.
But I'm gonna keep on fighting this thing with what I have left in my arsenal.

Peter510 wrote on Apr 25^th, 2015 at 3:04am:


Peter,

Thank you for the well wishes.
My alternate therapy this time was a little more aggressive than in the past. But it worked....at least for a bit. I think Batch is right about the pollen. But below is a link to a song about my home town and HA remedy. 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or