My hubby is having a hard time coping with this cycle between the pain  and the lack of sleep. He is only 3 1/2 weeks into his cycle which last time lasted 4 months.  He has a dr appt tomorrow with a headache specialist whom we are hoping can help him.  Can anyone give me any advice or coping strategies to help him?  I have never seen him this bad before.  He usually gets down at the beginning and then gears himselft up for the fight.  This has been like a rollercoaster ride.  He is using oxygen as his abortive.  Doing the D3.  He is a mess and having problems concentrating on anything.  I don't know how to help him so I am a mess as well.

Lori

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Since you have the right move to see a headache doc, just try and be patient today and see what the doc has sto offer.

Frantic looking for a fix today is understandable but, untimately, leaves you in empty tension.

Make a commitment to give yourself--and the new doc--time to try what he has to offer. Don't try treatments other than the ones he sugets because it will consufe the picture as he is trying to help you.

Your faith comes from knowing that the vast majority of us here have come through with success.

Fixed my profile.  I am just plain stressed and tired.  Can't imagine  how he feels.  This feels like someone is invading our home and torturing him in front of me multiple times a day and there is nothing I can do about it.  Perhaps this has turned into my rant.  But with the way he is talking....It is really getting to him.  I am looking at him now and he is broken.  He is so worried about work. I told him to let go of it.  He can only do so much.  And if he can't, he can't. 

We know too well what it can be for a ClusterHead running out of cope, running out of hope, and it's a horrible place to be.

I can't begin to understand what that must be like for a supporter.

Please accept that we're with you all the way and truly wishing you strength, happiness and an end to this nightmare.

Better days must lie ahead,

Brian, who cares.

Lori,

Bless you for being such a great supporter. You cannot imagine how important that is.

With regards your Hubby worrying about work, he does not need that sort of additional stress when he should be conserving his energy to fight the Beast.

In the following link is a letter which may be of use in explaining his situation to bosses and colleagues. It has helped some others in the past.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Best of luck with the Headache specialist.

Peter.

For seeing the headache specialist, make a list of questions you want to ask and tick them off, writing notes as you do, so you make sure you've covered all you want to cover. It's so easy to forget something until 5 minutes after the end of the appointment.

Sometimes with CH (and other headache types for those that get them too), the whole thing can get to you, which isn't too surprising. As Brian commented, it isn't a fun place to be at all. But those times don't last forever, it's just a matter of getting through it to when things bounce back and living between the CHs.

You might want to ask about a prednisione taper to give a few days respite, that might help in the short term.

Supporters like you are amazing too. I don't know how you do it. Keep it up and look after yourself too.

Hope tomorrow goes well, do report back.

I have seen the letter.  My husband is a subcontractor for a big box store and he installs doors for a living so there is a lot of stress to begin with.  Plus multiple different customers on a daily basis.  Calling customers to schedule installations and measurement of doors to be installed are part of the load I am trying to take off him.  This time of year people just want their doors in.  So far most everyone has been decent except one.  But he still worries.  I told him to let it go.  The field manager knows he is in cycle but I don't think he has ever taken the time to look at what cluster headaches even are.  I sent him that letter last week. The people in the store know and they are not hassling him much.  Things are starting to back up some.  I think his stress lies with the customers.  He is a perfectionist.

Will let you know how this appointment goes.  Been praying all night that this one will be of some help but mostly that he is experienced with this damn beast so my hubby can feel confident in what ever is suggested.  He was snoring between hits last night so at least I know he got some sleep.

Lori

Lori,

From a sleep perspective he could try taking 15/20mg of Melatonin about an hour before going to bed.

Keep the faith,

Peter.

Try this -
At the very first sign of pain (don't wait till it's bad) get him to gulp down a redbull, really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do - Monster, Rockstar etc. It doesn't work for every one but many people get some relief from it. It's cheap and easy to get hold of, so worth a try.

Imitrex is the best abortive if you can get it. The injections will kill off a big one in 5 - 10 minutes so he needn't be out of action for long. The tablets take too long to get into your system to be much help as an abortive, but if he takes one at bedtime it often keeps the beast at bay for 3 or 4 hours, allowing a little sleep.

Pefectionism is a mean task maser, punishing us even as we do our best.

I'm now living in a retirement commulnity run by the Quakers (Religious Society of Friends). Not an obviously religious environment Quakes (as we call them<bg> but they do have attitudes about life wich mellow out the hard spots.

As you would expect, about 25% of the residents are well aware of their physical decline and the consequences. Six of us got to talking about these changes, the impacks, and the evential outcome--all over supper a week ago.

It was a delight (!) that we had bursts of laughter from time to time talking about our awareness of what will affect each of us. Basically, each of us knew that we can't avoid the reality of our age but we clearly were not afraid or avoiding of what comes with the territory. It was the accepting of what we can not control or avoid that gave us release from fear.

This is not a state of mind which you can command into being. It can be nurtured and cultivated into your life when you starting facing reality vs. avoiding yourslef into fear and angst. Seek a guide to help develop this state of mind--but only after your new doc gets the immediate pain is under control. But the bottom line: working to get our state of mind under control is a critidal part of getting back to well being. (But, again, a goal/project to work on after the doc has the current crisis under control.)

Finally, let it make it clear: what I'm describing if NOT a resignation to hopelesness! It's just a neat way to avoid the pain or the feelings of "failure" over things which are out of our control.

Try the zomig 5mg nasal spray as an abortive. It's helped me tremendously. If he takes it when they start comin on it should help him alot. I've dealt with these for 14yrs and know why they're called suicide headaches. It's worth a try. The imitrex works too but don't last as long for me. If they last 35mins that's a bad one now. I thank God everyday for leading me to the neurologist in Georgia. Hope n pray. That's all we can do.

Bob Johnson wrote on Dec 9^th, 2015 at 10:38pm:

Pefectionism is a mean task maser, punishing us even as we do our best. I'm now living in a retirement commulnity run by the Quakers (Religious Society of Friends). Not an obviously religious environment Quakes (as we call them<bg> but they do have attitudes about life wich mellow out the hard spots. As you would expect, about 25% of the residents are well aware of their physical decline and the consequences. Six of us got to talking about these changes, the impacks, and the evential outcome--all over supper a week ago. It was a delight (!) that we had bursts of laughter from time to time talking about our awareness of what will affect each of us. Basically, each of us knew that we can't avoid the reality of our age but we clearly were not afraid or avoiding of what comes with the territory. It was the accepting of what we can not control or avoid that gave us release from fear. This is not a state of mind which you can command into being. It can be nurtured and cultivated into your life when you starting facing reality vs. avoiding yourslef into fear and angst. Seek a guide to help develop this state of mind--but only after your new doc gets the immediate pain is under control. But the bottom line: working to get our state of mind under control is a critidal part of getting back to well being. (But, again, a goal/project to work on after the doc has the current crisis under control.) Finally, let it make it clear: what I'm describing if NOT a resignation to hopelesness! It's just a neat way to avoid the pain or the feelings of "failure" over things which are out of our control.

Aging and his ability to cope with the beast this time around was part of our conversation on the way to the specialist yesterday.  We decided it was either aging or the fact that he had had the longest remission ever (2.5 years)  hoping it had vacated his body forever.  But then we also though about the fact that he went through a lengthy bout of insomnia for around 20 days and then the cycle started so he was at a deficit already.  Probably a combination of all three!

Perhaps once he is sleeping better again, his frame of mind will follow suit.

Lori

Lori:This is what I was trying to convey in my last message. The bottom line: we have more influence over our emotional life than we believe.
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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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Remember that the pain will pass.
It's the anxiety and potential depression that can be crippling even more so.
Breathe!

And... Heed Bob's brilliant words!
They've helped countless people including myself!