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        Cluster Headache Help and Support >> Cluster Headache Specific >> Psychological helps?
        
(Message started by: Matthematician on Jun 6^th, 2006, 11:14pm)

Title: Psychological helps?
Post by Matthematician on Jun 6^th, 2006, 11:14pm

Hey all... I'm an 8-year episodic CHead, about 10 days into my 9th cycle in those 8 years. Still no effective treatment yet, though I may have finally convinced my neuro that O₂ might be a good thing. (I know, 8 years, right?) No luck verapamil, topamax, depakote, betas, and most steroids (though medrol has occasionally wiped out potential cycles before they started... no such luck when the real cycle comes around). I'm running to the drug store to get some good ol' kudzu tomorrow... I know that one wasn't around, or at least wasn't as popular, last year when I faced the beast last.

Anywho... these past 2 weeks of headaches ended a whole PF year. My previous cycle, last year, was the worst ever (I finally learned what Kip 9 feels like... yeesh) and the longest ever, at 6 weeks compared to a typical 3-4. Well, combine that horrifying experience with two or three other very stressful happenings in my life, and after my last cycle was over I wound up clinically depressed. The depression has gotten slowly better ever since, but now it seems that just when that's turned a corner, back come the clusters... in May no less, when typically it's March that comes in like a lamb and out like a lion for me...

I hear it's a common experience that cycles can be precipitated by sudden periods of relaxation or abatement of stress... which just confirms my belief that these headaches are PURE EVIL. What I'm wondering is, if such psychological triggers are real, oughtn't that mean that there could be psychological ways to ease the pain, or at least help one to cope?

One thing I know I do during cluster cycles, when the desperation and depression kick in, is that I tend to treat myself to things: in my painfree times I'll go out and seek thrills, buy myself fun stuff, etc. It makes those PF times a little more bearable, I suppose. Plus, it always happens that one of the first headaches in the cycle - usually a Kip 6 or less - ends with a trace of euphoria, a little extra treat after the pain is gone. And that's fun.

But have any of you sought any kind of psychotherapy during clusters, and if so, have they helped the cycle experience any? I know, I know, in my experience nothing short of serious pharmaceuticals will even touch the pain of an attack. And I'm certainly not ignorant enough to suggest that CH is "all in your head..." ::) Please... even the pain itself is never all in one's head. Just, has anyone found help in coping with clusters through this route?

Working on 8 PF hours now... cooked myself dinner tonight, a major win for the home team these days... but I've got a business trip coming up in a couple days, and nothing sucks worse than suffering far from home...

Happy, PF-waves to all of you...

~matt

Title: Re: Psychological helps?
Post by BarbaraD on Jun 7^th, 2006, 7:23am

Matt,

In answer to your question -- it probably can't hurt to get psychological help, but for most of us this MB has been our psychologist. We can rant, rave, vent - whatever here and everyone UNDERSTANDS. I've been here since 98 and it's done more good than anything I've found.

The one thing most of us chronics have developed is a positive attitude. CH sucks, but we don't let it control our lives.

If you get a chance MEET with another CHer -- that is an awesome experience. For some reason we always BOND immediately - no explanation for it - it just happens. Over the years I've never met another CHer that hasn't been a great person and have never had a conversation lag because we didn't know each other. Like I said - it's awesome.

Keep up the fight and hope your episode ends soon.

Hugs BD

Title: Re: Psychological helps?
Post by chewy on Jun 7^th, 2006, 7:26am

Had a therapist once tell me to be one with the pain. Embrace the pain as being part of your being.

I think the therapist should share my experiance.

Next CH attack she could lay her head on the commuter rail and wait for the Red Line to come along.

Title: Re: Psychological helps?
Post by Bob_Johnson on Jun 7^th, 2006, 7:39am

When we read someone writing about their dread of CH or the anxiety of waiting for the next attack, we are seeing the emotional effects of CH. These reactions are not fixed even by good medical treatment of the Clusters. I first wrote these paragraphs for OUCH a couple of years ago but it did not make the cut when the site was reorganized but I'll be glad to send it to anyone who will send me their e-mail address (use instant message button). (The whole thing is too large to be posted here.) The approach outlined to reduce suffering is developed from cognitive therapy, a well researched therapy used by mental health types. But don't ask for it unless you accept that it takes practice and commitment to make it work! There is no Imitrex injection for this problem.

------------------------------------------------------------------------ ----------------------------------------
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.
------------------------------------------------------------------------

Title: Re: Psychological helps?
Post by Charlotte on Jun 7^th, 2006, 3:56pm

Before I knew this was ch and I just thought I was insane, I invested a lot of time in good mental hygiene and it didn't change the bottom line.

I get comfort from knowing some of the things generally not associated with ch. Although everyone is different, ch alone doesn't kill you or give you a stroke. It is not alzheimers, although it sure feels like it should be. The medicines are probably more damaging than the disorder.

It is a struggle to get through the seconds, minutes, and hours when you're getting hammered, but you can do it somehow.

Like Bob Johnson's article says, there is a difference between pain and suffering. We may not get rid of the pain, but we can try to do as much of our normal stuff as possible.

I'm not offering any medical tips, I just hope you remember who you really are and that people love you.

Charlotte

Title: Re: Psychological helps?
Post by Kris_in_SJ on Jun 7^th, 2006, 7:59pm

Each and every one of my cluster cycles has taken me totally by surprise. I only cycle every 3-4 years - just long enough for me to forget for awhile that I have this horrible syndrome. I have no known triggers, including stress or the lack of it. It just jumps out and bites me in the ass when the time comes around!

The depression that results from a cycle, though, that's another animal. It's why I'm still here- after over 2 years. I find my therapy by talking to other sufferers and helping new ones. So ... I guess talk therapy is good. I don't think it would be so good with a therapist - unless that therapist was also a clusterhead.

Hugs,

Kris

Title: Re: Psychological helps?
Post by Guiseppi on Jun 7^th, 2006, 9:24pm

What Charlotte and Kris said. If you don't have a spouse, a significant other, a parent or adult sibling to lean on, I think an UNDERSTANDING therapist would be a great idea. This board is a Godsend but may not be enough for some. How many posts have you seen from people admitting they'd contemplated suicide. I'm blessed with a wife who lets me vent and whine when the need strikes me. Otherwise I'm sure I'd have needed help by now!!!!

Guiseppi

Title: Re: Psychological helps?
Post by Richr8 on Jun 7^th, 2006, 9:45pm

on 06/06/06 at 23:14:23, Matthematician wrote:

But have any of you sought any kind of psychotherapy during clusters

I agree with a couple of the prior posts. I believe this MB wiil serve you better than any psychologist/psychiatrist is going to be because they are not going to understand what you are going through. Time and time again each of us shows up here with things that are troubling, disturbing, or just overwhelmed from all of the negative effects imposed by the beast. Whether it be pain, sleep deprivation, trouble at work, at home, or whatever, this crew provides support that is not going to be available anywhere at any price. No matter how low I get, the family here can lift me up to a manageable level. I could be wrong, but i do not recall anyone here claiming to be happy about being in cycle, or even the chronics not having some bad days regardless of their ability to cope on a dialy basis. This is a difficult disease/condition that is going to generate or challenge your ability to stay on top emotionally at all times. Allow youself to be depressed. You earned it by enduring regular ongoing and excrucuating pain, sleep deprivation, reactions to meds, etc. When you've had enough and you feel like you are at the end of your rope, reach out here for a hand getting back on your feet. Someone that understands will be here.

Title: Re: Psychological helps?
Post by Matthematician on Jun 8^th, 2006, 7:18am

on 06/07/06 at 21:45:49, Richr8 wrote:

Thanks everyone for your supportive words. I agree that it's not likely a typical psychotherapist will be able to relate to the ordeal of cluster headaches - at best, a good one will know how to treat the depression that comes with generic chronic pain conditions. But as Bob_Johnson said above, the suffering of CH goes far beyond the pain; it's a matter of how we handle our pain-free time too.

I've never met another clusterhead in person... most friends that I tell about it have never heard of such an awful condition before... and as a single guy who just finished college (in a broad sense, completed my Ph. D. after 8 years and am finally done being a student... now I can work for the man at last) I have only the bare minimum support system around me. I had a significant other during my last cycle... well, kind of, since she picked the height of it to decide to leave (brilliant, huh). Thankfully I have family that cares, even if they're a time zone or two away, church friends that remember me in their prayers, and a zillion reasons to keep on living despite the pain. No matter how depressed I've been, I know I've read of much worse on this board, so even in the midst of a cluster cycle I can count my blessings.

So last night I took a leap of faith and used Red Bull to successfully chase away some Kip-4 shadows before they could get worse. It was a bit scary since caffeine has historically been one of my most potent triggers, but it seemed to work like a charm. Unfortunately, the headache resurfaced as about a 7 in the middle of the night, but I writhed my way through it and am only awake now at 6 a.m. because I wager going back to sleep would re-awaken the beast. Started kudzu and melatonin last night, and have high hopes for it, we'll see. Also got a scrip for O₂, now I just have to find a place to fill it. Pretty excited about that.

Anyway, thanks again; hugs and a pain free day to you all.

~matt

Title: Re: Psychological helps?
Post by Kevin_M on Jun 8^th, 2006, 9:15am

Matt,

With the prolonged cycle last year within which a S/O left while you were pursuing a doctorate without the listed meds working for you, were circumstances attached to your last cycle. Conditions being different this time and remembering that preventatives work for each of us in different amounts (for me, verapamil 480-600) and that they can take two weeks to become effective could alter the situation positively this time but with an abortive also helping.
Each of us needs to tailor what works. Already you've found help with Red Bull, which you didn't have last time. The oxygen added should improve further your capabilities of managing more confidently. An extended cycle can make the search for preventatives a priority too, even if it involves revisited some we've tried but in different doses and quantities, as well as new ones like the kudzu and melatonin you are trying. I had previously gave up on verap when 240-360 wasn't sufficient. Some have come back to oxygen to find it effective with the proper equipment.
Expectations and outlook can change, this site has succeeding for so many in accomplishing that.

Welcome, stick around. :)