Hello tribe.  I was just diagnosed with Cluster Headaches after a year of thinking I was dealing with severe migraines without medication.
My neurologist had me try Indocin and it seems like it broke this cycle (which lasted 6 weeks). 
I was depressed throughout because the pain was driving me crazy.  But last week, headache free, I plummeted to into a deeper depression.  I'm now wondering if anyone else out there has experienced a post cycle depression?
Or maybe depression as a result of any type of medication?
Or just any insight into the cluster cycle and the emotional aftermath?
This is all so new to me and I'm trying to wrap my broken head around it...

I can't express how relieved I am to have a diagnosis and to find a community.

Thank you all.

Welcome Shuli! So sorry you're having a rough time of it. Personal experience doesn't afford me any insight into what you are going through, my husband (the sufferer) gets a sense of euphoria once the cycle is broken, but I sympathize. Personally how all CH sufferers aren't walking around with PTSD I don't know.

Keep posting, we'll keep responding, and we'll all work to get you back to where you want to be.

I'd say preparation would help. Research and build your arsenal so you're ready for battle the next time you get a cycle. Action and decision making are tough during depression, but they help pull you outta it. The folks here have quality lives and marriages and friendships. Life can be good- even with CH. I promise.

We discuss depression a lot on this board. Given that it's a lifetime afflicition..and the damn things hurt like hell, it's not all that suprising depression would be a side problem. That's before you count in many of the meds we have to use!

That being said, do not ignore depression. It's like ignoring cancer and hoping that will make it go away. Please consider consulting a professional of some sort. Wishing you peace and some pain free time soon. There's always someone here to talk to.

Joe

Serotonin is a major player in depression; serotonin is a major player in CH. . .I'm not a doctor, didn't stay at Holiday Inn, but I'd have to say where there's smoke, there's fire.

There is both a biological and psychological link between pain and depression. Not surprising, huh? Having said that, post cycle depression is a lot like Post traumatic stress disorder. Everything in us gears up to survive the hits, and when this becomes protracted as it does for many of us, there can be both euphoria and dread (they might come back) leading to depression. Don't forget, depression isn't all of one kind. We are depressed because of a real and historical event that may (will?) be repeated. Coping mechanisms vary, but there are some that are better than others. Talking though a depression is quite effective. Talking and being listened to has a physiological effect on the neural pathways of our brain. They rewire. True too if we don't talk through our depression. We rewire to accomodate depressive moods. Joe's right-don't ignore it. Talk with a supporter, let a doc know, that kind of thing. Blessings. lance

See a fuller discussion on what is depression on page 2
=============================


DEPRESSION IN CLUSTER HEADACHE

Is depression commonly experienced with CH? An often asked question and one which cannot be answered easily because the word--"depression"-has been so muddled that using it, without careful definition, is very misleading.

I'm blue, down, sad, in a funk, and so on. In daily speech, we describe these feelings as "depression."

I'm in deep grief over the death of a loved one; or, my house has been destroyed along with all my priced possessions by a tornado. I'm "depressed".

These are wide-ranging emotions but we use the same word to describe them. At what point do we move from a "normal" emotional state to "clinical depression" which might benefit from some professional assistance? As we usually use the word, "depression", the word, by itself,  does not give any help in making this judgment.

The issue is more complex even when we have a chronic pain disorder or chronic disease of some kind. People with such problems are not automatically depressed but they might become depressed! A play on the word: If I have chronic CH, I may experience a bad day but it doesn't last for weeks OR the emotion might not pass.  This factor: duration of the emotion, is one of the key factors to separate normal (ND) from clinical depression (CD).

I'm having a series of CH attacks and that puts me "down" but when I'm not in pain I can enjoy my family or a supper with friends, etc. The ability to have a positive response which would be expected to pleasant activities: Another marker separating ND from CD.

I'm normally a health person for someone my age but, for reasons which don't make sense to me or my physician, I'm always feeling fatigue, pains, gut distress, or any variety of physical complaints. This pattern is suggestive of CD. We might include insomnia which is not explained by a nighttime CH attack.

Space limitations on our site apply! Issue of depression can be explored at: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE or any of a number of health sites.

Thank you all so much.  Having this type of community that accurately understands something that until now felt so misunderstood is just invaluable.

Amen to that. Don't know what of do if I hadn't found this site. There's nothing worse than finally being pain-free and still feeling lousy. Keep an eye on it. Talk to someone you trust now so that if it gets worse you have someone who is already aware of what's happening. You don't have to go through this alone.

~ Katie

After 30 days and at least 75 CH's and not feeling like working out or riding my bike I'm feeling depressed.
More than ready for this cycle to end.
Over the over dosing and 2 am wake ups.
Really anyone train thru a cycle. I was riding over 100 miles a week plus other stuff and now i'm lucky to make it through a day of work.
How does one maintain a training regimin? >:(

How does one maintain a training regimin?

Livin life between the hits! ;) I try to change as little as I can when on cycle, it's my way of thumbing my nose at the beast. Doing a cross country bike ride leaving March 20, 60 days, 50 on the bike, 10 rest days, coast to coast! Hoping the beast can't find me. :)

Joe

Guiseppi wrote on Oct 30^th, 2010 at 8:01pm:

[i] Doing a cross country bike ride leaving March 20, 60 days, 50 on the bike, 10 rest days, coast to coast!

Are you serious?!  That is SO awesome and inspirational!  Good luck with your training and your trip (I know it's a ways off..but that's just great!).   Just think how many CHer's you could meet going coast to coast...I'm sure any support any of us can offer would be given gladly.

I'll put details out as the route gets planned...would be fun to see how many CH'ers I could meet for coffee accross the country! ;)

Joe

wimsey1 wrote on Oct 30^th, 2010 at 7:20am:

There is both a biological and psychological link between pain and depression. Not surprising, huh? Having said that, post cycle depression is a lot like Post traumatic stress disorder. Everything in us gears up to survive the hits, and when this becomes protracted as it does for many of us, there can be both euphoria and dread (they might come back) leading to depression. Don't forget, depression isn't all of one kind. We are depressed because of a real and historical event that may (will?) be repeated. Coping mechanisms vary, but there are some that are better than others. Talking though a depression is quite effective. Talking and being listened to has a physiological effect on the neural pathways of our brain. They rewire. True too if we don't talk through our depression. We rewire to accomodate depressive moods. Joe's right-don't ignore it. Talk with a supporter, let a doc know, that kind of thing. Blessings. lance

Dr Larry Schor, a clusterhead and Psychiatrist who teaches Psychiatry in Georgia spoke at the Clusterbusters convention in Chicago a year ago, and also at the OUCH convention in Atlanta last summer.  He says all clusterheads have PTSD.  A cluster hit IS traumatic, and how we deal with it determines how well we get along in life.  When I heard him state that in the introduction to his talk I thought "that man is just a p'shrink wanting to tout his brilliance", but he was not.  He kindly in a down to earth manner laid out for us what PTSD is, how it progresses, and how it manifests itself.  I went from a skeptic to a firm believer in what he was saying in just a few minutes.  I had never met the man before he spoke, but he described me almost down to my shoe size.  That opened my eyes to why I react to things the way I do and did a lot to help me get a handle on my own life and CH.  If you ever get the opportunity to hear him or sit down with him take it.

Depression and CH go hand in hand.  There is not question that is one of the big reasons CH is called the Suicide Headache.  If you allow it, it will rob you of every bit of enjoyment of life you can have.  This place and the ability to talk with each other about our lives does more to help keep us on an even keel than about any thing else available in my estimation.  I know the shape I was in before I found this place.  In fact, I very well may not be here had I not found the website several years and a couple of iterations ago.  I also strongly believe meeting another clusterhead and talking face to face makes a tremendous difference.  I strongly urge you to make an opportunity to get together with other clusterheads at any opportunity.  It's a lot cheaper than therapy, and a lot more fun!

Jerry

I've had depression during nasty cycles - especially because my sleep gets wrecked by the CH waking me up, and having to deal with pain until the abortives work.  Post cycle - just trying to recover from the exhaustion of ruined sleep can also give me low grade depression.  My neuro uses Lyrica to bust my cycles (I won't allow her to use Methergine, due to the expensive preventatvie chest x-rays, and echocardiograms that go hand in hand with taking Methergine for longer than a 1 week period [even with insurance, I still owe $2000 from the last time I used it in 2008]), and wouldn't you know it, Lyrica is know to cause depression.  So, even though I know the Lyrica is making me feel like I have a back cloud overhead, it still can suck at times. 

At the 2010 Ouch convention Dr. Schor really touched me when he told us, during a couple of his hard hits, he thought of getting his drill and drilling into the pain in his head.

As he said it was an illogical thought, much the same as the thought of suicide for CH. We can think it, but it's really not something we will act on in the majority of cases.

CH is an ugly thing, but not the ugliest. It's hard to realize this during heavy hits, and believe me it's the hardest thing I've dealt with in my life. Realizing that we will survive the next bad hit is key to dealing with CH.

I'm not perfect at it but I've gotten a little better each cycle. The pain is the same but my attitude is much better. Also having the best tools available makes a huge difference.

Love to All,   Don

Skyhawk5 wrote on Oct 31^st, 2010 at 11:14pm:

CH is an ugly thing, but not the ugliest. It's hard to realize this during heavy hits, and believe me it's the hardest thing I've dealt with in my life. Realizing that we will survive the next bad hit is key to dealing with CH. I'm not perfect at it but I've gotten a little better each cycle. The pain is the same but my attitude is much better. Also having the best tools available makes a huge difference. Love to All,   Don

I remember very clearly a time not too long ago, I was waiting at that place where everyone knows your name...the pharmacy...and while a Rx was filled, I wandered over to the book section. I found there a medical text on painful conditions and the sort of treatments recommended or used. I looked up trigeminal pain because of the cluster headache associations, and found just what you were saying, Don. There are some whose pain is so intense, so unrelenting, and so unyielding ever they are put into chemical comas because they cannot cope. My hits, and my pain, were bad. But I thanked God right then and there that I was not that bad.

Cold comfort, I know. But comfort still. I knew I could survive, I would survive, I would live in between hits, and I would keep faith. I, too, was saved by this site and would do nothing intentionally to betray that trust, confidence and community we offer one another.

Pax and blessings! lance

PS Hey Joe, if you get to the NE area, let me know. We'll find a way to at least meet. And if you need a turnaround crash site or something, let me know. There's a room awaitin' ya in MA.

PS Hey Joe, if you get to the NE area, let me know. We'll find a way to at least meet. And if you need a turnaround crash site or something, let me know. There's a room awaitin' ya in MA.

Yer a gentleman indeed sir! ;)


Joe

wimsey1 wrote on Nov 1^st, 2010 at 8:18am:

I remember very clearly a time not too long ago, I was waiting at that place where everyone knows your name...the pharmacy...and while a Rx was filled, I wandered over to the book section. I found there a medical text on painful conditions and the sort of treatments recommended or used. I looked up trigeminal pain because of the cluster headache associations, and found just what you were saying, Don. There are some whose pain is so intense, so unrelenting, and so unyielding ever they are put into chemical comas because they cannot cope. My hits, and my pain, were bad. But I thanked God right then and there that I was not that bad. Cold comfort, I know. But comfort still. I knew I could survive, I would survive, I would live in between hits, and I would keep faith. I, too, was saved by this site and would do nothing intentionally to betray that trust, confidence and community we offer one another. Pax and blessings! lance PS Hey Joe, if you get to the NE area, let me know. We'll find a way to at least meet. And if you need a turnaround crash site or something, let me know. There's a room awaitin' ya in MA.

I'm so glad I clicked on this thread.  This post has really helped me.

It's 06:25am here in England right now, and I've just got out of bed after being woken up for the 4th time tonight with my 4th CH of the night.

I've run out of sumatriptan (a couple of weeks ago) and haven't had the money to get a taxi to my doctor's office, so I've been using cheap ibuprofen and suffering 30-45 minutes of agony each time, waiting for it to take effect.

This is the second night in a row I've had 4 attacks in a night, which yesterday was my new record.

I'm feeling rough as hell from lack of sleep and ludicrous amounts of ibuprofen in my system and during attack 4 I was seriously considering phoning an ambulance to take me to the local hospital in the hope I could get some sleep there.

Your post helped me re-realise that there are people out there that have it even worse than I do, and that has helped break my instantaneous post-CH mindset that I had when I came downstairs, so I just want to say thanks for that.

As for the original topic, that of depression + CH, I've had a number of periods of depression in my adult life, though I've always attributed them to other aspects of my life as various negative things have been happening at the time that I assumed triggered the depression... deaths in the family, bad break-ups etc... but now I'm wondering whether being a CH sufferer might make someone more succeptable to depression in the first place.  If so, it'd make me feel better about my periods of depression, because it would mean I'm not just an emotionally fragile child in a man's body.  ;D

Guiseppi wrote on Oct 30^th, 2010 at 8:01pm:

How does one maintain a training regimin? Livin life between the hits! ;) I try to change as little as I can when on cycle, it's my way of thumbing my nose at the beast. Doing a cross country bike ride leaving March 20, 60 days, 50 on the bike, 10 rest days, coast to coast! Hoping the beast can't find me. :) Joe

That is SO cool!  Best of luck with that!

Hey musophil, you're welcome. It's what we're here for. And yes, as you've gleaned, CHs as a primary headache, are themselves a cause of depression. And it is possible the very same mechanisms that cause CHs could be involved in producing clinical, or characterological, depression. They are certainly enough to be depressive all by themselves. Hang in there. Read the O2 link at the left. It's cheap, effective, and available from a wide variety of outlets. Blessings! lance

***Update and profound Thank Yous***

When I posted all of this last week, I was at a point that I was just able to come up for air after one of the scarier bouts of depression that I've ever had.  I toed the line a little too close. 

Thankfully, I managed to have a very meaningful turnaround and it was in very large part due to the precise, sympathetic, loving and fast responses from everyone here.  We might not know each other in person, but because we are bonded through the same pain, I feel in some ways more known here than I could have imagined.

Reading inspiring words from supporters of sufferers, from you strong brave souls that have been battling this horror for years on end and sharing your insights seems to have put a stable ground under something that felt so bottomless.

I'm building support in my immediate life to help with the cycles, but this support here blew me away. 

funny enough, I laughed when I first read about the behavioral symptoms that people exhibit when dealing with an attack (squeezing head, rocking back and forth, thinking you're bleeding) because it was so bizarrely accurate.  Now I exhibit another similar symptom by saying I don't know what I'd do without this place.

Just a short week later, I'm surprised to find myself laughing, working and living.  last week, I would've told you that was impossible. 

I'm humbled by your strength and honored to be amongst all of you...

Let's keep fighting through it.  We're worth it!!

So glad you updated us, I've been wondering how you were doing!

So very glad you are doing better- LOVE to hear things like that! Wishing you many painfree days!

Glad to hear that you are doing better. It is a struggle and though this time may have been really bad, next time might just be that much better. It really does vary from cycle to cycle. This one hit me particularly hard this year as well. Could have been the HA's or just the fact that summer is over and then I get to deal with this nonsense. In any event, the end appears to be near and brighter days are ahead, hopefully for many of us.

Take care and good luck to you. We're all in this together.

~ Katie

Shuli wrote on Nov 3^rd, 2010 at 12:55pm:

[snip] ... funny enough, I laughed when I first read about the behavioral symptoms that people exhibit when dealing with an attack (squeezing head, rocking back and forth, thinking you're bleeding) because it was so bizarrely accurate.

;D Me too.  Especially hearing it described as "The Dance".  What a wonderfully disempowering term for something that must look to an outsider like the actions of a person you would only usually see in a rubber room wearing a jacket with arms that tie behind the neck.

It's great to get a laugh about this amongst good company :)

Thanks Lauren & Katie.

Lauren - your msg about having a quality life and family with CH was very inspiring.  You're a great supporter and your husband is lucky to have you!  Thanks for following up!

I think things really vary from cycle to cycle.  Speaking personally, I'm in the midst of the longest, toughest cycle I've ever had and I'm having a really tough time getting through the day to day stuff.

Work, family etc all take a little more out of you when you're getting hit 6 times a day. Then I get upset with myself because my job performance suffers or I think that I'm not being as good of a father to my little girl as I know I can be; that's depressing.

As has already been said in the thread, try to live in between hits but there are times where it's harder then others.

primetime wrote on Nov 3^rd, 2010 at 2:55pm:

I think things really vary from cycle to cycle.  Speaking personally, I'm in the midst of the longest, toughest cycle I've ever had and I'm having a really tough time getting through the day to day stuff. Work, family etc all take a little more out of you when you're getting hit 6 times a day. Then I get upset with myself because my job performance suffers or I think that I'm not being as good of a father to my little girl as I know I can be; that's depressing. As has already been said in the thread, try to live in between hits but there are times where it's harder then others.

I hear you loud & clear, having just come out of the worst 12 months in my 30 year CH career. The depressing thoughts of how the beast is limiting and diminishing our quality of life and capabilities are almost inevitable.

However, my Dad had CHs and I could talk to you for hours about him and never mention it. It was a non-factor in our relationship. I believe it would be the same for my kids who are now in college. Yes, there have been things I could not do occassionally or events I had to abruptly exit but I don't beleive they would think to mention CHs when describing me (they might mention my many other faults, lol).

By mentioning your daughter, I am sure you are a great Father. Same with your concern about your job, etc.

The great thing about us clusterheads is that we are so smart and good that even at 80% we are better than most at 100%!

Hang tough...this too shall come to pass!

Gator Bill wrote on Nov 3^rd, 2010 at 6:29pm:

The great thing about us clusterheads is that we are so smart and good that even at 80% we are better than most at 100%!

I know that's right!!!    8-)

Old post I know, but I have similar issues with depression after my episodes.  I have suffered for 6 years, especially THIS one.  I find that I may be depressed up to a month after I get the attack aborted.  Which sucks because lately it's only waited about 2-3 weeks lately to come back!  I don't think post episodic depression is uncommon and probably stem, at least for me, from the dread and loathing of knowing that I will be back to the grindstone soon.

I completely agree, the dread of the devil's return is definitely a big part of the depression. 

Even this morning waking up, for whatever reason, I found myself in a position very reminiscent of how I would lay before an attack (arms around my head and crouched) and I quickly remembered the nightmare.  It feels like it's never far away.

I hope you don't hit the grindstone too soon, Jared.

Gator Bill wrote on Nov 3^rd, 2010 at 6:29pm:

primetime wrote on Nov 3rd, 2010 at 2:55pm: I think things really vary from cycle to cycle.  Speaking personally, I'm in the midst of the longest, toughest cycle I've ever had and I'm having a really tough time getting through the day to day stuff. Work, family etc all take a little more out of you when you're getting hit 6 times a day. Then I get upset with myself because my job performance suffers or I think that I'm not being as good of a father to my little girl as I know I can be; that's depressing. As has already been said in the thread, try to live in between hits but there are times where it's harder then others. I hear you loud & clear, having just come out of the worst 12 months in my 30 year CH career. The depressing thoughts of how the beast is limiting and diminishing our quality of life and capabilities are almost inevitable. However, my Dad had CHs and I could talk to you for hours about him and never mention it. It was a non-factor in our relationship. I believe it would be the same for my kids who are now in college. Yes, there have been things I could not do occassionally or events I had to abruptly exit but I don't beleive they would think to mention CHs when describing me (they might mention my many other faults, lol). By mentioning your daughter, I am sure you are a great Father. Same with your concern about your job, etc. The great thing about us clusterheads is that we are so smart and good that even at 80% we are better than most at 100%! Hang tough...this too shall come to pass!

I appreciate the kind words.

I can't even begin to express how grateful I am that I found this board. I don't post often but read the board daily, both in and out of cycles.

This community truly is a god-send.

i know deep depression is coming after my cycle. very strange to know this huge wave of depression is coming. post traumatic stress.

This is a fuller/better discussion on the nature of depression and it's various presentations than I posted on page 1.

See PDF file, below.

---

I was very interested this morning to find this thread on the board.  I've had CH since age 16 so been battling episodes for 25 years.  Never had issues with depression until after the birth of my first child.  Interestingly, never had an episode of CH during pregnancy or breast-feeding which got me to thinking about the hormonal aspects of CH on which there are some great threads on this board.  I'm also just coming off one of the longest and worst cycles I've ever had (heard that quite a bit on this thread and wondering why so many of us are saying it??).  Anyway, to get back on track, since finding this board (I concur with you all that it has been a life-saver!!) I've been wondering about the connection between hormones, depression, and CH.  Seems to be a lot of similar body chemistry involved starting at the hypothalamus.  My depression did not start with CH though but was post-partum (although looking back maybe you could consider post-partum as PTSD!!).

Sorry for the ramble - been pain free for 9 days now and am high on life making me a little goofy!  Going to start a new thread on how do you know when a cluster is over.  I woke up last Wednesday and I just knew it was over (no pain, felt like a weight had been lifted, and no longer overly sensitive to bright sunlight), after having relentless shadows all day Tuesday, it seemed like a miracle.  I've never experienced this before and was wondering if anyone else had?

Thanks for all the support!

Karen

Before going chronic, yes, I did know when the cycle was over. No shadows, no pressure, no "buzzing" around my nose...until the cycle came back again that is. Congratulations on 9 pf days...may they last forever! lance