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Emotional symptoms (Read 6439 times)
Sarah Bryan
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Emotional symptoms
Nov 23rd, 2017 at 3:54pm
 
Hi everyone,
New to the board -- greetings! I'm a fairly new CH sufferer -- one severe introductory batch a couple of years ago, several milder ones since. I'm wondering what others' experiences have been regarding coinciding emotional symptoms. Are irritability and depression typical during the general cluster period? The only discussions I've found online about the subject refer to irritability and depression while actually in the midst of the pain -- which seems entirely obvious -- but I'm wondering more generally about emotions that might be symptomatic of the disorder but not resulting from the pain itself.
Many thanks,
Sarah in NC, USA
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AussieBrian
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Re: Emotional symptoms
Reply #1 - Nov 23rd, 2017 at 9:20pm
 
For me it was always the fear  -  during cycles the fear of the next hit and between cycles the fear of the next little reminder that the nightmare was to begin yet again.

I've stopped having CH but the memory of the fear remains etched so clearly in my mind.

I truly believe it was worse than the pain itself.

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BobG
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Re: Emotional symptoms
Reply #2 - Nov 23rd, 2017 at 10:06pm
 
Last January I finished a 6 year chronic cycle. I’ve had 2 minor attacks since then. I agree with Brian, the fear is still there. Every night before bed I hear myself asking “is tonight the night”.
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jon019
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Re: Emotional symptoms
Reply #3 - Nov 24th, 2017 at 2:06am
 
welcome Sarah...sorry you have to be here...but it's a family...and you'll be glad you are...

I agree with Brian and Bob...anticipation of what you KNOW will be soul crushing pain is as bad as the ch itself. one of the reasons I've always considered ch 'the beast" is because it is almost malevolently alive, devious, and lurking...you can' run, you can't hide...all you can do is have a plan, the right tools, and the proper attitude....took me YEARS to get there.....

...oddly the depression and irritability...for me....was in between cycles when episodic. in cycle I was too busy to deal with anymore crap than was already on my plate. when turning chronic the hits were lesser and my knowledge of how to deal is greater

fatigue was a different story...it followed me always...lack of sleep, stress, adrenaline deficit....never quite figured out that one...

Best

Jon
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Peter510
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Re: Emotional symptoms
Reply #4 - Nov 24th, 2017 at 6:06am
 
Sarah,

I believe that depression is more widely experienced among Clusterheads than is realised. It is, after all, historically known as the suicide Headache.

In my 20 years suffering not one Doctor or specialist ever asked me about my emotional state.

I am currently working with the European Headache Alliance on setting universal standards for CH information, for both patients and medics throughout Europe and I have to keep reminding everyone that the psychological impact must be highlighted.

So it is common enough for depression to creep in. Make sure you discuss this with your own doctors.

Regarding irritability, one of the features of CH is the need to be left alone during an attack. As others have said, irritability between attacks stems from your fear of the next hit.

This is all perfectly natural, so don’t worry about it. Just explain to those around you why it happens.

Best wishes,

Peter.
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Mike NZ
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Re: Emotional symptoms
Reply #5 - Nov 24th, 2017 at 9:35pm
 
Hi and welcome Sarah

If you read through a few pages of posts in the "Getting to Know Ya" section of the forum you'll see where people with CH have had to deal with not just the pain but the secondary impacts which can include losing friends, partners, jobs and so much more. Add into that the pain of not just one CH but the repeated pain, it is hardly surprising that with CH,  like many other chronic pain syndromes, there is a significant likelihood of the person having emotional issues from irritability to depression.

Or you could look at it from a different viewpoint, would it be more surprising if we could go through everything and it not have an emotional impact?

Before D3 worked its magic with my CH pain I had a phase where I had a CH every night at the same time to within a minute, but mostly the time was fairly random through out a day. I found it a lot easier to handle the perfectly timed one as I could have everything prepared with oxygen on hand to kill it. In contrast with the randomly timed ones where I had to be prepared for CH to happen anytime and anywhere, which is so much harder to manage.

If you (or anyone else reading this) needs help, just ask. As Peter wrote, doctors often don't ask, but you can always do so. And if you don't get the response you need ask again or ask someone else until you do.

Recently for a different chronic pain issue I've been working with the local chronic pain service with great results (it surprised them how effective it was). They seem to have a very different approach with them looking at a much wider picture than I've experienced with neurologists / headache specialists focusing just on headaches. They were very much aware of the limitations / side effects of pain medication, so the focus was more on how to manage it covering the pain and emotional side too.
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maz
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Re: Emotional symptoms
Reply #6 - Nov 28th, 2017 at 6:30am
 
Apart from the fear that the others have mentioned, there's also depression caused by sleep deprivation.  It's hard to go about your normal day when you've been awake all night, every night.  The tiredness builds up till you're at breaking point.

Also, you worry about your family because they are so worried about you.  Watching your loved ones have that fear is awful.  When they suffer along with you, you feel guilt.

Then theres the emotional impact of having time off work, losing money, and not being able to pay your bills. Some people have lost their jobs and homes.

And lets not forget frustration.  When your friends roll their eyes and call you a drama queen for causing such a fuss over a simple headache, and then tell you to take an asprin and get over it.

CH has a lot more to answer to than pain.
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UKJoeK
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Re: Emotional symptoms
Reply #7 - Dec 13th, 2017 at 11:15am
 
Fear and anxiety are the main problems for me and it was made worse when I finally found out what I was suffering with and read up on it.  It's a horrible condition but far worse for some than I've ever had it.

My CH bouts were regular and quite predictable at first but around the time I was diagnosed I started having bouts of shadows and I always wondered whether these were triggered by anxiety.

Irritability and depression are obviously going to go hand -in-hand with a morbid condition like this that robs you of sleep and dignity.  When you're mid-bout, it's hard to think about much else.
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dtruett
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Re: Emotional symptoms
Reply #8 - Dec 23rd, 2017 at 2:55pm
 
I agree with all of the other posters above. Yes, I too also get depressed when I'm in a cycle and basically hunker down and try not to deal with anything else life throws my way if it can be avoided.

Sleep deprivation and fatigue? Absolutely.
Fear of the next headache as soon as my head hits the pillow? Certainly, as I can get up to 7 per night.
Depression and anxiety as above. You bet.

I'm just not a good person to be around when I'm in a cycle and try to avoid contact with others as much as possible. Miserable way to live.  Sad
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Esheel31
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Re: Emotional symptoms
Reply #9 - Jan 13th, 2018 at 10:36pm
 
My Neuro will quickly tell you he believes most CH sufferers exhibit symptoms of PTSD.
Depression,anxiety,irritability,fear are common for me.
The effect this disease has on an individual is two-fold.
Physical and mental.
Suicide headache is an accurate description.
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Mike NZ
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Re: Emotional symptoms
Reply #10 - Jan 14th, 2018 at 12:00am
 
Esheel31 wrote on Jan 13th, 2018 at 10:36pm:
My Neuro will quickly tell you he believes most CH sufferers exhibit symptoms of PTSD.


I'm not surprised by that at all.

As I've said elsewhere, when I was being diagnosed my neuro asked me that if I was given a pistol during a "headache", would I consider using it. She said that everyone with CH would consider it and people without CH wouldn't.

Based on this, it would be amazing if just about everyone wasn't affected in some way.

This probably extends to people with other significant headaches like SUNCT and similar.
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AussieBrian
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Re: Emotional symptoms
Reply #11 - Jan 14th, 2018 at 2:11am
 
Just thinking back,  I'd say the vast majority of the CH poetry posted here over the years referred not to the pain at all,  but to the dreadful emotional effect it has on those who must endure it.



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jon019
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Re: Emotional symptoms
Reply #12 - Jan 14th, 2018 at 3:53pm
 
Mike NZ wrote on Jan 14th, 2018 at 12:00am:
Esheel31 wrote on Jan 13th, 2018 at 10:36pm:
My Neuro will quickly tell you he believes most CH sufferers exhibit symptoms of PTSD.


I'm not surprised by that at all.


Based on this, it would be amazing if just about everyone wasn't affected in some way.


Absolutely....I often wondered why I was not insane. How can a person survive...let alone thrive
with incomprehensible pain like ch....dunno...guess I figured I could go nuts later...too busy right now.

I don't understand PTSD enough to comment on that particular diagnosis. For me...when episodic and OUT of cycle I battled depression that was nearly non existent when IN cycle. Also put back on the 5-10 lbs I lost every time when in......

Best

Jon
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« Last Edit: Jan 14th, 2018 at 3:56pm by jon019 »  

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Mike NZ
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Re: Emotional symptoms
Reply #13 - Jan 15th, 2018 at 2:28am
 
The PTSD diagnostic criteria as used by the US VA can be found at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. These are taken from the diagnostic criteria developed by the American Psychiatric Association.

It is easy to see the potential for people with active CH could tick off many of the criteria.

You can also imagine what the life of someone with CH was like 100+ years ago with no effective treatment. I wonder how many ended up in an asylum or were considered to be possessed? So in many ways with modern medicine plus preventives and abortives we are lucky to be alive when we are.
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jon019
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Re: Emotional symptoms
Reply #14 - Jan 15th, 2018 at 3:19am
 
Mike NZ wrote on Jan 15th, 2018 at 2:28am:
You can also imagine what the life of someone with CH was like 100+ years ago with no effective treatment. I wonder how many ended up in an asylum or were considered to be possessed? So in many ways with modern medicine plus preventives and abortives we are lucky to be alive when we are.


I've thought about that often too....have had several other "interesting' ailments that would have been terminal...maybe only 25 yrs ago.....I remain a blessed and lucky man.....

Saw a special on Abe Lincoln....who had depression and migraines.... among other problems. The treatment was oral mercury compounds. YIKES!...they sure loved their mercury back then...used it for everything from STD'S to hysterical conniptions. He finally figured out...on his own...they were doing more harm than good..... and stopped.....sounds like what a smart clusterhead would do too..........

Best

Jon

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« Last Edit: Jan 15th, 2018 at 3:27am by jon019 »  

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The Thinker
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Re: Emotional symptoms
Reply #15 - Jan 19th, 2018 at 5:09pm
 
I absolutely agree - whilst I'm in an episode it's incredibly hard not to bring everything back to the disease. Example watching tele last night the four daily affairs presenters poured a glass of champagne to celebrate the NZ PMs pregnancy announcement, immediately I see the champagne and feel disadvantaged knowing if I joined in and suggested to my wife to share a glass of bubbles I'd be straight on the path to a horrific cluster, the topic seems always to be front of mind.
Self-worth is a massive thing for me, all the things I cherish in life like my wife, son, dogs, a job I love, they all deserve better than what I can offer when I'm in an episode, feelings of they'd be better off without; the mind then leads to thoughts of justifying suicide - it's just nuts but in being honest these are some of the dark thoughts that occur for me.
Crying has helped, I never cry, can't think of the last time but since an episode has started a week ago taking 5 mins by myself to let a few tears roll I've found is a great release so if I feel like crying, in a moment of despair, I've promised myself to just let it roll - we cry for a reason and it's natural so I figure there must be a level of therapy in it, a treatment if you will, for my soul and spirit.
For me, given my previously spaced 2 past episodes lasting 4-5 weeks each every 2 years at the same time of year (height of summer) allows me to see a light at the end of a cluster: and helps to brush those crazy thoughts of self harm in particular in the height of an attack to the side.
I'm confident that this time around, I've much to be thankful to the members here for sharing so much help and experience that whilst I'm not totally armed with all the preventatives and abortives I'm well on the way to understanding them and obtaining them. Without the forum and the input of all I'd be none the wiser in getting a diagnosis (so a big thanks to you all)
I look forward next week hopefully to killing off any attack with o2 for example so I think in summary from gathering the experience here that the key to maintaining the best emotional state possible living with CH is about hearing and believing that this need not define your life. There is a way to stay on top and manage this thing and to anyone reading the forums for the first time, have faith and confidence you aren't alone, there's a path forward for you (and me!) and it's completely natural with something so painful for your mind to venture to some pretty dark places.
I for one try and focus as best I can on counting my blessings for the great things in life (even if for you that's a Big Mac with extra sauce!!!) and I'd encourage all to know that you've a family of cluster heads here ready to offer support where we can. The support I've found here has been amazing.
Even to just read and resonate to know your not alone, is I imagine for a person reading these posts for the first time in search of a diagnosis, a very emotional thing in of itself.
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Esheel31
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Re: Emotional symptoms
Reply #16 - Jan 22nd, 2018 at 9:34pm
 
As I've said elsewhere, when I was being diagnosed my neuro asked me that if I was given a pistol during a "headache", would I consider using it. She said that everyone with CH would consider it and people without CH wouldn't.
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That’s why I’m glad I lost the argument with my wife about having a gun in the house.
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« Last Edit: Jan 22nd, 2018 at 9:37pm by Esheel31 »  
 
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dtruett
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Re: Emotional symptoms
Reply #17 - Jan 22nd, 2018 at 10:02pm
 
"That’s why I’m glad I lost the argument with my wife about having a gun in the house."

That's exactly why I never have.
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AussieBrian
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Re: Emotional symptoms
Reply #18 - Jan 23rd, 2018 at 11:49pm
 
(From the archives of ch.com)

        
Stalked


Staring at an empty page,

Pen in hand, mind all black.

The beast is prowling, hear it growling,

Circling ready for next attack.

Too scared to sleep, too weak to weep,

Cowering in fear of what’s ahead,

I know it can’t kill me, but still it can fill me

With terror unquenchable, bottomless dread.



No second chances, the monster advances,

The stalking’s  over, it’s time for the fight.

No ducking or weaving, just bucking and heaving,

The claws have sunk in and now comes the bite.

The lashing, the crashing, the gnashing of teeth

As my skull slowly crumples, bone torn apart.

Talons of fire take my eye entire,

It’s merciless, endless, cut blind to the heart.



How long has it been, a minute? A year?

Where am I? Is it over, or just a reprieve?

I know that it’s out there just watching, and waiting,

And gloating, and hoping I really believe

That it’s gone forever, in future it’ll never

Come back to attack, where-ever and when.

I’m beaten, defeated, the beast has feasted

Again, and again, and again and again.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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maz
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Re: Emotional symptoms
Reply #19 - Jan 25th, 2018 at 5:21am
 
Brilliant Brian.  So true for every one of us.
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