What's the one thing you hate most about having CH?  The pain?  The people who try to offer "cures" or say they understand because they had one once?

Mine:  Days like today, when I've had so many hits I'm exhausted but it hurts too much to lie down.

that sucks. I've never had more then 2 hits in one day before. I feel lucky i guess. I don't even tell people i get headaches anymore. I just tell em I been sick in bed. They dont understand. I had a fool tell me yesterday that bto get rid of my headaches to roll my eyes back and forth and up and down. LOL I was like "Really, I can't wait to try that." You just saved my life!!!  Dumbass.  ;D   hope you feel better soon ;)

I don't think I've ever had more than 2 hits in a day, and I know 1 is enough for everybody.  I hope you find some relief soon.  Before I was actually diagnosed with cluster headache and nothing would kill the pain, I always hated that hopeless feeling.  I knew when to expect another headache and knew there was nothing I could do about it, and I began to feel like maybe I was going crazy.  My family doctor once told me Cymbalta should be helping my headaches.  I just smiled and thought, "Yeah, doing a great job," and knew what he was hinting at. 

Wish there were only one thing.

The "discomfort", the timing, the rapidity of onset, the sheer numbers per cycle, the length of cycle, the impotency of pain medication, etc.

that they exist! :-/

The state of mind it puts me in while constantly looking over my shoulder to find out when my number has come up on the dance card.

It sure can get in the way of living a "normal" life.

The pain is secondary to this.

The time lost I can never get back.

Joe

i hate driving through chicago in a semi truck while i get repeat attacks. talk about being scared. and i like chicago

-johnny- wrote on Jun 6^th, 2010 at 10:47am:

i hate driving through chicago in a semi truck while i get repeat attacks. talk about being scared. and i like chicago

So you'll be cheering for the Blackhawks tonight then, right? ;D

Katherinecm wrote on Jun 6^th, 2010 at 2:11am:

What's the one thing you hate most about having CH?  The pain?  The people who try to offer "cures" or say they understand because they had one once? Mine:  Days like today, when I've had so many hits I'm exhausted but it hurts too much to lie down.

Katherinecm I believe it would be all of the above.  I just hopefully finished a cycle that lasted about three days. Today pain free (fingers crossed)!
Hope you start feeling better soon.

neetnut wrote on Jun 6^th, 2010 at 1:31pm:

Katherinecm I believe it would be all of the above.  I just hopefully finished a cycle that lasted about three days. Today pain free (fingers crossed)! Hope you start feeling better soon.

A cycle that lasted three days?

Dealing with co-workers, friends, and even family who "get tired of hearing about it all the time."  On top of the excruciating pain, I lose patience with these folks (but I have to keep my job!).

Dealing with co-workers, friends, and even family who "get tired of hearing about it all the time."  On top of the excruciating pain, I lose patience with these folks (but I have to keep my job!).

Well every thing really but especially my loss of patience with everyone and that damned annoying twitchy eye thing , whats that all about ???

Nigel

that although it is tearing apart inside,body and peace of mind,it leaves me to appear just normal outside.

Oh yes some thing I really hate about CH that I forgot to mention earlier is coming to this board and finding a post from some thingy trying to tell us how there most utterly ridiculous idea can "cure" us  >:(

Nigel

edited to add :" some thingy " is not what I wrote but the board obviously took exception to what I did write so may be it should have read ... some silly person.

I think I hate 'most everything about it.  On the other hand, there's nothing better than the end of a cycle.  It's like summer vacation has arrived when you're ten years old. 


Headache Boy uk wrote on Jun 6^th, 2010 at 7:56pm:

Oh yes some thing I really hate about CH that I forgot to mention earlier is coming to this board and finding a post from some thingy trying to tell us how there most utterly ridiculous idea can "cure" us  >:( Nigel edited to add :" some thingy " is not what I wrote but the board obviously took exception to what I did write so may be it should have read ... some silly person.

LOL, Nigel.  This isn't the first time that the differing British and American definitions for...um...thingy have caused someone's post to come a cropper, due to the board censor software.   ;D

Best,

George   

For me, I hate everything about it. It's become a life consuming problem. I'm still trying to find treatment to rid this beast in my head. I will prevail!
Donna Mae

Hmmm....can't decide between the pain or sleep deprivation?
Hang in there--I get multiple hits too when in cycle--at night mostly.  It'll wear you down.  Hope you get painfree soon.

How about the other question?  What is your favorite thing about the CH?  Mine is the feeling as I am bending over after 40-50 minutes, digging my fingers into my skull, finding the sweet spot that helps with the pain and then I feel the first release of the pain.......pain back on.......release again and then I know it is on its way out for now.  Then that sweet feeling of exhaustion but no pain as I lie on the floor thanking the head-gods that my pain is gone once again for the day.

Now that feels good! :-* 

--Shaggy

ps, I am not one of those glass is half full or whatever type of guys, I'm just sayin'.

Oh Shaggy........I've tried to explain to people that until they've felt the end of a cluster attack...they will never truly appreciate how good....GOOD feels! ;D

Joe

True indeed good sir, true indeed! 8-)

--Shaggy

yeah,  how good GOOD feels really resonates with me.  even when I've been getting nearly nonstop (45 minutes on/45 minutes off) hits for...  what am I at?  10 days now?  I've lost count.  and even though I'm utterly exhausted in between, it feels SO GOOD to NOT be in pain!

the other day the new guy I've been flirting with said I was one of the happiest people he knew (of course he's only spoken to me once when I was getting a hit and we got off the phone quickly).  my only response was- when I'm not in pain, what is there to not be happy about?  in comparison everything else is cake.

I do wish I had someone to take a roadtrip with me though.  If I felt better I'd take one on my own, but right now I'm just not capable except when I'm on pain medicine, and when I am I don't want to drive.

Good also is the first virtually PF day in the past 2 years that I have had in the last 24 hours; without any meds!!!!

Went through a chronic bust with Psilocybin and although the detox period and the periods between dosages were ROUGH to say the least, I am now slowly beginning to remember what pain free feels like. Early days but I am feeling better than I have in a long, long time. It feels GOOD!

In your situation I would read up on alts. Busting a chronic condition is seemingly a lot tougher than an episodic one and over the past 4 weeks I have often thought of giving up. Notwithstanding, there is no doubt in my mind that the shamanic way is working in the end, if you see it through.

The feeling of a lack of control over my life; that my life is not my own during cycle. The result is a disconnection from the things in my life that are important to me when I'm in cycle.

That's some great news Neuro! :) Here's to seeing you as yet another buster success story...and soon.

Joe

Brew wrote on Jun 6^th, 2010 at 12:22pm:

So you'll be cheering for the Blackhawks tonight then, right? ;D

Nooooooooooooooooooooo!!!!!!!!!!

GO FLYERS

I read a statistic a couple of years ago that only 12% of people ever get rid of ch's for good. I don't know how accurate it is but I almost cried. Maybe I did...not sure.

How it can completely take me out in any situation at any time. Luckily I've learned enough to limit this, but it still happens.

Don

My headaches can disappear for a few days making me think I've won. Then...."We're ba-ack!" And this time they are brutal - peaks of kip 8-10 with troughs (the time between) at about kip 2-4. I get hammered once an hour for about 40 minutes for at least 12 hours at a time...

But when they cycle ends, I quickly forget the pain and start making plans again...optimism returns.

Mostly I hate it when my wife just sits there helplessly during a heavy attack, fighting not to cry, fighting to be strong. Since I have only had 4 cycles so far it is pretty new and still very scary for her.

She knows not to bother me with "what can I do" questions, but that doesn't make it easier for her. She usually gets a napkin soaked with cold water to put on my face to help with the temperature increase and so she feels like she is doing something. That means a lot to her.

It is frustrating to know what impact this has on my wife, during and after a cycle.
I read here on the forum as a reply to one of my posts, and it's something I talked with my wife about as well... CH is a pretty selfish thing because. It has an impact on how we feel, on how we act and sometimes we can't even control it.
It wears us down but we somehow need to find a way to enjoy the lesser things in life.

It's just not easy, though we manage.

Where does one begin, the friends and family advice, the constant interruptions day and night as the attacks come in waves 8 to 10 times throughout, the horrific pain, the fear of not getting to your oxygen in time, the interference in your job, fear of side effects from the meds, and on and on.

But as others have said the feeling as an attacks leaves and the appreciation of being out of cycle for those of us that are thankfully episodic are two of the sweetest feelings anyone will ever experience.

David

I hate the fact that no one understands it because it's "just a headache" (even though it's a headache for 5 months at a time), that it's always at night when you need to sleep and no one can actually see you in pain. I love the fact that Topamax has made me lose 15 pounds in the last 2 months of taking it since food has lost all apeal to me, though I can't wait to go off Topamax, because I'm sick of not wanting to eat.

Guiseppi wrote on Jun 6^th, 2010 at 9:27am:

The time lost I can never get back. Joe

This is it for me too.

Melissa wrote on Jun 8^th, 2010 at 2:19pm:

Guiseppi wrote on Jun 6th, 2010 at 9:27am: The time lost I can never get back. Joe This is it for me too.

during my grandmothers 80th birthday day party i sat in my van out in the parking lot screaming.

one of the many things i missed

The fact I actually consider suicide when I'm having one.

The dread of the next one.

Good one Jeannie, that dread every time you feel a trwinge or a shadow,  is it coming and if so how bad.
:(

I will always say that it's the pain that it causes others.

:'(torturous days/nights,  :'(helplessness,  :'(loss of time/jobs/relationships/money,  :'(embarrassment,  :'(fearful thoughts

definitely the pain for me, fortunately, not many ppl have seen me actually being attacked by the beast, but the thing that sticks in my mind the most when someone did see it, is the fear in their face when I was rolling around in agony and there was nothing they could do. That was pre-diagnosis, so even I didnt know what was happening to me, and thats scary.

I have to say the part i hate most is lost time with my four year old daughter. She doesn't really have the capacity to understand whats going on just that mommy is in pain and i can't play with her. and the fact she looks so sad and helpless when i'm sitting in a corner rocking back and forth begging god to take the pain away.......... :'(

Guiseppi wrote on Jun 6^th, 2010 at 9:27am:

The time lost I can never get back. Joe

You said it Joe ... I have lost way too many years and time keeps ticking away!!! 

the way they and i make other people feel. the watching of the clock and waiting for the next one.

The painful look in my families eyes when they see me with one. 

The pain CH causes!

The hours of my life it's wasted.

The looks I get from people at work and lack of understanding of some.

The disruptions it causes in my life, house, with family and even my dog, and yes, I did say my dog.  There have been a few times when I have been rocking back and forth with the pain, sitting on the bathroom floor with my Dad handing me refreshed cloths & my dog standing over my legs protectively emitting a low growl, like he's trying to protect me from an unseen evil. 

My dog has gone as far as to take out his aggression towards the beast by shredding the tissues I've gone through after a particularly bad CH hit.  He's done this a couple of times and only selects the tissues I've used during a CH hit and nothing else that is in the garbage.  Needless to say I empty the garbage can right away after a bad one now.   ::)

CH affects all, even our pets.

The pain is horrible. When it's unremitting day after day, and year after year, it's evil. When it destroys the best years of a young man's life, the years when he becomes educated, finds a mate and his place in the world. When it makes him wish he were dead rather than alive during those best years. Seeing him talking with friends on the rare occasions when his pain subsides; friends who've done all those "normal" things, them talking about their young children and their careers while he responds with tales from his football days in high school when he "scored" with all those girls. Knowing that "his" best years of his life were back then and having to see the odd smirks on his friends faces. That's from a father's point of view. I hate it that I have some idea of what it's like for him.

That it interferes with my beer drinking, all the time! DAMNIT MAN!