Fear of coping with the next hit is a strange thing. Sometimes we can get hit, deal with it, pick ourselves up and carry on and other times we just can't shake that feeling of doom, despair, fatigue.
This thing sucks. It's awful, unbearable, indescribable pain and the worst of it is that it's so hard to make others understand. It is so far beyond anything else that we're at a loss to describe it ourselves. Not just the actual pain but the impact on us.
We do retreat into ourselves. We want to shut ourselves off from everyone. Make ourselves unnoticable, unseen. Every day issues become unbearable as all that is "real" is the pain and the fear of it.
It consumes us, it's all we are. We become less than human. we are just the sum of our pain.
It's a black hole and a spiral into insanity if we can't pull ourselves out of it.

We can't stop feeling the above but we can fight it. We can learn to recognise when it's getting to much to cope with and when we need to take steps to pull ourselves out. We can learn how to tell other's, teach them to spot our warning signs and help us. Teach them to understand it isn't "them" and it isn't "us - it just IS.

The most important thing we need to cope is knowing we can fight it. Having the meds to ease the pain. I know when you don't have a proper diagnosis that meds are a big problem. I remember only too well how it was before I was diagnosed when I wanted to throw myself out of the car I was in so much pain. I used to stick my face next to the air con just because the cold seemed to help. Try ice packs on the side of your head it hurts on and the back of your neck. Try heat, some people find hot showers right onto their face eases it.
Red Bull is my emergency godsend. Chug a whole can as fast as you can as early into a hit as you can do it. If you leave it too long it doesn't work. Same for coffee. Strong coffee and lots of it helps. Caffeine is your best friend when you're a clusterhead.

I know meds aren't the primary reason for this thread but knowing you can abort an attack goes a long way to helping you cope. Once you KNOW you can beat it you can start to live with it.

You have to tell your friends and family. You have to explain to them that this isn't a "headache". It's a neurological condition in which the  blood vessels on the affected side of your head dilate and crush the nerves around them causing excruciating pain. Tell them the pain is considered by neurologists to be the worst pain there is. Comparable to amputation without anaesthetic. It's not being dramatic, it's trying to get them to understand that it is UNBEARABLE.

Tell them the pain literally drives you crazy. That you are unable to speak or be cognitive during an attack.
Explain that the pain is so bad you cannot be still, that you will thrash about, rock and cry. That your eye can close up, your nose runs and you feel like an animal. Tell them you lose all sense of time and that if they don't leave you alone to cope you WILL take it out on them. You don't want to but you haven't any control over it as you lose the ability to be rational. You hurt so much you are not able to be responsible for your actions. You don't want to take it out on them and it hurts you knowing that you will so you want them to leave you alone to cope until it's over.

I cope by having the best network of friends a clusterhead could have. The people here have picked me up when I couldn't get up again by myself more times than enough. I cope because I'm so damn stubborn I will not let this win. I only have one life and I am going to live it. If I have to have cluster's along for the ride so be it but it's ME picking the route for my road trip! It's easy to be brave right this minute. I'm not in pain. I'm a "zero" on the Kip scale. Life is beautiful. I cope by counting the time I'm not in pain rather than the time I am.

When I was first getting hit I used to get my attacks regularly at 11am and 5pm and they would each last two hours (unmedicated before diagnosis) It sounds so silly now but I used to plan my day so I got stuff done before my headache was due. I know people have said since that they thought I'd gone completely nuts when I used to say things like I have to do X before 10:30 or I'll have my headache and not be able to! They understand now - I have wonderful friends - but they did find it bizarre.

Sometimes horrible things will happen. Not everyone will understand. I had a traffic warden give me a ticked when I was sat in the car getting hit with an O2 mask over my face. The cruelty of that still hurts me today, about four years later. It upset me horribly that he could be so callous. I came here and posted about it and got the love and compassion and understanding I needed here.

People who don't have CH find it hard to understand. Unless someone has seen you getting hit they really don't have a clue at all and even then, they can understand the horror of it by seeing us, they can feel helpless but they can't KNOW the pain. They have pain, it's just completely different. It's the heartache of seeing people they love hurting and being helpless themselves.

The best way to learn to cope is to talk.
Talk to us. Talk to your friends and family. Tell them you're scared. Tell us you need help. If your friends will come here and ask us for information we will give it to them delightedly. It's not an overnight thing. It's a learning curve. But you do have this much, you are not alone and you will NEVER be alone with CH again. Be it the middle of the night or a sunny afternoon, if you need us, we are here. The lights never go out in Clusterville.

You have my number, use it. For anyone else, if you want to talk ANYTIME send me your number via a pm and I will call you. I've been here to learn. I've been here to get advice and care and love. I'm still here for all that but I'm here to give back now too. One day, you'll be able to do the same and you'll feel as strongly about it as I do now.

As Kip used to say and I cannot improve on..

Zero's for all


Helen

That's a wonderful post, Helen.  Really thoughtful and useful for people new to this whole ouchy buisness.  Thanks There's loads of things in there for those of us who are learning to cope- Thanks lots and lot!

Thanks for the link too about pain vs suffering.  Sound like something worth doing some amazon purchasing around.

Emily

Quote:

Hellen your the Greatest!

   how do we cope?    hmmm DUNNO!   We just do what we have to do to survive eh!
   I know It would be  almost unbearable without all you here at CH.com..  AND my husband....who has got to be sick of all this by now, and is nothing but understanding, and supportive. 
   Also...I just keep thinking ....IT could be worse!  I am a lucky one...It could be worse. 
   I am thankful I don't have MS
   Thankful I don't have a brain cancer
   Thankful It is not fatal.
  Thankfully there are meds for this.
  THANKFULL FOR O2 

Don't get me wrong...I shed my share of tears, but with a little help from my cluster head friends here,  I get by.  and I feel oh soooo thankful.

   One particular phrase sticks in my mind (from Joni---thanks Joni)     THE SUN WILL COME UP TOMORROW

       And thanks to all here!     lorac

How does one cope?

That is an excellent question that has no one answer.  I wish I could just say do this and that and everything works out and all is rosy.  However, it doesn't work that way.  As much I as would like to give a straight answer to the question I cannot.  I will however give my answer that works for me.

First of all, as a Christian I know that nothing comes into my life that God does not have a purpose for.  He owes me no explaination, although I believe that one day I will receive it.  My tagline from the book of Job explains part of it.  Each of us goes through difficulties in life, they are just different.  Our pain level may be the highest out there, I don't know as I have not tried all of them. I would not want to try 3rd degree burns.  I know what debridement does to one, and want no part of it.  Pain, then  is relative.  It is what it is, and must be accepted as such before one can effectively cope with it.

Secondly, as I look around me I see numerous persons that I would not trade places with for anything.  Yes my pain is severe, but I will not die from it.  My wife for one will die from her MS if the Lupus doesn't kill her first or one of the other maladies she suffers from due to Auto Immune issues.  She keeps on going and going and going.  A lady I know from church has had MS for years and suffers from sciatica all the time, but when you see her struggle into church with her walker (she won't use her wheelchair except under extreme conditions because she "isn't a cripple" and will walk as long as she can) ALWAYS has a big smile on her face and asks about how YOU are doing.  I could count others, some of them on this board that have it much worse than I.  What then do I really have to complain about?

I could go on, but this is long enough.  Essentially it boils down to this, you either cope or you don't, and not coping is not acceptable. 

Jerry

Coping. Such an interesting question and discussion. As an atheist, I can't take comfort in some grander plan that involves me suffering so. I know it's some combination of genetics and environment (seems taking up smoking at an early age wasn't a good idea) I have a great neuro, a supportive wife (lost the last wife to divorce due to these) and a stubborn disposition.
I think my experience of about 12 years ago made the difference in my attitude. My moron of a neuro then prescribed an MAOI to go with an SSRI and I got Serotonin Syndrome and survived an 8 day coma. When I came out I had clinical depression for two years. At the end of negotiating a malpractice suit and getting an offer that under California's MICRA law (don't get me started on the people who say we need to reform that!) even the administrative judge said was too low, my wife told me she was leaving me for a guy at work and that if I went to trial she wouldn't testify on my behalf. She left the kids with me to go play with her new "boy toy" and I burned through the little that was left over making house payments on one teacher's salary in a year. Took about 50 Lithium one day, but that didn't kill me. Finally came out with a new neuro, a new partner, later to be my wife, and the realization that if I could make it through that experience, nothing would ever be worse.
One night, years back, in the middle of a particularly bad batch of these monsters, I did get suicidal, and posted here the question, "Why not suicide?" Got about 150 replies from the kindest, most generous people in the world. They talked me down and a couple even sent me some Imitrex.
The bottom line with me is that when I'm cluster-free, for whatever amount of time (in a cycle now after 18 months) I never think that it's over. I appreciate each day, knowing the beast will return. When I'm in a cycle, I just take one day and one headache at a time, knowing it will be over in it's 45 minutes or so. Once in awhile I get depressed, but get over it quickly. Stubbornness and persistence. That's the only way I know.      

dtruett - you are not alone in getting depressed from time to time. WE ALL DO.  We're only human, we're not invincible and anyone who says they never feel the weight of all this is not being honest.

I think sometimes people feel the best way to help new sufferers is to give the impression we manage and all is fine. Kind of like the way parents do with little kids. We (parents) try so hard not to show fear in front of our kids - and thats not a bad thing.

With new ch'ers though its different. They feel low enough already. They don't need to feel like it's just them that can't cope. They don't need to feel like failures.. they need to see the rest of us feel exactly the same and that the only difference between "us" and "them" is that we've learned how to TRY to fight it. None of us are 100% successful. We all get bad times and thats where, as a community, we pull each other through.

NEVER UNDERESTIMATE THE POWER OF CLUSTERVILLE!!

It's your best "weapon" in this war.

I'm so glad to read your story and hear how things have improved. I hope we see more of you, it would be nice to get to know you better

Helen

first, I want to apologize for not being as active on the board as I once was.

I am coping with my combo plate of ch, ph, & possible sunct, etc, with basic menu of verap & indomethacin 4xdaily, O2, ice, energy drinksm & this year neuro has added botox treatment which has helped a lot, although people who desire total pf may not think it works.

It has gotten to the point where I found an old beach cap with the gel band, which I keep in the freezer, and I use it and a gel pack so I can drive. I was stopped several weeks ago for swerving while thrashing about & asked if I was under the influence or had a medical emergency. (It was not an emergency. The light change had justg shifted my first workday hit to 7:24 & by 7:40 I had full raging hits at different stages on both sides.)

Starting the next day, I simply left for work earlier, & emailed the Sheriff's Dept & asked them to thank the deputy for alerting me to the problem, explained that the headache occurs daily at approximately the same time & had shifted, & thanks to the deputy I was now safely at work when it hit. They said they would tell him.

Family always forgets that I even have headaches. Some take it right in stride & others are very sensitive & take it personally.

One can only do their best.

Charlotte

Amen, MJ.

MJ- Your thoughts remind me of the Serenity Prayer...

The Serenity Prayer      

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

        --Reinhold Niebuhr

strangely the only ones for me who don't understand are called DOCTORS. my friends and husband (when I was married) were pretty good. it was hard to go to a job loaded on tylenol and sitting there and clutching my head. i only got 6 sick days a year and this CH thing came much more than that.

I was so desperate for pain relief that I even tried Sportscreme (a non-aspirin type of aspercreme) around my eye socket. It kind of helped a little! On bad days I took 9 500 mg aspirin a day for 2 months straight. then switched to aleve, then excedrin, now tylenol. primary doc says no more than 4000 mg tylenol a day. something about liver.
Sometimes I feel like a walking pharmacy!

mostly I sat in a dark room, cried, screamed and yes cussed, and rocked back and forth with my hands on my head. Glad no one could see me.

I try not to worry about the "next" ch. like others here you will just have to enjoy the time without them and pray they go away. eat right, watch lots of funny movies,etc. I bought a clean joke book from the religious store. I also read inspirational stories from Guidposts and Reader's Digest.

Hope that helps
Michelle
(have had these horrible headaches for 22 years)

Thank you for this thread .I have had such a bad time lately and have felt so defeated by the pain . Reading all your posts has made me stop feeling sorry for myself and Im determined this awful thing will not win !