The return of the Beast

[Onglamesh]

Hello Cluster Busters! 

I think the last time I posted here may have been in March of this year... last public complaint of an attack was a little over a year ago (May or June of 2017 if I remember right).  I was beginning to think I might skip the cycles this year, but no such luck.  Beast is back and magic bullets are in short supply, so here I sit debating whether I should medicate or just curl up in a ball (as the Beast seems to know when I have no escape, and reserves the strongest onslaughts for those times).  The Beast is Murphy

Anyway, life goes on.  Attacks are certainly happening this week (this is NOT a drill people!), still mild at this point though... but it's been so long, I've finally blocked out the memories of the sensations and I feel unprepared for the levels of pain that are to come.  This particular attack seems to have passed its peak now, maybe a 3/10 (we'll know for sure when my new 10 is established at the climax of this cycle hehe).  Got through it without assistance, I guess it can be therapeutic to know that I am still capable of taking a cluster headache "like a man."  This attack was weak sauce though, I think just about anybody could brave that, but I know what it implies for me in the near future.

I've had a girlfriend for about 2 months now, my first time opening up to love in 8 years (for personal reasons not related to CH).  She's generally supportive of my situation, but there are times when I get the feeling she doesn't believe how much it hurts or my personal reasons for coping the way I do.  She has COPD, so when she told me she thinks I make these headaches happen by thinking about it and worrying that it's gonna happen, I told her that's akin to saying she can't breathe just because she THINKS she can't breathe.  I mean if I could turn it on with a thought, I'd be just as eager to turn it back off in the same way!  But 10 years of unmedicated agony taught me that there's not a thing my mind can do to stop that pain from happening, any more than a mind can regrow an amputated limb.  Sure, I can meditate and focus on calm deep breathing, that can help relax my mind and body to tolerate the pain a little bit better, but I'd be a spiritual guru if I could tell you how to breathe the Beast into submission.

The cycle has only just begun, I fear she won't understand when the frequency and intensity of hits inevitably graduates to the hopeless despair we all know too well.  I mean I'm accustomed to keeping that drivel to myself anyway, but it's disappointing that the person I should trust the most will likely never understand, I fear it may scare her away and then I'll be in pain AND lose a person I love.  Mostly I fear my lack of patience and tolerance for stress in this state... I've not always been the nicest person mid-cycle.  I hope I can maintain a healthy attitude this time, I think I put myself in danger by reacting to this condition so strongly in a world that doesn't understand it.

Does anybody else here have insight about managing personal relationships while being an insufferable, irritable, angry clusterhead?

[MoxieGirl]

Hi Onglamesh (great nick btw)

Would your partner be interested in creating an account on the forum and talking to others here? It might help her get a bigger picture perspective, and hear from other people that can collaborate your story. 

The pain levels of CH are pretty unbelievable and difficult to grasp for someone who hasn't had them. Heck, migraines are hard enough to understand if you don't suffer with them, and CH blow migraines out of the water. 

Also, try to get her involved in supporting you. I always hated how my best friend felt so helpless when I was having bad attacks. So I asked her that when an attack starts, to make sure I had a glass of cold water nearby, and an energy drink if I had one in the fridge, and a coffee if not. And then, during the attack to just give me space, as there's nothing anyone can do anyway. Then, as the attack fades, make sure my glass of water is refilled, as clusters really dehydrate me.

I hate it when people stand there asking 'is there anything I can do' at the precise moment I'm unable to turn thoughts into words. I want to scream 'cut my head off', but that's not very productive. So I found if I gave my friend standing instructions of what to do during an attack, she didn't feel helpless or at a loss of what to do. She was then suddenly involved, and was able to tell other people to just leave me be, that I'd be OK in a bit.

Wikipedia Article this is a good, brief summary of clusters, if she's up for reading it. 

MG

[spiny]

While it is beyond understanding the pain of CH if you don't experience them, it is possible to show her how some others cope. You Tube is full of videos of people having an attack. Perhaps show her a few of those. Or the Nat Geo section of Drugs Inc that covers Clusters. I know that is what made my husband understand a whole lot better than any words I had ever said.

I recently gave the hospital I use a really great demo on what works and what does not. I was having a scope with sedation, the normal procedure. I got hit while under. I was out, but my body was thrashing violently on the table. They had to administer full anesthetic to get the procedure done, They informed my husband that I would be at least an hour waking as they had to put me fully under. In 5 minutes he was notified that I was up. Yes, I woke with a hit They had been informed and had my gear ready when I sat up. "Here's your mask and your flow is set at 15lpm.' They were amazing and amazed too. They had never seen such a thing. And it was duly noted on my paperwork for future reference.

If you have something she could help with - wet washcloth, ice pack, caffeine -  ask for her help.

For me, listening or talking are out of the question. Any focus on words ramps the heck out of them. That was the hardest thing for us - the leave me alone part. He felt bad he could not help and that was hard all around. Now my O2 is in another room and I have the quiet I need to return to 'earth normal' before coping with people. That too may be hard for her. But I think it is pretty darn common. Not trying to hide, just can't handle the additional pain caused by human interaction. And those on the outside can't grasp why you are doing X to cope.

Moxie is right about getting her to possibly join the site. She would learn a lot and understand what you are going thru much better than she does now.

[jon019]

YEAH! ^^^^^^^^^^^ what the 2 fine folks above said....change only a few words and I would sign my name to either. 

Best

Jon