To be Agitated, or not Agitated, that is the Q..

[MoxieGirl]

No, I know it's not an option, to be agitated during an attack. But makes for a catchy title.

In Anthony's thread, 'hello all', the subject came up about how many people have a slightly different experience with clusters, as mentioned by Ting. I didn't want to take over Anthony's thread, but have a question about it.

One of the 'typical' symptoms is agitation. And my GP asked me this morning, when talking to her about O₂, if I get agitated during attacks. No, I don't - but I told her yes because it IS a typical cluster headache indicator, and I needed her to do the paperwork for O₂.

I used to. When they started a few years ago, I couldn't sit still. Had to get up and walk around, pace, bang my head, shake my body. But recently I don't so much. I can. It's not like a migraine where movement hurts - and I think that is one of the things she was asking about this morning.

I tend to curl up in a ball, remain pretty still, and just focus on my breathing and the pain. But, perhaps that is just me and how I deal with pain. I'm coming at this with a different approach to pain than most people, and have different coping techniques.

So, I have said all that to ask: do other people not feel the need to be agitated, to pace, to climb the walls as it were, during an attack?

Renée

[Ricardo]

I have experienced both, at different times.  There are times where I can not sit still, and there are times when I curl up into a ball and whimper like a puppy (Although if it gets bad enough I usually end up thrashing around a bit eventually)  I encourage you to give your Doc all your symptoms just like they happen, I know you want the O2, but it's also very important that you get a correct diagnosis AND it's very important that you educate your doctor on the varieties of symptoms that can accompany CH.  I've heard people on here trying to tell people that they don't have clusters because their headaches last too long, or because they don't thrash around enough when getting hit...But I hope people can remember that we still really don't know what's going on with this disorder, and it seems like the supposedly extremely rare disorder of cluster headache is becoming more and more prevalent--Not because more people are actually getting them, but because more doctors are admitting that clusters may have more faces than the typical wake you up in the middle of the night for an hour thing.  Just for the record--my clusters (that have been recently diagnosed as clusters by a Neurologist who has passed the only certification program in the country for headache disorders) can last ALL day (and night if I don't do anything about them), I do not always thrash around, I rarely get hit in the middle of the night, and O2 does not work for me. 

Good luck on getting the O2, I bet it will happen.  (and if it doesn't, we are all here to throw out all sorts of colorful insults to share with your doc )

-Ricardo

[spiny]

Hi Renee,

Depends for me. Sometimes with high Kip which I would call a 10, I am very agitated.

I have bent my headboard grabbing a couple of the metal rods and pulled one while pushing the other. Not bad for a shrimp.

Others, I am frantically lightly touching my face with a cool washcloth to find the sweet spot of pain relief while the rest of me is in a frenzy waiting for the tub to get enough scalding water in for me to get in and rock.

Then, you have the sit with the O2 and gently rock on the floor times too.

This go around, my sinuses are so clogged on my CH side that I do not get any runny nose or eye just before what is going to be a real hit like I used to. I really miss that early warning system. > It always told me when to leave the common room and head into private space.

Now, I have to wait and see if the burn is really going to go all out or just flicker. Or I can lie down, that will tell me within about 5 minutes if I need to head to the tank, that 'other love of my life'!

My dragon has morphed over time. Perhaps most do. We will see when you get more responses. Looking forward to reading them.

spiny

who feels like chit today >

[MoxieGirl]

Hi Ricardo,

Thanks for the info, and advice.

Like you, I rarely get clusters in the night, although that is on the increase. Also, mine rarely last 30 minutes (although they are getting longer), they are usually under 10 minutes. And I don't get a droopy eye or face. But, runny nose and tear duct activated, yes.

Actually, I like your wording, 'trash about', because if I have a bad one, I will do that. I may start out being all focused, but if it gets really bad, I will roll around and trash about on the bed quite a bit. Didn't think of it that way.

Thanks

[Brew]

One of the things most of us learn over time is that hyper-oxygenating our blood, in whatever form that takes (either breathing pure O2 or merely hyperventilating room air), is one of the keys to a quick abort.

Might I be so bold as to suggest that you try to consciously NOT curl up in a ball when being attacked? It doesn't make for good breathing technique as you are physically reducing your lung capacity. Try to either stand or sit upright in a rigid chair.

[alleyoop]

I really miss that early warning system.It always told me when to leave the common room and head into private space.

Now, I have to wait and see if the burn is really going to go all out or just flicker. Or I can lie down, that will tell me within about 5 minutes if I need to head to the tank, that 'other love of my life'!

I think you'll find that 02 works at its best if you hit it at the very first sign of CH.  Don't wait to see if it gets bad. 

I usually hit it when I feel a slight pressure on my left side.  I am so attuned to it that I can pick it up almost every time.  Then the 02 usually knocks it out within 5 minutes, but everyone is different, and there are times when the oxygen doesn't work at all.  Thankfully, those times are few and far between.

[Bejeeber]

I know there are those CH'ers (and probably doctors) who think that if you're not "doin' the dance", you must not even have CH, but from comments I've seen and my own experience I believe some of us, due to personality type or whatever, won't act real agitated, at least not until the really high kips kick in. In my first years with CH I actually used to lie down during attacks (albeit with some writhing), and I've seen others report the same.

Heck, sometimes there may even be a cultural component to this (or just "the way you were raised"). At one point I tried finding books on how to cope with pain, and one of them pointed out the cultural differences in responses to the pain of childbirth, contrasting your typical Japanese maternity ward where you can practically hear a pin drop with a typical Italian maternity ward replete with non stop deafening, blood curling, top o' the lungs shrieking and screaming.