For most of us night time is a nightmare! (Understatement!)

I have started a bit of a habit when I am in pain during this time, which is rubbing my tongue at the back of my throat (and my goodness I make my throat raw! Ouch). Aside from CH I also have a constant migraine and suffer auras throughout the night so I am wondering if this is my body trying to deal with pain whilst sleeping (and when I wake up in pain!)

Anyone else have habits trying to deal with the pain?

PFDAN all x

I have the habit of pressing on my cheek and eye.  Sometimes I'll leave a bruise.

PF wishes,

Jeannie

I have to continually press on the back of my head and forehead while rocking or jiggling my legs, the more painful the more I have to jiggle them.  If I stop the pain gets more intense.  Thankfully the pain reached that point only a couple of times this cycle, the O2 (and when I couldn't get to the O2 soon enough the Imitrex) worked wonders keeping it at bay.

Hi Emma!
Welcome to the board! More info here than your Doc will ever need!
Just where is your pain?

Night time is expected, dreaded...
Daytime IS taking the piss!

Respect

Gary

Glassman wrote on Feb 23^rd, 2011 at 7:27pm:

or jiggling my legs, the more painful the more I have to jiggle them.

I thought this was only me & related it to having restless leg syndrome; my legs & feet feel like they are aching & need movement to get blood flow through them.
Do you happen to have RLS ?

Cheers
Barry

I jiggle my legs too!  I concentrate hard not to, and try to make myself completely still.  It's a struggle, sometimes I just jiggle my foot, but I try to control the jiggling everytime.  I don't have rls, but I do get anxiety and I believe it's an extention on that (anxiety of course kicks in with a h/a, and sometimes kicks in just dreading/worrying about getting a h/a). 

;DSometimes when hubby and I are in bed while I'm getting hit I'll start jiggling and Sam will say he feels like he's in a cheap motel with a vibrating bed lol.

I think one of side effects of a cluster attack is restlessness, or a need to move around. It might be a product of the pain, or it might be some other physiological response accompanying the attack. It's well known us clusterheads like to pace and punch walls, however. I do. The urge can be resisted and maybe ought to be, the wall punching thingie anyway. Blessings. lance

I lie on my side and pump my legs like I'm riding a bicycle! :)

Joe

I also pace and shake my leg during a hit.  Most of the time I end up on the bathroom floor because the tile is cold.

Sami

Crikey, you lot av made me feel better again!!!
With me, its rubbing my tongue on the front of the roof of my mouth. In the night, during episodes, especially, I grind my teeth. Recent episode, to the degree I ended up with teeth coming loose, and needing a guard.
Lance, you've hit the attack nail on the head, for me. Its the restlessness. Pacing the room, sitting rocking, shaking legs, banging my head on the pillow, kicking the floor, a couple of my most severe have even seen me punch walls.
The very worst habit of all though.......

HAVING THESE BLOODY HEADACHES, HABITUALLY TWICE A YEAR.

Now that's the one habit I'd really like to break!!

Wow, I am new here and can NOT believe what I am reading!  I also do some of these things.

During an attack I "ride a bicycle" with my legs and wiggle my feet to distract me from the pain.  I cannot stay still or I have to scream...and frankly that's just embarrassing. :-[ I also stand or lie on the bathroom floor for the coolness...or just because it's close to the lovely toilet.

Does anyone else get nausea and vomit during an attack???  I sometimes think it is an after effect from the Imitrex...any thoughts?

SpringThyme

Trex never made me barf, Fiorinal did. Although I do trex by injection, not oral. And while I get nauseous from the pain of anything over an 8, I don't barf anymore since the fiorinal days.

Joe

Okay, I need this trex injection.  I really hate the needle and have a few other injectables in my mixed bag of meds to choose from.  BUT to hear that you don't get nausea and DO get relief...is a relief.

I am going back to the doc and asking for the trex injection and O2. 

I don't have restless leg syndrome but during the attacks I leg jiggle as I said earlier.  I used to pace and rock but for some reason those doesn't "do it" for me any more.  Never felt like punching anything (once or twice when really pissed off (not in cycle at the time) I did punch a wall and learned that was just too painful - and I don't want to add to the pain of the CH!).  ;)

I've felt waves of nauseousness come and go during a hit but have never thrown up.  The Imitrex for me actually will take away the nauseous feelings as it takes away the pain.

I've felt a visceral nervous response deep in my gut and a sense of what I can only describe as panic breathing where my breath becomes shallow and rapid but that will also come and go through the attack.

By the way, I'm way too chicken to do the Imitrex injections.  I prefer the nasal spray which according to their studies works nearly as fast as the injections.  The bitter after taste isn't a problem as I've learned to associate that with pain relief is on the way.  :)

For clarification, I think I punched the wall to having something other than my head to be crying and screaming about :'(
I do the Sumatriptan injections and, as it goes Glassman, they're easy, n thats coming from a needle hater. Besides, when you're at KIP 9 or 10, you don't worry about a little needle scratch.
As for the pukin, I've never had it as a result of an injection. Like Guiseppi, just on the rare occassion due to the absolute agony.

Keep on Keeping on folks

Andrew

The 1st half of my 23 yrs of CH, I would pace, hit myself, bang my head, and once, went out the front door screaming in pain, 15 min later the Police showed up at my door.  :(

One day during a bad hit, I dropped to the floor in the hall and from that point on I realized that I would from now on, do my best to stay as calm as possible. It does help me.

PS: I have knocked holes in the wall and left bruises.

Kill the beast,   Don

" went out the front door screaming in pain, 15 min later the Police showed up at my door."

*chuckle*

I can identify with that one! Many years ago (mid 80's) in the days before O2 and Sumatriptan, I used to pace the floor, frequently ending up upside down hanging off furniture and stuff (weird I know, but it seemed to help) and banging the head on the floor hard enough to raise a hen's egg on my forehead!

One night, it got so bad (and this was winter time with a real hard frost) I figured that cold might help. No further ado, out I go into the night (3:15 a.m.) dressed ONLY in a dressing gown (robe for those in the US). 20 minutes later a car pulls up next  to me with a couple of inquisitive cops on board thinking I must be either drunk or mad! Took a bit of explaining - eventually they left after telling me to go home.

Oh, and the cold did help a bit! But God am I glad I don't have to face those K10 2+ hour sessions any more!!!!

PFDANTA, CB.

Clusterbuck,
Glad you weren't "taken in" by the police!  They might have thought you a "flasher!"  ;D 
Some say that cold helps them. For me, towels soaked in hot water wrapped around that side of my head helps the most, but only slightly, the pain keeps a comin' on like a freight train.

I know when a CH is coming on because my legs jiggle and I can't sit still. As soon as my CH hits I jump into the hotest shower I can stand and have the water directed just above my eye, have been known to stay like this for over an hour, it doesn't get rid of the CH but somehow helps.
Whatever works - its all good  :)

There's only one thing worse than a jiggly leg..
Two jiggly legs!

Gary

ClusterBuck wrote on Mar 1^st, 2011 at 5:23am:

frequently ending up upside down hanging off furniture and stuff (weird I know, but it seemed to help) and banging the head on the floor hard enough to raise a hen's egg on my forehead!

CB you didn't have a picture taken of this did you?

; )

Gary

No Batty, I didn't. Two reasons:

1. Photos were  the last thing on my mind during that particular cycle, and,

2. Way back then, we didn't have camera phones and all that gizmo stuff. Remember, I'm talking late 80's very early 90's when the nearest thing to a mobile phone was the size and weight of a house brick!

Things are fortunately somewhat better these days. I now have a G.P. who is familiar with (and takes an interest in) the condition. Consequently, no problem with Imigran jabs and we're currently in the process of establishing O2.

So, the days of the 3 hour K9/10 are over thankfully, I can now hit them in minutes - still not pleasant though to be woken 3 or 4 times a night - also means taking industrial levels of Imigran (which doc tacitly agrees won't really do any harm).

Hoping you're PF and keeping cheerful - good assist to NeuroHarpoon by the way - respect.

Cheers, CB

i pace, when im sitting i rock and shake my legs. i do LOVE the cold. for yall that dont know, im a chef, and when im at work i LOVE THE WALK-IN FREEZER!!! oh and ive been known to bang my head on a wall or two. but now im drinking CRAZY amounts of energy drinks.

Hi CB!
I am so glad you have knocked the legs from under the beast!
And really glad you have a Doc who is 'tuned in' too! (we should rent them out Ha Ha!)
I too, very rarely get the K10 when I am in cycle (fingers crossed, touch wood etc..)
I can remember a few where I just felt myself slipping away! I think it was mentally and physically!

Please keep us informed how you get on with the O2, it would be good feedback for the rest of us in the UK!

Yeah, being woken up at night, even though the pain is far,far less than it used to be, is the thing that has the most effect on my life currently with CH...especially if I am on Morning shift, just cannot catch up again for days! Luckily, I only do two mornings so can muddle through!

Thank you for that comment CB...it was very kind of you!
I just want to help the Newbies who come here at their wits end, anyway I can!

Strength in numbers

Respect

Gary

One of my strangest habits is banging the TV remote control against my temple. Not sure why, it just helps.

My other one is pressing my palm into right eye as hard as I can. Almost as if I'm hoping to push my eye through the socket in hopes of relieving the pressure.

My other one is pressing my palm into right eye as hard as I can. Almost as if I'm hoping to push my eye through the socket in hopes of relieving the pressure.

There were times I pushed so hard against my eyeball I'm suprised the damned thing didn't pop! :o

Joe

Guiseppi wrote on Mar 4^th, 2011 at 7:02pm:

My other one is pressing my palm into right eye as hard as I can. Almost as if I'm hoping to push my eye through the socket in hopes of relieving the pressure. There were times I pushed so hard against my eyeball I'm suprised the damned thing didn't pop! :o Joe

I have to be careful with that one now because my 2 year old little girl picked up on the habit.

I saw her pushing on her eye and when I told her not to touch her eyes she said "I have an ouchy eye, just like Daddy."  :(

I have to be careful with that one now because my 2 year old little girl picked up on the habit.

I saw her pushing on her eye and when I told her not to touch her eyes she said "I have an ouchy eye, just like Daddy

That sucks. :'(

joe

Guiseppi wrote on Mar 4^th, 2011 at 8:52pm:

I have to be careful with that one now because my 2 year old little girl picked up on the habit. I saw her pushing on her eye and when I told her not to touch her eyes she said "I have an ouchy eye, just like Daddy That sucks. :'( joe

Tell me about it.

Breaks my heart because the last thing you want as a parent is for your kids to see you as anything but strong.

Hopefully by the time she's old enough to be truly aware they'll be a cure.   ;D  ;D

I'm a walker, or was prior to O2.  I was usually able to hike around the neighborhood.  I could not sit still, and it seemed to help to get a little heavy breathing going.  The neighbors probably thought it was odd seeing a guys walking hard, cryin like a baby, blowing his nose, etc.  There were time that I was confined indoors, making lots of laps around the house (or motel room).

O2 is different.  I get to relax, focus on breathing.  If it gets bad before I get to the tank, I am usually rocking, but can settle down soon.

   U r not the onl one.  I've been known to drag a pillow into my bathroom.  Dr's say my pain gets sooo bad it triggers a naseua which when that cluster peaks can push me over the edge and will puke for hrs.  Have you tried the zofran 8mg odt tablets or phenegran suppositories when it gets to that point.  Also u may try meclazine or dramamine if im berderline sometimes they will sawy me back into living.

I'm a pacer, or if forced to stay still a leg jiggler.

I also repeatedly say things - "You can f*** off now" and similar. Obviously pain levels dictate whether one can speak or just make noises.

My attacks come around 8:30 in the morning so I think of the things I want to get on with and that the attack is preventing me from doing. I try to go into detail of what I would/will be doing.

If I am capable I have an activity on hand and visit it during dips in the pain just to show the beast he is wasting my time.

Apparently I'm a head banger...but luckily for me I haven't had a high level Kip since being on verapamil, etc. and the last time I did I was on a couch - so banging my head into the couch didn't do much damage!

I have to have a bit of a giggle though -

Kill the beast,   Don

Did anyone else get an imagine of the "Kill the Beast!" scene from Beauty and the Beast when reading this? I think it should be our theme song haha