Just wondering what everyone does, the minute you feel the beast starting...  I've often wondered, hoping something someone does special might help me or others..

I'll start (I am 3wks into a new cycle and am still 'experimenting) but:

* Start coffee (or warm up what is there)
* Crush 1-2 norcos and take
* Grab the icepack for neck
* Sit with O2, ice pack on neck chugging coffee
* Sit (as much as possible) and wait...  if too painful to wait out,
* Head to ER
I was given Zyprexa this time, don't think it works, I think the Norcos are kicking in.  I am stopping the zyprexa

Imitrex and most of the other abortives give me rebound : (

Hope someone finds something useful from these posts!

relief doesn't begin to describe the feeling when the attack is over

Oxygen.  Immediately.  If caught somewhere that I don't have access to the oxygen, then an Imitrex injection, followed by relocation to a place where I do have oxygen.

Dennis

Brew,

Norco is a pain reliever... I need to know that when I start a h/a that if it's not gone in 1/2 hr, I am at least getting a LITTLE relief...  I go to ER to get a shot of Demerol...   my main concern when the beast hits is getting relief from the PAIN!

Oxygen.  Press palm over eye.  Pace. 

If the tank is empty, quaff down a red bull while boiling water, add 3 scoops of Nescafe (not a fan of it but it is "instant" after-all), fill upstairs bathroom sink with hot water, dip the corner of a towel, apply to head, rub head, pace, hum a song, repeat as necessary.   

If away from home...I think I have no ritual other than finding a spot to be alone.

At the moment when I feel its subsiding down I remove hand from head and check if I can stay still or not.  If I can....then I try to go do something, anything, non-ritualistic.   

Im still finding it really difficult to do anything other than collapse onto my side and pant it out atm think a routine may help me though!

If at home:

• Go to where I've my oxygen all set up and waiting
• Hyperventilate for a few minutes
• Get back to what I was doing before

If at work or similar:

• Grab oxygen
• Head somewhere private
• Connect the mask / regulator
• Hyperventilate for a few minutes
• Pack up the mask / regulator
• Get back to what I was doing before

Oxygen is a life changer.

If at work:
• Wait a short time to see if it's going to get bad enough to use the Imitrex.
• Holding head with hand (Same side as CH) continuing to work until I can't deal with it anymore.
• Hoping I haven't waiting too long to use the Imitrex
• Head to Ladies room Use Imitrex Shot (if above 4kp and rising)
• Get back to work.
  
  
  If At Home:
• When I hit 4 kp I hit the O2 and stay on it until shortly after CH has gone.
• If O2 fails hit the Imitrex
• Get back to whatever I was doing before the CH hit.
  
  
  If Traveling:
• Pull over as soon as possible and hit the O2.
• If O2 fails hit the Imitrex
• On the Road again....

I have suffered from cluster headaches for 13 years.  During this time I have never taken any prescription medication.  I have found ways to beat these naturally and also ways to avoid them.  First and foremost, avoid alcohol and nocotine.  During my ch period, a half a beer will trigger one absolutely 100% of the time.  I refuse to let these bastards control my life so I drink anyway.  I know I will get one but I also know its 20 or so minutes of agony and then I'm usually good the rest of the night.  Thats my way of saying F**k you to the headaches I guess.  Cigarettes/chew will also (sometimes) trigger one.  Also, avoid sleeping/lying next to a fan or air conditioner.  For whatever reason, these also trigger them.  I think the nerve that causes these are very temperature sensitive.  That being said, you could sit in a perfect bubble and still get one but avoiding these situations (can) help. 

These headaches are extremely painful.  Thank god they are short lived and only show up once a year (in my case, the summer).  The following are ways that I have found to limit their duration (naturally) and in many cases stop it dead before it gets to to the point where your on your knees, dragging your head across the floor like a bloodhound following a scent trail.

The moment you feel one coming, you need to find a sweet spot.  What does that mean?  Because these monsters are associated with the nerves in your face (trigeminal nerve), you need to find a way to relax these nerves and quick. Lie down on your stomach, stretch your arms out in front or to the side and begin rolling and contorting your head in all sorts of positions. You will find a position, however odd it may be, where you will feel a sweet spot.  It won't be magic relief, but it WILL feel slightly better.  It is a position that gives the nerve slight relief.  Keep that spot for as long as it feels good and BREATHE DEEP.  Now let it out VERY slowly.  As you slowly exhale, imagine you are breathing the pain out of your mouth.  I cannot stress enough how important the visualization is.  As corny as it sounds, believe that you really are letting out the pain.  Call it meditation if you will, but it is very effective. If the sweet spot disappears rinse and repeat until you find another.  Get on your knees, lie on your back, but you will find a position and you will know it when you find it because you will feel a let up in the pain, however slight it may be.  Remember to breathe, that is very important because when we are in excrutiating pain, we don't breathe well.  I have successfully beat these this way for years.  Unfortunately, this doesn't always work. Usually if they get too severe or I wake up with a thumper it is too late for this.  This method works best if you catch it early.  The absolute best way to beat the extreme ones is to hop in the shower and set the water as hot as you can stand it.  The heat from the water will give the nerve something else to focus on and the effect can often times be immediate.  I cannot tell you how many nights I been standing (or sitting if too severe) in the shower at 3 in the morning.  I have tried massages, hot packs on my neck/head but this generally makes it worse, sometimes way worse.  Remember, even when in the shower, DEEP BREATHES.  The mind is a powerful tool.  As crazy as it sounds, I have even (imagined of course) drilling a hole in my head and letting the pain spew out as I let a deep breath out slowly. It works, I have gotten to the point where I don't have too many of the severe ones where your beating your head on the wall.  The worst ones are the ones that you get in a social setting where you cannot do these things.  Its difficult to explain why the veins on one side of your head are bulging, the eye on the same side is tearing/bloodshot and your nose is running like you just ate a jalapeno.  I pray for the day when they just don't come back but I fear that day will never arrive.  Until then, keep breathing and hang in there.

Thank you for the response.  Part of the reason I have given up on medicine is every time I gone to the doctor for these they automatically assume its allergies, its stress, migrains or some other bullsh*t reason.  No one seems to take cluster headaches seriously.  They want to put me on muscle relaxers, which don't do squat, or some nasal spray for allergies.  After a while I just gave up and learned how to deal with them myself.  In my twenties, the headaches used to be unbelievable severe.  They were horrible.  Thankfully mine have never been exceptionally long.  I think my longest was around 45 minuntes, maybe an hour.  Over the years they have seemed to lessen in severity but I contribute that to learning how to beat them before they get to that point because if I do nothing, they will turn into monsters.  The worst ones are the ones I wake up with because they are already bad by the time I wake up.  In those cases, its straight to the HOT shower, which dissolves them probably 75-80% of the time.  Very rarely does a super hot shower not cure it.  Thanks again for the reply.

Brew wrote on Aug 6^th, 2011 at 1:37pm:


Which is also why I chose to learn how to beat them on my own.  As bad as the pain can be, I don't want to sacrifice my liver or whatever by getting hooked on narcotics.  I do not judge because I know the eye popping pain but I don't think that it is the correct course.  Besides, I tried painkillers and they never did squat for me.  They just took too long to start working.

sbertram wrote on Aug 4^th, 2011 at 2:26am:


i do about everything thats been mentioned here. i like o2 and ice water in the shower. sometimes a hot shower works. sometimes an ice cold shower helps. i like a bucket of iced water and a dunked hand towel. the towel works well to put over your mouth so you dont wake up your family or neighbors. any kind of extreme cold to the face helps. a frozen bag of peas is good. if you hold it on there past the point of the stinging sensation your usually goes numb. i've rolled the window down in the dead of winter going down the road with my head in the wind and a toboggan on. 

i would be careful about  blowing your nose. with me it seems to pressurize my face and accelerates the pain under attack.

i've also been known to rip off my clothes like in "american werewolf in london" and run around out in the snow in my boxers. (yes i know. we're into august now. just sayin)

some times in a heavy part of a cycle nothing works

To Brew and anyone else who disagrees with painkillers:

I have dealt with the beast for 30 yrs..., while being a full time working wife/mom with whose now 23yr old baby was transplanted with a heart at age 5. 

I have been to every neuro in w. mich, tried every Rx and over the counter med you could possibly imagine..  I have been to the Diamond Headache Clinic and the Headache clinic at U/Mich... to no avail.  Let me tell you...  I have been stuck in A LOT of nasty places/situations with these things!

Right now I am trying the 123pfd... with crossed fingers. 

I am not privy to taking O2 to work, I have tried imitrex every which way only to have rebounds and be cut off.. I HAVE NO ABORT that works for me.  My dr is VERY stingy with and pain medication, I have been with him for 25 yrs and he knows I have clusters, but is still reluctant.  My theory is to get pain medication in my system, so I KNOW that if I don't get relief from the SUICIDAL PAIN, I can at least count on the painkillers taking some of it away. period.

My MAIN concern is relieving myself of the P A I N.  Maybe your pain is not as bad as mine, I don't know, but there is NO WAY I could sit 30-60 mins with this kind of pain; I would die.  If it means rushin my a** to ER for a shot to take pain away, so be it.  Let's face it, you can only become an addict if you have someone supplying it willing...  I do not.

I am frustrated and disappointed (first time since being here almost 10 yrs), that any of you would judge how we choose to get rid of the beast.  I am sitting here with 'him' shadowing in my eye, praying he doesn't come tonite..  thank God I can use the oxygen while at home...

So, please be gentle on here, really take time to read and really pay attention before dishing out judgements...  I for one am no newbie or fool to the beast...  pfnad to all