Hi everyone.  Thanks for all the well wishes.  They seem to have gotten worse since I wrote that.  I ended up in the ER that day.  Only thing the doc would rx was some tylenol, caffeine, barbituate cocktail type thing.  I know it's not what I really need but right now the free ER doc is all I can afford and I'll take anything to dull the pain, and at least the pills do get rid of it.  I've had probably 6 since that post and the damn nurse at the ER insisted on putting the IV on the underside of my vein so I have a nice fat bruise.  Vampires, I tell ya what LoL.  I was reading online and found a few things that said with episodic sufferers the pain tends to get worse than go downhill from there until the session is gone.  I'm praying I'm at or close to that point.  
Most of the time right now I wish I could be locked in a dark, quiet padded room LoL.  Ok ok so I want the computer in the corner I can turn on once in a while.  The attacks do take a break here and there.  ;D  
My youngest will be three in March and it's sad.  She's gotten so used to my headaches already.  I can hear her trying to be quiet talking to grandma about how Mommy has a headache and says "just leave me 'lone".
I'm utterly exhausted but afraid to go to lay down.  Every time I start to sleep good I wake up with another attack.  
So far I haven't found anything obvious that triggers them either.
I've tried the circulation technique and haven't had any luck.  But keeping my feet on nice cold bathroom tiles has helped slightly.    If nothing else it seems like it keeps it at bay for an extra for an extra four of five minutes.  And ya know, any extra time before writhing on the floor in agony (my latest phrase) is good time.  

Ok well now that I've rambled for ages I'll get off my soapbox LoL.
Always bored at yahoo if anyone wants to chat :)

Replying to myself.  Sorry for lack of punctuation.  I just read it again and WHOA it's bad LoL.

Hi PJ... (I don't like to type so I always shorten words. LOL).

Have you read the Medicines and Treatments section of the board yet?  You might print some things out to have ready for the next time (I hope there isn't one) you have to go to the ER.  Maybe the docs will treat you with what a cluster sufferer REALLY needs.  It's always safer to go "natural" with o2.  At least give it a try, with the proper equipment.

How long do the breaks last?  Are you episodic?  Have you tried cold on your head instead of your feet?

Hope you're feeling better now.

8-)

wrote on Feb 1^st, 2009 at 9:15am:

Hi PJ... (I don't like to type so I always shorten words. LOL). Have you read the Medicines and Treatments section of the board yet?  You might print some things out to have ready for the next time (I hope there isn't one) you have to go to the ER. Great minds LoL.  I had a friend print me out the whole section and bring it to me just Friday.   Maybe the docs will treat you with what a cluster sufferer REALLY needs.  It's always safer to go "natural" with o2.  At least give it a try, with the proper equipment. How long do the breaks last? Between headaches or between sessions?  Between headaches right now it seems to be 6-36 hours but between sessions it's 2-4 years. Are you episodic? Yep Have you tried cold on your head instead of your feet? I've tried cold everywhere.  I've tried the hands and feet, my head, my neck, my face, taken cold showers (hot showers too LOL).  The hands and feet seem to be the only thing that I even notice a dif with. Hope you're feeling better now. I just got over another attack about an hour ago.  Dumb me I haven't been documenting them all.  But I am now.  This one lasted almost two hours.  Long for me.   8-)

  If at all possible try and get the ER to give you O2@15 LPM. It works for around 70% of us right out of the gate. Beats the hell out of them poking holes in yer hide to no good purpose.
[smiley=smokin.gif]

Kirk wrote on Feb 2^nd, 2009 at 4:51am:

If at all possible try and get the ER to give you O2@15 LPM. It works for around 70% of us right out of the gate. Beats the hell out of them poking holes in yer hide to no good purpose. [smiley=smokin.gif]

Oh they gave me oxygen at the ER and it really helped.  They just still insisted in treating me like a pin cushion LoL.  I have no clue about the o2@15lpm though.  I'm not even sure what it means LOL.

Everything you ever wanted to know about oxygen, but were afraid to ask,  is right here.

   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It the yellow button to the left of where you're reading this right now.


Linda

PrincessJ wrote on Feb 2^nd, 2009 at 4:55pm:

Kirk wrote on Feb 2nd, 2009 at 4:51am:   If at all possible try and get the ER to give you O2@15 LPM. It works for around 70% of us right out of the gate. Beats the hell out of them poking holes in yer hide to no good purpose. [smiley=smokin.gif] Oh they gave me oxygen at the ER and it really helped.  They just still insisted in treating me like a pin cushion LoL.  I have no clue about the o2@15lpm though.  I'm not even sure what it means LOL.

100% pure oxygen administered at 15 liters per minute through a non-rebreather apparatus (i.e., no nasal cannulas, no partial rebreathers).

PrincessJ wrote on Feb 2^nd, 2009 at 4:55pm:

Kirk wrote on Feb 2nd, 2009 at 4:51am:   If at all possible try and get the ER to give you O2@15 LPM. It works for around 70% of us right out of the gate. Beats the hell out of them poking holes in yer hide to no good purpose. [smiley=smokin.gif] Oh they gave me oxygen at the ER and it really helped.  They just still insisted in treating me like a pin cushion LoL.  I have no clue about the o2@15lpm though.  I'm not even sure what it means LOL.

means use OXYGEN at fifteen litres per minute, using a non-rebreather mask.  Click on the oxygen info link to your left. The info is there.  

Every single hospital I have ever dealt with has no idea what a non-rebreather mask is.  You really have to work to convince them it is necessary.  Most do not stock them at all.  You have to make one using two of the partial rebreather masks

The partial rebreather mask has two vents.  One of the vents is turned into a one-way valve by a small rubber piece that looks like a small disc with a hole in it.  The take the rubber one-way valve off one mask and put it one the other mask.  This turns both of the vents into one-way valves and then the mask is a true non-rebreather.