I woke up at 3 am this morning with a Kip level 9, the worst i've had this cycle.  Evidently the propandol ( not sure i spelled it right) is not going to work.  I found a headache clinic in Knoxville, whose Head Physcian was at the Michigan clinic that i've seen mentioned on this list.  His name is Henry C. Hooker.  If he doesn't take my insurance, at this point in the pain, i will do whatever it takes to pay the man. My dr seems to get her feelings hurt if i ask for a referral to a specialist, but she is just going to have to get over it.  After reading this site, it's obvious that she is way behind in how to treat clusters.

What do you do when you wake up hurting this bad and nothing to do for it?  I mean, no oxygen or imitrex?  What do they do if you go to the ER? [smiley=hammer.gif]

Quote:

What do you do when you wake up hurting this bad and nothing to do for it?

Ice packs, energy drink (like Red Bull, Monster, Venom or NOS), cold air, hyperventilation.

Then once it passes - and they always do - I would ask myself why I don't have O2. You can set yourself up through a welding supply shop for less than you'll pay that Head Doctor.

I agree with Brew, on all counts. And, if you go to the hospital, there's no telling what they will offer you. I suppose you may be treated rather quickly with O2, but that hasn't been the experience of many. They won't know what they are treating unless your doctor has been working with you and the ER staff doctors on how to treat CHs. Get the O2 and bring all your info to your new headache specialist. Best of luck, and God bless. lance

I am like the others do whatever you can to get the O2, however with me if I wake up with a K9 even O2 won't break the hit for a long time so I have on a few occassions had to resort to the last line of defense and use a zomig nasal spray and it with O2 will abort.

I have had only 2 experiences with the ER and this was years ago (last probably 10 years ago) and the experience was not good.  My wife drove me so that took a while but by the time we went through all the papework the hit had passed.  Since I had signed in to the ER they had me see a doctor even though the hit had passed.  They gave me some kind of shot (it hurt like hell and my ass hurt for days).  The shot was purportedly to keep me from getting hit again.  No such luck in another 4 hours I got hit again, but fortunately this hit was only a 5 or 6 so I managed.  I had the paramedics come once and while they really were not adept in CH they did (I think as a matter of course) give me O2 and that combined with the time that had lapsed caused the hit to pass.

I am episodic and in an extremely high cycle (for days was literally getting hit 16-18 times a day) but I do have O2 which I am running through (on average 8 E Tanks and 2 M tanks every 5 days).  Fortunately 75% of the hits are 5-6 so I am able to abort with the O2 but have had several (waking me at night) that of 8-9 and after 15 min on O2 had to use the zomig.

Good luck to you and as others said go to the neurologists prepared.

Wishbone

Okay...here it is 12:30 and i have been hurting all day it seems like.  Please tell me how to get the oxygen?  I have a 2:15 appt with the Dr.  If she won't give it to me, how do i get it?  Thanks for all the advice

Beth,

The following chart should help.  It comes from the EFNS Guidelines and Standards of Care on the treatment of cluster headache and other trigeminal-autonomic cephalalgias at the following site:

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

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

This chart also provides the wording for your Rx for oxygen therapy as well as all the codes needed here in the US...

Hope this helps.

Take care

V/R, Batch