Hello fellow clusterheads
My name is Marty I have been  suffering since 95 my first experience lasted for 4 weeks getting hit at 11, pm every night and lasting for about 30 min each time only one hit per night averaging kip 4-5. I went for two years without another hit then they came back they were more intense kip 5-6 and getting hit about the same time every night now it was 2-3 times a night. My sinuses hurt so bad I made an appointment with a doctor and ultimately had sinus surgery I thought this would be the end of the pain. I went back to see my surgeon two weeks later for my follow up appointment to have the tubes removed from my nostrils and then BAM all of the sudden I was in pain that was indescribable kip 10 right there in my surgeons office I thought I was going to die for sure. I was immediately transferred to the E.R. where they immediately presided to call my wife and let her know that there was a problem. The doctors then started to look for possible causes they shot me up with morphine to control the pain that I was in the morphine did not even take the edge off. They continued to monitor me for another 45 min or so. They could not believe that I was still in pain so they gave me another shot of morphine ten minutes later the pain stopped as fast as it came on. The doctor was then able to start a battery of tests including a CAT scan. Everything came back clean they did not know what to tell me other than it must have been a freak reaction to having the tubes removed from my nose three hours earlier so they sent me home. Needless to say I did not even make it to the front door of the hospital and I was hit again. Now I was admitted to the hospital spent about an hour in the E.R. while waiting for a room during this time the hospitals neurologist came to see me asked a few questions, saw my swollen eye and tells me I have CH, he then orders an injection of Imitrex within five minutes the headache was gone. My stay at the hospital lasted five days during this time he started me on prednisone for two weeks and verapamil 360 mg. daily and imitrex as needed up to two 6 mg. inections a day. My insurance company said they would only allow six injections a month, I talked with my neurologist about it he imeditly called my insurance company within two days they would now pay for sixty doses a month, I have never needed that many in a one month period but nice to know I can get them if needed. I have since been diagnosed chronic, my wife asked me to leave she can’t take it and I can hardly blame her?? Since I left about a year ago I had my neurologist up my verapamil to 480 mg. and he also put me on Gabapentin 600 mg. in the last year I have only had 7 CH that I have needed to abort . I still get those pesky daily shadows but I’m not going to go there.
Anyway thank you all for being hear with your wonderful sight.  

Welcome home [smiley=hug.gif] I have found this site to be my saving grace many times over. The information stored in these pages have become like my bible.

I'm a supporter for my boyfriend RJ, and can't imagine leaving just because of his CH. That must have been so hard for you. [smiley=hug.gif] I'll leave the recommendations of tips and tricks to the pros, but know if you need an ear (eyes as the case may be) or a shoulder that I'm willing to help however I can.

Wishing you pain free time, and all the  [smiley=hug.gif] you could need,

Minxy

Welcome Blue Eyes!

Ask your neuro to prescribe you O2 (see the links at the top of the medication forum for details).

Regarding the use of Imitrex check the Imitrex tip on the left and regarding the shadows try strong coffee until you get O2.

Oliver

Gizmo - I have tried o2  I am one of the few that it does not work for.
I really wish it did though, I really hate using the spike.  [smiley=cry.gif]

Blue_eyes wrote on Jan 1^st, 2009 at 2:44pm:

Gizmo - I have tried o2  I am one of the few that it does not work for. I really wish it did though, I really hate using the spike.  [smiley=cry.gif]

What flow rate and mask did you try?

B

Racer1_NC
When I tried o2 I was using it at the rate of 12 lpm That was without a re-breather mask though.

Read the oxygen threads in the medication forum and try it again.

Oliver

Gizmo - I have checked out oxygen info thread, I do have a appointment with my neurologist at the end of the month I will give it another shot and see if it helps.

Thanks - Marty

OK, make sure he prescribes O2 at a flow rate of at least 15lpm and a non-rebreather mask.

Meanwhile you can try energy drinks and strong coffee to abort the hits or at least lessen their intensity.

Oliver

Oh man, I am so sorry about you and your wife.  I'm sorry about you CH too, but more that it drove your wife away.

I'm a supporter for 17+ years and have been married for 26.  I can tell you it ain't for the weak.  But I know it won't kill my husband, it won't kill me to support him with all my might, and we try very hard not to let it change our lives.

We're here for you if you need us and just know that there are spouses out here that take the "in sickness and in health" part of their marriage vows very, very seriously.

Best of luck, and really push for that oxygen - it's a life saver!!  Glad to see another upper-midwesterner here.

Marty,
The most important things with oxygen are it must be at least up to 15lpm flow rate and with a NON-REBREATHER mask, NO nasal canuals. The canulas are worthless.

Many of us have puchased 25lpm regulators and the O2PTI mask available from the 'oxygen info' link on the left of this screen. The mask and higher flow have given me some of my life back and may do the same for you.

I really feel for you with the wife thing, but it sounds like you're probably better off, if she couldn't hold strong for you.

Best of Luck, Don

Hi Marty & Welcome to Clusterville

 Ditto all the above re the 02. I can't use Imitrex (some artery blockage and high cholesterol)  . . . so it's my only abortive . . . can usually kill him in minutes if used early-on in the attack.

 The mask is VERY important.  . . . and you will want to modify the first non-rebreather mask you get.  Many of us (possibly most) have upgraded our masks to those specifically designed for us.  The Clustermasx (no longer available) was a huge improvement over the standard mask, and now the mask linked above and the Sea-long mask, with larger bags and form fitting (tight seal is important) face mask.

 The standard non-rebreather mask have holes in either side (with rubber valve(s) on them (I've had four, all only had valve on one side).  Remove the rubber valve(s), and tape over the holes. At 15 lpm, the standard bag will fill in about 4.5 seconds . . . hold the mask tight to your face and inhale . . .slightly crack the bottom of the mask to exhale (remember, you've taped the exhale ports) . . . while you exhale, the bag is collecting 02 (that's wasted on a rebreather mask) for your next exhale.  100% 02 . . . used at the first sign of attack and you can kill the bastard at Kip 3-4 . . . . night hits are worse because he already has a hold on you before you wake . . . but I can usually hit the 02 and keep him from going up more than 1 point on the Kip scale before he levels off and dies . . . . that's always my goal . . . if he continues to ramp, I'll head for the kitchen for an icepack (dragging my cart and huffing away) and to make a quick cup of coffee.   . . . and he's usually finished within another 5-10 minutes.  

 DO give this another try.  .  . and I really hope it will work for you when used properly . . . and if it does, you won't have to stab yourself near as often (and maybe hoard some extra trex for the really bad cycles)
 
 Very glad you found us.  Read, read, read . . . ask any questions you might have.  This place is a wealth of info/caring/sharing and the answers you will get here come from folks who truly know your pain.

  Be Safe,   PFDANs

    Richard

Welcome to the group Marty.

    I see you have gotten some good advice already.

                     PFD's
                     JPC