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Still hurts...


MartyPinto
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Hi Ya'll

I am new to this site but not to CH - had them for 30+ years - episodic. Thought that I outgrew them since PF the last 5 years but I was not so lucky. I have always handled this without any medications except for lots of extremely hot coffee. I tried O2 but the cold air makes it a lot worse for me - need heat for some reason...  So anyways, this current episode started 2 months ago and it went as expected up until 3 weeks ago when it changed from hits lasting (as they always do) 35 - 40 minutes to 2 hours KIP 6 - 8!!! I could not take that. My Dr put me on Verapamil and Prednizone. Prednizone for 3 days as 60 mg and after that tapering off by 10 mg per week - I am now on 40 mg per day. The first 3 days on 60 mg the attacks went away and I could sleep. 2 days after going down to 50 mg I started shadowing and now, at 40 mg, I get hit at night - KIP 6 or 7 every 2 hours or so. Is this the way it works with Prednizone? I had some hopes that it would "take it away" :) Also, I am experiencing some dry white patches of skin (very small - like blisters) in the corners of my mouth... What the heck is that and is it related to the Prednizone???

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Marty', typically prednisone is a "bridge" medication to give you some painfree time while the verapamil takes effect.  (That seems like a very long taper to me, but I might be wrong.)  What dose of verapamil are you taking?  It's not unheard of for people to need ~960mg/day to be effective when they are in cycle.

What about Imitrex as an abortive?  Can you say more about that oxygen thing?  Cold air from the mask bothered you?

I suggest that you look at the vitamin D3 regimen in the ClusterBuster Files section of the board, and while you're there, took a look at busting (the numbered files), too.

In the short run, a 5-Hour Energy might work better than just the coffee (most people like them very cold, but you might not), and speaking of hot, some people have found that it helps them to put their feet into a bathtub with water that's about as hot as they can stand.

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I started on 160 mg of Verapamil and second week doubled it so I am at 320 mg right now. I am taking other blood preasure meds also so I guess that it is a concern for the Dr. The O2, re-breathable (the one with an extra bag attached to it) at 12 - 15 lpm, for some reason, is so cold that it sends me screaming. It is like there is a membrane in the very back of my nostril "air-intake" that feels as if is is dry and cracked and I can't even breathe through my right nostril when it is at its worst... Sound strange but that is the best way I can explain it. Tried the Imitrex injection - scary stuff for me with my heart racing. Tried looking a the D3 regimen but my head is not clear enough for all the info yet - I will look at it later. I agree with the thought that CH somehow is inflammatory-based and like if the body is missing something vital - could be a vitamin deficiency, it makes a lot of sense to me.

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You can use a lot less Imitrex per injection (2mg instead of 6mg).  Take a look at the "Extending Imitrex" file in the ClusterBuster Files.

I don't know about that coldness with the O2 . . . maybe others can comment.  You can inhale through your mouth only, and the "ClusterO2 Kit" has a breathing tube that can be used instead of a mask.  Don't know if that's helpful.

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Hi Marty!

Some use a 'bubbler' attached to their O2 for moisture. That cold, dried out feeling sucks.

To make one: Take a clean jar with a lid. Punch or drill two holes in the lid that are big enough for your tubing to run thru. Fill the jar about 2/3 full of water and put the lid on it. Zip tie or tape to your tank at a convenient height. Now, you need to cut your tubing. The one from the tank is cut short because it is going into the jar and down into the water. The other half goes into the jar - but not in the water. Tape both tubes in place. Now, when you breathe, the O2 goes into the water and bubbles. The O2 that you breath is above the water and now moisturized and a bit warmer.

Be sure to change the water occasionally. If you are on well water, I would suggest that you add a drop of old fashioned liquid bleach to the water to prevent algae growth. Not powdered and not scented.

Prednizone: Yes, that is the way it works for most people. Below a certain amount per day, the hits come back. For some it is 20mg and others 40mg. But long term use is really bad for you.

Keep some caffeine in the fridge! Grab it and start chugging on your way to the O2 or before you start it. My tank is at the other end of the house! You can also start deep breathing before you get there too. Just remember, inhale deeply and exhale with force. A crunch at the end helps. You are trying to get all the CO2 out. I find that this saves O2. Method is a major factor for the efficacy of O2.

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