I'm chronic and have had pain every day for over 3 years.  My pain is mostly from 8am to 11 pm almost every 2 or three hours.  The pain lasts for several hours unless I abort it with something.  So far it's been Tylenol, aspirin, and hydrocodone for the worst attacks.  I know that's not good for long term and I'm trying to set up alternatives that I've discovered here.  I have cycles of increased intensity mainly in the Fall-Spring with a little less intensity in the summer.  Now I'm struggling with an earlier-than-normal pain increase, with my work's busy season beginning this month and lasting 3 more. 

Although wine, beer, and colored liquors will trigger, 2 shots of rum will abort in about 5-10 minutes. (too much will have a negative effect, though)  I obviously can't do that during the day.  It is a relief sometimes at night, though.   I realize some of you will flame me over that one, but right now I'm in pain and it's every day without any breaks, and I'm just doing what I know works.  I'm working on alternatives but until then, so be it.  I would love it if I could look at a rum and coke as a once-in-a-while pleasure instead of as a medical treatment.   

I don't want constipation, ED, kidney stones, or memory loss, so the drug preventives that seem to work are scaring me.  I'm going to talk to the doc in a few weeks about them though.

Red Bull seems to help abort faster, but it also wires me up and makes me feel bad in general.  I'm also thinking I'm getting a worse rebound after the abort.  I've started drinking half a can, but I can't tell it's doing any better and still getting what I think may be a rebound about 1 1/2 hours later.  I may give up on that one or try one of the different brands. 

I've been taking D3 and fish oil for over a week now at the levels recommended here, but can't tell if it's helping or not at this point. 

I'm still trying to get my oxygen set up.  I have an appointment with the GP in a couple of weeks to discuss prescriptions, and I don't expect a problem there.  Until then I'm picking up a welding tank today from a supplier that I found close to my house, and my 25lpm regulator and mask should be here by tomorrow. 

Will oxygen be enough to get me through the day?  Once aborted, will the beast stay gone for a few hours so that I can complete a sales presentation and be able to talk to people with my wits about me?   All this is going through my mind and I'm getting scared as my pain seems to be increasing early in the season.  I don't think I can get through my job if it gets worse than it did last fall. 

Sorry this post is all over the place and probably confusing, but that's where my mind is right now.   :-/

If you get relief from alcohol and hydro's you dont have CH. :o 02 is the best most safe abortive. ;) You will love it if it works for you.  8-)Get to the neurologist.  :)
tachead

The 02 will help if hyperventilated correctly with a NON-rebreather mask.

Everything else you've mentioned doing is counterproductive physically and mentally.

Read everything you can on this board, then read it again.

-Gregg in Las Vegas

tachead wrote on Sep 10^th, 2012 at 2:22pm:

If you get relief from alcohol and hydro's you dont have CH. :o 02 is the best most safe abortive. ;) You will love it if it works for you.  8-)Get to the neurologist.  :) tachead

Pain behind the left eye as described above.  Began the first year during the night around 2 am and 5 am.  It has since morphed into a daytime deal.   I have been to a neurologist and had an MRI.   My diagnosis is chronic cluster headaches.    Hopefully I'll have O2 operational by Wednesday when everything arrives.  I got the filled tank today. 

Quote:

I would love it if I could look at a rum and coke as a once-in-a-while pleasure instead of as a medical treatment.

Knock of the rum and cokes and you will have taken the first steps to remission, from more than CH. Alcohol is a trigger. Plain and simple. Sorry but it has not been a medical treatment since the 1880's. It's your pain.

Quote:

I don't want constipation, ED, kidney stones, or memory loss,

I would take all of that to relieve just one CH attack. Thats my pain. :)
tachead

I can't bare the thought of having O2 in the room and no way to use it. I didn't say this, I have heard of people getting O2 straight from the tank, put your mouth around the hole and open the valve slightly.

Don't forget you need a mask with a bag on it. It's common to get the wrong mask. Read the "oxygen info" tab at the left. Required CH reading.

Don

Skyhawk5 wrote on Sep 11^th, 2012 at 12:45am:

I can't bare the thought of having O2 in the room and no way to use it. I didn't say this, I have heard of people getting O2 straight from the tank, put your mouth around the hole and open the valve slightly. Don't forget you need a mask with a bag on it. It's common to get the wrong mask. Read the "oxygen info" tab at the left. Required CH reading. Don

Thanks and yes having it without being able to use it is torture.  I thought about trying what you suggested but I'm afraid of not getting the flow right and just wasting my tank without getting any benefit.  The mask is correct with the bag.  I hope my mask and regulator come today but they're coming from different suppliers and may arrive on different days.  The good thing is my oxygen supplier is an auto parts store within walking distance of my house, and they know what I'm using it for.  I turn in the tank when empty and they hand me one that's full for less than $20.00.  They're really cool about it.  I just hope all this works like I think it will. 

Be sure to check your mask for any open holes on the sides. If they're open tape them shut. Don't let any outside air enter the mask. If the holes have rubber flaps over them this is acceptable.

I use the O2pti mask available here at the CH.com store. It's made just for CH. Well worth it.

Don

Well the mask came today but not the regulator.  The mask has the holes but I'm armed with tape.  Tracking shows the regulator arriving on Wednesday.   It was a bad cluster day today and I had two long sales appointments.  I am so looking forward to getting that regulator and doing the O2 thing. 

fun2drum wrote on Sep 11^th, 2012 at 10:50pm:

Well the mask came today but not the regulator.  The mask has the holes but I'm armed with tape.  Tracking shows the regulator arriving on Wednesday.   It was a bad cluster day today and I had two long sales appointments.  I am so looking forward to getting that regulator and doing the O2 thing.

Does your mask have a bag attached to it?

Will your high flow regulator fit your o2 tank?

LasVegas wrote on Sep 11^th, 2012 at 10:58pm:

fun2drum wrote on Sep 11th, 2012 at 10:50pm: Well the mask came today but not the regulator.  The mask has the holes but I'm armed with tape.  Tracking shows the regulator arriving on Wednesday.   It was a bad cluster day today and I had two long sales appointments.  I am so looking forward to getting that regulator and doing the O2 thing.  Does your mask have a bag attached to it? Will your high flow regulator fit your o2 tank?

Q #1:  Yes.
Q #2:  I hope so. 

fun2drum wrote on Sep 12^th, 2012 at 6:52am:

LasVegas wrote on Sep 11th, 2012 at 10:58pm: fun2drum wrote on Sep 11th, 2012 at 10:50pm: Well the mask came today but not the regulator.  The mask has the holes but I'm armed with tape.  Tracking shows the regulator arriving on Wednesday.   It was a bad cluster day today and I had two long sales appointments.  I am so looking forward to getting that regulator and doing the O2 thing.  Does your mask have a bag attached to it? Will your high flow regulator fit your o2 tank? Q #1:  Yes. Q #2:  I hope so.

Here's what you need to know:

The CGA870 connector is for the “E” or “D” tanks. 

The CGA540 connector is for the “M”, “H”, or “T” tanks. 

Good Luck ;)

-Gregg in Las Vegas

The CGA540 came late today while I was out, and I'm happy to say everything fits right.  I need to buy a good wrench that I can use to connect the regulator, but other than that I have a complete system.  Now I'm waiting to have a nice big CH attack.  It's night now so it's unlikely I'll have an opportunity to test it until tomorrow morning.  The beast comes alive between 8:30 and 9 am every morning, so I'll try it then and let you know how it went. 

I find it very odd that you don't get attacked at night, as almost all of us do and wish we could get a good night sleep when in cycle.

That's great you got the proper regulator and connection.  The wrench is definitely a struggle but you will manage just fine as all drummers have strong hands, right? ;)

Good luck with your new o2 setup, just make sure to let us know if you need any tips/assistance and/or how it's working for your attacks.

And don't forget to eliminate the pain pills and booze! :-X

-Gregg in Las Vegas

LasVegas wrote on Sep 13^th, 2012 at 12:09am:

I find it very odd that you don't get attacked at night, as almost all of us do and wish we could get a good night sleep when in cycle.

I'm another one who only really gets daytime / evening CHs, with perhaps 1 or 2 ever when I've been asleep at night.

The underlying theme I've already picked up on here is that everybody's different and the beast can change the rules at times.  My first year I had them at night and would have to go to the ER at times for relief.  Switched to day for the past couple of years.  I still get one a night a few times a month though, but not as a rule.

LasVegas wrote on Sep 13^th, 2012 at 12:09am:

... That's great you got the proper regulator and connection.  The wrench is definitely a struggle but you will manage just fine as all drummers have strong hands, right? ;) Good luck with your new o2 setup, just make sure to let us know if you need any tips/assistance and/or how it's working for your attacks. And don't forget to eliminate the pain pills and booze! :-X -Gregg in Las Vegas

Thanks a lot, and drummers hands aren't known for being coordinated in anything except for banging on things.  :)

BTW - it's not like I'm guzzling a 5th of rum every night.  It's just once in a while I can use a little to knock it out when it's really bad in the evening.  Besides, too much and it WILL trigger.  All the same, I'd rather use the O2 if it works.

Update:  The 8:30 was a little late and came in around 9:15 am.  The O2 brought it down from a 4 to a shadow in about 10 minutes at 15 lpm.   I know it was the O2 because it never goes away on its own that fast.  I stopped at 10 minutes, but the shadow pain went away to nothing within about 10 more minutes.   It looks like I'll probably need to go to 20 lpm, and with my small M tank I'll get about two headaches per tank.  I may get a larger tank for home use but that'll be a PITA to haul back and forth for replacement.  I now need to find a suitable preventive so I can use the O2 less often.  Thanks again for all the great help so far.

Good job...glad you found some relief.
tachead
Rule one with CH...there are no rules.

Awesome! 
You sound like you're on the right track drummer 8-)
Keep us posted!
-Gregg in Las Vegas