After 7 years of predictable clusters they've gone haywire.  Last year was the start with a shift from clusters in the spring to the fall.  Had them again this fall ending in late October.  Now on December 31st, safely out of cycle, I had two glasses of wine and got hit with another cluster, since then everyday I get either shadows or serious 10's.  Last night was the worst, scared my daughter, wife was crying, and I was cursing my life.  I don't know what to do.

Are you on any medications for preventatives?
What do you use to abort a CH?

Do you have O2?

Have you tried the energy drinks? Red Bull and Rock Star, and there are some generic types. Make sure they have 1000mg of taurine in them. These will typically kill a shadow, or even a hit, if not take the edge off it.

You should get in to see your neuro, or the doc who treats your CH as soon as possible.

Yes, I have O2, Imitrex, topomax, and percocet. (Yes I know narcs are not recommended, but they help relax me.)  I'll make an appointment for my Neurologist tomorrow, as well as a mental health specialist.  I really am at my wits end.  Thanks for the reply.

How are you using the O2?
What flow rate, what kind of mask?
Are you hitting it at the very first hint of an attack?

Once I learned how to apply O2, K9-K10 hits are thing of the past.....

Marc

You may not be so safely out of cycle yet. Alcohol, especialy red wine and beer, and the codiene in percocet are major triggers for CH.

Do you have the Imitrex injections? Some use the inhaler but the pills are just too slow... Marc asked about the O2 to verify you are using a NON REBREATHER mask at a flow of at least 10-15 lpm.

Just trying to help,    Don

jw,
Hope you sleep well tonight.  My clusters have never followed a predictable seasonal pattern.....sometimes one year on/one year off and sometimes 6 months on...etc.  No particular pattern, so it may not be a sign of worse times, perhaps just less predictable.

For me, red wine is the ultimate test as to whether the cycle is over...hopefully you are getting close.

gl and hang in there,

Don H

Sorry for the lack of response, it's been a rough couple of days.  Hitting 2 to 3 attacks a day.  I run 15lpm O2, as soon as I can get to it.  Unfortunantly if I'm in a meeting or away from my desk at work that becomes a problem.  Funny that my nuerologist didn't tell me codeine could trigger a headache, I think I'll give them up and see if that helps.  So at the onset of a headache this is my routine.

First sign of pain, percocet, O2 if available, if after 15-20 minutes it's still going stong, imetrex inj.  This seems to work better for the nightime headaches then it does for those that hit during the day.

I have an appoitment at Walter Reed Medical Center in DC in a couple of weeks, we'll see if they can help a little better than my current nuerologist.

Hey there, I hope things are going better for you, or at least less scary... if you do need something "narcoticish",  I've been using valium as a go-to relaxer, and once in a while I use fioricet which is a combo of acetominaphen, butalbitol and caffeine; but I'm med-resistant and nothing else works for me aside from my Adderall.  :D

There are some on the board who jack the 02 up to 25 LPM. And you didn't mention any preventative meds. A med you take daily, while on cycle, to reduce the frequency and the intensity of your hits.

I've had great luck with lithium for many years. I use 1200 mg a day, blocks 70-80% of my hits, 02 and the occasional imitrex poke do the rest. Without the prevent I'm a 2 hit a day guy while in cycle. I'm in law enforcement so very limited on my treatment options. This dose of lithium is hardly noticeable.

Verapamil and Topomax are 2 other popular preventatives, lots of others to read about and  talk with your doc about.

Wishing you some relief soon.....

Joe

Unfortunately, about the time you have your CH figured out, the beast morphs into something diferent.

Sounds like you need a trip back to your neuro.

I used Verapamil as a prevent with some success along with a 10 day prednisone taper.

Hope you get some relief soon.

                                             PFD's
                                              JPC

For the best aborts with O2 you must start at the very first twinge of the attack. Hyperventilating is also key to a quick abort, don't worry you won't pass out.

As Joe Guiseppi suggested, many of us use 25lpm regulators. You have to purchase one of these and you DON'T need a prescription for it. Sometimes you can find them on Ebay, but they are available from Lifegas under the 'oxygen info' link at the left of this screen.

I also use the O2pti mask from Lifegas that is designed just for CH and is a huge help. It makes the old NRB look like ancient technology. These things are to be sold through CH.com soon.

Keep up the good fight,
Don

I am on Topomax as a preventative.  Unfortunately I hate the side effects, and so does my wife.  It seemed to be effective during my last cycle 3 months ago, but I'm beginning to think that taking them has caused my CH to go haywire.  My old neurologist (just fired him  ;D) told me that topomax was the only effective preventative when I told him my concerns.  Hopefully the Army doctors at Walter Reed will be more responsive.  My current O2 regulator only goes up to 15lpm, I'll ask the neurologist for a higher one.

By the way I finaly started being diligent with my headache calendar.  Since 18 Jan I've had 14 attacks and countless shadows.   :-/

There's not much of a chance a Doctor will prescribe higher than 15lpm O2. Very few are aware of this treatment for CH. Even fewer O2 suppliers have them.

You need to buy your own regulator as I mentioned in my last post. This is a safe treatment. Fighter pilots have used it for years and it has been researched in the UK. If you ask a Neuro about it he just may say, 'you're listening to someone from a website?'.

Kick some Beast ass. Coach Bill