Suffered clusters for decades.  Caught a break from them for about the last two years.  Starting a couple of nights ago, they are back.  99% starts during sleep.  Get up IMMEDIATELY and take one ESGIC (Fioricet)  40MG.  Pain at that point is about an 8 and within 30 minutes . its gone and I can resume sleep.  This med is to be taken every 4 hours as needed, but just one and I am good until the next night .. thank God.

I know I am MOST fortunate to have something that works.  I just hope it stays that way.  With any luck, this series won't last too long.

Just wanted to introduce myself and 'join the club' so to speak.  Good luck to you all .. may you have ample relief anytime you need it.

Welcome to the community John!  Check you PM's.

Dallas Denny

Welcome to the club John. In the early 80's, I used to use fiorinal for my attacks. It would ratchet the pain down and in less then an hour would eliminate most of them. Over the years it became less and less effective for me.

Now I'm one of the "oxygen evangelists" you'll see a lot of on this board. An attack starts, in less then 10 minutes I'm completely pain free just by huffing the 02. No drug side effects and it's cheap. Read the oxygen info link on the left, been a life changer for many of us.

Have you ever been put on a prevent med while on cycle? I use Lithium while on cycle, blocks about 60-70% of my attacks. Verapamil is a common first line prevent and Topomax has a pretty loyal following on the board.

Energy drinks are all the rage too now. Rock Star, Monster, any containing the combo of caffeine and taurine. Chug one down at the first sign of an attack, it will reduce and even eliminate an attack for many.

Glad you found us.

Joe

Thank you Joe for the reply.  It is apparent O2 is effective.  My problem is my medical care comes from the Veterans Administation and they are very tough to deal with.  I have strong doubts they would put me on O2 .. which is why I am grateful to God the Fioricet works for now.  I predict it will be a 50/50 chance that it will get me through series or start not working.  At that point, I will proably have to go to industrial O2 and get a mask .. which I hope doesn't require a prescription.

As for preventive care from the VA .. I have none .. just the Fioricet and as I mentioned, I got a 2-year break recently .. so the condition is not 'active' in my VA medical records.
It seems my best strategy is to not bother with VA if Fioricet starts to fail . and will just go to O2 'on my own'.
Thank you again for the warm welcome and advice.

OH, . I figure what helps is the caffiene in the Fioricet .. which would also explain how energy drinks help.  Problem for me with energy drinks is that since they 'hit' during sleep . in the middle of the night, an energy drink would keep me awake (surprised the Fioricet doesn't) .. so I am hesitant to try energy drinks.

hey john, welcome to the forum man. I see you might have to get o2 on your own. Thats what I had to do. I bought an "M" tank, and just today bought 2 used "E" tanks off  e-bay. Now I can return dads tanks. I built a "refiller" to refill my 'E" tanks at home off the large M tank. Works like a champ. The refiller is a simple hydrolic hose(4000 psi) and some threaded brass fittings. Hope that helps.

Hey John,

If it were me, if it was looking like a 50/50 chance of the current treatment would stop working, and if there was any way to finance the industrial O2 with hi flow regulator and non rebreather mask (none of those require prescription), I would jump on it now, get the O2 up and running, and be all ready to counterattack the CH beast big time if need be.

Keep in mind that an appropriate mask and regulator will likely have to be ordered online, and there will be a certain amount of time that will have to be spent waiting for those shipments to arrive.

Bejeeb, .. you make an excellent point .. better to have it BEFORE I need it than not have it when I do.

I will start 'on it' right away.  Thank you.

Hate to pile more stuff in your wagon on your first day here......but!!!!

You mentioned night time attacks. An over the counter supplement, Melatonin, can be found in health food and vitamin stores. Start with 6 mg just before you go to bed. Go up in 3 mg increments. For many it will stop/reduce the night time terrors, the "wake up attacks." It doesn't work for everyone, but it's dirt cheap and worth a shot.

Also, consider adding a daily supplement of Magnesium, and Calcium with Vitamin D. It affects your arterial PH balance.....am not competent to explain it any further...but it makes you less succeptible to CH attacks. Again, it's a cheap tool that has helped many.

I'll stop now! ;)

Joe

Thank you all for all the tips and support.  You people are mavelous in so many ways.

I can refer back to the thread as I 'gather my forces' .. and hopefully I can avoid some suffering.

Just want to say thank you all .. and I am listening to all the great advice.