I've been living with "seasonal migraines" for ten years...that is, until I was finally diagnosed with cluster headaches.  I can't tell you the odd relief I have felt over the past 48 hours...I'm not alone, I'm not crazy, etc., etc., etc.  (I'm guessing you've all heard and/or felt this before?)  So now that I know what I've got, what do I do next?  I've got my Imitrex.  I've got my "routines", and if my pattern holds true, I won't have my next episode until next summer.  I get my cluster for 6-8 weeks, with at least one 1-2 hour monstrosity per day.  (My doctors all told me that "I shouldn't be having that many headaches" and "I shouldn't be taking that much Imitrex."  Thanks...I'll take that under advisement :-) 

So...yeah.  Any sage advise?  Is there any permanent fix for this unending horror?  (Other than my super supportive wife, of course...)

Hello and Welcome.....

No "fixes" but you owe it to yourself to check out the O2 link on the left hand side of page.

Hi Pez,

Is that injectible imitrex that you use?

If so, glad to know that you have the most effective form, and this imitrex tip may be of great help to you, as it has been to me and many others. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Haven't seen any cures yet, but people who scour this site along with clusterbusters.com and ask questions tend to find out ways to greatly improve their beast killing rate.

Racer1 certainly has given you one of the hottest tips around already!  :)

Welcome to the board. My advice is to stock up on whatever works and be ready for the beast at any time. He'll stay in a regular routine for years and then jump up and bite your butt just when you least expect him and are unprepared....those times really suck!

If you can get to a neurologist who specializes in headaches you can greatly improve the quality of your life while in cycle. Otherwise your best bet is to educate yourself, and find an open minded GP. I've found the best results using a 2 pronged approach to my cycles:

1: A good prevent med. That's one you take daily, while on cycle, to reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg a day, blocks 60-70% of my hits. Reduces my dependance on my abortives. Verapamil is usually the first try prevent and has proven succesful for many here. Topomax has a loyal following but is called dopey max by many due to its potential side effects.

1(a) A transitional therapy. I go on a 2 week prednisone taper when my cycle starts, 60 mg down to zero. It takes 10-14 days for most prevents to build up and the prednsone will generally keep beasty at bay during this time. It's a great short term med but has some serious side effects if used long term.

2: Abortives. The attack starts now what. 02 should be your first line abort. Cheap, easy, portable, I can be pain free in 6-8 minutes. Beats the old days of 90 minute rides. Read the 02 info link on the left as it must be used correctly or it won't work.

Imitrex injectables are great when I can't get to my 02 but I hate how they make me feel. Imitrex nasal sprays work for many, the pills generally take too long to get into your system to be really effective.

Energy drinks, Rock Star, Monster, I prefer sugar free Red Bull, any containing caffeine and taurine will work, chug it down at the first sign of a hit, will abort or reduce a hit for many. I use them with my oxygen for a 1-2 punch.

No cure yet but with a little trial and error you can certainly reign the beast in.

Joe

Welcome,

Glad to see you found us.. But really WE finally found YOU.

coach bill

Ditto to everything already said, plus you might consider adding melatonin to your nightly routine, say 9-18mgs. Check out some of the melatonin threads on the board to be sure you're taking the real stuff. Blessings! lance

Welcome, so sorry you had to seek us out, but glad you found us.

Ditto on all above and if you are having problems escaping those night time hits aside from melatonin you can try an over the counter allergy pill about 1 hour before sleep.  I use Zyrtec / generic form cetirizine because I can't take melatonin. 

For some chugging a redbull helps to abort a hit as mentioned above and make sure to check out the O2 page START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Just wanted to say welcome to the board and do try the energy drinks . If they work for you they are a relatively cheep and straight away too.

God bless

Nigel

What's up Papa Pez??  Welcome to our cluster world.  Sounds like you have been one of us for a long time.  Lots of experience here. 

Any permanent fix?? Not really but if you get your arsenal together then you can seriously change the pain that you have been experiencing.  Get it ready BEFORE your next cycle, because there will be more. 

I skip the doctors and manage my CH with psilocybes and caffeine.  Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE to check it out.

Other medicines are available with various success rates and side effects.  Oxygen good, more is better.  Lots of other techniques so spend a few minutes (hours really) on these 2 sites and read a bunch.

For many it seems like once you start on the different medicines the CH goes from once every year or 2 to more frequent, but then you have some protection from the pain.  That's been my experience too.   So think carefully about what you want to do. 

Lots to check out and well worth it.  Good luck!

--Shaggy :)

Thank you all so much.  Clearly, I've got a LOT of reading to do ;-)

Papa Pez wrote on Jul 25^th, 2010 at 8:16am:

Clearly, I've got a LOT of reading to do ;-)

Look at it this way - you're at the Home Depot of cluster headaches now. You're just filling your cart with tools, and you have the luxury of having a bit of time to do some comparative shopping.

Quote:

I get my cluster for 6-8 weeks, with at least one 1-2 hour monstrosity per day.  (My doctors all told me that "I shouldn't be having that many headaches" and "I shouldn't be taking that much Imitrex."

We just hate it here when we hear silliness like this come out of a Dr.s mouth.  Unless I read what you said wrong...MANY, MANY people here get "Hit"  with a headache several times per day.  In 23 yrs.  my average would work out to 3 per day, sometimes going up to 7 or 8 times per day.   My experience is the norm, not the exception.     Also...Imitrex can be used twice in a 24-hr. Period.  If you will read the Imitrex tip to the left of here...you can abort more often and still use the same amount that is safe.

The oxygen link is also to the left of here(in yellow)  02 has been a Godsend to so many of us here.  It's safe, cheap, no side-effects and it WORKS!

Brew wrote on Jul 25^th, 2010 at 10:49am:

Papa Pez wrote on Jul 25th, 2010 at 8:16am: Clearly, I've got a LOT of reading to do ;-) Look at it this way - you're at the Home Depot of cluster headaches now. You're just filling your cart with tools, and you have the luxury of having a bit of time to do some comparative shopping.

And unlike in most stores, everyone else in the "store" knows just what you're going through too.