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Cluster Headache Help and Support >> Cluster Headache Specific >> Unfortunately, I am Back!
(Message started by: Patrick_A on Nov 16th, 2007, 6:15pm)

Title: Unfortunately, I am Back!
Post by Patrick_A on Nov 16th, 2007, 6:15pm
After 4 very good years without having to deal with this bastard, It is back! Got my 1st one last week and immediately went into denial. Got 2 more this week and there is no doubt about it now. Went ahead and made my appointment with my Dr so I can get a referral to a neuro so I can get on some preventatives.
What are the latest Prevents? My last cocktail was 960 mgs Verapamil with a 60mg Prednisone Taper. That immediately stopped my last CH's but I hated the side-effects. I am going to try oxygen also. I have never tried this before. I would appreciate any and all info regarding the use of Oxygen as an abortive. I am going to attempt to not use Imitrex as an abortive. I think this medicine is evil and causes me Rebound HA's, and turns my cycle from a 6 week cycle to a 12+ week cycle.
I'll try not to cry too much while in cycle ( yea right!)

Patrick_A

Title: Re: Unfortunately, I am Back!
Post by GrandPotentate on Nov 16th, 2007, 6:28pm
Sorry to hear you're back on, but isn't it great to have a place.

Oxygen has been good for me and for many others.  I resisted for quite a while, because it sounded cumbersome.  But I found some coffee during the day usually got me through work, and the O2 could knock down most anything to tolerable within 10-15 minutes.  Read up on this for details - you'll need a lot for a short time.  The Clustermasx is good, usually 8-10 l/m keeps the bag inflated for me.  Overuse can have some long term effects, but most of us only need the brief period.

I lost a good doctor during my long dry spell, and had to go shopping around painfully to find another.  I hope it goes better for you.  Keep in touch.

Title: Re: Unfortunately, I am Back!
Post by ski2k on Nov 16th, 2007, 8:17pm
Welcome, Patrick!

  Try guzzeling an energy drink with the ingredients Taurine and caffeine at the FIRST sign of a hit, and a lot of us find it can knock the beast right out!!
  Read up on the Oxygen info link on the left. It has some good info there. I've used 15lpm through a non-rebreather mask to stop the hits dead in their tracks. The "typical" E size tank will get you through 4-6 hits, and can be transported pretty easily.
  I'm not aware of too many "new" prevents. Most people here have had luck with Verap, Topomax, or Lithium. If nothing else works, you might want to go back on the Verap. If it worked for you before, it just might help again.
  But... O2, O2, O2!!! That's probably the number one abortive used by most of us here, and it's just awesome!

Hope you get relief soon!!
Adam

Title: Re: Unfortunately, I am Back!
Post by Linda_Howell on Nov 16th, 2007, 9:23pm

Quote:
After 4 very good years without having to deal with this bastard, It is back!


 Patrick,  Congratulations on the 4 yrs. PF.  Sorry She's back.  (yes, I call the beast a she.  Hell hath no fury like a woman)

I'm sorry you weren't prepared more for the eventual return though.  Blind-sided you, didn't it?  (no guilt trip, honest.  lol )
Start with what worked last time and go from there.  The energy drinks with lots of caffeine and Taurine as well as Kudzu weren't talked about 4 yrs. ago so look into that.
You hadn't used 02?    Oh jeeze Patrick, this might just be your savior then.  Go here for all the latest, up-to-the-min. info

  http://www.ouch-us.org/medications/oxygen/o2info.shtml   If you have any questions after reading this, I'll be surprised.    :o


Quote:
I'll try not to cry too much while in cycle


  Bull.   When I first got here 9 yrs. ago...I heard very strong men talk about how this pain brought them to their knees in tears.  You cry all you want..that's what we're all here doing with each and every hit.  And when it's over, we blow our nose and carry on.   You will too.

  NOW...  Please get that script for 02.    Linda




Title: Re: Unfortunately, I am Back!
Post by DennisM1045 on Nov 17th, 2007, 10:30am
Hi Patrick.  I'm sorry you had to find your way back again.  Congratulations on the 4 year hiatus though.  That was awesome!

You've already been give some great advice so I'll give you my recent experience.  O2 works for me along with Melatonin (9-12mg) at night a half hour before bed to ward of the night hits.  I use energy drinks (Rock Start or whatever is on sale) in combination with O2.  Kills the beast quick in 10-20 minutes and holds him down while I go on with my life.

That works 90% of the time.  There are 4mg Imitrex injections available now ;;D  Dr started me with 6mg injections but there were too many side effects; rebounds etc.  The 4mg statdose hasn't let me down yet.  Using this strategy I only used an average of one injection a week  ;;D

I'm also on a low dose of verapamil 120mg.  This isn't enough to be a prevent for CH but does help my hypertension.  Next cycle (later winter/early spring) I'll be upping this at the onset to something around 480mg.  Some folks around here can tolerate 1g of the stuff.  My Neuro tried putting me on 480mg when I was out of cycle and I couldn't deal with it.  So the idea is to titrate up at the beginning of your cycle and taper back off after.

You need to monitor your heart when taking Verapamil though.  It reduces your heart rate and can cause irregularities in heart beat.  My resting HR was down to ~50bpm.  Fortunately these side effects go away when you stop taking it.

Read, read, read... I'm sure that's no different than it was the last time around.  Good luck and let us know how you make out.

-Dennis-

Title: Re: Unfortunately, I am Back!
Post by Patrick_A on Nov 17th, 2007, 4:00pm
Hey,
Thanks all! I do have a gameplan. I appreciate all of your imput though. Never can be positive about what will work this time.
If I manage to stay away from the Imitrex, then 90% of my hits will be right after I fall asleep. I am going to ask about the melatonin. Maybe I can also manage to stay away from the Prednisone and Verapamil.
I hate Side-effects, especially the ones that effect my heart. I have a sloppy heart beat as it is.

Pat



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