Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 2 3 
Send Topic Print
Cluster Headache Pain Increase when cmng off PRDN (Read 9724 times)
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Cluster Headache Pain Increase when cmng off PRDN
Jul 12th, 2010 at 3:21am
 
Hello Everyone:

Just wondering if it's just me or if others have noticed it too. 
After a prednisone tapper does the pain seem to increase or is
it just me?  Because it just seem like the ones at the end of a
tapper are WoW!!@!

Cluster Pain Sucks! 

Back to top
  
 
IP Logged
 
jayhedges
CH.com Junior
**
Offline


I Love CH.com!


Posts: 55
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #1 - Jul 12th, 2010 at 7:01am
 
Agree. Not a big fan of Prednisone. My O2 arrived just as the Predisone taper ended and the hits git worse, so I was lucky that I was able to abort very effevtively with O2.

I don't recall what the Predisone is all about but not impressed.

Jay
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #2 - Jul 12th, 2010 at 7:06am
 
Boski,

Prednisone is the world's best-worst drug.  It is very effective as an anti-inflammatory and in halting cluster headaches, but the side effects from continued use are bad.

That's why a 10-day to 2-week prednisone taper is used primarily as a transitional therapy to prevent cluster headaches while titrating up (gradually increasing dosage up to a therapeutic level) on verapamil or another preventative.

Less than 5% of CH'ers who take the prednisone taper achieve a complete abort of their episode and nearly all the rest will experience a return of their cluster headaches when the taper is over if they haven't started on a longer term preventative.

One of the best all-round strategies on treating the cluster headache disorder includes a regimen of preventative, transitional, and abortive therapies all at the same time.  It can be found at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The National Guideline Clearing House lists the EFNS guidelines on the treatment of cluster headache at the following link.  It includes using oxygen inhalation therapy at a flow rate of 15 liters/minute as the first abortive of choice. 

Many of us have found higher flow rates ≥25 liters/minute that support hyperventilation are far superior with faster aborts and greater efficacy than using a flow rate of 15 liters/minute.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

And yes, the intensity of cluster headaches can increase when the prednisone taper is complete if no other preventative is taken.

Take care

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Chad
CH.com Hall of Famer
*****
Offline




Posts: 738
Emmaus, PA
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #3 - Jul 12th, 2010 at 7:48am
 
Pred. destroyed me after the taper the only time I ever used it years ago.  It seems to be a good drug to use when ramping up on other prevents.  The problem I found with pred. is that I wasn't using a prevent so when the taper was over, the clusters came back even stronger.  Kind of like I pissed the beast off or something.
Back to top
  

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #4 - Jul 12th, 2010 at 8:38am
 
Yup, pred tapers worked just once. But like all true hopefuls, when the attacks continued, I asked for another round, and then later, another round. All this did was keep me from finding a better preventative. I know it can work for some, but I've had my last pred taper. lance
Back to top
  
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #5 - Jul 12th, 2010 at 12:49pm
 
OK, thought it was me.  I have been on vacation for 3
years and blocked this all out of my head!
Now my little friend is back nagging again.  20+ years I have
had visits on and off.  O2 doesn't touch the beast!  Imitrex
Vials saved my life.  Tried a lot of stuff.  I feel for the
sufferers  that get no breaks.   I'm waiting for Topomax and
Varapamil to kick in. Never seems fast enough.  Peace to all
and I hope some new something comes soon.
Back to top
  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #6 - Jul 12th, 2010 at 1:07pm
 
Statistics show that O2 works for somewhere between 70% and 80% of CH sufferers that use it to abort attacks. It's my bet that the 20% to 30% who report no effect are not following the directions: high flow (15 liters per minute minimum), non-rebreather apparatus, in other words, saturating the blood with oxygen as quickly as possible.

If O2 doesn't touch it, chances are you're doing it wrong. Read everything at the oxygen info link to the left and follow it religiously.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #7 - Jul 12th, 2010 at 1:27pm
 
Yeah Been there dude!
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #8 - Jul 12th, 2010 at 2:33pm
 
Boski,

If oxygen inhalation therapy didn't work for you I suspect the flow rate wasn't high enough. 

An oxygen flow rate of 7 to 9 liters/minute most frequently prescribed, only works for cluster headaches up to Kip-3 to Kip-4.   Even a flow rate of 15 liters/minute is only effective up to a Kip-5.  At pain levels above Kip-5 with any physical activity while using a non-rebreathing mask, even a flow rate of 15 liters/minute starts becoming ineffective and rarely works above a Kip-7.

Most of us need a flow rate that supports hyperventilation ≥25 liters/minute and some of us use much higher flow rates for even greater efficacy and faster aborts.

We collected data on 366 cluster headaches aborted with oxygen flow rates that support hyperventilation.  The efficacy was 99.7% and the average time to abort was 7 minutes for all pain levels between Kip-3 and Kip-9.

Take care,

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #9 - Jul 12th, 2010 at 3:15pm
 
I have tried the high flow rates, wish it did work.  High flow
rates can cause lung damage too. But that wouldn't stop
me, I cranked that sucker up wishing it would work.  You
guys act like I wouldn't try more if the Doc said try a lot!
When I get hit I can't think of numbers or how long or
which way is up.  All I want is to get that F%$@%$#^
head off!  Not thinking straight or seeing straight it is hard
to get the needle in the top of the vial.  Plus it is really hard
to travel around the city with a big o2 tank.  As it is people
look at me like I'm strange when I sit on a stoop and inject
some imitrex then hold my head in pain for 20 - 50
minutes.   Do you guys make a commish on O2?  And O2 in
NYC isn't cheap either.   20 + years,  We are all experts!
Let's all share, but be nice, remember why we are  here!

BTDT
Back to top
« Last Edit: Jul 12th, 2010 at 3:21pm by boski »  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #10 - Jul 12th, 2010 at 3:56pm
 
Nothing of mine was meant to be taken personally.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
Potter
CH.com Alumnus
***
Offline


Team MOOSE DROOL Stinky
Stuff on a Hook Prostaff


Posts: 3600
Blgs.Mt.
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #11 - Jul 12th, 2010 at 4:00pm
 
boski wrote on Jul 12th, 2010 at 3:15pm:
I have tried the high flow rates, wish it did work.  High flow
rates can cause lung damage too. But that wouldn't stop
me, I cranked that sucker up wishing it would work.  You
guys act like I wouldn't try more if the Doc said try a lot!
When I get hit I can't think of numbers or how long or
which way is up.  All I want is to get that F%$@%$#^
head off!  Not thinking straight or seeing straight it is hard
to get the needle in the top of the vial.  Plus it is really hard
to travel around the city with a big o2 tank.  As it is people
look at me like I'm strange when I sit on a stoop and inject
some imitrex then hold my head in pain for 20 - 50
minutes.   Do you guys make a commish on O2?  And O2 in
NYC isn't cheap either.   20 + years,  We are all experts!
Let's all share, but be nice, remember why we are  here!

BTDT

Take a deep breath,  no need to get pissy.

            Potter
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #12 - Jul 12th, 2010 at 4:19pm
 
Boski,

High oxygen flow rates do not cause lung damage...  That's an old wives tale. 

Navy and Marine Corps pilots have been breathing 100% oxygen while flying tactical fighter and attack aircraft from takeoff to landing for over 70 years and there have been no documented cases of lung damage.  They all get annual flight physicals with chest X-rays so any lung damage would show up if it was there... I might add that these pilots and air crew frequently breath that 100% oxygen at flow rates greater than 40 liters/minute... 

In fact, it's a US Navy regulation that all pilots and aircrew flying in ejection seat equipped aircraft breath 100% oxygen from takeoff to landing...  and they're flying $35 to $60 Million dollar aircraft...  I don't think the Navy or Marine Corps would make this a requirement if it was dangerous...

I've over 3000 hours flying Navy fighters on and off aircraft carriers, and all of that flight time was spent breathing 100% oxygen on missions lasting more that two hours and a few as long as 7 hours...  I can tell you first hand that during air-to-air and air-to-ground combat missions where high G-forces are common, a flow rate of 40 liters/minute and higher is very common... 

I'm still here at 65 and I've also been using high flow rate oxygen therapy that supports hyperventilation for more than 5 years.  With the exception of an occasional snort of imitrex nasal spray during airline travel, oxygen is all I use...  No other prescribed cluster headache medications.   I also still get annual physicals and pass them just as easy now as I did during 24 years of Naval Service.

Starting oxygen inhalation therapy at the first sign of an approaching cluster headache is the only smart thing to do.  The longer you wait, the higher the pain climbs, and higher pain levels take longer to abort.   

For example a cluster headache that reaches Kip-3 during this method of oxygen therapy will take 3 minutes to abort.  If the cluster headache reaches Kip-6 it will take an average of 7 minutes to abort and a Kip-8 will take an average of 12 minutes to abort. 

These are very repeatable results proven with the data collected by 8 cluster headache sufferers on 366 aborts with this method of oxygen therapy.  The bottom line is START OXYGEN THERAPY EARLY!

Getting hit while at work or while on the road during local travel is another issue, and yes, IQ drops rapidly when the beast starts hammering out a tattoo on the back of your eye...  However, a little prior planning and a little training makes this much less a problem as you'll gain a lot of confidence knowing you can abort your attacks with this method of oxygen therapy. 

I keep three M-size oxygen cylinders at home and I have an aluminum M60 for local travel. It holds roughly three times the volume as a 700 liter E-size portable oxygen cylinder so it's good for two to three days at three hits a day.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
My home oxygen therapy kit

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
My "Roadie" that I fill myself with a transfiller rig

New York can be a problem...  but if you don't mind a ruck pack or fanny pack, you can carry two of smaller composite epoxy oxygen cylinders good for one or two aborts each and refill them at home.

The high cost of oxygen, as you put it, is a red herring...  Most M-size oxygen cylinders cost $30 per refill.  I have a 20% copay so my cost is $6 per M-size oxygen cylinder and I get an average of 30 aborts from one of these cylinders so my out of pocket cost per abort is 20 cents...  The last time I checked... an imitrex stat-pen injection costs around $80 before insurance...

If anyone was foolish enough to stay on 100% oxygen for 12 hours continuously with out any breaks breathing normal air, they would start feeling the symptoms of pulmonary oxygen toxicity, but these symptoms would clear rapidly with no lasting effects after a few minutes of breathing normal air.

Now...  With the myths dispelled and out of the way...  When are you going to give oxygen therapy another try?  I'll be glad to help.

Take care,

V/R, Batch
Back to top
« Last Edit: Jul 12th, 2010 at 4:30pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #13 - Jul 12th, 2010 at 4:37pm
 
Not pissy,
But didn't really ask about o2 now did I!
O2 Is bulky and doesn't travel well.
PISSY, Is there someone named pissy around here?

So, How do you do that o2 again? Where can you get it?
Are you sure it works? Please tell me flo rate again?
I'm really bad with numbers when I get a banger. Where does
one stick hose?  Oh really!  Cool!  Was That O2 H2o o2H O well! 
Have Fun!
No Really Was that O2 on High Flo for 12 minuties then 10
off or 10 off and 12 on dude I give you lots of credit! 
Back to top
  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #14 - Jul 12th, 2010 at 4:40pm
 
I'm out.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #15 - Jul 12th, 2010 at 4:54pm
 
Thanks! Brew! Dude. 

Batch,

I did breath high rates of o2 back 20 years ago and again 4
years ago when i had ins.  now working on stock pile of old
imitrex and Bridges to access program to get more. No fun
with no money.  Doc saw me for free to what a doll she is.

Sorry if I rubbed anyone the wrong way but to tell
someone with CH's that they are doing it the wrong way
doesn't seem like the way to go!  Just my Opinion.
 

We have purest " ones that will only use O2"
and we have me
"Will use any thing I have and can afford"

Back to top
  
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #16 - Jul 12th, 2010 at 4:57pm
 
Hey Really I'm Just havin a bad day! With my head.

Sorry if I offended anyone. was not my intention.

Peace everyone.

CH's Do Not Belong!  Go Away!
Back to top
  
 
IP Logged
 
Lefty
CH.com Alumnus
***
Offline




Posts: 759
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #17 - Jul 12th, 2010 at 4:58pm
 
boski wrote on Jul 12th, 2010 at 4:37pm:
Where does
one stick hose?


Bend over and I'll show you.. Huh

The guys were only offering you some friendly advice..

Just seen your apology to the lads which is fair enough my computer not showing all posts for some reason. We all have our bad days...! I will happily remove the fore mentioned hose.





Lefty

Back to top
« Last Edit: Jul 12th, 2010 at 5:08pm by Lefty »  

"When money's tight and is hard to get
And your horse has also ran,
When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
— Flann O'Brien
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #18 - Jul 12th, 2010 at 5:05pm
 
Just like you I guess
Back to top
  
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #19 - Jul 12th, 2010 at 5:15pm
 
I was joking about the hose and a bunch of other stuff.

Thanks for all the advise, Thanks to all that answered the
question that I did ask. 

Peace To all! Hope yours never arises.

Oh! Lefty!  Let me bend over for you!
Back to top
  
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #20 - Jul 12th, 2010 at 5:27pm
 
All in fun! Peace!
Back to top
  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #21 - Jul 12th, 2010 at 5:29pm
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #22 - Jul 12th, 2010 at 5:36pm
 
I love you brew
Back to top
  
 
IP Logged
 
boski
CH.com Alumnus
***
Offline


CH'S Suck for all that
Suffer / The Pain The
Pain


Posts: 208
NYC
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #23 - Jul 12th, 2010 at 5:38pm
 
You guys are all awesome!

Thanks a lot!  hope i didn't really pissss anyone off.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #24 - Jul 12th, 2010 at 6:20pm
 
Boski,

Check the following link for a home oxygen delivery service nearest your location:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Most home oxygen suppliers will offer a better cash price.  If push comes to shove, there's always welder's O2.  It costs a little less but there's usually the hassle of picking up the cylinder at the welders supply store.  An M-size equivalent welder's O2 cylinder will weigh 70 lbs.

You'll need a prescription for the medical oxygen.  The neurologist that writes your Rx for imitrex should be willing to give you one.  The following link provides the "How To" obtain a properly written Rx for oxygen therapy:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

You need an absolute minimum flow rate of 15 liters/minute but ask for a flow rate of 25 liters/minute.  If the Rx is written for 25 liters/minute you're home free...  If you only get the Rx for 15 liters/minute, you'll need to buy your own 0-25 or 0-60 liter/minute regulator.

You'll also need one of the $27.50 O2PTIMASK™ non-rebreathing oxygen mask kits.  You can order from the CH.com store at the left.

If you're having an average of 3 attacks a day, you'll need at least three of the M-size oxygen cylinders for home use for a one month supply.

The best and most economical oxygen regulators come from Flotec Inc. at:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register I have two of the InGage™ 0-60 liter/minute regulators.

I'll see if I can dig up a local source in the NY area for the small composite oxygen cylinders from Luxfer:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

In the mean time pick up some Jose Cuervo Margarita mix...  It's lime juice with extra citric acid and that may help bump up your arterial pH enough to reduce the frequency of your cluster headaches.

I've been drinking a couple glasses of it a night for the last two weeks and haven't had a single cluster headache the entire time...  I could lose my "chronic" status if this keeps up...   

Hope this helps,

Take care,

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Pages: 1 2 3 
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!