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! 

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

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:

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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.

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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

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.

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

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.

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.

Yeah Been there dude! 

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

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

Nothing of mine was meant to be taken personally.

boski wrote on Jul 12^th, 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

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.

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My home oxygen therapy kit

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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

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! 

I'm out.

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"

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!

boski wrote on Jul 12^th, 2010 at 4:37pm:

Where does one stick hose?

Bend over and I'll show you.. :-?

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

Just like you I guess

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!

All in fun! Peace! 

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I love you brew

You guys are all awesome!

Thanks a lot!  hope i didn't really pissss anyone off.

Boski,

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

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:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

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

Quote:

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.

what about the alcohol in it?i ve read that alcohol isn't much of a trigger for you anyway but for others?

It appears the pred taper is over and you're getting hit hard. 


Batch wrote on Jul 12^th, 2010 at 7:06am:

...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.

This being said , I take it these preventatives have worked before, one, the other, or both, since you mentioned still waiting.  I can see at this point abortives being important, that empathetic understanding prompted the expanded oxygen replies. 

Venturing a suggestion -- as well as mentioning your present condition here, sometimes adjustments need to be made when not getting any benefit from the preventatives and an informing call to the doctor about this regarding maybe dosage or continued attention can be an idea to try.

:)

You can get away with welder O2?!

I have a place 10 blocks away not sure what they charge.
Will call tomorrow.  I have a Buddy that has an account
and he will bring me some cans I think.  I just need the
reg and "Lefty to show me the way  :D" I mean the o2
mask you mentioned.   That should kill the bast#%$$%

Reg from Surgical store or on-line I assume.  I'm going to
call my Doc. and see what flow she prescribed in past.
I know I would always pump it up but I'll try anything dam
I let them inject my head last week. Big long bloc needle.
That was fun!  It was a strange sensation.

5 - 8 a day right now.

boski wrote on Jul 12^th, 2010 at 6:49pm:

You can get away with welder O2?!

Being open to the info given has its benefits.   ;)




Quote:

"Lefty to show me the way  :D" I mean the o2 mask you mentioned.

And this info, too.   Looking at the top of this section, DJ has a stickied post about them.  A good read, reviews and reactions such as:

Quote:

A reliable, reputable, honest, knowing and familiar source for a product so many use is hard to beat DJ.

are posted.  I think Bill even helpfully provides the link there.   



Quote:

Reg from Surgical store or on-line I assume.

 

High-flow probably more successful on-line, advice always available from the more closely informed.


Unfortunately this involves time. 



Quote:

5 - 8 a day right now.

Hoping for help from the prevents for you.   

Boski:

Brutal string. Take the good from it and ignore the rest. I am an O2 believer but also a buster so go to clusterbuster.com for that. Not encouraged here.

Suggestions if you want to try O2 again. First order the Op2timask. I don't know the guy who invented or sells. Hell I can't even spell it, but its like no other. Buy it for $29 bucks. Then follow this link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE where you can order a high flow regulator for $34 bucks. I paid $195 before I found this one, but $34 should do it. Or if you want to try 15 lpm like the docs say follow this link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and buy a 15 lpm regulator for $21 bucks. Then go the 10 blocks and get yourself a 120 cu ft tank for about $25. Use whatever formula you believe it, but with the hi flow regulator and that mask you can hyperventilate (do danger unless you have heart disease) but work hard at it, breath deep and fast try to empty the bag but set the flow so you can't quite.

You can do this all for about $100. But it will take you about a week to get everything, thru the web (the only way unfortunately).

If it doesn't work, you are one of the 2 or 3% and we are all sorry for that. I would also suggest that if possible, write down your plan. What to buy when it will come, when you will start. Take control if you can. It's half the battle, but the hardest half. You want to come here and rant. Go right ahead. You have every right and if that makes you feel better do it. But we are gonna push back and try to help you. That's why we are here. To make sure the Beast doesn't get anyone, especially you! Don't go away...jay

:D

I will be on it!

Its all worth a try again.

First time with no job and no insurance.  But Life is good!

Black,

You're spot on...  Alcohol is not a trigger for me so I add the obligatory measure of distilled agave...  It does taste much better that way, but I'm positive it will work just as well without it...

For the rest who find alcohol an instant trigger, the Jose Cuervo Margarita mix is non-alcoholic so should work just fine.

Bolski, you'll need a CGA-540 regulator as they will fit the welder's O2 cylinder as well as the larger home medical oxygen cylinders M/H/K sizes. 

The link to Flotec I sent earlier should do the trick.  Ask for Jennifer Rogers or Ashley Storm at the order desk at 1 (800) 401-1723  Ext 217 and tell either of them you want the InGage™ CGA-540 oxygen regulator Pete Batcheller recommends for cluster headache sufferers with knurled knob, 0 to 60 liter/minute selectable flow rates, one DISS fitting and a Barb Fitting for non-rebreathing mask...

The InGage Series 0-60 liter/minute regulator costs $190 and the part number and description for the oxygen regulator you want follow:

"InGage™ oxygen regulator configuration is P/N DR513 700T1. 

This configuration should come with a knurled knob CGA-540 cylinder attach fitting (no wrench required), a single DISS 1240 check valve, 0-60 selectable flow rates and a barb fitting for the O2PTIMASK™ kit oxygen mask tubing."

Tell Jennifer or Ashly you spoke with me and that you need a rush on the order... they'll understand.  Telling them I sent you won't get me a kick-back or you a better price, but it will put a rush on your order as both of them understand our painful disorder. 

You can also email Jenifer at <JenniferR@floteco2.com> so she can send you the order confirmation.  They build these regulators to order so you'll need to print it out, sign, and fax back to Flotec or scan to pdf and email back as an attachment.

A signed confirmation order and credit card number is all they need to start the clock.  It should take a week to 10 days to deliver.

I've also been sending CH'ers to the folks at Flotec for over two years with no complaints.

Take care,

V/R, Batch

Everyone is good!  It's all in fun!

I Love you all! 

But I have no need for numbers 1 - 6 on scale! Always seems
to hit 7+ I had a 3 year vacation looks like 6 - 8 months
with my friend keeping a close watch.

it's weird, but when I'm at peak cycle - really suffering - o2 just doesn't work well for me.  May take the edge off while I'm using it but that's about it and then the h/a goes right back to peak as soon as I stop the O2.  Ditto to tripans (back when I could take them).  Both worked great ramping up and coming back down in cycle, but at very peak cycle didn't work all that great... 
Have no idea why.

LH,

What flow rate are you using for your oxygen inhalation therapy?  If it's not high enough (minimum of 25 liters/minute) to pump CO2 out of your lungs faster than your body generates it through normal metabolism and physical activity, the arterial CO2 level will rise above normal and when that happens...  none of the abortives will work and you're in for some heavy sledding...

If you're not ventilating the lungs fast and deep enough to push your system into respiratory alkalosis... you won't get the fast abort.   You'll know when you've reach this condition when you start feeling the symptoms of paresthesia - a slight tingling or prickling of the finger tips, lips, or back of the neck.  You might also experience a slight dizziness...  These are good signs that you're hyperventilating sufficiently and the abort is minutes away...

It's also possible you have a low arterial pH due to diet or another co-morbid condition.  When that happens, you're likely in a high cycle and you'll need a buffer like lemonade to bring the arterial pH back up to neutral (pH of 7.4) or a more alkaline pH >7.45 to stimulate vasoconstriction.

My high cycles always correspond to a saliva pH that's lower than my daily average during a low cycle.  I measure my saliva pH as an analog of arterial pH.

Take care,

V/R, Batch

Batch.

How often do you see the beast?

Found this out there that mentions O2 after 10-20mins of use?
Is this just wrong?

Snippet:
"However, prior to initiating this therapy, patients must
obtain clearance from their primary care physician since
serious lung disease and other conditions can make oxygen
therapy unsafe or inappropriate. In addition, such oxygen
therapy should not be used for more than a maximum of
10-20 minutes at a single setting."



From the newsletter Headliner, 2004, Issue 33, published
by the  Michigan Head-Pain & Neurological Institute. 
Reprinted with permission.


"High Oxygen Flow Rates for Cluster Headache"
                by Todd D. Rozen, M.D., Neurologist


As discussed in previous issues of the Headliner, cluster
headache patients require effective abortive therapy due to
the extreme intensity of their pain. The two most effective
cluster abortives are injectable sumatriptan and inhaled
oxygen. However, since a large percentage of cluster
sufferers are cigarette smokers and at high risk for
coronary artery disease, many cannot be treated with the
various triptan medications. In these cases, oxygen therapy
becomes the preferred option.

Oxygen, the safest of all cluster therapies, is usually
prescribed based on a landmark study by Dr. Lee Kudrow.
In this study, patients were instructed to use 100% oxygen
via a nonrebreather face mask at 7-10 liters/minute.
Although usually effective, a certain subset of cluster
patients do not achieve relief from this treatment. The
author hypothesized that treating patients with higher flow
rates of oxygen, up to 15 liters/minute, might provide relief
to those sufferers who had not responded to standard
oxygen therapy regimens.

Because MHNI has many intractable cluster patients, it was
decided that a higher dose of oxygen therapy would be
utilized in a few patients. Several important cases recently
reported in the medical literature, found this therapy to be
quite effective in patients who previously did not respond to
lower dose oxygen inhalation.

MHNI's experience indicates patients who do not respond to
the standard flow rates should be given the opportunity to
use up to 15 liters/minute. However, prior to initiating this
therapy, patients must obtain clearance from their primary
care physician since serious lung disease and other
conditions can make oxygen therapy unsafe or
inappropriate. In addition, such oxygen therapy should not
be used for more than a maximum of 10-20 minutes at a
single setting.

The basis by which oxygen turns off a cluster headache is
unknown at this time. Oxygen's constrictive effect on
cerebral blood vessels may play a significant role.

Further study and a larger sample size is needed to provide
conclusive evidence regarding the usefulness of high
oxygen flow rates for difficult-to-treat cluster headache
patients.



Headliner is published and privately distributed by the
Michigan Head-Pain & Neurological Institute for
informational use by our patients and friends. Rights to
reproduction belong exclusively to Michigan Head-Pain &
Neurological Institute. For additional copies or further
information contact:
Jeffrey Pingel, Ph.D., or Scott Madden, Editors, Headliner
Michigan Head-Pain & Neurological Institute
3120 Professional Drive, Ann Arbor, MI 48104


Last modified: 2004

Are you questioning Batch?

        Potter

Just a question before I start breathing!

Good to know if I'm going to go, can kiss wife you know.

Quote:

Last modified: 2004

Just askin! 

Not that long ago! I don't know about you but as I get older
time goes faster!

Just like to know before I go!  Doesn't mean I won't try!

Got tank of welders O2 tdy
O2ptimask kit ordered tdy

And Lefty will show me how to hook up hose!  :D!  "Joke"

Only 5 tdy!  That's better.

Boski,

That's the spirit keep it all tongue and cheek and it will be cool. There's a lot of guys and gals around here with a lot of knowledge who are willing to help at every available opportunity.

I'm like you and get hammered when I come of my pred taper. My last cycle however I had some prednislone left and I took it to finish of my cycle as I was getting heavy shadows for weeks after the big hits had stopped.

Hope you find the right combination dude..! connect the hose to your non rebreather mask the bend over method would be best avoided.... ;)



Lefty

Doc told me to bend over with head between my knees and
breath O2 like no tomorrow years ago!  Anything to that?  He
was an old Dr. to the Stars loved to give many many pills! 
Wow did I have a Buzz those days still had a CH but High
as a kite all day!  All the big names would go there to get
pills I was told.  Yeah, I do get hit hard and long but it is
life, and life is better than the alternative.

Ok Guys!

O2 Mask is on truck thanks DJ!  Update -- it's Here --

Monday back to Doc for one more Occipital Nerve Blockade.

Trying again.  She "The Doc" said I should try again.  So,
hoping to kill this pain I'm there.  She doesn't like me using
Imitrex everyday for so long, tell you the truth neither do I
but I much prefer the Imitrex to the pain. 

I have used Imitrex for months daily but I'm not getting
any younger!   ;)  Guess they aren't happy with it after 40
so much.  I only use a little at a time!   ::)

That little guy in my head is running full-time nonstop.
Anything from 3 to 8 a day. No sleep is killing me!

Chad wrote on Jul 12^th, 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.

Yep, I know exactly what you mean.  It took months to get off of it.  Hadn't had it in years.

When using O2 sitting or standing up straight is the right way, bending over restricts the lungs & diaphram.

If you haven't already, read the "oxygen info" via the link below.

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Don

I should have fixed that, but he was an old Doc.

Now I am upright if I can be.  ;)

I used to bend over too. Learned the correct way on this site. When I get a bad hit it's hard to stay straight up.

Don

boski wrote on Jul 13^th, 2010 at 10:47pm:

Found this out there that mentions O2 after 10-20mins of use? Is this just wrong? Snippet: "However, prior to initiating this therapy, patients must obtain clearance from their primary care physician since serious lung disease and other conditions can make oxygen therapy unsafe or inappropriate. In addition, such oxygen therapy should not be used for more than a maximum of 10-20 minutes at a single setting."

I'm thinking what this article was getting at was CO2 retention.  With some people with very severe lung disease such as COPD (chronic obstructive pulmonary disease), the brain is already accustomed to high levels of CO2 and the brain reflex to increase breathing rate in response to increased blood levels of CO2 is significantly blunted.
If you increase the O2 flow rate to these people, they can sometimes have reciprocal increase in CO2 and without the increase in respiratory drive will have CO2 overload and then metabolic acidosis - this causes all sorts of problems.

Really, though, if you don't have COPD or similar lung disease to the point that you're already on O2, you likely won't have any problem with O2.

Back to the original topic for a sec - I too have been slammed with hits at an oh so wonderful increased level of intensity after tapering off of Prednisone.

I avoided it entirely during my last episode.

How did you avoid it last time?  Not taking the pred?  Or did your other meds kick in before?  Only 2 a day now.

Not too bad.

I am tapering off Prednisone now. This is the first time I have tried this route and I am really worried the clusters in the coming days will be so intense. Yesterdays was aweful.  :-/

Putter:

Oh, I know it's like it charged it up for when it can get you.
I know what you mean.  I felt like a junkie going to the Doc
and asking for one more tapper.  She said nope!
I used Imitrex shot and screamed till it worked then tried
O2 seem to help during day when I caught it as early as I
could.  Even the Imitrex works better the earlier you use it
but you don't want to use it on a little tinge, short shadow
or something tolerable <- they don't happen often but once
in a blueish moon.  It's like a catch 22!

Hope your solution is around the corner.

Peace,

I found Batch's comment interesting: Jose Cuervo Margarita mix... non alcoholic of course. I wonder if they have that stuff in Canada? I will try it.

Putter,

Try some Baja Bob's sugar free powdered margarita mix.  You can order it anywhere in the world over the Internet at: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I just ordered some.

It's sweetened with Splenda and low on sodium so should help avoid the weight gain problem I've experienced at 250 calories or more a glass...  Getting chased down the street by Sumo recruiters gets embarrassing after the novelty wears off... :o

One $5 packet makes a half gallon of mix so it costs less and I'm sure it tastes a heck of a lot better than Red Bull.  It's also higher in citric acid that lemonade so should work more effectively as a buffer to elevate stomach pH.  This in turn will elevate arterial pH and that should help reduce the vasodilation in and around the trigeminal nerve to reduce the frequency and intensity of your cluster headaches.   That's my story and I'm sticking to it so far.

I've been on this regimen for nearly a month and am still PF.  This is still anecdotal until we get a lot more folks to try it with similar results, but so far...  this is the longest I've gone PF since I was episodic over 6 years ago...  If this keeps up I could lose my chronic status...  What a hoot!

Take care,

V/R, Batch