Click this link to read a post I like on the clusterheadaches.com message board...

black

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #25 - Jul 12^th, 2010 at 6:24pm

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?

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Oh come on!it's just water.It can't be that bad!

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Kevin_M

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #26 - Jul 12^th, 2010 at 6:26pm

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.

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« Last Edit: Jul 12^th, 2010 at 6:47pm by Kevin_M »

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boski

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #27 - Jul 12^th, 2010 at 6:49pm

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 Cheesy

" 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.

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Kevin_M

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #28 - Jul 12^th, 2010 at 7:12pm

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. Wink

Quote:

"Lefty to show me the way Cheesy

" 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.

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jayhedges

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #29 - Jul 12^th, 2010 at 7:39pm

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

or

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

or

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

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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #30 - Jul 12^th, 2010 at 7:46pm I will be on it! Its all worth a try again. First time with no job and no insurance. But Life is good!
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Batch

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #31 - Jul 12^th, 2010 at 7:55pm

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

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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #32 - Jul 12^th, 2010 at 7:59pm 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.
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Lettucehead

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #33 - Jul 12^th, 2010 at 8:52pm

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.

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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Batch

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #34 - Jul 12^th, 2010 at 9:09pm

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

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« Last Edit: Jul 12^th, 2010 at 9:15pm 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

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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #35 - Jul 12^th, 2010 at 9:29pm Batch. How often do you see the beast?
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boski

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #36 - 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."

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

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« Last Edit: Jul 13^th, 2010 at 11:32pm by boski »

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #37 - Jul 13^th, 2010 at 11:47pm Are you questioning Batch? Potter
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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #38 - Jul 13^th, 2010 at 11:50pm Just a question before I start breathing! Good to know if I'm going to go, can kiss wife you know.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #39 - Jul 13^th, 2010 at 11:55pm Quote: Last modified: 2004
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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #40 - Jul 13^th, 2010 at 11:59pm 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! ! "Joke" Only 5 tdy! That's better.
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Lefty

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #41 - Jul 14^th, 2010 at 9:01am

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.... Wink

Lefty

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When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
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boski

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #42 - Jul 14^th, 2010 at 9:11am

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.

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boski

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #43 - Jul 17^th, 2010 at 10:48am

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! Wink

Guess they aren't happy with it after 40
so much. I only use a little at a time! Roll Eyes

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

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« Last Edit: Jul 17^th, 2010 at 11:10am by boski »

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Joni

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #44 - Jul 22^nd, 2010 at 5:01pm

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.

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #45 - Jul 22^nd, 2010 at 5:20pm 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Don
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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #46 - Jul 22^nd, 2010 at 5:37pm I should have fixed that, but he was an old Doc. Now I am upright if I can be.
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Cluster Headache Pain Increase when cmng off PRDN Reply #47 - Jul 22^nd, 2010 at 10:30pm 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
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Lettucehead

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #48 - Jul 22^nd, 2010 at 11:50pm

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.

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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bejeeber

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Re: Cluster Headache Pain Increase when cmng off PRDN
Reply #49 - Jul 23^rd, 2010 at 1:49am

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.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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