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Helpful Hints - MUST READ!! (Read 15054 times)
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Re: Helpful Hints - MUST READ!!
Reply #75 - Jul 11th, 2012 at 3:57pm
 
Welcome to the board. Are you working with a decent headache doc yet? A short course of prednisone will often times provide complete relief, but is best used while starting on a decent prevent med like Verapamil, Topomax or Lithium. While pred will generally stop the attacks for me, when i go off of it without a prevent in my system, it kicks my ass making up for lost time! Pred is not something you cna take long term but on a short term basis is great to get you back on your feet. Do you have eny med you're currently using as prevents or abortives?

Joe
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Re: Helpful Hints - MUST READ!!
Reply #76 - Mar 22nd, 2013 at 7:44pm
 
I am a 61 year old female with, what I believe to have is cluster headaches.I have been to many Dr.s with no success other than to blow it off as sinus or allergys. I started having them about 8 years ago.I have done a lot of research on my own. One Dr told me she believes I have ch's but did nothing to help me.The pain is the worse pain I have ever felt or imagine could ever happen to a human being and still live through it. I dread night because I know they will wake me up in horrible pain again. I went to a new Dr today and told him about them(headaches) He said that he has heard of them and heard they were very painful and wants to try me on a low dose (25 mg) of Toprol. We will see I guess. It is the first meds that I have ever been put on for cluster headaches.I'm wondering if anyone knows if Toprol can possible help me? Cry
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Re: Helpful Hints - MUST READ!!
Reply #77 - Mar 22nd, 2013 at 11:04pm
 
Hi Linda and welcome

There are some journal articles linking toprol and cluster headache (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register) however it isn't one of the commonly used treatments.

You really do need to work with a headache specialist to get a definitive diagnosis as most doctors, even most neurologists have little training in the area of headaches.

If you read up here you'll learn a lot more about CHs, but you really do need that diagnosis.
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Re: Helpful Hints - MUST READ!!
Reply #78 - May 28th, 2013 at 11:08pm
 
I would like your opinion on liquid oxygen verses gas oxygen? My new Neurology put me on gas oxygen (which works) but my insurance will only pay for liquid oxygen!
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Re: Helpful Hints - MUST READ!!
Reply #79 - May 29th, 2013 at 11:54am
 
Linda,

The simple answer is a home liquid oxygen (LOX) system can only deliver oxygen at a maximum flow rate of 15 liters/minute while compressed gaseous oxygen systems can deliver oxygen up to 60 liters/minute and demand valves up to 140 liters/minute.

Why that answer is important to a cluster headache sufferer is another story you need to understand.

The most effective method of oxygen therapy involves flow rates that support hyperventilation...  In simple terms that works out to oxygen flow rates between 25 to 40 liters/minute. 

That might sound like a high flow/respiration rate but it really isn't.  If you jogged for 3 to 4 minutes or climbed 3 to 4 flights of stairs at a rapid pace...  Your respiration rate and tidal volume of air inhaled with each breath would increase to cast off the additional CO2 your body produced as a result of the increased energy expended.

If you did the math, after either of the above physical activities, your minute volume of lung ventilation would be around 40 liters. (Minute volume = the volume of air inhaled in one minute).  Expressed as a flow rate... 40 liters/minute.

There are several brands of regulators capable of delivering gaseous oxygen at 0-25 liters/minute.  Flotec Inc. manufactures regulators capable of delivering oxygen at 0-60 liters/minute.

The problem with liquid oxygen systems is they can only deliver 15 liters/minute.  Why?  It takes a lot of heat energy to boil/evaporate LOX to gaseous oxygen.  One liter of LOX will expand to 861 liters of gaseous oxygen. 

As all home LOX systems use room air to heat the evaporator that converts LOX to gaseous oxygen and higher gaseous oxygen flow rates requires additional heat energy to meet that demand, you reach a point where room air cannot provide the needed heat energy.  At that point the evaporator freezes up and the flow rate drops like a rock.

Why are oxygen flow rates that support hyperventilation more effective with shorter abort times?  The answers are illustrated in the results of a pilot study we conducted 2007-2008 comparing this method of oxygen therapy to oxygen therapy at a flow rate of 15 liters/minute.

Seven CH'ers, (one woman - six men, one episodic - six chronic) logged a total of 366 aborts using oxygen flow rates that support hyperventilation.

We used a primary outcome measure of pain free in less than 30 minutes.  There were 365 successful aborts for an efficacy of 99.7%.  The average abort time for all pain levels between 3 and 9 was 7 minutes. 

The one failure occurred when the CH'er got trapped out of his house without a key when his wife went shopping while he was out for a walk. By the time he finally broke into his home and started oxygen therapy at flow rates that support hyperventilation, his cluster headache pain had risen to nearly 10 on the 10-Point Headache Pain Scale.  He tried to abort the Kip-10 but was forced to resort to a bailout escape abortive shot of imitrex after 30 minutes...

Each CH'er logged their aborts for a total of 8 weeks.  Accordingly, this study provided a set of meaningful longitudinal results... where the typical gold standard RCT requires participants use the abortive only once then switch randomly and blindly to a comparator (O2 @ 15 liters/minute) or placebo (air @ flow rate that support hyperventilation).

We had originally planned to have all participants log aborts for a week using a flow rate of 15 liters/minute.  However after the first participant completed a week collecting abort times and pain levels at a flow rate of 15 liters/minute (35 aborts) and then switched to the demand valve method, the results were so significant and dramatic, we elected to skip collecting any further data at 15 liters/minute. 

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As you can see, a CH'er using the demand valve method of oxygen therapy (DEVO2) or a regulator capable of 25 to 60 liters/minute (both methods support hyperventilation) the abort times were three to four times less than the corresponding abort time using oxygen therapy at a flow rate of 15 liters/minute at the same cluster headache pain level.

For example, a CH'er using a flow rate of 15 liters/minute can expect to abort a cluster headache at pain level 7 in an average of 27 minutes while the same CH'er using the demand valve method or a 0-60 liter/minute regulator can expect to abort a cluster headache at pain level 7 in an average of 7 minutes...

You'll also notice the time to abort increases exponentially as the cluster headache pain level increases.  This is particularly troublesome for CH'ers limited to a max oxygen flow rate of 15 liters/minute.

At pain level 8 (KIP-8) using a flow rate of 15 liters/minute, abort times are almost all over 30 minutes.  At pain levels above 8, many will not be able to abort a cluster headache at a flow rate of 15 liters/minute.

Now for the dollars and cents discussion with your insurance company...  The average cost per abort before insurance using oxygen flow rates that support hyperventilation is $1.20 to $1.50.  That figure is based on a fair market price for an M-size oxygen cylinder refill of $30 to $35 (no delivery charge or rental expense for regulator and mask)...  At an average of three cluster headaches a day that works out to $4.50/day, $31.50/week and $126/month. 

Demand valves are great but expensive... ~$500 for a demand valve and regulator...  You can get a 25 liter/minute regulator for $25 to $35 or a 0-60 liter/minute regulator from Flotec for ~$190.  Either will work just as effectively as a demand valve...  DJ has the O2PTIMASK Kits at the CH.com store at the left for $29.50.

If you used generic sumatriptan succinate (imitrex) nasal spray (max of 2 per day) at $25 per spray...  the cost is $50/day...and $350/week.

If you used generic sumatriptan succinate (imitrex) subcutaneous injections (max of 9 per month - a limit set by most insurance companies) at $100/injection...  the cost is $900/month.

If your insurance company fails to respond to this logic... take up welding...  A complete M-size welder's O2 system with regulator runs around $300 and refills around $35.

If you've followed any of my other posts on using the anti-inflammatory regimen as a cluster headache preventative...  the cost per day for the basic regimen (Costco prices) with 10,000 IU vitamin D3 is 20 cents...

See the following link for details...

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Take care,

V/R, Batch
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« Last Edit: May 29th, 2013 at 12:21pm by Batch »  

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Re: Helpful Hints - MUST READ!!
Reply #80 - Jan 22nd, 2015 at 2:49am
 
ok...I try to avoid this place because I don't want to be reminded of the beast when I'm not in cycle. And, when I'm in cycle...I don't care about anything but being out. Get what I'm saying?

That being said.....here goes

My cycle is 3 months on...3 months off every fucking year of my life for the past 30 years. Always end of October through end of January......PF until June...and, here we go again until THAT 3 month period starts back up and I get ready for October again.

I fortunately found a doctor that is sympathetic and somewhat enlightened (thanks to my insistence) and kicked me into Imitrex (stat dose...injections, a Godsend) which, more than likely kept me walking this earth. Because I'd just about had enough after all this time.

BUT....through all my years of dealing with this shit without any medicinal assistance...I HAVE developed a few moves that can help you through the night/day if you can't get any pharmaceutical help.

These "headaches" originate in your trigeminal nerve area. I know this because my daughter, who is in her third year as a pre-med student ( who says she decided on a medical career after growing up watching me go through what I go through) validated my "pressure point" system of dealing with clusters without medication.

Look up "trigemenal" and you'll see that everything there is directly related to what you feel. And, where you feel it.

First...40 ounces of fresh brewed, strong as fuck coffee...hot as you can sip it. Sip it as fast as you can...get that caffeine to work for you (it changes the bloodflow)...and, then..........

There ARE a couple places that....if you press hard enough on the right spot (feel around...it's where it REALLY hurts. Yeah...that's it)...and hold there like your life depends on it (do NOT EVER let up, no matter HOW much it hurts or you'll start all over again.)  Now, push in with your fingers like you're trying to penetrate through your skull into your brain...(you've done it before...just not this specifically)...and it will reduce the duration of your cluster. Trust me. It fucking works. As long as you don't stop. You CAN'T STOP! No matter how tired your fingertips get (and, they will).

Cut it from hours to .....maybe 30 minutes. It's a fucked up blood flow thing through the trigeminal nerve that we CH sufferers, I guess....are born with.

I have access to all the Imitrex I need now...but, I remember when I didn't. And, I'd love nothing more than to be able to help YOU with your suffering.

Because no one was there for me.
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Re: Helpful Hints - MUST READ!!
Reply #81 - Jan 22nd, 2015 at 5:27am
 
Wow, KONG! Thank you for wanting to help us with our cluster headache pain. But, you joined this website back in 2007 and now with your very first post today you've tried to tell us what we all knew years ago.
Sip 40 oz. of very hot coffee as fast a possible? No thanks. A 12 oz. can of cold Red Bull or a 2 oz. shot of 5 Hour Energy drink will work much better and much faster.
The pressure point thing might work for you but adding pain to stop pain is not for me. An ice pack is my relief.
The "headaches" originate with the hypothalamus (not the trigeminal) and cause swelling of the the blood vessels around the trigeminal, putting pressure on the trigeminal and causing the pain.
And, blood does not flow through the trigeminal nerve.
Finally, please clean up your dirty mouth.
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« Last Edit: Jan 22nd, 2015 at 5:44am by BobG »  

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Re: Helpful Hints - MUST READ!!
Reply #82 - Jan 23rd, 2015 at 3:10pm
 
BobG wrote on Jan 22nd, 2015 at 5:27am:
Wow, KONG! Thank you for wanting to help us with our cluster headache pain. But, you joined this website back in 2007 and now with your very first post today you've tried to tell us what we all knew years ago.
Sip 40 oz. of very hot coffee as fast a possible? No thanks. A 12 oz. can of cold Red Bull or a 2 oz. shot of 5 Hour Energy drink will work much better and much faster.
The pressure point thing might work for you but adding pain to stop pain is not for me. An ice pack is my relief.
The "headaches" originate with the hypothalamus (not the trigeminal) and cause swelling of the the blood vessels around the trigeminal, putting pressure on the trigeminal and causing the pain.
And, blood does not flow through the trigeminal nerve.
Finally, please clean up your dirty mouth.


Yep.

           Potter
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Re: Helpful Hints - MUST READ!!
Reply #83 - Jan 23rd, 2015 at 4:07pm
 
BobG wrote on Jan 22nd, 2015 at 5:27am:
Wow, KONG! Thank you for wanting to help us with our cluster headache pain. But, you joined this website back in 2007 and now with your very first post today you've tried to tell us what we all knew years ago.
Sip 40 oz. of very hot coffee as fast a possible? No thanks. A 12 oz. can of cold Red Bull or a 2 oz. shot of 5 Hour Energy drink will work much better and much faster.
The pressure point thing might work for you but adding pain to stop pain is not for me. An ice pack is my relief.
The "headaches" originate with the hypothalamus (not the trigeminal) and cause swelling of the the blood vessels around the trigeminal, putting pressure on the trigeminal and causing the pain.
And, blood does not flow through the trigeminal nerve.
Finally, please clean up your dirty mouth.



Hey Bob, having a bad day?

Marc
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« Last Edit: Jan 23rd, 2015 at 7:27pm by Marc »  
 
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Re: Helpful Hints - MUST READ!!
Reply #84 - Mar 24th, 2015 at 8:27am
 
Does anyone think pollen is a trigger? Undecided
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Re: Helpful Hints - MUST READ!!
Reply #85 - Mar 24th, 2015 at 12:42pm
 
You bet it is !!!  Pollen is a major CH trigger...  An allergic reaction to pollen also revs up the immune system and when that happens, it consumes available vitamin D3, its metabolites and the enzymes needed to metabolize it to 1,25(OH)2D3 big time.  For CH'ers on the anti-inflammatory regimen, this leaves too little vitamin D3 to prevent CH at a dose of 10,000 IU/day vitamin D3...

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It happens every year around this time and when it does...  10,000 IU/day vitamin D3 is not enough to keep me CH pain free... 

I just returned from a week in Key West, FL where I was totally PF the entire time...  I was also ramping up on vitamin D3 with 25,000 IU/day while there...  12 hours after returning home, and you can see the pollen on my pickup in the photos above, the beast was prowling big time...

I'm presently taking 40,000 to 50,000 IU/day vitamin D3 spread out over 4 to 5 doses at 10,000 IU and 800 mg/day magnesium to stay pain free.

V/R, Batch
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« Last Edit: Mar 24th, 2015 at 12:44pm by Batch »  

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Re: Helpful Hints - MUST READ!!
Reply #86 - Mar 14th, 2018 at 11:45am
 
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There are some truths when it comes to Cluster Headaches.

MOST CH sufferers are male.  MOST migraine sufferers are female.  Migraine sufferers need quiet, still and dark.  CH sufferers need activity!!!! 

Before I,  “knew anything” I could “metabolize” through an episode with VIGOROUS physical activity, which probably also took my mind off the pain.  Alternating cold and hot face splashes seemed to help

It is quite likely that CH is hereditary, but decades ago no one knew what they were.  After years of talking to friends and family, I am POSITIVE that my father had them---but they were not diagnosed back then.  He may have taken his own life during an episode.

MOST CH sufferers are current or former heavy smokers.  If you smoke, QUIT.  Chantix worked for me.  If you are suicidal or have nightmare, forget Chantix.  You are screwed.

Vitamin D levels are the real deal---have your D25 test done, particularly in winter when you are not getting a minimum of 15 minutes a day of short-sleeved sun.  Request a Test requires no doctor and cost under $30. Some advocates suggest a level of 80, others 50.  At least 50, in my opinion.  If it is down in the 30’s, you are deficient IF YOU ARE A CH SUFFERER.

Oxygen as an abort.  An anecdote: when I was “in cycle” a few sips of red wine would bring on a CH.  I was SO CONFIDENT in O2 as an abort I would swig red wine with ABSOLUTE CONFIDENCE that I could abort with oxygen, i.e., “bait the beast”.

Get on Oxygen as soon as you get a shadow.  Once a CH starts, time how long it takes to abort and stay on past that the same length of time to prevent rebound.

Most doctors know NOTHING about Cluster Headaches.

You need to suck down Oxygen at HYPERVENTILATION levels.  Strive to collapse the 3 liter bag with each inhale.

The D3 regimen is just that: a regimen, not just one vitamin.   Preferably take with an acidic beverage with the largest, highest fat content meal.

I hear people say, “Oxygen didn’t work for me”.  Perhaps, and obviously some things don’t work for everyone, and it might not be CH but a brain tumor, but I suspect that the O2 administration  was flawed.

Do not depend on your doctor or insurance company. If you cannot get prescribed O2, get it from any welding supplier (TSC, Harbor Freight, etc.). DO NOT TELL THEM WHY YOU ARE BUYING IT! If you do, they must refuse to sell it to you and you just screwed over everyone else.  You can say you weld, do metal sculpture, or need pure O2 to breed/hatch exotic fish---if they even care.

NONE of the serious meds prescribed were EVER developed for CH, but for migraines and other maladies.

Medical and welding O2 come out of the same wholesale liquid Oxygen tank.  Medical requires the tank to be flushed before filling.  Welding does not---but welding truly requires O2 every bit as pure as medical---ask a welder.  Blue versus green tank, and a different regulator fitting. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register has info on different fittings.


I suffered from episodic CH for 30 years.  NO doctor ever successfully diagnosed it.  A customer and friend watched me go into a CH, his father had them and he immediately knew what it was. Still, back then, over 30 years ago, that info was pretty useless since not a single doctor I went to knew what I was talking about.  More than one wanted to send me to a shrink.

This saved my life:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register;  And Charlie Batch.

I went to see a supposedly highly knowledgeable neurologist, a specialist in CH and he prescribed a lidocane nasal spray as an abort---more painful than the CH it was to abort, and prednisone as a prevent---a drug with HORRIBLE side effects.  I never took the pred---saved it to treat my old sled dog’s allergies and tossed the spray.

Having said that, a neurologist “should” be able to eliminate more serious issues, e.g., a brain tumor without drilling holes in your head.

Sadly, I believe some folks value the number of prescription drugs they are on. Just saying.

On June 1, 2009, I quit smoking.  That same year I got on Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; I started testing my D25.  That fall it was UNDER 30!  TWO WEEKS ON THE D3 REGIMEN AND IT WAS OVER 50!

There is a circadian rhythm to CH onset.  Mine were always May and October.

That same year I ordered my first Cluster Mask, regulator and welding Oxygen.  I got some CHs in late 2009 and early 2010, and the O2 stopped them in their tracks. Now I monitor D25 religiously; I do not take the D3 regimen year-round, only as required based on tests or shadows.

I’ve not had a CH in eight years.  As soon as I get that familiar “eye twitch” I check D25 and start D3 regimen.

Original “Monster Green” will slow the onset dramatically and allow you to get back to your O2.  Afrin spray may also help.

I was once excused from jury duty because I told the judge I needed my O2 tank close at hand.

Don’t scrimp on the mask.  The Cluster Mask is the best.  If some fool tells you that you can get a mask and bag for $5.00 instead of $25.00, ask yourself…really?

I still own three welding O2 tanks---one on each floor, in spite of no CH for years because, why temp fate?

And immediate administration of pure O2 dramatically increases your chance of surviving a heart attack with your brain intact.

Talk among yourselves!

Questions?  Comments?
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Re: Helpful Hints - MUST READ!!
Reply #87 - Mar 14th, 2018 at 8:52pm
 
Jim Tew wrote on Mar 14th, 2018 at 11:45am:
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I love this post! Thanks for reviving this thread.

I've had many similar experiences. 36 year sufferer. Highly predictable timing for the episodes. Hard to diagnose (women don't get CH) Roll Eyes. In the beginning, I could abort a pretty bad one by going running. That's how I knew they weren't migraines. My dad had undiagnosed headaches, but I couldn't get enough details from relatives. O2 only worked intermittently until I learned how to hyperventilate. Strong coffee (chilled if you prefer) drunk quickly while pressing an ice pack on the back of the scull behind the ear (on affected side) at the first sign can often halt an attack. The D3 has been quite successful for me. It's great that you can go on and off the regime as needed, but I'm not sure I can.  Question: where do you get a D25 test for under $30?

~Patti
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Re: Helpful Hints - MUST READ!!
Reply #88 - Mar 14th, 2018 at 9:14pm
 
A good post Jim, thank you for taking the time to write it up.
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Re: Helpful Hints - MUST READ!!
Reply #89 - Mar 15th, 2018 at 4:13pm
 
Hi Everyone!

Just wanted to comment on the "hereditary" issue.  From what I've been told, my Great Grandmother (on my Dad's side) had very bad headaches.  They said she would place a concoction of wet medicinal herbs in a pouch on her forehead and actually tie it around her head and wear it to get rid of her headache.   I've also been told that she was quite the "natural chemist" and had a concoction of herbs, etc. to cure what ailed you.  Hate all that info has been lost over the years. 

Also, my Dad used to have terrible migraines when I was young -- you know, the kind of migraine that makes you sick on your stomach and want a dark, quiet place to sleep it off.  So, although Dad has never had a CH he can empathize with my pain and he's very grateful he's never had one of my kind of headaches. 

Headaches, of one sort or another, obviously run in my family.  So, there may be some truth to the hereditary thing.  Very interesting learning some family history...just wish someone had wrote it all down.

Best Wishes,
Payg

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