Ok, I see a lot of people are still having questions about oxygen.  I hope this helps.  

First, go to the link on the left, Oxygen info.  Read and understand that.

Then, for hints and suggestions, go to the Medications,  Treatments,  Therapies area, and go to the thread, Tips for CH Sufferers, and then down to response #10.  That has a lot of information that is NOT listed on the link to the left.

Next, is a way to help your doctor to agree to prescribe oxygen.  It has helped a few clusterheads to get their doctor to agree.  Print out the information and drop it by the doctor’s office several days before your visit.  DO NOT expect your doctor to sit down and read information that you bring with you, to your visit.  He/she just does NOT have the time, right then, to do so.  Give him/her a break, and let the doctor prepare BEFORE you show up.

Also, explain to the doctor that you don’t need the oxygen to just increase your blood/oxygen concentration.  What you need, and what you are looking for, is the vassal constricting qualities of oxygen.  It is believed that what causes our pain is the vassal dilation, that pushes against, or aggravates the hypothalamus, which then triggers the pain.  When sucking at oxygen, at, at LEAST, 10 to 15 LPM, the vassal structures then compress, or constrict, which relieves the pressure on the hypothalamus.  PAIN GONE!

I say “at LEAST” 10 to 15 LPM, because there is a certain school of thought, of which I adhere to, that believes that an even higher flow rate works faster and more efficiently.  My regulators go up to 25 LPM, or I can connect my demand valve to it.  I won’t go into detail about these niceties, here.  This thread is to help you get set up, and succeeding with oxygen therapy.

The important thing is to get your doctor to prescribe the oxygen.  Maybe your doctor will only prescribe you with oxygen at a flow rate of 5 or so LPM, with a nose canula.  That is fine!  The important thing is to get the prescription for the oxygen.  We can help you get the other items needed.  You do NOT need a prescription to buy a different regulator, and a non-rebreathing mask.  They are not that expensive, and if you are having trouble getting what you need, there are plenty of us, on this site, that keep spares of each, just for such instances.  We would be happy to send them out.

I hope this helps you to get the all important prescription for oxygen.  The argument about using the “vassal constriction” argument seems to have done wonders for a few clusterheads that I have suggested this to.  The doctors seem to be, first, impressed that you even KNOW about that capability of oxygen, and second, can also see the logic to the argument!

Remember, if you have more questions, come in here and ask.  That is one of the main reasons for this site!  Ask away!  We want you to get PF as quickly as possible.  There are many of us that swear by the oxygen regime.  Collectively, we have THOUSANDS of hours of successful use of oxygen therapy.  We want YOU to get the benefits, also!

Even if oxygen did not work for you in the past, try it again.  Chat, call or post exactly how you are using it, and one of us should be able to help you get better results.

Good LUCK!

Chuck

OXYGEN has made a HUGE, positive impact, on my life, and most especially, the QUALITY of my life!

Good post Chuck

BE PATIENT:
I believe the reason some people don’t get the best results from O² is that they don’t stay on it long enough.

My preferred method is to count the number of breaths I take to get rid of the hit & then stay on the O² for the same amount of breaths, I can usually abort a hit with about 80 to 100 breaths but I breathe straight from the bag as I have a beard & can’t get a proper seal with the mask.
The most important thing is to be absolutely sure that you have killed the hit, no maybe’s or nearly, if you don’t ensure its gone before you do the follow up breathing there’s a good chance of getting a rebound hit & that will be even harder to get rid of than the original one.

Cheers
Barry

Hi Chuck,

I am one of the goofs that has still not tried 02.   Does aborting with 02 cause rebound HA?  (if properly aborted)

Thank you for the info.  

PF wishes!

Jeannie

Jeannie wrote on Jul 8^th, 2008 at 9:16am:

Hi Chuck, I am one of the goofs that has still not tried 02.   Does aborting with 02 cause rebound HA?  (if properly aborted) Thank you for the info.   PF wishes! Jeannie

I've never had rebound headaches from 02, but, if I do not stay on the 02 long enough, the beast will ramp back up.

Beth

bump ;)

Jeannie wrote on Jul 8^th, 2008 at 9:16am:

Hi Chuck, I am one of the goofs that has still not tried 02.   Does aborting with 02 cause rebound HA?  (if properly aborted) Thank you for the info.   PF wishes! Jeannie

No, it does not.  But the key part of your question is: if properly aborted

Too many people stop sucking on the ole O₂ once they feel it lessening, or after MOST of the pain and sensation is gone.  Stay on the O₂ for several minutes after ALL pain and sensation is gone.


Now, WHEN will YOU get YOUR oxygen??  Huh???

Chuck

My favorite topic... Oxygen Therapy as a cluster headache abortive…  Thank you Chuck…  I was hoping to be able to brief some of the following info at Dallas, but timing and the agenda just didn’t work out so here goes...  I’ll be able to reach more of you this way.  

I've been doing more research and collecting additional data on abort times as they relate to oxygen flow rates, non-rebreather (NRB) masks, and carbon dioxide (CO2) buildup and how these factors impact the effectiveness of oxygen therapy to abort cluster headache attacks.  The buzzword is hyperventilation.

In keeping with the standard disclaimer, I’ve provided the following for information purposes only.  See your doctor or neurologist for medical advice and treatment of your cluster headaches.  They’ll catch up with us at some point.
     
An oxygen flow rate of 12-15 liters/minute with a non-rebreather mask is a MUST on your prescription for oxygen therapy, as is the phrase, "AS NEEDED FOR CLUSTER HEADACHES."

In practice, 15 liters/minute is the minimum effective oxygen flow rate used by most successful oxygen therapy users – the really successful oxygen therapy users have oxygen regulators capable of delivering 25 liters/minute or higher.  Any flow rate less than 15 liters/minute, for example at 7 to 9 liters/minute, can easily result in a build up of CO2 due to the increased physical activity associated with the cluster headache attack AND the restricted respiration rate caused by the non-rebreather mask.  All this results in a situation where you cannot achieve an abort with oxygen therapy when the respiration rate is constrained by using low oxygen flow rates administered with a non-rebreather mask.

Although an oxygen flow rate of 7 to 9 liters/minute will easily result in a hemoglobin oxygen saturation at or near 100% under normal conditions, a respiration rate constrained to this flow rate by using a non-rebreather mask will result in a CO2 build up well above normal and displace or not leave room for oxygen molecules to attach to the hemoglobin in each red blood cell.  In short, while you may be getting more oxygen than normal at a flow rate of 7 to 9 liters/minute, the restricted respiration rate allows CO2 in the arterial blood steam to climb above normal levels.

It gets worse…  It's not the lack of oxygen that controls the rate of respiration, it's the level of CO2.   During strenuous activity, CO2 builds up faster in the bloodstream than it can be expelled from the lungs at normal respiration rates.  As a result, chemical receptors in the body signal an increase in respiration to reduce CO2 levels, and you start gasping for breath panting like a big dog.  

On top of that, CO2 is a powerful vasodilator.  As a cluster headache attack is associated with a dilation of the arteries and vascular structures around your trigeminal nerve, a buildup of CO2 above normal levels causes increased vascular dilation and that makes cluster headache attacks more painful and last longer.  

CO2 is such a powerful a vasodilator that even a slight increase in CO2 above normal levels will totally negate and overpower the vasoconstriction (a cluster headache abortive mechanism) provided by breathing 100% oxygen.  As CO2 levels continue to build, you start having panic attacks and become even more animated generating more CO2.  It's a vicious cycle.

The only way to prevent CO2 buildup during oxygen therapy is breathe at a rate faster than normal and with a greater tidal volume than normal.  This is called hyperventilation and requires a minimum oxygen flow rate of 25 liters/minute.  

Preventing CO2 buildup may not be possible at high Kip-levels even with an oxygen flow rate of 15 liters/minute and a properly functioning non-rebreather mask.  A higher respiration rate (and oxygen flow rate) will be needed when cluster headache attacks rise above Kip-6 to Kip-7 on the pain scale.

The normal adult respiration rate at rest is 15 to 18 respiration cycles/minute with an average of a half liter tidal volume.  Tidal volume is the volume of air inhaled and exhaled with each breath.  If you do the math, a flow rate of 7 to 9 liters/minute and a tidal volume of .5 liters, works out to a respiration rate of 14 to 18 cycles/minute.  At an oxygen flow rate of 15 liters/minute and a tidal volume of 1 liter, the respiration rate is 15 cycles/minute.  Again, even that respiration rate will be insufficient to cast off excess CO2 during a high Kip-level attack while you’re dancing around the room doing the tarantella (or Cha-Cha) and banging your head off the wall.

At this point, I can hear some of you saying…  Who is this guy and what heck is he trying to tell us and why?  

The answers are simple.

I’m an old Navy fighter pilot with over 3000 hours flying Navy jets.  All of that flight time was spent breathing 100% oxygen continuously from takeoff to touch down on missions lasting over 2 hours and on some extended mission lasting up to 7 hours.  I can also guarantee you that I would routinely suck down that 100% oxygen at flow rates well above 30 liters/minute at high respiration rates.  

I’m still here… so the safety of breathing that much 100% oxygen for periods of 2 hours or more is not an issue.  In fact, the US Navy has been requiring Navy and Marine Corps pilots flying tactical fixed-wing aircraft to breathe 100% oxygen from takeoff to touch down for over 60 years.
     
I’ve also been using oxygen therapy since I went chronic over 4 years ago and for the last two, at flow rates well above 15 liters/minute.  I’ve not used any other cluster headache medication except oxygen in the last 2 years and now routinely abort my attacks in two to three minutes.

The message of this post is equally simple.  Hyperventilation with 100% oxygen is the key to successfully aborting cluster headache attacks.  Oxygen is good and CO2 is bad.  

If you don’t believe me, watch the video of Chuck from the cluster headache documentary.  Pay close attention to the reservoir bag as it collapses completely with each breath he takes from his non-rebreather oxygen mask.  He was getting plenty of oxygen but he was unable to cast off excess CO2 with a high enough respiration rate due to the constrained oxygen flow rate.  That made the oxygen therapy ineffective and the very painful attack last far too long.

Take care.  I'm only trying to help.  'Hope to see some of you in Dallas so I can show you how well properly administered oxygen therapy works.

V/R, Batch

PETE   [smiley=thumb.gif]   dont you have more?
we need much more!!!!

Chuck tks. for the post......   [smiley=thumbsup.gif]

we all (most) use O2......

we need the know how......

Michael

Pete - My question to you: Why is it that I am able to abort almost every single attack I get at between 10 and 12 LPM, usually in less than 10 minutes? I understand the whole hyperventilation thing preventing the buildup of CO2, but I am curious as to why I don't have to jump through the hoops you've described, yet it works fine for me.

Bill

Bill,

Good question.  Although we're all wired differently when it comes to cluster headaches, the basic laws of physics and fundamental physiology still prevail in the end.  A flow rate of 10 to 12 liters/minute will work well (but not great) for an old hand like you that doesn't let an attack get you all excited.  My guess is you're calm and cool as a cucumber during a hit so don't generate much excess CO2.  And, you start your oxygen therapy at the first sign of an approaching attack to keep from getting a screamer.  You're also a non-smoker so your lungs are more efficient in oxygen and CO2 transport in and out of the blood stream.

I would also venture that a higher oxygen flow rate accompanied by a higher respiration rate would bring your abort times down to less than 5 minutes.  

The reasons for this follow:  Reducing CO2 levels below normal through voluntary hyperventilation produces a temporary physiological condition called respiratory alkalosis.  That means you're casting off more CO2 through hyperventilation than your body is producing and this results in two temporary conditions.  An elevated pH (less acid from CO2) and the condition called hypocapnia (A lower partial pressure of CO2 than normal).  

An elevated arterial pH above the normal 7.4 and hypocapnia go hand in hand to create a major case of cerebral vasoconstriction and when that occurs near the affected trigeminal nerve bundle, it helps abort the cluster headache attack just like hyperoxia.  

Sooo....  When you abort a cluster headache attack with an oxygen flow rate that supports hyperventilation, you've got three abortive factors working in your favor that all cause cerebral vasoconstriction.  (1) The obvious hyperoxia, more arterial oxyhemoglobin than normal, and (2) Hypocapnia + an elevated pH (lower arterial CO2 levels). Hyperoxia and hypocapnia work independently from each other and in combination.  Finally… (3) the combination of hyperoxia and hypocapnia/elevated pH.  This combination brings on the added effect of super-oxygenating arterial hemoglobin.  The oxygen carrying capacity of the blood hemoglobin is very sensitive to changes in blood pH.  This is called the Bohr effect.  As hypocapnia lowers the pH of the blood passing through the lungs and that in turn increases hemoglobin's affinity for oxygen, the net result is the hemoglobin in each blood cell carries up to 11% more oxygen than normal.  

It turns out that of the three physiological conditions arising from using oxygen therapy at flow rates capable of supporting hyperventilation, hypocapnia is the more powerful vasoconstrictor by a factor of two, followed by hyperoxia.   Moreover, the abortive effect of these two conditions are additive, meaning you'll get three times the abortive effect (vasoconstriction) plus the added benefit of a super-oxygenated hemoglobin than if you used 100% oxygen at a normal respiration rate.  Several studies have shown that hyperoxia plus hypocapnia also resulted in higher oxygenation of brain tissues even with cerebral vasoconstriction so there’s no real worry about cerebral hypoxia (not enough oxygen in the brain).

Again, good question.  See you in Dallas?

Take care,

V/R, Batch

Well, that certainly makes sense. I have learned over the years to stay as calm, cool and collected as I can while trying to abort. To do otherwise works contrary to my immediate goal of getting rid of the pain.

But I'm not a non-smoker. So that part doesn't fit.

Won't be in Dallas. Have fun. And thanks for the explanation.

Bill

Excellent thread Chuck, and great info!!!   Pete, as always, you make it easy to understand.

Thanks to all.

Bump.

A couple years ago, when I got hit with an unexpected monster cycle on vacation, and the hits were kip 9's and 10's, and the shadows were 7's and 8's, coming at about an hour apart and the trex wasn't working, and the O2 wasn't really doing the trick, someone here suggested hyperventilating on the O2.

I sucked that O2 at 15 LPM, as high as the regulator would go, as fast and as deeply as I could, emptying the bag with every breath. It worked. Thank goodness for that suggestion, or I would have ended up in the hospital. Hyperventilating the O2 got me through the weekend, until I could talk to my neuro Monday morning, and get a pred taper called in.

O2 works, and works well for most people, but you need to hit it as soon as you feel it start to come on. It kills the hits faster, the sooner you can start breathing it.

Good thread, Chuck.

I read the CH treatment guidelines in here. It still states 7-10 LPM. There are still things to do!

Thank you guys for your great work. :)

Sanna

Sana,

We're working on that too, but can't go into details due to confidentiality and non-disclosure agreements.

V/R, Batch

This is a great thread you guys.  Thanks.

How can we lock this thread at the top of the meds board so it doesn't fade away?

Sandy

In all honesty, is there any reason why anyone with Ch should not get O2 as a first attempt to abort.  Yes, if it doesn't work, you would abandon it, but why would any Cher not try O2 first (or at least ask for it to be the first thing you try).

If nothing else, every person who joins or visits this site should read the oxygen info section.

FramCire wrote on Jul 12^th, 2008 at 8:03pm:

In all honesty, is there any reason why anyone with Ch should not get O2 as a first attempt to abort.  Yes, if it doesn't work, you would abandon it, but why would any Cher not try O2 first (or at least ask for it to be the first thing you try). If nothing else, every person who joins or visits this site should read the oxygen info section.

Cuz we live in a pill-poppin' society, that's why.

Hello!
I have an O2 tank at home (thank god!) that is supplied to me by the goverment, so no problem there... But I want to buy myself a new mask, because the one I have is not great (the one they supplied with the tank), and I'm wondering how to go about getting one? I clicked on the link for O2 info, but it brings me to the Linde group, and they seem to be supplying only the USA...
Also, is it possible to buy a new regulator that goes with the tank? The one I used to have would let me set it to the desired flow (I would use about 13 to 15 lpm), but they have changed suppliers, and this new one only goes up to 10 lpm...
Thanks!
Jessica

jess-MTL wrote on Jul 14^th, 2008 at 2:58pm:

Hello! I have an O2 tank at home (thank god!) that is supplied to me by the goverment, so no problem there... But I want to buy myself a new mask, because the one I have is not great (the one they supplied with the tank), and I'm wondering how to go about getting one? I clicked on the link for O2 info, but it brings me to the Linde group, and they seem to be supplying only the USA... Also, is it possible to buy a new regulator that goes with the tank? The one I used to have would let me set it to the desired flow (I would use about 13 to 15 lpm), but they have changed suppliers, and this new one only goes up to 10 lpm... Thanks! Jessica

A good place to look for both regulators and masks is eBay.  You can get them fairly cheap there.

Chuck

When I am getting hit I RUN to the 02. First starting 02 I am dialed in at 18 to 20 lpm. Usually I am pretty worked up and lung capacity keeps up with this flow rate.  As the first 10 minutes goes by things calm down lung consumption falls and I find that I am turning it down to around 12 lpm for the next ten minutes, or I waste abunch.
Hope that makes sense.
I wonder if I should leave it up and try to keep up with the flow rate?
:-/ :-/ :-/ :-/

Thebbz,

Yes...  Try to keep up with the highest flow rate possible !!! The higher the flow rate and respiration rate the better.  Your average abort time should be less than 6 minutes if you're using oxygen therapy properly.

V/R, Batch

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thebb

since i can't stand to have anything touch my face during and an attack during my last cycle i stuck the tube directly in my mouth, cranked up the 02 to 25 lpm, and hyperventilated. thanks to thebbz i found a mouth piece that i can use.i haven't found an abortive  that works as good as that. i burn up a half of a bottle that way but man does it work. if i can catch it within the first 15 to 45 seconds it usually doesn't get above a 5 or a 6 and the attack lasts less than 5 minutes. if i hadn't met all you fine people up at davcon i wouldn't have my 25 lpm regulator nor would i have had the privilege of having pete explain  all this priceless information to me. and yes pete i do understand ;) i think during my next cycle i will shave my head and try that icecube abortive you were talking about. ;D
                                                                 
                                                            god bless every one of you
                                                                               johnny

Brilliant thread.

I talked to my GP about getting O2 and he was less than positive.

I'm seeing my neuro in a few weeks' time and I'll make sure he writes to my GP to tell him that I must get 02 if the need arises.

If need be I will print out some of the medical papers that recommend 02 as a treatment.

Thanks.

Ian

Mask anyone?
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all the best
thebb

Find some 02?
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thebb

Batch wrote on Jul 9^th, 2008 at 1:28pm:

An oxygen flow rate of 12-15 liters/minute with a non-rebreather mask is a MUST on your prescription for oxygen therapy, as is the phrase, "AS NEEDED FOR CLUSTER HEADACHES."

In talking with Pete, we got to discussing what the prescription should read.  The above quote is from the middle of Pete's message, and I wanted to pull it out to make sure everyone sees this.

Make SURE that the above wording is on your prescription.  Especially the words: As Needed for Cluster Headaches

Chuck

AussieBrian sent me the following information to help those of you "Down Under" to get your oxygen:


Quote:

I see people posting that they have trouble getting scripts or prescriptions for oxygen so I did a little look around to see what is available. I sense that this problem may come from doctors not knowing how to get hold of oxygen set ups outside of their own surgery environment. I have inserted some pics in this post but they may not present on the site due to my inability to post pics but if you go to the link provided you can type in the part #s and have a look. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Here in Western Australia all that is needed to get the equipment is to set up an account with BOC gasses, easily done by going to one of their outlets and simply starting one up. You can either buy the gear yourself or for the short term if you are episodic you can hire for a monthly fee a regulator & flow meter that fits the small C size bottle, you will have to pay for the oxygen and an annual rent on the cylinder you then only need the non re-breather mask that you may be able to con from ER if you know someone there. The beauty of the rental gear is that you don’t have the initial outlay cost and when you go out of cycle you just return the gear, when you return the bottle you should get a credit on the annual rental if you have only had it for a short time. Here’s the part # for the portable hire gear. It is much like the oxy viva gear you see the paramedics carrying in an ambulance. Order Code 401KITC Portable regulator & flow meter to fit C size bott

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Thanks so much for your assistance, mate!

Chuck

Edited to add:
From AussieBrian:

Quote:

It's not mine, it's Barry's!!! (Also, only part of it printed and not the link.)

Thanks, Brian and Barry for bringing this topic up.

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

(The link printed on my  computer, but if it didn't on yours, there it is again)

Back in cycle after 14 months brake, trying to get 02 prescribed at the moment, I have never tryed it before. My question is , after the 02 aborts the attack is it ok to drink alcohol or dose that bring the ch stright back again. Please say i can have a few beers after a hard days work and not get hit hard!

Best to put the alcohol aside during cycle....

I have fnally gotten my O2 at home and thank God because I'm having a heck of a time getting my imitrex injections..if I keep the O2 on 15 so far it has taken exactly 10 minutes everytime to kill the pain, much better then suffering for an hour or more. If you haven't tried it yet I would highly suggest getting some.

My husband and I just signed on to this site today and this information is absolutely appreciated!! He is talking with his Dr regarding the O2 this week, so finding this information has come at the right time! Thank you so much!!
Monica :)

purpleydog wrote on Jul 10^th, 2008 at 1:58am:

Bump. A couple years ago, when I got hit with an unexpected monster cycle on vacation, and the hits were kip 9's and 10's, and the shadows were 7's and 8's, coming at about an hour apart and the trex wasn't working, and the O2 wasn't really doing the trick, someone here suggested hyperventilating on the O2. I sucked that O2 at 15 LPM, as high as the regulator would go, as fast and as deeply as I could, emptying the bag with every breath. It worked. Thank goodness for that suggestion, or I would have ended up in the hospital. Hyperventilating the O2 got me through the weekend, until I could talk to my neuro Monday morning, and get a pred taper called in. O2 works, and works well for most people, but you need to hit it as soon as you feel it start to come on. It kills the hits faster, the sooner you can start breathing it. Good thread, Chuck.

Beautiful post this is, discovery mixed with bliss… I love the way you described the moment, thank you for sharing that. I felt the same way after I had the right stuff and a bit of help from Pete. All you guy’s ROCK in my opinion.

Notice the mouth piece is straight onto the inlet valve assembly for max flow. The best for me! I can handle 40LPM for 10 min now as I have practiced my breathing. I still wince when it spikes hard, but I can keep up with the high flow rates.

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O2 ROCKS!!!

Rolo. 8-)

My GP who works very well with me, felt he couldn't prescribe O2.  I think this was either because he had doubts about my CHs or doubts about O2's effectiveness - even with all the evidence I gave him.  I decided to fight that battle later if my CH's got worse.  One thing he did say is O2 is the same as hyperventilating.  It sounded logical to me so I tried it on a CH and, it might be my imagination, but my CH seemed to get better almost immediately.  I've had no experience with O2 but I ask those who've researched O2, Is there any difference between hyperventilating and breathing O2?  Hyperventilating makes you dizzy.  Does the O2 make you dizzy?  I'm just looking for the difference between the two.  Thanks, Brett

In a pinch, hyperventilating will reduce a hit by a few clicks, say from a 9 to an 8 or a 7. I'll still have to ride out the attack, but after 30 years, and I say this with all due respect, I have to say your doc is full of sh@@! I can abort an attack in 6-8 minutes breathing pure oxygen. I don't get dizzy, I get PAIN FREE in 6-8 minutes. Hyperventialting lessens the pain a little bit. I find the two options incomparable.

Get another doc, but get oxygen! ;)

Joe

What I got from the post from Batch is CO2 is not as good as O2.
I hyperventilate all the time when I get hit and usually just go through the normal cycle of pain while waiting for the beast to go away. I'm hoping that O2 will actually abort the pain so I won't need to wait it out.
I'm still waiting for my regulator and mask right now. Hope it works for me.
Rod

Okay, I have a tip on dealing with an insurance company that doesn't want to approve oxygen for your cluster headaches.

I'm on Medicaid, and as much as my doctors, and the home health care tried, they couldn't get Medicaid to agree to pay for the oxygen. They were told my diagnosis was 'too new'. On top of that, if I wound up on Medicare, they wouldn't even cover it, either...

Since they wouldn't pay for it for cluster headaches... My home health care company found another way to get it.

I have central apnea, a form of sleep apnea. The home health care company informed me that as long as my 02 saturation during sleep was less than 88%, Medicaid could NOT deny me the oxygen.

I told them this 3 days ago...and now Medicaid is paying for the oxygen.

I was told that they can get it for sleep apnea, COPD, and a few other problems. They might end up asking you to have a monitor on you overnight, but that's something small in exchange for a lot of relief!

I hope this helps someone else.
PFDAN
Mystina

My advice: Never admit to being a smoker. I can only speak for Scots, but even after O2 was recommended by a consultant neurologist, my GP refuses to give oxygen to me on the grounds that it is "unsafe" for smokers.

Being misdiagnosed by the medical profession is commonplace for CH sufferers, but refusing to help abort the pain after the correct diagnosis has been made and a suitable abortive found is beyond belief - and akin to sadism!

I live alone and cannot even think about trying to use the phone during a Kip10 (let alone light up a cigarette) - so I can't even arrange to get carted off to hospital when I need O2 - 3 more hours of unnecessary torture thanks to my GP.

Goodbye honesty. Lie, lie, lie, and lie again.

>:( NotAHappyChappie.

Quote:

Goodbye honesty. Lie, lie, lie, and lie again.

Please dont lie to your doctor. Get one that is right for you. Lying to your doc is dangerous. ;) ;)
the bb

To all the Aussies out there please read the post on the message board "O2 for Aussies"  for all my other Cluster friends......there must be a similar company in your country........Oxycare in Australia are FANTASTIC! :D

I do not see the yellow "oxygen" button on the side, in fact I do not have any buttons on the side.  and I am really in need of oxygen info!  can anybody help?

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I almost hate to ask but I’m a poor white boy with wife and 2 kids on a single poor boy income. How much is the oxygen setup usually? I suffer about 6-8 times a day and usually just take 2-BC powder and ice pack. Last time I was talked into visiting a Nero doc it cost about $375 for him to listen to me for about 30min & tell me if BC works use it not to mention when I got to his office. He was about an hour late and I sat in the waiting room with a kicker and by the time I got in front of him it was 90% over! Bad experience I can’t say what it thought of him and how I was cheated zip of 34104 >:(. Again I really don’t have money and hate to put it like that. But kids needed to eat. I can’t imagine average of 16-20 BC can be too good for dads health? Any suggestions?

hey everyone,

im 19 having my first attack and I was wondering how much does all the oxygen equipment cost?

WHY are doctors so hard to convince? We aren't asking for narcotic pain killers. My dr offered oxycodone and hydrocone. I don't want that!! What harmful effects can oxygen have?

None. That's the beauty of 02. If you don't lock yourself in a confined space, fill it full of 02 and then light a fire.......then there's practically no way to harm yourself with oxygen. We've made great strides in educating the medical community at large. Postings like yours show us we still have a ways to go.

Joe

sorry, were is the info we are to print for our doctor.  i'm really excited that i found out about this and can't wait to try...  thanks so much!

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Read this link. It has all the info you could need for 02. Welcome to the board! ;)

Joe

I have a questions don't laugh but is the O2 cold when you breath in?  My clusters are always in winter and even though 90% of the time they wake me up, if its a cold day i can get a moderate attack (the annoying niggly ones that you can still function with and make you grumpy)

I have found that slow deep breaths do help - but not cold air  ;D

Not really cold, when you release the pressure of compressed air, it does result in a cooling effect, that's the theory behind air conditioning compressors! So while it'll be slightly cooler then room temperature, I wouldn't call it cold air.

joe

Any gas which is compressed in a cylinder and is released will cool as it expands, be it oxygen from a cylinder or hair spray from a can. The energy used for the expansion of the gas results in the average kinetic energy of the gas falling, which results in the lower temperature. This is the basis of how things like fridges work.

Touch the oxygen cylinder after you've been using it for a few minutes and you'll notice it is cold, similarly the regulator and the oxygen tubing.

Is that Physics or Chemistry  :D

domino wrote on Dec 22^nd, 2011 at 5:42pm:

Is that Physics or Chemistry  :D

yes!!! ;D

domino wrote on Dec 22^nd, 2011 at 5:42pm:

Is that Physics or Chemistry  :D

It's simple stuff, so it must be physics.

It's pretty much based on Charles' law, although that is for a constant pressure change, but for the example it'll be close enough:

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Hi, I'm new on here & at the end of my wit! I've been suffering with CH since oct 2010 diagnosed in march 2011 had a fantastic neurologist!! Sadly the drugs are not working anymore (verapamil) my gp won't give me Sumatriptan or oxygen as these are too expensive... Have tried most over the counter drugs but nothing works... Don't know how to get my gp to prescribe something ANYTHING that will work! Any ideas???! PLEASE HELP!! I really dont want another night of waking up being stabbed in the eye & waiting to die!!

Hi Sobia

For verapamil it's possible that you may need to increase the dose you are on. Whilst most people get relief with between 360 and 480mg a day some people have to go as high as 960mg a day. But only change your dose in consultation with your doctor.

There are other preventives, like lithium and topomax. Lithium is sometimes taken with verapamil as a combination when either by itself does not work.

There is a UK based user group, Ouch UK - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - contract them (they have a helpline) and they will be able to give you some UK based advice.

Oxygen is NOT expensive! The GP is probably looking at costs associated with people who use oxygen 24x7, which does add up, but when you consider that you can abort a CH in 10 minutes or less, it works out to be inexpensive. The Ouch UK people should be able to help you get your GP to prescribe it. If all else fails, you can obtain it from BOC or one of the other companies in the UK that provide oxygen. For medical oxygen in the UK they work on an area basis. The ability for oxygen to kill off CHs in minutes is priceless. Lots of people here fund their own around the world.

Similarly for sumatriptan, you'll be meaning imigran (imitrex) injections. These work well but are expensive, with the cost of just one or two being more than the cost of oxygen for a month. However these are available on the NHS. Again ask the Ouch people.

I suspect that your GP is uninformed about the true cost of oxygen and is just trying to not spend his drug budget, which after all is intended to be spent to benefit their patients.

Whilst you're here, read posts in this forum and you'll soon learn a lot more than most doctors know.

And ask questions, we'll try to answer them.

I have just started O2 therapy (yesterday my tank was delivered)....thank goodness.  I am so thankful that I have a neurologist who has seen me through all of my episodes over the the past 10 years and when I mentioned oxygen he said that was going to be his next suggestion.  I didn't know about the O2 until I found this website (thank you).  I am crossing my fingers and hoping this bandage will help.

That's great news! I suspect you've already read it, but never hurts to review again to make sure you get the maximum benefit from the 02.

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Hope it proves the life saver for you that it's been for me.

Joe

I've been a sufferer for more years than I'd care to admit. I would say I'm more of a chronic sufferer. Anyway, the drug of choice for me has been 20mg sumatriptan nasal spray. Recently, when trying to refill my prescription Kaiser here in N. California has been having trouble with the manufacturer in getting the drug. So, I've tried 100mg sumatriptan tablets which typically is not as effective for me.  Anyway, to my point, a couple of weeks ago I had a very bad spell peaking with a trip to ER to get O2 and a stronger pain injection to stem the beast.  After about 20min after the shot and being on the O2 the pain had gone away.  It had been about 5 or 6 years since the headache required a visit to ER and again O2 was given and appeared to work. Typically, after this it has a tendency to break the cycle of headaches. Being that I go through the nasal spray pretty rapidly when I get into a cycle and the trouble Kaiser is having getting the spray I would like to try O2 therapy. I have an appt. on Wed. with my long time PCP doctor at Kaiser and would like to propose my getting a prescription for O2.  Has anyone had any luck getting Kaiser to approve a prescription for O2?

Thanks to everyone for this great resource.
Mark

I'm in Southern Cal and got Kaiser to prescribe 02 and eventually pay for it! Once my GP explained to member services the difference in cost per abort between Imitrex Injectables and 02, they couldn't wait to get me set up. They used APRIA down here for my oxygen and I have zero complaints regarding speed and quality of service.

JOe

Great. Thanks. I have my appt. tomorrow with my Kaiser dr. I told him already what I want to discuss with him regarding O2 as an abortive measure because I'm having a heck of a time getting the sumatriptan nasal spray. I also what to discuss with him the D3 treatment.  We'll see what happens.

I'm new here but I've suffered from Cluster Headaches for years.  The last 2 times I went to the Dr he gave me oxygen which was like a miracle for me.  He said he would have no problem writing me a prescription but my insurance will only cover oxygen for respitory problems.  I would possibly be ok paying for it out of pocket and I've been searching for how much the whole set up would cost but haven't been able to figure out exactly what I need and some actual hard numbers for the cost.  Can anyone answer the following?

What is the approximate cost to buy the set up (tank, oxygen, mask, etc....)?

Where do you actually buy the oxygen?  How often are you allowed to refill the tank?

Thank you in advance.  I'm so excited to have found this site and hope to find lots of good ideas to do battle with this.  I've been pain free for a mere 2 weeks (since my dr gave me oxygen therapy) and I am starting to get the pain behind my eye so I know another one is coming on.  The last time it lasted for months.  I am out of sick time and I just can't face another round of these headaches.  I swear nobody but a fellow sufferer can ever understand the devastation these cause to ones life. 

Hi and welcome

The answers to most of your questions are very dependant upon where you are in the world as it can vary between countries and between states. So please tell us and someone is likely to be somewhere near you and be able to give local advice.

However in general people get medical oxygen if they have a prescription or they will often use welding oxygen if they don't. There are normally multiple different suppliers but this is very much a case of seeing what applies to where you are in the world.

As for refilling the tank, well most people get multiple tanks and refill them as needed so they always have enough to last them a few days, especially around holiday times like xmas and Easter. So the how often will vary as to how many tanks you have and how quickly you get through them.

Once you've got oxygen to hand you'll just love being able to kill them off quickly and just get back to living life. As you say, only someone with CH or who supports them can really get an idea of just what this is like.

Hey JujuBeee,

Nothing... and I mean nothing...  gets my jaw tighter and my tail in a big ol' knot faster than hearing a cluster headache sufferer say their medical insurance won't cover oxygen therapy for cluster headache.  Better than 90% of the time that's pure BS!

What medical insurance company?  Go to their web site and search on oxygen therapy for cluster headache and cross check with your policy. 

Nearly all medical insurance companies will cover oxygen therapy for cluster headaches...  you just need to get past the idiot insurance representative who is told to deny any coverage for oxygen therapy unless all the lab tests are completed in triplicate indicating your blood oxygen content is well below normal... 

Blue Cross - Blue Shield, Humana, and Kaiser all cover oxygen therapy for cluster headaches... 

You need to be firm and be prepared to pester the living crap out of them...

If you've got an Rx for oxygen therapy, make sure it reads like the following...  If it doesn't, the idiot insurance agent has you with a "Gotcha" so send the following example to your doctor and have him/her make the changes so it reads like the following:

Rx:

"Oxygen therapy with a non-rebreathing mask as an abortive for cluster headache pain.  Administer at onset of attacks at a flow rate 15-25 liters per minute for up to 20 minutes per hour, up to 12 times per day.  Patient requires Stationary Compressed Oxygen Cylinders for Home Use – M-size (Minimum Qty 3 X 141 Cu Ft each) per month, and at least one E-size or M60 portable compressed oxygen cylinder for local travel and work per month.

Pick the appropriate diagnostic codes for episodic or chronic cluster headache and include them in the Rx for oxygen therapy:

ICD-9-CM Diagnosis Code:      

339.01 - Episodic Cluster Headaches
339.02 - Chronic Cluster Headaches

ICHD-II Code:                  

3.1.1 - Episodic Cluster Headaches
3.1.2 - Chronic Cluster Headaches

ICD-10-CM Codes:

G44.019 - Episodic cluster headache, not intractable

G44.029 - Chronic cluster headache, not intractable

Be sure to include the HCPCS:

Healthcare Common Procedure Coding System (HCPCS) Codes for Cluster Headache:

Equipment:
           E0424-E0425 Stationary compressed gaseous oxygen system

           E0430-E0431 Portable gaseous oxygen system

Contents:
          E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit

      Modifiers:
          QG - Prescribed amount of oxygen is greater than four liters per minute (LPM)"

Using the above Rx sample with the appropriate diagnostic, treatment and HCPCS codes also helps preclude confusing the Rx as being written for a COPD sufferer...

Remember, most of these bureaucrats and medical insurance company droids have a built-in bias to deny oxygen therapy...

I've found it also helps to go on the offense if you run into an oxygen provider, an Insurance company, or one of the DME  (Durable Medical Equipment) contractors who wants to change the Rx and deliver a concentrator, a LOX system or a regulator incapable of delivering a flow rate of 20 to 25 liters/minute...

All you need to do is state the following:

"Are you a licensed physician?"

"Changing a prescription without consent of the physician who wrote it, is against the law"

"There is no generic substitution for a prescription written for gaseous oxygen at a flow rate of 20 to 25 liters/minute."

And if you run into the same BS... say "Then I intend to report your failure to cover oxygen therapy for cluster headache to the State Medical Insurance Commissioner."

If all this fails, find another home oxygen provider...   or buy the needed equipment and your oxygen from a local welder's supply company...  Just don't tell them how you intend to use it... unless its for making stained glass windows or aquatics...

Now... there is one big exception... If you're on MEDICARE...  the big government social progressive bureaucratic idiots at CMS (Centers for Medicare and Medicaid Services) have ruled... Oxygen therapy for Cluster Headache is NOT COVERED unless you are participating in an oxygen therapy study...

If that's the case...  and you are on Medicare....  don't vote for any liberal progressive (communist) democrat Representatives, Senators, or Presidential candidates...  They support obamacare and just want you to die... or take a pill... then die.

Then plan to take up Oxy-Acetylene welding as a new hobby...  I have one such kit...  and I actually use it for welding since I've been on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 for the last two and a half years...

Take care,

V/R, Batch

Welding O2 is so simple.

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Thanks for the great information.  I'm located in southern California and my insurance is Health Net.

I just received a phone call from a medical supply company that they are delivering my oxygen tank later today.  I hadn't heard anything for a couple of weeks and was preparing for my fight and to get a phone call like this was such a relief.  I'm sure you all know what it's like to live in dread of these headaches.  The slightest pain in my eye sends into such despair. 

Has anyone experienced oxygen no longer working for them?  You know, how sometimes certain medications lose their effectiveness after awhile....

How does CPAP compare to straight O2 tanks? I've used the latter with success, but recently inherited a CPAP machine. Comments please! Thanks

CPAP machines are worthless for aborting CH's.  We need 100% o2.

CPAP masks could kill you.  We use NON-rebreather masks with NO headstrap and we do not sleep while mask is on.

Unsolicited advice....use a high flow regulator with the ability to provide at least 15 lpm, preferably 25 lpm to hyperventilate.

Sell the machine on craigslist or donate it to a smoker.

-Gregg in Las Vegas

LasVegas wrote on Sep 10^th, 2013 at 12:53am:

Sell the machine on craigslist or donate it to a smoker.

Or find a friend / relative who needs one. They will love you for it and so will their partner as it lets both of them get a good nights sleep.

Hi all!

I've started thinking about travelling to the USA for a long period of time to study a degree but the first thing I need to check off my list is the possibility of having oxigen there. I'm from spain and here I can get it from the public health care for free. What would be the best and cheapest option for me? I think I'll have to get an insurance that has that cover. Is that right?

What do i do once i get a doctor to prescribe me oxygen? They said it would take a week or likely more for me to get 100% pure oxygen, if they can even get it. They also said they would call me yesterday and they didn't, so i called them, and they still haven't called me back. I bet if i meet with the Dr. again i can get a written prescription (last time she said she would take care of it), if i did that which company's could i contact to get the oxygen (i assume you cant just get it from a pharmacy?)? If i could get a list that would be great, so i could see if any of them are on the covered medical equipment list for my insurance.

Where do you live?  Most of us get oxygen from a "home oxygen therapy provider."   If you Google "oxygen therapy + (your zip code)" you should get a list of home oxygen therapy providers in your area.

Most physicians know how to order home oxygen therapy and will do this for you.  It's also a good idea to get a written copy of the Rx in case you need to travel out of your area and want oxygen at your destination.

Be sure to order one of the ClusterO2 kits from the CH.com store at the left.  They work so much better than the disposable POS most providers bring with your oxygen therapy equipment.

Click on the following link and scroll down to post #5 and post #14.  These are two posts that should help explain what to do when your oxygen therapy equipment arrives...

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Take care and please keep us posted.

V/R, Batch

hi...I wanted to tell you all that I just aborted attack with some O2 therapy...literally just now.  This is amazing.  I am only able to do this because I am at work (I'm an MRI tech) and I have the O2 available.  I will be speaking with my dr. to obtain a rx for oxygen. 
Thank you SOOOO much for all the advice. 
I feel like a million bucks
til the next hit....
;D

Xthisbrain,

Great news...  Having oxygen therapy handy and knowing it can work effectively and rapidly to abort a CH... takes away a lot of the angst associated with our disorder.

Don't delay in getting an Rx for home oxygen therapy... Make sure the Rx states "Oxygen therapy as an abortive for cluster headache.  Administer at a flow rate of 15 to 25 liters/minute with non-rebreathing mask." 

Order one of the ClusterO2 kits from the CH.com store tab at the left side of this screen.  They're great!

Also, be sure to ask for a lab test of your serum 25(OH)D.  This is the metabolite of vitamin D3 that's used to measure its status...

Check your PM Inbox at the upper left corner of this window...  Click on "you have 1 new message"  I've sent you some additional information.

Take care and please keep us posted.

V/R, Batch

Recently moved from Florida where prescription was not needed.

Now my 02 supply ran out and my neurologist refuses to give me a prescription and I am in serious shyt.

Im to the point of taking a road trip to Florida to get my tank refilled. Anyone know of any other states that do not require prescription on the east coast?
Thanks in advance

Some people use welding oxygen instead of medical oxygen.

Ir0ck,

If you've a reasonably current diagnosis of cluster headache in your medical records and your present neurologist refuses to prescribe oxygen therapy, print out a copy of the following link and take it to him with a promise of malpractice suit if he fails to give you an Rx for oxygen therapy for your cluster headache.

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As you'll see, oxygen therapy is the first abortive of choice with a Level A rating in medical evidence as an abortive for cluster headache.

In the mean time check out the following links.  You're very likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.


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Take care,

V/R, Batch

Batch, Thanks for the reply and the link. I will email my doc the following link.

I started your d3 regimen about 3 years ago and it was a real life savor for me. However, this time I am about 3 weeks in and it seems to not be helping.

What has worked for me the last 3 years to this point is 15,000 ui of D3 per day with lemonade, fish oil, calcium, magnesium. I possibly missed the k2 and zinc so so I am going to start that right away. Recently I started taking 5,000 mcg of B12 per day and within the last few days I stopped taking them because I thought it might not be helping my condition.

I go back to see my doc on feb 7th but time is my enemy here. This is affecting my work and my life and the pain is so horrible I am ready to take the trip to Florida today to get my o2. Unless I can find a state closer.

I will be following your advice here but in the meantime I am in serious need of o2.

thanks for all your help

Mike NZ wrote on Jan 17^th, 2015 at 12:16am:

Some people use welding oxygen instead of medical oxygen.

Thanks for this. Do you know if they will require different cylinders or will I need a different kind? and in the case they require a welders cylinder will I need new regulators?

ir0ck wrote on Jan 17^th, 2015 at 9:09am:

Mike NZ wrote on Jan 17th, 2015 at 12:16am: Some people use welding oxygen instead of medical oxygen. Thanks for this. Do you know if they will require different cylinders or will I need a different kind? and in the case they require a welders cylinder will I need new regulators?

I've only ever used medical oxygen here in NZ or Australia.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - this has a load of info about oxygen.

Also use the Google site search (top left of the page) and look up "welding oxygen" for a load of info.

Hello all-  Im having a hard time finding the right regulator for my tank, I have the DISS or M ?type conncection, but the ones Ive seen on  Ebay dont look like they come with the coupling I need to connect it.  Anyone can direct me?  Thank you.

Hey RDAtl,

I think you'll find answers to most if not all your questions in the yellow tab titled "oxygen info" at the left of this screen.

If you've still got questions, shoot me a pm.

Take care,

V/R, Batch

Hi everyone,My name is Emma,I'm from Ireland. I'm new to the website,this is my first post.Sorry I know I should be writing this in a different section its just I was hoping someone here might know how to get o2 prescribed in Ireland. Ive had ch(episodic)  15years just recently being diagnosed last month after years of being told migraine,sinsus,bruxism etc ::). I found this website and have been practically stalking it ever since. Finally knowing what is happening to me is such a relief but terrifying at the same time. I thank god I found this website,just reading everyones stories has helped.Its comforting to know your not alone. My doctor has been great,although the meds (amitriptyline) have not worked for me yet.He also gave me sumatripton nasal sprays,they work but only if I use them at the first sign of an attack but at my appointment last week he said its not ok that Im using the sprays twice a day,I asked about o2 and he just dismissed it.He did however arrange an app with a specialist in the hospital for me,its in 4 days so hopefully I will have some luck then. I'd be grateful for any advice ye might have.I am 53 days in now,longest ever.Thanks :) x

Hey Emma Marie,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way.

You need to contact OUCH(uk) Helpline at 01646 651 979, explain your situation and that you need help in obtaining home oxygen therapy.  They know the ropes, tricks and procedures to obtain home oxygen therapy from your NHS so will point you in the right direction.

You'll also need to fill out the attached HOOF and have your PCP sign it.

I'd also suggest you check out the following link for the anti-inflammatory regimen with 10,000 IU/day vitamin D3.  This regimen is very effective in preventing CH for over 80% of the CH'ers who start it.

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The "How To" part in starting this regimen is half way down the first page so scroll down... 

We have CH'ers in Ireland presently taking this regimen to prevent their CH...  Perhaps I can get one of them to get in touch with you as they have figured out how to obtain the needed supplements.  I'll shoot you a PM with some additional information that may be helpful.

Take care and please keep us posted.

V/R, Batch

---

Hi Batch,Thanks for the advice  :) I didnt realise OUCH would help me,( Im in republic of Ireland) Its def worth a try :) I have read nearly the entire link on 123 days pain free,I went and bought all the sup,except the vit k,there really expensive,one month supply of the supp cost me over 80euro so ya it would be great to hear from another Irish person about where their buying theirs :) :)thank you :)I plan to start the regime Monday after my app.Im going to try get the vit D test done before I start.Thank you again Batch  :)

Hi Emma

The OUCH UK helpline should be able to help as Google can find where someone from the Irish Republic has had call backs from the helpline.

There are also some other people with CH here on the forums. I'm hoping you'll get a response from someone local who will be able to give you info on what works in Ireland.

Some of the D3 items can be expensive, but a lot of people from around the world have sourced them online and imported them, saving a lot of money in the process, with iherb.com being a commonly used site.

Amitriptyline can work as a CH preventive. It was the first one I used, although it is often not as effective as some of the others, like verapamil.

Do push all you can to get oxygen. It is amazingly good at killing off CHs. Read up about how we use it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Keep reading all you can here so you can learn as much about CH as possible. This will help a lot when you see a specialist in 4 days (lucky to get in so quick).



Batch - the NHS doesn't operate in the Republic of Ireland, only in England, Scotland, Wales and Northern Ireland. So the bit about a HOOF form won't apply there.

Hi Emma, just posting a quick note here for now as i'm about to go out the door.
I'm in Galway, i'll be in touch with you later today.
There are ways of getting the D3 regimen for a lot less than €80/month.
You've come to the right place, clusterheadaches.com and it's users/posters are a god send.
The D3 regimen has helped/is helping a lot of people, including me.
Hope you have a good day.  :)
All the best
Thierry

Hi Emma, I got the neurologist in UHGalway to prescribe the o2 to me. When I asked him for it, he said that he had to find out if i could get it with my medical card, he also wanted to further research the efficacy of O2 before he would prescribe it. A couple of days later i received a phone call from a guy that was on his way to deliver a couple of O2 tanks to me, I also asked that guy to provide me with a couple of non-rebreather masks, which he duely did. I was delighted that it came very quickly. Maybe you can find an understanding neurologist in your local hospital and ask for O2, if he/she knows about CH, they should prescribe it for you. I am not sure as to how it is covered by a health insurance or not, nor do i know what it costs if you are going to have to pay for it all yourself.
O2 is great for abborting an attack, the earlier you get the mask on, the quicker the relief will be. If the pain is already quite high when you strat inhaling the O2, it can take 5 to 10 minutes to start feeling relief.
There are times when i had an O2 bottle constantly by the bed, and it has aborted many attacks.
As regards chatting about the D3 regimen and where to get the components for less, i suggest that we do that on another thread as this one has an O2 topic.
We could talk about the D3 regimen in the "123 days pain free...." thread if that suits you.
All the best

Hi Emma,

I sent you a PM this morning with my number. Give me a call whenever you wish.

Keep well,


Peter.

Hi :)
Thanks for replying to me guys :)and Mike thanks for the pm with the links to the ch research and for introducing me to Thierry and Peter.Its great to hear from other Irish people about their experience.Ill print some of the info and bring it with me to my appointment Monday. Thierry I also have a medical card so its such a relief to know I can get the o2 with that :)One less thing to worry about,now just to convince them to give it to me.Everything is just so overwhelming at the minute there is just so much information out there so thank you all for making it easier for me. I really appreciate it  :)

Hi Emma,
I've replied in the "123 days PF" thread, page 92.

Thank you Thierry :)

Hi guys, Just letting ye know how my appointment went today.

When my GP said specialist what he should have said was whatever consultant is working that day. In my case it was a gastro specialist. He never even heard of CH,tried to say it was a type of migraine, I showed him my headache diary that I have being keeping since February which logs date,time,duration,symptoms and pain level of each headache and he could not explain why they come in clusters that I could set my watch to and why they last short amounts of time(in comparison to migraines)  That is when he said he was a gastro specialist and said he would send a letter of referral back to my doctor for me to see a neurologist.But it will be at least a 12month wait with my medical card,I said I would pay to be seen sooner. The nurse that was there was amazing(her friend has CH)so she knew more than the doctor,although never heard of 02 treatment,she said not to waste my time with the neuro I was being referred to that she wont listen to me about 02 or the vit d, her advice was if i am willing to pay, go to a neuro who is already treating someone with ch.So I was hoping Peter and Thierry that I could have the name of one of your  doctors? I hate to ask but I am desperate. My partner and I are not in a position to do it based on trial an error, we just don't have the money. Not one doctor or nurse that I spoke to today had heard or agreed with 02 being given to CH suffers.What was said to me at one stage was "there are 5 other people in this room today,all have headaches none of them request oxygen to help them"At that stage I broke down,explained the damage CH is doing to my life,I said I have a two year old son,the best they could do was arrange an MRI for me.which I guess will be an advantage when I see a neuro. I should have known it was too good to be true, getting everything sorted out so quickly.

On the plus side from today my CT scan etc all confirmed I do not have a brain tumor lol  :)

Thanks again guys

Emma,
I sent you a PM.

Peter.

Hi Emma

It doesn't sound like the best you could have expected for, but when you look back at it there are some positives:

• At least the specialist admitted that he didn't know things, so you didn't get a misdiagnosis.
  
• You showed how much you have learnt, which is a great benefit to you in getting the right treatment. Just think of the difference of knowing what to ask for (e.g. oxygen) gives you over people just wanting the doctor to do everything. So much about CH is having the right knowledge and pushing to get things to happen.
  
• You have been put on the process to see a neuro. Now just a case of getting to see one with the right knowledge and experience of CH. I see you've been trying to find who other CH people in Eire see, so you're on the right track here. Even if they are at the other end of the country, a long drive will be worth it.
  
• A 12 month wait sounds long, but chase up on cancellations, that might cut is shorter. But paying to jump the queue might be worthwhile once you've identified the right person to see. It isn't just about the money, it is about seeing someone who can help cut back the impact that severe headaches have on you.
  
• The CT scan ruled out some potential causes of the CH symptoms which would need urgent treatment.
  

Sometimes it is about seeing where you've stepped forward rather than seeing where things haven't gone perfect to how you wish they had done.

Hey Emma, Like yourself, I' m delighted to hear that you don't have a brain tumour.
Sounds like a fairly typical day with the Irish health system  >:(     sorry to hear that you had to endure it in such a way.
Is never any problem asking for info, keep throwing the questions you might have.
Sending you PM

Hi guys,
Feeling a lot more positive today, Thanks to ye :)
Mike you are definitely right, 6 weeks ago before I found this site I didn't have a clue about 02 as a treatment (among other things)all I had was my bag of frozen peas!! :), thinking about that makes me very grateful for the position I am in now. The nurse in the hospital told me I was in for a long battle so I am trying not to dwell on the bad anymore and get organised/PERSISTANT lol :)
Thanks Thierry for the pm with your doctors info, I plan to ring first thing in the morning :) Peter also is helping me with his(thanks again Peter).

I already feel like I couldn't live without this website, ye are an amazing bunch of people  :)

Emma Marie,

What did the people at the hospital say when you handed them a copy of the HOOF...  the NHS Home Oxygen Order Form?

The sample screen shot clearly indicates Home Oxygen Therapy is available for Cluster Headache

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

I can understand that none of the medical people you spoke with were familiar with cluster headache...  We're talking about a rare, orphan disorder...  Accordingly, there are a lot of neurologists who are clueless when it comes to cluster headache as well.

Ignorance of cluster headache not withstanding, one would assume the medical professionals you spoke with are capable of reading and comprehending English in the above form...

I've attached another copy of the HOOF... Click on the title at the bottom of the page to download it to your computer.

Contact BOC Healthcare Ireland at the following link and ask them for the fastest way to obtain home oxygen therapy as an abortive for cluster headache:

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

Take care and please keep us posted...

V/R, Batch

---

Batch - Emma is in the Republic of Ireland which is not covered by the NHS which only covers England, Scotland, Wales and Northern Ireland. So the HOOF form does not apply.

Mike,

You're quite correct...  the NHS HOOF only works in Northern Ireland... 

That said, I've checked some of the Health Service Executive (HSE) Republic of Ireland web sites...  They have a similar HOOF that covers the use of home oxygen therapy.

I've also checked the Baywater Healthcare web site on home oxygen therapy and came up with the following link that clearly states home oxygen therapy can be used for cluster headache.  See the following link and also attached below in pdf format:

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

I've worked with BOC and their parent company, the Linde Group Healthcare Systems in Germany on the use of home oxygen therapy as an abortive for cluster headache since 2007.  As of 2009, home oxygen therapy was approved and covered as an abortive for cluster headache by National Health Care Systems in Germany, Austria, Switzerland, Norway, Sweden and the UK including Northern Ireland.

It appears the Republic of Ireland HSE does provide home oxygen therapy for cluster headache... The problem now is finding a doctor within the HSE who knows about cluster headache and the use of home oxygen therapy as a CH abortive...

Take care,

V/R, Batch

---

Jaysus Batch, good on you, you know as much about the HSE as some of us here in Ireland  :).
Emma, have you talked to your GP about getting O2, maybe he/she can prescribe it to you.
There is another way of getting O2. O2 is used by people who weld. It is possible to purchase an O2 welding bottle. It works like the gas bottles, you purchase an empty and pay to get it refilled when needed. When buying the O2 bottle, you would also need a regulator, up to 25 litres/minute if possible. All this doesn't come cheap though but you might have a friend that does metal work that might be able to help.
Anyway, soon enough, you will likely hardly need the 02 as you have started on the D3 regimen. I still have the O2 but don't use it much at all. Just a couple of times/year when some shadows show up.
What are you currently taking for the CH? Did your doc give you Zomig?
All the best
:)

Hi guys,

Wow Batch thank you for taking the time to find all that information :) I will take a copy of the Baywater Healthcare pdf with me to my next doctors appointment.

I did mention the 02 to my doctor a few weeks ago, he just dismissed it. I was still just learning everything for the first time so I just let it go.

My first appointment after my diagnosis I was given 10mg amitriptyline. Then the following week after doing some research I went back with a print off about 02 and sumatripton injections. He decided then to put me on 25mg amitripyline and he gave me the sumatripton nasal sprays(they do work but they take about 20mins and I only have 6 for the week :(). I will ask for the 02 again on Tuesday at my appointment. Peter has looked in to it for me as well and if I can get my GP to write the prescription I should have no problem getting it :). Thierry I actually have a friend who is a welder, so thanks for letting me know. I will defiantly call him if it doesn't go well with my GP. Or the Vit D might start working for me (day2 now) and at least then I wont be too dependent on getting the 02.

Thanks again Guys :)

Great post. Wish I had read this before my doc appointment where when I asked about oxygen, it was dismissed. :(