I am a supporter who has been following this site for quite a while now.  My husband has these terrible headaches.  He is currently taking verap at I think 300 mg twice a day.. Lithium at 300 mg twice a day with Imitrex (capsules)as an abortive.  I was able to talk his Dr into prescribing the O2 therapy last Friday (before we try the Canadian route).  The only regulator they had in stock was the max 15 LPM but they have ordered the 25 for us.  Here are my questions:

When do you know "when"!  He has tremors all day long how do you determine which one is for real!  He has tried it with his tremors and they subside but to only come back with a vengeance when the headache hits.

He is trying the hyperventilating approach - he is using the mouth piece (he has a beard).  he knows that he is suppose to only breath in O2.  I see the bag filling and releasing, but he says he physically can't continuously hyperventilate.  We are not seeing any results yet other than the vengeance later in the night after his O2 "tries".   Which leads me to the next question...

Night hits- when he wakes he is already in full swing.  The O2 can't help then can it?  It's too late right?   he says it is easier to take a Imitrex, lay back down and try to get back to sleep.

I know.... getting lengthy!  I'll stop here... Any help or advise you can provide would be very much appreciated!

P.S. We are still waiting on the 25 LPM regulator...  But afraid that may not help if we aren't doing something else right.  :-X

Thanks!

Nancy
Huddleston, Virginia

G'day Nancy and welcome. Just over on the left of your screen should be a big yellow button marked 'oxygen info' which will likely give you a lot of help.

Otherwise just stick with us because there's others here who are experts on the subject and only too happy to assist.

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Nants wrote on Mar 15^th, 2011 at 1:50pm:

When do you know "when"!  He has tremors all day long how do you determine which one is for real!  He has tried it with his tremors and they subside but to only come back with a vengeance when the headache hits.

It's hard to describe exactly when it the right time. For me, I just know when it's time, which seems to be as the pain starts to ramp. What he needs to do is to experiment and to find when is right for him. Sometimes at first this might be too early or too long, but in time he'll get to know better and better what works right for him.


Nants wrote on Mar 15^th, 2011 at 1:50pm:

He is trying the hyperventilating approach - he is using the mouth piece (he has a beard).  he knows that he is suppose to only breath in O2.  I see the bag filling and releasing, but he says he physically can't continuously hyperventilate.

Again, practice helps. I find it a lot easier to do this at 25lpm than at 15lpm when I am constantly emptying the air bag. It also helps to stay reasonably still (not easy I know) as this also helps to cut down how much CO2 your body is generating.

Hi Nancy, welcome to CH.com. For the best results with O2 it must be started at the first sign of pain this goes for the night wakeups too. The higher the pain level when we start O2 the longer it takes to abort, which can lead to abort failure.

Any outside air, like thru the nose when using a mouthpiece can defeat the abort, also when exhaling, exhale as completly as possible and more. Hyperventilating does speed aborts, but before I knew about it, I would take as deep a breath of O2 as I could, then concentrate on exhaling as much CO2 as I could, this helps.

Imitrex pills are of little use for CH, they are too slow to take effect, which for most of us means the attack is too far gone, when they do. We need Imitrex injections or inhalers in that order.

To "lay back down" is not possible for most CH sufferers during the pain. (??) Has your Husband taken the "cluster quiz" on the left side of this screen? If you don't see it, it's where you click on the "message board".

The O2 mask or mouthpiece setup is important, please read thru the link VietVet2Tours has given you, it's long but very informative.

Hope this helps,  Don

Quote:

He has tremors all day long how do you determine which one is for real!  He has tried it with his tremors and they subside but to only come back with a vengeance when the headache hits.

Tremors?  Is this your name for it, or does he actually have some kind of physical shaking which may be indicative of something quite other than CHs?

Thank you so much everyone for your advise!  Just to clarify... He has not been much of a walker / pacer when these things hit - Don't know why.  Plus he likes the hot rags instead of the cold.  His first time was ~5 years ago... His cycle started again on 01/27.  We have certainly read all of the wonderful O2 info in the attachment.  This is what I faxed to the Neuro to persuade him to try the O2.  The oxygen supplier (Lincare) has told my husband they have never heard of 25LPM and that it wasn't possible to inhale more than 15!  Thanks for that!  Now he is very skeptical.   >:(   Still pushing them to get the 25LPM regulator in anyway!  I think the tremors that he has is what you guys are calling shadowing.  Sorry not use to the CH terminology yet.    ;) Plan B is to show him myself how I think the set up should be used... since I am the one who has been reading all of your wonderful advice!   

Also saw the thread on 15,000 of D3.  We started that right away.  This will be his second day.. Has had two major attacks the past couple of nights. Will post to that thread if we see any relief.

Thanks again for your time!  And I wish everyone relief from this terrible monster!! :'(

Nants wrote on Mar 15^th, 2011 at 1:50pm:

He is trying the hyperventilating approach - he is using the mouth piece (he has a beard).  he knows that he is suppose to only breath in O2.  I see the bag filling and releasing, but he says he physically can't continuously hyperventilate.

Hi Nancy
Like your hubby I have a beard so I breathe straight from the bag & exhale through my nose; I am not able to sustain the hyperventilation for any length of time & the bag fills too quickly at 15 l/m after a while so I then turn the regulator down to 10 l/m which is closer to my normal breathing pace & continue breathing at that rate for the remainder of the time needed.
I count the number of breaths it takes to abort the hit & then breathe the same number of breaths to ensure I don’t get a rebound hit, this method hasn’t let me down since I found out about o2 as a weapon & counting tends to take your mind away from the pain (well for me it does).

Quoted from the OXYGEN INFO:
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."
- Barry

I also am not a walker when getting hit but I cant lay down, it should also be noted that the more you move around the greater amount of o2 you will need (walking pace doesn’t require the same amount of air as running needs as an example) if you are able to maintain control & not become anxious or distressed you will require o2 at a lesser rate than if the heart rate increases through anxiety or excessive movement.

Seriously consider Batch’s thread on D3, I have been taking Magnesium/Calcium with D3 since late 2006 & have been able to get lengthy periods of remission from high cycles, but I will post more about that in Batch’s thread.

Hope this helps
Cheers
Barry

Thank you so much Barry!  He is having the same issue can't breath all of the air in.. Feels like he is wasting it.  We will dial down the guage tonight and see what happens.  Thank you so much for the valuable information!! :)

Hey Nancy,

Welcome aboard.  I've spoken with many supporters in your shoes and what you are going through with your husband's cluster headaches is the toughest of times.  Hang in there...  The good news is the situation will improve once your husband finds the right combination of treatments to gain control over his cluster headaches.

Trying to hyperventilate with one of the disposable non-rebreathing oxygen masks equipped with a 1-liter reservoir bag at a flow rate of 15 liters/minute is impossible.  I've tried it many times to no avail.

You should have the 25 liter/minute regulator shortly if not already.  If you've not already ordered one, your husband is going to need one of the $27.50 O2PTIMASK™ kits with a 3-liter reservoir bag from the CH.com store at the left.

An oxygen regulator capable of 25 liters/minute flow rates and the 3-liter reservoir bag on the O2PTIMASK™ kit will help improve the effectiveness of oxygen therapy for your husband as it will easily support hyperventilation with 100% oxygen. 

The O2PTIMASK™ kit will also reduce the effort of breathing as it allows your husband to fill his lungs completely with each breath of oxygen without any restriction/resistance or needing to wait for the reservoir bag to fill.

Your husband needs to understand that oxygen therapy for cluster headaches is not a relaxed or passive act.  If he wants to stop the CH pain rapidly, he needs to breathe the 100% oxygen like a big dog that just got done chasing a car.  As long as your husband has normal cardiopulmonary functions, he should be able to use the following procedures and breathing techniques.

The best and most effective breathing technique involves breathing at forced vital capacity tidal volumes.

This entails a breathing procedure and technique where you stand to give the diaphragm a full range of motion, open your mouth and drop your jaw like saying the word "Haw" as you exhale and inhale.  Exhale forcibly and when it feels like your lungs are empty, do an abdominal crunch like you do during sit-ups.  Hold that abdominal and chest squeeze until you hear your exhaled breath make a wheezing sound for a couple seconds then inhale rapidly until the lungs are completely full then repeat. 

This procedure and breathing technique will squeeze out an additional half to full liter of breath each time you exhale, hence the term "Forced Vital Capacity."  As end tidal flow of breath leaving the lungs also contains the highest CO2 concentrations, using this breathing technique will pump CO2 out of your circulatory system through the lungs much faster than your body generates it through normal metabolism. 

Using this procedure and breathing technique with 100% oxygen is hard work and yes, your husband will get tired.  We all do when aborting cluster headaches at the higher oxygen flow rates. 

However, once your husband learns that he can make the pain go away very rapidly using this procedure and breathing technique, he will find this method of oxygen therapy well worth the effort. 

BTW, I can collapse the 3-liter reservoir bag on the O2PTIMASK™ kit very easily at a flow rate of 40 liters/minute and sustain this flow rate for the 5 to 6 minutes it takes to abort a high kip level cluster headache.  I can also collapse the reservoir bag at a flow rate of 60 liters/minute for up to 10 seconds before I get pooped out and need to slow down. 

The reason for using this procedure and breathing technique is simple once you understand that there are two parts to successful oxygen therapy when it's used to abort a cluster headache:

hyperoxia - elevating arterial oxygen saturation to 100% and hypocapnia - reducing arterial carbon dioxide (CO2) levels below normal.

This is accomplished by intentionally hyperventilating long enough to pump out enough CO2 to reach a condition called respiratory alkalosis.

You'll know when you've reached this condition when you start feeling the symptoms of paresthesia - a slight tingling or prickling sensation of the fingertips, lips, or back of the neck.  You may also experience a sensation of dizziness.  If you feel too dizzy lean against a wall and keep on huffing and puffing until the pain is gone.

I've used this procedure since 2005 to abort my cluster headachs and have yet to fall or pass out...

You and your husband can practice this procedure and technique breathing room air as a form of training to prepare for the next cluster headache.   Both of you should start feeling the symptoms of paresthesia after three to four complete breathing cycles.

Once your husband has felt and recognized the symptoms of paresthesia during this training session, he'll know how to adjust his respiration rate with 100% oxygen to maintain it.  This is the fastest way to abort a cluster headache with oxygen therapy.

That a few folks at Lincare have never heard of an oxygen regulator capable of 25 liters/minute is understandable.  However, saying we can't inhale 100% oxygen faster than 15 liters/minute is an old wives tale that is totally wrong and not true! 

15 liters/minute is the maximum flow rate presently listed in the available medical literature as an acute treatment for cluster headache.  That will soon change.  At least you've educated them and they now know regulators like this exist and are used during oxygen therapy for cluster headache.

I'm an old Navy fighter pilot and have over 3000 hours flying Navy fighters.  All of that flight time was spent breathing 100% oxygen from takeoff to landing on missions averaging 1.8 hours in duration with some extended missions lasting up to 7 hours.

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Yankee Air Pirate, USS Hancock, Tonkin Gulf - circa 1971

I can tell you first hand that I would routinely suck down 100% oxygen at flow rates in excess of 25 liters/minuet on every flight involving air combat maneuvering at high G-Forces.

Over 125,000 Navy and Marine Corps pilots flying fixed-wing tactical aircraft have been breathing 100% oxygen like this since 1941 and they still do it today. It's a mandatory requirement.

We all must pass an annual flight physical with PA and lateral chest X-rays to remain in a flight status and in all that time, there have been no reports of any adverse events from repeated exposure to breathing 100% oxygen at significantly higher flow rates than traditionally prescribed for cluster headache so breathing 100% oxygen at flow rates greater than 15 liters/minute is very safe! 

You could easily call this the largest retrospective study of it's kind on repeated exposure to breathing 100% oxygen.  I'm still here a 67 and in excellent health as proof.

We computed the oxygen consumed on several flights from the ship where we conducted Air Combat Maneuvering (Dog Fights) for at least 15 minutes out of the 1.8 hour flight by weighing the 5 liter LOX Dewar before and after each flight.  From the LOX consumed we computed an average oxygen flow rate of over 25 liters/minute so peak flow rates were easily in the 35 to 45 liter/minute range during the dog fights.

Good on you for having your husband try the vitamin D3.  10,000I.U. should be a sufficient therapeutic dose.  See the attached pdf file.

Taking 2,000mg. to 3,000mg. of the Omega 3 Fish Oil and a couple of the calcium citrate tablets formulated with vitamin D3, magnesium and zinc along with the vitamin D3 will help even more as a CH preventative.  Please let us know how this regimen is working for your husband one way or the other.

Check you PM for more information on the above method of oxygen therapy and the anti-inflammatory regimen above.

Take care,

V/R, Batch

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