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

Apr 28^th, 2024 at 3:22am

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › New here, not new to this.

(Moderators: DJ, Mrs Deej)

‹ Previous Topic | Next Topic ›

Pages: 1

New here, not new to this. (Read 1828 times)

PatM

CH.com Newbie

Offline

I Love CH.com!

Posts: 2

New here, not new to this.
Nov 29^th, 2016 at 5:53pm

Well, where to start? Have been suffering with chronic clusters for about 20 years, undiagnosed for about 17 of them. Diagnosed finally by a good family physician who referred me to a headache management and assessment clinic. Fully diagnosed by the neurologist's there.

For most of the time they were not too bad, relatively speaking. 2-3 days a week with a couple a day. After a very successful run on Topirimate which ended with me passing a kidney stone out in the field at work, they took me off of it, shortly thereafter, they became extremely frequent, 2-5 a day 6-7 days a week.

I am in Calgary alberta and have been through a mass regimen of "spaghetti" medicating. Throw things at it until something sticks. Verapimal @ about 480 mg is the latest. Lithium made it up to 300mg but the issue with it was it was playing havoc with my thyroid. Topirimate as mentioned. Imitrex pills did nothing, the nasal spray I never tried as at the time it was contra-indicated with what I was on. Vit D daily for various reasons including us Canadians are chronically low. The imitrex injections are prohibitively expensive especially with the frequency, even with coverage they would not be paying 400$ a day to supply me, even with the trick of halfing doses, 200 a day is out of my reach.

I work as a medic, so medically speaking I am somewhat knowledgeable. I have high flow oxygen via a generator, 11 lpm is the highest it goes and sits at about 96% o2 output with a non-rebreather mask.

I have been through a few other meds which I cannot remember, probably have half full scripts sitting ion my cupboard I could look at.

The reason I am here, my treatment options are fairly covered, it is looking towards possible surgery at this point as I am exhausting medication options. I am sure I am rambling but in my "headache hangover" phase.

The pain is like a nailgun loaded with a railroad spike fired into my right eye, exiting my temple, then someone loops the ends and hangs me from it. At it's worst, thankful the "10" headaches are not as common as the 7-9. Abortive measures, o2 helps, ketorolac helps combined with Tylenol, mostly they round off the sharp edges. For the worst of them, Percocet does not seem to dull the pain as much as make me care about it less, if it makes sense.

They last from 1.5-3 hours, I seem to be atypical in the fact I was have never been a pacer or walker. It tends to agitate me, but I have no need for the pacing or thrashing typical. Swearing and extreme anger tend to accompany them for me. Or at least extreme irritability.

I think in the end, it is just nice to know others know what it is like.

IP Logged

Click Here to visit the CH.com Facebook page!

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3706
Bremerton, WA
Gender: male

Re: New here, not new to this.
Reply #1 - Nov 29^th, 2016 at 11:23pm

Hey Pat,

Welcome to CH.com. We know what you’re going through and the good news is it doesn’t need to be that way. There are a few very safe and very effective ways to control your CH without all the side effects you’ve experienced with the classic CH prevents and abortives.

I’ve sent you a PM with some info on one of the prevents that’s proven to be very effective. Since 2010 over 600 CHers have tried it and better than 80% of them achieved a significant reduction in the frequency, severity and duration of their CH within the first 30 days... The majority of CHers experience this relief in less than 10 days to two weeks. 54% experienced a lasting pain free response.

Regarding a very effective method of oxygen therapy that aborts CH in an average of 7 minutes. As a health care professional, I think you’ll like this method.

In researching why oxygen regulators with flow rates high enough to support hyperventilation and oxygen demand valves were more effective with shorter CH abort times than a constant flow regulator at 15 liters/minute, I found that lowering serum CO2 was a key component in obtaining fast and reliable CH aborts.

A lower arterial CO2 content elevates the arterial pH (more alkaline) and this is a more powerful vasoconstrictor than oxygen even at 95% purity from the oxygen concentrator. The elevated alveolar pH enables blood hemoglobin to upload roughly 15% more oxygen so this turbocharges the blood oxygen flow to the brain to help make the abort even faster and more reliable.

Around 2011 I developed a new method of oxygen therapy called Hyperventilation and Oxygen Therapy that has proven to be just as effective as a 40 liter/minute regulator or an oxygen demand valve in delivering rapid and reliable CH aborts.

This method of oxygen therapy essentially calls for hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by the inhalation of a lungful of 100% oxygen that's held for 30 seconds before exhaling into the room and repeating the hyperventilation with room air.

You keep repeating this complete sequence until the CH pain is gone... usually in 4 to 7 sequences (Minutes).

Hyperventilating with room air accomplishes the same thing as hyperventilating with a regulator set at 40 liters/minute or an oxygen demand valve except it uses no oxygen. The only oxygen consumed with this method of oxygen therapy is the inhaled lungful ~ 4 liters, that's held for 30 seconds.

This method of oxygen therapy consumes roughly 4 liters of oxygen a minute and results in an average abort time of 7 minutes for a total of 28 liters of oxygen per abort. That's roughly a tenth the amount of oxygen consumed with each abort with an oxygen demand valve or high flow regulator set at 40 liters/minute.

An explanation of this method of oxygen therapy follows:

Start by standing to give your diaphragm full range of movement... This is important as standing during this procedure helps ventilate the lungs more completely. Lean against a wall if you get dizzy while using this method of oxygen therapy. If you get too dizzy, sit erect in a chair.

The next step is exhale forcibly through your mouth until if feels like your lungs are empty... they're not! Do an abdominal crunch like doing sit-ups and hold the squeeze until your exhaled breath makes a wheezing sound for a couple seconds.

It sounds terrible but it's a very important part of this method of aborting a CH with oxygen... This forced exhalation breathing technique will squeeze out another half to a full liter of exhaled breath. This last volume or end tidal flow of exhaled breath has the highest CO2 concentration and blowing off CO2 is the key to the effectiveness of this procedure.

Then without delay, throw your head and shoulders back and inhale room air as rapidly and deeply as possible until you can't inhale any more.

Again without any delay, use the forced exhalation technique. Keep repeating this sequence as fast as possible with room air for 30 seconds. You should be able to complete 10 of these complete cycles in 30 seconds.

At the end of the 30 seconds breathing with this technique, exhale forcibly one more time and hold the squeeze for a good 5 seconds... Then place the ClusterO2 kit "T" manifold breathing port to your lips and inhale a lung full of 100% oxygen as rapidly as possible and hold it for 30 seconds.

I know it's difficult, but try to relax at this point. While you're waiting, place the breathing port on the ClusterO2 kit to your cheek or chin with the palm of your hand over the exhalation port to form a gas tight seal in order to inflate the reservoir bag for the next breath of oxygen.

If you're doing this breathing technique properly, you'll start feeling the symptoms of transient paresthesia and a slight dizziness... These temporary symptoms of paresthesia include a very slight tingling/prickling of the face, lips, and fingertips. You'll also experience a slight rush and a chill across your back when you start holding the lungful of oxygen... Paresthesia is the best indication you've pushed your body into respiratory alkalosis... (Made your blood more alkaline).

At the end of the 30 seconds holding the lungful of oxygen, exhale into the room with a good chest squeeze... then repeat the above sequence until the pain is completely gone...

Be sure to practice this procedure for a few cycles before the cluster beast attacks...

If you start this procedure at the first sign of an approaching CH attack, you should be able to abort the attack in four minutes or less... and with as little as 16 to 20 liters of oxygen...

If the CH hits while sleeping and is well established or rising, start this procedure as fast as possible. It will work effectively through pain level 9, (Kip 9), it will just take longer.

I also invented what I call the Red Neck Oxygen Reservoir Bag made out of a clean 40 gal trash bag or 30 gal kitchen garbage bag. I use a plastic Coke bottle with its cap and the bottom cut off as the mouthpiece, the tubing from an old disposable non-rebreathing oxygen mask, some electrician's tap and some Duck tape. After the Coke bottle mouthpiece has been inserted through one corner of the bag's bottom and the oxygen tubing through the other corner, I seal both with electrician's tape for an air tight seal then close the open end of the bag with a strip of Duck tape as illustrated in the following photos.

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

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

It turns out my Red Neck Reservoir bag works exceptionally well with an oxygen concentrator or low flow rate oxygen regulator. You make sure the cap is secure on the Coke bottle then plug the oxygen tubing into the barb fitting on the oxygen concentrator and turn it on. When the Red Neck Reservoir is filled completely, turn off the oxygen concentrator or cylinder supply valve. The Red Neck Reservoir is now ready for use to abort a CH using the method described above. All you need to do is unscrew the Coke bottle cap to inhale the lungful of oxygen then replace the cap. It also helps to turn on the concentrator or open the cylinder supply valve.

Other than the cost at less than $1, there's one more benefit of this contraption... There is no inhalation resistance.

Hope this helps...

Take care and please keep us posted.

V/R, Batch

« Last Edit: Apr 25^th, 2018 at 10:30pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

PatM

CH.com Newbie

Offline

I Love CH.com!

Posts: 2

Re: New here, not new to this.
Reply #2 - Nov 30^th, 2016 at 2:30am

Thank you, I will have to try the redneck reservoir. I realize now, that higher concentration or higher flow is needed, beyond what the concentrator can output, your method seems to be able to provide that.

I do know at one time oxygen hyperventilation was a method or indicated in trauma patients, it has since been discontinued, I believe due to it being administered ineffectively across pre hospital care professionals, simply because of mechanical issues for the most part. Non effective seals etc causing less o2 to get onboard a patient.

Either way, I am ready to remove a limb if someone said that would rid me of them at this point, so I will try anything. As it stands the o2 therapy with the concentrator simply takes the edge off a headache. From a 9 to an 8 or so, which does not seem like much but I think most here would take that as a victory.

Sometimes I think the loneliest time in the world is 4 am sitting alone in the dark with an o2 mask on praying it helps even a little.

IP Logged

Peter510

CH.com Alumnus

Offline

Don't give out... But
don't give in.

Posts: 966
Wexford. Ireland
Gender: male

Re: New here, not new to this.
Reply #3 - Nov 30^th, 2016 at 9:30am

Hey Pat,

It seems you are an old hand so I don't know what to say other than welcome. There are lots of friends here who know what it's like.

Just a comment about your O2. The minimum flow is recommended at 15L/minute. I know you won't get this from an Oxygen converter which is why most of us use tanks. You would find better relief at that flow rate.

Also, I see Batch has contacted you about D3 and it's really worth listening to his advice.

Regards,

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3706
Bremerton, WA
Gender: male

Re: New here, not new to this.
Reply #4 - Nov 30^th, 2016 at 12:15pm

Pat,

You bring up a good point about oxygen flow rates that support hyperventilation, or in the case of the new method I suggest, hyperventilating with room air for 30 seconds, then inhaling a lung full of oxygen and holding it for 30 seconds.

The basic respiratory physiology behind the effectiveness of this method of oxygen therapy as a CH abortive was introduced to the general public in the 1969 movie The Andromeda Strain. This is where a baby cried constantly, effectively hyperventilating until it reached and sustained respiratory alkalosis.

The secret to the success of this method of oxygen therapy is hyperventilating at forced vital capacity tidal volumes until you reach and sustain respiratory alkalosis. The procedure to accomplish this is simple once you understand lung volumes and respiration rates. In simple terms, we want to ventilate the lungs as completely and rapidly as possible to pump out more CO2 from the lungs than under normal respiration rates.

To do this, I suggest people stand to give their diaphragms a full range of motion and drop their jaw like saying the word "Haw" to maximize the inhalation and exhalation flow rate through the mouth.

Forced exhalation is key. When we exhale rapidly and forcefully until it feels like the lungs are empty... they're not... at that point you do an abdominal crunch like doing sit-ups and hold the abdominal crunch and chest squeeze for at least a second. You'll note a slight wheezing sound during the crunch as the airways to the lung's alveole constrict. It sounds terrible but it's very normal and not harmful. The trick to remember here is squeeze till you wheeze.

This simple act will squeeze out an additional half to full liter of exhaled breath highest in CO2 content. Then, without delay, inhale rapidly then repeat the forced exhalation with a crunch. On the 10th exhalation (10 complete cycles in 30 seconds), hold the crunch and chest squeeze for 3 seconds, then inhale a lungful of oxygen and hold it for 30 seconds.

At this point, you'll also notice the symptoms of paresthesia, a slight tingling or prickling sensation in the face, lips, fingers, lower legs and feet. This is a good sign that you've been hyperventilating effectively.

The net result of hyperventilating at forced vital capacity tidal volumes is an arterial CO2 concentration well below normal. This does two important things. It elevates arterial pH and this triggers blood hemoglobin to offload CO2 and upload oxygen.

Chemo receptors in the aortic and carotid bodies sense the lower CO2 levels and elevated pH. They in turn signal the body's pH homeostatic systems to lower the heart beat, slow the respiration rate and signal arteries, arterioles and capillaries to constrict. They do this to slow the flow of blood through the lungs to allow CO2 levels to rise back to normal. Lowering arterial CO2 content and elevating arterial pH are important parts of the CH abort mechanism.

It turns out that hemoglobin is pH sensitive and the elevated pH from hyperventilating enables hemoglobin to upload additional oxygen molecules to roughly 110% of capacity at normal respiration rates. In effect, this super-oxygenates the blood flow to the brain which is also part of the CH abort mechanism.

Be sure to practice this procedure for a few cycles before the cluster beast attacks...

If you start this procedure at the first sign of an approaching CH attack, you should be able to abort the attack in four minutes or less... and with as little as 16 to 20 liters of oxygen...

If the CH hits while sleeping and is well established or rising, start this procedure as fast as possible. It will work effectively through pain level 9, (Kip 9), it will just take longer.

The following chart from the pilot study of the demand valve method of oxygen therapy for rapid CH aborts illustrates the increase in abort times as the pain level increases.

Oxygen therapy combined with hyperventilating on room air is just as fast at aborting a CH and as effective as the demand valve method. I'm a patent holder of the demand valve method of oxygen therapy so I've studied and used it extensively since 2007. It also uses a lot less oxygen so it works very well with low flow rate oxygen regulators and oxygen concentraitors.

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

I realize there will be some nervous Nellies who wlll say causing vasoconstriction like this in the brain will cause ischemia... Well, the truth is they did several studies of forced hyperventilation with 100% oxygen during brain surgery. During these studies, they used brain imaging techniques to measure the decreased blood flow through the brain and direct blood gas analysis of venous blood leaving the brain. There was no evidence of ischemia or oxygen starvation.

Moreover, what they did fined, was the oxygen content of venous blood coming from the brain during forced hyperventilation with 100% oxygen was actually higher than than the oxygen content of arterial blood flow to the brain under normal respiration. They also concluded that hyperventilation with oxygen and an elevated arterial pH was more effective in inducing and sustaining vasoconstriction than 100% oxygen alone.

Take care and please keep us posted.

V/R, Batch

IP Logged

jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: New here, not new to this. Reply #5 - Nov 30^th, 2016 at 4:17pm I am in the library and just read the above post by Batch. I almost stood up and cheered. What a concise, cogent, entertaining read that conveys critical information to the clusterhead family ... better than any dusty worded textbook I've ever read on ANY subject..... BRAVO!!!!!
Back to top	The LARGE print giveth....and the small print taketh away. Tom Waits IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!