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New member seeking answers (Read 3639 times)
kristen87
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New member seeking answers
Nov 12th, 2014 at 12:02pm
 
Hi everyone, I came across this site and noticed that it definitely has the potential to be helpful in terms of plenty of informed cluster headache sufferers. I was just recently diagnosed, finally. I had brain surgery approximately 3 months ago and have experienced excruciating nonstop headaches since, headaches that many of you know are unresponsive to the majority of treatments initially offered by doctors, until oxygen. what a genius concept. My question for anyone willing to take a shot at it is: I often read posts where people talk about their cluster headaches being aborted by oxygen, imitrex etc, I have tried everything from occipital nerve blocks, imitrex injections, you name it. The oxygen is the most efficient however I never experience the 'aborted' part. The headache substantially lessens but never aborts, is this something that can never be stopped? Obviously it appears that the cluster headaches I have are almost intractable and I desperately need tips on how to get to the aborted part of the story. Any and all advice is welcomed! I am sure that I need a maintenance medication but in the meantime can more oxygen get me closer to aborting the headache completely? Thanks again
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Bob Johnson
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Re: New member seeking answers
Reply #1 - Nov 12th, 2014 at 1:17pm
 
I'm assuming the brain surgery was for Cluster.

If so, and the standard treatments for Cluster have not worked it raises the possibility that you are not dealing with Cluster.

There are a number of disorders, some of which are quite serious, which mimic Cluster but whaich are NOT headache disorders.

Suggest you see the following and print it and drop on your doc's desk.


Look under: Medications,  Treatments,  Therapies -õ Important Topics ->Cluster-LIKE headache
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Batch
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Re: New member seeking answers
Reply #2 - Nov 12th, 2014 at 1:48pm
 
Hey Kristen,

Here's the latest oxygen therapy procedure and breathing technique you should try to abort your CH.† You'll need one of DJ's ClusterO2 kits from the CH.com store tab at the left of this screen.

I call this method Oxygen Therapy with Hyperventilation.† †It essentially involves hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds followed by inhaling a lung full of 100% oxygen and holding it for another 30 seconds.

Remove the face mask from the ClusterO2 kit when you receive it as you'll be breathing directly from the 22 mm nipple on the green "T" manifold or mouthpiece as shown below.† You'll also need to adjust the oxygen regulator so it fills the 3 liter reservoir bag completely in one minute...

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You'll also need to cup the T-manifold exhaust port in the palm of your hand and press the open breathing port to your cheek or chin when not inhaling from it to keep oxygen from escaping and let the reservoir bag fill while you're hyperventilating with room air.

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 when you start holding the lungful of oxygen...† Paresthesia is the best indication you've pushed your body into respiratory alkalosis.

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.

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.

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While you're waiting for the ClusterO2 kit to arrive and if you're handy with DIY projects, you can build a Redneck Oxygen Reservoir Bag Breathing System.† They work great...

All you need is a clean 40 gal trash bag, the oxygen tubing from your old disposable oxygen mask, an empty plastic Coke or Juice bottle (with cap), some Duck tape and some electricians tape.† The following graphics should help in this DIY effort.

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Fill the Redneck Reservoir Bag ahead of time.† If you've constructed it properly, it should hold oxygen for a few days.

When the next CH hits, turn on the oxygen supply and remove the bottle cap as you go through the first 30 seconds of hyperventilating with room air.†

Use the same breathing technique and procedures discussed above.† You'll be surprised at the lack of inhalation resistance sucking oxygen from the Redneck reservoir bag.

Take care and please keep me posted...

V/R, Batch
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« Last Edit: Nov 30th, 2016 at 11:50am by Batch »  

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BobG
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Re: New member seeking answers
Reply #3 - Nov 12th, 2014 at 7:18pm
 
Hello Kristen. You didn't say if you had a definite diagnoses of cluster headaches. Since the headaches started after surgery if may be a different condition. Cluster headaches come and go, sometimes many times a day/night, 15 minutes to a couple hours at a time. They are no continuous. Also, most cluster headaches are responsive to medications such as Imitrex, verapamil and lithium.
On the left side of your screen is a tab "cluster quiz". Have you taken the quiz? Your results may help us help you through the pain.
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LTtheKid
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Re: New member seeking answers
Reply #4 - Apr 30th, 2017 at 11:17am
 
Just wanted to bump this one to the top and say thanks Batch!  I hadn't seen this method before, but have been using exclusively since the beast returned about 3 weeks ago and I was back reading this site (episodic sufferer for about 20 years, cycles every 2-3 years for 4-6 weeks, always at night).  It's worked great, usually aborting within 5 mins or so, with a flow rate of 5 L/min.  I could probably bump it lower as I could hold my breath for quite a bit longer, but I have plenty of oxygen at this point.  Had fallen off the Vit D train, but I'm back on and the hits are quite a bit milder than in the years before Vit D.  I don't always do the 30 second warm up, but do try to blow off as much CO2 as possible with the exhalation breaths. 

Thanks again Batch for all you do!

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Batch
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Re: New member seeking answers
Reply #5 - May 1st, 2017 at 7:13am
 
Hey LT,

Thanks for the kind words...† If you don't have a copy, You can download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link.† Be sure to share a copy with your PCP or neurologist when you ask for the lab test of your serum 25(OH)D.† That way you're both singing from the same sheet music.

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You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone as a ready reference.† The QR Scanner app is free.† It takes less than 10 seconds to download and install.

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Take care and please keep us posted.

V/R, Batch

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