Hello everybody. I'm a 66 year old American expatriate living in Guadalajara, Mexico with my wife. Yes, Kim's the name but I'm a guy. I started experiencing episodic cluster headaches 5 years ago. Typical symptoms with severe attack: intense pain in right eye, heavy tearing, runny nose, elevated temperature, nausea, bowel movement. Pain lasts half hour to one hour. It wasn't till about two years ago that I finally discovered that the problem was not something an opthamologist should be treating. A neurologist told me it sounded like neuralgia. An internist prescribed Lyrica. I think the Lyrica works sometimes, but I can't be sure because I also experienced sudden remissions when my eye doctor prescribed eye drops for conjunctivitis.

I'd like to start with a basic set-up to see if oxygen works. I can get a 680 liter tank and the oxygen here in Guadalajara. The tank has a toggle valve and comes with a regulator and nose canula. It is sold by Catalina Cylinders.

I don't know what the flow rate is for the regulator that comes with the tank, so I might need a different regulator to get 15 liters/minute.

Questions: Can I hook up a non-rebreathing mask to a tank with a toggle valve? Have I understood correctly that masks are sold through this site? What about regulators?

Your help will be much appreciated. Kim

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Read this link. It tells you how to use 02, and gives you a link to order the new mask. The key to making 02 work is getting 100% 02 to your lungs. No outside air, no exhaled air. That's why the nasal canulas are generally worthless, they allow way too much outside air in.

Welcome to the board, glad you found us.

Joe

Hey Kim, welcome, and good luck with the O2. You should know however we are very cautious when it comes to CH diagnosis. There are other conditions which imitate CHs but which have other, and perhaps, more sinister causes. If you do have CHs then there are a variety of means by which the pain can be addressed and mediated, O2 being one. Do you know about abortives and preventatives and have you tried any? Do you have a CH diagnosis? Just curious and perhaps we can be of more help with more info. God bless. lance

It's rather uncommon for someone of your age to start Clusters for the first time. Commonly, 60+ is the age when they start to taper off.

A number of other disorders can mimic Cluster symptoms, some of these disorders are rather serious. Since headache disorders are more complex than many docs appreciate (reflecting the poor education/training in this area received by most docs, even neurologists).

If you have the option, it would be wise to find a headache specialist for a more comprehensive diagnostic work-up before you assume you have Cluster. Starting to use an abortive for Cluster may block the pain--but may also be blocking recognition of the real cause of the problem.

I'm linking a bundle of articles which deal with this issue--not to scare you--but to give an idea of the complexity of this issue. I'd suggest you print it out and give to your present doc to see if he sees the desirability for a more comprehensive work-up.


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Thanks everyone. I'll do some research. But I can't find anything under Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache" at this site. Do I need to google it?

Oh, sorry. I just found it. Didn't realize you were referring to a forum thread.

Hola Kim,

You sound confident you're having cluster headaches (CH) and Joe has given you a good suggestion with the link to the oxygen therapy post. 

Having said that, cluster headaches are rare and an orphan disorder.  That makes them difficult to diagnose correctly by GPs and even general neurologists.  It all too frequently takes a neurologists or headache specialist experienced in treating primary headaches like CH to make an accurate diagnosis and even then most of them will take their time with a differential diagnosis that's basically a process of elimination to rule out other, potentially more dangerous causes of your headaches.  An MRI is typically used to rule out many of these other causes.

You might want to take the cluster quiz, 4th tab down on the left then discuss the results with your PCP or neurologist if you can see one.

As far as oxygen therapy goes...  and it's the best, most effective abortive we have, the 680 liter oxygen cylinder will only be good for three aborts assuming you can get a 15 liter/minute regulator and non-rebreathing mask.  The CH.com store tab at the left will take you to a page that offers the O2PIMASK™ kit for $27.50...  This is one of the best and most effective non-rebreathing oxygen masks available.

A nasal cannula is typically used by COPD patients at flow rates too low to be effective in aborting a CH.  15 liters/minute is the minimum flow rate if you start early and the pain doesn't get too high...  At 7 or above on the 10-point pain scale, all bets are off on a successful abort using 15 liters/minute...  or the abort times are very long in coming...

If you're having three or more CH/day-24 hr period, you're going to need the larger M-size home medical oxygen cylinders as they hold 3995 liters and are good for 25 to 30 aborts with the right regulator and mask.  The cost per abort with the M-size oxygen cylinders is also in your favor...  These cylinders generally run $30 here in the states so that gives you a  cost per abort of $1.00-$1.20.  I was a chronic CH'er and averaged 3 CH/day-24 hr so kept three of the M-sized oxygen cylinders on hand at all times as shown below:

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I'm not sure if the larger cylinder sizes are available in Guadalajara.  The folks at Praxair would know.  Their web page for Guadalajara indicates the following numbers and address:
Av. 8 de Julio No. 1753 Col. Morelos
C.P. 44910 Guadalajara, Jal.
(333)36707424

If they don't carry any of the larger home oxygen cylinders and regulators, you may need to look into leasing one of the larger welder's O2 cylinders.

While you're dialing for oxygen you might want to swing by the local chemist there in Guadalajara and pick up the ingredients shown below that are used in the anti-inflammatory regimen.  It's proving to be an effective CH preventative.  The raw efficacy to date is 78% with a 13% margin of uncertainty...

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I get all of the above items at Costco for $35...  That works out to a 6-month supply at 20 cents a day...  You should be able to order them direct from Costco if you can't find them locally.

You can also see what other CH'ers here at CH.com are saying about their experience with this regimen at the following link:

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Take care,

V/R, Batch

Hola Batch! I visited a neurologist yesterday. He says he's a headache specialist. He wants me to have a cranial tomography. I guess that amounts to an MRI. I'll keep everybody posted. Kim

Saw my neurologist/headache specialist today. He said the CT scan I had done 6 days ago showed I have no tumor and no rupture of vessel - aneurysm. I have normal brain atrophy for my age. Said I may have atypical cluster headache – atypical, he said, because normally the attack period is short – one or two weeks. Seems he doesn't know what he's talking about. He prescribed Fasolan - flunarizine dihydrochloride - for prevention and Relpax - eletriptan hydrobromide - to abort.

The flunarizine is not used for prevention in the U.S. but, it's in the family of "them which is"--so give it a chance.

Replax is O,K. but if it doesn't give relief fast enough for you, ask for sumatriptan.