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back after 3 years (Read 1330 times)

robb39

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back after 3 years
Jul 9^th, 2010 at 9:24am

Hi I was on here about 3 years ago. I am 39 now and I have had them since i was 21. I get them every 2 to 3 years and they last anywhere from 2 weeks to 2 months. I am in my 6th week of this cycle. In the past I would get them at the same time everyday like clock work but this cycle is different. they have became more numerious and are irratic. I dont get them at the same time everyday and they dont last the same amount of time. Some last for 20 min and some an hour. I was wondering if this was a sign that they may be turning chronic on me? Ive tried all types of meds. the only thing that has worked is 100% high flow oxygen. I have been in the US army for 21 years and they will not prescribe it to me. Everytime I go the the emergency room, by the time i get to see the doctor the headache is gone and I tell him about it and he looks at me like im a retared or something. Then he says well it looks like its over now and sends me on my way. Really made me feel like taking a sledge hammer, hitting him in the face with it then he'd have an idea of what it feels like. Very uncaring and unsympathetic. Im thinking my only option is I will have to buy the oxygen and all the stuff that goes with it myself. Can I buy Medical grade oxygen and all the stuff that goes with it that I will need?

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Guiseppi

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Re: back after 3 years
Reply #1 - Jul 9^th, 2010 at 10:22am

Welcome to the board Rob, sorry the beast is back. The changing characteristics of CH do not necassarily mean you are going chronic. 32 year episodic here. In my 20's and 30's you could set the atomic clock by my cycles start and end dates, and my daily hits. 40's they went all over the map, but still have not gone chronic.

You cannot get medical grade 02 without a prescription, but welding oxygen is exactly the same stuff, and many people on the board use it. It literally comes out of the same big tank that the medical bottles get their 02 from. You just can't tell them it's for human consumption or they aren't supposed to sell it to you.

Not sure if you have tried any of the common prevents while you're on cycle, Verapamil, Lithium or Topomax. All work to varying degrees for people on this board to help lessen the number and intensity of attacks.

You need to get to a general practitioner and get referred to a neurologist. This is too complex a condition to try and get an ER doc to diagnose and help you. If the first doc you see doesn't help you, find out how to appeal up the chain to get a neuro referral. This condition does not lend itself to sitting back and hoping a doc can help you. You must be aggessive in educationg yourself, and pushing whichever medical system you're in to give you what you need. Wishing you the best of luck with that.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Batch

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Re: back after 3 years
Reply #2 - Jul 9^th, 2010 at 10:42am

Hey Robb,

Go with the Rx for oxygen inhalation therapy... At flow rates that support hyperventilation (≥25 liters/minute), you'll get very fast aborts and great efficacy... Even at a flow rate of 15 liters/minute, the highest flow rate most physicians will prescribe, you won't be sorry.

I put up a post on how to get a properly prepared prescription for oxygen inhalation therapy at the following link:

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

It contains suggested wording for your Rx for oxygen therapy and there are printouts you can download to take along when you see your neurologist or PCP for the Rx.

The important thing for you and your physician to understand is you are using oxygen inhalation therapy as a cluster headache abortive... not a supplement for low arterial oxygenation. You need the increased oxygen flow rate to support a lung ventilation high enough to cast off excess CO2 that can easily build up at too low an oxygen flow rate administered with a non-rebreathing oxygen mask.

Excess CO2 is a powerful vasodilator and it can easily overpower the beneficial vasoconstriction made possible with oxygen at high concentration. Too much arterial CO2 makes aborts very lengthy if not impossible at the higher pain levels where the increased physical activity of doing the CH two-step dance, rocking back and forth, or banging the head generates more CO2.

If your doctor won't prescribe the higher flow rates you can always order a regulator capable of these higher flow rates over the Internet. Getting one of the $27.50 O2PTIMASK™ kits from the CH.com store at the left is also a good idea. The 3-liter reservoir bag on the O2PTIMASK™ is far superior to the 1-liter reservoir bag used on all the disposable oxygen masks the home oxygen therapy folks provide.

The higher oxygen flow rates are very safe. Navy and Marine Corps pilots flying tactical fighter and attack aircraft have been breathing 100% oxygen at flow rates over 40 liters/minute for over 70 years with no ill effects... I've got over 3000 hours flight time in Navy fighters and all of it was spent breathing 100% oxygen from takeoff to landing at flow rates over 40 liters/minute on missions lasting over two hours. I've also been using oxygen inhalation therapy at these flow rates for over 5 years and I'm still here doing just fine at 65...

Take care,

V/R, 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

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Lettucehead

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Re: back after 3 years
Reply #3 - Jul 9^th, 2010 at 10:25pm

It just keeps blowing my mind how difficult so many people are finding it to get o2 prescribed. We're not talking narcotics here! You're not asking for inhaled nitrous oxide!
Geez... Angry

As for ER docs - god bless, they do what they can, but often the attitude is 'Treat 'em and street 'em'. i.e. fix the acute problem and clear the room. Joe is absolutely correct - you need to start with a good GP...

Wishing you PF days!!!!

Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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