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Cluster Headache Help and Support >> Getting to Know Ya >> back after 3 years http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1278681876 Message started by robb39 on Jul 9th, 2010 at 9:24am |
Title: back after 3 years Post by robb39 on Jul 9th, 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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Title: Re: back after 3 years Post by Guiseppi on Jul 9th, 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 |
Title: Re: back after 3 years Post by Lettucehead on Jul 9th, 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... >:( 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!!!! |
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