Oxygen

[kathie]

My neuro keeps prescribing me different meds for abortive, ie: Maxalt, Relpax, they don't work.  My dad uses oxygen for one of his abortives, how do I get my neuro to understand that this is the best method?  Has anyone else had experience with having to talk their neuro into something like that>  I have an actual follow up appt on July 7 (this coming week) and I would like some options on how to approach him.  Thanks! :

[Dallas Denny]

Hi Kathie, 

Welcome to the community!!  Sorry ya had the need to find us though!!

My advice would be to "mouse over" the little black menu tab on the upper left side of the screen and click on the CH.com Oxygen page and start printing....or.........

Have a sudden urge to learn how to weld, go rent a M tank full of O2 (don't tell em your gonna breath it), order a O2 OxyAcetylyn regulator off ebay at about $70 and a Opti2mask  for $30 from the CH.com store and forget about educating you doc!!!  Here close to where I live its  $150 deposit on the tank, $8 a month rent and $18 to refill the tank so it'll cost around $275 to get set up.

Good Luck and Welcome Home!!

Dallas Denny

[birdman]

Welcome home!  Denny has basically said it all.  I have the welders 02 for my home, and get the small tanks from my insurance to have at work and in the car.  Tell, not ask, your doctor what you want to try.  If not, find another doctor.

[jayhedges]

Kathie, welcome to CH heaven. It's the only place where we all understand. You wil find friends here and answers.s

RE O2, I agree with Dallas Denny, but understand why you want to educate you Neuro. Follow the link below to download a pdf file you can down load for free, print and take to your Neuro. It is published by the Journal of the American Medical Association. So pretty hard to argue with.

http://jama.ama-assn.org/cgi/reprint/302/22/2451?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=oxygen+for+Clusters&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT

But beware...It says 12 liters per minute...My doc wouldn't even look at it. She prescribed 6 liters per minute with a regular O2 mask. I suffered with no results for three days until I ended up in the ER with the same article. Dr. Jung (bless her sole) at Hopkins ER actually went on-line and read this article and others and upped my dose to 12 liters per minute with a (shitty) non re-breather mask. It "helped". Then Hopkins home health care sent the wrong regulator and all I could get was 10 lpm.

For the record the medical community thinks 6 to 12 liter per minute with a non-rebreather is enough. I don't think anyone here will agree. I am 22 days into my first CH and just today received my new regualtor which let's me go to 50 lpm which is only necessary if you want to hyperventilate. My guess is 15 lpm will help you and 25 for sure. But you will need the awesome non re-nbreather mask Denny mentions that is available for $29.00 here on this web site, but will take a few days to arrive. Buy a regulator that will get you up to 25 lpm and then a welding tank. I paid $44 for the first M tank (good for 30 or 40 treatments) and they come to me to refill for $22. A little different that Denny's deal but well worth it if you can afford it. If your regulator doesn't measure lpm (most don't), no need to panic. The green 3 liter bag that comes with of the mask will help you regulate the flow. Ease open the flow until you can breath at the rate you want (most say 24 breaths per minute for regular beathing) without the bag emptying all the way when you inhale the 02. This is the only mask I have found that eliminates room air so you get nearly 100% oxygen. Use the regulator to control the oxygen flow so the bag never empties all the way but deflates 70% to 80% when you inhale. 20 minutes should abort your headache, but if not wait 10 minutes and repeat for another 20 minutes. Our founder Bob G says nearly 100% success with this protocol.

Be prepared for a battle though. It will be a hassle getting medical O2, and easier bit still a hassle getting the welding o2 which ai really recommend. Then get the right regulator and the right mask. Tell your neuro if you want but no way they will prescribe anything more than 12 to 15 lpm and my guess is they will want you to start lower. More likely they are going to presribe meds that most of us have tried and given up on. Not tellin you to ignore your doc. Just warning you that unless he/she is a headache specialist, they don't know much about CH. If you do get Med O2 then you have to babysit the Oxegen provider to make sure you get what your doc prescribed. Then come back tell us all how you are doing. We really want to know!

[Bonkers]

Hi Kathie,

There's a lot of info on the sister site to this one, http://www.clusterheadaches.com/wwwboard2/index.html, that you would be well-advised to familiarize yourself with. Here, the emphasis is on the use of natural (mostly), alternative medications that may allow you to "bust" the cycle of your headaches and perhaps eliminate them entirely. Not all of these substances are legal - in fact, most aren't - but many have found that they provide, for the 1st time in their lives, lasting relief from what many call the "monster" which has taken over their lives. Stick around. We'll join the battle with you.

Ron

[kathie]

Thanks for all your help, time and advise.  I will take all info with me to next appt.  Tried the Relpax today to no avail.   I will keep you updated.