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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Oxygen Use
        
(Message started by: dis on Aug 22^nd, 2005, 10:13am)

Title: Oxygen Use
Post by dis on Aug 22^nd, 2005, 10:13am

I am a 53 year old woman who has suffered from cluster headaches for over 25 years. Recently they returned after a five year ( the longest ever) headache free time. My current neurologist prescribed an oxygen tank for me and I can't believe how well it works. It literally gets rid of the headache within minutes. NOTHING HAS EVER BEEN AS SUCCESSFUL. My former neurologist told me it didn't work well. I still use calcium channel blocker and occasional imitrex, but this oxygen is amazing. If you've never tried it I can't urge you enough to give it a chance.

Title: Re: Oxygen Use
Post by marlinsfan on Aug 22^nd, 2005, 10:16am

Glad you found it! It works great for me too, though I need 10-12 minutes. Maybe higher LPMs may do the trick, but my regulator only goes up to 8 LPMs.

O2 is safer, cheaper and more effective than anything else.

Title: Re: Oxygen Use
Post by catherinelane on Aug 22^nd, 2005, 5:03pm

i cried i begged i screamed and they still wont prescribe me oxygen even while i was in hospital

Title: Re: Oxygen Use
Post by LeLimey on Aug 22^nd, 2005, 6:02pm

Catherine I know we chatted on the other thread and I gave you the number for the OUCH UK helpline, give them a ring tomorrow. There IS a way you can get prescribed O2 even if your doctor is being unhelpful and that is by going onto the o2 trial at the Institute of Neurology in London. The hlepline can give you all the details but basically you don't have to go up there. they will arrange for you to get the o2 and once you have been prescribed it then you can keep being prescribed it!! Its backdoor but it works and I'm all for circumventing the system when needs be!
Good luck, I know they still need more bums on seats so this could be the ideal solution for you
Helen

Title: Re: Oxygen Use
Post by Salvelinus on Aug 22^nd, 2005, 9:06pm

Dis, oxygen is truly a gift from above, isn't it? I'm new to it as well, and it also works for me within 5 minutes. It's just so incredible! 18 years and NOTHING has worked so well, with so few side effects. I still get goosebumps when I think about it . . .

Catherine, it sounds like Helen has a good idea for you. I truly hope you are able to get some help. I don't know your situation, but if it's possible to see someone else, you probably should. That physician seems to have issues. Unless you have a certain type of lung disease, or cognitive deficits which would put you at risk for smoking while you use O₂, I can't see any risks or side effects. I'll pray for you . . .

Namaste,
--Scott

Title: Re: Oxygen Use
Post by Sean_C on Aug 22^nd, 2005, 9:18pm

on 08/22/05 at 17:03:03, catherinelane wrote:

i cried i begged i screamed and they still wont prescribe me oxygen even while i was in hospital

We have alot of British friends here Catherine that should be able to help you out. Have you been to http://www.clusterheadaches.org.uk ?

Sean.............................

Title: Re: Oxygen Use
Post by catherinelane on Aug 24^th, 2005, 1:37pm

ty ty ty all have been to ouch uk and have paid membership. it just upsets me to hear sufferers say that oxygen is so amazing and you think to yourself in the middle of a kip 10 at 2 am why havent i got any why wont they help me then you ask your doc annd they say its not something they will prescribe but am now exploring the avenues you have so kindly given me as my poor husband is going off his head trying ot help, but i have my verry first appointment (after 3 and a half years) with a neuro in early september i am praying he will give me the help i need.

Title: Re: Oxygen Use
Post by LeLimey on Aug 24^th, 2005, 2:15pm

Hi Catherine!
I'm glad you've joined OUCH UK! I'll look out for you posting over there too! I'm HelenK over there just so you know :) You'll need to send an email to webteam@ouchuk.org to get them to send you a log on and password as they aren't automatically issued by the way.
Then we can chat on two boards!
Between both we'll have you up and running in no time! You can have a log on on ouch uk for your husband too if he would like, my husband posts there occasionally as well as here, he doesn't have CH but he is my supporter and it helps him cope having somewhere to read up about it. Its tough for them too. Just say if you want a log on for him too and what his name is so they can set it up and it won't be a problem!

Title: Re: Oxygen Use
Post by seasonalboomer on Aug 24^th, 2005, 2:51pm

As for having a physician that won't prescribe O2 -- as your venerable leader once said, "Never, ever give in!" Bring, piles of papers you can find on the internet and this site about how effective it is. Make a scene in the doctor's office. Shame him in front of others.

Getting O2 is worth any fight.

Scott

Title: Re: Oxygen Use
Post by Jonny on Aug 24^th, 2005, 3:03pm

on 08/24/05 at 14:51:57, seasonalboomer wrote:

" Bring, piles of papers you can find on the internet and this site about how effective it is.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Title: Re: Oxygen Use
Post by LeLimey on Aug 24^th, 2005, 3:04pm

Oh Scott don't worry.. we will help Catherine get O2 by fair means or foul!! ;) You know me! LOL

Title: Re: Oxygen Use
Post by seasonalboomer on Aug 24^th, 2005, 3:09pm

on 08/24/05 at 15:04:36, LeLimey wrote:

Oh Scott don't worry.. we will help Catherine get O2 by fair means or foul!! ;) You know me! LOL

That's great Helen. I hate hearing when someone can't get one of the top items that should be in everyone's quiver... because of a daft doc.

Title: Re: Oxygen Use
Post by paul_pero on Sep 7^th, 2005, 7:56am

Getting O2 in Australia was hard too. But after getting lots of info from this site and taking it to a new doc I finally got it. Works wonders. I did 14 years without it. The last cluster was the first time I had any pain relief. Like dis said, pain gone in a few minutes. :D

Paul

Title: Re: Oxygen Use
Post by catherinelane on Sep 7^th, 2005, 4:50pm

hi there people saw a specialist on the 6th confirmed clusters im on a heavy dose of steroids [smiley=huh.gif] so looks like a diet is on the cards :-X and he is writing a letter to my doc to tell him to prescribe me oxygen and immagran injections within the next week, oh and i also have to be in a video he is making to educate docs on clusters so all in all a great success and i feel like a gret weight has been lifted, only up from here [smiley=laugh.gif]

Title: Re: Oxygen Use
Post by Salvelinus on Sep 7^th, 2005, 7:51pm

on 09/07/05 at 16:50:50, catherinelane wrote:

oh and i also have to be in a video he is making to educate docs on clusters so all in all a great success and i feel like a gret weight has been lifted, only up from here [smiley=laugh.gif]

Congratulations, Catherine! ;;D Sounds like you found someone good.

A cluster education video for physicians . . . THAT is a GREAT idea!!!! Now, how to make them watch it . . . [smiley=huh.gif]

[smiley=laugh.gif]

Namaste,
--Scott