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New Message Board Archives >> 2004 Cluster Headache Specific Posts >> should i ask DR for o2
(Message started by: OLLY on Jun 14th, 2004, 4:10am)

Title: should i ask DR for o2
Post by OLLY on Jun 14th, 2004, 4:10am
9.09 gmt   im at the doctors this afteroon for the 3rd time in 3 weeks  so far ive been on propranolol (this did nothing)   now im on verapamil   which seem to be helping a little bit but i still get attacks down from 3 or 4 a day to one late at night
               two things i want to know




1. should i ask dr for o2  as she has never mentioned this to me and i notice alot of people in here recomend it


2. should i ask for a brain scan???



any advise would be great
 

Title: Re: should i ask DR for o2
Post by BillyJ. on Jun 14th, 2004, 4:18am
"should i ask dr for o2  "
Unless you OLIKE the pain.
you may want to ask about upping the dose of
verapamil too.
PFwishes to all,BillyJ

Title: Re: should i ask DR for o2
Post by Bob_Johnson on Jun 14th, 2004, 7:01am
Very little chance that a brain scan will reveal anything unless you have a history of head injury or other neurological signs.

Oxygen is very effective for many folks but there is also a pattern of the headache returning shortly after the O2 is stopped--not for everyone but don't be surprised. There is still need for abortive meds when this happens and/or when traveling and don't have your equipment with you.

Re. the late night attack: an old treatment which is effective is to take a 2mg ergotamine at bed time. In the U.S. brand name is Ergomar--put under your tongue and allowed to dissolve.

While is not the best product to abort attacks,if you take it at the earliest sign of an attack it can be effective. On a dose basis, it's inexpensive and worth a try.

Title: Re: should i ask DR for o2
Post by pubgirl on Jun 14th, 2004, 7:34am
Olly

If 02 works for you (does for 80% of us!) it is liquid gold!

Hate to sound like an old record here, but 02 is listed in the BNF as one of the the main two abortives for CH (with subcutaneous sumaptriptan aka Imigran), but if you don't consult the information on OUCh Uk you will be prescribed a standard NHS cylinder with 02 flow rate which will do NOTHING.

You need a BOC CD cylinder with built in 15l/min regulator (this is the portable version which is good for a trial but won't last long) This is a non-standard item which you usually need to take specific printed details to your GP and pharmacist to get the right thing.

and, if it works for you a standard NHS 1360 litre tank but a special regulator which goes up to 15l/min which you can borrow or buy from OUCh. The NHS DOES NOT ISSUE THEM.

Wendy

Title: Re: should i ask DR for o2
Post by miapet on Jun 14th, 2004, 12:05pm
We vote you get the o2.  AND, unless there's reason to suspect anything other than CH . . skip the scan . . (unless you have great insurance that pays for everything and you just want to see *g*)
*positive light and energy*
miapet

Title: Re: should i ask DR for o2
Post by don on Jun 14th, 2004, 1:59pm
If you want your insurance to cover it then you should ask.

Title: Re: should i ask DR for o2
Post by pubgirl on Jun 14th, 2004, 2:35pm
Olly doesn't need insurance to get this here, it is fully available on our NHS system, it's just getting the GP to write the prescription (which isn't sometimes as easy as it sounds!)

Wendy

Title: Re: should i ask DR for o2
Post by Gator on Jun 14th, 2004, 2:39pm
No, you should demand it.  At least for long enough to see if it works for you.




Title: Re: should i ask DR for o2
Post by pubgirl on Jun 14th, 2004, 5:29pm
I SO agree with you Gator!

I would stay sitting in my seat in the GP's room until he gave me what I needed and refuse to leave. Ask nicely, then insist if that doesn't work.

Our system here says that we are ENTITLED to the right treatment and this should not be withheld on cost. There is a process we can follow if our GP refuses, but in practice, no GP wants to be taken down that route so they usually cave in and prescribe. It just sometimes takes determination to make them do it.

Wendy

Title: doc,s never heard of o2 !!!!!!!!!!!!
Post by OLLY on Jun 17th, 2004, 9:02am
just asked doc about o2 and cant believe it she asked me what it was when i told her she said never heard of it being used and would get struck off if she precribed it >:(

Title: Re: should i ask DR for o2
Post by pubgirl on Jun 17th, 2004, 2:49pm
Olly

This is criminal! You poor devil. She is a witch and doesn't deserve to be called a doctor.

MAKE HER LOOK IN HER OWN BNF. OF COURSE THE SILLY MOO WON'T BE STRUCK OFF. IT IS THERE AS A STANDARD TREATMENT.

It is SO time to change your doctor


Wendy

Title: Re: doc,s never heard of o2 !!!!!!!!!!!!
Post by Superpain on Jun 17th, 2004, 5:53pm

on 06/17/04 at 09:02:22, OLLY wrote:
just asked doc about o2 and cant believe it she asked me what it was when i told her she said never heard of it being used and would get struck off if she precribed it >:(



Pubgirl is right...
Get a doc.

Title: Re: should i ask DR for o2
Post by Woobie on Jun 18th, 2004, 12:32am
Ummmmm.............

Get a new doc - QUICK!    

seriously!

Title: Re: should i ask DR for o2
Post by Filbert on Jun 18th, 2004, 7:29am

on 06/18/04 at 00:32:12, Woobie wrote:
Ummmmm.............

Get a new doc - QUICK!    

seriously!


Yep can't add to that-change!

             Filbert

Title: Re: should i ask DR for o2
Post by OLLY on Jun 19th, 2004, 4:30am
WOW thanks all for your replies . i rang the doctors up and my GP has promised she is looking into it (lets see).
       
    hopefully though its looking like the verapamil is starting to work. im down to 2 mild attacks a day and getting better day by day.

       Thanks for everyones help in this wonderful site,especially you wendy for your your hard line approach on the subject full respect to you and i hope you and everyone  that as helped me out and thoses that  suffer with CH have painless days and nights.



 ONE AGAIN I THANK YOU ALL ;)

Title: Re: should i ask DR for o2
Post by Allen_A on Jun 19th, 2004, 4:56am
It is almost 2 in morning. I woke up 20 minutes ago with pounding  pain once again.  I sat up, turned on O2 tank , put my non-rebreather mask to face and in 10 minutes, pain was miraculously gone.     YES, Olly, ask doc for O2. Demand O2.  Beg, borrow, steal O2.  But get it somehow if you are  tired of night after night of sleepless excruciating pain.   I have suffered for 30 years from these "headaches", and I have just now a week ago, discovered O2, thanks to this website. It is a Godsend.  CH has affected every corner of my life over the years. Relationships, jobs, my very sanity at times. But right now, this morning I am pain-free in minutes, and going to sleep well rest of night, so life is good at this moment.  

Title: Re: should i ask DR for o2
Post by crazyauntboo on Jun 19th, 2004, 4:32pm
Hey all,

I'm a big fan of 02 and have been using it for years.
I just read though that 02 can scar your lungs.
This terrifies me since there has been times I've fallen asleep and sucked down a whole large tank!
Has anyone else read this or talked to their doctor about it?  At the time when I am in pain i don't care what the consequences are . I just want it to stop.
Any one else concerned?

Title: Re: should i ask DR for o2
Post by Gator on Jun 19th, 2004, 4:51pm
I would get a new doc and report this one to whatever medical authority you have there.   Quack!

Title: Re: should i ask DR for o2
Post by pubgirl on Jun 19th, 2004, 6:54pm
Olly

Don't give up. Don't mean to be hard line, just trying to help you get what you are entitled to.

Wendy

Title: Re: should i ask DR for o2
Post by FZfan on Jun 19th, 2004, 8:17pm

on 06/19/04 at 16:32:28, crazyauntboo wrote:
I just read though that 02 can scar your lungs. This terrifies me since there has been times I've fallen asleep and sucked down a whole large tank!


DO NOT DO THIS! First thing you should do with your non-rebreather mask is cut the strap so that if you do fall asleep, the mask will fall away from your face.

Breathing pure o2 for long periods of time can scar lungs, but it still takes a lot for a long period of time. Cut or remove your strap at once so that this never happens again and then you won't have anything to be concerned about.

Title: Re: should i ask DR for o2
Post by crazyauntboo on Jun 19th, 2004, 8:19pm
Duh, I never thought of that.
It's only happened once. I'm much careful  now.
Now I set my alarm clock in case I do fall asleep.
How would you even know if your lungs are scarred?




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