Click this link to read a post I like on the clusterheadaches.com message board...

37-41withrestrictions

CH.com Veteran

Offline

NOT SO PF AT THE MOMENT

Posts: 124
Chester UK
Gender: female

Thought I'd Be A Happy Bunny!!
Jan 24^th, 2011 at 7:29am

Short vent... and need a short answer!

Had my neuro apt at the beginning of January (before joining this wonderful place) at the appointment was informed that I was on a decent dose of Verap (80mg twice a day) as I now know that is not a decent dose on Cluster World, Neuro agreed to increase the dose as I was still having 4 or more clusters a month lasting 4-5 days and some attacks lasting 2 hours+ (Kip 7)

I have just been to my GP and the letter from the Neuro has still not arrived, he (GP) has agreed to increase the verap to 120mg twice daily which is great...well a start, I asked about O2 and was told (in a patronising manner) that
a) the Neuo has to prescribe it ...next apt June Sad

b) it is expensive...

Here's my question to the forum...if I had the O2 would I still need sumatriptan???

Back to top

If you see something you want.. reach out and grab it with both hands.....just watch out you dont get a smack in the chops for grabbing the wrong thing!!!

IP Logged

Click Here to visit the CH.com Facebook page!

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: Thought I'd Be A Happy Bunny!!
Reply #1 - Jan 24^th, 2011 at 8:03am

It depends. Some have found that O2 at a high flow rate (25lpm and higher) coupled with an energy drink can handle most hits. This has been my experience for the past 9 months. Others have had to use a triptan as well to knock out the more persistent hits. The good news is the O2 and energy drinks should/could handle most of it. Try and get both. Nothing wrong with having more options than you need. Have you looked into welding O2 as an option instead of waiting for your Rx? Blessings. lance

Back to top

IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Thought I'd Be A Happy Bunny!!
Reply #2 - Jan 24^th, 2011 at 9:27am

02 has almost completely eliminated my trex use. I only use the trex if I'm dumb, don't plan well and get caught away from the 02. 02 kills the attack just as fast as trex for me.

I don't know about the UK, but here in the US:

3 shots of trex, about $900

E-tank, $4 a month to rent, $15 to re fill, $20 mask, $25 regulator....so for an initial $64 investment, I've already killed 5-8 attacks. The cost comparison isn't even close..........your doc is uneducated in such matters...not necessarily dumb...just uneducated.

Joe

Back to top

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

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: Thought I'd Be A Happy Bunny!!
Reply #3 - Jan 24^th, 2011 at 11:42am

Your GP probably thinks it's expensive as he is expecting you to be using lots and lots of oxygen, but given that people can abort a CH quickly with high flow rates (I average 6 minute aborts), we use relatively little compared to people who use oxygen for assisting their breathing.

Costs vary between countries, but it's way cheaper than imitrex.

Back to top

IP Logged

37-41withrestrictions

CH.com Veteran

Offline

NOT SO PF AT THE MOMENT

Posts: 124
Chester UK
Gender: female

Re: Thought I'd Be A Happy Bunny!!
Reply #4 - Jan 24^th, 2011 at 12:08pm

Thanks for the advice guys...
Joe I think you have mentioned on 1 of my posts about the benefits of being educated... I printed out info forwarded by Bob and have left it at the GP's surgery (prior to my visit today!) but I suppose I will have to embark on a crusade to educate the under educated!!!!
Would be so bad but I work for the NHS!!!! Shocked

Back to top

If you see something you want.. reach out and grab it with both hands.....just watch out you dont get a smack in the chops for grabbing the wrong thing!!!

IP Logged

Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Thought I'd Be A Happy Bunny!! Reply #5 - Jan 24^th, 2011 at 3:10pm There are several folks here who live in the UK and they have told us that 02 CANNOT be denied to you. You might have to jump through some hoops...but to me it would be well worth it. Oxygen with a high-flow regulator is a Godsend.
Back to top	Hurt people.....hurt people. Think about it. IP Logged

37-41withrestrictions CH.com Veteran Offline NOT SO PF AT THE MOMENT Posts: 124 Chester UK Gender:	Re: Thought I'd Be A Happy Bunny!! Reply #6 - Jan 24^th, 2011 at 3:21pm Hi Linda Im prepared to jump through any hoops and I think I'm going to have to be patient...typical nurse...I make a terrible patient!!!! Sue
Back to top	If you see something you want.. reach out and grab it with both hands.....just watch out you dont get a smack in the chops for grabbing the wrong thing!!! IP Logged

Linda_Howell

CH.com Moderator
CH.com Alumnus

Offline

Do not feed the Moderators

Posts: 11927
Santa Maria, Ca.
Gender: female

Re: Thought I'd Be A Happy Bunny!!
Reply #7 - Jan 24^th, 2011 at 4:27pm

As a nurse who works for the NHS I would think that you'd be in a good position to not HAVE to jump through them. Patience isn't something I would be able to have when I'm hurting bad and know that relief is there for the asking....or demanding.

I have medical e-tanks as well as a huge welders tank in my garage which isn't portable. Please look into the welders route. One tank of that & I can abort many HA's and a refill at any welders supply only costs me 26.00

Back to top

Hurt people.....hurt people. Think about it.

IP Logged

Samiam

CH.com Old Timer

Offline

I love YaBB 1G - SP1!

Posts: 346
Philadelphia PA
Gender: female

Re: Thought I'd Be A Happy Bunny!!
Reply #8 - Jan 24^th, 2011 at 8:17pm

I've had Cluster for over 30 yrs. I'm not chronic but use to get them 5 months out of the year. At that time I was up to 800 mgs of Calan a day and it didn't do a thing. So your dose is nothing. They would have gone higher except my BP was way to low.

Yes I still use Imitrex with the hits which average about 3 a day but I use half the dose that I use to use and I'm in a lot less pain. I use to take either 3 nasal sprays a day or 3-100 mgs pills a day. now I can cut them in half and I don't have to use many nasal (which always gives me sinus problems) I probably could use even less but I'm still scare to rely just on the O2 (I'm getting better)

1 "H" tank last me about a week. I have a couple of "E" tanks also so I can be mobile while I'm in cycle. I can abort an attack in about 10 minutes sometimes less if I catch it early at a 15 LPM. It's been a God Sent to me.

Even with having these for over 30 yrs every time I come back here I learn new things and they are great at hand holding when you need it also. My cycles now are about 6-8 weeks.

You are your own advocate if you don't fight for yourself no one else will.

Blessings,
Sami

Back to top

"A smart man learns from his mistakes......A wise man learns from the mistakes of others"

IP Logged

Click Here to visit the CH.com Facebook page!

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Thought I'd Be A Happy Bunny!! Reply #9 - Jan 25^th, 2011 at 8:52am You are your own advocate if you don't fight for yourself no one else will. You've said a mouthful of truth there! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

37-41withrestrictions

CH.com Veteran

Offline

NOT SO PF AT THE MOMENT

Posts: 124
Chester UK
Gender: female

Re: Thought I'd Be A Happy Bunny!!
Reply #10 - Jan 26^th, 2011 at 9:58am

You are your own advocate if you don't fight for yourself no one else will.

totally agree, I can now fight my corner with confidence following the useful info I have gained from this site, at least having the knowledge and evidence base to back a request stands you in a very strong position for getting the appropriate treatment.

Back to top

If you see something you want.. reach out and grab it with both hands.....just watch out you dont get a smack in the chops for grabbing the wrong thing!!!

IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: Thought I'd Be A Happy Bunny!!
Reply #11 - Jan 28^th, 2011 at 1:29am

37-41withrestrictions wrote on Jan 24^th, 2011 at 7:29am:

Here's my question to the forum...if I had the O2 would I still need sumatriptan???

After finding out here about this newer, much improved approach for administering O2 I made it my first line abortive for my last episode.

At my peak cycle, which was coming on really strong, I was very glad I had imitrex (sumatriptan) injections as a back up though, as sometimes I needed them.

I think it's important to have a back up abortive, and sumatriptan injections are extremely effective.

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

Linda_Howell

CH.com Moderator
CH.com Alumnus

Offline

Do not feed the Moderators

Posts: 11927
Santa Maria, Ca.
Gender: female

Re: Thought I'd Be A Happy Bunny!!
Reply #12 - Jan 28^th, 2011 at 7:07pm

Imitrex/Imigran i njections ARE highly effective. They should be used sparingly and only when you are in a situation where you:

1. forgot to refill 02 tanks and it's Friday night. (NEVER do that)
2. you are out on the town and dragging 02 tanks into a social setting just isn't feasable.
3. can't think of a 3rd reason.

Back to top

Hurt people.....hurt people. Think about it.

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!