Hi Folks

Well I finally got to my Neuro appointment on Friday. As its been a few years since I saw a Neuro, and having read some of the comments made here on the site, I didn't really have very high hopes.
This guy actually seemed to both understand and have a relatively good knowledge of CH. He listened to what I had to say, he took on board my opinions, he even took on board my concerns about certain meds!!
I found myself wondering just how far I could push him. But I actually didn't have to. I didn't have to pull out the print off's I'd taken with me. We just discussed and he accepted the facts.
We're trialing a variation on my preventative meds that we both actually agreed was the best one. But here is the best thing, that I couldn't possibly have hoped for.

He knew about the success of O2. He's actually going about trying to get it cleared for me to have it, through the NHS. I know they say don't count your chickens before they're hatched, but I literally can't believe my luck, just the fact that he's trying to sort it! He's even intent on trying to sort it asap, bearing in mind that, if I adhere to my recent pattern, I'll be due to start an episode in four to six weeks.

I hope I'll soon be able to report him having success, so keep your fingers crossed, one and all.

Thanks to you lot for your helpfull advice

Andrew

Andrew, that's great news!  It is such a relief to find a neuro who not only gets it, but gets "us" as well. I got so tired answering questions like, "so I understand CHs really hurt, huh?" Yup, doc, they really hurt. Good luck on the O2, and if you can, care to share what your med regimen will be? God bless! lance

That's great news, it's such a relief to get to work with a doctor who gets it. You're gonna love 02!

Joe

Great news!! Maybe the day is coming when your experience will be common place and the dark ages of Docs not knowing, listening, accepting will be only a memory!
[smiley=clap2.gif]

Andrew,

Sounds like an NHS success story in the making...  Great News!

If you haven't seen it yet there's a relatively new NHS Home Oxygen Order Form (HOOF) partially filled out for cluster headache sufferers.  I've attached a copy.

Take care,

V/R, Batch

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That's BLOODY GREAT NEWS Andrew!

So Happy and relieved for you Mate!  ;D

Gary

I don't know how many times I've read of people seeing a neuro and getting very negative results, so seeing a sucess like this is great.

You also did really well in being prepared for your meeting, knowing a lot more about CHs that probably 95% of people who see a neuro and having your print outs to be able to back up your knowledge if required.

I hope that this results in you getting a much better control of your CHs and you'll love having oxygen once you get to use it to abort CHs.

Soon instead of having to ride out a CH, you'll have killed it off and be able to sing "On Ilkla Moor Baht 'at" instead.


Quote:

Wheear 'ast tha bin sin' ah saw thee, ah saw thee?             On Ilkla Mooar baht 'at         Wheear 'ast tha bin sin' ah saw thee, ah saw thee?         Wheear 'ast tha bin sin' ah saw thee?             On Ilkla Mooar baht 'at             On Ilkla Mooar baht 'at             On Ilkla Mooar baht 'at         Tha's been a cooartin' Mary Jane         Tha's bahn' to catch thy deeath o` cowd         Then us'll ha' to bury thee         Then t'worms'll come an` eyt thee up         Then t'ducks'll come an` eyt up t'worms         Then us'll go an` eyt up t'ducks         Then us'll all ha' etten thee         That's wheear we get us ooan back

I'm hoping to be singing this on Ilkley Moor (with or without a hat) in August sometime too.

Mike...
LMFAO !!  ;D

Can just hear the tune now man! Surreal!

Gary

Just as a point of interest - the NHS does seem to be getting the message.

Having recently moved, I now have a switched on GP who is if not familiar, at least well aware, of the condition. I have no problem with prescriptions for industrial levels of injectable imigran and he got O2 organised and delivered 8 days after I provided the HOOF form from OUCH(UK) together with the supporting information.

Result.

It's early to say how effective the O2 is since I've been away from home for the last week or so - but rest assured, I'll be trying it and reporting back!

PFDAN  CB

Hi CB<
More brilliant news for you!
Cant wait to hear from you re O2!

Tidy!   ;)

Gary

Thanks for the form Batch. N once more, thanks to all of you on the site for your help and support.
Mike, Drop me a line to know when in August. Then I can make sure I'm as far from Ilkley as possible, without leaving Gods own county!

Yes, it is good news. Couldn't have done it without the resources of both this site and OUCH(UK).

Initially, GP was saying I'd have to see a neuro to get it prescribed (this would be the 5th neuro consult!). I was able (thanks to the above mentioned resources) to point out to him that he could do it without reference to anyone else! He was happy to do this once he'd seen the references needed.

That, coupled with the info on the studies, a HOCF and partially completed HOOF (thanks OUCH) was all that was needed.

Next thing I know, AirLiquide (the local supplier) was ringing to arrange delivery. Nice big bottles (according to the chart in the pamphlet left they should give >2.5 hours use), 15L/Min regulators and appropriate masks.

Cheers, CB

Andy T wrote on Mar 9^th, 2011 at 7:58am:

Mike, Drop me a line to know when in August. Then I can make sure I'm as far from Ilkley as possible, without leaving Gods own county!

Knowing the quality of my singing that sounds a sensible move. I could actually make good money from busking as people would pay me to stop!