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Andy T

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If its not Brok, Dunt
try fix it!

Posts: 39
Yorkshire, England
Gender: male

I Don't Believe It!!!
Mar 8^th, 2011 at 7:42am

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

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: I Don't Believe It!!! Reply #1 - Mar 8^th, 2011 at 7:48am 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
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I Don't Believe It!!! Reply #2 - Mar 8^th, 2011 at 8:06am 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
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Glassman CH.com Veteran Offline I Love CH.com! Posts: 203 Ohio Gender:	Re: I Don't Believe It!!! Reply #3 - Mar 8^th, 2011 at 8:52am 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!
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: I Don't Believe It!!! Reply #4 - Mar 8^th, 2011 at 9:26am 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
Back to top	« Last Edit: Mar 8^th, 2011 at 9:27am by Batch » Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or (230 KB \| 2 ) You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there IP Logged

Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: I Don't Believe It!!! Reply #5 - Mar 8^th, 2011 at 9:36am That's BLOODY GREAT NEWS Andrew! So Happy and relieved for you Mate! Gary
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Mike NZ

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Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: I Don't Believe It!!!
Reply #6 - Mar 8^th, 2011 at 1:27pm

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.

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: I Don't Believe It!!! Reply #7 - Mar 8^th, 2011 at 4:57pm Mike... LMFAO !! Can just hear the tune now man! Surreal! Gary
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ClusterBuck

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We have met the enemy,
and he is us.

Posts: 10
Clanfield, Hants, UK
Gender: male

Re: I Don't Believe It!!!
Reply #8 - Mar 9^th, 2011 at 5:37am

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

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If you think nobody cares if you're alive, try missing a couple of car payments.

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: I Don't Believe It!!! Reply #9 - Mar 9^th, 2011 at 6:47am Hi CB< More brilliant news for you! Cant wait to hear from you re O2! Tidy! Gary
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Andy T CH.com Junior Offline If its not Brok, Dunt try fix it! Posts: 39 Yorkshire, England Gender:	Re: I Don't Believe It!!! Reply #10 - Mar 9^th, 2011 at 7:58am 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!
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ClusterBuck

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We have met the enemy,
and he is us.

Posts: 10
Clanfield, Hants, UK
Gender: male

Re: I Don't Believe It!!!
Reply #11 - Mar 9^th, 2011 at 8:01am

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

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: I Don't Believe It!!! Reply #12 - Mar 9^th, 2011 at 12:23pm 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!
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