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HazBaz

SUCCESS!

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Hi all,

I know it's been a while. Been extremely busy in the background and have had some successes I will share....

Haven't had an attack since 20/11. So almost a month. Looks like 240er verapamil and an 80 when I get up and when I go to bed have had a positive effect.

After being told by my doctor that he couldn't prescribe me O2 or SC suma., he got a letter from the neuro saying they couldn't see me, so he did some research using the BASH guidelines, beavered away on my behalf and sorted me a proper CH geared O2 'scrip (big tanks, non rebreather mask, 15lpm flow rate) and some SC suma. pens.

Then I got a letter from the neuro saying they would see me. Bonus. I can say I'm up for trials of new meds (within reason of course).

I've also been massing grow kit. Spores. Canning jars. For research purposes only of course. Not botany!   ::)

Am going to start tapering my verapamil dose down. Maybe after Xmas.

Haven't had a drink on 6 weeks.... Boring!

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[smiley=thumbsup.gif] [smiley=thumbsup.gif] [smiley=thumbsup.gif]

So Happy to hear of your success and PFT!  Sorry about the alcohol situation, thats just something us headbangers live with though.  Great isn't it! YAY!! 

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Bit more info for those in the UK. Be sure to get a referral to your local NHS oxygen clinic if you get your O2 through the GP.

I went, had my O2 levels checked and the O2 nurse added ambulatory cylinders to my 'scrip. So I can have a couple of smaller cylinders with the same mask/flow valve to carry round in the car/holiday/work etc if needed.

I haven't taken advantage yet as fortunately am still out of cluster. Just the occasional 3/4 shadow headache, usually after a few beers.

Verapamil dose is down to just 240er/80mg in the morning.

Neurologist confirmed what I already knew. I have cluster headaches! YAY! Offered to review my treatment every 6 months and keep me informed of any revolutions in that field. Won't hold my breath.

He did mention DBS and Gamna Knife... I politely declined!

Am yet to do any botany and try busting for real... But I am young. There's hope yet! And plenty of time/vermiculite left in this ones stores!

Cheers. HB

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Yeas. Very comforting.... He almost said it with a smile on his face as if to say "I think you'll probably say no, but...".

Always a little disconcerting. But there you go!

Not had to use the O2 yet. Is it a little weird that I'm actually looking forward to finding out just how effective it is?   ;D

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I wish I could get spores. I live in one of the two states where I can buy a grow kit but not prints or a syringe. I may get a friend in another state to help. Good luck to you.

No one has any idea what it is like to have a headache every day, except for those who have experienced it.

I would not have known about this had it not been for an episode of Drugs Inc on Nat Geo one day. I finally would up here. I hope you get relief soon.

JB

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