HazBaz Posted December 14, 2014 Share Posted December 14, 2014 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! Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted December 14, 2014 Share Posted December 14, 2014 [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!! Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 14, 2014 Share Posted December 14, 2014 HazBaz, GREAT news on getting the O2... Done right, it's our #1 go to for abortive Hopefully you can stay off the trex and get to busting this thing to the dirt! J Quote Link to comment Share on other sites More sharing options...
gartozi Posted December 16, 2014 Share Posted December 16, 2014 Brilliant news pal that's a result good job well done mate Quote Link to comment Share on other sites More sharing options...
ToniEvo Posted December 29, 2014 Share Posted December 29, 2014 So pleased for you!! Well done!! Quote Link to comment Share on other sites More sharing options...
HazBaz Posted April 16, 2015 Author Share Posted April 16, 2015 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 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted April 16, 2015 Share Posted April 16, 2015 HazBaz, Isn't it so comforting how the docs want to cut on us... (said with extreme disdain). Glad to hear they have the O2 ready for you, you'll be self sufficient with your own medicine J Quote Link to comment Share on other sites More sharing options...
HazBaz Posted April 18, 2015 Author Share Posted April 18, 2015 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 Quote Link to comment Share on other sites More sharing options...
ixnax Posted April 25, 2015 Share Posted April 25, 2015 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 Quote Link to comment Share on other sites More sharing options...
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