davyg40 Posted March 13, 2011 Share Posted March 13, 2011 New to the site. Hoping there is some alternative meds as I'm getting fed up with dead legs. Triptan helps. Verapamil is a placebo and waste of time. Tried smoking weed with mixed effects. What can I do as can't seem to get o2 prescribed or am I missing a trick. All the best. Davy Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted March 13, 2011 Share Posted March 13, 2011 Welcome Davy! So sorry to here you are suffering, but hopefully you will find some relief here! It helps alot if you could give some more info on yourself. How long have you had CH? Chronic or Eposodic? Are you in the states? What current medication are you taking? I am sure help and hope is on the way! PFD and N to you! Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 13, 2011 Share Posted March 13, 2011 can't seem to get o2 prescribed Davyg, you really, really want to change that. May I suggest that you read sections 1, 7, and 9 here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790/ -- and ask questions.  And maybe you want to try licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Not ruling out other options you might find here -- just saying oxygen is a must and licorice root might be a good possibility. Some newer licorice root testimonials at the end of this long thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254 Quote Link to comment Share on other sites More sharing options...
davyg40 Posted March 13, 2011 Author Share Posted March 13, 2011 Had ch now about 9 years now. Has been stated by Dr Paul jarman a neurolagistar great ormond street hospital London as severe ch. Am injecting sumatriptan and taking 120-160mg of Verapamil. Am having 3-5 attacks a day. Jab takes 20 mins to work. Can't seem to get o2 prescribed here unless my Dr is a tight arse. Weed is weird one as sometimes I think it could trigger an episode. Who knows, all I know is that the pain is ridiculous and that the java make me feel poo. The pain intensifies 2-3 fold after jab then slowly goes. Quote Link to comment Share on other sites More sharing options...
davyg40 Posted March 13, 2011 Author Share Posted March 13, 2011 Java means jabs. Sorry Quote Link to comment Share on other sites More sharing options...
les genser Posted March 13, 2011 Share Posted March 13, 2011 Davy; first, welcome.. second, I presume your being here means you are unhappy with what you are doing, so I may be beating an already deceased mule; but if you are taking triptan shots and verapamil and experiencing 3-5 hits a day, why are you bothering taking them? Not only are they not apparently helping you, in my admittedly biased opinion they are probably actively hurting you through rebound and ripple. Find someone to prescribe the O2 or get creative...there's a whole raft of O2 experts here, and most C heads swear by it. Pot is a heavy trigger for many C heads, myself included but it is sporadic (at least in my case) and not as sure a thing as alcohol. Your doctor sure sounds like a tight ass. He's certainly a rubber-stamp prescriber. We have another expression over here for this type, you may have heard it... it starts with "dick" and ends with "head". Welcome aboard. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 13, 2011 Share Posted March 13, 2011 Can't seem to get o2 prescribed here unless my Dr is a tight arse. What your doctor is, is a cruel idiot. If you look at the first of the references I suggested, you will see that oxygen is the first-line abortive for CH in the European standards (I gather you're in London). To quote myself (with full credit to Bejeeber) from that document: "Note also that based on this research the European Federation of Neurological Societies lists inhalation of oxygen as the abortive of choice for cluster headaches in its official guidelines. The guidelines state: "The first option for the treatment of acute attacks of cluster headache should be the inhalation of 100% oxygen with at least 7 l/min over 15 min . . ." (It also lists sumatriptan injections.)" You can read the guidelines here: http://www.guidelines.gov/content.aspx?id=10471 . 7 liters per minute is widely considered to be too low of a flow, however -- and the summary chart of recommendations within the guidelines says 15 lpm. This is the end of my exhortation to you. Needless suffering is your choice. It doesn't hurt your doctor a bit. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 14, 2011 Share Posted March 14, 2011 Hi Davy - welcome, and sorry to hear that you're a member of our special little club. Have you had Ch for 9 years continuous as a chronic, or in episodes that come and go? I understand why you use the jabs - they abort the attacks. I think I've jabbed myself with ohhh, a few metric tonloads of imitrex since it was introduced, lucky enough not to have experienced the complications that others have with it. That said, I'm really in the same camp with the other responders here so far, advocating O2. My last 2.5 month episode before I started clusterbusting I used O2 as my primary abortive, and imitrex jabs as a backup only if the O2 didn't work. Between that and some slightly effective Neurontin as a prevent I got through the episode without having to experience a single full blown / full length attack. That was cool with me! (there was some 20 minute long K8 action to enjoy at peak cycle before imitrex kicked in, but that sure beat the hell outa 3 hour long high kippers I would've otherwise been looking at). Despite that unusual level of success, I am also very convinced that busting is the best way to go, with the possibility of knocking cycles out altogether, and the goal of attaining zero pharmaceutical intake. RC seeds or mushrooms sound like they'd be candidates for you - please check out the busting instructions link that has all kinds of info on the subject, and continue to hit us up with any more questions : http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 14, 2011 Share Posted March 14, 2011 Davy, Sorry to hear you're in a bad cycle. Your doctor being an arse is quite common sorry to say... O2 if taken early when attacks start is 100% effective for me within 10 minutes... Flat put.. You NEED O2. Cheers, Jeff Quote Link to comment Share on other sites More sharing options...
davyg40 Posted March 14, 2011 Author Share Posted March 14, 2011 Thank you all so much for your time and knowledge. Am goin out today to kick some Dr arse. Not gonna budge from his office until he has prescribed me with o2 let alone suggested it. My neurolagist has told me to get it thru my local Dr who last time I asked said it was down to funding. Fuck that ill pay myself. Gonna look into dc seeds and licorice see if that helps. My chat seem to start end of Feb and last about 2-3 months. Oh and I'm a pro driver which is lots of fun during attack andafter a jab. My we are a lucky bunch aren't we. Thanks all ava good week. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 14, 2011 Share Posted March 14, 2011 Good luck Davy! Keep us posted as to your success! Cheers, Jeff Quote Link to comment Share on other sites More sharing options...
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