Mum3115 Posted August 21, 2018 Share Posted August 21, 2018 I only became a member on Clusterbusters for a couple of weeks, but I cannot tell you how important it has been to be a part of this community. Today I took my son to his first appointment with a neurologist specializing in headaches. Quiet, soft spoken and required a little probing from our end but we left with hope. I was so delighted that he actually recommended Clusterbusters as a resource for help. He shared all the options we had to us, wrote a script for O2 with no hesitation, imitrex, and spoke to us about busting with seeds and mushrooms too. He also spoke with great optimism about Aimovig which just got approved in Canada. He said he’s had cluster patients on it during trial with great success! There is hope!! I have to thank CHFather, Batch, and Clusterheadsurvivor for all their support and guidance. I don’t know what I would do without this forum and their support. 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 21, 2018 Share Posted August 21, 2018 THAT...is VERY good news. Lots of folks 'happy dancing" out here. A physician who is an advocate and apparently up to date in CH treatment! Would you mind sharing the name and location of this Doctor? ...many folks come here looking for exactly what you have found. Best Jon Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted August 21, 2018 Share Posted August 21, 2018 Very cool indeed! Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 22, 2018 Share Posted August 22, 2018 (edited) Regarding the O2, I would recommend that you contact the oxygen supplier in advance and make sure that they understand that he has CH and has specific needs. Specifically -- tanks of oxygen, not a concentrator. I say tanks, plural. At least one very big one (an M or H tank) and one smaller, more potable one (an E tank) for the car or work or whatever. These tanks require different regulators, so you'll need regulators for both. The regulators should go up to at least 15 liters per minute; if you can get 25lpm, go for it. And a NON-REBREATHER mask. Preferably, a mask for each tank. They're cheap. A lot of oxygen suppliers never deal with a CH patient and have no real idea what is needed (some of it might be specified in the prescription the doctor wrote, but most won't be), so you have to check and maybe insist, so they deliver the right things the first time. You should seriously consider ordering the mask that is made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit It will help him abort attacks faster. If the people who deliver it are more than just delivery people, have them set it up and show him the basics of using it. Racer is one of the real O2 experts here (he teaches sessions about using O2 at the ClusterBusters conferences), so he or others might have something to add. Edited August 22, 2018 by CHfather Quote Link to comment Share on other sites More sharing options...
Mum3115 Posted August 22, 2018 Author Share Posted August 22, 2018 Thanks! I already bought him the clusterkit mask and we will arrange for the oxygen first thing in the morning. Hopefully they will set us up and teach us everything we need to know. Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted August 24, 2018 Share Posted August 24, 2018 Mum3115, check your messages. Quote Link to comment Share on other sites More sharing options...
Mum3115 Posted August 24, 2018 Author Share Posted August 24, 2018 Thanks Racer - great information! I will let you know how it goes! Quote Link to comment Share on other sites More sharing options...
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