cspringstd Posted January 4 Share Posted January 4 Hey All, I am hoping someone in Colorado has experience with a neurologist they could recommend. I moved back to CO in 2018 from Maryland and had been flying back yearly to see my neurologist at Johns Hopkins. I have been on methergine for a few years and it was working pretty well as a preventative. My neurologist warned that it would lose efficacy at some point, and it looks like that point is now. Unfortunately, my neurologist retired a couple of years ago and I need to find a new doctor that knows how to treat these things. I have had clusters for over 25 years and have been on every medication and treatment regimen imaginable (can't try psilocybin due to gov job) and methergine was the first preventative that worked. Sumatriptan injections work as an abortive (oxygen does not) but we all know that isn't a realistic solution long term. I appreciate recommendations anyone might have for Colorado doctors. I am in Colorado Springs but have no problem traveling to Denver or anywhere within a few hours drive. Thank you I'm advance for the help! Quote Link to comment Share on other sites More sharing options...
Karisa Posted January 5 Share Posted January 5 I see a pain specialist at CU Anschutz in Aurora for my migraines and cluster headaches. I see Rachael Rzasa Lynn. She is part of the Pain Clinic at University Hospital. I’ve seen her for about 10 years and she is great and listens to my concerns. She has no issue referring you to neurology or other departments if she feels it is needed. 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 5 Share Posted January 5 Glad you got that recommendation from Karisa! A few suggestions: For prevention, try the vitamin D3 regimen that has made a huge difference for many hundreds of people with CH. Headache Treatment Protocol Update - General Board - ClusterBusters. A neurologist is probably going to give you verapamil, which I'm sure you have already tried, or something else you have tried. D3 works better and is typically without side effects (actually good for you). If you're going to use an injectable triptan, learn how to split your doses: https://clusterbusters.org/forums/topic/2446-getting-partial-doses-from-sumatriptan-injectors-imitrex-imigran-etc/ So many people have said here that oxygen didn't work for them, only to have it work fine when they optimized their systems and methods, that I have to suggest that if you have NOT used a flow rate of 25 lpm or more, have not used the mask specifically made for people with CH (or maybe you even got the useless nasal cannula instead of an actual non-rebreather mask), and have not tried different breathing strategies, it might be worth it to you to try a fully optimized approach. (Also, it's important that the O2 is coming from cylinders, not a concentrator.) Quote Link to comment Share on other sites More sharing options...
CDog Posted January 16 Share Posted January 16 I see Dr Marius Birlea at UC Health at Anschutz. I have been seeing him for 10 years, very good listener. Quote Link to comment Share on other sites More sharing options...
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