damiano Posted January 24, 2012 Share Posted January 24, 2012 Hello, I have been a CH for around 20 years now and am looking for a good Neuro to go and see. Im currently in the begenning stages of my bi yearly cycle and now that I have gotten older I sure am tired of this crap. I just want a good nights rest for sure. Yes yes and yes I have tried pretty much everything , the one thing I have not tried has been busting. The other night I took in about 15 red bulls and got some relief but man I sure wish I didnt have to beat my head aginst the floor anymore. Just wanted to know what Neuro you might be seeing in the Sacramento area. I currently see Dr. Stoody in Roseville who has pretty good track record with Ch's but this cycle the typical routine isnt doing its job. Had an ekg done too and they are concerned with heart so they have lowered my intake of verapamil and have told me no imitrex for longer than 3 days. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 24, 2012 Share Posted January 24, 2012 Damiano, OUCH compiles a list of doctors recommended by people with CH. There are only two listed in Sacramento, but there are a lot of others in California in the overall list, which you see here: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-06-2012.pdf I guess most folks here would be pessimistic that you're going to get any real help from a neuro, but of course it's worth a shot. The only "good" thing about your current situation is that if you have to stop imitrex and cut back on verap, you're detoxing for busting. You say (in your other message) that you've read a lot here, so I assume you have at least a general orientation to busting, but please ask any questions you may have. Yes yes and yes I have tried pretty much everything   It sounds like this subject might just tick you off, but I'm going to name some things, and you can just not answer, or respond if any of them interest you. Doesn't sound like you have oxygen. For some people the "standard" 15lpm/ standard non-rebreather mask (which I assume you have or have had) doesn't work, but higher flows/better mask/demand valve do work. The anti-inflammatory vitamin D3 regimen has helped a whole lot of people, often quite quickly: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 We just had another report from someone for whom the licorice root regimen worked really well: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Another long-time sufferer reported recently that kudzu in combination with D3 (and busting) has helped him a lot. You can see that thread here: www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1326294637 Okay . . . Just trying to think of something for the short term. Quote Link to comment Share on other sites More sharing options...
damiano Posted January 24, 2012 Author Share Posted January 24, 2012 Damiano, OUCH compiles a list of doctors recommended by people with CH. There are only two listed in Sacramento, but there are a lot of others in California in the overall list, which you see here: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-06-2012.pdf I guess most folks here would be pessimistic that you're going to get any real help from a neuro, but of course it's worth a shot. The only "good" thing about your current situation is that if you have to stop imitrex and cut back on verap, you're detoxing for busting. You say (in your other message) that you've read a lot here, so I assume you have at least a general orientation to busting, but please ask any questions you may have. Yes yes and yes I have tried pretty much everything   It sounds like this subject might just tick you off, but I'm going to name some things, and you can just not answer, or respond if any of them interest you. Doesn't sound like you have oxygen. For some people the "standard" 15lpm/ standard non-rebreather mask (which I assume you have or have had) doesn't work, but higher flows/better mask/demand valve do work. Have O2 sorry I didnt state that. Was a pain in the butt to get but have it. I have used it for about 10 yrs now. The anti-inflammatory vitamin D3 regimen has helped a whole lot of people, often quite quickly: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 this is worth looking into, and I will read more on it. We just had another report from someone for whom the licorice root regimen worked really well: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 I have also given this thread a good reading this morning and am thinking about it. But i would like to bust I think. Another long-time sufferer reported recently that kudzu in combination with D3 (and busting) has helped him a lot. You can see that thread here: www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1326294637 Okay . . . Just trying to think of something for the short term. Thank you for your response. I have been trying to get a referal of sorts to see Goadsby since he is very near to me, I only live about an hour from the SF area. Quote Link to comment Share on other sites More sharing options...
damiano Posted January 24, 2012 Author Share Posted January 24, 2012 Also, thank you very much for the link for the doc's I go to ouch all the time and didnt know if someone might have a different person they see that is not on the list. I do get tired of going to see a neuro for the same result. Last week the guy gave me a shot in the butt and said it would help, he said it was a makor anti - inflamatory. Needless to say didnt work. Red bull has become my friend but what I thought was strange is last night at 12:17 like clockwork I was woken up by a major kip 9 (actually very night is my major cluster) I was out of red bulls but slammed canada dry ginger ale, i dont know why but instead of it lasting for almost 2 hours i got the pleassure of one hour. Almost 20 years of this crap and I am so tired of it that I am at a point where I am ready to try to bust this... Quote Link to comment Share on other sites More sharing options...
damiano Posted January 24, 2012 Author Share Posted January 24, 2012 I thought yesterday wow this is so cool that the major news outlets had this article, i know it talks about depression but later down toward the bottom of the article it talks a tad bit about cluster headaches http://www.msnbc.msn.com/id/46105129/ns/health-mental_health/ Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 25, 2012 Share Posted January 25, 2012 Just wanted to check in here to confirm that you're using high liter flow 100% O2? (Seems most doctors that will prescribe O2 are still prescribing low flows around 10 LPM with a canula or rebreather mask, and aren't aware that liter flows at 15 to 45 LPM or so with a non rebreather mask are MUCH more effective for so many of us). Quote Link to comment Share on other sites More sharing options...
damiano Posted January 25, 2012 Author Share Posted January 25, 2012 Just wanted to check in here to confirm that you're using high liter flow 100% O2? (Seems most doctors that will prescribe O2 are still prescribing low flows around 10 LPM with a canula or rebreather mask, and aren't aware that liter flows at 15 to 45 LPM or so with a non rebreather mask are MUCH more effective for so many of us). yes i had to take him stuff form ouch and form here to show him, in fact while in his office i made him go to these websites. he was shocked and had no clue about this site or ouch. he was trying to show me what he said were up to date treatments in the database but he didnt have all of the newer stuff form ouch or form here. I saw him bookmark it so i thought that was a positive thing. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted January 26, 2012 Share Posted January 26, 2012 Good on you for showing your doctor these websites. Good on him for bookmarking them. Now let's hope he spends enough time on them to bring his own understanding up to date. Only then can he be a positive force for the CH community. Quote Link to comment Share on other sites More sharing options...
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