mom of a teen suffer Posted February 21, 2013 Share Posted February 21, 2013 My son is 17 and has recently been diagnosed (although he has had them for 5 years). We live in Virginia Beach, VA and have military insurance. We meet with a new neurologist Tuesday (who refuses to call me even though I've left 4 messages) that is out of the Naval Hospital. I need someone who has treated more than a couple patients with CH. I need an expert in my area. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 21, 2013 Share Posted February 21, 2013 So sorry to read about your son. I'm also the parent of a person with CH. At the bottom of this message, I've pasted a list of doctors in Virginia who have been recommended by people with CH. As you'll see, there's one in Virginia Beach. The most important thing for your son is oxygen, which any knowledgeable doctor will prescribe (but many, not being knowledgeable, do not). A flow rate of least 15 liters per minute and non-rebreather mask. To read more: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf Some things a doctor probably won't tell you about: - If he's having attacks right now and doesn't have oxygen, try an "energy drink" (RedBull, Monster, etc.) at the first sign of an attack. That helps a lot of people. (Coffee helps, too. The "energy drinks" contain caffeine and also taurine, which many people think also helps.) - There's a vitamin-D based regimen that has helped a lot of people. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 - Others have found good relief from a licorice root treatment: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 - Most people here have turned away from the "standard" prescriptions that you'll get from even a knowledgeable doctor -- verapamil, prednisone, imitrex, etc. These things can work, and it's understood that relief is your #1 goal right now. If you haven't been there yet, you should check out clusterheadaches.com, where these conventional treatments are discussed by many people. (Go to the "menu" tab on the left and you'll see a link to the ch.com message board.) We are also happy to help you here with any questions about anything. The methods that are discussed most here -- referred to as "busting" -- involve taking psychedelic substances which, many feel, treat CH better than conventional medications with fewer side effects. In many cases, they can be taken at levels low enough to have no psychedelic effect at all, but still have strong effects against CH. You son seems too young for this, so I am just alerting you. Here are those doctors. Bless you for stepping up for him. Now that he has a diagnosis, the challenge of CH will be a lot more manageable. And there are much better treatments on the horizon, from medications to devices. It could be that reasonably soon CH will be a manageable condition. We all pray in our own ways that that day will come soon. Alexandria: Dr. Stuart Robert Stark Neurology & Headache Treatment Center Charlottesville: Priscilla F. Potter, MD University of Virginia Health System Blacksburg: Dr. Steven D. Nack Neurology Services of Southwest VA Richmond: Dr. Michael Mareska Kara Clark, NP Neurological Associates Inc Virginia Beach: Dr. Allen R. Fenderson Holland Road Family Medicine Woodbridge: Dr. Naurang S Gill Prince William Neurology Inc Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 21, 2013 Share Posted February 21, 2013 Hi Mom O' Teen, So sorry your son has CH, but so glad CHfather stepped in here and gave you the best crash course you could possibly hope for to get you up to speed on how so many of us are proceeding. Lots of us have been frustrated indeed with what conventional medicine currently offers for CH, have felt need to take our care into our own hands, and have been successful with it. Of course so many of us immediately dismissed psychedelics for CH as insane quackery when we first heard of it, but Harvard Medical is all over this for good reason and we hope to see a 100% non hallucinogenic version (BOL-148) available by prescription before too long. For future reference, this Newsweek article on the subject is a very good read IMO: http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html There's nobody anywhere who can give you a more focused summary of critical info for CH relief than CHfather , so please study his reply very carefully. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 21, 2013 Share Posted February 21, 2013 You rock CHFather!!! Jeff Quote Link to comment Share on other sites More sharing options...
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