Hurtinhead Posted June 26, 2014 Share Posted June 26, 2014 I'm new to this site, but wanted to share my recent experience. Hopefully this will help someone else suffering from CH. I have been getting Clusters for 23 years now. I remember the first attack I had as if it were today. I was misdiagnosed for the first 10 years of the onset of these attacks as sinus headaches and then as traditional migraine until I saw a neurologist that told me I had CH. I have tried just about every type of medicine there is to treat this condition. I am currently in the 4th week of a cycle of attacks and I'm getting 5-6 headaches per day. I usually use Triptans for relief of the pain and start back on Topamax to stop the cycle. Frova is what works best for me. However, it is extremely expensive and my insurance will not fill it as fast as I need it. I got my family practitioner to prescribe Oxygen to me last week and just picked up my 1st tank yesterday. I cannot believe that I wasn't given this before now. IT WORKS. I have been using it for two days now and I have not gotten into a full blown attack since. The only problem is that I will probably run out tonight and I am due for at least 3 more headaches before I can get more tomorrow. I have just started reading about Clusterbusting and I'm new to all of this. How do I get this stuff? I will try anything at this point to stop this cycle. I have noticed that the older I get the longer the clusters last. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 26, 2014 Share Posted June 26, 2014 Amazing, isn't it, that oxygen? It's so enraging that it's taken 23 years for you to get it. While you're out of O2, you might try an energy shot or energy drink at the first sign of an attack. That can abort an attack, or significantly reduce it. Also, many people chug one before they get on the O2. Try staying on the O2 for a few minutes (5-10) after you've aborted an attack. That often seems to prevent some future attacks. You'll need a bigger O2 tank, too. Multiple tanks. Some big M tanks for home and some smaller E tanks for work/car. Sounds like you got an E. More advice about O2 can be found in the ClusterBusters Oxygen Page, at the black and white MENU tab on the left side of the page. Here's the basic info about busting: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Other numbered files in the ClusterBuster Files section of this board will tell you more. How do I get this stuff?  We can tell you how to get seeds -- getting other stuff, if you want it, would be pretty much up to you. You would have to stop the Frova (I'm kind of surprised that a triptan pill helps you; most people aren't helped by them, only by injections) and probably the Topamax, too, since they interfere with busting. (If you're getting 5-6 attacks a day, I guess we have to wonder how much those drugs actually do help you.) Just scratching the surface here -- ask any further questions you have! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 26, 2014 Share Posted June 26, 2014 I have noticed that the older I get the longer the clusters last. Ugh. Hate it when that happens. It's not uncommon either. I hope you are also seeing the positive side of the way episodic CH can morph over the decades, where your remissions between cycles last longer too....? Quote Link to comment Share on other sites More sharing options...
Ajax Posted June 27, 2014 Share Posted June 27, 2014 You have found the site that will change your life. These guys are the best! Quote Link to comment Share on other sites More sharing options...
weatherman Posted June 27, 2014 Share Posted June 27, 2014 Hurtinhead, Glad to see you've made your way to ClusterBusters. Sorry you had to make that search. Help is on the way. SHEESH!.....23 years and no Oxygen! The amount of unnecessary suffering that some of us poor clusterheads go through is amazing. This site lead me to Oxygen 5 years ago and I'll never be without it. Home, work, car ...... I'd marry that darn tank-o-gas if it wore a skirt. Please get set-up with the right mask (Optimask) and a dependable supply. The advice you'll receive from CHfather is absolutely crucial and accurate. O2 is a miracle that cannot be ignored. Energy Drinks work wonders for some. I go for cold water and cold air if available. Alternate gulps of ice water with the O2. Cheap, easy and no side-effects .... can't beat that! Save the Triptans (Imitrex Injections) for last resort. Lower doses than what are available by prescription work for many of us. Lots of advice on every subject you can think of ... and it's all good. Fire away with all the questions you have. Pain-free days to you weatherman 8-) Quote Link to comment Share on other sites More sharing options...
Hurtinhead Posted June 27, 2014 Author Share Posted June 27, 2014 Thanks for all of the encouraging advice. I am glad to finally have a place to discuss my issues with CH and actually have others that understand that it's not "just another headache". Thanks again and I look forward to helping others cope with CH. Quote Link to comment Share on other sites More sharing options...
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