Whooligun Posted February 23, 2015 Share Posted February 23, 2015 Hello...its been a while since I posted, but I wanted to share in case this helps anyone. A brief history...Im a 39 yr old male. Clusters started when I was 15 or so. Once or twice a year. Treated with triptans, painkillers, etc. 4 years ago, the headaches didn't stop. As part of testing, a small AVM (mass of nerves, veins, etc) was discovered behind my left eye (where the HAs occur). Most aren't discovered until the AVM bursts...causing major damage or death. I underwent gamma knife therapy & have a meeting this week (2 years after the procedure) & the AVM might be completely gone! Unfortunately the headaches are still there...lucky accident finding the AVM...but it was not the source of my pain. Saw a new doc 2 weeks ago...waited 2 years to get in...he is the head of all things headache in Canada...extremely knowledgable. He mentioned that while incredibly unlikely, there is a minute chance I could have suffer from hemicrania continua. He put me on indomethacin just to rule it out. Apparently if the indomethacin (in doc's words.."the Lexus of advils") works, its an indicator of hemicrania continua. I'm being cautiously optimistic, but after only 1 day, the headaches stopped. 5 days later and the only problems Im facing are the withdrawals of the oxy as I try to ween myself off. If you have headaches on one side, find that triptans do nothing for you, and are facing constant HA or a prolonged cluster, it might be worth asking your doc about trying indomethacin. Im holding off celebrating just yet, but after not having a clear day in 4 years....Im now on my 6th in a row. I had stopped believing I was going to be okay. I never imagined a single pill could stop them completely after 1 day. I hope this helps someone! Please pass it on...you never know! Have a great day & don't give up hope! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 23, 2015 Share Posted February 23, 2015 Wow that's good news Whooligun. Glad your doctor knows his stuff but sad that he makes patients with critical conditions wait 2 years. Uh oh I feel a rant coming on...here I go, watch out: The long waiting list for headache specialists can happen sometimes in the US too. Maybe it's different when someone is head of all things headache in Canada, but certain docs just can't think for a moment to put CH/HC type patients to the head of the line. Just not do-able while they treat 1000% less dire and painful headache conditions, as apparently they skipped class in med school on the day when the concept of triage was covered. And gosh they never have a single cancellation in 2 years where they can fit in someone in who is in a quite possibly suicidal state. I've personally encountered these types, and in my book they are severely negligent in this aspect of their practice and need to be called out big time. OK, back on track now, so indomethacin for HC, yep that's been discussed aplenty here lately, and it sure seems to work for HC'ers. I echo your call for those with the symptoms you mentioned to look very seriously at the possibility they could have HC as opposed to CH, while they're waiting the 2 years or whatever for their appointment. Ricardo recently mentioned guarana as something that could help mitigate the gastric upset often experienced with indo for HC BTW. Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted February 23, 2015 Share Posted February 23, 2015 Congrats on finding a doctor worth his salt. They are like gold dust. Indomethacin, interesting stuff that is. I use it occasionally when I'm worried about getting rebound headaches from all the Anadin I pump through my system. It's not touched my clusters or migraines, and does no more for my daily headaches than Anadin, stops the current one. I'm sure you know this by now, but don't take it on an empty stomach. No fun that. Any cure that works is a great cure if you ask me. MG Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 23, 2015 Share Posted February 23, 2015 Whooli, I'm so glad you're getting relief. I remember when you first came here. I'm am so sorry that we didn't mention HC and indo back then!!! Quote Link to comment Share on other sites More sharing options...
Whooligun Posted February 23, 2015 Author Share Posted February 23, 2015 Thanks for the tips about the stomach. Family doc is putting me on a PPI which should help. And don't worry about not mentioning HC...there are so many possibilities out there its crazy! Quote Link to comment Share on other sites More sharing options...
tangerinearmy Posted February 23, 2015 Share Posted February 23, 2015 joy Quote Link to comment Share on other sites More sharing options...
Whooligun Posted February 28, 2015 Author Share Posted February 28, 2015 So Im at day 10 & still no serious headaches...Id love to celebrate, but I just stopped my narcs after 4 years and am having a hell of a time. This is worse than quitting smoking + quitting codeine combined. My elbows & knees are constantly screaming to move...slept about 3 hrs last night...and I think its worse today. Lots of good advice & things to try tonight, but I think its gonna be a long few days. But when its over...no more narcs for me EVER. Hopefully Quote Link to comment Share on other sites More sharing options...
spiny Posted March 1, 2015 Share Posted March 1, 2015 Whooligun, I am so happy for your diagnosis!!!! Long wait but finally they got all your bases covered. That is something to celebrate. [smiley=tekst-toppie.gif] Coming off pain meds is no walk in the park. But it gets better and then you will feel so much better. Whole again was my experience. I was on them every two hours, the horrible ....codone bunch before my back surgery. Needless to say, I took something else for pain after surgery. Then, went med free. I feel your pain a bit on that one. Melatonin at night might help? I would try it personally. You will come out the other side and feel whole and yourself again. Very soon I hope. Hugs!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Whooligun Posted March 2, 2015 Author Share Posted March 2, 2015 Thanks Spiny. Friday night was terrible, Saturday was okay, Sunday night sucked. First day at work today & Im okay...hard to concentrate...wish my office was in the bathroom haha. Im going to be pretty proud of myself once this is over. Quitting smoking was tough, then quitting codeine was tougher, quitting oxy is gonna be a bit tougher, but after that, I should be able to do anything As long as the HAs stay away. Thanks for the support. Quote Link to comment Share on other sites More sharing options...
didgens Posted March 4, 2015 Share Posted March 4, 2015 just keep swimming Whooli !! Quote Link to comment Share on other sites More sharing options...
spiny Posted March 4, 2015 Share Posted March 4, 2015 Bad weekend!! > You will do it and be sooooo much better Whooli. You are right about getting off the Oxy. After that you will be able to do anything since you will have kicked some of the toughest stuff out there. Are you starting to get your legs back yet? Likely you will be like me in the future. 'Oxy? I would rather go it alone thank you.' All the best my friend. Better days are coming. Quote Link to comment Share on other sites More sharing options...
Whooligun Posted March 5, 2015 Author Share Posted March 5, 2015 Havent slept 8 hrs in a few weeks, but I did get 6 full last night. Restless legs/arms are over with (I think). Headaches are still gone. Stomach issues from Indomethacin, but Ive been taking a PPI, so that should be taken care of. Can I celebrate now? (mood changed to proud) Quote Link to comment Share on other sites More sharing options...
spiny Posted March 5, 2015 Share Posted March 5, 2015 There are three popular PPI's out there, so if one doesn't work well, try another? Nexium is the pits for me while Prilosec works well. Just a thought. You should be proud!!!! I am so happy for you. Celebrate? Of course. With a great dinner and a happy face for sure!!! Quote Link to comment Share on other sites More sharing options...
Whooligun Posted March 5, 2015 Author Share Posted March 5, 2015 Doc put me on Nexium...I will keep Prilosec in mind. Thanks for the 100th time Quote Link to comment Share on other sites More sharing options...
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