Whooligun

Doc put me on Nexium...I will keep Prilosec in mind. Thanks for the 100th time

haha yep

3 weeks ago was given Indomethacin to try after having a 4 year "cluster headache". It worked. No more headaches. I used to suffer from clusters, but am now diagnosed with Hemicrania Continua. Or maybe both. Who knows? At the very least, as mentioned above, you should mention Indomethacin & Hemicrania Continua to your neuro/doc. Good luck.

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)

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.

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

Headache sufferers are the toughest people on the planet. That's not a wall in front of you, it's a staircase. Life's a bit tougher, but you deal with it. Because there's no other option & because we are all tough mfers >

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!

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!

My shrink had a good point about the pain. Ive been chronic for 4 years now, and chronic pain leads to depression, which leads to more severe pain since youre so run down, which leads to more depression, etc. Being aware and in control of your thoughts is step 1!

Thanks again...a bit better today until an hour ago...started getting the shakes. Man...I feel terrible...I cant believe my life got to this point Started seeing a shrink too...he thinks chronic pain leads to depression/anxiety, which makes the pain worse, which makes the depression/anxiety worse, etc Im tired of being high from painkillers, being in a daze and not being myself. I havent been myself in a while. Doing whatever it takes to find myself again for my little girl. I want to be a great dad. Sorry for the cheese haha. It just feels good to get it out sometime!

Baby is here, 7 weeks old. Life is great, she's healthy and beautiful. Want to start busting soon and have been weening myself off codeine contin & percocets to prepare for 5 days med free before I bust. The problem is, Ive had 2 pain free days in a row for the first time in 4 years. Sounds nice, but I am going thru withdrawls for the first time ever and they are terrible. Feels like the flu: wicked diarrhea, zero energy, restless legs, can't sleep. I feel awful. I have taken a couple perks just to feel better, but this is a brand new realization for me. I have a major battle ahead of me. Anyone have some good methods of helping the withdrawl period??? I read about loading up on immodium, so thats my first step.

Happy Thanksgiving from Sault Ste Marie!

Wife is due any day, so Im gonna give it a couple months before I try the 5 day busting. I would hate to be out of my mind in the delivery room! Can you imagine a worse scenario for a guy on shrooms? haha Where in ON Cluster? SSM here.

And by the way...thanks Dan. Watching your story convinced my wife and I that this was what I needed to do.

Gonna have to ween off my regular meds and try again. Our first baby is due in 10 days, so I'm gonna try ASAP before the big day! I'll load up the iPod and leave out the movies this time. Tull will be on there I actually saw them play at the Fox theatre in Detroit. Very fond memories. Any suggestions for the crazy gut rot?

Thanks for the great info & advice. Ive been avoiding triptans anyways because of the AVM, but they didnt really work anyways. There is no way in hell I could be without any pain meds for 5 days though. Ive been battling this cluster for 4 years. I havent had a pain free day once. I will try again with the fungi, but will make a major attempt to limit my meds before so.

Thanks everyone. Was not sure how much to take, so I started with a gram. Felt nothing after 45 mins, so the wife & I walked the dog for a 1/2 hr. Felt nothing, but the second we hit the driveway and I stopped walking, everything else kept moving haha. I felt like my whole body was broadcasting at 1000%. We watched the 1st Indiana Jones, then Jaws. Movies were crazy weird, but I was happy for the distraction. Even though some parts were fun, I prefer not to be so far out of my own brain. Anyways, I slept well that night. Next day I felt clear as a bell, but still ended up taking my usual doses of meds due to the constant headaches. I did have some ultra clear moments however and felt incredible for the first time in a long time. Headaches like usual yesterday, but today, so far, no pain meds. Feeling good. Im assuming it will take more than one dose, so I was wondering how often you guys think I will need to medicate for it to effectively kill the headaches, and also how often do people take them to keep them at bay? Thanks again!

Its been a long time. The last time I was here, I had just found out about my AVM. Since then I underwent Gamma Knife treatment, and have had my 6 month MRI, which showed that the AVM has shrunk by 40% already! Very happy news, but my headaches are worse. Its been about 4 years steady now. Used to be once a year, but now they are constant. I have done everything my numerous docs & neurologists have recommended & prescribed, but tonight I finally try the fungi. I found a good steady supply of numerous strains, so I plan on giving this a serious attempt. I'll post my experiences here, in case it helps anyone out, and to anyone that remembers me, hi! haha

Any news?

Sounds good in theory. I hope you discover a good and safe technique! What about eating a hot pepper? That would probably just double my swearing output though

Has the child had an MRI?

The loving surgeons (who repeatedly checked their iphones impatiently during our post-op consult), said they were going to set it up for us. As we were leaving the hospital, my wife and I already knew that wasnt going to happen. So we are waiting for my family doc to come back from vacation to get her to make the appointment for us. The specialists could care less about my pain or how it has affected every aspect of my life. To be fair, their job is avm removal, not pain management. It was a pretty bad feeling though to have my life just shrugged off like that, but luckily my wife is a higher up in our local medical community and the docs here absolutely love her, so I get treated with 100% urgency. I feel horrible for other people who have no one on the inside and are forced to rely entirely on the system. What a powerless feeling that must be.

Robert, so sorry to hear about your AVM. Wha a terrible spot for it (not that there is a good spot). Thanks for the info. I'm holding out hope the avm is what's causing my headaches, since I can feel the avm in my head. I'll definitely talk to my doc about those meds though. Brad, good luck! As much as you want answers, I hope your MRI comes back squeaky clean.

Exactly what I was hoping for! Good luck and thanks for the well wishes.