Pixie-elf

I haven't had a migraine since I started busting with RC seeds. What they're saying is right though, if it's a migraine, it won't respond to oxygen, at all. Mystina

Here's the thing.... Serotonin receptors are involved in the cure... But the Triptans aren't the answer for it. The triptans, people are finding, are changing the clusterhead's cycles.... In a lot of cases, for the worst. I.E. it's extending some peoples cycles! This is the LAST thing you want! You should look at getting some RC seeds, or HBWR, Mushrooms, or LSD. Any of these treatments can break/bust your cycle, and make it easier. They're all safe, and effective. I started out with RC seeds, which contain LSA. If you want to know more about busting then please read The Clusterbuster Files, found here : http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files I highly suggest this thread : http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051922 Watch the video of Bob W. Second link down. It'll make a lot of things clearer. Good luck. Mystina

I think it's hard watching anyone with this suffer. It kinda rips your guts out. For me, the important thing is... I'm having less, and less hits like this with the busting. Maybe once a week now? Hell, I didn't even have to go to the hospital for about 2 weeks since the shrooms. I think the sinus congestion helped trigger this one. ETA: I've got like...3-4 more that weren't taken very well, or clearly if Natgeo would like them too. They're at different points in the hits and some came out weird. (I had the phone in my lap while rocking so it looked kinda funny in some.)

I generally try to be positive, but, since the busting, I've been a LOT moreso. I think it's partly because my life has gotten SO much better, and partly because the shrooms make me really perky. I feel great for days after a dose. I've also gone from being a recluse who felt like doing very little, to going out, enjoying life, and laughing. I think for me it's a combination of finally feeling somewhat like a human being again, and the feel good effects of the shrooms. Mystina

I had to take these myself. The reason there's no sound is because I was at the ER, and the ones I tried to take beforehand caught a crapload of sound... I'm a lefty, so this is reversed. Mind you, this isn't as severe as it used to be... but it was a bad hit considering I've been busting. http://smg.photobucket.com/albums/v171/pixieelf/?action=view&current=MOV006-1.mp4 Oh, this one wasn't muted. http://smg.photobucket.com/albums/v171/pixieelf/?action=view&current=MOV007.mp4 Watch the magic of the face twitching, and the eye popping open after the hit is over. My Aunt is talking in the background. Hope it helps out. Mystina

Talk to your doctor about getting off of the steroid. That stuff is dangerous to come off of yourself, you need to taper off. It can cause all kinds of problems, including a steroid crisis...where your body STOPS making steroids... Guess what the treatment is? More steroids. Be careful. Mystina

Awesome descriptions, and writing. Glad to see you back. It's normal to get aggravated and fed up hon. Mystina

PLEASE don't leave, there is help here! I'm chronic. I had between 3-8 hits each day. I say had, because I've been busting since Feb. 11th, started with RC seeds. We're all in this screwed up disease together. Try busting. If it works, you may be able to go back to teaching! What you do at home is your own damned business, and you can tell them it was a miracle of God, or whatever you believe in that the headaches stopped. Don't give up. There's hope. You can beat this, or at the very least get it to a point that you can live with... My doctors couldn't help me anymore either, so guess what? I started busting. You have choices. You don't have to go through it alone. We're here. Even if you don't talk to us, read what's here. Either way, I wish you good luck, and hope you find an answer... Mystina

Anybody doing this WHILE busting? Just wondering. If not, I'll wait until I've done all 3 doses to start. I just want to make sure it won't interfere. Mystina

Hi Arcan, glad you found us! Have you tried Melatonin? It helps a lot of people get through the night WITHOUT hits... It helped me. I stopped it after I started busting though. Mystina

Awesome, I'm so glad to hear that it went so well! Praying that you get many more than just 2 months! Mystina

Mmm, Texas Steak. I live here too so I might be partial... Wondering how it went too. Mystina

Hmm.... I was thinking that maybe it would be a crapshoot for me, I checked the bottle of my D3, and noticed it was 50,000 UI's and I took it for 7 days straight. No change in my HA's during that time. Maybe the Fish Oil needs to be combined for the effect? I'll talk to Mom when we go out later... Mystina

Happy Birthday Joe!

There's no way to order them and have them shipped overseas? That really sucks. :/ I just checked and saw that yes, it's illegal. There's got to be some place in Australia that sells the plant though. From what I read, it's naturally grown there... Hmmm... There's got to be some place in AU to get these. Maybe one of us can think of something.... Mystina ETA: At this point, what all have they tried her on? Someone might have a better suggestion for something to use in the interim. Is getting together the things to make a farm an option? What about checking for companies in AU that have HBWR?

I'm supposed to be getting a new phone in the mail this week. If I get a bad hit, I'll record it. I've also got pictures of me during hits, but right now have no batteries in my camera to access them. (I've got before, and after pictures from the ER.) Dunno if that would help any. Mystina

Honestly? I'd order some RC seeds while waiting for mushies. You can get results with such a low dose. You don't need to wait for them to come into season... a few days in the mail and they're at your house! Traditional meds can help, but why bother with it when we've got something that can cure it right here? Also, since beta blockers / verapamil / other prevents screw with mushrooms, along with seeds, etc. It's something you'd have to detox off of. We don't know what those drugs are really doing to us, the side effects are horrid... The side effects of seeds, shrooms, and LSD are a hell of a lot better in comparison! On top of this....there's signs that the preventatives and triptans are doing things to our cycles. Prolonging them. Possibly making them worse. I wouldn't risk it when there's a natural, effective, safe, and well researched alternative. Mystina

It's a damned good thing you said no to the enema!! That would have made things a LOT worse. The morning my appendix ruptured on me, I was wide awake... it ruptured at 3am. I waited til my Mom got up for my 5am meds and asked her for an enema, because we had some for a scope I was supposed to have done. She got a funny look on her face and said "No." I said "Appendix?" "Maybe, but I feel like an enema is a bad idea either way." They told her that if she had given it to me, it would have pushed the poison out that much faster. Damned thing was left in me for 36 hours before they found out there was a problem, the CT scan only showed it inflamed...they got in and had to chisel it out. ALWAYS go with your gut instinct. If they suggest an enema, or anything else and it seems like a horrible idea, DON'T do it. I had one doctor inform me he was going to do a catheter on me...against my will, and I informed my Mom that if that bastard dared to come into my room again, I was going to start grabbing things, and throwing them until he was gone. The most messed up part about that, was I saw a billboard with him on it about 3 months before and I was like "Wow, that's the most sadistic looking urologist I've ever saw... I'm glad I don't need one!" TURNS OUT HE WAS. After that I forced myself not to make any form of judgement on doctors until after I saw/talked with them, because bad things happen when I do that.... Mystina

I don't think I've read anything about horses, or any other animals having CH. Has anyone else? I think that might be one of the problems, it doesn't naturally occur in nature that we know of. I could be wrong... same problem happens with one of my conditions. They have to figure out some way to cause it in animals. (Which requires that they know how to cause it in us, I believe.) I think this was for some kind of neck problem... I'm not sure how the hell you'd tell if a horse was having a headache. My Grandpa always used to joke that salt water enema's cured EVERYTHING... His Mom firmly believed in laxatives and bowel movements. He said that when he was very little, she asked him if he had gone that day and he told her no... She gave him laxatives, and an enema. The next time she asked was the first lie he EVER told to her. OH YES MOM. I WENT. I laughed so damned hard. He said she would have loved me because I've had IBS with constipation since I was little. No! Laxatives, and enemas, have no helped my headaches... and I'm not willing to shove coffee or garlic up my ass. I'd have to tell your ex-mother in law, like Ting said "You do it first, I'll watch, and if it works, I'll try it!" Now, if one of you told me seeds worked better that way... I might consider it. But I'd need to hear about a lot of you using it first before I tried it. Mystina

When I ordered my mask from the CH.com store, it came with the mouth piece with it. You should also be able to buy them at medical supply stores, since they're used for breathing treatments, but I don't really know how you'd fit it to a bag, or if it'd be the right size to go with the Opti mask... Good Luck! Mystina ETA: Right now, I'm pretty goofy due to my pressure being up, so I couldn't read anything, but... If you didn't advise people NOT to get an oxygen condenser, or whatever the machines that make oxygen out of the air, you should. It's not 100% oxygen. I doubt it'd do any good.

Alright, so my Mom works as a waitress. Her coworkers have heard about my CH and such, and a few customers have overheard her talking about it with them. She had 2 guys come in with CH. I told her the next time, send them to CH.com, since there's a chance they could get referred over here... One told her that he uses a round pillow on his neck, sleeps in an uncomfortable position, but it takes the pressure off the nerves. We're considering trying this, if it doesn't work for me, it might work for Mom, since her neck is pretty messed up. (She's lucky not to be paralyzed. She fractured one of her cervical bones before.) ANYWAYS... everyone has a suggestion to help. This woman came in and was like "Oh, your daughter has headaches? This will sound crazy but take her to your vet! There's a technique they do on horses, on their necks. They can do it on her and it will cure her headaches!" One of Mom's coworkers, a woman heard and happened to have gone to school to become a vet and told her "OH, that might be in my vet book! I'll look it up, I could do it on her!" My Mom was thinking... Oh HELL NO. She told me, and my aunt and we all laughed. I know they meant to help... Number one, I DON'T want an inexperienced person trying to manipulate my neck. Number two, and I think this is most important, I AM NOT A HORSE. I just felt like sharing with y'all. Mystina

Awesome! Thanks for sharing!

The fact your CH's have gotten better doesn't surprise me. I would have recommended Potassium, like DG. I dislike gatorade, so I do V8. Pickle juice also helps leg cramps, too. I laughed so hard at this. I'd like to meet that queen. I know for a fact, too much b12 for me triggers some GODAWFUL clusters. My hematologist had me on the shots... I took them, then started getting the most horrible headaches from them. My body said no. Too many supplements/vitamins can be just as dangerous/harmful as not enough. Glad you're pain free! Mystina

Fire the GP if you can. That's crazy. I'd lay it out "You either give me oxygen, or I go elsewhere. I like your treatment of my other problems (or if you don't, say so.) but you admit it is effective..." ...I'd flat out tell 'em DON'T BE A LAZY ASS. It's my life on the line, not yours. WTF? If it works, why give me drugs? Sorry, hope your seeds get there soon! Crazy friggin doctors.... Mystina

My thought is this : Rebounds happen. If everyone suspects that triptans are effecting their cycles, for better or worse, I'm betting it's true. If I would have known how easy it was to deal with these headaches through busting before... I wouldn't have gone for any other treatment. My response was "Hallucinations? Oh hell no! DO NOT WANT." But now I look back, over 2 and a half years wasted trying the doctors approach, I could have saved myself so much pain! It's crazy that the neuro refused to check his blood levels until he was put on drugs for the CH. Why in the hell not? If a normal doctor refuses, you could always demand to be sent to endocrine to be screened. I think your plan is great! I'm hoping and praying that it's just rebounds, and that his cycle is ending. Mystina