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Everything posted by Pixie-elf

  1. Mainly the burnout reports I recall have been from middle aged CH'ers where it runs in the family and they say their parent's CH had burnt out. I wonder if the likelihood of CH burnout depends any on how young the CH'er was when it started? I suspect it does, but I guess that falls under the category of hunch, as I have nothing resembling hard data to back it up. Maybe it decides "You're old. I haven't gotten you to kill yourself yet. I think I'll let something else do that now."
  2. Honey, try the RC seeds. They'll give you a chance. I was at the end of my rope when I came here. This place has saved my life. Mystina ( Sorry I don't have much more to offer, kinda out of it at this point. x_x )
  3. I can drink whenever I want. Alcohol doesn't trigger me. Used to when I tracked my attacks, I checked it. That's why I when I was on seeds I'd mix it with alcohol. I feel super lucky not to be triggered by it.
  4. (I was writing this up while you posted yours, and it posted mine and I didn't see you'd updated....) We can't help but worry for you hon, you're a part of our family! Now on to my post.... Renee, I'm a 27 year old woman. I still need my Mom. I still needed my Papa (Grandpa) when he died when I was 25. He was my father figure, the man who raised me. I would have given years off of my life to have kept him alive for longer. I know that when my Mom's time to go, I'll make the same offer to God. To beg him to take something from me instead, anything. You don't stop needing your parents because you're grown. If something has happened with you and your son... reach out to him. He could turn out to be someone who would help get you through this. Before you turn this idea down... I get that you don't want to share your life because it'd be hard on someone else... but you have got to get over that. I know you don't want to feel like a burden... But tell me, is it a burden when you help someone out, and make THEM feel better? Usually no... it makes you feel better inside. Just because you are in horrible pain, and it's scary to see, does not mean that it's going to break the person seeing it. I know it feels like it will, but trust me... Yes, my Mom is scared horribly at times during my really bad hits, but the fact is, she knows she can offer me comfort by being there for me. If nothing else, I know I have her. Does your Son live anyplace near you? Or is there any chance you could go stay with him for a while? Just wondering... I could go into what all it would do to your son if you went with suicide, but I think you have a good illustration from Ron. Suicide, while over quickly for you, leaves everyone else a wreck. I can tell you exactly what it did to my God-sister's family. If nothing else, Renee, let us support you. We might be far, but we care. I'm sending you love and well wishes. I wish I lived in England so I could come over and give you a hug.
  5. I bet it is the busting, and your pain free times should get longer and longer. I was at the end of my rope too when I found this board. I was at the point of "If this doesn't work I'm putting myself in the mental hospital so I don't kill myself." Because I have people relying on me. I've also seen up close and personal what suicide does to a person's family... And I cannot ever do that to mine. Not in a sane mindset anyways but during a K-10 it becomes a compulsion. Anything to stop the pain. Anything. That's my fall back plan. I don't know if it would work... but I feel like I owe it to the people who love me and who I love to try whatever I can to survive. I've almost been busting for a year, and it wasn't until last June or July I finally learned that Low Cycle REALLY existed. (I thought it was some kind of myth... until it happened to me.) But first, I had small breakthroughs like you. At first I could just feel something happening to my trigeminal nerves. Things got better slowly but surely. If it can happen for me, it can happen for you. The way I feel is... if you're coping, you don't have to know how. If it's working, just be thankful it is. Maybe when whoever created us was giving out coping skills, we were all in the line for "SUPER COPING SKILLZ!" I hate that you don't have people to sit with you there. Physical distance sucks. *hugs* You can, and WILL beat the beast. Mystina
  6. http://www.bricktestament.com/the_law/how_long_to_hang_somebody/dt21_22.html Click through the pictures. The last one amuses me. The Brick Testament is great! http://www.bricktestament.com/the_law/when_to_stone_your_children/dt21_18a.html WHEN TO STONE YOUR CHILDREN TO DEATH.
  7. Honey, my psychiatrist has flat out told me he doesn't know how I cope. My response was "I have no idea how I'm coping either." (And several of my other doctors have commented on the same thing. No one knows how the hell I'm coping.) Y'know what that really means? That they think you're strong. And that they think that they themselves could not handle being in your shoes. I've had people telling me that stuff since I was 12. I've learned to take it as a compliment. If they're saying they're willing to be there, have you tried reaching out, and telling them what you need from them? If they can't give you what you need then.... yeah, it's FACE PUNCHING TIME. Renee, I don't know what all you've tried, but before you go with that option, I'd try everything out there for them. To quote a poem "Do not go gentle into that good night. Rage, rage against the dying of the light." There's got to be something out there that will help you. If your doctor can't help you, you should get another. I know someone mentioned another hospital to you, try anything. Your life is valuable, you are a valuable person, and this world would be a much less lively place without you in it. Mystina
  8. I always think of Stephen King when I see Brylcreem mentioned ANYWHERES....
  9. Way to go Dan! Good ol' promethazine. I didn't recommend it because I didn't know if it hit on any important receptors, but it does work for a lot of nausea. If I can make it til Feb 25th before I have to dose again, for me I'll say the tabs work just as good as the vitamin M does. And that was just half a tab. But I agree, if the shrooms work, and the tabs didn't bust it, screw 'em! Use what works best for you! Mystina
  10. My guess is they focused on the sick part to make sure that people didn't think you were doing it for fun. That you were doing it for a serious reason, and it had non-fun results. It's a damn good thing I don't get nauseated on vitamin M, because once I start puking, I don't stop. I got nicknamed Vomit Girl at the children's hospital 'cause of it... I stopped the seeds cause they kept wanting to come back up. What about some of that Emetrol stuff, Dan? Have you tried that? I don't think it would mess with receptors or anything... Mystina
  11. Nope, I don't take it anymore. When I read it might interfere with busting, I dropped it. Busting has me in low cycle so it's not exactly a problem, and on top of that, my bedtime meds knock me out for a good long while. If I wake up with a hit, it's because something has triggered me. (Someone startling me awake for instance.) Mystina ETA: Before though, when I used it, it worked like a charm. No waking up with night hits. Bedtime meds got increased last year in April. So yeah.
  12. I have no cable so I couldn't watch, but still want to say Thanks to Dan and Leann! Thank y'all so much!
  13. http://www.cracked.com/article_19644_the-5-most-insane-original-uses-famous-products.html HOLY FECK #5. OMG. OMG. OMG. I laughed so hard. I shared it with my Mom and Aunt and they were horrified too. I was like "It worked like that because it was fecking melting your..." (Read it to find out what it would be MELTING...) lmao
  14. Ting, honey, I am so grateful we have you. I'm so glad you survived this and came and searched. I had a weird series of events leading up to my diagnosis, but I was diagnosed immediately. My life was hell, up until I discovered ClusterBusters. I think that there's no telling how many lives Busting has saved.
  15. Are we SURE he was only doing coke? Cause, damn...
  16. I again suggest you wait until your indo test is done before busting. Don't they say it takes like a week to tell if the indomethacin is doing anything? On top of that, if it's not working, why waste Vitamin M you may need for a real flare up? One other thing, you might be one of those who needs to wait a longer time to see results. i.e. Two weeks or so. And lastly... If you and your doctor don't know for SURE that it's your cluster headaches causing this current shadow like headache, then throwing the seeds and mushrooms at it may not be a wise choice. There are a lot of things that cause a constant headache... And I can say from experience, mushrooms, and rc seeds, do not fix them all, or effect them all. I've got a type that mushrooms, lsd, and RC seeds will not touch. However, when it is acting up, my CH is much worse, and way easier to trigger. If the indomethacin, and the mushrooms / seeds don't work, I'd have him check for every other possibility out there. CT scans, MRI/MRA, spinal taps, all of that. Because you deserve to live in comfort, without a constant headache, and if dosing with this stuff isn't the answer, then I'm of the belief there is something else that IS. There's got to be a way to figure out what's going on and get you some relief! I'm positive there's hope, no matter how hopeless it seems for you hon. Mystina
  17. Well, with the neurontin, it's known to work on neuropathic pain. Lyrica is just a modified version of it... Tegretol also is supposed to help neuralgia. Depakote is used for migraines, along with some mental disorders, along with working on GABA. From my own past experience, they like using anti-convulsants on migraines. Shit, a lot of what is used on us is what's used on people with migraines. Or neuralgia. Etc etc. So... The list kinda goes like this. Steroids? Indomethacin? Other Nsaids? Migraine meds? Calcium Channel Blockers? Anti-convulsants? Anti-Neuralgia meds? I might be forgetting one or two classes of drugs used on us. (And no, seriously, I've been asked about ALL OF THESE by neurologists. It was by my suggestion we tried Baclofen and Zanaflex when everything else fucked me up or failed.) I dunno man. Mystina
  18. My only suggestion is maybe don't bust while on the indomethacin so you'll see which is actually working. If the chronic shadow feeling you've been having eases, you'll know it was the indomethacin. If it continues, you won't be sitting there wondering "Was it the Indo or the busting?" Good luck! Mystina
  19. I think the general consensus is NSAIDS are safe to take while busting. I'm guessing your doctor is giving you the Indo test? I was wondering if you'd had that.
  20. A ct scan would show if anything has changed in your brain. Same as an MRI, it'll show if there's something going on with your head that is different than just the CH. You might want to get the doc to go ahead and re-run them, make sure nothing has changed over the past 2 years.
  21. Been praying for y'all all day! Hoping for good news soon!
  22. Here's the latest fun I've had, that I've been laughing at. Be forwarned, I was kinda in a cranky mood when all of this happened, because all sorts of fecked up shit was going on, but for some reason, this one little thing just made me RAAAAAGE. I've laughed pretty hard about my overreaction to it, so did my family, and everyone else I've told. So, I thought my shunt tubing popped out of place. The local ER here did too, misreading the CT scan. (It's simply recoiled into my belly. It's still working just fine.) I was transported to Galveston via ambulance. I get there. I'm feeling hot thanks to the pain meds, and they then they decide to put on the most fecking annoying thing I can think of. These. They're to prevent Deep Vein Thrombosis. Um...I can get up and walk around, it just hurts at this point. I'm not one to lay in bed much in the hospital. If I'm on pain meds, I will get up and move around. There's no reason to try to put these godforsaken things on me. Basically what they do is... I'm just gonna copy it from wikipedia. "In use, an inflatable jacket (sleeve, glove or boot) encloses the limb requiring treatment, and pressure lines are connected between the jacket and the air pump. When activated, the pump fills the air chambers of the jacket in order to pressurize the tissues in the limb, thereby forcing fluids, such as blood and lymph, out of the pressurized area. A short time later, the pressure is reduced, allowing increased blood flow back into the limb." So basically it squeezes my legs a little, then deflates. And it kinda itches. The nurse who puts them on me is like "Is like massage, yes?" "No. It's itchy and irritating." I told a nurse "I will get up, walk around, do a freaking JIG if you want me to, if I can get rid of these things. They itch, and I want to set whoever made them on FIRE." She was like "Sorry hon, this is the neurology floor, and the doctor who runs it has a cow if he sees patients without these on, and then we nurses catch hell. Talk to him when he does his rounds." So, I do, and his response is "Oh, you just need some Ted's Hose on under those. That'll make it better." I just told you I'd get up...walk around.... move...sit in chairs... And your response is... LET'S ADD SOME COMPRESSION HOSE TO THIS, WHEN YOU'VE ALREADY GOT THESE FREAKING CREEPY THINGS ON IT? AUUUUUUUUUUGH. I decided at that point I wanted to hunt down whoever came up with them, attach these to EVERY LAST LIMB and body part of theirs, then shove one set on fire down their throat. I told my Mom this as soon as she got up to the hospital there and she cracked up. So did my Aunt. Now see, they put these on me when I have had to have shunt surgery, and I don't mind them then. It was just having them on RIGHT THEN for a few hours that focused my rage. Then I raged once I found out my family had wasted like $100 coming all the way to Galveston because I DIDN'T need shunt surgery, then I got my head out of my ass and was thankful I didn't have to be cut open. The horrific adventures of Mysti continue!
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