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Everything posted by Pixie-elf

  1. Hoping that all of you have a better year than last, less clusters than last year, and much more pain free time for 2012! I'm gonna be busting in a day or two. My first bust of the new year! Whee. Gotta see my allergist first though tomorrow. I love y'all!~ Mystina
  2. I'm allergic to Benadryl. B12 is a major hit trigger for me. I also have allergic reactions to iron supplements. Oh, and Steroids. Those will close my throat up AND trigger a hit. Doctors try to tell me "You can't be allergic to them" and I'm like TRY giving them to me. You will be pumping me full of epinephrine and narcotics for the next few weeks until that shit gets out of my system! I think I'd go with the busting. I know with me, busting seemed to help regulate some hormones. In September I was put on Spironolactone, and that crap lowered my testosterone and I got hit like crazy. I'm still trying to get it out of my system, but I know that it fecking with my hormones has messed me up. Hoping that when I bust again soon it'll even it out more... Happy new year! Hope things get better for you with busting. <3
  3. When I stopped my Nuvaring (Birth control but also to keep me from bleeding all the damned time) my migraines went on a freaking rampage. I had a month long one. It cleared up when I went back on it. On top of that, no two people have the same body types. Or the same results. I'd punch any doctor who told me something works on 100% of people because I'd always be the one who it DIDN'T work on.
  4. Magnesium can also cause loose stools... So maybe the two together are a little too much? Actually, I have had insomnia since I was a small child. Which I think is a sign my hypothalamus was fucked up way back then. Since it's supposed to control hunger/thirst/heating/cooling/sleep etc... I have to take sleeping pills to sleep, otherwise I've gone for over 2 weeks without sleep until my family begged the doctors to knock me the feck out. (I get REALLY hyper after about 48 hours.) I also sometimes run a low grade fever during hits...that end after the hit does, so that also makes me think the hypothalamus is involved too. One other thing... if someone startles me awake, it's a guaranteed hit. My family tries not to mess with me when I'm asleep, because if they do there's a good chance it'll trigger me. And when it does, it's bad.
  5. ROTFL Renee at the dog comment. You are a damn strong woman to have gone through that transition! I think I'd go with my gut and have them check the testosterone levels either way. Even women need testosterone. There's a thread on CH.com talking about women and men who have had it correct their CH. I don't know how much it would cause problems with the estrogen... But my main thought is : If you think it might have to do with your clusters, get it checked! Even if your doctor doesn't think it'll work, you should go with your gut! Mystina
  6. It was Pure GABA, at Bedtime, 750mg. Sometimes I'd take 2 at a time. Pretty sure the only other supplement I was taking at the time was Skullcap, this was about 2 years ago, so I know for sure I was on the Baclofen, and Diamox, at the very least. Dunno how much help that was. lol Mystina
  7. I think this is a valid theory. I tried the GABA pills but they didn't work on me... however, Baclofen is a derivative of GABA and that's a preventative for me. One of the few that actually worked. Then there's the fact some people are helped by Neurontin and Lyrica, and Neurontin at the very least is a GABA analogue. So yeah. Good going Lt! Mystina
  8. I agree, it's not a headache, it's an attack. I wish we could get it changed in the medical literature. Y'know what my pet peeve is? When the feckers don't know what the hell it is and pry my eye open. DO YOU THINK I'M HOLDING MY EYE CLOSED FOR FUN? NO. WHY THE HELL DO THEY ALWAYS HAVE TO TRY THAT? I mean, you see someone with a gaping wound in their leg, the first thing you do isn't JAM A FINGER IN. RAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGHHHHH. Just had to get that out. My Mom and I always laugh once it's COMPLETELY over, because seriously, what the feck is wrong with them? LEAVE OUR CLUSTER EYE'S ALONE. </leavebritneyalonevoice>
  9. Hell, I worry about Big Pharma because I suspect they make a killing off of us CHers. I hope what they'll think is that they can just blow us, and BOL off / ignore it as long as they look at how many people have migraines. They'll say to themselves "We still have our regular income. No worries there." Sure, it might be selfish, but it's also for the greater good.
  10. Ack, ear infections suck, Brew. I have fluid behind both of my ears but I haven't got an infection, thankfully. Hope you feel better soon! Found out what it is. At least according to wikipedia. It's a potentiator. http://en.wikipedia.org/wiki/Ergotism So basically it'd make the effects stronger.
  11. I might have found something that may or may not need to be added to the drugs that possibly interfere with mushrooms, etc. Azithromycin. It's an antibiotic. According to drugs.com it might interact with Ergots / things such as Sansert, so I'm wondering if it'd interfere with mushrooms/LSD/LSA, too? http://www.drugs.com/azithromycin.html I was put on it because the first antibiotic I was on wasn't getting rid of the sinus infection. I'm kind of out of it thanks to the cough syrup I'm on. I figured I'd see if someone could find any info on this. This stuff is supposed to stay in your system for a while, so... I figured better safe than sorry. On the upside, I don't think I'm going to need to dose while I'm on this stuff, but if I do I'll be reporting what happens. Mystina
  12. I completely missed reading the "temporary" part and was like "Wait, what happened to the house?" lol. So glad the move is finished! Hope y'all are in the real house soon! Mystina
  13. Pixie-elf


    My suggestion? If you've cooked food for the whole family, sit down and try it. You might find that you enjoy it more than you think you do. I don't eat much myself, but I try to keep stuff around that doesn't require much fixing - apple slices + caramel dip. Bananas. Oranges. Things you can just munch on. Crackers + cheese. If nothing else, those things will put food on my stomach. Honestly? You should really try the RC seeds. Nothing like pain free time, or less pain time, to bring back your appetite. Mystina
  14. I laughed internally, at least. I'm so thankful my family understands miming. Because if they didn't, I'd be royally fecked.
  15. You know what doesn't work great with dogs? Miming. FML!! First of all, I've lost my voice entirely... My dogs needed to go out. This was a problem. The cocker spaniel likes for me to tell her to go to the door. So I mime go to the door, pointing, gesturing, and finally she gets it. I let her out, she comes back in... I try getting my boxer-retriever Bella, to go outside. She's kinda afflicted. I gesture to come here, slap my leg, y'know, stuff you do when you're trying to get a dog to come... She stares at me and wags her tail. I'm miming GET OVER HERE G.D. IT. COME TO ME. NOPE. Finally my Aunt notices and tells her to go to the door if she wants out. Bella understands this and comes. I let her out, let her back in, and flip both dogs off for being difficult asses. They might not understand it, but everybody else sure does!! If I COULD laugh at this, I totally would. XD
  16. Have you tried Melatonin at Bedtime? It's what a lot of us use to help us get through the night hits. Have you tried the RC seeds, or anything else? Hope you feel better. Mystina
  17. LOL now that's keeping your beastie disciplined. A hit peaking at 9 - there's a horror show that'll screw with your day! > Here's hoping it was strictly a one time rogue visit from old feckface.  :-/ Yeah, I'm pretty sure it was just a rogue hit due to the infection / pressure on the trigeminal nerve. Hell, this past January I had strep, and it triggered me pretty bad. It didn't spike up to anywhere near this high though. My rule is once it starts getting to the point where I'm suicidal it's time to go to the ER. I went in at an 8, and I guess the beast leveled up while I was in the damned waiting room. Bastard. I'm just thankful that they do have drugs that do help me if I need it. On another note, I've lost my voice pretty much, so about the only thing I can do is whisper. It's kinda funny.
  18. I was kinda minding my own business Saturday when I got a virus/sore throat. I started taking Bee Propolis, and as a rule, if it's not better in 2 days, I go to minor care. The doc does a swab for strep, no strep. So he suggests it's just a upper respiratory virus, I shouldn't take antibiotics for just a virus, but he'll write them just in case. Instead, Mucinex and Ibuprofen for a few days should make it go away. I wasn't quite convinced... I had him give me a script of antibiotics just in case things got worse real fast and I needed them to protect my shunt. I also noticed my hits had been going from 1's and 2's up to 4's or so since this crap had started. I woke up today with a massive headache, and with a nasty hit. I had taken decongestants to help me sleep, as they're not a trigger... and they'd worn off after like 6 hours. I was miserable. I told my Mom and Aunt I needed to go to the ER. I get there, have to wait around an hour while they do a CT scan on me before giving me anything, the hit peaks at a 9. (Mom got pretty scared she said) They finally call me back to tell me that they were giving me some morphine, and that I had a bad sinus infection. I got my shot, hit got better, then we went and got my Clindamycin. Feeling a lot better. Thanks CH, for letting me know something was BAD wrong. You did something right for once. Good beastie. Now don't think that means you can go back into high cycle, feckface. Mystina ETA: And as someone who has suffered from tons of sinus infections, I will say this one was weird. The pain I was feeling did not feel like a sinus infection at all. Had the CH not been so bad, I might have just ignored it as pain from the 'virus'.
  19. BOL is synthesized so that it doesn't cause hallucinations. But from what I've saw others say, the company is not trying to get them to approve it for migraines. They're strictly trying to get it approved for CH. Mystina
  20. If Red Bull is all y'all have for energy drinks you could always try it. The caffeine and taurine are supposed to help immensely. I tried both in pill form and it just didn't work as well as the energy drinks did.
  21. Sounds like the head-banging a lot of us do. Except with that, for me, it's a compulsion. The pain gets too severe and I can't control myself and head-banging starts. Haven't done it in a good long while though. I think a doctor over on CH.com explained it as us trying to interrupt the pain signal. I'm pretty sure my body is too fecked up to release endorphin's properly, and I'd be way more likely to bleed all the feck over if I tried using a needle. Do they sell Monster, or Jolt in the UK? If so, get you a can of that. You could try red bull as an energy drink but I think the stuff tastes like donkey piss. (Or what I imagine donkey piss would taste like...) I'm pretty sure oxygen would help even if your hits are only 15 minutes long sometimes. In most cases it does. Mystina
  22. Thank you so much, Bob and Kaboom! Thank y'all for all that you've done, thank you, thank you, thank you. <3
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