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Everything posted by Pixie-elf

  1. Renee, I am SO HAPPY for you! This is wonderful news! I've been hoping and praying you'd get to have your daughter back in your life too. This is so fantastic! I'm glad things are FINALLY looking up for you! Mystina
  2. I'm kinda worried. D: Does anyone have contact with him so we can know he's alright? I lost his phone number otherwise I'd be checkin'! ETA: You can definitely lure me with candy. I will climb into the candy van. Or you can lure me with Lush bath products. Those will also draw me near.
  3. Wish I could come! I'm part Choctaw thanks to my Great Grandparents. Say hi to my people for me. Hope y'all have a blast!
  4. 1g probably isn't going to do a whole hell of a lot. 2.5g-3g is what I've heard you should start at. I don't think I've ever experienced a slapback / rebound hit, really. o_o Maybe I'm just lucky.
  5. Crystal, no offense was taken, or meant. I'm sorry if you thought I was offended! I'm not communicating very well lately. I meant that this condition is still very serious, even though it can't kill us directly. We're all fighters, and every day we stay alive having this disease is another day we've won the battle. Honestly, if I were you, I would go ahead and order some RC seeds. If your cycle does go ahead and end, you'll have them on hand for next time... If I had known about RC seeds when my cycle first started, and knew how well they'd work... I would have tried them first before all of the other meds. I'm glad the ER helped you. I hope that the beast is dormant so that you can get some much needed rest. Mystina
  6. I think I've seen mention of it someplace on this board. For some reason my brain is connecting Jeebs with the memory somehow. (Maybe he'll know.) Please, please tell us all about it, Cat! Mystina
  7. Actually, I'd say if smoking is making her CH's worse, it's probably a good idea to try to stop at least during an episode. I'd say the same for anything that makes the headaches worse, though. Losing weight didn't help my CH either. Honestly, I think they just suggest it in hopes that if you get more healthy over-all the CH will go away. Which is goofy. And this disease has killed many sufferers. Not by directly killing them, but by causing them to commit suicide. Hell, if I hadn't known about ClusterBusters, and it hadn't worked, I'd either be in the mental hospital... Or dead right now. It destroys so many lives. I know for a fact busting has saved my life, and given me quality of life back. Having a name to go with the condition you have always makes it easier to deal with I find. Once you have a name, you know what to call it. It gives you some power over it.
  8. So glad to hear that!
  9. I've suffered from complicated migraines since I was 9 years old. They started suddenly, I'd never had headaches before then. Once my period began, I had a migraine for EVERY single day of it. Birth control helped immensely, but they were still horrible. Sometimes I'd have 3 month long periods thanks to a uterine fibroid. After I busted the first time with RC seeds, the migraines stopped. I haven't had one since. That's over 1 year migraine free. I highly suggest trying the RC seeds for it. My life has been so much easier since it.
  10. Pixie-elf


    If I had the power to set things on fire with my mind, whoever put this website up would be nice and crispy fried right now. RAGE.
  11. I hope things continue to get better for you and it turns out you are at the end of your cycle! That's awesome that the nurse practitioner was able to diagnose you. A LOT of us were diagnosed with sinus problems, or, misdiagnosed. Or have sinus problems on top of CH. Also, I believe it's normal to be afraid it's a brain tumor or something horrible going on and then find out it's CH... The first time I had one, I thought I was having a stroke, or an aneurysm. Either way, having the O2 on hand will give you peace of mind. You'll have something to combat the CH's the next cycle, and won't have to wait around for medication or to get seeds, etc. Good luck! Mystina
  12. Actually you can try to bust while on pain meds if needed. I haven't had 'em interfere / change it, but that's just me... If things are really bad, since you kinda need to lay there and recover, I'd attempt it. Hope you recover quickly! Feel better!
  13. I've dyed my hair purple several times in the past. This tempts me to again.
  14. You should wait at least 5 days before trying the shrooms. Otherwise you'd take the shrooms and they'd do nothing.
  15. Welcome back! And yes, he's the man! <3 Hmm I couldn't tell!
  16. My brain is so fecked up right now I read that as "if you're making tea and not beef stew." So I automatically thought: "...I guess the cow poop gives the stew flavor."
  17. I'm so sorry that you're suffering so much! I don't know where you live but that sounds pretty damned scary to me. And yes, you can grow RC seeds yourself. Unless morning glory type plants are outlawed there too. I agree with Bejeebers, depending on your cycle it might only take busting a few times to kill your cycle...then preventative busts later on. You could go someplace it's considered legal for a vacation, dose up there, and see how long it works. If it only works short term you'd know you needed to move. If it works long term, maybe you'd only have to go on 'vacation' once a year or so. Hope things get better for you! Mystina
  18. There's something wrong with your doctors if they think that being underweight is okay. It could be the pain causing it, or an actual medical condition. I would demand they run endocrine tests, or send me to an endocrinologist. I BARELY have an appetite most of the time. I force myself to eat once a day at least, and if I'm not in pain I'll eat much more than while in it. Since the hypothalamus controls hunger, and thirst, I kinda also suspect it's a symptom of our condition, too.
  19. There are people who bust while still on verapamil, and some who have had to stop it to get better results. I think the jury is still out on it, but most people advise that you stop it completely if possible. I think it depends on your body. If you've already stopped the Verap, I'd go ahead and stay off it and bust without it. It sounds t o me like the seeds are already working if you can work through the day some! Congrats! You'll be just fine. What kind of flow are you using for the 02 and do you have a proper mask?
  20. On living in Texas... I've lived here my whole life. It wasn't until I got sick with the IIH that I became heat sensitive. Kinda pisses me off to be honest because I considered myself a sun child. I loved the Summer, and the Winter never bothered me. Now my shunt hates the Winter, and the rest of my body hates the Summer. We keep air conditioning on year round and my whole family knows... I get too hot, I will start puking, and it does not stop easily. Do they REALLY want to risk me projectile vomiting all the feck over? No. Actually, respirator was the wrong word. Brain still has not recovered from surgery, LOL. http://www.grainger.com/Grainger/MedicalDental-3NMK2?cm_mmc=PPC:GooglePLA-_-Safety-_-Respiratory-_-3NMK2&ci_src=17588969&ci_sku=3NMK2&gclid=COa2m6XH9a4CFeRdTAodtE86IA They're hot, and a pain in the ass to breathe through, but I remember as a small child using them sometimes to prevent pollution on the schoolbus from screwing with my asthma. Don't remember if it helped or not.
  21. Honey, if you're not sure about the hysterectomy get second, and third opinions. Especially on the hormones! I'd request to see an endocrinologist to find out WTF your hormones are doing right now with you in cycle! Is the hysterectomy for some other medical reason? I've had them suggest I get one since I was like....14 because my periods were so bad and nothing pisses me off MORE. You DO NOT remove an organ because you can't figure out what the fecking problem is! Mystina
  22. Congrats to you and your beautiful bride! It's so nice to see you so happy!
  23. Chronic is basically considered a year or more without breaks over a certain amount of time. Do not lose hope! Just because you're in month 4, it doesn't mean you're chronic. Imitrex is believed by some to lengthen cycles / change them... Which could just be what happened to you. Or the weird weather we've had this year, or a NUMBER of things. Even if you WERE chronic...there is still hope. We've got plenty of people on these boards who are either managing their chronic condition to where they can have a normal life, or whom have gone back to being episodic! I'm chronic, but the busting methods keeps it all under control so my life is so much better than when I started out. You're gonna be fine! Get that O2, and getcha some RC seeds and you can bust real soon and get these headaches under control. Mystina
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