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Everything posted by Pixie-elf

  1. Do you have Oxygen, and, do you know about energy drinks? A lot of people who have clusters, and maintain their jobs use both, to treat and abort the headaches. I don't have much 'job' experience, except for watching my nephews every weekday for 8 months straight. Which, was one hell of a job even with backup. I kept energy drinks on hand constantly. It helped a lot. Hope things get better for you soon! Mystina
  2. I'm so glad something is helping you, Dan! <3 Does on the conscious sedation does he give you Versed for it? I know it makes most people happy. It turns me into a raging crazy hulk.
  3. I am so sorry for your loss. I'm thinking of you and your Mom, and praying for both of you. *hugs* Mystina
  4. Pixie-elf


    Jeeez!!!!!!!!! Some people have NO COMMON SENSE. > > Glad to hear from you! I have been wondering how you were getting along and what you had found out. Keep us posted and keep that smile on your face, ok? All the Best Whooli. I would blow off the diet too. ;D This reminds me of how when a lady is pregnant, some women will tell them THEIR horror stories about birth. Then at the end add "But I'm sure that won't happen to you!" after terrorizing the first time mom's. Pretty sure this happened to my best friend a LOT. I understand that people want to share their experiences with some conditions but... I try to be gentle with people who might have something GODAWFUL. LET'S NOT TERRORIZE THE SHIT OUT OF THEM. D: *hugs for Whooli*
  5. http://www.needymeds.org/index.htm Came across this website and figured I should share. I was hunting for some low income clinics for a friend, and found a lot more on this site. I'm pretty sure I ordered the prescription card but wound up not needing it. It's got patient assistance programs, along with lots of other stuff. Hope it helps someone! Mystina
  6. k-bo, I am so sorry you're going through that on TOP of your cycle starting up. *hugs* I'm so sorry, I misread your post thinking you meant new and uncomfortable stuff going on with your head! It isn't whining to share how you're feeling with us. Are you sure that you're staying on the O2 long enough after you get on it? That could be the other problem. Don't feel bad about not getting on here when you're better. Most people once they feel good, don't want to think about something that traumatizes them. It's understandable. I'm sorry you're having such a rough time, I hope it gets better! Mystina
  7. Have you tried Energy drinks? Specifically you want something with Taurine and Caffeine in it. And what's your 02 setup? Depending on what it is, that could be your problem. Needs to be 100% pure oxygen, and some people need flows of 25LPM or higher with a non-rebreather mask. (Someone will come along with the link to the one on the clusterheadaches website I'm sure.) What kind of new / uncomfortable stuff do you mean? Sorry that you're back in cycle, but there is hope! You can bust it away! Mystina
  8. Congratulations Brew! So glad to hear that!
  9. Grrr, I was too. >< Bastards! I say we butt bong 'em. http://video.google.com/videoplay?docid=-566701851041844960 I don't know about y'all but CHILDREN I know aren't planning on doing this shit. (And if they are, I will tear their asses up.) Most kids I know would be pleased just getting to DRINK some beer.
  10. Guys, the "Doctor's" show had one episode on dangers of drinking and stuff... ...and talked about BUTT BONGS. My Mom, Aunt, and I watched horrified and laughed our asses off. I don't know if this is something that REALLY HAPPENS but they showed a HUGE funnel, set in a tube, that apparently teenagers are shoving up their asses to get drunk. I take it all with a grain of salt. Sure, teenagers could be that stupid, but, who the shit does a segment on BUTT BONGS? On the whole stupid BS from doctors... I've had ER's treat me and tell me to go home, turn off the lights, lay in the dark, don't answer the phone, etc. LIKE THAT'S GOING TO HELP ME. Pisses me OFF. Mystina
  11. I find Monster to be super effective. 2000mg of Taurine = WIN. You can find 'em at almost every convenience store around. Doing a quick lookup... The thing that's different between the Prodrin and the Migrin / Midrin, is there's no Dichloralphenazone in it. Might be why you see a difference. Your doc might be able to prescribe that part of the medication separately. You could always ask! Good luck, hope you get some relief! Mystina
  12. Hey guys,   This is mostly for our U.K./German/European forumgoers, but, I figured I'd ask all of y'all anyways!  My neuro (he doesn't know I bust.) has suggested I try a few herbs that're used for herbs that had actions similar to the drugs that actually worked for me. I figure feck it, I'll give it a shot. However, part of his suggestion was that I go for herbs that were specifically made from companies in the U.K., Germany, or Europe. Because over there, herbs are regulated, just like pharmaceutical drugs. And in the U.S.... well, the FDA could give a flying feck. So, he gave me one brand name, Weber&Weber for Butterbur, and suggested I find some Feverfew from another European brand. Any suggestions? Doing a search for this on google has given me a freaking tension headache because of some of the results I got. No, I don't want some German Slimming Herbal Tea. Or Aphrodisiacs. Thanks but no thanks, Google. D: Any help would be appreciated. I'll report my results here, if any of it works, or not. My Mom will be trying the Feverfew with me likely. I tried it for Migraines from the time I was 9, but never for CH. Butterbur I tried before I started getting hit, too, I believe. (And with Butterbur, you WANT the Weber&Weber Brand. Other brands might not be safe. I didn't know that at the time and it was not Weber&Weber. D:) Mystina
  13. Get the O2ptimask. It's a MILLION times better than those shitty rebreathers they give you with a tank. You'll be amazed!
  14. I've had 1 ER treat me like shit, and treat me badly, I have a rule. I find out who the patient advocate is, and get them involved. Sometimes they go by a different name, like patient care facilitator. There are others. But they all do the same thing. EVERY patient has a right to call a patient advocate. Headaches tend to be ignored due to the fact it's not life-threatening usually... but I make sure they know I'm SUICIDAL due to the pain. If I'm at the ER, I'm not there for FUN. EMPHASIZE this. Used to I felt ashamed that I became suicidal from the pain. Now? It's a part of my disease! I can't fecking help it. Not my fault. And guess who is at risk for a lawsuit if they send me home and I kill myself? The hospital. So, if a doctor is treating me like shit, I'm in horrible pain, and suicidal... I know there is someone at each and every hospital who knows the rules. Who also knows how much legal shit and bad press the hospital could get into for something like this happening. Yes, they may have 50 other emergencies to take care of. Sure, they may have labelled me as a drug seeker...but is a drug seeker gonna call in a patient advocate? No. Someone who is REALLY SICK and needs help is going to call for a patient advocate. It is YOUR RIGHT to call for one if you have not gotten the proper treatment. If someone handles you badly, or does something that is against your rights, you call them. I have had to have patient advocates step in for me MULTIPLE times when doctors, or staff members have not done what was proper. In March, I had to call for one during my hospital stay. It doesn't matter who treats you badly, if it's a staff member, the hospital is liable. If the hospital is such a bad one that they don't care about your health...well, then I'd report their asses to the medical board. We have rights. Our disease, just because they don't get it, does not mean that they can push us around. ETA: Lemme give y'all an example. What happened in March was for my second surgery, a transportation staff member did something that went against my rights as a human being and patient. The transportation lady brought the bed to transport me down to surgery. She didn't bring the bed in the room as it wouldn't fit, so I had to walk to it. That wasn't the problem. She waits until I'm OUT in the hall, on the bed, to ask me if I removed my jewelry. I say yes. I'd already given it to Mom. Next, she asks me if I've removed my underwear. I inform her I'd already spoken to the OR staff, they said I could wear it during my surgery. She flips the feck out on me. She tells me that I need to have my underwear off before I go to the OR, because "Those are the rules." She tells me to go back into my room and take them off. I have several nurses with me, and my Mom. I inform her at this point, I'm in so much pain, there is NO WAY I can make it back to the room, remove my underwear, and walk back. Could we please go downstairs and I take my underwear off, in the OR holding area. (Because there's PRIVACY there.) She proceeds to flip the feck out on me, and informs me that she WILL NOT take me down to the OR unless I take them off before I go. Because she "Knows what her job is." I wouldn't talk to my DOG the way this woman talked to me. I had a blanket covering me, and my options were, hold up my operation for 20-30 minutes while they found someone else to transport me, or deal with the humiliation of having to remove them out in the hallway. There was no choice. I removed them under the blanket. I asked if they would give me a pair of the mesh ones at the OR, she snapped my head off again telling me NO, they will not, they don't do that. I get down to the OR, the nurse there informs me that yes, I could have worn my panties, and gets me a pair of the surgical ones, while the transportation lady is standing there shaking her head. My Mom witnessed all of this. The day after my surgery she called for the patient advocate. Because I generally let a lot of horrible shit that happens slide, I wasn't going to ask for one. But what if this woman did this to someone who COULDN'T fight back? What if she traumatized someone who might not ever be willing to go to a hospital again because she treated them like dog shit? I found out just how big of a deal the way she treated me was. The patient advocate was practically seeing red because of how badly this woman had treated me. In fact, every single nurse there was. This woman did all of this against the rules of the hospital. I know this because the head nurse for my floor called, and apologized, and asked if I was willing to speak with the head of surgery. He called me, and he also apologized, and informed me that the whole department had to go through training again to make sure NO ONE would do this. This lady no longer has a job because she violated my rights thoroughly, and did something that was against hospital policy. The hospitals have rules they gotta follow. So do doctors. You have a right to your dignity. You have a right to be treated fairly. Don't let anyone tell you otherwise.
  15. Steroids can kill you if you don't taper off, so like everyone said...do the taper. You do not want to go into a steroid crisis. I've been in one, and it's not pleasant. (I wound up with bacterial pneumonia thanks to it.) I'm allergic to all of the damned ones, so I avoid 'em at all costs. I can't say how it impacts a cycle because the only time I had it, was an injection of Triamcinolone in my occipital nerve, and it made my hits about 10x worse for 6 weeks, until the stuff wore off. (It was the only one we knew I hadn't had a reaction to...and after that, I decided NO MORE EVER. FECK THAT.)
  16. Sounded like a migraine to me. I've read the series and love it. Stephen King in some books has described some pretty severe headaches, I honestly wonder if he hasn't suffered from clusters or migraines himself.
  17. It's not the hits for me that tell the weather, it's my shunt. Though I'm more likely to get hit pretty bad during a storm. I've heard tho ANY kind of implanted device, you can feel it when it's going to rain. Sometimes I'll get the pain a few days ahead of time. I don't think it's crazy at all that our body can be sensitive to things going on outside of it. With my shunt it makes my spine hurt, and my legs. I understand my body thinks it's telling me to get the feck away from the storm, but I can't do that if it fecks my legs up. From before I was 2, I wanted to grow up to be a meteorologist. (No joke, one of my favorite things was watching the weather channel.) now I can damn sure tell when bad weather is coming! Well FECK. XD
  18. Okay, I'm getting that you cured your clusters with mushrooms... ...But how exactly is the illuminati involved? Did they give us the cluster headaches? Cause if they did, them motherfecker's are gonna be fecked up by me. Also return the cat. I agree that someone's child is crying over it. And that's probably EXACTLY what the illuminati want. I mean, any evil organization is ALL FOR making little kids cry.
  19. Pixie-elf


    So glad things are working out for you! *hugs* I like what your neuro had to say.
  20. How many rc seeds did you try? And did you do the sink/float test? *hugs* Mystina
  21. WTF? I'd make them do a few more scans, since you HAVEN'T had the surgery. Or take the films to another doctor for a second opinion. And another WTF on them refusing to prescribe anti-diarrhea medication. You could end up in the hospital from dehydration! UUUUUUUUUUUUUUUUUURGH. Imma punch your doctors! *hugs* Feel better! Mystina
  22. I'm with Jeebs, you'll probably get it under control by then! IF on the off chance you don't... I wound up with a lot of tips on going on an airplane, like you could take a capsule of 0.5g or 2 with you and take them before you board the plane, and that'll help. (At least some people on here told me that. ) You can also do energy drinks, and you could get an energy shot for the plane ride that'd go under the 3.3oz limit. You're gonna be just fine Clusterfeck!
  23. I've kept journal's when my doctors have asked for them...but otherwise I don't bother. It helps other people, I'm sure. Especially if you don't know what your triggers are, or are trying to narrow down when things are going on, when high cycle happens, etc. Mainly because I know how I'm doing, how I've been doing, and if I'm doing well or not compared to 6 months ago. I went from doing horrible all the time, to doing better with each dosage.
  24. The reason they want to do a Brain scan is because there are a lot of diseases that can mimic CH, but are not CH. While CH might kill you via suicide, there are other conditions that can kill you in MUCH nastier ways. Or just screw you over horribly or damage you irreversibly. So there are reasons for it. If you've never had it done, I'd get it done at least once to rule everything else out. Mystina
  25. Unless you're diving, in a hyperbaric chamber, or a premature baby, you should NOT be having oxygen toxicity on a concentrator. (Or at ALL...) I'd get to an opthamologist ASAP because going partially blind can be a sign of several neurological conditions that can cause actual blindness. Or can kill you. Please, talk to a doctor. Get an exam. If they say oxygen toxicity, okay then. But seriously, don't risk your vision or LIFE. Mystina
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