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Everything posted by Pixie-elf

  1. Welcome! We're glad to have you, but hate that you have to be here. Read all the Clusterbuster files like Ron said, they'll make things a lot easier. Prednisone is NASTY, with busting, you should be able to avoid it.
  2. Congrats Renee! I hope everything goes well for you, honey!
  3. Can you drink energy drinks? If so, sometimes they help abort hits. Good luck busting!
  4. First, the oxygen concentrator isn't what you need. You need pure 100% oxygen. Second... Read the ClusterBusters files. Trying to bust over and over in just 3 days time isn't really enough. You need to wait 5 days between doses, or you're just wasting good medicine. Third: For work, get some energy drinks. They'll help a hell of a lot. And get some little tanks to take to work with you. Good luck!
  5. Well, we kinda need to know exactly which antidepressant it is to be able to help. Let us know. *hugs* Welcome to the board, so sad you're stuck here. I'm a chronic, on Lexapro for my depression, but busting keeps me in low cycle. I don't think the Lexapro is busting me but I may not know for a long time..Just depends on the person I think. I believe there's hope still even if you ARE on anti-depressants. Mystina
  6. Pixie-elf


    Now I know why my whole family is so into reading. And I just thought it was the stories taking us into other worlds.
  7. Pixie-elf


    If you've got a Harbor Freight near you, they've got a nice little electronic one too. http://www.harborfreight.com/1000-gram-digital-scale-97920.html
  8. Yeah, I tend to get 'em, but I've also been diagnosed with Trigeminal Neuralgia on top of CH. Skullcap seems to help with all of that, some people just use it when dosing, but I use it daily as I've found it reduces the severity of my overall hits. (I'm chronic, but I stay in low cycle thanks to busting.)
  9. You should look into getting some Oxygen, on the left side of the page, there's a thing that says "Menu" if you hover your mouse over it and click the page about oxygen it'll tell you all about it. It might help you out a hell of a lot more than the 'trex. So sorry that you've got CH, but glad that you found us! Mystina
  10. When we have the money I might have to get some of this and try it... Looks like it helps interstitial cystitis too! Thanks for telling me about it! ANYTHING that helps with the IC is good news for me. At least when I got hit on both sides I was already in the ER, with an IV. They shot me up with Dilaudid, and it knocked it down. It was SUCH a huge relief seeing my doctor relieved. When your neurosurgeon is worried / concerned, you know something is bad. When he's relieved and brings up "NOW you can go on your trip that you were planning!" you know things have turned around completely!
  11. Mine started suddenly, my first REAL hit May 28th, 2008. I thought I was having a stroke or an aneurysm. With my other neurological problems, I went to the ER, because I was sure I was going to die. They diagnosed me then and there. However.... a few days before I'd seen an ENT. I'd been having what we thought were sinus infections off and on for the past 6 months before that. Low level hits, really. I'd even been diagnosed with a severe sinus infection 2 weeks before. When I saw him I was having what I now know to be a shadow. He said my sinuses were the clearest ones he'd ever seen, and he believed I was having cluster headaches. I looked it up and was like "Thank GOD that's not me. He's got to be wrong. Maybe it's my TMJ acting up again."
  12. Ting, you are an amazing, strong, brave person. It's hard leaving someone you love, but you and your little girl deserve THE BEST. This is a brand new start for both of you, and you have amazing things headed your way. I can tell! Love you! Mystina
  13. Today I had my 2 week post-op checkup from the last shunt revision. My neurosurgeon walked into the room and asked me how things were, and I told him I was healing up SO much better this time, how I'd been doing, etc. He stopped and just looked at me for a minute and said "Wow. The difference is like night and day." and smiled real big! "This is exactly how I like to see you." So the shunt's working right, I've had some visual changes that we're going to have to look into... But we found out that there's a good chance those are just due to the fact that my optic nerves don't have spinal fluid constantly attempting to crush them anymore. My nearsightedness got worse after the surgery, and generally with PTC/IIH any visual changes for the worse are a sign you could be going blind. So I spent the past week and a half kind of scared shitless. I'm so relieved. Now I do have to go see Opthamology and get a new visual field test done to make sure my blind spots haven't grown. But that's okay. Now, here's the best news: He told me I get to go on my trip to Chicago in August! Kage is paying for all of it, and we're going to be attending one of his cousin's weddings. We're thinking we should attend one wedding each August from now on. Gonna have to bust later this month, right now I've got a UTI. Went to the ER yesterday because of the pain, wound up getting hit on both sides at ONCE. Caused some pretty bad shunt pain, too. On the bright side, I'm so thankful I'm not the lady who a doctor LOUDLY was asking "Did you do any cocaine? Because that could be why your blood pressure is high." "Oh no." "Are you sure?" "Yes, I didn't do any." "Because if you did just a little, TINY bit, it could be what's making it so high." We overhear the strangest shit in the ER, I swear. I love you guys. <3 Mystina
  14. BB, those eyes say "I see what you did there. You tripped your balls off."
  15. blueballs am cool thank you.but i was proper spannered on them i realy cant see point in buying HD tvs because i ad 10 HBWR seeds last and i was see in hd 3d the lot ..lol dont tell no one but av got a dog and i think he knows..lol I bet the dog noticed. Some dogs can actually smell chemical changes in the brain. (At least that's how they told me my dog was able to sense my seizures when I was young. My cat could do it too.) Don't worry, they won't tell anyone. Mine haven't.
  16. I had a whole 'nother post written out but I decided to change it. Yeah, fecked up shit. I suggest therapy. Might help with your problems, relationship wise and otherwise.
  17. Sorry I'm late, happy Birthday Bob!!
  18. LMAO. I love you both. <3
  19. Hey guys. Thanks for all the well wishes. I believe they worked. Basically, the surgery was already set for Tuesday,the First. But when I went in to see my doctor last Thursday, I passed out for a few seconds in the elevator. I didn't hit the floor, but I did hit the bar/handrail on the back of the elevator. Mom grabbed me, and I'd come to already. So doc explained that basically, where the tubing was going into the stomach it was completely blocked. Either I scarred down on the tubing too heavily, or the general surgeon closed up the place where the tubing was too tight. I'm kinda blaming the general surgeon cause he was the last one to touch my shunt and he wasn't my neurosurgeon! LOL. I had the choice to go home, or stay there if we didn't feel safe with me going home. We chose to go to the hospital. My Aunt drove my Mom and I there. They started me up on painkillers and morphine while they ran tests. I felt pretty Godawful, then every doctor who came in was like "TUESDAY'S OUR DAY!" "Tuesday's the BIG DAY" Mom and I got to talking about it, and she said I should act confused the next time someone said it. Her:"Is that the big day Santy clause comes into town?" Me: "Maybe someone is getting married!" Her:"*Gasp* Is there something you're not telling me?" Me: "Oh yeah. My shunt and I are renewing our vows tomorrow." Her:""Please get it right this time, you two do that way too often." Tuesday rolled around, got the surgery. Something they gave me caused a HORRIBLE cluster headache on waking. So I was sobbing. The nurse who was stuck taking care of me at the time (the one assigned to me went to lunch so she had to oversee me in recovery.) told me I needed to stop crying or the pain meds couldn't work. Well, this pissed me off. Then when I asked for my Mom she said "Yes, but you need to stop crying, it'll scare her to see you like this." I went off on her. "My Mom has seen me have cluster headaches EVERY DAY. This wouldn't bother OR SCARE HER." We wound up reporting her because you can't say shit like that to patients and get away with it! I was okay for the first few hours after surgery, but then the anesthesia wore off and I was back in pain. The day after they made me walk a ways and that hurt so bad my nurse had to get them to give me an extra dose of morphine. Then yesterday my pain was under control. We're positive that this time the shunt is working, because I felt completely different head wise after the surgery. Everyone could tell a major difference in me! I love y'all! <3 Missed y'all also. Mystina
  20. Jeebs, Maybe! lmao. Honestly, I'm kind of relieved. If it wasn't failed, I'd be really worried that something else bad was wrong. The symptoms mimic a brain tumor, so, it could be all sorts of nasty things. Which hearing totally crazy sounds can be a part of it. I hope the next time I hear a dinner party going on I'm actually AT a dinner party. XD
  21. Well, my words, I am eating them sort of. I just got called by day surgery. They have me set for LP shunt placement on the first. I was like "I already HAVE an LP shunt." "Well, it says here LP shunt failure." So I'm kind of relieved, now that I know, but the other half of me is sitting here going "HOLY FECKING FECK FECK FECKERS!!!" Along with a lot of other cuss words. (Also totally explains why last night I was hearing a dinner party over on one side of my ear when my room was completely silent. lmao.)
  22. Okay so I seem to be recovering from the isotopes finally. Still pretty uncomfy but my belly doesn't feel like it has 5000 microscopic daggers in it anymore. I called for my results and found out that no, the nurses could not explain them to me, and I have to go in Thursday to have doc explain it. Not really all that surprised by that since the damn test took way longer than it should have. I'm thinking if it is bad, it doesn't require immediate hospitalization since I'm not going to his hospital office. I might be eating my words on that later though, knowing my luck.
  23. If I'm entertaining, it's because I've got to find something to do with my time. That and I'm the kind of crazy that's just plain fun. Or so I've been told. Still feeling icky today. Blargh.
  24. Damnit you guys, now I want some fried food. I blame y'all.
  25. Actually I'll let someone else weigh in on that one. I'm not quite sure what constitutes a 'good starting point' at this time. I just know the seeds usually sedate you, rather than cause anxiety.
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