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Everything posted by Pixie-elf

  1. Just remember.. Not to play games of mashroms on your hand. I hear it's dangerous!
  2. Purple: What you're probably looking for, as far as demystifying the public, is MAPS. http://www.maps.org/ They've been trying for a long time to do it. Busting isn't their only goal there. They've been trying to get it legalized for a long time.
  3. I've found gasoline is a major trigger for me. It triggers me so severely that at gas stations, when our minivan is off, we do NOT roll down the windows. I'm in Southeast Texas. I'm heat sensitive, and the heat is another trigger for my allergies. But I have a choice. Have a horrid fecking hit that'll definitely close my throat up, or be hot for a few minutes and hope the heat doesn't close my throat up.
  4. Congrats Kymera on the wedding! Yeah, DHE is higher than a rat's ass. Have you tried H.E.B pharmacy? If you sign up for their like...$10 drug plan, it's got a lot of good, generic deals. I think that a single vial of D.H.E. was like $45 though... You could call 'em and find out, and get enough to cover you for the wedding. Ergotamine and DHE/DiHydroErgotamine are a bit different. I think Migranal is the nasal spray of D.H.E. Good luck getting it all sorted out. D: Mystina
  5. Detoxing will be so much easier once you get that oxygen. You can do it! Good luck! Mystina
  6. Get the high flow 02! You'll get lots of relief from it and it'll make detoxing great. I have no idea about botox, but flat out, I'd try a lot of other stuff first. I.E. RC seeds. They got rid of my migraines, and helped ease the clusters. Hell, without constant headaches that chronic daily headache o yours might get to feelin' better. Good luck!
  7. Go Renee! Well for myself, the migraines were the first thing to go. Everything else just got better from there! I'm sure it'll continue that way for you hon! Mystina
  8. Well here's the thing. The suicide hotline probably legally can't go around saying try Clusterbusters, as, it's illegal. I'm thinking OUCH because we're not trying just to reach the people who've had CH for 20 years. We're trying to reach EVERYONE suicidal with it, and trust me... I was pretty damned suicidal at the start! Also, how do they know if the person is a schizophrenic, if they actually have cluster headaches, and not an aneurysm, etc? There are lots of things that cause cluster-LIKE headaches and you NEED a diagnosis before we can really suggest busting. There is a LOT to think about before suggesting busting to just any person who logs on. I'm all for advocating our cause, but not at the cost of making us liable for someone's death because they were too gung ho about it to get real treatment. If they're someone who has tried everything, the people over at the regular CH.com board will send 'em over here. And they're involved in OUCH. Pretty sure there are several members over here involved with OUCH. I'm also betting that a LOT of people go un-diagnosed and kill themselves because of that. They don't know what they have, except it's driving them nuts. This might just be a wild guess on my part, but had I not found out what CH was, I wouldn't be here. Just knowing what the hell you're fighting gives you a bit of strength... You know you have something medical, and there are treatments for it. I learned very quickly about busting, but chose to save it. If you're already diagnosed and learn there's a few more options well... that may save your life too. I've also seen plenty of busters, and non-busters suggest people come check out our message board. I think it should be a joint effort, precisely because people from both OUCH and CB could create a post / page about what people need to do when it's been suggested by one of these hotlines to check them out. Already been through a lifetime of treatments, or just tired of it? Proceed to cluster busters. New person, undiagnosed, going through the indo test, or just got your diagnosis? A page outlining all of your options. Including CB. I'm someone who HAS had the radio frequency ablation surgery. Never again. It did horrible shit to me. But I feel like everyone should get to examine all of their options before deciding what path to go down... and that includes Busting.
  9. I think this would be something OUCH should look at doing. We know there are people who kill themselves over this. I think the head of OUCH should see if they could talk to some of the heads/owners of free hotlines. It wouldn't take much for them to get a memo out to the volunteers "If the person wants to commit suicide due to head pain get them in contact with ouch. If that's not an option send them to the ER" etc...
  10. Ron: Thank you for the welcome home! I'm so glad to be back on the board. Kage: No baby, we told you the day of the shunt surgery that Sunday if my tubing moved out of place I'd be having another surgery done. If it was fine, then I'd have gone home. Tara just posted about it because Mom made the mistake of calling her first, so she could get up to the hospital. She said she won't be doing that again! Purple:The reason why you're having a hard time is likely due to the fact there are kidney shunts, heart shunts, etc that all do COMPLETELY different things what a lumbar shunt, or one in your head does. http://en.wikipedia.org/wiki/Lumbar-peritoneal_shunt LP is the type of shunt I have. http://www.sophysa.com/fr/images_db/Figure07c-png24.png is a pretty good picture of what mine looks like. Except I've got a few more things attached to mine. Spiny: Well, I also kinda forgot that Brain Surgery tends to make a person think / say weird things... Last night Kage was telling me over the phone that WE, him and I, needed to go to bed. Somehow my brain decided that the we might not have been me, and a male friend of ours must be staying over. There wasn't ANY logic involved there... Except I was like hmm..I guess when I make it to bed I'd best not call him, because they needed their sleep. I stayed up until like 4am I think. When I told him he was like WTF? Mom was like LOL Brain surgery. I'm starting to suspect some of that wasn't the anesthesia. I was told when I first had my shunt put in it took 6 months for the brain to go back to 100% normal because at first it's response is "OMG, WTF? I can function like a normal brain? Uh...How do I do this exactly?" So it's a bit confused. XD Jeebs: It is, but I kinda signed up for it when I opted for the shunt. Everyone tells you the first surgery is HORRIBLE, the worst surgery they ever had. And me with CH thought "Pfft, they've never had a CH, this'll be EASY." Oh LORD no. Not easy. Not easy at ALLLL. It's every bit as horrible as they warn you it is. The funny thing is though that given the chance to do it again, I'd 'd choose the shunt. It made my life so much better. But my God, I will tell anyone before they choose it to be prepared to go through hell. I also know how lucky I am to have the family I do, and Kage. <3 They're a good part of what makes my life worth living. I'm also lucky to have all of you clusterbusters as a part of my family too.
  11. During my most recent hospital stay I was kinda delirious for about 4-6 hours or more thanks to the anesthesia given during the second surgery I had. My Mom told me a lot of the crazy things I said, and I figured I'd share them. She said first I woke up and declared "I like food!" then fell back asleep... After a few minutes I woke up again and added "I like candies too!" (Candies is a word I stole from Marcos so...) I asked her to play the music on my neck. She had no idea how to do that so she tried the radio stations on the hospital TV. None of them were right. I looked at her and also told her "I been seeing UFO's." (LMFAO.) My fiance was also on the phone with my Mom at one point and heard me go off on a rant about "Those feckers had better not cut off my barbie's hair!!!" (I have no barbies... Haven't in years. ) Me: "My face itches." Mom: "Need me to scratch it?" Me: "No, I've got it." I started to scratch the top of my head aggressively. Mom: "That's not your face. That's your head." Me: "Close enough for government work!" And now there's just one more, and it's the one that thus far everyone has loved. Me: "I like Johnson!" Mom: "....What?" Me: "Johnson's space center!" This made pretty much everyone who heard it crack up. My nurse introduced us to another nurse with "This young lady REALLY loves NASA!" There's some other stuff I said after the first time I was put under for the surgery before this one, but none of it was as funny.
  12. I'm out and finally at home. Basically, we thought my shunt had been blocked. I was showing all the signs that something was wrong with it : Constant pressure headache, confusion, agitation, dizziness, vertigo, and vomiting/nausea. So he decided to do a shunt tap, which is pretty simple. They numb you up, shove a needle into the shunt's valve, and draw off fluid to check for infection. (They can also measure your pressure if they choose.) It's SO much easier than a spinal tap. At first, we thought they were just going to do that, then we found out no, Friday they were definitely going to open me up to check my abdomen. My Neurosurgeon found a LOT of scar tissue / adhesions when he opened my abdomen up, blocking off the draining ability of the shunt. He told my Mom : "No wonder she was miserable." He also said he moved the tubing upward in my body and that Sunday he'd x-ray me, and if it had stayed there, I'd get to go home. If not...well, he was calling in a general surgeon to move the tubing to some place safer. Either I or my Mom basically called him up and were like "HOLY SHIT, SURGERY NOW. so poor Kage was a little bit confused. So this time I go to sleep...and wake up with a big huge incision on the left side of my body, instead of the usual one on my right. They had to tunnel from the right side, to move the tubing over to the left side. I was also under suck heavy sedation, I was saying some pretty fecked up shit all through that night. I'll have to post it over in the need for a laugh thread, but one of the things that was a hit with everyone was I said Me: "I like Johnson!" Mom: "...What?" Me: "I like the Johnson space center!!!" (Which is in Houston.) One of my nurses informed another "This young lady REALLY likes Nasa." So I finally fully wake up and kinda am in hell. The pain was pretty damned bad. Still is but I've got some pain killers. I think part of my problem is due to the fact that they used staples on me and my body HATES them. Anyways, the good news is, my shunt is back to working properly! It'll take some time to heal up, but I'll get a little better each day. I missed you guys, and am so thankful for my Kage for being willing to take the time and do this. <3 I love all of you, thank y'all for the good vibes and everything else! Mystina
  13. I haven't had a migraine since I started busting. Get you some RC seeds, and try it! Those are what I started with, and they worked pretty damned well!
  14. I'd order more, definitely. That way you'll have them if you need them. I'm so sorry you're going through so much hell. Hoping and praying things get better for you!
  15. Oh no, anesthesia isn't all that simple. There's general anesthesia, conscience sedation, etc. They can make it so you just aren't supposed to remember the pain, or so that you're so out it doesn't register. Or effectively in a coma-like state so that you have to have something maintaining your airways since you can't. The fact is, while I was 'out' for my last surgery, I traumatized a noob neurosurgeon by sitting up, and shoving my hand in an incision, because they didn't have me under enough anesthesia. (Oh, and because some dumbass UNTIED ME. Who the feck thought THAT was a good idea?) Seriously, I've got OCD. I'd have asked for a glove had I been truly awake. My neurosurgeon says that even people with their brains open try to reach up and touch their brains, and thought it was pretty funny. Another note, my Mom and Cousin both have anesthesia awareness... Mom and I can't tan, at all, but my cousin can.
  16. I think the general consensus is...and I could be wrong here... that it's not just the caffeine that works. If you're looking at energy drinks, they contain Taurine, too. I haven't had any luck just taking caffeine / taurine supplements by themselves. It has to be in energy drink form, and needed around 2000mg of the taurine, otherwise it doesn't work for me. The little 5 hour energy shots do nada for me. Monster Hitman works due to the fact it's 2000mg of taurine though.
  17. Anytime I get a head cold, sinus infection, upper respiratory infection, my CH acts up a hell of a lot worse.
  18. I'm trying to remember what exactly was my point in posting this last night / yesterday... Because I really don't remember. XD I think I was thinking that maybe a similar gene or something similar might be changed like this in CH'ers, since a lot do not respond to narcotics.
  19. I found http://health.howstuffworks.com/medicine/surgeries-procedures/redhead-anesthesia.htm this interesting.... The second page discusses what might cause it. I was born with 1 strand of red hair on my head. (My Mom's response was "That can not be my child..." ) Then the hair turned blonde and curly. ....Figured I may as well post while I'm sitting up bored. XD Mystina
  20. Hmm.... We could convince the cults that form around the God Members to supply money to BOL research! BOL, Psilo, LSA, LSH, and LSD are our ambrosia! Congrats, btw!
  21. I started off as chronic. How long have you been in cycle? And what's your normal one?
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