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Everything posted by Pixie-elf

  1. Hi! You need to read the files in the ClusterBuster files. There are a few other options as well, if you read through the things there, you'll find that there are several things that can be used to successfully bust her cycle, other than shrooms. Like the D3 regimen, Hawaiian Baby Woodrose Seeds, or RC seeds. But first you definitely want to read all of the files so you'll be sure that you're prepared. Is your wife on any preventative medications? Or any abortives? Welcome to the board!
  2. Oh food tastes wonderful now that I'm off of the pamidronate infusions. I eat plenty now. I just seem incapable of gaining weight. (I guess because my body is still rebuilding my bones I think?) I'm on a LOT of antihistamines. I take Bromelain, the anti-inflammatory ingredient in pineapple. I actually have a pile of research links on it. I started using it because it's believed to reduce bradykinin in the body, which is believed to play a role in pain... but it's also a prostaglandin inhibitor. So I take 2000 GDU's / 500mg of it a day. I know it helps my over all body pain, and allergies. I don't go without it except right before surgeries! It's also really a great supplement to add to the D3 regimen, as it's a potent anti-inflammatory. Antihistamines don't make me sleepy as I've been on them for so long that they have no effect. I can, and have, taken 150mg of Cetirizine without getting sleepy. (I was taking that much about 10 years ago at one point.) I currently don't have to take that much, thankfully. I'm down to just 20mg per day of it. 80mg of Famotidine, and 4mg of Ketotifen. I'm allergic to Benadryl. From taking way too much of it at 16 to combat allergic reactions... Currently for sleep I take the Melatonin and 150mg of Trazodone. Most nights it knocks me out. Some I have more trouble. I sometimes take breaks from playing games, and I don't really notice a difference in quality of sleep. I think my brain is just super fucked up. XD I do take breaks from research, but researching kind of keeps me sane at times. I like helping people. Most of my friends know that they can call me or send me a message and ask "What do you know about x procedure?" "Have you ever had x done?" or "What can I take for x problem?" and I usually have an answer... Mainly because either someone in my family has gone through it, or I have. It gives me a purpose, and at least makes having gone through all of this worth something! Plus, it's fun finding things that the doctors didn't realize was going on! Thank you for your kindness and understanding. <3
  3. I'm in the US but I wanted to say welcome to the board, and good luck! I know we have a few users in Europe, and I'm sure someone would be happy to help you. Make sure you read, read, read. All of the files have tons of good information. I hope you find someone to guide you! <3
  4. Hi guys! Sorry for my rough re-entry. I probably should have held my tongue, but... Oopsie. My filter is broken, as we all know. There is no fixing it. I'm a little bit cranky (okay, probably a lot cranky.) due to not feeling so hot after my Xolair injection. They kind of piss the beast off. Or it seems to. Generally I feel like crap the week after then get better. Found out the cause for all of my allergies, likely mastocytosis, just can't confirm without a bone marrow biopsy... And my doctor does not want to put me through that. For which I'm thankful. We've pretty much confirmed it without that. I'm borderline on my prostaglandins, and I'm on a crap ton of things that inhibit prostaglandins (Birth control, Magnesium, Bromelain, Amytriptaline, a few other things I'm probably forgetting.) and my histamine in my urine test is high. So we started the Xolair treatments in December. And I haven't had to use epinephrine in 3 months! Which HOLY SHIT. That's like a total miracle for me! Since I was like 16 I have had to use epi at least once a month, if not more. Last year it got to the point within a 1 month period I had to use it 8 times... Which pretty much was scaring the everloving hell out of my doctors. So the fact that my disease has suddenly improved since the once a month injections is amazing. That's not the best part. I've also finally gotten to where I can tolerate the heat without hives! Last week I took a walk in the sunshine, in 87 degree weather, and I got my first sunburn since I was 11! A sunburn might not excite you, but I didn't even know it was happening! I also didn't vomit all over the place due to the heat! That's never happened before! Normally 75 or above and I start the vomit comet! I also take walks, maybe twice a week... 2 miles to 4 miles, trying to recover my strength from the pamidronate infusions. Basically I had all of the fun chemo reactions you could have to it. It was to fix the osteoporosis, and worth it... No new fractures since! But I was miserable. I also vomited a lot, food tasted like dirt, and only one week out of the month was really good. I eventually dropped too much weight to continue it. The Xolair should cure the mast cell disorder, which in turn, should cure the osteoporosis, in theory... So I have a possible cure for some of my conditions! On the CH side of things, I'm maintaining with botox, DALT, and D.H.E. I forget to take the Dalt at times due to other brain issues. Botox lowers the intensity, but I'll take anything at this point. I had 1 month free after a Ketamine infusion last year. It was AMAZING. No clusters or migraines. I still can't really do the D3 regimen because of my issues with idiopathic intracranial hypertension. Currently we have to run my shunt at low level to prevent me from going blind, so I've usually got a low pressure headache from it unless I'm laying flat, or have drank some form of caffeine. I've fixed it somewhat with the Nexplannon Birth Control implant to kind of boost my spinal fluid. But with as bad of pressure headaches as the large doses of vitamins tend to cause me, I'm afraid to try it, and due to the fact it could risk my vision. There's also the fact that with mast cell disorders, you tend to have problems with absorbing vitamins. So I'm not exactly sure if it would work with me? So yeah. Still foul mouthed as ever. Still taking care of Mom when she isn't taking care of me. Spend time outside now along with playing video games. Also have started planting things, which makes sure I get up every day and water something other than my cats even when I feel like crap. Trying to become a little bit less disabled. Oh, does anyone have any good books to recommend? I go to the library a lot. I love me some fantasy and sci-fi. I love y'all, I have never forgotten about you and appreciate everything you have done for me. <3
  5. They're going pretty good as far as I'm concerned. I'll probably do an update post at some point. <3
  6. Cymbalta is a pretty good med for nerve pain all around. My Mom was on it for her fibromyalgia. She didn't have any nausea or anything, just some hives. (She's not on it any more.) So it may work for CH too. Another that's off topic, that you might look into, is Zonegran / Zonisamide. It's kind of like Topamax's little sister but without such severe side effects. Carbonic Anhydrase Inhibitor. Basically it has way less brain fog.
  7. I'm not sure if I count as a nerve block success or not. I can't have steroids, I've got a mast cell disorder (most likely mastocytosis, but my allergist doesn't want to do a bone marrow biopsy to confirm, so right now we're just saying Mast Cell disorder.) and I'm allergic to them. Lidocaine blocks helped. Radio-frequency-ablation helped the first go-around but I side switched. So the next month they burned both sides. Somehow it made the pain much worse. For about 6 months. They said my nerves grew back within a week? I have no idea if that's even possible or if pain management was talking out of their ass but they didn't want to touch me after that. Now I get botox every 3 months like clockwork, and it dulls the intensity of the CH a good bit. It's kind of a stop-gap measure and I can tell every 10 weeks or so that it starts to wear off. I have major alien forehead. Still get hit. Don't always get woke up by my 3:43am screamer anymore though, and I'm taking a shit ton of Melatonin. When it starts to wear off, I start waking up then. Or 2:43am when the time changes...
  8. I've had them since I was a kid, but that's due to my IIH... They can run in families. I'm not sure if they run in mine because I know my Great Granddad had Parkinsons, and my Papa started getting tremors shortly before he died and probably needed to be checked. (Autopsy didn't show it, but I don't know if it would?)
  9. I know I'm late to this party, but could it be an elongated shadow? Like, with as bad as pollen season is around all over, it might be that... Also I know for myself, that if I have a stuffed up nose, my head is going to RAGE.... So you might get some 4way nasal spray and try that on him. Sometimes it helps some people as it's a vasoconstrictor too.. I saw that tip a long long time ago, in a far away land, known as the CH.org forum. LOL. Some people attempted to abort with it if I remember correctly.... Just don't overuse it or you'll get a nasty set of rebound sinus congestion!
  10. I know you're hurting, but the important thing to remember is that you gave him the best 2 years he EVER would have had. You gave him 2 years he wouldn't have gotten with someone else. You gave him 2 years of LOVE that he couldn't have had otherwise. He would want you to know that he died happy, and loved, and that was the best way to go. You did the best thing you could have. Those two years are what mattered, and the ones that came before? Didn't mean anything to him, because he was with YOU, and you loved him. And that's all that they EVER want. You gave that to him. I am so sorry for your loss.
  11. HOLY FECK. HOLY FEEEEEEEEEEECK. *Hugs* That's all this chick has to say. Michael. Holy FECK man.
  12. Radiofrequency ablation, in case no one has mentioned it... Let's set fire to them nerves. Stadol Seroquel 500 other things I can't remember right now.
  13. Denny, I'd like to sell you a boat. Because, I know for a fact, you and I both are going to need one after this feckin' week o' rain, amirite?
  14. A friend of mine posted these. I love them SO MUCH. They're seriously fantastic!
  15. I pre-qualified for the chronic one, but nothing in my area. Still excited though. Poop on them for not letting it be like up to 70. Omg, Denny, that beard is fecking fabulous.
  16. Sherri, where do you live? Is there a place called MHMR near you? If you're in Texas, there should be. It's called Mental Health, Mental Retardation, but they help with ALL kinds of disabilities. If you aren't in Texas, just search your state for "MHMR" and your city, and it should pull up something with resources similar. They will, for free, fill out the paperwork you need, because they know HOW to do it. They know what disability is looking for, and obviously, the social worker had NO IDEA what the hell they wanted! I will also advise that if you have depression along with any of your conditions, it is much easier to get it for that. MHMR actually got one of my cousins his disability on his first try for severe COPD. Which is pretty much UNHEARD of... We went to them for my second try, because I was 14, and there was no chance of me EVER working. I had a list of conditions that was pretty long and was sick as hell. You are almost ALWAYS denied the first time unless you are on a ventilator. (My Mom was, which is how I know. She was approved because, hey, give it to the people who are about to die, amirite?) Or unless you have a lawyer. You will get backpay for up to that date though. And your insurance / medicaid SHOULD retroactively cover up to then. So, basically, you can go that route, or try a lawyer. Do whatever feels best to you. Good luck, honey! MHMR got my disability and we have recommended them EVER since, since they are free, and do it to help out anyone who needs it.
  17. I've tried the 5-meo-dalt. It helped. I'm actually due a dose, but being that I need my shunt adjusted, I'm gonna wait to get THAT done and then bust with it again. I know Cindy has had success with it too...
  18. Oh my God. This is so sad. I'm so sorry, Bob. This breaks my heart... Prayers for his family, he is on to the next adventure...
  19. http://morningafter.gawker.com/have-you-ever-cried-on-big-bosoms-1694588850 Or at least I do. I lolled.
  20. Yes. It is the CNA's job. Or used to be. Not anymore. Not in the three hospitals I have dealt with over the last several years. Five days and no clean sheets or bath is what you are expected to accept!!!! > When I got to my room after back surgery, the aid refused to even help me roll over. The back pad was in place for that, but she absolutely refused to help. After I had just spent 8-9 hours in surgery. Then I was told that I had no 'magic button' as they no longer did that. Then I raised hell. Called my surgeon too. I hurt like the dickens and was getting no where with them. The direct delivery system was set for continuous release of pain med. I was supposed to have the patient button for immediate release of more into my IV when I needed it. She was told not to return to my room and the floor nurse came in and took over. I let them know that I would not be treated that way by anyone and while I was not ambulatory, my husband would raise hell at my request. Also, told her that I would contact the head nurse of the hospital as we had a very good working relationship since the nursing staff f'ed up my 12 year old's pain meds years before. Things rapidly got better, but my back up stayed in the room for the entire stay. Since then, I have been 'lost' twice after surgery!!!!! My husband breached their sacred doors with 'Where is my wife' both times. Once, I was found in a far room, alone. The other, the head anesthesia doctor was confronted and admitted that the anesthesia nurse had OD'ed three of us with a 5 hour dose 'put you out med' for less than an hour of surgery. He was really angry and had spent the last 4 hours with me keeping me going on the ventilator and additional drugs to keep my lungs clear and me alive. I had to stay in the OR for 5 hours!!!! Trust them not. Enough of my trials. As I said, you would make a great advocate for any patient. 8-) HOLY FUUUUUUUUCK. Can I please go set these people on fire? LET ME SET THEM ON FIRE. PLEASE LET ME SET THEM ALL ON FIRE. OMG. SO MUCH FIRE. SO MUCH FIRE, ALL OF THE FIRES. I am so glad you made it out of that okay. Like seriously. SO THANKFUL. That's so scary and horrific! GIIIIIIIRL, if they ever try that shit again, threaten to get the NEWS station up in there! Also, one of our hospitals "lost" an "aunt" of mine while Mom was in the hospital. After her surgery. We were like "How the feck do you LOSE someone?! Like, where are they gonna go? IT'S NOT THAT BIG OF A HOSPITAL?" You can't misplace people that easily BY GOD. I mean what the HELL man! We both need to become advocates and burn all of these hospitals down with our anger at them being motherbitches, as my Marcos would say. BURN THEM. BURN THEM HORRIBLY. RAAAAAAAAAAAAAAAAAAAAAAAAAAGE. Okay done with rage. I do have a question, how are Ron and Michael doing, does anyone know?
  21. Holy shit! That's got to be a health code violation of some sort... See, the hospital Mom was at had magnet status in nursing, and they have to pretty much uphold certain standards to keep it. Otherwise, if they don't, they lose funding, and a lot of other stuff. So most of the nurses were good to her and she got a lot of good care, but some had no idea what the hell they were doing. Also, if they don't do the bathing, or the changing of the sheets, what the hell are they being paid for? I know the aides are supposed to do that kind of stuff usually since the nurses are busy but damn. It's got to be SOMEONE'S job.
  22. Fab, I dunno you, but I'm thinking about you, and praying for you. I hope you get well soon! <3 Mystina
  23. Boo, you lucky episodics! *Shakes fist* Just kidding. My botox and multiple drug allergies probably rules me out... Good luck to those of you who try it out! So excited for this!
  24. Very interesting. https://openpaymentsdata.cms.gov/ Link to see what / if your doctor did anything for drug companies and such.
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