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Everything posted by Pixie-elf

  1. I'm so happy for you! You deserve this pain free time so much, and to be able to eat whatever you want is wonderful! To have your old friends come back is also wonderful too! Mystina
  2. Wait, what's Sid slang for? I missed the boat on that one. (....I just figured it out. LSD. LOL.) Welcome home Zipzip! I've been chronic for 2.5 years. I've tried every drug that they could try me on. (and had godawful reactions to most of 'em.) The RC seeds have helped me SO MUCH. I'm like you, my cycle has just gotten worse, and worse as it's gone on. After almost 3 years, I finally understand again what it's like to have a kip level 1 hit... And that's saying something. The RC seeds are awesome. Welcome, good luck, and PFDAN's for you soon hopefully! Mystina
  3. I want to come! Mmm. Rum. Just don't look at me and ask why the rum's gone, I didn't do it. My Mom suggested we just send my boyfriend a ticket, make him go, and bring me back quite a few cases of that drink. Bwhaha. Mystina
  4. I somehow missed this, Happy belated Birthday Bob! I'm so thankful that you're here, and that you started Clusterbusters. I wish you many more great, cluster-free birthdays! Mystina
  5. But can you do the same with habeneros? I can eat them cooked in a meal, but I can't stomach habeneros by themselves. But then, I remember a cajun gal that would eat habeneros by themselves like candy! Bob I can eat them on their own. They just seem a bit 'warm' to me. Funny thing is, my Mom can't stand hot stuff. My aunt likes it, but when my Papa was alive, he and I were the only two who could eat whatever I made...because I put too many peppers in it.
  6. As far as I'm concerned you can never have enough jalapenos... Then again, I'm cajun. I'll eat Jalapenos on their own. XD
  7. Good luck, I'm praying for y'all. Mystina
  8. The same thing happens to me when I'm getting hit. My temperature goes up. I'll sometimes spike a low-grade fever. I haven't had the flu in years, but any head cold I've gotten has made my CH worse. I've had probably 3-4 head colds, and one case of strep in the past 2.5 years. (Strep was last month.) I can't wait to see where this leads. XD Mystina
  9. I'm 26 right now. Uh... you want my medical history? It's long and complicated. So I'm just gonna list what I've got/had done. I don't think my disease list covers everything, but I'll list it. Complicated Migraines Memory Loss Pseudotumor Cerebri Abdominal pain Allergy Uticaria Vocal Chord Dysfunction Asthma Allergic Rhinitis Hypothyroidisim Epilepsy Abdominal Pain with Bleeding Gastritis Chronic Depression Chronic Interstital Cystitis Obsessive Compulsive Disorder Closed Lumbar Injury Chronic Sinusitus Post Traumatic Stress Syndrome Bronchitis Eczema Anemia Rickets Osteopenia Histamine Intolerance Syndrome Cluster Headaches IBS with constipation Intramural Uterine Fibroid Idiopathic Angioedema Also, all of my doctors are positive I have some severe autoimmune disease that no one has diagnosed yet. A blood disorder, too. No one has been able to figure it out. I once nicked myself shaving, and it looked like someone had been murdered in the bathroom. Pityrosporum Folliculitis, too. Quite a lot about the last year, but I'd rather say it all, than leave anything out. Mom and I both in distress at birth. Appeared perfectly normal. Central Apnea from birth. (Discovered at 12.) Urticaria / Anaphylactic reactions from the age of 9 months onward. Chronic Asthma from 2 years old, grew out of most of it as a teenager, but was inhaled steroids as a child. Chronic bronchitis. PTSD from 2 years old onward. Chronic sinusitis from 2, at 5 had "Windows surgery" 5-6 they went in, re-opened and enlarged windows, removed polyps. 3 surgeries in all. T&A at 5. Complicated migraines began at 9. Sub-arachnoid hemorrhage suspected, 9 Lumbar punctures in a period of about 24 hours. Epilepsy diagnosed at 9 later on. After mis-diagnosis as low blood sugar. Hips popping out of place / dislocating diagnosed at 9. Hit in the left eye with a plastic golf club by Grandpa trying to teach me to golf. Had no idea I was behind him. Cluster side mainly on that side. Also ran headfirst into a buggy at a supermarket and went out cold. 11, Giardia infection due to swimming in a polluted creek. Taken off of 80mg of Elavil to prevent migraines because of antibiotics needed. 2-week long headaches result. Ulcer, too. 12, Christmas time of same year as 11, diagnosed with Pseudotumor Cerebri / Idiopathic Intracranial hypertension. Diuretics did not work on me, had 1 lumbar puncture per week for 4 years. Have now had over 250 LP's. Put on Klonopin for the migraines, triggered chemical imbalance that I have never recovered from. Was depressed and suicidal for 2 weeks, put on Zoloft to help. 12-13 (not exactly sure when) Flatlined/Coded during LP. Had been given a suppository the night before that shut my gut down. Anesthesia does not like food on your stomach during procedures. Mom watched the whole thing, was dragged out, brought back in 45 minutes later. No brain damage found, considered a miracle by all involved. Was up and walking around the next day, chest was black and blue for over a month after. 13, tried on Pred for the IIH. Developed 2 compression fractures to my spine after tapering off of it. Assumed to be due to the pred. Took off turtleshell brace after 6 weeks. 14, Uh oh, more compression fractures. Pedi-neurologist checks out the full body MRI from age 9, discovers 2 compression fractures no one noticed at the time. Diagnosed with Idiopathic Osteoporosis. Grandmother died right after birthday. OCD began. 15, Seizures become active again. Spend year having severe gastritis off and on. No known cause at the time of the seizures, or the gastritis. Put on Depakote right before turning 16, increased blood ammonia level to 140, hospitalized for liver failure, removed from Depakote, tried on IV Dilantin. BP dropped to 70/25. Went into status seizure, then coma for 3 days. Told it was another miracle that there was no brain damage, or heart damage, or liver damage. 16, Appendix ruptured in Oct. Was left in for over 36 hours, no one had any idea it wasn't in tact. Spent almost 3 hours in surgery having it 'chiseled' out. Supposed to have been in the hospital for 1 month, left before 2 weeks were up. Healed fast. Diagnosed with Hypothyroid. Rickets. Body never would absorb vitamin D. Case of MRSA staph. Joy. Zoloft quit working, tried on Paxil, became psychobitch, put on Welbutrin. 17, seizures stopped completely. No known reason. IIH continued to cause problems. Severe trauma during this year during an LP that went bad, refused to have any more for 3 years. 18-21, anaphylatic reactions continuously get worse. Began having LP's again at 20. IIH goes into remission after 21st birthday. 22, Stomach pain begins again. They spent 2 years trying to figure it out. Had first angioedema reaction somewhere around here. 23, Bleeding / horrible periods begin to get worse. Diagnosed with a Uterine Fibroid. Intramuscular. Put on Ketotifen sometime this year I believe. 23-24, Gallbladder removed on Jan, 4, 2008. Stomach problems cease other than IBS with constipation. May 28th 2008, Cluster Headaches begin. Yay. Welcome to hell! 24-25: PTC/IIH comes back in May 2009. LP determines it is back for sure in July 2009. LP relief only lasts for 2 weeks, shunt is decided on. Lumbar Peritoneal Shunt is put in August, 13, 2009. (I didn't want one jammed into my brain, thank you very much.) 1 month of some of the worst pain I'd been in next to cluster pain. Everyone warns you that the surgery for a shunt is horrible, it really is. There are no words. My Grandpa (Papa, the man who raised me with my Mom.) dies September 22 2009. Worst day of my life. Sept 28 2009, I notice that my stomach does not feel right, go to the ER, find out that oh boy, my shunt in the peritoneal cavity has popped out of place. Oct 23 2009, shunt is put back in place. Nov 11 2009, shunt is back out of place again. Dec 11 2009, surgery to put shunt back in place is cancelled when it's revealed I now have about 7 dental infections. Thanks Mobic, for killing my tooth nerves! GREAT SIDE EFFECT MAN. I was on it at some point when I was 16-21 for the chronic back and bone pain due to the osteoporosis. Jan 7th- January 14th 2010, ER visit reveals that my shunt has in fact disappeared into my body. Which, should be impossible, ER is horrified, we are horrified. They send me home on vicodin, which, does not help. End up back at ER, transferred to Galveston since the Beaumont ER has no idea wtf is going on, and once you have a neurosurgeon, all of the doctors believe that you have some kind of cooties. They don't warn you that once you get a neurosurgeon, no other neurosurgeon is allowed to touch you. One of the neurologists / neurosurgeons on my team convinces the dental surgeons (That's not what they actually are, I can't remember) to pull 4 of my teeth so I can have my shunt surgery. 4 days of procedures back to back. LP in my room, which fails. LP down in day surgery with anesthesia and floroscopy which works, teeth pulled, then shunt surgery. Now, here's the best part. I find out the next day the shunt popped out of place because I had been so severely constipated the tubing in my stomach was literally forced out. The newbie neurosurgeon informs me that "You kinda freaked us out after your surgery." "What'd I do?" "Well, after Dr.Anderson had put your shunt back in place, I was supposed to sew you up. We had towels on your abdomen. You kinda woke up, and sat up and shoved your hand into your incision." He was making a "WHY DID YOU TRAUMATIZE ME BY DOING THIS?!" look on his face. I have clearly irrevocably disturbed this man. Mom and I had been wondering why they had me hooked up to a bag of Vancomycin. My response after he left was "Who in the hell untied me? They velcro'd my hands down before working on me!! WHAT IDIOT DID THAT? I would have asked for a glove before doing that if I'd been awake!" Shunt problems are fixed. CH takes center stage again. Headache specialist puts me on Seroquel, since I'd been on it for the anaphylactic reactions about 2 years previously. July 21st 2010, we do an occipital nerve block. I consent to Triamcinolone being injected into the back of my head since steroids are the only thing we haven't tried... and since I felt like I had no other options. The lidocaine works, my pain is better for the 2 hours afterwards. We thought the Triamcinolone would be okay because I had a lotion of that a few years ago and it did absolutely nothing to me. 1 week later, exactly, the steroid kicks in. Proving I cannot use steroids by making the beast attack worse. I see pain management 9/9/10, we decide to try RFA on my left occipital nerve. It works for about 2 weeks, then the pain is worse. Pretty sure I was okay at first due to the Ketamine included in the anesthesia. That RFA was on Oct, 13, 2010. Dents appear in my head around the 30th. No one can figure out why. Pain increases, becomes worse, starts up worse on the right side, too. Pain management convinces me to try RFA again! Yeah, let's do that! Both occipital nerves! Nov 16th, 2010, I have it again, start sobbing during it because I'm hit so hard. They give me Fentanyl, it gets better, then I spend the next 48 hours unable to sleep due to the hits. End up at the ER, it takes 20mg of Morphine to kill the hit I have. That had never happened before. I see a cancer specialist / TN specialist, she puts me on Methadone Nov 30th. It helps lots, we set up TN block for the 14th of Dec. It backfires, the pain is more severe, by the 21st, she's sure I'm no candidate for any surgeries. Methadone is the best option. She refers me back to another doctor in the practice, I see him January 20th, he decides since I had 11 days where the pain had flared up again that the Methadone is too risky. He took me off of it, told me I had no options. I consider the CH terminal at this point, so I start looking at cluster busters. Oh, height and weight... 5'7", right now I'm about 175lbs, but I've lost like...65 since the shunt was put in. It's just kinda removed all of the excess water weight I had. I'm still currently losing weight at this point. I don't smoke. Even smelling pot leaves triggers me. Oddly alcohol does nothing at all to me. The scent of Gasoline sets my head off horribly, too. Had allergic reactions to most of the medications, too. Lamictal was the most messed up. I took it, began laughing hysterically, and THEN my throat closed up. I wanted to keep the bottle around just in case I was ever severely depressed. My Grandpa threw it out. Most anti-epilepsy medications I'd already had anaphylactic reactions to. Verapamil worked but closed my throat up. Cardizem, Lamictal, Indomethacin. Lots of others. Hope this helps someone. Mystina
  10. Getting off of the Methadone was easy for me, I was on a low dose, and my body didn't hold it for more than 6 hours at a time. (My drug metabolism is pretty messed up...) I've read about how hard it was for people to quit it, and how horrible the withdrawals were. I'm sorry you had to go through that. To be blunt... I am at the point that the CH is terminal for me. The doctor who put me on the Methadone in the first place understood that very well... She was also cancer doctor. (And has switched to only treating cancer patients...) The one who took me off of it, was more concerned with I don't know what. Getting a lawsuit if it killed me somehow. So my plan is.... bust. Bust until it works. And, on the off chance that it doesn't? I will hospitalize myself. I refuse to let my family be destroyed because I had no options. The beast DOES NOT get to win this. There has to be some doctor who will be willing to keep me alive until BOL is released. (I don't know any chemists, unfortunately.) Thank you for your good wishes, I'm positive that busting has got to be the answer to this hell. Once it works, I WILL tell my headache specialist, and she will be thrilled. She's on my side on this. Mystina
  11. I disappeared from the main CH board for a year and a half due in part to a lot of crap happening. Computers getting screwed up, losing the internet, grieving, and just generally having life fuck me up. I was also in a place where the pain was so severe, I wasn't much use to anyone but those closest to me. When the disease is fixed, or under control, I think people forget about it. I've mostly forgotten about my Pseudotumor Cerebri/Idiopathic Intracranial Hypertension since I've had my shunt put in. I just don't think about it unless my pressure is up (and then, I'm a complete idiot who can't think properly) or the shunt is fucking up (Hasn't for 1 year now. I'm lucky.) It's not that I don't care about others with the disease... it's that other things have come up, and my brain is pretty much occupied in dealing with it. It doesn't mean I don't care, or don't think about the others with it. Life just has gotten so hectic, the PTC is better, and I just don't think about it. There was even speculation on the IIH board that the reason we don't hear that many "Happy Ending" stories with shunts, is because people are there while it's not working... and forget to tell everyone "OH MY GOD. IT WORKED." because once it works, you're good to go, no need to think about the disease again. Not until replacement, infection, or revision. (When it's any of those, you go back, because your life is on the line again.) It's different when you have to take something regularly for it, I think. If you have to be aware, and stand guard against it. I'm so thankful to everyone who IS here... those who are able to be here, and offer advice. Mystina
  12. The doctor who was treating me had mentioned with chronic pain, there's a thing called pain wind up. Methadone has been proven to help with this... The longer you're on it, the more the nerves calm down. It helped... a hell of a lot. I had some quality of life for 1 month. I've got nephews who are almost 4, and one who is 6. I babysat them for 8 months, so they got to know my clusters up close and personal. There wasn't a day that went by that they didn't see me fighting them. They would come kiss me, ask me if my head hurt, sit in my lap while I used my oxygen. They could always tell when I was hurting. They'd tell me to feel better, or ask me if I had a headache. 2 weeks of being on the Methadone, and I went over to see them. It was the first time in 2 and a half years that they didn't once ask me if my head hurt... or if I felt bad... they could SEE a difference. They could tell. Hell, my doctor could tell, at least the one who prescribed it in the first place. I'm hoping and praying that busting will fix this, because I want more days like that. Mystina
  13. My half brother is bipolar. Both of my half brothers have ADHD. That doesn't mean that I have it, or will get it. Just because some genes happen to be there, it doesn't mean it's absolutely going to happen. At least, that's how I view it, and how my doctors view it. If he's done LSD before and been fine, I'd say not to worry about it. If it was going to cause him problems with schizophrenia, I'm betting it would have then. This is just my guess though. I've got a bunch of mentally ill people in my family, and extended / adopted family. I know one person who's grandfather was schizophrenic, and she is too. (She's a child, which makes it pretty horrible.) There were signs from early childhood in both of them that this was there. I think in the end, no one can really tell you for certain. If he's not worried, I wouldn't worry. Trust his gut. Mystina
  14. I've had both occipital nerves ablated. The first time it went numb for about a week, it was just my left one. My hits were still the same, but stopped being triggered by the occipital nerve. 2 weeks later, the pain got worse. The right side decided to start acting up to, so I agreed to let the pain management doctor do both sides. I figured that at least if this time went bad, since I was out of options, he'd have to treat me with something. I was very wrong. I spent 2 days awake after that procedure, suicidal, finally went to the ER. This was done in October, then November. I began to sob during the second procedure because it triggered me so severely. December a Trigeminal Nerve specialist realized I am no candidate for any surgeries. She put me on Methadone, which actually helped, then sent me back to the other pain management doctor. The pain management doctor who did the surgeries, last month, declared that since I had 11 bad days before my appointment (the neuralgia like pain was back in my occipital nerves) I wasn't a candidate for anything, took me off of the Methadone, and now there's no one who accepts Medicaid and will treat me, at this point. Sure, these procedures work for some people, but they can also backfire in a horrible way. It backfired on me, and I have nothing to show for it. Except that the beast is attacking even worse. I'm not going to fuck with it anymore. I'm here to find out what else I can do. My headache specialist is at a loss, so really, at this point, with no options left, I don't expect to remain alive until bromo-2 is released for everyone... So I've joined ClusterBusters, to see what the hell I can do that the doctors can't, or won't.
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