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Everything posted by Pixie-elf

  1. I haven't had a migraine since I started busting. That's saying a lot. I used to have 'em pretty frequently. I've had them since I was 9. I'm 27 now. Hell, my periods used to be a constant migraine. Now? Nope. No migraines since I started busting. I feel a hell of a lot more free without 'em. Mystina
  2. Happy Birthday Ricardo! And of course it does. My Ketotifen was denied because it was shitty for asthma except for Allergy Induced and the company wanted to market it for that. My allergist has done work for the FDA and he was like.. MARKET IT FOR HIVES. It works GREAT for hives. This will make peoples lives so much better! Nope. Company wanted to be stupid. FDA said no because they wouldn't market it for hives / anaphylaxis. Utter bullshit. So I hate 'em most of the time. Urrrgh. Mystina
  3. Hon, I thought this year was going to be my last before I tried the RC seeds. You can get those in the mail, now, and dose with them, while waiting for mushrooms to grow. There's hope. I'm a chronic of 3 and a half years now, and this has helped me manage things. I literally had no options when I came here, except this. It has saved my life. I would be locked away in a mental hospital, or dead, if it was not for Cluster Busters. You can pull through this. We're here for you and we will help you! Mystina
  4. In Texas, we have what's called MHMR. Mental Health, Mental Retardation. They take care of services for the mentally handicapped, and disabled. I don't know if it works like this in other states, but here, you go to MHMR and let them know that you need help getting on Disability. They have people who specifically fill out the paperwork, get the information from your doctors, etc. It's at no cost to you, as the government takes care of the service. If you have depression due to the CH? Mention it. You can be put on SSD for depression alone. My Aunt is disabled due to her depression and cannot work because of it. I know there are other places like MHMR, so check in your state to see what they have there. Each state has places that take care of mental health. Mystina
  5. It's not supposed to be funny. That's what's so great about it! HE MOVES AWAY FROM THE MIC TO BREATHE IN. He got paid by Dr.Pepper to do that, because of it. XD
  6. I'm so thankful for all of you, that you're here. Happy Thanksgiving everyone!
  7. I'm sorry you're having such a rough time! Could the Zomig possibly be blocking the effects of the Ketamine, like it and trex block the mushrooms? Just my thoughts on it. Hope something gets better! Mystina
  8. I can't watch this video without laughing. Actually, I can't hear the song without it making me think of the video, and then I start laughing.
  9. Well, I normally have kinda low BP. 80 over 60. When I'm getting hit, I've had the top number hit 142. Pain tends to increase your BP. That's about all I know about it.
  10. Okay, I saw the endocrine doctor and he said he wished I would have stayed on the Spironolactone just until the visit so he could have seen the full results of it. He was okay with me stopping it though. I'm on the high side of normal he said, so he's okay with not treating the imbalance. He also said I had pretty much the opposite reaction to what you'd get with Spironolactone. I already feel like the hits I am having are better since stopping it, I don't feel as crappy. I wouldn't be surprised if dosing had actually increased my testosterone a bit, to better 'manage' the CH. I know them trying to lower mine screwed me up worse! Mystina
  11. Well I have basically dismissed all my doctors except for my PCP, since he is the only one that hasnt caused more problems when trying to fix the ones I originally have. Thanks for the advice and the insight, but due to what has happened over the years with me and doctors, I have become my own doctor. Silly? maybe... Its hard to accept your own mistakes, but when someone else makes them for you, its much much harder. AO I get it completely! I'd do the same in your position. I know one of the side effects of Ketotifen is also nasal dryness... (I dislike the FDA because they refused to let it be released here for stupid, stupid reasons.) Any idea what the ingredient was? Found it... http://en.wikipedia.org/wiki/Phenylpropanolamine No wonder it helped, it released Epinephrine! Mystina
  12. Back on topic: I think I'm already feeling better after 2 days of not taking the Spironolactone. It's going to take at least a month for the stuff to fully get out of my system, and it might just be the fact my head cold is better... But I feel less fatigued.
  13. Benadryl is your OTC anti depressant, when busting, these kinds of medications need to be detoxed and steered clear from. Wouldn't benadryl be the same thing? While I was taking this med ( I have year round allergies, foods pollens dust molds, it is impossible for me to keep away from them, I would need a full face respirator and have to live in a bubble, matter of fact my allergist prescribed me a full face respirator and said i need to wear it all the time) allergy symtoms were better, ch was down, but I needed to take benadryl every four hours, just wasnt practical. As I started to shy away from the benadryl, my activity picked up and I dosed. problem was the dose was uneffective, no effects, as if I didnt even dose. ...after stopping the benadryl and being really depressed for a few days I dosed again and I recieved effects and the melting stretching feeling we all love. Even though "suppositly" ( I havent looked) it says in our faqs or busting guidelines that "benadryl is okay" I dont think it is, due to its effects on serotonin, and psilo/lsd/lsa mimic serotonin, IME I find Benadryl to block or hinder busting "In the 1960s, diphenhydramine was found to inhibit reuptake of the neurotransmitter serotonin. This discovery led to a search for viable antidepressants with similar structures and fewer side-effects, culminating in the invention of fluoxetine (Prozac), a selective serotonin reuptake inhibitor (SSRI).[24][25] A similar search had previously led to the synthesis of the first SSRI, zimelidine, from brompheniramine, also an antihistamine." AO Holy crap, I had NO idea that it worked as that. In that case yeah, taking it would be bad. I can add one more to the list Chlor-trimeton / http://en.wikipedia.org/wiki/Chlorphenamine AO: Have you tried Zyrtec? If so, and it hasn't worked, you might want to ask your doctor about Ketotifen. You can get it from Canada if needed... Best antihistamine I've EVER taken.
  14. Ting: It seems in most cluster-sufferers, it's LOW testosterone levels... I don't know if there are any signs for that in women really. That's what you want to be checked for! Oh no, the neurologist heard about this, and figured my hormonal problem played a part in some of my headaches. He even stated it might be some strange combination of several of my conditions. I have a hard time believing this. All signs point to clusters... All other tests have proven normal. And I have a hard time wanting to prove anything to a doctor who doesn't believe in Chronic Cluster Headaches. I'm kinda happy I don't have to see him for 4 months to be honest.
  15. I wanted to update this. I'd been on the Spironolactone for over a month... Friday I saw neurology and found out I gained 10 FREAKING POUNDS. Nothing has changed in the past month other than this medication, and I've felt like crap since I've been on it! I see endocrine on Wednesday, but my head is throbbing, and I think this crap has something to do with it. Did some research, other women have had the same result. I didn't factor in once I got to Chicago that "Hey...Maybe the Spironolactone is what's got me going back into high cycle a bit early...." I was thinking earlier "Maybe I should dose" then I realized "Wait, what if...." I'll update over the next few days how things go. If Endocrine can put me on something else to lower the testosterone, fine, if not, I'll take the high testosterone and less headaches, thank you very much!
  16. Also, I'm a non-smoking woman, this also makes me unlikely to have cluster headaches!
  17. The number of times I've had doctors tell me I couldn't have something because of x... is so silly. I really want to go back to some old doctors and show them what they were too stupid to diagnose me with and go "WHAT NOW, BITCHES?!" lmao
  18. He explained why he didn't think it would work for the situation, I can't remember exactly what he said, though. I wasn't really aggravated about that. The botox he kinda doubts he can get approved at all by Medicaid. The other idea he had was to send me to the Oral and Maxillofacial Surgeons to see if my TMJhttp://en.wikipedia.org/wiki/TMJD is part of the problem. I tried Indomethacin, but my body didn't tolerate it at all... I got hives and puked up blood, so no Indomethacin test again for me. The other thing is, NO anti-inflammatories, have helped my headaches really. Ibuprofen helps minor hits since I've been dosing, but if it's anything above a 2? Nope. He said I have some cluster-like symptoms, but me having them every day, with no breaks at all = not cluster headaches. From the way he explained it, it sounded like he only considered Episodic people to have real cluster headaches. His explanation was that I had to have cluster 'periods' and then 'breaks' from the clusters. Otherwise it wasn't CH. The problem is, I can't really give him the boot. Medicaid has me screwed as far as getting a new neurologist. We've tried before. So I may just have to deal with him not knowing what the hell chronic CH is. I have to have someone to deal with my other neurological conditions, so, it's not like I can just opt to not have a neurologist. The good thing is at least he's trying to find an answer, but gah. I don't have a constant headache like they say those with HC have. I've had hits on both sides. Thank y'all for the support. <3 Today is better.
  19. Yup, that's where I ordered mine from. They had good potency too.
  20. If I didn't need a neurologist to take care of my other conditions, I would totally say screw neurology. Bare in mind, my neurologist has no idea about what I use as an alternative treatment. The hospital would not treat me at all if they found out I'm pretty sure... So, my Headache Specialist left the only place I can get treatment in April of this year. I was placed in the care of the head of neurology. Since I've been having headaches for 3 years straight, with no break, this must mean I do not have CH according to him. Because a CH sufferer has 'breaks' between clusters. Oh, and the fact that on bad days I have up to 8... Instead it might be hemicrania continua. At least that's what he thinks. I've also got a history of TMJ. He thinks that could be complicating things, so I do give him props for deciding to check it out to see if fixing that will help my headaches... But the fact is, the misinformation that doctors have on our condition makes me fecking sick. I really like my doctor, but it disappointed me SO MUCH to hear that to some doctors, us chronics don't exist. It was also a big No on trying Ketamine, I asked if he could hospitalize me and try it. The other thing he's suggested, if Medicaid would ever cover it is botox. But I don't think my problem is with the muscles/nerves. It's my freaking brain... There are no words that can tell you all how thankful I am for all of you. The fact that you're here, that you care, the information and support you all provide... All of the information you've gathered on busting, it's saved my life. I love all of you. Mystina
  21. Okay, with the PMD stuff / referring doctor, I know at least with Medicaid as insurance, you HAVE to be referred by your primary physician or someone else, to go see a specialist. Sometimes one specialist can refer you to another kind, too. But with Medicaid at least in Texas, that's how it works. Hope you guys get in ASAP. Praying for you and Michael! Mystina
  22. http://www.youtube.com/watch?v=DbYtqAWDF2U The Ding Ding Dong Song. It is SO WRONG. When I was in Chicago our gaming guild did a big game... I used him as one of my characters. The only problem was one of the girls in our guild has some brain damage and is pretty innocent due to it... At one point I started singing the song. She asked us "What's a ding ding dong?" .... Yeah, her Mom just yelled out "IT'S A P*NIS HONEY." It was EPIC. Edited because: It changed what I wrote to THINGY. o_o Much less funny!
  23. Get a Pyramid like on the dollar bill, but instead of it being the All Seeing Eye on it, have it be the ALL SQUINTING EYE. My only other idea is do a real life impression of the picture http://en.wikipedia.org/wiki/File:Clusterhead.jpg Make it look like the hand is going in your cluster side eye. Other people might not get it though... Does 02 work for you? Smack one of those someplace.
  24. I figured before I left, I would share a fun story with y'all. This is something Marcos did. Just some background... When Marcos was about 1 and a half or so, he came up with his own way of dissing you. His phrase was "Football Face." We're not sure where he came up with it, but we found it pretty damned funny. "You a football face!" A few months later Marcos, his Mom Brandi, My Mom, and myself were sitting around the table eating. My Mom asks him "Are you my pumpkin pie?" (I'm using Feck, since I can't use the REAL word he used.) Marcos: "Motherfeckin' Motherfeckin' Pumpkin Pie Face Bitches." All 3 of us: "WHAT?!" You wouldn't He kept combining more phrases and I was like "Where did you LEARN THAT?!" He points up to the light socket. "Motherfeckin' Motherfeckin' Light." Brandi is like "Alright son, that's enough, I think you've gotten that out of your system..." He apparently had, because he stopped it. He also a few months ago created another new phrase of his "Motherbitch". We all use this and MFing MFing Pumpkin Pie Face Bitches in my family. Marcos kind of forgot he made both phrases and doesn't use either, which is a good thing!
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