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ClusterBusters

kika

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Everything posted by kika

  1. Hi, I have been approved to participate in this study, but am having some serious reservations about doing so. I'm not sure what I am hoping to gain from posting here, but a sounding board would be most appreciated. I think my biggest reservation is being unable to use LSA or MM to abort the cycle that is about to start any day now. Being a licensed health care professional, I am not exactly at liberty to disclose that to the MD, but I would like to know if it is an absolute exclusion criteria. I am allowed to use O2 and Zomig to abort, and had little luck with either RC seeds or MM in the winter cycle, so maybe I am making more out of htis than need be. I have never been in a clinical study before and am a bit nervous about having an unknown substance injected into me. If there are side effects, I'm stuck with them until the drug wears off. Any advice, suggestions, or thoughts? Thanks
  2. kika

    recommended doctor list

    Try Dr. Christine Lay at Women's College
  3. kika

    Documentary tonight

    "From Neurons to Nirvana: The Great Medicines" is on the Documentary Channel tonight at 9:00. I really hope they discuss CH!
  4. kika

    Eli Lilly doing study on CH

    I went to the link, but couldn't see if the study included Canadians. Anyone know?
  5. I am wondering if there is, or could be, a section here where current literature on the various treatments could be stored for reference. I would like to be able to present my MD with credible articles on subjects like vitamin D, testosterone, oxygen, etc.... but searching for them here is challenging.
  6. Is anyone aware of any CHers who have found indo to be helpful for our condition? It's one of the few drugs that I have not yet tried as a preventative. My youngest daughter was diagnosed with hemicrania continua and has been on indo for years. I find it odd that the literatures says that A) women arent affected by CH as often as men and clusters are not familial, when my mom and I have them and my daughter has this seemingly related condition.... Our headaches are so similar, yet hers do not respond to RC seeds, mushrooms, triptans or O2. Indo and Red Bull are the mainstays. I live in fear that, one day, her headaches will morph into cluster headaches.
  7. kika

    Spring Ahead Issue

    Mine start a few weeks BEFORE the seasonal daylight patterns change.
  8. kika

    CB on TV

    Wow to the Al Jazeera one!!!! I can't describe the emotions I feel watching others suffer from this. My heart aches with empathy & races with fear at the same time, but I feel so much less alone.
  9. kika

    Busting w RV - not going well

    Sorry, I should have been more clear. I find I Am Shaman much, much better than Trance Plants in that they are more effective at aborting the CHs, don't cause the stomach upset or have the super unpleasant taste that the Trance Plants seeds did last year.
  10. kika

    Busting w RV - not going well

    I switched from Trance Plants to I Am Shaman this year & notice a major difference in the quality & efficacy of the seeds.
  11. In many hospitals on Ontario, IV DHE would be used if the MD knew enough about clusters. When I went in last summer, I requested 02 alone and it was totally effective. I was shocked that the ED staff agreed to it though. Word must, finally, be getting out!
  12. kika

    Does busting help migraines too

    My daughter has tried busting for her hemicraniaa continua and had good results. She is a wuss though, and complains long and loudly about the awful taste.
  13. kika

    How did it all start for you ?

    I got my first CH exactly one year after my husband ended his life. I have had CH episodically for 13 years now and for the first 5-6 years they always started around that time, the last week of June. There were a few years where they showed up in the fall, or late spring, but, given the apparent connection between serotonin and CH, I have always wondered if the reactive depression I developed following my husband's death was the trigger for me. I am happily remarried now and the depression has resolved, so am not sure how much weight to put on that theory. It was interesting to see some other stories here of others for whom extreme stress precipitated their CHs.
  14. I had some O2 tanks delivered to my work in downtown Toronto today and the delivery guy mentioned that he delivers to a few other CHers in the area. I am hoping to connect with someone local A) because a burden shared is a burden halved and I am having very little luck with he RC seeds and was hoping to learn more about growing and using mushrooms. I am very conscious of the need for confidentiality BTW. Thanks
  15. kika

    Best energy drink/shot

    Does anyone know which energy shot has the most caffeine and taurine? Also, I am having trouble finding a store that sells them in bulk. Anyone know of an online source? Thanks!
  16. For some reason I am having no luck with busting this year and I'm wondering if I need to make some changes to my method. I typically use 50 RC seeds, crushed and soaked in about 1 ounce of (cooled) peppermint tea for three hours. In the past this has bought me anywhere from 1-3 weeks of PF time between attacks, but this year I am still getting them daily. Any suggestions? Thanks much
  17. kika

    Busting not working this year :(

    Thanks for replying. Yes, they're a new batch, same vendor as always. I grind them with a mortar and pestle, so no heat. I am not float testing them so will do that for the next bust on Thurs. No psych effects, but bad diarrhea last time ( first time for that). Do you know if it matters whether or not I swallow the crushed seeds vs just drinking the tea that they're brewed in? Thanks again
  18. kika

    O2 toxicity

    I cough as well, but have always chalked it up to the dry throat that the O2 gives me. I keep telling myself to get a humidifier.....
  19. Very cool! Thanks for posting. I so wish I could share this with colleagues in the medical field.
  20. kika

    My O2 Company Has Lost Their Mind

    My &^%$## insurance company is denying me coverage for O2 this year as well for the first time. Had I not found CB and been converted to busting I would be completely screwed because of it. I hear you about wanting to have it just in case. I have 2 E tanks at home ( first year without an M tank at home) that I have not had to use yet because of busting and I keep wondering if I should return them. I have decided to wait until I am waaaaaaaaaaaay out of cycle first though and if it costs $100.00/month for that peace of mind then so be it. However I am episodic, not chronic ( Thank God!).
  21. kika

    Prednisone

    Of all the prevents I've tried prednisone is the only drug that actually worked. However I found the side effects (wild mood swings being the worst of them) bad enough not to use it again. It IS a miracle drug, but as with many drugs there is a price to pay for the relief it brings. Best of luck to you!
  22. kika

    just got the seeds

    FWIW I have found that soaking them in cool peppermint tea for 2 hours makes them more effective than when I used to soak them in wine.
  23. kika

    Where are all the Canadians?

    I can't stress strongly enough that you should not pick your own mushrooms unless you are a mycologist. A small amount of the wrong one and your liver is done. Others cause seizures or kidney failure. I totally get your concerns about growing, but its just not worth the risk of picking the wrong one in my opinion. Have you checked out erowid.org? They are a great resource for all things drug related and may even have specific info on the legalities of growing in ON.
  24. kika

    Studies to support busting for MD

    I ended up taking your advice. Thanks all.
  25. I am seeing my headache MD tomorrow to get my annual script for O2 and am anxious about turning down the Rxs for the usual preventatives now that I bust instead. I imagine he will think it odd that I don't want the usual verap and zomig and feel like I owe him an explanation since I have been seeing him for the past 8 years or so. So my questions are: A) Do most of you tell your doc that you bust? I am especially worried as I am an RN and could lose my licence for using this method Can someone post a link to research that supports it's use? I alluded to doing this at last year's appt, and he seemed quite non plusssed
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