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ClusterBusters

Heavenly_Blue

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Heavenly_Blue last won the day on February 26 2018

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About Heavenly_Blue

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  1. Heavenly_Blue

    Autoimmune clusters

    Someone comes here, says they haven't been to a doctor, might not even have typical clusters, and your first advice is to take ketamine and cannabis because you theorize it might work? I use ketamine at work for animal euthanasia and surgeries, and have seen vet techs get hooked on the stuff, stealing it from the lab, lying about how much they use. I'll catch them passed out limp in the break room from time to time. I believe anything can have a medical use, but I'm very much into harm reduction, not anti drug at all. If OP came here and said "I have been to a doc, prescribed this, diagnosed with this, none of it works, please help." My reaction would be totally different. Trust me, I hate the establishment more than anyone. And I'm not angry at all, I think you have provided valuable insight and accurate info. My conservatism actually comes from experience, not propaganda. I have seen all manner of substance abuse ruin lives, hallucinogens and cannabis included. I have also seen them save lives.
  2. Heavenly_Blue

    Having pain downplayed

    Right there with you Dylan. Clusters are very isolating. I've never met another clusterhead in person and no one seems to get it. It also sucks that many social events revolve around alcohol. I literally never see my friends once a cluster starts. College years were very hard too in that regard. So many Friday nights spent alone, or out drinking to fit in only to get ramrodded at 12am by a headache. Hang in there!
  3. Heavenly_Blue

    Autoimmune clusters

    I figured out 5ht2a agonists lower tnf alpha by searching on pubmed https://www.ncbi.nlm.nih.gov/pubmed/24098382 There is still not enough evidence to support their use for autoimmune conditions. Yes, I am aware of the risk of infection with humira. Do you know what its like to take a dump with no colon? My friend with chrons does. And trust me, he's not snorting K or dropping acid to treat it. I suggested curcumin earlier, which also is a strong anti inflammatory agent because it has decent therapeutic potential, but little risk for side effects, cognitive or physical. Cluster headaches are not currently characterized as an autoimmune disorder, which OP seems to have given their symptoms. They must be very painful regardless, but likely require a different method of treatment than clusters. Bottom line, a licensed physician should still be the first opinion we consider. They can run expensive tests and have years of experience treating folks with similar symptoms. You just have to find a doctor you trust, just like you need to find a mechanic that you trust to fix your car.
  4. Heavenly_Blue

    Autoimmune clusters

    Ketamine and a cannabis habit might be a bit extreme to treat something with better, psychologically safer alternatives. I know folks with chrons and psoriasis that do really well on humira. Not devoid of its own risks, but everything comes with something undesirable.
  5. Heavenly_Blue

    another one for the smart folks

    If you look at the figures, the difference between control and patients is at most about 10%. It's statistically significant, but impossible to say whether it's pathological. snp s don't always alter the function of a gene / protein in a significant way. I've attached the full PDF of the publication. Rainero_et_al-2010-Headache-_The_Journal_of_Head_and_Face_Pain.pdf
  6. Heavenly_Blue

    Autoimmune clusters

    And yes, I suffer from cluster headaches. I am currently treating mine with some success, hopefully will be out of this cycle within the week.
  7. Heavenly_Blue

    Autoimmune clusters

    If it is an autoimmune problem, modafinil will treat symptoms, but not the cause. If you have significant demyelination, you can have a peculiar eeg and experience seizures. An antiepileptic still won't treat the underlying cause. While you deal with stubborn doctors and await a good prescription, I suggest getting a curcumin supplement to hold you over. Curcumin is the active ingredient in turmeric root and is a potent inhibitor of inflammation. Here is a cheap one. https://www.amazon.com/BulkSupplements-Curcumin-Natural-Turmeric-Extract/dp/B00GHY368G/ref=sr_1_3_a_it?ie=UTF8&qid=1519264486&sr=8-3&keywords=curcumin+bulk+supplements&dpID=41DXUThA78L&preST=_SX300_QL70_&dpSrc=srch I do not work for this company. Also, I suggest getting little gelcaps to put it in. Use a straw to dispense the powder into the caps. https://www.amazon.com/Empty-Gelatin-Capsules-Size-1000/dp/B000ACUJRW/ref=sr_1_1_a_it?ie=UTF8&qid=1519265050&sr=8-1&keywords=gel+caps Good luck!
  8. Heavenly_Blue

    Autoimmune clusters

    Hi missray, Narcolepsy may actually result from autoimmune dysfunction as well. Your immune system has likely attacked the population of neurons that produce the neuropeptide orexin. This peptide helps regulate wakefulness and energy expenditure. Without it, you can experience narcolepsy. Get yourself to a primary care physician ASAP. They can refer you to a specialist who will likely prescribe Humira. This medication is an antibody that targets TNF-a and is very effective at mitigating the symptoms of many autoimmune disorders.
  9. Holy cow, thanks for posting. Great stuff. Regardless of the name or why or how it is happening, we need to address the real problem: Why is this stuff the ONLY great prophylactic for cluster headaches? And also: Can we achieve the same therapeutic effect by some other means? BOL-148 seems to hold promise, but to me, the big hurdle is that none of the research investigates long term changes in the body, which could help us identify another drug target. It would save us the trouble of going through such an ordeal to relieve our pain.
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