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ClusterBusters

Pebblesthecorgi

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  1. Pebblesthecorgi

    Questions for indomethacin and sumitriptan patients

    Oral sumatriptan's onset of action is too slow to be helpful in cluster attacks. I would say there is universal agreement about this in the cluster community. It has been used to help prevent an attack and help get a night's sleep but that is "off label" as it is technically not indicated for prevention of headaches. Indomethacin is a very potent NSAID and very hard on the tummy. It can also cause some dysphoria. It is a difficult medication to use long term for those and other reasons. In this context it is used to help establish a diagnosis. You would rather a doctor be honest and say I dunno than pretend to know and prescribe a bunch of useless therapies. Its best to find a physician partner to work with you to try interventions known to work. You really want someone humble, not dogmatic and willing to listen. It may seem like a tall order but remember most folks who go to medical school want to help and relieve suffering. Its only later in their career when crushed by rules, administrators and lawyers that they get jaded and unhelpful.
  2. Pebblesthecorgi

    Questions for indomethacin and sumitriptan patients

    You need to get a solid diagnosis. You provider is just throwing stuff against the wall to see what sticks. Indomethicin is used to support the diagnosis of hemicranium continum as it does not help clusters as a general rule. O2 is very helpful for folks with classic episodic cluster headaches. A provider reluctant to prescribe in the face of a cluster diagnosis has no clue what they are treating or how to manage cluster headaches. Oral triptans are useless to address cluster headaches. Subq or nasal triptans can be very helpful to alleviate acute pain but you run a risk of rebound headaches. Once you have an accurate diagnosis you can develop a treatment strategy.
  3. Pebblesthecorgi

    Nausea with D3 Regimen & Cofactors

    I dont take the fish oil, Just D3 and Vik K part. I do use benadryl 50 mg at night. I imagine Batch gets pounded with questions and comments. The summary of his protocol is available as a pinned post. The fish oil can cause some reflux so taking it with some food may help.
  4. Pebblesthecorgi

    Nausea with D3 Regimen & Cofactors

    Personally I found the fish oil to generate nausea. The volume of pills may be contributing to the nausea as well rather than the specific substance. Try dividing the doses instead of taking all at once to see what you might be sensitive to. I would defer to Batch for final suggestions as this is his baby.
  5. Pebblesthecorgi

    60 minutes

    The important thing is psychedelics are being reintroduced to society in a rational manner. Responsible researchers are conducting studies in a though and thoughtful way. Hopefully their results will contribute to the rescheduling of these substances so folks have an opportunity to explore their benefits without fear of prosecution. Having psilocybin or LSD available as a pharmaceutical type medication will help answer questions about dosing, frequency and efficacy. The effects and benefits are so strong it will be hard to argue psychedelics have no medical value.
  6. Pebblesthecorgi

    Chronic Cluster a Year OR Longer?

    The definition of episodic or chronic is just that, a definition. Though it matters to the individual because of the pain, anguish and disability are real and life altering, a definition is used to characterize the condition for medical bookkeeping. Personally I suspicion that this is a spectrum condition. What I mean by that is all the TAC's are different presentations of a similar mechanism. Whatever is causing the inflammation, vasodilation and sympathetic symptoms (drooping eye, watering pupil changes) probably has a similar genesis with a subtly different manifestation. What speaks against this is the variations in treatment response. This includes different responses to O2, triptans, psychedelics, analgesic and surgery. One would think that if there was a common pathway we would see similar responses to treatment across diagnosis'. Instead reports seem to indicate though there is some cross over in treatment response (triptans seem to work for chronic, episodic, and other TAC's they do not offer much relief in trigeminal neuralgia) and there is little cross over with other interventions. (O2 and psychedelics as a treatment option seem relatively confined to treating classic cluster headaches. So we may speculate for a cogent answer, the reality is we know so little about this scourge and this leads to lots of speculation and exploitation. The pain these conditions inflict is so intense you are willing to subject yourself to just about anything damn the risk. Having said that, I always wonder why many resist trying alternative therapies like the classic psychedelics. Here is an intervention that seems effective in folks with cluster headaches and supported by an abundance of evidence regarding the safe use of these modalities. Collectively we have been misinformed by our regulators/government/medical providers that these substances are dangerous and have no medical applications. If the evidence of safety and efficacy regarding psychedelics were not so robust we would not be living in a time of psychedelic Renaissance @elrik138 your situation is especially challenging. When you have multicentric head pain syndromes the treatment arc gets scattered and it has the potential to have interference from multiple interventions. Surgery, nerve blocks, injections and infusions may not have an additive effect and may work contrary to each other. There is no way a health care provider would understand all the potential issues because this is an uncommon condition and few have the time or interest to methodically sort it out. Heck we dont even understand what is causing these or how the interventions work. If you have classic clusters and respond to O2 as an abortive familiarize yourself with psychedelic options and the safe use of the busting option. It may sound trite or insincere but these molecules can change your life but proper use requires self education, proper preparation, personal responsibility and an understanding of set and setting. We have yet to produce an effective treatment tree for cluster headaches alone and when you add in a couple of other diagnosis there is no way to coordinate treatment unless you do it yourself. Dont count of your doctor cause there is no way they have time or interest. You must be your own advocate.
  7. Pebblesthecorgi

    The more the merrier

    More discussion in the popular press about one of the more effective treatments for cluster headaches. Although treating cluster headaches is not the focus of the topic every bit of popular press on the potential benefits of properly used psychedelics helps to destigmatize their use and may make others open to exploring legitimate (though illegal) use. https://www.cbsnews.com/news/psilocybin-active-agent-in-magic-mushrooms-could-treat-addiction-depression-and-anxiety-60-minutes-2019-10-10/
  8. Pebblesthecorgi

    Boost Oxygen on Shark Tank

    There is not enough O2 either by concentration or volume to be very helpful. I tried it a couple of times to see if it would work for me. I respond to O2 in traditional delivery for clusters very well. The O2 in boost was not noticeable and did not respond better than hyperventilation alone and was inferior (my individual impression) to a 5 hour energy. Its marketed overtly for altitude issues and covertly for hangover treatment. It might be good for one of the two. I suspect any effect would be short lived and largely placebo.
  9. Pebblesthecorgi

    Ketamine Infusion

    The role of ketamine is still pretty ill defined. I do not believe there is an established role or treatment protocol for ketamine. Most of the treatment options are case reports and individual reports. Because ketamine is “legal” and available it should be easier to study but because it can be a profit center infusion clinics are popping up with their own protocols mostly to treat depression and anxiety. Cluster headaches are largely a side business. Until there is a study (s) to demonstrate effectiveness the intervention is hit or miss ( experimental)
  10. https://www.sciencealert.com/scientists-made-a-bacterium-that-poops-out-psilocybin
  11. Pebblesthecorgi

    Do Cluster cause Physical Damage?

    Clusters do not cause any known physical damage. Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations. Mental health challenges can cause legitimate physical problems. The other issue becomes imaginary thinking. We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc. its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.
  12. Pebblesthecorgi

    Surgery while taking Verapamil

    It’s ok to be on for surgery. You do need to let the anesthesiologist know to avoid adverse interactions, most common being heart rhythm disturbances. They can manage you well. Let them know about the clusters, they may give you some ketamine. Request to wake up with high flow O running. Best to you.
  13. Pebblesthecorgi

    New, English and Confused .

    What you need to do is talk to your doctor and see if she\he will code you as chronic migraines. The CGRP class drugs seem to have better coverage for that diagnosis. The other option is to talk to HR and see what appeals process s available. Often BCBS is an administrator for employers and the pharmacy benefits are actually dictated by the employers group. With persistence you should be able to find out the circumstances the med will be covered (Amovig is an option) and then have you doc massage the diagnosis to get you approved. Nonsensical, yes - Manipulative, yes - sucky, yes but in the end you have to play the game even if you dont know the rules.
  14. Pebblesthecorgi

    Energy drinks

    energy drinks can be helpful. Those energy shots can help some and are easier to "chug" Actually anything that promotes vasoconstriction can help (like caffeine). Taurine also has some benefit. He can lessen the side effects of the sumatriptalin by getting vials or dividing doses (search for method). Usually 0.2 mg is enough and you don't get side effects as readily. Remember suma is a two edged sword and rebound headaches are not uncommon. O2 first as an abortive, suma as a last resort. Prevention with D3 is worth exploring. Read the New Users-Read here first at the header. Best of luck
  15. Pebblesthecorgi

    Females and O2

    Sounds like made up information to me. Most of studies with O2 have men but that's because of diagnosis bias. Physiologically male and female brains function the same. Its the manifestations of that physiology that creates the "Mars/Venus" effect (tongue in cheek, wink). Even if "60%" was true its still worth trying properly. Ask you doctor "If I have cancer and had a 60 % chance of responding to therapy would you offer it?" O2 is inexpensive and effective for aborting clusters and every cluster head deserves a chance to try it.
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