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ClusterBusters

Pebblesthecorgi

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Pebblesthecorgi last won the day on August 21

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About Pebblesthecorgi

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  1. Pebblesthecorgi

    Question about prednisone

    Prednisone is ok with verapamil and D3. Prednisone is a potent antiinflammatory. Depending on the dose regimen you are on it most likely not stop a cycle but it likely will give short term relief while preventive meds start to work. The D3 regimen is intended to reduce inflammation and will be better tolerated and safer than long term steroid use.
  2. Pebblesthecorgi

    Medicare, Medicaid oxygen for us now

    This is a problem that is nonsensical until you subscribe to Batch's "follow the money theory". I too ascribe to this after a career dealing with nonsensical policies. "when things do not make sense, follow the money. The disallowing of oxygen therapy for treating cluster headaches smacks in the face of well done science. Many new medications, devices and implants have been approved for reimbursement with a relative paucity of evidence compared to oxygen therapy for treating cluster headaches. It is unfair, irrational and inhumane. The cohort of cluster patients needing oxygen is very small and most meds used to treat or prevent attacks are off patent so I do not believe the resistance is coming from industry. It is my belief the problem is government agencies themselves. This is because Oxygen therapy is largely uncovered by government programs and there are millions of oxygen users out there with COPD, respiratory failure and the like. If CMS were to set a precedent by covering clusterheads then they would be on the hook for everyone else on O2 which is a huge spend. Regardless of the reason this denial continues it sucks and I hope the decision makers spend a long time in head with the beast. Then again I would not wish the pain on my worst enemy.
  3. Pebblesthecorgi

    Short break

    I'll be 6 weeks tomorrow. Walker for a day or so then a cane til I lost it (about 2 weeks) I can do stairs pretty well. Been driving since week 2 (left hip automatic car). Still can't ride a motorcycle. Went back o work week 4 post op. Headaches have not been an issue. I'm in about an 8 month remission. I tend to use low dose MM tincture when I get shadows and that works for me. Like all of us the beast acts in erratic, irrational debilitating ways so I am never sure if an intervention helps (MM, D3, steroids, amovig, etc) or if the cycle has run its course. I am reasonably confident #1 O2 properly used is an effective abortive for classic cluster headaches and #2 mushrooms saved my life.
  4. Pebblesthecorgi

    Short break

    Congrats on the hip. Just got mine 2 weeks before you. I believe the anesthetic agents used can help prevent clusters if used properly. Last year I had 4 procedures for a kidney stone and this year the hip. I asked them to use ketamine, propofol and steroids while waking up with high flow O2. Each time I awoke with the clearest head ever. THe Vit D likely had little to do with clotting or not clotting but at supra physiologic doses no one can say for sure. The evidence is largely antedocol. Almost always a surgeon will want you on as few supplements and meds as possible because its impossible to know all the potential interactions. Starting the D now probable wont create an adverse event. Late bleeds are infrequent and if you needed anticoagulation for other reasons you would have restarted by now. Freud is right on about stretching. This is paramount to long term success and becomes critical in the first few months post op. Particular attention should be directed to stretching the illiopsoas muscle and strengthening the glutes. THe general consensus is it can take up to a year to get full function back if you do the rehab work. Stay strong
  5. Pebblesthecorgi

    Exercise / Running while in Cycle

    In the recent past I successfully trained for an Ironman. Understand completely the post training hit, it robs you of the joy of completing an event. I am strongest in bike and running isnt my thing but the outcomes are likely similar. I found taking salt and magnesium at intervals helped prevent post training hits. Generally most of my hits came at night so sleep disturbances had the greatest impact on training. Busting helped too ( I think). I firmly believe it is best to pursue everything you can and fuck the beast. If you alter your life for the beast the beast wins. Never let a bully win.
  6. Pebblesthecorgi

    Just a question

    Stress really keeps the beast at bay. Most of my professional development was extremely stressful. The beast stayed away until once I started to settle down and could enjoy the fruits of my labors.. The beast became vindictive and vengeful making up for lost time. Thats when I sought out help and discovered busting...life changing
  7. Pebblesthecorgi

    Greater Occipital Nerve Block - and doctors are morons

    Sadly your experience is typical of folks with non fatal, longitudinal poorly understood conditions. Most office based physicians are unable to deal with problems that do not fit inside a prescribed box. The best you can hope for is a cooperative physician partner who can support the limited options modern medicine has for dealing with cluster headaches. This would include prescribing O2, the occasional imitrex/steroids/misc Rx, lab tests for Vit D levels and maybe CRGP inhibitors. As most of us know there's little to be gained from an ER visit or a doctors visit when it comes to cluster headaches. Not fair, it sucks and I doubt it will ever improve. This is why groups like this are important.
  8. Pebblesthecorgi

    O2 concentrator?

    O2 concentrators generally are sub optimal. You need the 100% O and flow rates of at least 6-8 liters per minute. Many folks need 10-25 liters per minute. The idea of 100% high flow oxygen is to initiate central vasoconstriction to abort the headache. It seems like a pain but getting O2 bottles can be life changing. There are well put together info posts on using welding O2 if the medical system betrays you.
  9. Pebblesthecorgi

    One man's story

    An interesting read. An unfortunate tale of being truthful. https://www.huffpost.com/entry/cluster-headaches-psychedelic-mushrooms_n_5cf7d9e6e4b067df5ca1bde9?guccounter=1&guce_referrer=aHR0cHM6Ly9uZXdzLmdvb2dsZS5jb20v&guce_referrer_sig=AQAAALeuDkw92Fqkn2a8PStvWDb0pK-wQiafbDXTVnwK3bwbzXKBMEwIMFfrRY15us5RfILtvBf3EVG0pIdA5j5MbFfwm2pTSCphJi3MSYzzdiCtDO_gWZzQo_GULUFtKHiekhKsGxK1KpICv46OvLXRvfiKMMm-G_PZ6WQCyCnNIpXD
  10. Pebblesthecorgi

    oxygen

    I am not aware medicare will cover O2 for cluster headaches. This has been a bone of contention for some time. The CMS ruling ignorantly stated there was too great a risk of respiratory depression giving oxygen if someone retained CO2. The other concern was for eye damage which is only applicable to preterm infants. Such concerns are ridiculous but exist. If you have strait medicaid or medicare there is little change of getting O2 for clusters unless someone is manipulating the diagnostic codes or you have a supplemental policy that is savvy enough to recognize O2 is cheaper than even rationed imitrex. It is a horrible situation that governmental agencies should be ashamed.
  11. Pebblesthecorgi

    Australians beware

    Hmm Is that true in Georgia and Missouri? Sorry could not help myself
  12. Pebblesthecorgi

    Interesting info on legalization

    The measure to decriminalize passed. It is still illegal to use or possess MM. This is a bit problematic because even though psilocybin has impactful positive benefits used in the wrong set and setting or at too young an age can cause significant harm. That harm will create a soundbite which will detract from the positive movement created by organizations like MAPS. So ballot initiatives like this are a mixed blessing.
  13. Pebblesthecorgi

    New here but not new to the evil!

    I agree with CHF. It does not sound like clusters. Getting a proper diagnosis is most important. If your Neuro is indifferent or can't figure it out go to a headache center.
  14. Pebblesthecorgi

    Infusion Treatment Question

    couple of questions: 1) What sort of infusions? 2)How old are you 3) Any history of heart disease? 4) have you ever busted?
  15. Pebblesthecorgi

    Work and CH

    I keep O2 in my car and office at all times. I also have imitrex available at all times if I need a quick abort. Until recently I only got hit at night and rarely encroached on work. Busting has spaced out the cycles considerably but I am rarely less than 5 minutes away from O2 or injection even when I was 2.5 years pf.
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