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ClusterBusters

Pebblesthecorgi

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Pebblesthecorgi last won the day on November 26 2019

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About Pebblesthecorgi

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  1. Pebblesthecorgi

    Just to put it in perspective

    I have had gout and kidney stones and yes they hurt like all get out. Clusters are in a class of their own. More frequent, unrelenting, narcotics, alcohol and NSAID don't help and there is no understanding of WTF is going on. Unfortunately clusters train you to not look like you are hurting so when something treatable attacks you dont look like you are in pain and delivering care slows
  2. Pebblesthecorgi

    Just to put it in perspective

    Personally I am not really into trying to compare pain or trying to "one up" others in the suffering department but this may help some vindicate themselves or at least give perspective when dealing with insensitive partners, colleagues and other riff raff. https://www.mylondon.news/news/health/nhs-pain-most-painful-conditions-15701223?fbclid=IwAR2zqmTNLdESNWJcLH5nM3yZAz6tqEsXQ0ezoQ6Tm2e03khiXiYeTpe-Lkk
  3. Pebblesthecorgi

    Ketamine test on Dr.John Lilly

    Proselytizing seems to be an ongoing theme with you. I suspicion you are doing this for your own amusement and to be an irritating troll. Most who have feelings on your posts have expressed them. Personally I find them to be inappropriate to the spirit of this forum. Hopefully they will go away but that is not a decision I have to make. At this point not comment would be the best action and I will practice what I preach.
  4. Pebblesthecorgi

    The after effect of Prednisolone

    I hope you achieve some relief. Personally I do not believe a dose pack of prednisolone is genuinely effective in treating active clusters.. Burst doses are helpful for acute inflammation that is readily reversed but the inflammation starting a cluster cascade is more chronic (or at least it seems so). If you choose the steroid route generally one is looking at 60-100 mg/day of a prednisone equivalent for a couple of weeks. Tapering doses in this circumstance are used to avoid agitation from withdrawal. I would regard steroids as a two edged sword. At times they can be life saving but dependence on them can lead to misery. It sounds like you have a shaman type person to guide you and as many of us will attest...it is worth trying anything reasonable and non exploitative. Over the years others have tried this route, unfortunately they met with little success. .
  5. Pebblesthecorgi

    Ketamine test on Dr.John Lilly

    Why do I feel like I do after a Jehovah's Witness or Hari Krishna just knocked?
  6. Pebblesthecorgi

    My chronic CH are the result of a virus

    When suffering the unique, not describable pain that cluster headaches inflict it is natural and normal to grasp for whatever explanation makes sense at the time. We seek to understand lunar cycles, barometric pressures, previous wrongdoings, higher powers, trauma and infectious processes when seeking an explanation. In reality cluster headaches remain elusive in terms of definitive causes and universally effective treatments. Cluster headaches were first described hundreds of years ago before food additives and other entrapments of modern living. Speculation, deduction and personal anecdote dominate discussions among the afflicted. A sequence of biochemical events that result from a virus, parasite or bacteria theoretically may trigger a cascade leading to cluster-like headaches. It is theoretically possible headaches could continued to be triggered after the disease has been treated but this requires a bit of imaginary thinking. Viral encephalopathies are a completely different animal than C dif infections. C dif usually occurs when antibiotics have disturbed the bacterial balance of the gut. Time may tell if there is an infectious disease component to classic cluster headaches but it is more likely the headaches with an identifiable etiology like trauma, infection etc are mimicking clusters. This is an important distinction because in these cases treatment options discussed here are less likely to work. In the end information is good and worth discussing. Who would have thought ulcers would end up being treated as a bacterial disease? Or Lyme disease being a cause of human suffering? Or HPV contributing to certain cancers.
  7. Pebblesthecorgi

    Great news about my O2!

    E tank in car, regulator and mask attached. I reach back to open the tank put on the mask and keep going once I feel the attack in decrescendo
  8. Pebblesthecorgi

    Pins and needles feeling through body

    Suggest sticking with the regimen. Its easy to engage in imaginary thinking about the ill effects of a new treatment. Once you are at steady state with the new substances the feeling will go away as you body adjusts. The least favorable thing you can do is not see a course of treatment through
  9. Pebblesthecorgi

    Great news about my O2!

    I have O2 in my car 24/7 through all seasons. The easiest way is to treat it like a baby and treat it similar. Wrapped in a blanket behind the front seats, on the floor not the rear seat. Secure it enough so it does not roll or slide. You don;t want the tank flying around if you break hard or get hit. There are some rules about securing from the police/DOT but keeping it low in the car on the floorboards and wrapped so it doesnt slide meets the spirit of the law. Remember large numbers of people have lung disease and require constant O2 so its lugged around in large numbers (especially in Florida which is replete with old folks). Having it in your car is no big deal.
  10. Pebblesthecorgi

    Nothing is working headaches getting worse

    Steroid packs (medrol dose packs) generally are not sufficient for cluster headaches. usually you are better served by 60-100 mg of prednisone for 2-3 weeks followed by an optional taper. Of course you have to consider bone mass, underlying diabetes, lung disease or underlying immunocompetence. The bottom line is the typical dose pack is less likely to help someone in cycle vs a more aggressive regimen. Some of the horror stories surrounding steroids like acute vascular necrosis or cataracts are generally independent of dose and rare. Its always a risk benefit trade off.
  11. Pebblesthecorgi

    Nothing is working headaches getting worse

    If you are going to pursue a neurologist for verapamil you might consider a boost dose of steroids to help break the cycle. Verapamil is generally regarded as a preventative rather than a cycle buster. They can suck but they can be effective in getting you some rest and may arrest a cycle
  12. Pebblesthecorgi

    A solution worth trying

    Although the Practice of Manual Medicine is part of the Osteopathic Medicine scope of practice there is not evidence beyond anecdote to support its efficacy (long or short term) in the treatment of cluster headaches. As with all healing disciplines, there are fringe characters who make god-like claims when treating disorders that are poorly understood or have few effective treatment options.
  13. Pebblesthecorgi

    post headaches euphoria

    I have observed a feeling of euphoria after attacks. Not sure if its a sense of accomplishment having survived, relief its over or a biochemical event. I do not believe it is psychosomatic. Nothing wrong with enjoying victory after outlasting the demon.
  14. Pebblesthecorgi

    K Cure for Cluster headache?

    It would be good if your post was clearer regarding what you choose to cut and paste and what you independently write. Properly referencing content gives the originator proper credit and allows the reader to understand what is regurgitated, what is the writer opinion and what is someone else's contribution. Links are posted in the initial post but the text is unclear what is source material and what the originator actual wrote. Ketamine has been suggested and used as a treatment for cluster headaches. No reliable protocols have emerged for treating cluster headaches. The fractured statements in the original post is basically a bunch of gobbly goop intended to entice the reader to click away. The use of ketamine in the treatment of certain psychiatric disorders has been popularized recently and "ketamine clinics" have emerged, some good (and ethical) most I suspicion are not. Since there are no proven protocols for the use of ketamine in treating cluster headaches its use to treat cluster headaches falls into the category of self experimentation and anecdote. I would also suggest that anyone using a psychoactive substance daily (with or without a float tank) has a serious or evolving psychological issue that should be address rather than promoted or admired.
  15. Pebblesthecorgi

    RIP Marie...

    Very sad. The demon wins all others lose. I certainly understand exercising the option but it grieves me to know another person made such a choice. The collateral damage is beyond comprehension particularly her children. Many questions will never be answered. I hope she is at real peace.
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