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ClusterBusters

Pebblesthecorgi

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Pebblesthecorgi last won the day on April 18

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About Pebblesthecorgi

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  1. Pebblesthecorgi

    Cbd oil

    You can ask your doctor about CBD but the reality is there is so little data other than self reporting you will only get an answer based on their observations. Some physicians who practice under the Functional Medicine banner have more experience working with these substances but there is a paucity of traditional scientific literature to support or deter the use of CBD. Part of its popularity is because its relatively novel and widely available. The other reason is you can get it without engaging the medical system and traditional medicine has little to offer the chronic pain person particularly if there is a component of psychic pain
  2. Pebblesthecorgi

    Micro Dosing

    Micro dosing is all the rage these days based on popular books like How to Change your Mind by Pollard. This is being used in the creative crowd and by folks for treatment resistant depression. The most talked about strategy is 1/10th a dose every 3-4 days. Everyone swears by it but data is lacking. Similar situation for cluster prevention. Folks are trying it but there is a paucity of data as DD has pointed out. I am amazed you are feeling the effects of a gram once a month you must either have potent stuff or a susceptible brain. Depending on your supplies you can make a tinture of MM for microdosing. For instance 20 grams dried in 200 cc Everclear, soak for a month or so then you have 0.1 gram per 1 cc.
  3. Pebblesthecorgi

    Looking for advice

    A steroid "dose pack" is generally like pissing in the ocean and is not enough steroid to expect relieve. If he has a cardiac condition that precludes the use of imitrex that condition should be addressed so he has the option of using when in a corner. I know everyone is cautious about triptans and heart issues but the concern seems a bit overblown when you review the cases and the the FDA reports. My point is if his cardiac status is so tenuous to have an absolute contraindication to triptans then there should be room for improvement. The valium may help him cope with the anxiety clusters can bring but will not exacerbate or diminish an attack. O2 will be very important to try...if it aborts his attacks it is much more likely he could respond to busting methods (my opinion) Proper technique and flow are important before discounting it as a treatment. If you want to stick to legal offerings and D3 isn't helping consider asking about CGRP injections (insist on 140 mg/month to start) Though expensive, relatively new to market and has a few unknowns it has shown promise in treating clusterheadaches. The general consensus is GammaCore is pretty useless although I am sure there are some exceptions. The hospital could help if they give him oxygen properly and/or give him imitrex in a monitored setting. Otherwise not much they can do
  4. Pebblesthecorgi

    What is 5-meO-Dalt?

    Shasha Shulgin is/was a sort of god in the psychedelic community. After doing a bunch of discovery for Monsanto, he reintroduced MDMA to the psychiatric community but, like LSD, the recreational community got a hold of it and a bunch of less than rational laws were passed. He developed many molecules that had psychotropic effects and tested them himself and with a small group of psychonauts. He did a lot of work for the DEA and law enforcement but when they turned on him he and his wife, Ann, publishes two books PIHKAL and TIHKAL which are basically cookbooks for a competent organic chemist to reproduce these substances.
  5. Pebblesthecorgi

    What is 5-meO-Dalt?

    research chemical......its nomenclature for molecules used in the lab as reference material or for comparison
  6. Pebblesthecorgi

    What is 5-meO-Dalt?

    Probably not. I am sure a few individuals have it stockpiled for personal use but no legitimate sources seem to have it. It became popular with the recreational crowd and falsely put forward as an aphrodisiac. Getting it became problematic through legitimate sources as they try to keep a low profile. Then China shut down manufacture and supplies dried up. Of course China sees no problem with allowing fentanyl production to flourish.. Although many folks reported success you have to accept the risk of using a novel substance without any long term data on safety. On the other hand the classic psychedelics have a pretty good long term safety record. The devil you know....
  7. I don’t remember if i thanked you. Thank you. I’m actually at the point, because of nearly constant shadows to say F it and I’ll find out how well all me meds play together just like a true alchemist. Just do it and see what happens.

     

    1. Pebblesthecorgi

      Pebblesthecorgi

      I know how it feels to desperately find solutions.  One should be very careful throwing shit against the wall to see what sticks.  Its best to apply a thoughtful measured approach if at all possible.  Best to you

       

    2. Into Light

      Into Light

      Thank you. I've discussed everything with all my doctors.

      I am in uncharted waters; I worked as a reasonably successful 3D computer illustrator selling Big Pharma to specialized ad agencies. I illustrated mechanism of action. I've read plenty of research papers in order sell new drugs visually as still images to Big Pharma via well-funded specialized ad agencies.. A peer-reviewed journal paper with clinical studies would be great. Considering the likely projected RoI, I'll bet that one would require major magic to get funded.

      I pray for the day. In the long run, I'd rather take my usual all-in approach.

    3. Into Light

      Into Light

      I'm also in possession of a 25lpm regulator but it's not enough O2. So off I go to find a medical demand regulator. And on 480mg Verapamil/ day rx. I have oral rizatriptan but it's pretty much a joke. My response to Sumatriptan is vile for days and I've had 2 hours of KIP 10 2 nights in a row, after said triptan.

       

      Mostly, the shadows are they are debilitating year-round.

      So I'm being a bit more aggressive.

  8. Pebblesthecorgi

    OHSU Psilocybin Study?

    If you go to clinicaltrials.gov there is a listing of ongoing approved trials for treating many conditions including clusters. Oregon is not listed. To the best of my knowledge the only ongoing study looking at psilocybin for the treatment of cluster headaches is at Yale. I doubt another center is doing an approved study just because getting the drug would be problematic without approval and tif they used mushrooms I doubt anyone would publish
  9. Pebblesthecorgi

    Describing CH to non-believers

    I appreciate what you are trying to do and have often thought how to communicate the exquisite pain cluster headaches produce. In reality, like a mystic psychedelic experience, it is ineffable, there are no words to describe the experience. There is no empathy except from another fellow clusterhead. The whole thing sucks beyond measure and to me it doesn't matter if anyone understands so I don't bother. Words always fall short. For the persistent soul who presses the issue I direct them to YouTube and Dan's national geographic appearance. The video does more than words could ever convey.
  10. How one handles the topic of personal interest is just that, personal. Why would anyone expect someone to attach their identity to a problem many of us keep a secret? If we are not able or willing to talk freely with those close to us about cluster headaches why in the world would we expect someone in the public eye to become a poster child for the cause? Most of us who have suffered from this condition do not wan tit to define who we are and carry on in spite of the disease burden and do not want to be defined by it. Why would a celebrity do any different. Micheal J Fox is an example of someone who has become a face of Parkinsonism but advocacy also serves his interests and allows him to continue working. I suspicion if he could work and keep it a "secret" he would. Since he could not he leveraged his situation to mutual benefit.
  11. Pebblesthecorgi

    Sumatripton help

    I think the general idea is that hyperventilating reduces CO2 levels which creates an imbalance between CO2 levels and O2 levels which results in respiratory alkalosis. The respiratory alkalosis results is cerebral vasoconstriction which contributes to the desired effect of pain relief. The high O2 levels independently promote central vasoconstriction through a mechanism that is unclear. Our Boston neuro friend had a slide with the putative mechanism of action for O2 but in the end we don't know for sure why. My guess Kudrow was trying things to change Ph or observed a patient who was coincidentally getting O2 .
  12. Pebblesthecorgi

    Sumatripton help

    The average tidal volume of a male is 500 ml. So if you have a 3 Liter bag that would have 6 tidal volumes, even if you have twice the average tidal volume a 3 liter bag would have 3 breaths without refilling. Normal respiratory rates are 12-20 breaths per minute. So if you are breathing at say 15 breaths per minute with a normal 500 ml tidal volume you would use 7500 ml of oxygen per minute. So If you start with full 3 liter reservoir bag and a valve flowing a 6 LPM the bag is capable of being filled every 30 seconds you should not run into an empty bag until near the end of a minute assuming a person could maintain that pace. Running at 10 LPM starting with a full 3 liter bag would be difficult empty the bag. Now of course respiratory rate, lung capacity and length of expiration will play a role. Each individuals physiology and anatomy will influence what flow rates work but for the majority of folks the valves provided usinf a rebreather or optimask set up should work. I just don't want folks to become discouraged if they get a 6-12 lpm valve and not try it. Breathing technique is probably more important than flow rates as blowing off CO2 likely produces the effect we want more than having the O2 running through our arteries.
  13. Pebblesthecorgi

    Sumatripton help

    May be true for you but if you look at the studies providing the evidence for giving O2 therapy evidence of efficacy the flow rates used were 6-12 lpm. There are many variables in the equation so some people will need higher flow rates and volumes but the majority will not.
  14. Pebblesthecorgi

    Sumatripton help

    Just for the record studies done looking at aborting clusters earning Class A evidence for efficacy were all done at flow rates of 6-12 LPM. If these flow rates are not effective for an individual then trying higher rates (masks and technique too) is certainly acceptable but if you doc and O2 provider start you with a regulator that can only do 10 LPM don't despair the chances it will work are pretty good.
  15. Pebblesthecorgi

    Hello - First timer

    Since you have gone into episodic remission it would be a good time to study busting type alternative therapy. As an episodic my observations on GammaCre is similar and tend to agree on the Amovig. Busting clearly helps
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