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ClusterBusters

Pebblesthecorgi

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Everything posted by Pebblesthecorgi

  1. Pebblesthecorgi

    What if there WAS a CURE?

    Hmm very logical
  2. Pebblesthecorgi

    CBD

    Miss
  3. Pebblesthecorgi

    New to Cluster Headaches

    Bummer that you have to investigate treatment options for this terrible condition. Sounds like you have someone who knows how to help you with your care. Please read through the info on the banner click above as it brings a lot of info together. Did the O2 work for you to abort headaches? Proper technique , flow rate and equipment are critical for its success as an abortive. Emgality has a fair amount of success but needs to be given at the higher dose (300 mg) for cluster headaches. Stick with it for at least three months before passing judgement. Oral triptans are ineffective for treating acute attacks while nasal has some success. Subq injections are the best but have a downside of rebounds and may extend a cycle. The D3 regimen has much promise, is safe if used as directed and has no downside. Busting as an option is worth considering but requires research and decision making on your part; it is definitely not for everyone. This site is a great resource and you will find excellent guidance from our members.
  4. Pebblesthecorgi

    Trying to understand my experience

    Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications). You can also concentrate your self education efforts with a laser focus. Do not expect the medical establishment to take charge and treat you. You must direct your own treatment within boundaries you set. Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster headaches. The criteria are pretty straight forward but overlap some other conditions. Many headache conditions respond to imitrex, very few respond to O2 therapy used properly. i am going to try and attach an article from "Up to Date" which is an online "go to" reference for many physicians and mid level providers. It is a peer reviewed, frequently updated, referenced resource designed to help experts and non experts stay abreast of treatment guidelines for many conditions. The attachment are treatment guidelines for cluster headaches and you might consider printing it off and bringing it to a provider or ER visit as you seek a partner to manage cluster headaches. The attachment is a bit large and may not be allowed to be updated. Maybe an administrator can help if it doesn't upload. You can PM me if you want and I'll email it if you wish. @CSA get a diagnosis. uptodateguidlines.pdf
  5. Pebblesthecorgi

    Trying to understand my experience

    In reality there is not much an ER can do for a cluster attack except get in the way of proper treatment. You had a typical experience and the ego of the PA likely got in the way. PA's generally practice under a physicians supervision and they may have protocols that require them to contact a physician if they have to escalate care (for instance use high flow oxygen) because the attending doc may want to be aware someone needs increasingly aggressive care (like heart failure or non responding asthma). The PA probably didnt want to bother the doc and get yelled at. Either that or they are just a jerk. Clusters can be occasional and or one off's. Only the frequently hit or chronics tend to hang around here. I have not had an attack in over a year and never get more than 100 yards from my O2 tanks (home, office, car, parents all have tanks and regulator)
  6. Pebblesthecorgi

    New cocktail

    For clusters the underlying cause(s) remain a mystery. There are a few credible theories and tons of speculation but understanding what exactly predisposes one to clusters and the mechanism of action remains elusive. Any of the treatments that work (with the possible exception of busting) are like a band-aid. They relieve the suffering but don't address the underlying cause. Whether by vascular constriction, reduced inflammation or tempered immune response the intervention is still focused on symptom relief rather than the underlying cause. Investigations such as imaging (CT, MRI), by definition, are to rule out other causes for the pain not to identify the cause of cluster headaches.
  7. Pebblesthecorgi

    New cocktail

    Steroids in high enough doses can quell a cycle but likely not break one. Then you have to deal with the potential side effects of steroids. They can be helpful but like most interventions its a two sided sword. Mobic is just a fancy non steroidal like indomethacin or motrin. It is a COX 2 inhibitor but a doubt very much it will help clusters. It has a role in treating acute post operative pain but not much of a track record in cluster headaches. Was the sumatriptan injection, nasal or oral? Oral is useless in acute attacks. A good test to see if this individual offered oxygen, discussed CGRP meds an has a stepwise plan. Anyone who understands cluster headaches from a treatment perspective should offer O2 up front to abort. If they don't their knowledge is suspect.
  8. Pebblesthecorgi

    Update

    Glad you are back in the saddle. It is good to hear from you. best wishes for taming the beast
  9. Pebblesthecorgi

    Emgality Shot for Episodic Clusters

    Thanks for the report, I hope it continues to work for you
  10. Pebblesthecorgi

    Getting treatment in Scotland

    Remember Flash is a Scotsman and the first person to observe LSD had a positive effect on his cluster headaches. He then went on to report mushrooms seemed to have a similar benefit. Of course this was in the early days of the internet and he was on an interest board where skepticism was high. Eventually Bob Wold (cluster busters founding father) took up the mantel and brought this treatment option closer to the light of day. There is a Scot on the cluster headache facebook group who also has a medical background. She may be able to help you navigate local resources.
  11. Pebblesthecorgi

    Emgality Shot for Episodic Clusters

    No real data or much anecdotal information on this topic. Most of our suspicions about "blocking agents" come from self reports. Most of the substances implicated in blocking are active at the serotonin receptor in the central nervous system or have some psychotropic effect. The CGRP injections do not seem to cross into the brain (blood brain barrier) so unless they can influence metabolism of busting agents peripherally it should be ok to use the two together. We have scant data on CGRP inhibitors especially in areas we are interested. There is no long term safety data. Sometimes it is best to stick with the devil you know.
  12. Pebblesthecorgi

    Females and O2

    Not true. There are episodic "shortages" but the vials are available. Online and retail pharmacies have them in different brands but I suspicion its all made in the same plant in China or India. Fabricated shortages by big pharma are a strategy to raise prices on otherwise inexpensive medications. The other thing shortages do is drive prescriber's toward newer drugs even though the cheap generics work fine. So a jaded, cynical, skeptical soul like myself says "hmmm how do we increase sales of our new CGRP injections? Let's get the providers of current therapies to create an apparent shortage"
  13. Pebblesthecorgi

    Emgality Shot for Episodic Clusters

    These new CRGP drugs may be very helpful in managing clusters. There have been consistent positive reports of success with these drugs. They have to be used in higher doses than for migraine patients and we still don't know if episodics need to take all the time or only when in cycle. There are also "indication limitations" for competitive products like Amovig (indicated for chronic migraines). The biggest concern is these medications are very new and we have zero long term safety data. In contrast D3 seems safe and individual reports are encouraging. Busting has an enormous amount of safety data from the recreational world and individual reports are generally positive. Its all a work in progress and sometimes its better to dance with the devil you know. If you are driving "between the lines" of life then O2 remains the most logical abortive assisted occasionally by imitrex like meds and the CGRP drugs may be the best prescription preventative we have available.
  14. Pebblesthecorgi

    Hi there. Y'all saved my life.

    Thank you for the testimonial. The substances in question help reset the brain to remove the craving. It still takes love and work to avoid the circumstances that enabled the craving. These molecules are not "magic pills" they are only tools to battle demons. Congratulations to you both
  15. Pebblesthecorgi

    Nerve blocker

    nerve blocks are generally hit or miss assuming you have an experienced person placing them. Nerve block success is often operator dependent and even in the best of hands can get variable results. You are either dealing with a sphenoganglion block or an occipital block. Its worth a try but even if they are successful they have to be repeated. Implants are still a work in progress and have transient reports of success. The issue with implants (my opinion) is they require a surgical procedure and although the procedure is minimal it still leads to scarring and potential compounding of the problem. I believe there is one implant approved in Europe, I'm not sure of the application status in the US. As with all interventions you have numerators in search of denominators. I personally would be more inclined towards the CRGP injections (Amovig or Emgality) if confined to conventional therapy.
  16. Pebblesthecorgi

    Cluster headaches related to sinus infections?

    I am glad you are no longer having pain. Though it is unlikely a mucus retention cyst was causing cluster headaches anything is possible. One could develop theories on why cyst removal may be helpful. Another possible consideration is you may be enjoying a “side effect” of the anesthetic agent used for surgery. You might want to get a copy of the anesthesia record to see if propofol, steroids or ketamine were used. Any combination of these agents has the potential to offer relief for cluster headaches.
  17. Pebblesthecorgi

    Does Advil working mean it’s not CH?

    We all have the freedom to choose our life’s course from one degree to another. It’s good to be familiar with options and others experience.
  18. Pebblesthecorgi

    Open letter to major chemical companies (BOL-148)

    There is a lot of banter about Compass. They are seemingly trying to franchise and commodize the market promise of psychedelics. The same thing is happening with ketamine in a more active way. They can't patent psilocybin itself only a unique process to produce it. We are seeing the same crap from insulin manufacturers right now. These are money grubbing opportunistic folks like, but less useful, than toilet paper. The best models we have for psychedelic research and application are from MAPS and organizations like Beckley Foundation. These forward looking organizations are a model for breaking down the barriers for bringing psychedelics to those who would benefit. Proper training from places like the California Institute of Integral Studies help maintain the prudent education of therapists. The whole psychedelic renaissance with derail if the Timothy Leary approach repeats itself. Folks will always be able to access psychedelic drugs if they are motivated but using them safely and properly is essential to effective intervention. Before I crap all over the Compass folks they do have some reputable souls working with them. Bill Richards is an icon on par with Sewell and R Griffiths and he has helped with the "training of therapists" I would be shocked if his integrity were compromised. That doesn't mean the front people aren't rats. It will be interesting to see how things transpire. We all have to remember that even though in our hearts we "know" BOL, LSD, MM, psilocybin, 5-MEO DALT etc "work" to pacify the demon we really don't know for sure which is why studies are so important. I remain amazed the Yale study is still struggling to enroll. The study is a model for anyone doing psychedelic research.
  19. Pebblesthecorgi

    More than 12 mg Imitrex in 24 hours

    You have to be careful with imitrex as it is a potentate vasoconstrictor. Getting it in vials or dividing autoinjector doses can help limit the total dose. Depending on your cardiac health you should tolerate a couple of doses a day. If you have underlying high blood pressure or heart disease caution is strongly advised. Cardiac events have been reported after using Imitrex but in general the risk has been overblown. The larger concern in my opinion is getting rebound headaches which are equally no fun when compared to clusters themselves. You also risk fairly profound gi distress from vasoconstriction if overused. Hopefully you can limit imitrex exposure by reducing doses and using oxygen
  20. Pebblesthecorgi

    Finding the way here

    This is kinda random. I "googled "cluster headaches" from inside the US and went through 6 pages of "hits" without finding clusterbusters or any of the sites that support cluster sufferers. You end up with what I suspect are paid positions and a few articles from the popular press. I think back all those years ago I was desperately seeking assistance and landed here. I'm not sure if I were looking today I'd find this site. Not sure if anything can be done about this. Maybe its better the profile is low given the discussion topics but gee whiz these discussions are truly life saving.
  21. Pebblesthecorgi

    Finding the way here

    @CHfather too much drama in the FB world in my opinion. If you want level headed info this is the only real option
  22. Pebblesthecorgi

    Gammacore

    You might be able to get a unit to try talking to neurologist. I would not discourage trying a unit for free. Personally I found it useless for aborting or preventing. My experience was not unique,
  23. Pebblesthecorgi

    Demand Valve O2

    Should not be a problem in US to get. Of course you need to know the regulator type you need depending on tank size and source ( medical O2 or welding). Medical grade regulators are available on Amazon or eBay or often factory direct
  24. Pebblesthecorgi

    Cycle without the head pain?

    I am wondering if it is possible to be in cycle but not have the pain. I know that is stupid but since the last equinox I have been in a bad place that has all the hallmarks of a cycle but no head pain. I am episodic for a couple of decades. and about 8 years ago started exploring alternative interventions. To my great surprise and relief natural materials gave me almost 3 years pain free and after 6 moths of hell the cycle stopped after intervention. Its goofy but for the last several weeks I feel like a slug, have pseudo shadows (right sided congestion, right temporal pressure but no headache. I take Vit D, benadryl and small doses of fungus twice a week. If I was getting hit at night and sucking O2 I'd accept my symptoms as part of a cycle. Right now I have this vague feeling the demon is rattling its cage wanting to come out and catch up on missed opportunities.
  25. Pebblesthecorgi

    Happy 10th Birthday to our forum!!

    The information here is invaluable and comprehensive. Much appreciation to the moderators and administrators who direct posts to the correct location and maintain civil discourse. Pretty unique given the controversy some topics elicit.
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