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ClusterBusters

Pebblesthecorgi

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Pebblesthecorgi last won the day on November 26

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About Pebblesthecorgi

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  1. Pebblesthecorgi

    What if there WAS a CURE?

    Personally I never want to discourage the free exchange of information and ideas because you never know when the next "Flash moment" will appear. We are all aware that when folks get desperate they are vulnerable to any idea or snake oil salesperson. Evidence of this includes offering unsubstantiated surgical procedures at great cost and risk which people consider and actually agree to. In this particular situation I suspicion there may be a mental health issue in play. Whether the initial poster is attention seeking, manipulative or well intentioned their verbose nonsensical communication style speaks to a lost soul. Now that the story is out each person can judge it for themselves, take pity and move on.
  2. Pebblesthecorgi

    What if there WAS a CURE?

    Four hours of typing to say nothing. The parasite theory has been floated before and not well received for obvious reasoms not the least of which it is provable by “modern science”. Being withholding and secretive is the stuff of attention seeking and manipulators. Folks with quality information are generous and forethcoming. Batch set the standard for this and many others have done so to a lesser degree . I am happy you have resolved you CH issue but it seems you have other things to work on.
  3. Pebblesthecorgi

    Sumatriptan Injection Site (Low BF%)

    Yes the backside is ok but as others have suggested abdomen and thigh work. Just pinch the skin to raise it up. Even if you are 3% body fat there is no way you’ll go intramuscular. You should be able to get by with 2 mg injections if you get vials
  4. Pebblesthecorgi

    What if there WAS a CURE?

    Hmm very logical
  5. Pebblesthecorgi

    CBD

    Miss
  6. 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.
  7. 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
  8. 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)
  9. 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.
  10. 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.
  11. Pebblesthecorgi

    Update

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

    Emgality Shot for Episodic Clusters

    Thanks for the report, I hope it continues to work for you
  13. 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.
  14. 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.
  15. 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"
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