Pebblesthecorgi

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.

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

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

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.

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.

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"

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.

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

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.

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.

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.

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.

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

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

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.

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,

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

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.

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.

A concentrator doesn't really do the trick for aborting cluster headaches. Your script needs to read "100% oxygen at 10-15 lpm via non rebreather mask Use prn to abort cluster headaches for 10-20 minutes". You need the O2 delivered via tanks, not a concentrator. It would be nice if a concentrator worked but it does not except in rare circumstances.

Oral sumatriptan's onset of action is too slow to be helpful in cluster attacks. I would say there is universal agreement about this in the cluster community. It has been used to help prevent an attack and help get a night's sleep but that is "off label" as it is technically not indicated for prevention of headaches. Indomethacin is a very potent NSAID and very hard on the tummy. It can also cause some dysphoria. It is a difficult medication to use long term for those and other reasons. In this context it is used to help establish a diagnosis. You would rather a doctor be honest and say I dunno than pretend to know and prescribe a bunch of useless therapies. Its best to find a physician partner to work with you to try interventions known to work. You really want someone humble, not dogmatic and willing to listen. It may seem like a tall order but remember most folks who go to medical school want to help and relieve suffering. Its only later in their career when crushed by rules, administrators and lawyers that they get jaded and unhelpful.

You need to get a solid diagnosis. You provider is just throwing stuff against the wall to see what sticks. Indomethicin is used to support the diagnosis of hemicranium continum as it does not help clusters as a general rule. O2 is very helpful for folks with classic episodic cluster headaches. A provider reluctant to prescribe in the face of a cluster diagnosis has no clue what they are treating or how to manage cluster headaches. Oral triptans are useless to address cluster headaches. Subq or nasal triptans can be very helpful to alleviate acute pain but you run a risk of rebound headaches. Once you have an accurate diagnosis you can develop a treatment strategy.

I dont take the fish oil, Just D3 and Vik K part. I do use benadryl 50 mg at night. I imagine Batch gets pounded with questions and comments. The summary of his protocol is available as a pinned post. The fish oil can cause some reflux so taking it with some food may help.

Personally I found the fish oil to generate nausea. The volume of pills may be contributing to the nausea as well rather than the specific substance. Try dividing the doses instead of taking all at once to see what you might be sensitive to. I would defer to Batch for final suggestions as this is his baby.

The important thing is psychedelics are being reintroduced to society in a rational manner. Responsible researchers are conducting studies in a though and thoughtful way. Hopefully their results will contribute to the rescheduling of these substances so folks have an opportunity to explore their benefits without fear of prosecution. Having psilocybin or LSD available as a pharmaceutical type medication will help answer questions about dosing, frequency and efficacy. The effects and benefits are so strong it will be hard to argue psychedelics have no medical value.