Pebblesthecorgi

I will continue to chose my path of spirituality through God's gift of psilocybin.

Similar pattern for me. I have classic episodic clusters for 3 decades. Things start to cycle and you try everything at once to see what sticks. Then of course once you think you have a strategy the usual go to's do not seem effective. This last frustrating cycle found me using a bit more imitrex than I wanted. There are lots of individual reports of rebound, bad side effects and overuse headaches but statistically adverse effects are seen in the minority of individuals. I use Imitex 2mg sg (I get vials) when O2 fails after 20-30 minutes. I have found that taking oral imitrex 50 mg before bed does get me a nights sleep even though its not meant to be a preventative. It does seem to push some of the attacks to waking hours. The anxiety, particularly fear of sleep, is normal. Nothing wrong with the judiciously used anxietylytic. Some use CBD oil or THC or Skullcap but that does not seem to help everyone. Once I got some distance from Imitrex a few nighttime MM caps (low dose) seemed to slay the beast for now. Then again the cycle may have run its course. I am pretty sure the psilocybin did its job but there is no way to know. I've done D3 a long time and remain plus minus on it, recently stopped all together to see if I could detect a change. Have been through high dose steroids, antihistamines, and all the conventional meds. GammaCore was useless for aborting and prevention. Get your mycology effort rolling and stay ahead. If it works for you don't run out.

I had a unit for trial. I am a classic male with clusters. No other headache syndromes. Failed to abort a single attack. Tried to use it as a prophylactic and again useless. I was grateful to try it but remain skeptical it helps folks with classic clusters. The data is very unimpressive and my real world trial was more disappointing.

Use of vials is off most insurance radar. Generally you can get 5 vials (6mg) which can be 3 doses each at a cost well below the autoinjector. Glad you found a better solution. Just be careful not to overuse imitrex as rebounds suck as much as clusters..

It is a notion worth consideration. As always we are chasing "numerators in search of denominators". Specifically as regards clusters. The moniker "Suicide headaches" was attached long before psychotropic meds were handed out like candy. Cluster headache suffers have all life's usual burdens to wrangle while dealing with lost opportunities, wrecked relationships and seething pain. Removing the drugs from the picture, the disease burden of clusters is pretty high...enough to evoke consideration of self destruction. The use of some of these meds may constitute a sort of tipping point but the jury is out on the magnitude of their contribution. In the shooters situation these folks were already predisposed to some type or another of self destructive behavior or demon which led to the intrusion of mental health "care". Unfortunately our current system is ill equipped to provide proper evaluation and treatment of so many mental health issues. Add that to the fact many resist treatment, play with their meds, add other substances of abuse to the mix and have piss poor support systems. You have a recipe for disaster. All they need to do next is practice on a first person shooter game and then go out an reek havoc on peoples lives. If you consider the extremely high proportion of individuals on these meds and the very small number of incidents coupled with confounding factors it would be hard to draw a straight line. That said if you have classic clusters (episodic or chronic) there is no need for these mind pollutants. The treatments that appear to be most effective, D3 regimen, O2 and indoleamine hallucinogens do not have these issues in an otherwise mentally well individual. Don't you owe it to yourself to try what decades of real life experience endorses?.

That would make sense. The system likely has limits of how much total data you can upload. My guess this is a determination made but system constraints or, more likely, the cost of server space. My guess is this is at the admins discretion but may not be individually adjustable. A general widening of limits may be a concern regarding cost etc. In looking at how forums and facebook work it is very inefficient for longitudinal deployment of information. You either have to "pin" info or have it tucked away in the files sections. It would be nice if there was "mandatory reading" of curated material to avoid "asked and answered" repetition. This forum is far superior to something like FB which Edit: After running through this site I must amend some of what I wrote. The necessary info is well collected and pinned in pertinent discussions. Folks just have to have the motivation to read. They should.

That would make sense. The system likely has limits of how much total data you can upload. My guess this is a determination made but system constraints or, more likely, the cost of server space. My guess is this is at the admins discretion but may not be individually adjustable. A general widening of limits may be a concern regarding cost etc. In looking at how forums and facebook work it is very inefficient for longitudinal deployment of information. You either have to "pin" info or have it tucked away in the files sections. It would be nice if there was "mandatory reading" of curated material to avoid "asked and answered" repetition. This forum is far superior to something like FB which is mostly a support group. Clusterbusters is more of an information clearing house.

I think it might be the device. If using an ipad or phone it doesnt seem to work. I am responding from a pc.

In the edit box that I am now typing in you find a paperclip icon in the lower left corner. You can drag a file from your desktop into the box or click choose files and pick from the file explorer window with a double click. The file limit size is 0.23 MB which is pretty compact.

I do. I'm not sure if you would like the whole text or just want to make me aware. I will try and upload what I have. The GammaCore has some favorable data and shows some promise especially in episodics. Still waiting for "real world" impressions. Many new technologies get initial enthusiastic thumbs up only to find subsequent use dampens the enthusiasm. The non invasive nature, portability and potential as a triptan substitute make it attractive. My biggest beef is the planned obsolescence of the unit. In the US it stops working 33 days after activation. For episodic use that is frustrating because you might buy one to have handy use it a few times and go out of cycle and 30 days later it is garbage. external stim.pdf

Electrical stimulation is vastly over rated. (this is true even in non cluster headache conditions) Batch is right on. When you look at the data for implantable simulators and external simulators it is practically unimpressive. Basically it works partially some of the time. With implantable you run the risk of a complication that leads to not reversible changes and with the external the subscription model makes it financially unsustainable without insurance subsidy. All for partial relief some of the time. When you ask the "general population" of users there are very few long term happy campers. Better to explore options with better preventative track records like D3 or psychedelics. External stim (gamma core) may play a "special teams" help for thinks like unavoidable air travel but even then the 33 day model planned obsolescence model they employ makes it a bit unpractical.

No data. It's a little different molecule. Not something readily available and probably not the best to self administer. Most folks experience is with psilocybin or LSA

Completely uninformed, lazy doctor. If she is a neurologist I would question integrity, if a general doc stuck in the past...maybe a "mentor" told her this and she accepted it. Just ask any doctor to review the info in UP-TO-DATE, a clinical reference of high integrity. It's pretty clear O2 is number one abortive choice for clusters

You know if : 1) Oxygen properly used never aborts 2) Imitrex, properly used never aborts 3) Steroids properly used never aborts It is highly probable you do not have cluster headaches

If you have a solid diagnosis I would advise finding a open minded decent family doc or internist. Develop your own treatment plan based on data found here and present it to him or her and have them support the plan. Such a plan should include D3 (listed in our archives), availability of home high flow O2 with non re breather mask, continued use of benadryl (with perhaps higher dose). You can decide for yourself regarding other things you need a physician to prescribe (verapamil, steroids, triptans) most of us here have tried prescription stuff and try to avoid because the efficacy is limited and side effects suck. Depending on your comfort level and severity of disease you may also explore alternative options. Bob's Big Book is an excellent resource to develop a personal plan. The main point is, your doc does not need to know much about clusters but must have the capacity to listen, be reasonable and willing to work your plan. In reality finding such a person should not be that hard, most docs do want to make a difference in peoples lives.

Your point is well taken. Those who cruise these sites regularly are probably the worst of the worst or professional patients. Ideas bounce around and back and forth but it remains anecdotal. We need decent studies so we don't end up with a little bit here and a little bit there. Treatments need a proper protocol to evaluate efficacy. The psilocybin study will go a long way in evaluating that form of treatment either validating it or dismissing it. I guess what I am saying is it would be great ot get a world perspective on things but in the end we need a cohesive way to evaluate the effectiveness of treatments. This includes proper diagnosis and properly applied interventions.

MAPS notes Just finished attending the last lecture of the Multidisciplinary Association of Psychedelic Studies (MAPS). Coined Psychedelic Studies 2017 this was the largest (to date) gathering of professionals, academics, lay therapists and those with a life long interest in the benefits of psychedelic modalities. There were researchers, clinicians, advocates and enthusiasts sharing data, experience and advice. Among those at this robust and vigorous event was Bob Wold representing Cluster Busters at an informational table and Brendan Burns sharing his personal story and knowledge. Emmanuelle Schindler presented the clinical study design and rationale setting the stage for presenting solid data at future meetings. Our cause was well represented. Certainly our situation is a bit one off from the mainstream but it is important we don't let the avant garde of this exciting movement forget our interest as psychedelics rapidly reenter current therapeutic options. I attended many of the talks and wish to provide a high level summary of some of the talks that may be of interest to those considering alternative cluster treatments. The videos of specific presentations are going to be available on You Tube and searching MAPS with the presenters name should guide you to the source. The program should be on the MAPS sight. No claims are made of unerring accuracy, lack of bias in interpretation or completeness. My best is all I have to offer. Stanislav Grof opened the lectures and included his work on breathing techniques to produce a psychedelic state. He is a well loved researcher in LSD psychotherapy prior to making LSD illegal and developed these techniques in the void left by draconian legislation. Many workshops have evolved based on his techniques and components are reminiscent of what Batch has suggested. There was much about herbal roots from around the world I don't want to spell but since we have limited input on things other than LSD and psilocybin I leave their usefulness to inevitable discussions. MDMA got lots of attention but no data for us. Sounds like great stuff for the right application. These will eventually crop up in one form or another. I will also reserve judgement on the large number of folks bemoaning their migraine experiences to Bob. The guy suggesting a stem cell transplant fixed his clusters will go on the shelf for now, Heaven points for Bob. Psilocybin was discussed in a significant number of presentations. The context was in death and dying, addiction, PTSD and pharmacology but the message was loud, clear and repeatable. The use of psilocybin in these context is safe, effective and long lasting. This included measures of anxiety, mystical experiences, squashing suicidal ideation and overall improvement in sense of self. Trait measures of forgiveness, life meaning and faith maturity are amplified in a sustained way. Psilocybin was given in a safe set and setting and included psychotherapy and counseling. Look up work at Johns Hopkins and NYU. Neuroimaging studies report pretty consistent findings. There is the well known interconnection throughout the brain on psilocybin. Decreased blood flow is seen in the Cingular nucleus. This results in slowing or blocking the brains inhibition of data inflow allowing for freer communication. There is desynchronization of the posterior Cingular nucleus and decreased inhibition. Basically psilocybin is believed to inhibit the inhibitor and allow free flow of information. Interestingly the brains Default Mode Network (DMN) decreases with immediate dosing but in 24 hours and then increases in a sustained way for a long time. Similar changes are seen in experienced 1000+ hour meditators. Meditation showed similar findings to a dose of psilocybin 25 mg / 70 kg. The posterior hypothalamus is activated by psilocybin and this activity can be affected by hormones, genetics and inflammation. UW- Madison presented participants in a pharmacokinetic study looking at dose relationships and physiologic safety. It was a Phase I trial to establish safety parameters. It was very safe at all doses. There were 3 dose regimens given a month apart and dosing was based on body weight. 0.3-0.6 mg/kg body weight. So if you weigh 154 lbs your largest dose was 42 mg. That is equal to 6.7-8.4 grams dried shrooms. (4 grams dried is equal to 20-25 mg psilocybin). No adverse physiological events and the participants report sedate to wild experiences. They sought each other out after the study and remain bonded. The question of dosing by body weight or standardized dosing was addressed. Study's showed no difference in outcome measures related to body weight. The experiences where all over the place irrespective of dose and body weight. Seems you get what you need? Looking at bad experiences on meds (bad trip) demonstrated guidance through the event in a safe set and setting was effective. Most related the experience to be profound even if seemed negative to sitters while occurring. Good experiences and bad experiences were latter judged helpful. Look up the Zendo project on psychedelic harm reduction and study the tenants of safe place, talk through not down, sitting not guiding and difficult is not bad. The biggest impression was all the 70-80+ year old wandering around with extensive experience in psilocybin and LSD use. Of course these represent folks who see a profound benefit of these substances in their lives. They are healthy, intelligent productive folks with mind blowing exposure to these substances. A pretty good real life testament to safety.

Immediate suppression for high priority events is problematic because most require a bit of conventional medication and all the yucky side effects. Prednisone oral with taper is at the top of my list 60-100 mg a day for 10-14 days then taper down by 10mg every 3 days til done. Mix in some Verapamil up to 1200 mg a day until 10-14 day pain free and pray (and I mean Pray) for you bowels to move. Energy drinks (caffeine) may help. Antihistamines Benadryl 50-125 mg at night and Claritin 20-40 mg during the day. Amerge (nartriptan) is a long acting version of imitrex but need an Rx but you can use daily for the duration of your trip. May get rebounds after. This situation sucks and I have been there. The advice presupposes no medical problems and access to medical care. Best to you

OK so I am new to Dr Cluster Cutter. Being a creature of the Apostle Thomas, I read the papers the good Dr posted to bolster his claims of surgical success in treating the cervical vascular tree of cluster sufferers while disparaging his Boston critic. Of the papers listed one is a very small case report series with less than 6 months follow up. Basically this is the type of "show and tell" paper most experts hate to see. There is no reported evaluation, no description of prior treatments and no objective documentation of long term success. A gratuitous failure is reported to seem genuine. Most importantly there is no follow up paper reporting or describing the subsequent cohort of patients who benefited from this intervention. The other papers listed are a repeated rehash of the same concepts. Putting sheepskin on theory presenting ideas and concepts as facts and forgone conclusions. This type of appearance in peer review type publications is "padding the resume" and complete fluff. This smacks of the worst medicine has to offer. Physicians and surgeons who develop new techniques and have a modicum of ethics refine the techniques, continuously report the techniques outcomes with data and teach the techniques. Peers who review these techniques get fired up and want to learn them and independently validate the findings. With all the folks who suffer these headaches (within the spectrum he alleges successful outcomes) throughout the world there is no way other surgeons would not become curious and investigate this as a possible effective treatment. Believe it or not most physicians and surgeons want to make a difference and want people to get better. Most medical communities have internal checks and balances to prevent individuals doing ineffective, unproven, exploitative procedures. Doctors who do are often found only in independently owned free standing clinics and surgical centers where they can escape the scrutiny of medical staff review and ethic committees. Surgery is an irreversible act. Once steel divides skin and vessels are divided its pretty hard to undo. So be careful if you consent to having a novel procedure because it may make things worse or senselessly drain resources from you and your family. This is also a good example of why controlled studies with long term follow up are vital. Here and on one of the cluster oriented FB pages there has been discussions of medications like ketamine and propofol being beneficial for treating clusters. Both these medications are commonly used in anesthesia. Suppose you have a novel surgery for your CH. You get IV meds for anesthesia, a cut on your neck, irreversible vascular changes with a significant wallet biopsy and voila no headache. You tell your surgeon he or she walks and water and fly home. Three months later the demon returns, your bank account is dry and the surgeon reports your case as a win. Is it possible the anesthetic agent actually provided some relief? Does this sound like some of the medical treatments we take...works for a while and then you need another dose? How do you know? No way to know that is one reason studies are important and why CB has directed resources at doing important studies. Please use care, inform yourself with independent information and don't be exploited. '

Are you part of a study in the US or in Europe where it is available outside of study protocols?

Hope the grandchild is healthy. I don't think it would be good to attend a birth tripping. My the mind wanders....

Good luck. If possible get yourself some O2 to handle initial breakthroughs and look at the list of "blocking" agents to be sure potential interference is minimized. The list is a bit inclusive and strictly observational but worth reviewing. The MM approach does work for classic cluster folks but can take several exposures to become effective. Many report using lower doses does the trick so you don't necessarily have to dissociate.

I don't know if you have access to the whole study but when you look at the mechanism of action I don't believe this would help clusters based on our present theoretical framework. The population studied were more classic headaches (tension, migraine) and the results were ok but not great. Being a meta analysis it has some validity but applying to Clusters (which are not a primary headache disorder) would be a reach. Not a lot of side effects (or so they say) so giving it a try might be a consideration but it would be a shot in the dark.

Good advice and I would reinforce a couple of thoughts. Might try a more moderate dose 80-100 mg for a longer period of time...1-2 weeks then a very slow taper over 2-3 weeks. You can ask about increasing the verapamil (up to 1200 mg a day) then taper when pain free for a month or so. The verapamil can have some cardiac effects and higher doses need to be monitored. Steroids can be a godsend and safe if used judiciously but there are always potenial side effects. A slow taper is the most effective way to prevent and manage the mood stuff.

I really don't find these reports glowingly positive. They are more like show and tell stories - individual case reports. Even if they work for a headache it is a pretty invasive way that has a limit on how much steroid you want to put in a single area. Our local pain folks are soaking the area with local anesthetics but the cost is so high it becomes impractical with mediocre results. Like you related there can be some irreversible consequences. The implantable nerve simulator also is intriguing but again it is largely aborting attacks but at least it is readily available (being an implant - not treatment option yet) and can be turned on and off repeatedly without causing tissue damage.