Pebblesthecorgi

It will be interesting to hear reports of how this is working for folks. First I will be curious how it is covered by insurance since there is no data on clusters. It will also be interesting from a cost effective standpoint if taking daily or a couple times a month is similar to monthly injections. Be aware this drug will stick around later in the presence of calcium channel blockers like verapamil and prednisone may accelerate metabolism. Experience still gathers on the CGRP class of medications for use in clusters. I suspicion the mechanism of action the drug takes will make a difference. If nothing else is helpful and you have access I vote "hell yeah, give it a try".

Thanks for the video. My observations 1) Sleep is truly affected by clusters (or do cluster affect sleep) 2) We have much to learn about the relationship of sleep stages to precipitating clusters 3) Yes it is scary to sleep during cluster cycle but avoiding sleep makes it worse 4) I am getting very old if that "kid" has 2 post doc degrees

https://www.scientificamerican.com/article/the-power-of-psychedelics/ more positive news in a reputable publication

Take the prednisone all at once as a single dose.it can be hard on the tummy so take something like Prilosec with it. If you usually get hit at night then take it at bedtime. It can be agitating for some folks so the first few nights could be restless. If you get hit during the day take it in the morning. Steroids can be helpful but you can have some mood swings but usually not with your regimen. Verapamil should be spaced out evenly. The magnesium should be ok anytime. The Zoloft is good how you take it and should not hinder the regimen you are on but if you ever try and bust you may need to get off it for a while. Don’t do that unless you have a talk with you provider. Wishing you good results.

The SDSRI’s as a group are pretty unhelpful in treating clusters and serve as “blockers” for individuals choosing to try non conventional therapies. Given that you are already being treated for two other conditions it might be best to discuss with your provider dose adjustments of the lexapro as it seems to be helping.

It truly sucks when you feel at wits end. Before things stabilized for me everything I tried was undisciplined and all over the place. Desperation makes you do things that are nonsensical cause you have to do something. If you are going to go into the neuro looking at conventional cares You might try for a CGRP inhibitor (at the correct dose for clusters) and O2. If you have been treatment resistant to D3 and other modalities its likely verapamil will be a disappointment. Busting is a scary notion but there is a lot to read and familiarize yourself with to reduce a potential unpleasant experience. Seeds would be another thing to consider. Psilocybin is being studied worldwide right now for treatment resistant depression and there is lots of good info about protocols and success. There are counselors trained in using the modalities together. Easier to find would be a ketamine clinic but because these are widely available please take care in selecting a provider so you get the needed post exposure integration. Keep at it and try to keep succinct notes so when you do talk to a provider you are not directed down a path you already have been.

The triptan medications are labeled not for prevention but my experience agrees with yours....taking an oral or long acting version will allow you to get sleep. There is a trade off though...you are likely to start getting rebound headaches from using the triptan regularly. You may also “time shift” the occurrence of the headache. Triptan use can also extend a cycle. Being awaken with a full blown cluster headache is very characteristic of cluster headaches and often how they initially present. Hopefully you can get some O2 to abort and lim it reliance on triptans. Sooner or later you will pay a price for daily use and its not pretty.

Interesting reading about it. Since it only has limited availability it will be harder to get other perspectives. It has been around since 1968 so there must be some track record. A quick englished based literature search wasn’t helpful. Since it is basically a calcium channel blocker with antihistamine properties I would suspicion it falls in the same success profile as most calcium channel blockers. Sounds like you are at a disadvantage because you don’t get to see the same person or someone who actually has meaningful experience treating cluster headaches. Wish the best for you.

It sounds like you would benefit form another opinion regarding your diagnosis. There is no competent physician who would be offended if you sought out an opinion. You have had imaging and have had this for a long time so it's unlikely something like a tumor. Cluster headaches are a diagnosis of exclusion which basically means if the symptoms fit and nothing else is found; you have cluster headaches. Personally I believe if you have the classic symptoms and O2 used properly knocks out an attack: diagnosis is straightforward. The diagnosis and treatment of cluster headaches is pretty unique so a proper diagnosis is appropriate. There is a whole constellation of severe headache called trigeminal autonomic cephalgia (TAC) many of which have a nuance treatment unique to that type of headache. You are in an awkward spot if the O2 advise from @jon019 doesnt' abort an attack I would pursue another opinion.

Verapamil is a difficult drug in any context. As a calcium channel blocker it was originally used as an anti-hypertensive and in some irregular heart rhythms. It was never a very good blood pressure medication and the number of abnormal rhythms it contributed to were worse that those it was intended to treat. When Beta blockers gained popularity in preventing migraines calcium channel blockers were also tried but with less success. Verapamil shows up as the number one phama drug to prevent attacks but that recommendation has surprisingly little evidence to support its use and effectiveness. {I have attached a link to a(nice article at the bottom of this post) My personal experience was taking 1200mg a day and getting so constipated even if it worked I'm not sure it would have been worth it. Over the years one gets a general feel how fellow cluster heads are doing with conventional treatment. This of course is tempered by the reality most folks enjoying successful treatment don't stick around or follow up. I never ever get a YES this stuff works impression. Doses are often too small, the length of use wasnt enough or the side effects not tolerated. My opinion is it is very much a something to try drug but won't be too hopeful. Steroids can be very helpful but those too are often under-dosed , taken long enough or transitioned to something that might give long term relief. All these things are super hard because no doctor who doesn't deal with this curse can appreciate the exquisite, intense and debilitating pain this condition offers. Since for most the attacks are episodic there is never a deliberate treatment plan worked out. In the end its up to the individual to muster all their resources and direct care with an understanding caregiver to deal with this horror. https://americanheadachesociety.org/news/verapamil-cluster-headache/

Another reason it is given as a shot is because many folks (especially older) have trouble absorbing dietary B12 through he gut.

Sounds consistent with cluster headaches more than most other things. The only real inconsistency is when you are getting hit. Classic attacks often awake one from a sleep with the time being fairly consistent. Non steroidal like ibuprofen usually don’t do squat so the relief you perceive might be coincidental. Just because oxygen is difficult to get doesn’t mean its not worth aggressively trying. The exception would be government provided insurance (Medicaid/Medicare) where you are certainly out of luck. It’s worth pursuing welding O2 otherwise. If you can abort a headache with O2 that sort of cinches the diagnosis, very rarely other headache conditions respond to oxygen. In cluster headache folks it is very reliable. In the end you must be the master of your treatment. Research options and partner with your neuro to direct your own care. You bear the burden of this godless condition so taking as much charge as you can is important. Topamax is a very plus minus drug in my experience. Personally the side effects were too much for me to bear. It seems a rare soul who gets enough relief to accept taking it especially if there are other more palatable treatments out there. CHFather is right on in directing you to summary info of what the collective has learned over time. Personally the most frequent abortive are Oxygen, O2, oxygen followed by chug a lug energy drinks and high dose steroids (60-100mg a day for a couple of weeks). Imitrex works but there is a price to pay: rebound headaches and extended cycle. Prevention is a mixed bag. The reports on D3 are encouraging and there is little downside. Quercetin has been recently brought up up very little data, but , little downside. Most of the pharma solutions for prevention verapamil, topamax, depakote etc are more minus than plus, individual responses are not reliable. THe CGRP inhibitors show promise (at correct dose) but for me the jury is still out. Busting seems to work and has a long track record in this community. This is a personal choice and I would advise careful scrutiny before deciding its worth trying. Mushrooms have saved many lives. I am not sure how much additional work up you need. Since you have had this condition a couple of decades the chance of a scan being helpful approaches zero. Clusters are a diagnosis of exclusion and time has excluded most other diagnosis. The cost of an MRI buys a lot of oxygen. Welcome and stay in charge of your life.

Thank you for sharing. That was a well done rational presentation with excellent flow. Please keep us informed of the organizations progress with government. Finland is a great crucible for this because they have a highly educated population, are small enough to effect change and have a progressive medical system. Many thanks

Demand valves can potentially save O2 when you are using high flow. Since the O2 is only supplied when you inhale and not continuously dispenses at whatever rate you select. Batch has given his perspective on this a couple of times. There are demand valves available at times on eBay if you are interested. Personally I don’t like it and prefer the continuous flow however I do use it when I have a small cylinder and want to save volume. Remember breathing technique is as important as flow rate as you want to hyperventilate to get rid of CO2. Thankfully its a rare time these days I get hit thanks to fungi.

Intellectually lazy is as kind as anyone could be when referring to that lazy sh*t PCP. There are many resources out there which physicians refer to to direct treatment. In the USA the most commonly used reference for vetted quick answers is Up-To-Date. That source clearly identifies high flow oxygen for the treatment of cluster headache attacks. It’s not a plus/minus equivocal suggestion, it is a strong endorsement based on evidence. Also there is some confusion between PCP’s and Specialists. Often times (at least in the USA) the intent of a referral to a specialist is to get a proper diagnosis and the PCP does the actual plan implementation. In reality because they can charge or the PCP is not able specialists will manage things. You need to either great a new PCP or lodge a complaint regarding the lack of responsiveness. The other possibility is that you are in a managed care environment and the Doc is an employee who is chastised every time money is spent and they automatically reject anything with potential cost. Most of us cluster heads end up managing our own condition anyway and just need a doctor for a few scripts. Imitrex is not sustainable, oxygen is...shrooms often are miraculous. Hang in there

Thank you chfather. I read about this company. Going to do some more digging. Be interesting to see who,is behind it.

Greetings fellow traveler. Sounds like you have a good plan. D3 is readily accessible and has a low risk vs benefit profile. Busting is a bit more involved but truly worth learning about as an option.

Steroids can provide some relief but generally they need to be in higher doses (60-100mg a day) for a couple of weeks. As stated by others, they can be a bridge until other preventatives kick in or as a way of getting some rest in an otherwise brutal cycle. You’ll hear directions to wean off high doses but that’s mostly to prevent mood swings. If a dose pack works for you,great, but don’t abandon the option if it doesnt work.

It helps with allergic rhinitis. In a cluster headache situation it is “logical” to look for allergic source and the congestion is so much like a sinusitis attack (except the pain is logarithmically worse but only last 30-60 minutes). Sinusitis pain is dull and achy and relatively continuous. The congestion from clusters is thought to be due to vascular dilation triggered by central nervous system changes. Though it seems logical Flonase doesn’t do much to treat “psuedosinusitis” cluster pain.

You are getting the run around. Clearly your neurologist is either disinterested or not competent to take care of cluster headaches. Yes, your primary can prescribe oxygen as your neurologist can. If you are in the US any licensed physician can prescribe. It is possible the O2 home suppliers are difficult to work with and that is why the neurologists office is punting. Its more likely the neurologist office isn't familiar with the process. Depending where you live it might be worth a call to a pulmonoligist office and talk to the nurses (they do the orders anyway) and ask for advice regarding getting O2. Imitrex can be helpful but also can cause rebounds. Using smaller doses of 2 mg from a multi dose vial works great and limits side effects. Prefilled injectors can be broken down to use smaller doses with an insulin syringe. O2 is a godsend and you should figure out how to have available. You might consider the D3 regimen also. C19 has changed the world and medical care is strongly affected. Telemedicine is ideal for established cluster patients but providers are still working out how to use it. In the end you need a provider who listens, is willing to look things up and will prescribe what you need.

From the brief info provided and given there is always more to any story, I would suspect you are having some sort of sinus issue. Fever is not common with clusters although temperature intolerance is pretty common. Its possible to sweat and chill without any core temp changes while in cycle. As mentioned by others its believed the "wonky hypothalamus" is playing a role. Others have provided accurate perspective for you to consider. Other than the unilateral behind the eye pain not much else fits with clusters based on what you report. Hopefully you will find an explanation that is easily treated and never returns.

Poland book is one of several relatable books showing up in this psychedelic ‘rediscovery’. They all sort of follow the same pattern adding the writers unique experience and perspective. The history and fables are all derivative from the early 60s. The value of these stories. In popular press is it reinforces the safety of psychedelics properly used and clearly shows efficacy in managing some very difficult to treat conditions. There is so much valuable info out there to understand the busting option. Most of the studies regard mental health but we have much to learn about these substances from other users. I firmly believe each person exploring a treatment which is illegal must understand what they wish to accomplish, how to use the medicine safely and effectively. Ultimately one must break from societal mores in order to try this treatment

I like being oblivious about such things and do not envy such a duty. The moderators have earned my trust and I trust their judgement. Your work is appreciated.

Topamax has relatively weak evidence regarding effectiveness but it is listed as an option in treatment recommendations. The problem is most can't tolerate side effects particularly fuzzy thinking and lethargy. The kidney stone warning is real. As a general rule there should be better options. This might fit into the category of : "the treatment is worse than the disease". except clusters are the worst

That report was from 2018 and the article referenced was a 2016 study. There has been a fair amount of basic science research paralleling the human studies (anxiety, PTSD, end of life, cluster headaches) over the last decade which built on the experiences from the late 50's through the war on drugs in the early 70"s. Personally I just want relief from the pain and to be able to function without fear of sleep or any other trigger I can imagine. Along my road of self directed treatment and care I finally tried what I considered to be a recreational drug. The experience altered the course of my life in ways I had not anticipated. Articles discussing basic science, other treatments, mechanism of action and safety are really important because they provide clues as to the mechanism of action for things like cluster headaches. The bigger issue is safety. Because psychedelics are a hot topic and because any human studies require pharmacology, physiology and safety data we have lots of good info on safety and the experience of others on how best to ingest these unique substances. For people looking for options and solutions who have no experience with illegal drugs and or psychedelics its important to have some data on risks and benefits. Ego loss is a big deal coming out of the 60's and Tim Leary proselytizing and its interesting to read theory's how it could happen neurochemically.