Pebblesthecorgi

Its a very interesting process. Not for those who enjoy instant gratification. Those who have hung in there for many years deserve oodles of respect and credit. Definitely have to play the long game. There is some optimism some traction on O2 with CMS. Time will tell but with Washington in tail chasing dysfunction the cluster world may score a win.

I think if nerve blocks worked reliably there would be more published. Blocks are well compensated procedures. There little data to support and even if there was the injection is very operator dependent. Also its hard to imagine someone with enough cluster patients to claim "great results". Not to be negative but......

Get down your technique. It matters. Generally speaking if you are not quieting you head by 10-15 minutes it's probably time to quit. 40 minutes is in the range of an unchecked cluster so you probably ran the course with or without O2

Rebounds are pretty common with this category of Med. the whole triptan family is notorious for rebounds and extending cycles. Indeed they are a necessary evil but investigate oxygen and alternatives here. Read Bobs summary of the condition and treatment options then bring the questions.

Yup but I have heard there is a long lag time between start and harvest. There are many primers for first time growers out there. Do a search for BRF (brown rice flour ) and roger rabbit that will get you started. Info here too I believe. Sourcing your own meds is the best way to go IMHO because you know everything about what you would be taking. So if you have the space, privacy and time its the best way to go for such alternatives.

Good advice from Dallas Danny. I would add the getting O2 is very important if you don't have it already. It's service to purposes 1 you have a no side effect way of aborting the headaches and secondly if it doesn't work I would be a little suspicious of the diagnosis. My personal experience with Verapamil is similar to Hollywood Dan and about as close to delivering the baby as I ever want to get. personally him a little dubious about verapamil blocking. the biggest problem you would run into is if busting does not work you don't know if the verapamil blocked. just didn't apply to your situation. if you're not on the D3 regimen that's worth doing. Remember besides busting with MM there are seeds, DALT and other products in the MM class. just remember to be systematic and record what you have done that works and what you have done that doesn't work so when things get tough you have something to refer to and are not reinventing the wheel.

A lot of good advice for you. Everything you are doing and have prescriptions for is for aborting the headaches except the verapamil. The D3 regimen should help prevent future headaches. You might consider looking at DALT and/or low dose MM as a potential preventative. Another easy thing is antihistamines (benadryl 25-50mg) which some find helpful. Steroids used as you describe are almost always ok with few side effects, chronic or frequent use leads to troubles. Verapamil is a mixed bag. If you have predictable cycles you could start before you anticipate a return. If your cycles are far and few between its hard to stay on but you never know when the hit is coming and then you have to use other busting strategies. Your dose is pretty modest. If it works as an preventative I personally would stay on it and avoid alternative off the grid meds

Its pretty well established cluster headache folks don't respond to manipulation. If they do it usually indicates they had an incorrect diagnosis or coincidental.

it's not a matter of believe. It's actually fact and well established in the medical literature. Ask him to look up cluster headache treatment in up-to-date. Up-to-date is a credible medical reference that many physicians use to keep apprised of the latest and most evidence based treatments. The use of oxygen to treat cluster headaches is a first-line treatment recommendation in pretty much every correctable source. Printing off the information and bringing it to him to discuss may also be influential. Be sure to approach him or her in and even handed manner and not as a know it all. Unfortunately many physicians will to new out and not be interested in helping if they perceive attitude. It's not right but that's the way it is. You are on solid ground requesting oxygen.

Agree the O2 is a waste if you dont have the proper flow rate, proper mask set up (or Bathes red neck set up) and the correct breathing technique. Don't give up until you can do it properly. Also are you using imitrex oral or injection. It is very unusual not to get a response from subq imitrex in most of these headache syndromes. D3 can take a while and make sure your are using all of the components especially at the introduction

Best wishes on your birthday. You do awesome work.

He gave you good motivation. Every word true.

Good luck with the smoking cessation. It is the second hardest thing you will ever do. I trust you are getting your B12 levels checked and supplemented. People with stomach resections are at very high risk of a B12 deficiency and often need supplements (a shot) Other micronutrients often need replacing as well.

Not sure its an allergy but a sensitivity. I know it sounds like splitting hairs but the word allergy gets overused and people sometimes put themselves in a bad spot calling adverse reactions an allergy. I do agree there is a metabolic issue in CH that has yet to be identified. Kinda like celiac disease of the brain.

I don't want to be negative, judgmental or a cheer leader but of course there's a BUT. Assuming you are getting the correct molecule and the correct dose the "trip" is largely dependent on set and setting. THere is a brief treatise written by Timothy Leary (yes the shmuck who did as much good as bad by taking LSD to the masses) named the Tibetian Book of the Dead that discusses creating the right situation to take psychedelics. It is hard to create this when you are getting pounded with unrelenting pain but you can work on improving the experience. If you are properly prepared and have a good sitter both SD and MM can be a positive experience from a "spiritual" standpoint. If you use alternatives in a bad mood, surrounded by negative things and sont have a sitter to steer you away from negative things the whole experience sucks big time.

Sorry you continue to struggle. Are you making a plan and trying to stick to it? Sometimes when desperate its common to do a little of this and a little of that in hopes of getting relief. As far as alternatives go (LSD, MM, LSA) those reporting success tend to do 3-5 doses spaced 5-7 days apart and if a good reult is obtained start a maintenance as makes sense. For some small doses weekly and other only bust a couple of times a year. Get an effective bust and wean down the dose to minimize side effects. THe DALT crowd sems to do 15-20 mg every 5 days (remember this a a low dose and should have little to no side effects). If you haven't, get started on the D3 regimen that third dose is a consideration too. The problem as I see it with LSD is the source. It is darn hard to tell if you are getting the genuine article or something adulterated with some undesirable crap. Few have the chemistry experience and proper techniques to manufacture. This means you are at the mercy of a sketchy supplier well removed from the source most of the time. At least with MM you have some say over what you are getting if you grow your own. If your cycle is really bad and won't break, a course of high dose steroids is worth consideration. Properly dosed Verapamil can help but there are side effects in many folks. As always have O2 around for an abortive. Stay strong and keep us posted.

Looking forward to hearing the follow up. Positive thoughts and prayers.

I think the same question can be extended to why is alcohol a trigger in cycle and not out of cycle. In fact why are in cycle triggers not triggers out of cycle. It speaks to our lack of understanding what is actually going on. Somewhere deep inside our neurophysiology something short circuits or gets out of whack. Whether this occurs due to an anatomic aberration, neurophysiologic hiccup or genetically passed on screwed up programming is yet to be determined. This is especially true for episodics who generally follow a predictable pattern. Something in the hypothalamus or nerve and vascular plexuses leading to it become susceptible to the trigger. Folks would likely still get clusters without the trigger but probably not as frequently. There are a lot of different factors that can contribute to the clusters it will be interesting to see if in our lifetimes a single mechanism of action is proven. The great work folks on this board do with presenting case studies of what works and what doesnt, reporting reliable triggers and treatments will provide fuel for researchers who can test hypotheses' and get a consensus on WTF is going on in our heads.

I've been following this concept for a while. My personal opinion, for what it is worth, Is that there is merit. I have had personal positive results. Now cetainly my positive observation are clouded by many confounding factors. I currently use DALT every 5-7 days, toss in some low dose mm sporadically when I have 6 hours to spare, D3, verapamil and a beta blocker. The verapamil and beta blocker are ostensibly for hypertension but I chose them for my blood pressure hoping they would do double duty. At night I take 75-100 mg of benadryl which is a relatively new add. To my delight it seems to knock out any lingering shadows and I sleep better. Never was a dreamer but I've been having vivid dreams. This I attribute to the DALT but its only a guess. Following a diet would be a better physiologic test but my lifestyle and variable schedule would make this darn near impossible. To be a bit analytic about this I should start withdrawing some treatments but I am so happy to have relative control of the beast its not worth it. Same philosophy that makes all studies hard. Bottom line it is great folks are trying this and continue to report on their experience. Information is power and helps fill in the blanks while helping others. This forum is such a great place!

as you wish

Doesn't work that way. Theories have to be proven before they are accepted and an eponymous designation given. You should clearly state this as a theory. I know you call it a postulate at the beginning but your treatise talks like you are speaking facts. Some of your basis is correct but your conclusion is entirely unproven.

Does this have another name. Nothing in traditional literature has this moniker.

I think the logic has do do with an extension of pharmaco therapy. When exposed to neurotransmitters receptors canbhave in specific ways, they can down regulate (reduce in number), up regulate (increase in number) or stay the same. That sounds like a garbage can answer but reach type of receptor acts in a specific way. The other thing is that each drug has a specific affinity(attraction) for the receptor. A drug can bind irreversibly to a receptor thus effectively reducing that receptor availability or it can actively compete with other molecules (drugs and naturally occurring neurotransmitters) for the receptors. I believe those with more experience believe the psilocin attaches to receptors and that exposure makes the receptor less available for a while so repeated doses close together have less effect. It takes a while for the affected receptors to recover. This sounds confusing but there is logic for the recommendations.

Getting a proper diagnosis is important. Mayo can help with this but you still need a doctor near you to help get you the prescription items you might need. Important to find someone who will listen and help facilitate a treatment plan. You need to be educated and in control of clusters because no one but you understands. A physician partner will help once you find the right person. Developing an attack strategy for your situation is important so you don't scatter treatments when in the throws of a cycle. This site is great for getting valid, solid info. Bob's summary will be a great guide to give you an idea of the scope of treatments that have been helpful. Read it. Be sure to keep track of what you do and what works so you don'y tread over prior treatments and give treatments a proper chance by using good techniques (especially true of oxygen). There is an app one member has developed and can assist you in making record. Good luck

The "Oath" in its ancient form has been modified over time and direct references to abortion, euthanasia and charity removed. In the US each medical school has its own version which graduates take as a right of passage. The sum total of the Oath is "first do no harm". It's sort of the golden rule (love your neighbor as yourself) in medicine. From a licensing perspective each state has a code of conduct of ethical standards practitioners are obliged to follow. Violation of that code could lead to loss of license to practice. The typical state code is very patient centric and emphasizes privacy confidentiality and respect.