Juss

I missed typing the analgesic part. You know, narcotics. I went that route, as busting didn't help. Go with what helps you. The science behind that doesn't help me. Nor do any of those alternative options, including Ketamine infusions. I feel that there are solutions to help us and that you have to look in all the places not considered. I believe mine began as an insidious onset in 2013? It doesn't matter.

I have my pet hypothesis but am not about to blast it. Well, crap, without all the hard science and following KISS, I am deeply focused on inflammation, microbiomes, dysbiosis, some of the macronutrients, micronutrients, the BCAA’s, and I am having a senior moment at 38 (yikes). It could be a few moments, it is late here. I will have to get back to you.

Oh, right. I forgot that this is all stuff you guys know. Perhaps I am misreading your post, but I won't post this, and my apologies. I tend to forget that this is common knowledge. I intended to help someone at the beginning of the process. Again, my mistake. Anything from hitherto will only be about aborting and cessation. I have researched cessation, but not by the means you all would explore. Or, should I say appear to explore. I focus on prophylaxis and not abortive medication. My background in anatomy and physiology was enough to scare me, and yet I still took and injected all that crap. Now, I refuse. If you wish to see the damage there are reputable autopsies and labs on (of all places) YouTube. The reason I don't focus on abortive methods is an untested, purely self-reported case study-on self- where the abortives perpetuated considerably more frequency, with profound intensity. I tested on a fellow CHer and friend, not on here, my suspicions were confirmed. I haven't conducted meta-analyses but I am certain I could prove this. That friend is better suited for science, he was a Navy Corpsman. I did disclose on a prior post about my prophylaxis. There are others that 8 years ago on here were far above my pay grade and could assist you on that end. I am not certain, but I think that they still float. I know that you were looking for a short answer and I can't provide one. While most try to tackle symptomology, I analyze, research, and treat the source. What good is doping your ass to oblivion (with analgesics) and waking up to repeat the process? There isn't a solution for all and my background began in highly technical and specialized sectors of HVAC/R, and then as a defense contractor. It proceeded to even more theoretical majors in college with enough science to understand this. However, being able to discern doesn't qualify me to do more than form an opinion. I am going to look for solutions, not band-aids. I analyze everything and look 10 years down the road, and not 1 second ahead. My approach is limited by the lack of science learned and sadly those in the know are not able to assist me, and it seems, rather dedicate towards the psychoactive approach. In sum, I try to prevent, and I am having enormous success. I am down from I think 8 medications, and I know 5 abortive to a calcium channel. I seldom have CH or migrainous episodes, and now I focus on Fibromyalgia Pain & Exhaustion which I am gaining traction on. It's a process. I feel as if you can free yourself of pain; however, it sadly can/will return. Without the proper knowledge, all I can say is that given its biological basis there is an inherent risk. My uncle is episodic, worked at Westinghouse Airbrake (high up the ladder), and his job was as stressful as it comes. He wouldn't get attacks. Now retired, he went from episodic to chronic. That stated, he uses Western Medicine, I use functional medicine. I doubt mine will ever return as bad as it was, but it is incontrovertible that at some point I will have a 10 attack day or week.

D

This is the quintessential guide on the art of rhetoric. Okay, a primer. You can throw the rest in the wastebasket. I am shocked by how my public university education required this in an introductory course, yet I know some soft Ivy Leaguers that have never heard of it. http://www.jlakes.org/ch/web/The-elements-of-style.pdf

I'm sorry to hear your situation and rest assured that you can hire an attorney and that it does not cost upfront; however, they take a substantial chunk of back pay. And sadly, those attorneys that you see on TV are not the ones that you want to turn to. Mine was/is an R.N. and an Attorney. There is a cheaper more efficacious way, congressional inquiry. My family knew my representative, and I only hired an attorney to expedite the process. I cleared denial/appeal/approval in under 6 months. I understand that most fight for years. The point, write your congressman. Don't be verbose. Brush up on Shrunk’s Elements of Style. Most write their life story and that causes your entire case to go unheard. Keep it to two pages, hard facts, no pomp and circumstance. Write like a lawyer and your representative will contact you to assist in a few days. Write with pretentious diction and all nonsense you won't get a return email. When I wrote a congressional inquiry most of the available information was garbage. I will see if I can locate Shrunk’s classic (most have never heard of it). Finally, most high-income earners fall under the 130% FPL, $1800 to $2000 SSDI disbursement. I believe some hit the $3,000 mark, I have only read of such. Here is the issue. At said income, MA (Medicaid) is null and void, unless you have substantial private, NOT FEDERAL, student loan debt. They offer few deductions. Further, SNAP (food stamps) requires for you to receive the full $234 that you be well below the FPL. If you deduct away every damn thing, you still start at 130% FPL which means you receive at best $30 a month. I believe in allowing the private sector to handle all of this and I feel like an awful person for taking a dime from the government. In my works, I knew of all the private-sector options, and thus it is inadmissible. Worse, both CMS and SSA are bankrupt. One of my honors thesis was a scathing review and neither can sustain operations. Sure, print money away. No one understands the velocity of money, the money multiplier, and the risk for hyperinflation that it imposes. I should stop, but while on that tangent just look at a small printing of money here and there. Aug 15, 1971, was the end. I am, well was planning a Masters, from the Austrian School and should disclose that. The point, don't rely on Disability as a longterm solution. You will have to find better sustainable solutions to make ends meet, and that is my situation. Last, this is transient. It gets better. I am not a social scientist, but I do read academic periodicals instead of the crap that most are hyperfocused on the tele too. There appears to be a transformation in the workforce, and the hybrid model appears to be a norm, not an exception. If you can work at home, and I should not condone this, crank out two all-nighters, then burn out, and repeat. I will find that writing guide.

I had enough paid in for SSDI but in my area, it is far from enough to subsist, and I discovered mine is on the substantial-end. Further, disability leads to debilitating isolation, depression, and further complications. After 7 years of living on 35% of what I am accustomed to, the income is just part of the problem. I'm going to get myself thrown off of here but with your exemplary medical knowledge, fire the doctors and go the functional medicine route. Two years ago I was banging Keterolac, DHE, and using Fentanyl Transdermal, with OxyContin for breakthrough pain. I fired all my docs started functional medicine and hired my disability attorney to explain to SSA that just because I don't see a damn neurologist doesn't suggest that I am not disabled. She also explained the same applies to my spine surgeon, pain management, and so forth. I am at the point that I can attend college, I take a calcium channel and no CGRP or Botox. I have seen what the abortives do to the organs, nope, no thank you. I take zero abortives. And it is no strange coincidence that once I quit the Western Medical Industrial Complex it’s been 15 minutes get out, I went from 30 medications to 4. That is in two years What is more, for the first time in 24 years I wasn't a pill-popping manic depressive crackpot relying on some Charlatan proclaiming “academic teaching psychiatrist.” I fired her as well. I now see a Psych NP and take Lithium ER. That doesn't surprise me. Fire your doctors. You know far more than me. Write your scripts, you can as a P.A. or N.P. in MD, and doctor yourself. It isn't some esoteric convoluted mess that they make it out to be. Last, I have shit days. When the Fibromyalgia and Stiff Person Syndrome kick in, I am knocked on my ass, and all bets are off. If not for the crippling exhaustion, I would attend university, push for my stipend/teaching position, and honors reinstatement. I'm 38. It can get better. Look in places you never thought to. This isn't indefinite unless you let it be, i.e. continue to explore the western approach of treating the symptoms and not the cause, the root. Everyone laughs at orthomolecular medicine, I don't, my life is fundamentally different from two years ago. Again, I thought this was permanent believed all the doom and gloom perpetuated on here, and to be fair I had both chronic intractable migraine and cluster headache, by ICD. I tried killing myself and came close more than once. Drown out the nonsense and start looking at the crap that you put in your body. Respectfully, if I with pursuing majors in Econ, Accounting, Real Estate Development, can discern my labs and dictate what my doctor has drawn, you can. Look into every deficiency and look at every angle: shit, piss, and blood. Once you eliminate all nutrients (macro/micro), then subject yourself to being a pharmaceutical lab rat.

Oh, I would beg you to see my spine surgeon, a former top 50 that practiced out of GBMC, but sadly he developed neuropathy and that ended his career. He halted my DDD. That isn’t possible, so they say.

I had my C5-C7 Anterior Cervical Disectomy and Fusion in 2010. Mine was bad enough that the spine surgeon put an implant in mine. I’m sorry, but I am not religious and can’t offer prayer. However, I can assure you the fusion is far less painful then what you are going through now. I went home and I think that I filled the schedule script, but only used a few! The L5-S1 had me screaming and I never felt that much pain in my life. Honestly, CH doesn’t even get in the ballpark. I don’t know how great your spine docs are in your area are, but we have a few of the top 50 spine docs in the country. One, I trust to send anyone to if you need the info. He is incredible, and I think his revision rate is near zero. His education is exceptional: Hopkins, Washington University, and Emory. All the top schools! He performs out of two General Hospitals, Montgomery and Howard County. Don’t let that scare you, those are where all the wealthy Federal Contractors live. His office is in Potomac. I.E. homes start at 3 million. The other one is the chief of staff for Neurosurgery/Spine at Union Memorial and that hospital is affiliated with the Cleveland Clinic, for Cardiology. And it is nationally ranked in other areas. Last, I hope that it gets better, and I am alarmed that they didn’t operate 8 years ago. That is why I am offering doctors in my area. They aren’t knife happy, but ah, damn man that is scary sh$t! Good luck!

I don't encourage anyone to jump on the megadose experimentation unless you have a solid idea of what you are doing. I do megadose on what is safe. My baseline is an energy revitalization powder that contains over 35 vitamins, minerals, even the BCAA’s/Protein. I use a potassium gluconate powder to reach about 60% of the RDA, the rest is met by diet. For protein, the RDA of 0.32 per pound is grossly understated; I subscribe to 0.8 per pound, and that isn't for bodybuilding either. I intake at least 800mg of Magnesium, and I take up to 1200mg every few hours during a migraine to abort. When I could afford the IV treatment during an attack I would do that with IV of insane doses of C. Now I megadose on Magnesium and C powder (ascorbic acid) until the issue is mitigated. At my height and weight, that is 135 grams of protein. I don't use whey. When I was heavy into weightlifting in the early 2000s we all knew what that did to the kidneys, the body, and how bad it is for the body (acne is a prime indicator). Plant-based is best. I use one shake a day and the rest through diet. Diet is easy. Eggs for breakfast: no cheese, no butter, and God no, no margarine (that will kill you fast). Don't believe the pseudoscience from the 90s, I eat 4 XL eggs a day, and my total cholesterol is almost too low, 170. There is ample evidence at 160 or lower people with mental disturbances become suicidal. I consume at least a cup of cooked beans a day, and couscous or whole grain rice. I hate vegetables but stomach 1.5 servings of corn, 1 serving of peas (technically a legume), and a serving of carrots. I supplement with a Garden of Life powder that provides the other required 5 servings of fruits and vegetables, the super greens, phytonutrients, and so forth. I'm Croatian and so we don't consume meat like American’s. Well, I am 2nd generation, and I still don't. Red meat is almost nonexistent, and that deli meat, bacon, and processed meat according to Harvard is linked to a 30% increase in Colon and Pancreatic Cancer. I notice when I eat that mess an instant onset of headache occurs. All that salt, preservatives, and chemicals can't help. I eat poultry at most 6 times a month. I don't believe in Paleo, Keto, or fad diets, but my hunch is that steak and deli meat will trigger headaches and that it will lead to coronary artery disease, and eventually kill you. If that doesn't help, as in my case, then you add, only clinically proven supplements and what western medicine can help as an adjunct. I use feverfew and butterbur, with over 3000mg of nicotinic acid, 3000mcg of B12, at least 800mg of magnesium, vitamin C to the bowel (in my case that is 6 grams for breakfast, 6 for lunch, 4 for dinner, and 2 for bed). I also take a Nordic Naturals Super Omega 3 (the best quality of EPA DHA), I mega dose on D, and should disclose that my serum level is low. I should also disclose that I have stiff person syndrome and even when my B12 level is normal, I run the risk of pernicious anemia. Then, I treat the gut. H pylori are linked to migraines. I use caprylic acid, and Pearl Elite Prebiotics ( to my knowledge the only prebiotics that survives stomach acid). Since NSAIDs cause Candida overgrowth, I use white willow bark when it gets nasty/intense. I also treat the thyroid, despite a “normal TH level.” it doesn't take an Einstein to realize that the TH lab is inaccurate. I use a supplement that provides 10,000% of the daily RDA for iodine, provides selenium, and a lot of zinc. Not surprisingly, your BPH symptoms (if a middle-aged male or older improves overnight and in two weeks you can fire the urologist). Finally, there isn't a one size fits all approach, and even I have to resort to the western medical-industrial complex of doctors “it's been 15 minutes I don't care about you get out” model of medicine. I get my Psych NP to write for a calcium channel medication that can be used for self-harm/cutting prevention. Though I don't cut, with my personality disorder she can get away with this. Why do I do this? From experience, all neurologists treated me like a pharmaceutical lab rat and had zero interest in my well-being, and I have seen world-renowned neurologists. Truth is, you can fire your doctor, and doctor yourself. I found the NP’s to spend considerable more time with you, and provide exceptional care. The problem is, to my knowledge, only a handful of states (like mine) allow them to practice on their own. I now refuse to see an MD and only see NPs. It's a matter of preference, I suppose. Last, I have enclosed a baseline journal to prove that vitamin supplementation has a basis, and I encourage all I you to treat the gut (it starts there), treat the nutrient deficits, then try herbal supplements, then pharmaceuticals. I get one migraine a month. I was daily, or up to 5-day benders. And my Fibromyalgia, Chronic Pain Syndrome have improved enough that I could manage with Tramadol (schedule 4); at one point I was on Fentanyl, Demerol, and OxyContin (Schedule 1). And the batshit crazy part 120 lorazepam as a protocol/front line for the stiff-person syndrome. Megadosing on magnesium until normal levels eradicated most of those issues. When I do wig out, hydroxyzine (no scheduled) resolves it. Here is the journal: Vitamin Supplementation as Possible Prophylactic Treatment against Migraine with Aura and Menstrual Migraine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359851/pdf/BMRI2015-469529.pdf

That should be a good start!

The last one, I promise, Whitley, hits home on many levels. He could have been huge had his demons not overcome him, something I get in many ways. Music is my life, and I spend hours listening to it each day. Up to 20 hours a day, depending on a headache/pain cycle.

It is nice to see some trying to bring Outlaw back. Sturgill produced this for Tyler.

Waylon always starts my day Moonie kills it on steel and pedal. He was the greatest. Waylon and Moon what a combo.

Congratulations on being free from attacks. Take the opportunity to enjoy yourself first. Then, concern yourself with the particulars: You may go years without another episode. Others may be capable of advising you; respectfully, I shy away from that. Again, concern yourself with living life and then put your house in order. I had 5 days with only 4 attacks per day and I enjoyed a few dinners in Little Italy. Heck, I went these past 9 days with only one 3 day migraine, and I cooked a lot. Eventually, I got around to the laundry. All of my bills are set up around my disbursement (set it and forget it). If you can afford it, let a fiduciary and accountant handle your finances. I can't, and so I make sure to automate all of my bookkeeping, investing, and bill pay. That is the other trick, delegate every da$@ thing you can (away). Or, what you can trust in another hand. Life is too short to be concerned about the hassles we once had when we had the six-figure lifestyle. It is for me. If you still have investments, property, and hard assets, I understand. It can be easier said than done.

Divalproex and Olanzapine are the heavy hitters, the TKO for weight gain. The last thing that you need is polypharmacy, Toprimate will counter that weight. Oddly, these doctors will try that on Cluster Heads, the research to support is conflicting. Topamax is known in the headache community as Dopamax. If you can get past the neurocognitive issues, it gets better. I lost 65 pounds, all the weight gained from Risperidone (similar to your olanzapine) and Duloxetine. I can't understand, the first and second trials failed. Now on the third trial, Toprimate helps substantially. I am the freak show: I was off all blockers with the 5 Vit M attempts, and Don’t make plans L (7 or 8 attempts) provided everything Huxley described in The Doors of Perception, nothing for the headaches. You may have tried, or be describing Migranal, it has a similar method of action as Ketamine. The dihydroergotamine. I have enclosed the following for you: Comparison of Intranasal Ketamine, Dihydroergotamine, and Valproic Acid for Abortive Migraine Treatment in Pediatric Emergency Department. Respectfully, it is all relative. It will get better when the damn headaches leave me alone, I take a break and go to an indie book shop. And I go on a book bender. Treat yourself when well. If it's a nice bloody NY Strip and Double Mash at Ruth Chris (if your favorite steak house) go for it. Sometimes, weird as it seems, cleaning house and cooking. Here, Pastore’s and some of their Sun of Italy products make for good cooking. Pastore’s Don Pipino works every time- Roa’s is too rich for my blood. Take the great with the shit. You have appeared to have a solid grip on the issues that come with being Chronic. 3754_ihc-2019-poster-final-8.8.19-pdf-for-online-poster-forum.pdf

I’m changing direction, and offering my limited, but beneficial, knowledge to REASONABLE research requests. As far as I know, I have found a damn good amount of what is available through the Creative Commons and Golden, and Green Open Access databases. If not stated, I can’t make any promises, and given that ever hour of the day-sometimes minute-is subject to extreme change, this could take time. I often go from stable to mental, or calm and pain free, to run over by a freight train, lit on fire, and w/ stiff person syndrome my muscles spazz so damn bad that ODing (joking) on Carisoprodol/Diazepam won’t shut it down. Well, now the standard is the train wreck drug, Tizanidine. I won’t get into the issues fibromyitis causes. My only request is that it be posted for everyone. It’s been about 8 years since I’ve had exposure to formal research, but I can try to decipher the journals. I AM NOT a neuropharmacologist, neurobiologist, psychopharmacologist, neurochemist, neuroscientist, but I have had my finger in all; sadly, much gained, learned, was destroyed by ECT and poly pharmaceutical approaches to treatment. Final wrap up, all reasonable requests are considered; please avoid being myopic, and oppositely, encyclopedic.

I have enclosed two sources of information for your GP or specialist. One is the latest pharmoclogic guide for CH (to sparse and already known). That’s is in PDF. This is a link to a PDF with Full Open Access-all 151 pages-from the most recent journal, well open access, 2018 11th European Headache Federation Congress Jointly with 31st Congress of The Italian Society for the Study of Headaches https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-017-0817-z.pdf You will make it through, one second at a time. My thoughts go out to you. I’m in the middle of it as well. I just have my own way of going about it that would upset people. Though, not as bad, I am in pain, but found ways to mange. 2 years ago I was shooting up 2 DHE, 1 Keterolac, and eating 5 Butabital/APAP/Cafeine/Codeine and I won’t list the prophylactic use. It got out of hand. It’s a process. One day at a time. I quit everything but Dopamax and a home derived NSAID cocktail. It’s a long story. Good luck. Gotta black out from pain. If you need any other medical information, journals, clinical trials (surprising amount exist), things of that nature, send me a DM or better email me. I gotta go. It’s getting time to pass out. Brandt2020_Article_PharmacotherapyForClusterHeada.pdf

I’m never good at this-at all. Anyway, it’s obvious that you are going through it. I don’t know your psych and don’t recommend blasting it. However, lamotorgine is a miracle drug for depression and that’s coming from a crackpot whose had his brain fried 60x by the shock docs. You have to titrate it to prevent Steven Johns, but at 100mg (low dose btw) I came out of a 25 year depression coma, I’m only 38. Lithium ER has some evidence in treating CH and it will help lability, most only need 900 of the ER, sweet spot is .8 For the attacks I get them. This is extremely controversial on here, but being a fellow brother in arms nut job, you are privy to neuroleptics. Get a hold of a dopamine agonists, a good one, like haloperidol and try that out. Another taboo option on here amitriptyline. Both will knock you out at least, the best choice possible. Most important both target receptors in the brain that have been under research for over 30 years for CH research. The first research that I see was on said drugs. I’ll skip the science. Will it work? No promises. In India, they are going mega hardcore and using Clozapine, which if you recall can fatally lower your white blood cell count. That said, if you check it every week, you should be fine. I don’t know if your are in the US, but it’s federal law that they do: they put you in a federal database. It’s more hardcore than Thorazine (the famous Thorazine Shuffle not sure if you had that pleasure in the looney bin). It will ensure you rest. Third option, antiemetics, some do work-Phenergan comes to find. Phenergan/promethazine actually is a neuroleptic from the 1940’s. Fourh Option: Keterolac. Another taboo to most. It’s just a potent NSAID that Robs Peter to Pay Paul. Fith Option: My Preferred, Prednisone taper. If that doesn’t do it, hats off to you. You earn the you are going through some serious shit award. I won’t get into how that works, but I have yet to see a case where it doesn’t calm down. Final Note: I’ve seen others (other forums pop on search engines) bring up CNS stimulants. Unless narcoleptic, in mild cognitive impairment, controversially used for chronic fatigue, and dependent on just who you ask ADHD, then Methylphenidate and Amphetamine Salts, even Straterra seems a dangerous idea. Without getting into it, it gets back to D2 (Dopamine). I took several of the controlled CNS for several reasons outside CCH and Chronic Migraine, all of my headaches improved to some degree by stopping. Most of that research as conducted in the late 90s mid 2000s. I’d go as far to say that it’s mostly in the backwaters of Neurology for treatment of headaches. Never-mind the potential for misuse, the trials were small, from what I can tell not well conducted, and it’s just a bad idea. Im actively pouring through every academic database in attempt to find you the latest abortive pharmacology guide for primary headache to take to your GP or headache doc if lucky. If you haven’t tried Baclofin and Tizanidine for prophylactic use, it’s worth considering. And for the record, I’m not for polypharmacy use or big Pharma; rather, just getting some mother f$&king relief.

This is the full findings, 150+ pages in PDF available for download. Respectfully, it appears that CB’s primary interest is in busting and psychoactive use, and therefore , I don’t post all the info and research that I have on Dopamine Agonists, Hypothalamic activity, pituitary, Norepinephrine, just to a name a small out of the vast few research topics. Honestly, there is a plethora of research (mind blown). That stated, through the beauty of something called a Creative Commons license I located the full report and findings from the International Headache Congress and EHF Joint Congress 2021, courtesy of the venerable Journal of Headache and Pain 2021. Im sorry it’s not about busting but figure it may help someone. There is fascinating research and findings in there, of/related to the latest neuroimaging and review of neuroscience, migraine, among a treasure trove of things. https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01293-9.pdf

Real brief, when I’m this active it’s never good. It means a nasty round of headaches, chronic pain, Borderpolar episodes, all this crap is coming. If I’m up all night, and tomorrow that tells me just how bad it is going to be. I’m taking on something that I feel needs discussion. Often, understandably, the discussion is about the obvious and not the insidious. To keep this a safe discussion I realize how difficult it is to talk to someone. This is a free PDF to what is unequivocally considered the best self-help book written (those aren’t my words, not inflammatory rhetoric). This is a download link for a PDF file. I did all the precautions (save a few pages). It’s safe! The book: Feeling Good The New Mood Therapy Burns, does an exemplary job of distilling Aaron T. Beck’s work, especially Cognitive Therapy of Depression. I gather that most aren’t used to my style of writing so to speed up, research Bibliotherapy and that will bring you up to speed. Feeling Good The New Mood Therapy is evidenced based, and is proven to be as efficacious as using all types of antidepressants for treatment of depression. Finally if you are in a dark place (sorry it’s tough for me to use the S word b/c of 10+ near fatal attempts, 1 coma, actually 2 and a TBI) go to hospital and check in. If you can’t drive, call an Ambo. If in DMV Sheppard Pratt has a walk in clinic open every day till 10 PM, and an exceptional hospital GBMC (right on Charles Street) is literally right up the private road. Please don’t contact me for hospital any local will do! Now that bases are covered I hope that you read this. It’s broken down into plain English, and is quite accessible. If you enjoy and want a solid medium, and so I don’t show partiality, ThriftBooks, BetterWorld Books, and Abe Books all sell for very good used about $4 free shipping. If you insist on paying $18 it’s available at all major bookstores. Again, this is virus/malware tracking free. The site is legit. Oh, if you apply the principles and research it can help with pain. https://onuploads.com/8l4v521w8r1x/Feeling_Good_by_David_D._Burns.ePub.html

I can’t post what I wanted to, but this is relevant to the topic of sodium valproate. I hope you all find utility in all of this. Emerging Subspecialties in Neurology: Headache Medicine https://n.neurology.org/content/88/13/e122