Juss

I did get you confused with Bob and have propensities to do such things-my mistakes. Regardless, someone else did address the Botox issue and it is best to take the advice or consensus of the group (why I recommended an opinion). I admit to experimentation, we are all desperate, but I am paying for it in numerous ways. I'm on the extreme and that is why I ask for opinions on such serious matters as this. Good luck. It is manageable but can take years. I don't bullshit a bullshitter.

Most people aren't and I forget that. This entire being involved around people thing is Greek to me. I belong to complex theoretical systems and equipment, not humans. They used to give me a thermos of coffee a few packs of jacks, some uppers, and throw me in a warehouse-size room to build and design control systems (Self-taught by the way). Or, they would have me fix the most complex RTUs or refrigeration systems. Anyway thanks for the heads up. It's a steep learning curve.

The War on Drugs Under the Pressure

I hope that it doesn't conjure sadness. That is going back a few years, I can relate to the song on several levels.

Whelp, it's official winter is coming, the yearly Borderpolar Pill Popping Manic Depressive Crackpots R Us BS is back, every year (around this time). That is why I am around so much, trying to distract myself. While he is solely responsible for the strictly pop, Urban Cowboy Era of Country, basically a useless contribution, it's still a good song. Could Have Heard a Heartbreak Johny Lee I have the utmost respect for King George, but he was never country enough for me. That said, I think everyone loves this classic, Check Yes or No by King George. Again, nothing but respect for what he did for the country scene. Hell of a man and good human being. It was Tragic when Randy had his massive stroke, such a gift to country music. That voice, one in a million. While it was over 6 years ago, I hope him the best in recovery. I hated most contemporary country music, but Sammy Kershaw sings part of my life story. Politics, Religion, and Her “I ain't first class but I ain't white trash,”sums me up. Sawyer Brown Some Girls Do Alabama Song of The South (Stars and Bars Forever)

I know that the yearly wholesale acquisition cost of Erenumab 140mg and Fremanezumab 625/225mg are $6,900. OR, $575 per month for the monthly injection. Some sources claim that the rest of the mAbs are $8,500 per year or more. In other words, while subjective, and I understand if people don't take my side, we should not overburden our insurance until exhausting known options. Further, I feel insurance should only be for catastrophic expenditures. These drugs need wholesale, sliding-free market options. Know source wants to state the final cost of Botox to the taxpayer or insurance, all of it is speculative and all sources exceed $5,820 a go. These aren't cheap options and without proper testing, it's tough for me to say. I admit to being one that used to jump on board the latest novel treatment, when I had the Cadillac Health Care, now I question what I did to my brain and body. My point is, why do you think so many resorts to Vitamin M? I don't get on board b/c it doesn't work (for me) and because I am taking my approach which will take years of research but by all means, I support and stand tall who just use Vitamin M. Worse, we haven't discussed copays. I hear of people paying a 1/3 of the drug price. I posted a comparison to the novel drugs from the 90s. They pull this mess in the psychiatric world. The best is and always will be a drug from the 1940s, Lithium.

I should note that I support other CGRP use, as I unfortunately subjected myself to disability and the atrocities of CMS. Their formulary is restrictive and at one time you could receive fremanezumab (Ajovy), and now you can’t. That worked, but I develop a resistance and tolerance to everything but certain psychiatric medications that no doctor, nurse practitioner, or scientist can figure out. My point, don’t think that only Emgality will work. I know some with Cluster Headaches, not involved in here, that deal with the VA, and they notice results with Eranumab (Aimovig). What I don't see people discussing and what CH Father could fill in is the adjunctive therapy of Botulin Toxin. Botox with a CGRP-and I am not the only one who it appears to be efficacious past placebo. That is an area that I don't explore, as I stopped seeing Academic Teaching headache specialists, and neurologists; however, I keep current on CGRP for if you look into my pathophysiology posts, all the evidence substantiates it. I just get better results doctoring myself, on the sidebar. I don't suggest the aforementioned without insurance unless you are Bezos. I don't think I am allowed to put the wholesale prices on here, but I doubt many can fork the bill. I hope that @CHfathercan enlighten about Botox, as he is the genius. For me, they are symbiotic and you need both to deliver results. He would know, as he is the one most in the loop. I would hate for you to pay the huge copays on things that aren't necessary.

Lilly Reveals Critical Barriers to Optimal Migraine Care and Insights from Novel Clinical and Patient-Centric Real-World Evidence, Supporting Lilly’s Preventative and Acute Treatment Portfolio at AHS 2021 (Read closely, galcanezymab was the top performer, and the bottom performers were the oral CGRP, at the very bottom-nurtec. Lilly is the pharmaceutical giant that produces Emgality (galcanezymab), but in all honesty I am too damn lazy to pull and cite well over 10 studies of galcanezymab being the superior choice for CH. For once, a pharmaceutical giant is not toting a bunch of… https://www.centralcharts.com/en/145854-lilly-and-co/news/3195189-lilly-reveals-critical-barriers-to-optimal-migraine-care-and-insights-from-novel-clinical-and-patient-centric-real-world-evidence-supporting-lilly-s-preventive-and-acute-treatment-portfolio-at-ahs-2021 From what I could pull, this is the only clinical trial not sponsored by Biohaven Pharmaceuticals on Rimegepant (Nurtec). This is from the venerable NEJM. Bare in mind none of the trials, I think I have reviewed all, were conducted on Cluster Headaches. Nothing looks impressive either. My background isn’t necessary, but friendly advice, if you need to pull celebrity status incessantly to promote a product, than you have zero basis to begin with. This we can learn from the SSRIs, which Dr. Kirsh proved worked no better than placebo. https://www.nejm.org/doi/pdf/10.1056/NEJMoa1811090?articleTools=true

Here is a review article on the immunogenicity of biologic therapies for migraine. It does follow, if you get me. I think it has utility, a lot, but without an advanced degree in neurobiology or the like I can only draw logical inferences. It takes hours upon hours of reading and you can’t draw from one thing. CGRP isn’t going away and is fundamental in CH and migraine. I made other posts on the pathophysiology of Migraine and the Pathophysiology of Cluster Headache (both circa 2017 to current and from Goadsby) under the thread “How Do You Stay Happy.” Respectfully, I don’t feel like posting given only 4 or 5 people-if that-take the time to read it, and no one bothers to reply. It becomes pointless. https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-020-01211-5.pdf Again, it all follows. Therapeutic novelties in Migraine: new drugs, new hope? https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-019-0974-3.pdf

That is going back. I just noticed your post, and I think I am supposed to be accomplishing something today, and for once, oh well. I should be around later.

I will admit that Feverfew is dicey in treating CH, and I think it was the University of London that did a clinical trial of Feverfew on CH, however, if it works, oh it works. It helps my migraines in Amazing ways. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3210009/ This is one of the best alternative headache treatment guides (written for Medical Doctors). Fire your doctor, less on disability and requiring CDR, and doctor yourself. https://headachejournal.onlinelibrary.wiley.com/doi/pdfdirect/10.1111/j.1526-4610.2011.01846.x Diet and Nutraceutical Methods for the management of Headaches: https://headachesociety.ca/wp-content/uploads/2017/12/Orr-diet-supplements-Ceph-2015.pdf Go to your GP, keep in tune with full lipid panel, comprehensive metabolic, renal panels, those things. I fired all my doctors. I have a Nurse Practitioner for primary care, and a Psychiatric Nurse Practitioner for mental health and save a fortune. I’m lucky only 20 or so states allow Nurses to practice without supervision.

Here is a Top Secret Experiment of mine, it’s not like anyone reads my posts. Well, perhaps I can think of 3, the same three that reply on this thread. Or is it 5 people? Thus, I don’t mind blasting this. Experiment with Boswellia Serrata. Here, I will point you in a direction: https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/1129-2377-14-S1-P37.pdf

Here is more for you to consider and something else that I followed for over a decade, low testosterone and androtestoterone. I had low T and used DHEA, among other things to jack my Testosterone up. My blood levels confirmed the raise. My headaches dropped significantly. To be fair, my doctors don’t question my motives or why I ask for specific blood/lab draws. They already know what in the hell I am up to. Lol. Getting insurance to cover, and methods of coding, yeah that takes a monumental effort on all of us and how to manipulate the ICD. Clinical Symptoms of Androgen Deficiency in Men with Migraine or Cluster Headache https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01334-3.pdf Be sure to print out the pharmacotherapy guide. That will help you with treatment. Dr. Goadsby is the forerunner on all headache prevention and treatment.

Please read this and be patient; I have followed and suspected inflammatory markers through cortical spreading and neuroinflammatory signaling for years. This journal is one of a few that supports my gumption. That is most likely why Vitamin D, and EPA/DHA have such a profound impact. Most say”oh that is for Migraine.” I roll my eyes. It all follows. Cut the f$&ing shit. Parenchymal neuroinflammatory signaling and dural neurogenic inflammation in Migraine https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01353-0.pdf You should certainly be staying curtain on this one, as autoimmune and CH in men are hand-in-hand, as are psychiatric comorbidities. It’s not rare to have all three, quite prevalent and most are not aware. This is a jackpot find of a journal. I mean, it’s easy to find journals, but finding the ones through structured searches rarely pans this out. Headache and immunological/autoimmune disorders: a comprehensive review of available epidemiological evidence with insights on potential underlying mechanisms https://jneuroinflammation.biomedcentral.com/track/pdf/10.1186/s12974-021-02229-5.pdf

This one is important: as we know, CGRP targets don’t break the blood brain barrier limiting treatment options. This journal presents a future targeted approach towards treating Migraine. Again, with treating migraine comes CH treatment and they do have a symbiotic relationship. This appears a target approach to CH in future years. Electrical stimulation of the superior sagittal sinus suppresses A-type K+ currents and increases P/Q- and T-type Ca2+ currents in rat trigeminal ganglion neurons https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-019-1037-5.pdf

@Shaun brearley I think across the pond it is called a GP? Give this to your GP, if you are lucky your Neurologist. This is the most recent guidelines in pharmacotherapy for Cluster Headache. In other words, which medications to prescribe. This was released to the doctors a year ago. Dr. Goadsby was one of the authors. Pharmacotherapy Cluster Headache https://link.springer.com/content/pdf/10.1007/s40263-019-00696-2.pdf

Treatment of Cluster Headache: The American Headache Society Evidenced Based Guidelines https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.12866

Here is an update on Pathophysiology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6324919/pdf/jpr-12-269.pdf You want to follow Dr. Goadsby’s Work. I consider him the expert not only on CH, but on Migraine. I have limited access to JAMA, Science, Nature, Lancet Neurology (anymore, and sadly), and that is where you find his work. He is the rock star of neurologists. I did find this 70 page, relevant journal on the pathophysiology of migraine from 2017 https://journals.physiology.org/doi/pdf/10.1152/physrev.00034.2015 Here is a 2017 reputable and relevant journal on the pathophysiology of episodic cluster headache https://journals.sagepub.com/doi/pdf/10.1177/0333102417716932 You will have to forgive my ignorance, as I have not followed this revived antiquated idea, neuromodulation. This has been used in some semblance for centuries, and now is under extensive testing for CH. I am a wait and see type of person, after the deleterious and abhorrent side effects of ketamine infusions which fomented a 6 year span of debilitating end-stage catatonic depression. Here is a current article. My current psych NP’s exact words in reference to the Ketamine was “they gave a manic depressive with known SI Ketamine, did you sue them?” Yeah, know one discusses the dark side of said drug. https://www.eneura.com/wp-content/uploads/2019/07/Halker_Singh_R_2019_Neuromodulation_for_the_Acute_and_Preventive_Therapy_of_Migraine_and_Cluster_Headache.pdf Migraine and Cluster Headache- The Common Link https://curis.ku.dk/ws/files/216974242/Migraine.pdf Review of Device Therapies for Migraine and Cluster Headache https://www.jurispro.com/files/articles/omeaspectsonthepathophysiologyofmigraineandareviewofdevicetherapiesformigraineandclusterheadache_2862.pdf

While not intentional, I understand considerably more about the pathophysiology of migraine than CH and feel that neurologists and scientists have a solid understanding of migraine pathophysiology. From such knowledge, they can begin to develop drugs to treat it. They say that drugs take a decade to develop, but correct me if I am wrong I thought more like 20 to 25 years. For example, Divalproex Sodium, developed in the early 1970s, didn't gain a patent and come to the U.S. market as a mood stabilizer for Manic Depressives- excuse me I’m supposed to call it by the Orwellian Post Modern Bipolar Disorder-until 1992. By then, it was intended as an anticonvulsant. I have several other examples, some took 30+ years of development. That, or they sat on the shelves, gained new life, got some half cooked theory that they could work, and with brilliant marketing were turned into blockbuster multibillion dollar drugs. It’s best that I keep my mouth shut. Now to throw a wrench in this, they have known for considerable time about the Trigeminal Autonomic Cephalalgias role in CH, and now they found a link with, guess what, CGRP a few years back. The pathophysiology of CH is not intended to be esoteric by a group of intelligentsia (Top Neurologist); rather, it is that clandestine. Further, they aren’t attempting to be debonair about this, it is f#%ing complex and confounding. Here is one-of many-links to reputable journals of the pathophysiology of CH. Change is coming, and if you read my following posts, it takes time for drugs to develop. Fast tracking a CH drug doesn’t have sex appeal like an Alzheimer’s drug. Right, we can fast track drugs and knock quite a few years off the process of approval in this country. Truth is they do this already, it is called cronyism, again, I better keep my mouth shut. Here is a link. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5909131/pdf/AIAN-21-3.pdf

You are welcome. If you feel a bit off, go back to the norm. If fine, start over. It has propensities to be a tumultuous, taxing process. In a cruel twist of fate, and this is how I know that I am not smart, the medicine won't help while you take it, but coming off-be prepared for the worst headaches of your life, and I don't know why. Someone a lot smarter than I am will have to explain how that works. You will most likely get some nasty headaches that will have you screaming bloody murder. Second, I added in the Benzo use because that class of drug, in conjunction with the antiepileptic (anti-seizure), is super nasty to come off of. Certain psych meds as well, but the aforementioned can have you come close to needing a chemical straight jacket, i.e. a potent neuroleptic. I know everyone knows what CSD is, neuroanatomy 101. I thought that the following articles on Cortical Depression Spreading were necessary, and if you pay attention to the Ca+ waves, it makes sense why Toprimate is efficacious in Migraine, why it can prevent or reverse chronicity. Toprimate targets the Calcium Channels, but not like a blocker say Verapamil. I know, everyone knows this: I will post for those that don't. https://www.sciencedirect.com/topics/medicine-and-dentistry/cortical-spreading-depression https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1007/s10194-009-0164-9 How does this help you? Well, unfortunately, about everything starts with Migraines, and CH--the redheaded stepchild--follows suit. I will have to look at the latest neuroimaging journals and see what is in the pipeline for CH. There is far more than people realize. Oh, and yes, these are old journals, but sometimes they are reliable. People make the mistake of thinking that the latest, is the greatest. And then, they fail to realize that so much of what is available today is questionable, ghostwritten, sponsored by someone such as Lilly or Pfizer, good luck discerning fact from fiction.

I'm not a doctor, but severe withdrawal and grand mal seizures can occur with abrupt withdraw. I don't know your dosage but you need to taper anywhere from two weeks, up to two months. Say that you are on 100mg you would probably taper 25mg at a time. I've never been able to stay on top of the damn metric and imperial shit, but I believe you use milligrams. Please excuse my ignorance. I would not trust my advice, but start with 25mg for two weeks, then go down another 25mg, and keep dropping. Never stop an antiepileptic cold turkey. I've read of crazy, awful shit happening. And I don't think that they allow Benzo use in the UK, I know that Halicon got banned in the 90s, but that is a prime example. I spent 6 months tapering off of the Benzo Lorazepam, had seizures all the time, was violently ill. The point, it can (I would go as far to say) kill you if you just quit without titration. These aren't lightweight drugs.

Last few, this one goes out to all that have been married a few years-K.T. Oslin Do Ya (If you can't tell a pattern this is my life story)

Steve Wariner is a gifted guitarist, instrumentalist, deserved member of the Opry, and prolific songwriter. He dominated during the 80s, though he ain't country. That said, compared to the booty-shaking BET Station caliber rap music, auto-tune crap country of today, he is. Anyway, I am posting this because of his amazing guitar work. There ain't nothing like coming home to a cute southern country girl, down-home cooking, and this is true, “there ain't nothing like the love of a small-town girl, and country on the kitchen radio (when it was country). I hate city life.

My other life story by the great forgotten contributor to the Outlaw movement in country music, Johnny Paycheck, The Old Violin

My life theme song, from the greatest voice to shortly bless Country and Western, the late the great Keith Whitley. He had an amazing octave range, you could hear the pain in what he sang, sadly his demons and addiction got to him, something that I understand. He sang this same song I think on his last live performance and anyone with a known history of severe life-threatening depression could tell he was end-stage. It's tragic, as I'm agnostic and he was a gift from God. There will never be another singer like him, never. Tragic. Though Countrypolitan, pure country-pop this an amazing song, he sings so emotive and with pain. RIP Whitley, we need real neotraditional country (again).