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You really should go back to your doctor and ask for the oxygen .I promise you it will become your best friend !!!!!!!! I love seeing my tanks of o2 in my house it gives me great comfort to know they are their What Shaun said is just what I was thinking (I notice that my thinking apparently contains a lot of typos!) You can't run away from having it, but when you face it, you can do wise things to make it a whole lot less bad. You clearly are searching for those things, as everyone here is, and coming up with some interesting discoveries. But it's hard for me to see a reason why you wouldn't go for the D3 regimen full-bore, give busting a try, get oxygen, and maybe even give the new CGRP medications a shot (among other things).

Some notes that might be pertinent to some of this discussion. The predictable recurrence of CH cycles seems to have been greatly exaggerated. In Rozen's 2010 study, "Cluster Headache in the United States," of 1134 people with CH, he reported, "In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin." In that same study, 22% reported having just one attack per day. Regarding the effects of light, there was this interesting thread here a while back about glasses preventing CH: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/?tab=comments#comment-78836 In that same Rozen study, 6% of people reported having a father with CH. Hereditary data are all over the place, but overall, the chances that your daughter will have hereditary CH are very low. A JAMA 2020 report said "Across the 22 large cohort studies, the positive family history rate of cluster headache varied between 0% and 22%, with a median of 8.2%. The largest 5 studies had a positive family history in 18.0% (numerator not provided), 5.1% (40 of 785 cases), 10.0% (numerator not provided), 2.0% (12 of 609 cases), and 11.2% (56 of 500 cases), respectively. https://jamanetwork.com/journals/jamaneurology/article-abstract/2764341#:~:text=Meaning Per this systematic review,as well as environmental factors. [Note that this is family history, which could be anyone in the family. If you limit it to fathers, the percentages are much lower.] Since I have a daughter with CH (but -- for those who don't know -- do not have CH myself), I understand your dread, and I think Bosco' was right about the advantage she would have from your knowledge, in the very unlikely event that she does develop CH.

You really should go back to your doctor and ask for the oxygen .I promise you it will become your best friend !!!!!!!! I love seeing my tanks of o2 in my house it gives me great comfort to know they are their

The only time I don't smoke Cannabis cigarettes is during an attack! Non-smokers getting CH's is all the proof I need. I refused oxygen & the injectable form of Sumatriptan...Sometimes I don't bother with the suma and face the pain head on and say "Let's roll bitch, what you got"....I'm slowly learning I can't run away from this fight Moonshine! You're on to something here! I looked into this a while back. All types & brands of alcohol have different levels of histamine, and Histamine cause vasodilation of the blood vessels and nasal congestion. "Histamine assessment was done in 52 wines (red, white, and champagne) and in 17 beers by radioimmunoassay. Histamine levels ranged from 3-120 micrograms/l in white wines; 15-670 micrograms/l in champagnes; 60-3800 micrograms/l in red wines; and 21-305 micrograms/l in beers" https://pubmed.ncbi.nlm.nih.gov/8005453/ I think gins & plain vodka has the lowest levels so people should stick to the hard stuff! I quit drinking 2 years ago but I'm very tempted to experiment on myself by getting pissed up!

Honestly, You are my new hero. With all the shit you've been through in your life it takes serious balls to tell Cluster headaches to go fuck themselves and truly mean it

There are some rules, not necessarily theories, I hear passed around with CH that I don't agree with. 1) Smoking: Listen, if this were the 90s, the Eastern Shore of VA, $10 carton days (when I was coming up) it would be dim lights, thick smoke, and loud music in this bitch. I'd be smoking like a choo-choo. There appears to be an alarming correlation between those with CH and former smoking habits. That stated, it never triggered (my) CH. If it does not cause your CH, who cares, smoke. Your gonna die at some point. 2) Drinking: This one is difficult. For some reason, beer causes massive headaches, but with moonshine I am okay. I make moonshine and drink accordingly. For some, it is wine or those wine benders. I seldom drink, the majority of the time I use the liquor as a trading offer for something else. Bottom line, I do say with alcohol to tread lightly and stay away if getting hit. I'm neither chronic nor episodic, and I don't know how to explain my headaches either, in my circumstances I wing it. 3) Sex: There can't be a God if you get your rocks off and have a massive migraine and/or CH. Honey, that ain't natural. I get myself in trouble here all the time, if that shit happens, we all have needs, and even at 90, that is why there is Viagra-I rest my case. Get some Narcs, and abort with opioid analgesics. I'm sorry that ain't right, and it's cruel. If in a drought, there is the champagne room and sites like Backpage. And since I dug this hole, I don't see why women even date men, as hot as women are. Lord have mercy, especially when hot to trot. 4) Drugs: Party on man. Again, I get in trouble, but if you can control it and it is not a trigger-go for it. Uppers, downers, and turnarounds put me in an 8-year intractable cycle of hell. Unlike most, however, I'm all for the coke and whiskey, fast women parties, and am not afraid to put that out there. The problem is that for most, most drugs appear to put you in a cycle you can't get out of. Getting off of Barbs, Benzos, Uppers, Downers took 1 year of shakes, convulsions, seizures, a few near-death experiences, and a grand mal seizure. And, I now have Tardive. Your choice. I'd do it all over again. What a fucking rush. Talk about kickstarting my heart, I made Ozzy Osbourne and Motley Crew Habits look like choir boys. 5) Abortive Medications: Oh hell no. Go ahead foment wicked rebound headaches. It's your choice, but I had every headache specialist admit off the record that you are best to avoid them. If Oxygen does not work, as in my case, I feel for you. Prophylaxis is paramount. Again, it's your choice, but that Fioricet at 180 counts, and banging 3 DHE a day does more harm than good. Oh, and shooting up Keterolac 1 or 2x per day. I don't know, I admit to being on the outer fringes but, everything is case-by-case. The intention of this was don't live your life around CH: live your life and adapt to the bullshit that CH brings with it. It is not easy. I am convinced that you can determine your triggers, mitigate them, and then find prophylaxis. It's not easy, may take years, several doctors or nurse practitioners, even functional medicine. Most importantly, you need to be your doctor first: read, research, and find what works for you. I don't think anything can be categorized or programmatic at times. Everything is subjective to the situation at hand, and the person experiencing the headaches. Good luck.

Education has propensities to implement biases, dogmas, and, even pragmatic methods of thought that don't add up to a damn thing. I received a better education by reading books and turning wrenches as an auto mechanic, then HVACR Mechanic. Working in refrigeration and oil heat taught me more about physics than any college class did, the same with chemistry. Oh, and I learned more about polyphase and electrical theory by applying and designing control systems, than some fancy college education. The same can be said with applied calculus in the trades vs in college. I'm sorry, a college education is an indoctrination to force compliance. It does not prepare you for the reality, most with a degree don't know their ass from their elbow. If you conjured that gumption about Cluster Headaches then you exhibit a higher level of faculty and intellectual capacity. I attended college out of necessity, after two multi-level spinal reconstructions. I hated it, and it was bromidic. I slept through my classes and had full scholarships. The trades are substantially more challenging than any college course that I took. Concerning neurological care, I find that neurologists-especially under the guise of Academic Headaches Specialist-make the headaches much worse. All they did was drug my ass to oblivion and cause a few heart attacks. I see a PMHNP for my cluster headaches, after 8 years of failed treatments: she fixed it on the first visit. Nurse Practitioners are always the best. I can prove it. On that note, the exemption is for my movement disorder neurologist/neurophysiologist and my neurosurgeon with a specialization in complex spinal reconstruction. And the integrative anesthesiologist that does stem cells and platelet-rich plasma medicine, regenerative medicine. For some bullshit reason, I have to see a physiatrist just to have my muscles shot up with what those Alien Face women get, the fuck is it called? Oh, Botox! Movement disorders make your muscles tighter than a tick's ass. And, in our state, insurance requires that for coverage of any autoimmune diseases you see a rheumatologist. Thus, I am stuck with that. I try to avoid doctors. They take a disease-based approach and are “it has been 15 minutes get your shit and get.” Doctors don't care, want that $500,000 paycheck, and have zero empathy. Most are not qualified. Nurses take a holistic approach, are lucky to make $125,000, and are not in it for the money. And, they study nutrition. Doctors are not even required to take a single course in nutrition: every nurse I have worked with has taken several courses in nutrition and orthomolecular medicine, with hundreds of hours in clinical nutrition. Honestly, I hate doctors.

Hi Monica, I must say I'm somewhat inspired by your post, because tonight I took it upon myself to help myself, with the wider goal of helping the whole cluster community. It can be stressful to convey our pain to people, but awareness is hard to raise otherwise! Projects like this can be cathartic, but also could literally save lives, so it's a win win situation! *I've always wanted to be a filmmaker, but since my diagnosis in March 2020 I've felt this is no longer possible. However, tonight I also learned that sadly, the actor Daniel Radcliffe also has suffered with CH's for many years, and maybe it's a pipe dream but at least I'll have someone to send my screenplay to if I ever write one! (Fantasies are healthy, as they give you hope!) Best wishes and thank you for your post, David, London, England

Monica, I'm story #3 in that booklet, so my situation is different, and I'm probably not material for what you are thinking of writing. I wish you the best with it.

Thank you CHfather, I read the booklet you sent. For a long time, I did not want to talk to, read about or even think about Clusters when I was not in my cycle. I found it to trigger me and put me in a depression. Reading the booklet is very triggering and I'm sure for others, reading other peoples stories can only add to their own story. But I still think there needs to be a book in the stores and in the libraries that gives people the chance to sit with this devastating world we live in. If your interested, I would love to talk with you to maybe get your take on your world and how you've been able to navigate your way through this website with so many people. Let me know, Monica

Interesting article: https://www.theguardian.com/lifeandstyle/2021/mar/13/it-blew-my-mind-can-psychedelic-drugs-cure-addiction-depression I guess it could very much work in favour of CHers if psilocybin does become legalised for medical use for mental health disorders. The market for mental health is obviously huge (much bigger than for CH) so anything that brings psylicobin closer to legal prescription is a good thing.

So I heard back from Prof. Arnold Wilkins at the University of Essex and this is what he had to say about his research into the glasses. Thank you for your letter, which I was very pleased to receive. I now have two out of two patients whose cluster headaches have remitted with precision tints. The tints were both provided by the Intuitive Colorimeter, but they were not the same. The second patient’s tints did not absorb short wavelength light. This leads me to suppose that the critical feature is that the tint increases visual comfort, and that the Colorimeter is a good way of selecting the tint. I would be extremely interested in setting up a trial, perhaps in collaboration with your organisation and a medical advisor. The Intuitive Colorimeter is widely available among optometrists in the UK but there are few individuals with the machine in the USA. I am currently getting together a list of US practitioners who have the machine and might be interested in being involved in a study. A few points about funding such a study. The firm that make the Colorimeter and tints have offered 10 free pairs of the lenses in the first instance. So far, practitioners have offered their time for the assessment without charge, but it would be nice to avoid taking advantage of their goodwill. As I am sure your will be aware, 2/2 patients without cluster is a good ratio. I have hope that we just might have stumbled upon a really useful non-invasive treatment. I will write again when I have a list of US practitioners. In the meantime, if any of your members live near Ottawa and wish to try precision tints then I would recommend that they get in touch with Karen Monet of Opticalm (https://www.opticalm.ca/) Best wishes Arnold Arnold Wilkins Emeritus Professor University of Essex UK