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Update on this in case it ever helps anyone. After taking baclofen for a couple nights I actually got a few pain free nights without any form of medication. Two nights ago I was back to my usual number of hits which I attribute to using some cannabis before bed. Last night I again used 20mg baclofen and slept for 11 hours pain free. Woke up with very minor headache aborted in ~5-10 minutes with oxygen and energy drink. Likely will use the baclofen through the weekend and try to go without starting Sunday night to see if I can get back to PF with no drugs.

Mikeh, were you able to source oxygen in Toronto? My regular supplier is refusing cluster patients bc of covid. They are only supplying their “core users” at this time. Let me know if you managed to get some and from whom. There are online mushroom dispensaries now as well in Canada which is nice. I haven’t used them yet but it’s an option. Also, I go to the headache clinic at Women’s College Hospital and they understand our condition well. It does take a long time to become a patient (10+ months for me for the initial appointment years ago) but once you are in they are super fast and responsive. Sending pain free wishes to you.

@mikeh2017 At the risk of beating a dead horse, you 100% must get oxygen. It is the only thing that, for me, makes this curse manageable. I hope you're keeping your head up today and enjoying whatever pain free time you have. That's really the only way in which I feel I'm winning the battle. As for your original question I just try to immune my wife and family as much as possible. That becomes more doable with an effective abortive. Doesn't hurt that my attacks are nearly all while my wife sleeps. Best of luck and keep coming back.

Clusters suck and are immutable part of our existence. I fully agree with advice given. There is no way in hell you can ever get anyone to appreciate the pain or come close to understanding unless its a fellow clusterhead. Even then our experience is our own. People think we exaggerate, embellish or plain seek attention. Of course thats not true at all. The bigger issue is anyone who has experienced the pain of childbirth, kidney stones, gout, a broken limb or othe painful event usually only has it once twice or a few times. We get way worse over and over and over. The way I deal is by trying to be my best self and carry on while in cycle as normally as possible. I do my best to not let the beast win. I do tell my staff when I'm in cycle so they understand my asshole self has a reason but I never expect anyone to understand; s\cause they can't. Yo must constantly work to be the best you and avoid self pity at all cost. Ignore the well intended suggestions of the essential oil, ibuprofen, gratuitous "i have that too", Forgive them for theres no way they can do anything but leave you alone

Not much to add to all the post above. My wife will kind of be on standby in the background. check on my when she knows I am having a cluster just by walking by, if I raise my hand of make any type of movement in her direction she knows I need or want something. She has a idea of things I might want during a cluster and will just go through the list until I give a thumbs up or nod my head. It is very strange for both parties I guess. For me I don't want to disrupt anyone else life with my condition but at the same time I don't want to be alone. My wife does not want to bother me by sitting in a chair looking at me the whole time abut does not want to leave me all alone incase I needed something. It is a tight line we all walk on and you will just need to find a way to compromise and let it all go. Kind of like you said freeness of death goes away with the pain try to let everything associated with the cluster go away with the pain. Do not hold a grudge towards anyone trying to help in regards to how they reacted to your headache, if you didnt like it just explain how to make it better next time. Like Jon mentioned if you can not get that 02 script take up welding and give the 5hr energy drinks a try they work great for me. Best of luck to you and your family,

Yup...YESTERDAY!!!

You need a new doctor.

...there isn't much at CB that isn't golden...the responses you've received above are among the best I've seen and should be in a text book...and I'm an old guy on these forums... ...whatever you need to do to get O2...DO IT!....if ya can't find a doc with the simple smarts enough to look up THE PRIMARY abortive (next to or along with triptans) as recognized in the literature and real world...then you're gonna have to take up a welding hobby.... ...the very first time you successfully abort a hit with OXYGEN, as the pain drains away like fricken' water down a tube.... you WILL cry with joy....and probably curse whoever stood in the way of getting it in the first place. 1982 was my first...I can still get teary remembering.. ...many of us find that an energy drink alone or in combo with the O2 is incredibly effective in aborting or lessening a hit... .....I am concerned with your listed drug cocktail...with the exception of Zomig, which is my abort of last resort and highly treasured...in the unlikely case that one of these "prevents" works you won't know WHICH one, and you'll ride the merry go round forever (especially if your cycle ends on its own anyway). ...pregabalin (Lyrica) has a very low success rate and some crummy side effects...propranolol is an old drug (first drug tried on me nearly 40 yrs ago) that sometimes works for migraineurs and rarely, if ever, for clusterheads......verapamil can be effective (was for me for a while) but SR is extended release with much fewer reports of effectiveness, you want the immediate release, and the sweet spot for most is 480 mg/dy in divided doses, some (my case) go up over 1000 mg to find relief in high cycle...(heart rhythm should be monitored)... ...put the D3 regimen and/or mm in your bag of tricks and the above may be moot.... best jonathan

Hi. I'm new on this forum, but wanted to share some thoughts on the ketogenic diet. My 20 year old son has had episodic cluster headaches for the past three years. I would do anything to provide him and anyone suffering from cluster headaches some relief, which is the reason why I am writing. I recently read a journal article from a group of researchers out of Italy who placed 18 chronic cluster headache patients on a 3 month ketogenic diet. Of the 18 patients, 11 experienced full resolution of their headaches and 4 had a headache reduction of at least 50%. Here is a link to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/ I realize that this is a small sample size and the results are positive but preliminary. But I wanted to share this information, so that others may be able to benefit. We have a family friend who has chronic cluster headaches. I worked with her to put her on a keto diet in June and she has improved dramatically, although she is also on Verapamil and a vitamin regime. She temporarily went off the diet at a wedding and immediately noticed a shadowing effect of an impending cluster headache. Please note: The keto diet may not be for everyone. There are some contraindications (e.g. diabetes) to the keto diet, and you can Google them. If needed, please check with your health care provider before trying it. Since most doctors know very little about nutrition, they may try to talk you out of it. For those of you who are interested in trying this food plan and are unfamiliar with it, the diet is roughly 75% fat, 15% protein and 10% carbs. The study used 10 grams of carbs per day for the first month and 20-30 grams of carbs for the second and third months. This is a pretty drastic change from the way that most people currently eat, so perhaps 50 grams of carbs per day is a good starting point if you don't want to go lower than that. Ketones are a source of caloric energy used by the brain, heart and muscles similar to glucose (sugar). They are produced in the liver as a by product of fat metabolism when insulin and blood sugar are low. Insulin spikes after we consume high carb/sugar foods and drinks, which is bad for the body. No need to count calories. Eat until you are content, or better yet, stop eating when you are 80% full. The good news is that you will stay full longer on a fat based diet than a carb based diet, so chances are that your appetite will not require you to eat every few hours. A carb diet is like building a fire with leaves and pine cones. There is an initial burst of flames (energy) but the fire dies out very quickly. In order to keep the fire going, you need to constantly add more leaves and pine cones (in other words, keep eating more carbs). A fat based diet is like building a fire with wooden logs. The fire burns for a long time without having to add to it. The human body can store about 2,000 kilocalories of carbohydrates and about 40,000 kilocalories of fat. The goal of keto is to burn the fat stores that we all have, as a form of energy. But we can't get to the fat stores if we are eating muffins, donuts, bagels, etc. and drinking sugared drinks, and the body is working hard just to manage the extra sugar in our systems. As you are transitioning to a ketogenic diet, some people go through the "keto flu". You may not feel so great at the beginning, but after a few weeks, will really notice the difference. Even if it doesn't help with cluster headaches, there's a very good chance that you will have more energy, more mental clarity, lose some weight and see other favorable outcomes. Here are some references for you: Keto food list: https://www.marksdailyapple.com/keto/shopping-list/ Keto recipes: dietdoctor.com Thought leaders in the keto world: Jeff Volek, Steve Phinney, Jason Fung, Tim Noakes, Mark Sisson (marksdailyapple.com). Feel free to google them and/or watch their videos on You Tube. Good luck and I hope this helps you!