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@NeitherHerewere your concussions before your first ch cycle?

I found more hope. This one might be hit and miss for others LAIRD brand coffee, particularly their "performance" line. It has lions mane, chaga, and other fungi. Caffeine is onenof those tricky things for ch heads. I respond to it pretty well. If it doesnt work them the worst thing I get is increased restlessness and let's be honest I wasn't gonna sit still anyways. To my surprise after a few sips the clusters backed off and I fell asleep with the thermos on the recliner. I finished the thermos after I woke up and was pain free all night. This morning the shadows started slowly rolling in as the barometric pressure started to climb up to 30. This particular brand seems to be more effective than the other coffee products we've tried this year. It might be worth noting that I get clusters and migraines usually ontop of eachother or back and forth between the two so this could explain why I feel relief while other ch patients are freaking out about how thats a cardinal sin. Ita also worth nothing ive had repetitive concussions, heat illnesses, and dehydration events so my eggs have been scrambled beyond just ch. Hopefully this helps. This is the second time I've noticed immediate and persistent relief from Laird brand coffee out of colorado. The one I use is "performance" and its red on blue labeling. About $15lb/bag. They also have organic powdered creamer that is pretty much powdered coconut. I think the mct oil in that can help some too. This is all just speculation of course. Correlation is not causation but thisbis what im experiencing this week. We were going to add in "p" but it was unnecessary each time with this brand for some reason. I also drink it black no sweetener

Congrats on finding help. I started taking magnesium and saw some improvement in shadows. Nice to see a list of other potential things to try.

Great to hear a success story. I've learned Verapamil is a pretty common course to try and gentler than Amlodipine. I was on Amlodipine for almost a year and while it did take a noticeable edge off other side effects were unbearable. Thanks for sharing a good outcome. Michael

thank you for posting this.

This last season was harsh and violent. Things changed pretty dramatically worse than they already were. I didnt think they could get worse but this is atleast the third season I've said that. This time I changed things juuuust a bit. Instead of drinking water I started exclusively drinking body armor hydration drinks strawberry in particular. I also started getting melatonin in my system. I slept when ever I could. I exercised as much as I could. I noticed I kept gasping for air before and during the attacks so I stsrted practicing deep breathing through out the day. Within 3 days it started to fade and within 5 days it was GONE. Im getting very very light shadows this week from the persistent overcast but its a whole nothing burger. The body armor drinks are full of : magnesium B12 Potassium Vitamins A C E NIACIN B6 and zinc I think flooding mysystem with those was what made the change. I have a hard time getting myself to drink water during cycle and the coconut water in these drinks seemed to not only get me hydrated but KEPT me hydrated. Something in this has probably already been mentioned multiple times already but I wanted to share incase it hasn't. I also recognized that my attacks really start up around noon and again with much more intensity between 5pm-3am. This gave me more time to prepare knowing those times in the day were going to be "no go times"

I want to thank you folks for not alienating me for this post. I can't express just how important that is for the uninitiated / less involved to actually talk about CH and our experiences. I also want to note that just because I have CH and am a recovering addict doesn't mean I allow myself or others to treat me as anything "less than" I was recently accepted onto the community CERT team(community emergency response), have the approval of the associated Search and Rescue team. I'm also working on another opportunity working with the state in a volunteer capacity involved in natural disaster /defense roles There is hope for a man/woman who will do anything necessary to achieve their goals. Just because I have CH doesn't mean I cant be a valuable asset to my community in some regard. On the contrary, I believe it means I can be extraordinary in these roles. The substance abuse was from a lack of purpose and meaning in life. I think i finally got my way into the purpose that those drugs slowly robbed me of. Ch is the stone that sharpens me. Theres this belief that language is power. How we use words is what gives things power. It changes how we see things. I've learned to stop giving ch power over me and to weaponize it to make myself stronger. If I can survive something that I know feels worse than getting shot (personal experience) then I can work through damn near anything. The first step is convincing myself I can. Never surrender.

I really hope this helps a lot of you that suffer from the suicide headaches I sure am glad it’s been working so far so good another year and I will know for sure that I am trust free of this torment which caused me to lose my first wife

My 34-Year Battle: How Amlodipine and Lifestyle Finally Ended My Clusters Background: I’ve suffered from cluster headaches since I was 22 years old. I am now 56. The Pattern: My cycles were episodic, hitting almost exactly every five years. The Breakthrough: In 2020–2021, as a new cycle was starting, my doctor prescribed 10mg of Amlodipine (a calcium channel blocker) for both high blood pressure and headache prevention. The Result: Remarkably, it worked almost immediately. It shut down the attack and has kept me 100% pain-free for over four years. Dual Success: I also managed to lose weight (maintaining 160–165 lbs), which brought my blood pressure to a perfect 110/70. The Strategy: Even with perfect blood pressure, I chose to stay on the 10mg dose through 2026 to ensure I bypassed my "five-year" attack window safely. My Message: If you struggle with clusters and also have blood pressure issues, talk to your doctor about Amlodipine. It isn’t the most common choice (like Verapamil), but for me, it was the "off switch" I needed after decades of suffering.

Hi Mike, I had a similar experience. While I was on the oxygen it would work, but when I came off it would ramp and return. My father used oxygen and it worked like a charm for him, 20ish minutes deep calm breathing and he could abort. I was never able to get it right. I discovered hard cardio (20+ minutes of running with my heart rate near 140) aborts almost all of my attacks. Just a theory, but I wonder if someone has a high VO2 Max if the oxygen isn't as effective? Not enough of a variation between normal breathing and high concentration of O2? I don't have a big sample just me and what I remember my father telling me. Keep trying, listen to any advice you can get, and I hope it works for you.

I guess now is the time I chime in to the CH boards as my clusters start rearing their ugly head (it's funny how I ignore this place for months or years at a time, and then come crawling back). But yeah, I'll echo this that energy shots are basically the only thing that's ever worked for me. And even then it's not a panacea, as they maybe work at best 33-50% of the time. I've actually found that the Aldi brand for some reason works the best for me. I initially tried the larger energy drinks but it's difficult to get it into your system fast enough, but the energy shots are small and pack a punch.

Not sure if anyone is checking this thread, but wanted to say Thank You! to everyone who participated and organized the webinar last week. I was diagnosed with clusters in 2009 and had them for about 15 year before that. Failed multiple treatments, some with adverse effects. I didn't pursue any more treatments or engage with communities when I discovered hard cardio worked as an abortive for me. I just closed off and focused on that for years, but about 6 months ago I decided to see if anything changed. I live outside Philly and I'm fortunate to be in the Jefferson system. I've had my first course of Emgality, anxiously waiting for my second. Dr. Mccrea, your description of the pain cycle, or the thought process resonated strongly with my experience. Joe, your story is both heart breaking and inspiring, thanks for sharing it. And, Bob, thanks for creating this space for us. Thank you again,

Not related to smell but there was an anecdotal post on a FB group a couple of days back from someone saying that if in the morning they have a particular song playing in their head over and over again, they are guaranteed to have an attack that evening. What happens beneath our conscious awareness where the central nervous system and layers of the mind communicate is absolutely wild. I would attest to the persons comments around often having a particular song stuck in my head first thing in the morning, much to my wifes displeasure as I crank it out on repeat for several coffee cycles, however I do not have a correlation with attacks the same day. Thank-you for sharing this and I am interested to hear more reports, if they are out there. Congratulations, from another with a history of substance abuse, for closing that chapter and may your future be radiant.

@NeitherHere I explicitly remember smelling an electrical fire smell or similar to it the whole 8 weeks of my last cycle. It was odd but unmistakable. I haven't really looked too far into it other than it's related to the sinuses swelling which can affect our smell. Congrats on 2 years clean too. I will see what I dig up on the elevated sensory levels.

...i can't speak to the connection of these phantom odors to hits or cycle except to say that for years i experienced similar. mine were burnt toast, manure, electrical fire, and a few others. my cycles were very close apart and it never seemed connected to cycle position or hit prodrome. as i recall these were random and "interesting". is also a symptom of other scary neurological maladies like MS...which i have been tested for multiple times (negative). that its a "tell" is actually a good thing for you... ...rapid change in barometric pressure...like hi to lo pressure weather wave was a guaranteed trigger for me and many others. re "noon", guessing your particular circadian rhythm... ...that there is WAY typical of CH...it would surprise if only occurring during these... .....boy howdy, YES! and mega congrats on off loading the monkey...from contacts and research it seems clusterheads are more prone to addictive behavior than "regular" citizens... best jon

This last season i've been caught off guard by a number of changes. One of these changes is the unprovoked sense of smelling/tasting cocaine or methamphetamine in my sinuses and upper airways. Now I won't be coy, i'm a recovering poly substance user and cocaine and methamphetamine were DOC'S of mine to some degree but its been almost 2 years since the last time i've even seen EITHER let alone even think about them. I don't get any other associated symptoms, i dont get high when these sensation hits me but usually that same day I get hit with a cluster AND migraine together. Rarely one or the other and consistently both together bouncing back and forth if not concurrent. The cocaine sensory anomaly seems to happen before the absolute most brutal attacks. This also seems to happen on overcast and rainy days as well around noon Does anyone else have sensory experiences like this before an attack? This has never happened before. Even when I was using it never had this sensation. Its as if I just sent a large volume of it up my nose. My sinuses also seem to swell causing congestion during these abnormal experiences too. I'm not sure what to think here but i'm choosing to accept it as a benefit in the sense that I have some sort of benchmark to recognize "an attack is coming "

I heard a similar story from a CHer in Canada last week whom once a year picks up everyone’s fav coffee, tea or whatever (he has it written down) along with some deluxe pastries and donuts and puts on a morning tea for his oxygen hero’s at the store. They appreciate it and I know he appreciates their very efficient assistance. Love it.

....one bit to consider, if even logistically possible for you, is to p/u and return tanks yourself. the O2 shop i used thought it amusing but appreciated. one phone call and i would have all my tanks in a rack waiting for me on arrival...quick switch out and on my way. this would also allow me to pop my head in the back room and chat/thank the techs. they usually don't see their clients, and i have always believed a face to the name is a game changer...once was handed an m60 regulator, no charge, with "use as long as you need" ...i still have it........

This is a great start! now just like CHfather said, work on getting bigger tanks. M60 and M tanks are good home use tanks and E is the travel size for me. Take care of your delivery driver when you can, bottle of water/cup of coffee. Maybe a snack from time to time? Whatever it takes to have them pulling for you. I have had drivers call me before they leave the building saying they did not have my tank size and adjusted from one M60 tank to 3 e size tanks. Pay your bill on time every time and you should be good to go. Cluster mask will also make a big difference in your abort experience. After the O2 is all in place start stocking up on a few other abort techniques. Mix and match them and your on your way to a happy cluster life!

good for you!!!!!!!!!!! but to the extent you can, keep pushing for a big tank -- an M tank, or an H tank. they ought to have them, and it'll save them a lot of trouble if you have one. aside from e tanks being small, it is not unusual for the effectiveness of O2 to go down when the amount of O2 in the tank reaches some level -- half full; one-third full -- so you can be getting less useful O2 than the tank holds. You're going to be calling them a lot (as i think others have mentioned, the O2 delivery person should be your new best friend, and you might get some extra or bigger tanks from them). i'm not sure what a "travel tank" would be, but anything smaller than an e is hardly worth it. e is plenty portable. with your current mask, block the open holes on the front of the mask with tape, or with your thumb as you inhale, so you're keeping room air out. cut the strap -- you don't want to fall asleep with the mask on your face. press firmly to your face so there are no leaks. normally, the recommendation is to stay on the O2 for some time after the attack has been stopped, so that you might prevent subsequent attacks. five minutes, some say; others say for roughly as long as it took you to stop the attack. many people turn down the regulator as they do this. you should do this, but with an e tank you hate seeing the tank contents go down.

Thank you both! After talking with the manager and requesting a call the branch manager of AdaptHealth, I received a call yesterday from the manager of the local medical supply company I initially worked with to get my O2 tanks. She said she received the emails from the corporate managers giving me a hard time about insurance not covering it, yada, yada and said she does not care that I pay out of pocket with my HSA! She apologized for the corporate folks and said, “you put my # in your phone and deal with me only!” I was so frigging relieved and joyous in that moment! I now have two E tanks that I can keep swapping out and will eventually get a travel tank and purchase the better mask from clusterheadaches.com Thanks again!

I am so glad you found something to help you get relief. That is amazing! Wishing you more pain free days and nights!

I am chronic daily cluster never a break. I have been 8 years no break maybe one week here or there. I have found that when I was going through perimenopause and during my cycle that I had longer headaches instead of 45 mins to an hour, I will go 4 to 6 hours during those hormone shifts. I tried to think, when I finally noticed it was a pattern, what am I doing different or what part of the d3 regimine might be more affected or depleting. Water, water, hydrate hydrate for sure during these shifts... that made a big difference. Anemia possibly?? during my cycle crossed my mind lower iron levels plus the hormone shifts d3 drops b drops... vitamins and supplements never seem to hurt and almost always help shorten my headache. Such a personal journey on this one because we all shift in different ways but we all do cycle one way or another. Maybe there should be a study for it. I hope you find some relief in your research!

WEBINAR Pain, Not Personality: Why Behavioral Medicine Matters in Cluster Headache Care Wednesday, April 8 from 7:00-8:00pm Eastern Time In collaboration with Clusterbusters, the Jefferson Headache Center invites you to join an upcoming educational webinar for patients living with cluster headache and those who support them. The session will be presented by Susan McCrea, Licensed Psychologist, who will discuss psychological and coping strategies that may help patients manage the challenges of living with cluster headache. Bob Wold and Joseph McKay from Clusterbusters will share their perspective as patient advocates and share insights from the patient community. Physicians Dr. Young, Dr. Marmura, and Dr. Nahas from the Jefferson Headache Center will also join the discussion. Date: Wednesday, April 8 Time: 7:00–8:00 PM (Eastern Time) How to Register: Click the registration link below: https://events.teams.microsoft.com/event/24bb6ffd-b82d-42cc-b970-b1b57c59a880@55a89906-c710-436b-bc44-4c590cb67c4a/registration After registering, you will receive an email with instructions on how to join the webinar. If the link does not open, copy and paste the link into your web browser (such as Chrome, Safari, or Edge).