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Hi, I'm Imke and my husband has cluster since around 10 Years. I hope I am at the right place here. I have a question regarding Cluster because I really want to help my husband and I don't know what else to do. My husband got diagnosed just last year after a long horrible journey. I have been with him from his first episode till now. He has been through a lot, 3-4 attacks per night over months every summer. I am stand beside him helpless as hell. Him Taking so much pain meds till he throw up and could just crawl from bed to the toilet and back. We went to different doctors and through a lot of diagnoses, he got little empathy and even less help, just things like: You have weak neck musles, you should train more and stuff like that. Last year he finally got diagnosed and now he knows what to do when an attack / cicle starts and he wants to try mushrooms but is still nervous about it. Around this time of the year normally the cicle starts. But this time it did not yet but he has something we both now call nerve attacks. No pain. But about 2-3 Times a day (not every, but every other day) he suddenly is totally nervous and angrey and irritated. He needs to walk around (like when he has an attack, then he is so agitated and runs in cicles through the apartment) like crazy and feels every nerv in his body. That is nothing compared to the pain, but still he has to lay down after a while then and be alone and cannot do anything. I am not discribing this well I gueess. But maybe someone has experienced this too. He says it feels like an aura but the pain never comes. He has a doctor now who is specified for cluster, but she does not really know what to do about that. And he is too anxious to try the mushrooms in this state. Also he is in a depressed state of mind, I would even say burnout (has to do with his job and our financial situation). So I hope that maybe someone recognizes these symptoms and has any suggestions what to do. Thanks a lot.

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About to start registration and presidents reception!! Supposed to be around 80 first time attendees!!

I’ve been managing both for years now, and the overlap can get really rough, especially during high stress or mood swings. What helped me was keeping a detailed log of my mood and headache patterns to spot triggers. Also, during tough stretches, I leaned on support resources like a ptsd hotline — they’re not just for trauma, but helped me feel seen when things got overwhelming.

I'm a native Texan but Minnesota is home now. If you're looking for things to see in Texas, head to the Hill Country. The smaller towns and cities are the best parts, but Austin and San Antonio are full of cool stuff. By Texas standards that's a short trip from DFW. If that's too far for you, don't bother going far from the hotel. Fort Worth is generally more chill than Dallas, but both have a lot to see and do. After the those places, you gotta go for a good road trip to see much worthwhile: Lubbock, Big Bend, El Paso, Corpus Christi. I don't recommend anywhere remotely close to Houston, Abilene, Midland, Odessa. These are all places you should only be if you're being paid to be there. You can see areas similar to most of Northeast Texas minutes east of Dallas. A few minutes west of Fort Worth will give you a good idea about the inhabited parts of West Texas. Things get scrubby and sparce pretty fast out that way. Big bonus points: there's a high concentration of South Indian people north of Dallas, relatively near the airport. If you aren't familiar with South Indian food, go seek it out. It's different from the North Indian food available in most US Indian restaurants. Aside from that, you want to eat Tex Mex (not real Mexican food), any small town local BBQ place, and a decent chicken fried steak (they aren't all equal). I generally recommend local restaurants, but if you're looking for chains: The best meal at Whataburger is breakfast, but it's gone downhill in the last 20 years. Not usually bad now, but not what it used not be. Braums has better burgers and better breakfast (fight me) if you get a good store. They are hit or miss though. People say Dairy Queen is a Texas Stop sign, but I think Sonic feels more "Texan."

See you all in a few days. Should be another good time with the rest of the headbangers from all over the world.

The following is information from our valued sponsors: Lobe Sciences and Cynaptec Pharmaceuticals are developing a form of psilocybin as a medical treatment for Chronic Cluster Headache. Join us at this year’s conference to hear about the drug development plan and their passion for bringing a new treatment to market to help people with cluster headache. https://www.lobesciences.com/ (OTCQB:LOBEF CSE:LOBE) https://ca.linkedin.com/company/lobe-sciences https://www.linkedin.com/in/frederick-d-sancilio-42585316

I’ve had similar questions, and what helped me was tracking symptoms closely while also getting input from others dealing with both. I started using Migraine Buddy to log attacks and patterns—it’s not made just for clusters, but it still gives good insights. If you're curious, check out more details. It’s been useful for figuring out triggers I might’ve missed.

Our conference starts one week from today! We are quickly getting all the loose ends tied up and cannot wait to welcome everyone. We'd like to give a quick shout out to our sponsors- without them, this conference would not be possible. Registration is still open! Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

I went through something similar and ended up talking to people who really got the mental health side of things. Cluster headaches completely wreck me emotionally sometimes, and sorting out what’s from that and what’s more like bipolar isn’t easy. If you're hitting a wall or just want someone to talk to now, mentalhealthhotline.org has folks who actually listen and know their stuff. Helped me not feel so stuck.

First I have read of this and very good to know!

One of very common topics in finnish CH communities is regular use and especially over-use of triptans rendering oxygen ineffective. I have also experienced this myself. Some notice oxygen is less effective when usual and for some it does not work at all. That's a place where you don't want to be. But don't worry, when you stop using triptans the oxygen response will come back. There are also reports on other medications, especially when the overall medication burden is heavy. I see people all the time who have given up on oxygen and they are doing loads of prescription medicines simultaneously and attacks keep on coming.

Just one of many sources is HERE . There are other suppliers, just search demand or resuscitation valves. You'll also need a regulator with a DISS fitting. One source is Amazon.

Dan, is this a standard aborting time for you, or is it sometimes faster? I'm going to paste some info here that might help you speed it up a bit. >>>You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/. The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below. You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc. Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale. Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap). Be sure you are getting a good seal, particularly if you have facial hair. You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2. Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere. Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly. One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank. A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information.

Yes been pain free since January so can't complain just got flight home to get through but should be ok

Sorry @CHfatherforgot about tanks below a third being less affective

just to follow up- oxygen worked much better last night- stopped the first hit in about 10 minutes and the second hit in about 20. The third hit took more like 35 minutes but if nothing else, even if the last one took a bit longer to work the pain never got too bad.