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It sounds like you are getting the eye droop? I used to get those once in a while but not too much lately. Do you do stuff like press on your eye or slap you head? I really try to avoid those things. Many CH people have squished their eyes to heck. As for shadows, they def can vary and some are so strong that it's not far off from attack level pain! Hang in there warrior, I too had a huge set of attacks last night and I am trashed and full of shadows today.

Bill is a long-time veteran of cluster headaches. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during our pre-conference: “Oxygen Demonstration.” This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

A Beloved Clusterbusters Tradition: The Silent Auction & Raffle! Get ready for one of the most fun and anticipated moments of our in-person conference—the Silent Auction and Raffle! This time-honored tradition is not only a great way to connect and celebrate, but it also helps raise critical funds to support Clusterbusters’ mission.⁠ Attendees are invited to bring items to donate! We love seeing a mix of: Psychedelic- and mushroom-themed treasures Unique gifts representing your home state or country Handcrafted, funny, or one-of-a-kind treasures Expect some lighthearted competition, lots of laughter, and maybe even a friendly bidding war or two. It's a moment of community, creativity, and generosity—all for a great cause. Come ready to donate, bid, and have a blast! ⁠Let’s make this year’s auction one to remember. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

I got cluster headaches after a tick bite.

You could try some ice packs for the swelling. The ice might help to numb the pain a bit as well. The PTSD/Anxiety is a beach! I struggle with it all the time even when I'm in the clear. The one thing that I have found that helps is exercise and staying busy. I know some can't exercise without worry of an attack while others will use it as an abort. Ever since I was able to get a break from a particularly looong attack by jumping on the treadmill, it's been something that I do when I have bad shadows. Sorry I've not got much to help on this one. I hope your head clears up soon!!!

I had quite a brutal attack at midnight. This morning my eye was swollen and side of my head as well. Busting pain on the affected side since I woke up. I couldn't tell if is a hectic shadow or aftermath of the attack. I tried O2 for a while but didn't settle this pain and discomfort. Still have it at the moment. Pain med not helping. Anti-inflammatory as well. The anxiety is overwhelming since subconsciously my body is expecting a CH What do you guys suggest in this situation?

I bought a vitamin called Plenish k sr. Didn't use it as yet since I read that it has alcohol as one of the ingredients. So I'm not sure if that would be a trigger since alcohol in general is like a death sentence for me. It came highly recommended to boost potassium levels since I am convinced that my potassium is really low hence the cramps. I am scared to try it though, part of me is saying just wing it for a few days and see how it goes. Lol I seriously didn't know about the blood clots. Thanks for letting me know. I only knew that it cause avascular necrosis cos it's what caused me to have my hips replaced at age 30. I know that Prednisone whilst helps a lot for a lot of conditions such as wheezing, skin issues etc, has a whole host of side effects that doctors don't tell you. Yet is is the most cheapest drug on the market. After I stopped the Prednisone going on 3 days now, I didn't have the cramps for the last 2 nights. However I have pain in the areas where I was getting the cramps still. The beast is still around but had no choice since it's hard to juggle with cramps whilst having an attack and taking O2. I did try orange juice to pick up my potassium and it did work. So Prednisone also depletes ones potassium. Thank you for the info. Much appreciated

I would strongly encourage you to discuss these leg cramps with your doctor. It certainly could be from the prednisone, but there are some serious side effects of prednisone that can cause pain in the legs, like blood clots. i don't say this to alarm you, but if simple measures aren't releaving the cramps, please call your doctor. Prednisone can work wonders sometimes, but it is important to be aware of uncommon serious side effect potential. I had a blood clot in my arm when i was on prednisone, fortunately it was in a surface vein so it didn't turn out to be serious. But it felt like a tight muscle for a couple days before i realized something else was going on. Let us know how you are doing, we care!

The Microdosing Collective is a non profit organization promoting community, education, and policy to promote a new paradigm for optimal well-being. We are seeking individuals who meet the following criteria: Are at least 18 years old AND Experience chronic headaches (15 or more headache days per month for a minimum of 3 months) AND Have used Psychedelics during the period when they have experienced these headaches Participate here: https://study.quantifiedcitizen.com/headache for any questions: hello@microdosingcollective.org

Dr. Shuhan Zhu is a neurologist with a subspeciality in headache disorders. She works at at BWH/Faulkner Headache Center where she sees patients with migraine, cluster and other disorders including CSF volume related disorders. Challenges in Diagnosis of Cluster Headache How does a doctor handle diagnosis when the path isn’t clear? Dr. Zhu found a case that confounded her for 6 months. She will go through the steps she went through to help get an accurate diagnosis for her patient. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

Counting down to the conference- I'll add speaker highlights to this thread. Patient Advocate, Craig Stewart will be flying all the way from New Zealand to join us! He has studied and become a resource for the community on not only the D3 regimen but in understanding nutritional impacts as well. The goals of his talk will be: A comprehensive guide to the Vitamin D3: Anti-Inflammatory Regimen, including what it is, how to start, loading dose protocols, safety considerations, and real-world efficacy. He will also explore the growing body of research connecting Vitamin D, nutrition, and the gut microbiome in migraine, while highlighting how this emerging field may eventually shape our understanding of cluster headache as well. His presentation is set for Friday after lunch at 1:30pm CT Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

July 5th is Cluster Headache Survivor Day - a day to celebrate bravery, courage, strength, empathy, and hope. Pain free wishes to all and H.O.P.E.

....if you're taking a statin (e.g. Atorvastatin) for cholesterol control a typical side effect can be leg cramps. boy-howdy those 200AM cramp-athons will get your attn. yes, i take Mg, but find that skipping a statin dose now and then is muy bueno. your doc may disagree...so discuss it....

I neglected to mention that, guzzling the kool-aid and buying into the positive Amazon reviews, I have used the EXACT SAME THERAWORX AS @CHfather, and I was also shocked at how reliably and consistently it worked for relief of intense leg cramps - for me, it has routinely worked to relieve full blown cramps in progress, and I still religiously keep it at the bedside in case. This is iron clad proof that the world's greatest minds think in an identical fashion , although I'll admit I hadn't thought to try it right before bed as a possible preventative. I'm also now starting to consider the greatest mind @FunTimes comment about too much caffeine as a possible culprit.

I have been very, very surprised that a product called Theraworx actually seems to help to quickly relieve my intense leg cramps. It's not preventive -- it's a cream or roll-on that you apply when the cramp begins (though sometimes I use it when I'm getting into bed at night as a possible preventive). It's just magnesium. Since it's topical and not consumed, maybe it wouldn't affect you as you have described. Amazon.com: Theraworx Relief for Muscle Cramps Foam Fast-Acting Muscle Spasm, Leg Soreness with Magnesium Sulfate - 7.1 oz - 1 Count : Health & Household I also concur with Jeebs that if you can find a form of magnesium pill that doesn't have negative effects, it would be good. I would say that oral magnesium has helped me more than potassium.

I very much like, and vigorously salute, the @FunTimes reply, and will just add my experiences as an adult life-long nocturnal cramps experience-er, whose wake up calls have been largely in remission for going on a year now: They can be a moving target, just like our 'ol CH buddy. Magnesium citrate worked for me for keeping them at bay for like a couple years at one stretch, then failed. Magnesium gluconate seemed to help at one point also, but individuals apparently can have different reactions to different forms - citrate worsens cramps for one family member, but gluconate doesn't Yep, the potassium-rich foods bananas, avocados, potatoes and sweet potatoes can potentially help significantly (at least until the target may shift) I didn't realize the sudden wake up cramps could be anything other than a ridiculously huge emergency-feeling level of painful until more recently when I had a couple that were a strange and thoroughly unfamiliar kind of 'moderate' I'm known to do occasional 'walking lunge' type leg exercises. Not sure what, if anything they're doing for me in the cramp department, but my current remission has coincided with the addition of this 'Advanced Electrolytes' supplement, one pill with dinner. I might question whether especially high doses of potassium are really required, but of course am fully acquainted with the desperate times/desperate measures mindset many of us here have been known to adopt courtesy of the CH!

I will sometimes have leg cramps but I think the cause is to much caffeine. What helps me is Bananas (potassium) drinking lots of water and stretching on the floor (fake yoga). Not sure if this will help you with the pred cramps but it does help me.

Good day guys, I hope all are managing. I have been taking 50mg of Prednisone daily for the past few weeks, in an attempt to assist with the loading dosages of my D3. It is helping, however I am having excruciating leg cramps mainly at night. Now it is also cramping on the muscle surrounding both my hip replacements. Get them some times when I'm driving also So, I do know that Prednisone actually depletes Potassium levels. Magnesium, for some reason, is just makes the cramps worse. I tried other anti cramp meds out there and its not working. Just wanted to find out if it is safe to take high dosages of Potassium for now and if it will aggravate the Clusters or will it be safe. Thanks

Stijn, I appreciate your non-defensive responses to questions! Language like this "The reason your CH cycle started..." kind of triggers me (in contrast to maybe something more like, "My hypothesis for the reason your CH cycle started...."). But, like I say, I admire your openness in interactions, and I admire the effort you are making to learn whether your theories hold true.

Yes, the Sun changes sidereal signs pretty much every year on the same day. I don't have all the answers to your questions, as I'm only at the beginning of this research. I'm still looking into what causes or prevents the larger cycles, why one year yes, and the other no, but I hardly made any progress there. However, I found that many peaks occur when the Sun changes signs. Also, often cycles start then. Another way to convince yourself is keeping a detailed record of peaks and then comparing it to solar ingresses by using an ephemeris. If you wish to know more, best take a look the pdf attached, as it includes my findings up till now. For your convenience, I've listed the solar ingresses for the rest of the year.

So, he is talking about cycles in 2018, 2020, and 2022. Does the sun change signs every year on August 17? If so, while that might "explain" those past cycles (or at least the 2020 and 2022 ones, since he doesn't say the 2018 cycle started on that day, and he probably would have mentioned that), what "explains" not having cycles at all in 2019 and 2021?

The reason your CH cycle started on August 17 is because on that date, the Sun changes signs (sidereal Cancer to Leo) . (Don't know why it stops on September 1 though.) Check the "Medical Almanac" I prepared for July-December 2025 - pdf attached. Medical Almanac 2025 solar disorders.pdf

Hello I've had the Cluster headaches since around 2016 , then l was not aware of what they were or why. It always affects the right side of my head when the attacks happen . After l was diagnose from my Neurologist , he issued Verapamil at 80 milligrams six times per day. I found taking that many pills was hard on my system , to many side effects. So l was cutting back on Verapamil to find the right mix of pills. My cycles were always later September when they started and end around the first week of February. I would only take the Verapamil when the season started then around late March, and that seem to work for a few years. I would have headaches around late evening always the same time every day. He also issued Sumatriptan 100 mgs and Rizatriptan at 10 mgs as well to stop the pain when they peaked 10/10. When the headache ended l would fall asleep fast when taking triptan cocktails of pills but they worked. So for the first 5 or 6 years or so they were like clock work they start up again late fall and then early February Then one year l hardly had any at all. Didn't know why either. My neurologist gave me a prescription for the shot in the back of my neck had it twice , but it did not work. A couple of years back l got on oxygen and l found that it really helps , it stops them before they build, hence no more sumatriptan or Rizatriptan to kill the pain . I still get shadows at times that linger , but now I take Verapamil 80mgs three times a day and that keeps away for good. I don`t get off the Verapamil at all now. I live in the western part of Canada I am a senior now ,and also male, but when they started I was in my late fifties. We travel a lot and I find that the atmospheric pressure has a lot do with headaches as well. I hope this helps as you are not alone with this condition. Hawk

In the tradition of the old “Almanac” makers, I thought it might be nice to create a “Medical Almanac” that looks at the sensitive times for (cluster)headaches. As a first publication, it starts modestly, and covers only the second half of 2025 (July-December). It shares the research and the theory behind it and marks the collective dates when one may - or may not - experience peaks in intensity. If you’re interested, whether to check if there’s any corresondence with your own CH peaks, or just curious to see what the hell this is all about, get in touch by pm and I’ll send you a pdf copy (free).