All Activity

My cycle is just starting. only Kip 4 atm, but frequency seems to be ramping up faster than last time. Hang in there!

Sign up for Clusterbusters 10th Annual #CureForCluster Virtual 5k by April 15th for early bird pricing and, for U.S. residents purchasing a race bag, to ensure your order arrives by race day. Shipped Race Bags will only be available for purchase by U.S. residents as an add-on. We cannot ship outside the U.S. Our virtual 5k can be run or walked at any location, so you can join us from anywhere in the world. Registration is open through June 6th. This year, we have partnered with Alliance for Headache Disorders Advocacy (AHDA) to support Headache on the Hill: A Visual Installation representing all headache disorders while our event continues to raise awareness and funds for cluster headache. For info and to register: https://runsignup.com/cureforcluster5k

I could use a buddy these days. In the middle of a banger cycle. Only sleeping a cup hours per day since falling asleep triggers more hits. Had a 3 hour attack last night! Stay strong warriors!

During my last cluster I applied for the cluster buddy program. I hadn't seen a reply until I checked this week while starting up a new cycle. I was wondering what everyone else's experience has been with this program. I'm back to working. I'm working more and making more than ever. A coworker left a leaking bottle of PVC primer in the cab of a work truck that apparently set off the cluster i'm hoping I just busted last night. But I'm hoping to build my own at home and hoc oxygen system and get myself back into insurance. Since my last visit I've started trying to eat healthier, started taking GNC MEGAMEN advanced test booster and micronized creatine, put on ~12+ kg in healthy weight, and over all I think I'm in much better health than I was during my last cluster. I'll probably be active seasonally, closer to my cycles and what not. This last year or two the attacks have been getting harsher, lasting longer, with shorter remission periods between clusters so there's a chance I'll be online more and more as time goes on. I've been informed that there may be a meet up in Dallas at some point this year. That's some 6 hours away one way so I'm not sure I'll be able to make it but I'd love to socialize more with people who haveore experience dealing with this miserable issue. Hope you're all healthy and well <3 NeitherHere

I can't imagine that anyone here will be able to help you find Imigran in Namibia, but maybe I'm wrong. If you do get them, be sure that you/your dad split them so he gets more use from them: Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters The nasal spray, called Zomig, is similarly effective. There is also a sumatriptan nasal spray. This website says you can get that nasal spray "no questions asked." Is that true? Is the stuff reliable? Will they ship to you? I don't know the answers to any of those. Sumatriptan - Nasal Spray Oxygen is very effective at stopping attacks. Can you get that? Could you set up a system using welding oxygen? Notes about welding O2 - ClusterBuster Files - ClusterBusters DMT has been found to be a very effective abortive. Do you have any chance of getting (or making) that? DMT experiences and advice - Theory & Implementation - ClusterBusters

Still desperate for anything similar

Please help me find imigran injections or similar for cluster headaches

Tommy', glad you got that answer from Jeebs, which is the same as what I would have said -- probably not, but I'm no expert -- and he actually did some work on your behalf, which I didn't. Hope it all goes well!!

I'm afraid this is so common, cycle changing when you think you have it sussed, the beast loves messing with your head

Unfortunately the seeds did not bust my cycle. Working on getting some MM and a DMT pen but got caught with my pants down on the war kit and the money situation is in shambles since I had to miss some work. Yeah, mine started almost three weeks ago with a headache after drinking some beers and has ramped up to a full cycle. Sitting on about week three of 12 if I can't get a good bust in there. GL!

Thanks, I’ll read through the posts on that link!

in the same boat. had some weird single hits a month ago. brushed them off although i kind of suspected i'm going to have an episode again. busted a couple of days ago but as it seems it didn't do the trick. got hit with 4 nasty hits at night this thursday. i think daylight saving time is what gave the last push. upping my vitd3 as we speak and hoping it will work. stay strong!

Hey everyone. Been awhile since i’ve been on here. I hope everyone is well and in good health. The last time i was on here, I made some pretty anxious and depression-ridden topics about how i thought my life was over.. boy was i wrong. I’m posting this to further support the tools and methods that have been written about on these forums.. and to possibly give hope to those that feel lost, as I once did. The last 4 years have been some of the most eye-opening years of my life. I’ve made drastic health conscious decisions that aided in my relatively pain-free years. I’ve tried “busting” and diet changes. Both with great success. I listened to my body and found that a combination of Vitamin D3, magnesium glycinate and omega 3 supplements help keep my headaches at low pain levels or at bay. An (almost) gluten free, no msg or additive, low histamine, anti-inflammatory diet helps maintain that low inflammation in my body. Sleeping with my head slightly elevated and neck supported also helps me keep the blood pressure from building. I also found that getting sick with a cold/flu will immediately bring a cycle on. I assume because of the sudden onset of inflammation in the body. Especially in the face/sinuses. Taking valuable information given by Pete Batcheller, (don’t know his @ at the moment, sorry!) the cycles have been very minimal in times where they should have been grave and unforgiving. I’ve learned to accept the fact that I may have clusters for the rest of my life. I’m 24 years old, and for the first time in the 16 years i’ve had clusters, I’m finally OK with it. Where there’s a will, there’s a way. But it’s important to keep in mind that pain free responses will not happen over night. Not every piece of information helped me. Some worked, some didn’t. Having a strong support system of people helped immensely. I can partially attribute my positive attitude to one of the “busting” methods that we know about. These headaches made me appreciate the little things in life, which in turn, makes life much more beautiful. Music sounds heavenly, sights are awe inspiring, love for those around me increase. I can live my life knowing I have the tools and resources to stop a cycle, should it come back. I also learned that hardships and trying times await each and every one of us, but will never make life not worth living to the absolute best of our abilities. The human spirit is truly indomitable. I extend my love and thoughts to everyone here! I’ll be sure to keep everyone updated as I grow older

My current belief on whether nerve block injections would have much likelihood of being a blocker on busting, is no, probably not a blocker. Full disclosure: I'm not exactly well researched on this topic. It did come up previously in this thread that you may find pertinent enough to peruse:

I'm in the exact same boat. Maybe a week ahead of you. The attacks when I fall asleep are ramping up. Had four last night.

Hey, just wondering if the nerve block injections act as a blocker on busting? I’m due to have one on Tuesday but don’t want it interfering with my next bust due on Monday. Thanks

I’m currently in “headache season” now and this is similar to my experience. I went almost two years pain free. My first headache was last week and I’ve had 3 moderate pain headaches and 1 severe last night - always at 11pm or after, waking me up in the middle of the night and they last between 30 min and 1 hr. I’m sorry yours are back after 5 years. It’s awful.

I have both UC & I am CCH since 2012 - ask me any questions you have. And yes I have found stuff that helps. Nothing makes them go entirely away, but I have found ways to lower the intensity and number of attacks, and manage life with this condition. And my other health issues. Feel free to ask me anything.

You are definitely not alone, I also have a 'weird' migraine/CH co-existence that differs a bit from yours. If I'm in a cluster cycle I will have no migraines, however the final dose of a 3-dose bust will often trigger a migraine. If this happens then 90% of the time it means the bust has worked and my brain has flipped back to migrain mode. I'll then have a few migraines over the following months until CH rears its head again. So in my case it's a bit of flip-flopping, I can only recall one instance over the past 17 years where I had a migraine during a CH cycle. The moral of the story is I guess that both these conditions are pretty complicated and not very well understood, and there is almost certainly some cross-over in causes that leads to our individual circumstances. By accepting our individuality it also opens the mind to expermenting with the different busting regimes/tactics and finding something that works for you if the standard regimes aren't quite working or that may go against current thinking. Good luck with your journey...

thanks everyone, it just helps to hear that these things aren't necessarily outside the range of "normal"! the validation means A LOT, thanks!

You are not the first to report this unfortunately.. As for the duration.... i've had attacks that have lasted upwords to 6-8 hours. Not common, but again not unheard of. Now that we know you are a rt sider (sorry) for this unfortunate experience.. it sounds even more like CH. I'm not a Doctor and have no definitive answers and can't even claim to know "what is what".. I can tell you that shadows are a really unfortunate offspring of CH. This conversation makes me feel like another member @mit12 with both migraine and CH might have some insight? @mit12

I sure am no diagnostic expert, but the fact that your CH-like attacks do respond to oxygen, you feel them behind the one eye, and they are fast ramping makes them sound to me like yep, some CH really could be mixed in there with the migraines.

Hi BoscoPiko, Thanks for your reply, I really do appreciate it! So, all of my "CH" are on the right side, although maybe twice in the last few years I swear I got one on the left.... They tend to start between 2-4am and I either wake up with them, or I wake up and feel fine but then roll over or turn my head and then it starts. Fairly quickly gets worse and up I go to get my oxygen. Pain seems to start on the back of my head near the neck, very pulsatile, and eventually goes behind my eye too. Only autonomic symptom I seem to get is R nose plugs up completely. Oxygen works most of the time. Occasionally I get them during the day, but usually only if I had one the night before. I get some lesser forms during the day sometimes that I am starting to recognize as possible shadows. With the full blown "CH" I have to get up out of bed because any contact with the pillow makes it worse. I find I am best off standing. So I do move around, but I don't feel super restless like it is described. Sometimes I have a little residual neck tension after the oxygen, and that makes me super anxious when I am trying to go back to sleep..... I also get very photophobic, even more so than with the typical migraine. However, I know CH are supposed to last less than 3 hours and mine can last several hours if they are not treated, although that is just from memory because I never don't treat with oxygen or sumatriptan now that I have those options. I sometimes feel like the cluster headache triggers a migraine attack and that the full duration is really 2 headache types. They tend to come in "clusters" although again maybe atypical. I'd say that about every 3 months or so, I will have a week or 2 when I have them 3-5 days/nights per week. Occasionally, I seem to get one or two out of the blue by itself and not in a "cluster". Another atypical thing is that while these are very severe and worse than most of the migraine attacks I get (which may be partially because they ramp up so fast and the migraine usually gives me more time to treat it and is more amenable to treatment), they don't seem as severe as what I hear described for CH. I have not gotten to the point of banging my head on the wall. I have tried oxygen for the more usual migraine attacks I get and it really doesn't do anything. In my reading, it seems that folks that have CH and migraine do have some overlap in their symptoms and a little more atypia. However, it also seems that there is a fair amount of variation in symptoms from one person to another. And I wonder if the neurologists are wanting all the headache classification parameters to be met too strictly for a diagnosis of CH. I know most criteria for any disorder are mostly so that the right candidates are chosen for research purposes, but in real life there are variations on all diagostic themes. So, I guess I wonder if what I am describing sounds like CH to you folks who know what is what. That will help me decide on next steps with ny neurologist.

Well welcome @sanderson. Glad you decided to join us but sorry you needed to. Some of the symptoms you describe do sound a bit like CH. The "don't you dare try to rest attacks" are pretty common amongst us. I didn't notice any mention of unilateral symptoms? I see the comment about the occipital pain which I don't think is as common but definitely not unheard of. The fact that O2 worked for you (and that you have access to it) is great and is something that works for most cluster heads. Although many of us have experienced O2 not working during a full attack so I wouldn't let that rule out the possibility of CH. From my experience with CH, the pain is typically one sided with the daunting and very uncomfortable/uncommon side switch but it's usually always on one side or the other. I am not sure what you have tried to eliminate the occurrence of your pain but I would highly suggest the D3 Reg which you can read all about on here as it has been know to help with various headaches head attack types migraine included. Hope you get some answers and relief soon!!

Hi, Newbie here! I have had migraine since I was 13 or so, which became chronic 12 years ago when I was 49ish. It has not been fun--eventually lost my job and my whole life is changed. Not a new story to all of you. I had a really great neurologist who had CM and was very knowledgeable and helpful. Unfortunately, she retired due to her CM last year. About 4 years ago or maybe a little more, my headaches started changing, or sometimes they did. I kept getting these severe headaches that would wake me up at night that were not as responsive to the migraine meds. Eventually I tried oxygen and it worked! Hooray! However, no one is sure if they are really cluster headaches or some migraine variant. Oxygen doesn't help all my headache attacks, only a subset, which is what I call CH. Or since some of my doctors don't think they are clusters, I call them NPH for Nocturnal Pulsatile Headaches. However, they admit that they have CH features and seem to have some differences from my typical migraines. In addition, I get headaches that seem to be related to superficial nerve pain--mostly occipital, that seem to be worse lately and, again, different than my other headache types. However, all 3 of these headache types have some overlap in symptoms. I am not really sure what I am asking with this post. I guess I am wondering if others with multiple headache types have felt lost like I do and any advice would be appreciated. I do see a headache specialist via telehealth, but no longer have a local neurologist. There are no other headache specialists that are open to new patients in my state (Oregon) and I have tried to get into the Mayo Clinic and they aren't taking new patients either. I know healthcare in our country is screwed up and I am a victim of some of that, as are many folks on this forum. Again, I know that CH is under-researched, under-funded, and that Clusterbusters does more for the CH community than any other entity. So, I thought I would become part of the community and see what I could learn. Thank you!