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Hi everyone, just wanted to say hello. I've been reading this forum for a long time, as has my sister, and figured I'd pop in. CH has unfortunately been a staple in my family. My mother had them, my two older sisters, and myself, I just turned 40. One sister has gotten past the CH after her 2nd child, and my other sister had success with Botox. These things have flat out ruined life for me up to this point. Between dr hopping and multiple scans and medical bills, it has been tough. Nasal sprays and injections were the only way out for years. Oxygen helped a little. I've seen every neurologist around me and never had much success. A few years ago, I started using prednisone to get breaks when I was at my breaking point. But that stuff rips you apart after a while. I've lost friends, hopeful relationships, and countless years of my life because of these things. I was also diagnosed with trigeminal neuralgia which just added more confusion. I've always poked into this page for a little bit of hope when I thought I couldn't take it anymore, and it always helped me out seeing success stories. I'm now dating someone who understands what we go through and has been an absolute rock for me. I'm fortunate. Last week the dr prescribed verapamil at 240MG day, which I tried years ago, and it didn't work, and finally, I got some relief. I didn't expect it to work, but it worked immediately which I thought was odd. But I'll take it.. I've looked over this page for years, tried every medicine there is, and was really losing hope, but I just wanted to say thank you. There are a lot of people out there who read but don't chime in but benefit greatly from the topics discussed here. Sometimes I think just reading about other people in the same boat as you can be tremendously helpful. but currently I'm on day 4 without a headache, which is INCREDIBLE for me. I feel like this page is full of unsung heroes. Thank you so much everyone.

So strange to wake up and read this after having bad dreams all night about being in a house infested with big ugly yellow spiders (by product of all the time I've spent in the greenhouse latley i think). In my dream I was trying to vacuum them up, in hindsight I guess I should have been getting my snack on....

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

I'm with you bej, spiders for breakfast dinner and tea from know on!!!!!!

I guess I've just personally been clueless and totally missing out - gonna head straight to the garage and rummage behind boxes and stuff in hopes of making up for lost time.

This is unrelated, except that taurine is involved. I post it here only because I just read it tonight, and thought it was fascinating, and taurine gives me the excuse. From What It's Like to be a Bird (great book!): "Chickadees mostly bring caterpillars to their newly hatched nestlings (they can collect over a thousand in a day), but for the first week or so after hatching the adults make special efforts to seek out spiders to feed their young. Spiders provide the nutrient taurine, which is essential for brain development and other functions."

...personal experience for me was 1500 mg taurine minimum to be effective (as energy drink ingredient...never tried as a supplement) best jon

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

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

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...

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!!

Just checking in. - 5 years cluster free after being chronic 8-10 daily and seconds away from ending it all. This site saved my life and I'm grateful. - took 17 tries of MM dosing every 5 days to finally get relief. ( learned about dosing here) -low histamine diet . I literally don't eat any foods with high histamines. Stopped eating meat as well. -stopped drinking alcohol (major trigger) - lost a lot of weight Initially but I have found foods I can eat to maintain a healthy diet -still maintenance dose at least 1-2 times a month. -if my d3 gets low or I don't maintenance dose I feel signs of pain. (Sickness, allergy season) - I realize food is a major trigger so I'm very cautious and eat very limited items which can be very very difficult at times but I'll rather eat blackberries for example then have a cluster any day. other triggers include - smoke of any kind (this sucks because everyone smokes and this includes hookah smoke) - extreme heat overall, the d3 regimen, avoiding histamines, dosing consistently and avoiding triggers have helped me be cluster free. Ironically, MM helped me with bipolar disorder. I stopped taking all of my bipolar meds. They're truly magic. Am I cured, ABSOLUTELY NOT but am I able to live a normal pain free life yes. At times I am very isolated from the world as I fear being triggered which sometimes is difficult but the fact I can be father to my kids is more important . Clusters have taught me to appreciate everything. Truly living between the headaches. I don't take a day for granted and wanted to send hope to anyone who may need it. -

People! Your worlds are way too small. Cooking Tarantula with Unique Style and Delicious Eating | Cooking Special Insects

Wait . . . You mean everyone doesn't already do that?

Here's someone talking about a dose of 2000mg taurine to abort attacks. Taurine to stop onset of Cluster Headache - General Board - ClusterBusters It's hard to tell how much taurine is in a 5-Hour Energy shot, but one place lists it as roughly 480mg. An 8-ounce Red Bull is said to have 1000mg of taurine. This is another discussion of taurine: Taurine Supplements - General Board - ClusterBusters If you put taurine into the search bar at the top right of any page, you'll see quite a few entries, of which some might be helpful, although most don't mention specific dosages.

Glad you found some relief! Ain't Life Grand!

Welcome to the community and congrats on finding some relief!!

I figured as much DD. I stay as far away from Facebook as much as humanly possible, so my knowledge of goings on there is very limited.

Thank you very much for all the advice

Contact anna@clusterbusters.org for Cluster Buddy questions.

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

Basic finding: Oral steroids generally more effective than occipital nerve injection of steroids as transitional treatments. Half or fewer of the subjects received full temporary relief of symptoms with either method (50.6% with oral prednisone, 36% with injections). https://www.docguide.com/greater-occipital-nerve-injection-versus-oral-steroids-short-term-prophylaxis-cluster-headache-retro?tsid=5 OBJECTIVE To investigate our experience with oral steroid and greater occipital nerve (GON) injection with steroid as transitional treatments for cluster headache. BACKGROUND Cluster headache is a primary headache disorder characterized by multiple episodes of intense unilateral pain with autonomic features. During cluster headache attacks, transitional therapies are useful while prophylactic dosages are initiated or increased. There are limited data comparing the efficacy of oral versus injected transitional treatments. METHODS We retrospectively reviewed charts for patients evaluated with cluster headache at our center and captured episodes of transitional therapy utilized from 1995 to 2014. Treatment benefit was categorized into complete, partial, or no response. RESULTS Forty-three patients received transitional therapy over a total of 151 encounters, of which 140 were available for analysis. Encounters featured oral steroids (81, 57.9%) and GON injection (59, 42.1%). Of the 40 patients with treatment response data available, 24 patients received only one type of transitional therapy and 16 patients received both therapies. More encounters featuring oral steroids versus GON injections led to at least a partial response (82.7% vs 64.4%) and to a lesser extent a complete response (50.6% vs 35.6%). Among 16 patients treated with both therapies, 8 (50%) responded to both and 6 (37.5%) responded only to oral steroids. CONCLUSIONS Our single-center, retrospective data suggest the majority of patients with cluster headache responded to both prednisone and GON injections for transitional treatment, with a higher response to oral steroids. Our results may inform study design for a randomized trial, which is warranted.

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!!

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:

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

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.

I've been to a few new dentists/oral surgeons lately. They give me a big form to fill out asking whether I now have or have ever had any of a whole lot of medical conditions. Of course, CH is not on the list. I have been urging them to add it, or ask about it, since they could save people a lot of misery by not using epinephrine with patients who have CH. Will they do that? Probably not. But unlike virtually all of the conditions that the form does ask about, knowing that a patient has CH could actually matter. Just recommending that maybe you do the same with your existing dentist or any new ones.

Help us share cluster headache facts in honor of Cluster Headache Awareness Day. Let’s continue to advocate and educate others about this debilitating neurological disease. Together we are stronger! Please also join Clusterbusters board and staff this Sunday, March 23 at 12pm ET for an informal chat. Register for free event: https://conta.cc/4kNE20G

We are coming from New Zealand. We intend to do the same or after the conference. It sure would be good to hear of any must see things in Texas! Look forward to meeting ya’ll.

Hi Chrissy, a cycle with unexpected changes in what had previously been consistent, reliable behavior of the attacks, such as the time of day they strike, duration, how many attacks per day, etc., is a phenomenon I've seen reported aplenty, and I've experienced this myself. Just when a pattern has been seemingly cemented into place, stuff will suddenly out of nowhere get all switched up. Long remissions after many years with CH is common enough too. Many get caught off guard when the CH does return following an extended remission, having believed their CH had completely burnt out.

If the CBD ever lets you down and you start having attacks again, please check back in here. Some of what you say above is a little bit inaccurate, and people here will be able to give you some guidance about highly effective preventives and abortives that you can use while dosing with psychedelics (or on their own). But for now, may your CH-free life continue forever!!

I very much appreciate this report, and as you say, it probably couldn't hurt for people to give it a try. It's wonderful that you have experienced this relief! I will say that you are far from the first person who has reported here on trying CBD, and some have indeed reported good results -- though not a "cure," which is not a word we use here lightly, and surely not until at least a couple of years have gone by. If you (or anyone else reading here) want to see past reports related to CBD, just put CBD in the search bar located at the top of each page (here's an example: https://clusterbusters.org/forums/topic/5581-cbd-i-know-i-know-but-bear-with-me/#comment-56361). Of course, it is possible that through your research you might have hit on just the right oil and/or just the right dosage and/or who-knows-what other "just right" thing that gets it all aligned. If you don't mind, I have a few questions/requests: Two questions here: (1) Did you continue dosing with shrooms? (2) Would you point me to one of those videos you mention, making that specific recommendation ("small micro dosages of 0.4 grams every 3 to 4 days")? As the first site specifically created to encourage/help people to use psychedelic substances to treat CH, we try to keep track of what people are saying out there about how to do it, and I have not seen videos making this recommendation (which is different from what we have learned here about the best way of treating CH with psychedelics). As people here know, I like to dig into the research, so I have the same request: Would you be kind enough to point me to one of the studies you found showing this deficiency in people with CH? I have tried googling, and I have found research about hormones lacked by people with CH (one study, for example, says "CH often show accompanying neuro-endocrinological changes such as a blunted circadian rhythmicity of hypothalamically regulated hormones including testosterone, cortisol, growth hormone, thyroid-stimulating hormone, prolactin, melatonin, follicle-stimulating hormone, and luteinizing hormone..."), but I haven't located anything about endocannabinoids and CH.

Hi @Sumari, sorry I don't know the availability status of imigran injections. If your dad has any left, and if they are 6 mg, he can actually get 3 aborts, instead of just one, from one syringe, with the extending imitex tip successfully used by legions of clusterheads for a good couple decades now. I imagine it is the only prescription medicine that has helped so far, but non-pharmaceutical approaches have been found to be more effective, with high success rates, as seen at the blue New Users - Please Read Here First banner at the top of the page ^^^^. Also if 100% oxygen at a high flow rate is at all available, it is a non-toxic abortive that can be an effective replacement for imigran in most instances.

And/or . . . see if you can get sumatriptan in vials, and syringes, so you can self-measure. The 6mg in the autoinjector is way more than you need--2mg or 3mg is all that's needed. There's also the 3mg Zembrace (in the US) injectable sumatriptan.

My cycle has been ramping up faster than usual as well. On week four and going through week eight BS. Yeah, the first couple weeks are a walk in the park for me as well.

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

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!