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A Way Out

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  1. Speaking from a scientific standpoint, it seems early to say that CH is caused by the hypothalamus, though it's clear the hypothalamus is involved in some fashion. From a treatment standpoint, I'm exceedingly confident that treating trigger points in the neck and shoulders is an effective remedy for CH, in some cases. And I'd give pretty good odds that it's an effective remedy in most, even all. Unfortunately, there's a dearth of research in this area, despite excellent preliminary findings. On the other hand. It's a treatment that's available for most sufferers. Find the trigger points in you neck and shoulders that, when pushed hard, create sensations of pain behind the eye, in the jaw, and at the temple. Then massage those areas thoroughly for a couple weeks while taking care of posture and actively relaxing. Whether it works or not, report back for the rest of the CH sufferers.
  2. No, it appears that there was no further research. The NIH should be funding this kind of study, because the preliminary evidence suggests trigger points are a major factor and treatment of trigger points is very effective. But it appears they're not, or the researchers lost interest. Most of the large studies are funded by pharma/device manufacturer cash, for obvious reasons. Even then, treatment for something that effects a small number of people, like CH, is difficult to fund. The best bet is through foundations like Cluster Busters. https://www.frontiersin.org/articles/10.3389/fneur.2018.00254/full
  3. Hi All, In the past few weeks, I've been doing a lot of renovations, and the fall is here, and I've started getting cluster headaches again. But this time I only had one full-on blown headache, and it was a 1 on the 1-10 scale of cluster headaches. I've had shadows 10 or 15 times, but I wouldn't call them full blown headaches. The frequency and intensity of the shadows has been decreasing, and they're almost gone after 2 weeks. So I'd like to share how I've come to basically eliminate cluster headaches from my life. I'm quite confident that knots in the neck are the primary cause of the cluster headache. I use a trigger point cane massager to relieve the knots, and this has prevented cluster headache for a couple years. I also practice an active form of relaxing the muscles in the next and back, and work to preserve go is standing and sitting posture. If you're just starting a cycle, the trigger-point massage can provoke shadow-type cluster headaches, but rarely full-blown. It is not an effective treatment IN THE MIDST of a cluster headache, but it doesn't do any harm and the pain couldn't be much worse, anyway. I discovered this relationship after 20 years of cluster headaches, with a 2 to 3 month cycle coming every 2 or 3 years. Many people experience knots in the neck during a cluster cycle, but I'm quite confident that everyone experiencing cluster headaches has a knot in their neck, and that the know precedes the headaches. Here's a study backing up my claim, but I encourage everyone here to get a trigger point massage stick, practice relaxation and self-care, and find out if I'm right for themselves. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2631448/
  4. A Way Out

    Pain down neck and into shoulders

    I'm quite confident that knots in the neck are the primary cause of the cluster headache. I use a trigger point cane massager to relive the knots, and this has prevented cluster headache for a couple years. If you're just starting a cycle, it can provoke shadow-type cluster headaches, but rarely full-blown. It is not an effective treatment IN THE MIDST of a cluster headache, but it doesn't do any harm and the pain couldn't be much worse, anyway. I discovered this relationship after 20 years of cluster headaches, with a cycle every 2 or 3 years. Many people experience knots in the neck during a cluster cycle, but I'm quite confident that everyone experiencing cluster headaches has a knot in their neck, and that the know precedes the headaches. Here's a study backing up my claim, but I encourage everyone here to get a trigger point massage stick, practice relaxation and self-care, and find out if I'm right for themselves. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2631448/
  5. A Way Out

    cluster with aura!

    I really think the secret to cluster headaches is dealing with what I believe is the underlying cause -- severe muscular tension in the neck. I'm confident that massage, moderate upper body exercise with rowing machines, and constant work on relaxing the shoulders and neck will likely stop the cluster headaches.
  6. A Way Out

    Remedy?

    Hey all, This is my second post. I've had cluster headaches for about 20 years, but they usually only come at times of high stress. I currently think that the headaches are caused by extreme muscular tension in the neck, and I'd like to know whether or not other sufferers have similar tension? Do you have a knot in the muscles of your neck, hard as a rock, on the side that you get the cluster headaches? It might be so tense that you can't tell the difference between the muscle and bone, and even if you press on it, it doesn't really hurt. Please answer if you do, or if you don't, as either case is useful to know more. If it turns out that cluster headaches are caused by muscular tension, it means there may be a real remedy! Practice at consistent relaxation, massage, exercise, and decrease in stimulants may be enough. Thanks!
  7. A Way Out

    cluster with aura!

    Fascinating -- this definitely seems related to my muscular tension hypothesis. Do you have an incredibly tense muscular knot in your neck, half-way between the shoulder and skull, on the side that you get the cluster headaches?
  8. A Way Out

    Causal Hypothesis

    No, I haven't been formally diagnosed. I'm quite confident, though, that they're cluster headaches. It's always on one side, it feels like someone is jabbing a spike repeatedly into one eye and temple, with that nostril getting both clogged up and a bit runny and that eye turning bright red and watering. When they come, they almost always come at the same time of day for a period of weeks. I always thought they were migraines until I looked up the symptoms I was having and was pointed directly to cluster headaches. The fabulous demon image on Wikipedia perfectly represents my experience. I think there are two reasons I was able to meditate on it as much as I was: First, I was a very strong meditator before I started meditating on the cluster headaches. So I had already spent more than a year meditating for more than an hour each day, and was still doing frequent meditation. Second, I wasn't able to meditate throughout the cluster headache. But for me there is an ascent period where I'm not completely incapacitated. Often there are subtle feelings at first, and those turn into bad, but not mind-destroying bad, headaches after 10-20 minutes. That lasts another 10-20 minutes, and then it becomes full-blown and all I can do is rock and moan and clutch my head. That usually lasts between 10 and 30 minutes. When they finish, I don't have any residual pain. I actually feel really good and relaxed, like I just finished moderate exercise. I can meditate through the initial stuff, and a couple minutes into the full-blown headache. Notice, I don't recommend meditation for cluster headaches. That's not because I don't think it's very helpful, but because I think it's too hard to be useful advice for most people. If I were to recommend meditation, it would not be during the cluster headache, it would be a short session each day when you feel good, to practice deep, alert relaxation and attention to the body. But I think the meditation helped me to reach what I believe is a correct conclusion about the cause of cluster headaches. Do you have an incredibly tight knot of muscle in your neck on the side where the headaches occur?
  9. A Way Out

    Causal Hypothesis

    Hi All, this is my first post, but I've spent a lot of time on the site reading posts. It's a great community, thanks so much! So here's my hypothesis: I'm convinced that cluster headaches are caused by extreme muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. Here's how we can start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Probably in the middle of the neck, between the shoulders and the skull. Here's my story: I've had very bad headaches since I was young, and started having cluster headaches when I was 19,in the summer before I started college. Twice a day, 3pm and 8pm,incapacitating pain in the eye-temple. I went to a chiropractor who popped something in my skull,and did a couple other things, and I felt blood flow into those area, and they stopped. I thought it was a one time thing. Then, after college, in the weeks after graduation, I started getting them again. Twice a day, same deal, etc. When I went back home, the old chiropractor had retired and the new guy was a quack. Fortunately, the horrible headaches went away after a few weeks, on their own. I started exercising regularly, especially my shoulders and neck, due to an injury, and I started mediating regularly. No more cluster headaches for about 10 years. But I get married and stop exercising and meditating so much. I'm about to start law school, and they come back again, lasting this time for a couple months. This is when I look the symptoms up online and discover that they are cluster headaches, and that there are other people who get them. No doubt, all the typical symptoms (ice pick in the eye and temple, flush, same times each day, watery eye and stuffed/runny nose on side of headache, etc). I'm relieved not to be alone, but also terrified that sometimes the cycle doesn't stop, it repeats indefinitely. They're going on for months, and I'm getting desperate. But I noticed that I keep getting them at times of extended stress. So I start looking at other things related to stress, and I start to meditate when they begin to come on. I can't meditate through the peak, it's just to much, but I can meditate through all the ascent. What I start to notice is that the pain isn't really coming from the eye-temple. It's coming from a hard muscular knot in my neck, on the same side as the headache. I can actually keep all the spasming-throbing right there in the neck until the peak of the headache when I lose focus and it seems almost like the spasming-throbbing in my neck is mirrored as incredible throbbing sharp pain in the eye-temple. Here's what I do: 1) get a couple deep tissue/trigger point massages. 2) Make a point to relax my neck and shoulders throughout the day. 3) Exercise the neck and shoulders at least twice a week with pullups and rowing-type exercises. 4) reduce my coffee consumption to one cup a day. 5) Also, I grind my teeth in my sleep. So I start making sure that I wear a mouthguard at night. 6) when I feel one coming on, at the very beginning, I try to actively attend to the neck tension and release it. And it seems to work, lessening the intensity after a few days and eliminating the clusters after about 10 days. I get them again when I'm studying for the bar, but now I can handle them and they only last a week or so. And I get them again last month, under pressure with fundraising for the business I'm building with a partner. But this time I start trying to relax, get a massage, reduce coffee, start exercising again, as soon as they start. Somehow they never develop into full-blown, rocking-moaning, stabbing-throbbing pain, except once. So here's my hypothesis again: cluster headaches are caused by muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. And again, I hope you'll help me start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Excited to hear what you find!
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