Hey everyone - thanks for this wonderful resource. I'd like to share with people my background and symptoms and get people's advice.

I had my first migraine when I was 13. Since then, up until age 17, I had periodic migraines -- perhaps one every 1-2 months. At age 17, when I was a senior in high school, I started getting cluster headaches. Starting about 3PM, I would get very drowsy and foggy, and this would culminate into a cluster headache around 4-5PM, unless I took a nap.

Dealt with cluster headaches almost daily until a few years ago ( now 31 ). Couple things started happening. First, I read Dr. John Sarno's Healing Back Pain. Realized I had some anger and self-esteem issues, and I worked on them, and this reduced the frequency of cluster headaches. Sarno's theory is that when we get angry, our fight-or-flight system gets activated -- our muscles get ready to move. That's fine when you're a kid, but as an adult, you can no longer hit people, throw things, or call people names. So, you learn to control yourself. This means that the brain arrests the muscles gearing up through vasoconstriction. People who have repressed anger, which are typically motivated, type-A people, but very calm and in control, frequently suffer back pain and headaches. So says the good Dr. Sarno.

Second, stopped eating meat for lunch. This reduced drowsiness in the afternoon and reduced cluster headaches.

Third, started doing serious stretching morning and night. My 'go-to' stretch is sitting down, putting my legs straight out, and leaning forward. Count relaxedly to 300. I actually don't stretch at all, but simply relax and let my muscles relax. My hamstrings are extremely taut, and so is my lower back. After about 100, my hamstrings start to relax, and then after 200, my lower back starts to relax. By 300, I usually have my shoulders to my knees. Doing stretches like this keep me good for at least an hour.

Also, I drink a lot of caffeine. This helps a lot with headaches.

So, daily clusters are gone, but they still might come 1-2x a week on a bad week. Otherwise I have various back tensions and head pain.

Beer is sometimes a trigger; colored alcohol ( whiskey etc ) always is. Whiskey is good for a migraine the next day.

My mom gets migraines and near-cluster headaches, too; she's just dealt with them. Her father, a farmer, had back problems to the point where they sometimes had to come pick him up in a field when he didn't come home, and take him to the hospital for traction. So, I figure there's a genetic component, or perhaps a pattern of feelign repression that I inherited

Also I had an inadvertent cluster-busting experience several years ago. A friend and I drank some tea, and I noticed that my typical back pain and headache tension was gone. I thought this was a mis-perception of reality, and not real relief, so I tucked that experience away. After reading this website and the cluster-busting website, maybe that isn't so.

I have seen a doctor who started me on depakote, but it's too expensive, and I don't like the side-effects. Other doctors didn't take this seriously.

So, my current thought is this:

1. try some other OTC Drugs, like taurine and kudzu.

2. Do some additional therapy -- now that I'm more in touch with my feelings, I realize I'm still a very angry person -- but therapy's expensive. Have people had relief with this method?

3. Do some more muscular-type work, like regular massage therapy, or physical therapy. I can relief cluster headache pain if I can lean forward and fully extend my lower back. I do this when I have an attack at night. It was a massage therapist who originally let me know that I had tight hamstrings. Have people had success with this?

4. Perhaps try cluster-busting, but worried about the law, passing drug tests, etc.

What do you think? I noticed that most people on this board, from what I've read so far, seem to go for medical/chemical therapy ( oxygen, medication, cluster-busting ), and not so much muscle work or therapy. Are those types of treatments unheard of?

ClusterChuck wrote on Jun 15^th, 2009 at 11:27pm:


Chuck, good point. I'd used the term cluster headache, because it wasn't a migraine, and that was the only other debilitating type of headache that I was aware of. I wasn't aware of the name until some 4-5 years ago.

What other types of headaches are out there, and how can I find out about them? I've kind of maxed out my insurance re-imbursement for the year, so I want to do a little research on my own before I get some savings up and start going to doctors again.

When I say cluster headache, what I meant is a very intense, "bright", "high frequency" headache ( contrasting to a migraine which to me is dull and throbbing ), which lasts 20-60 minutes. Feels primarily behind or around my left eye, causing my eye and sometimes my jaw to swell. When I do have it, it's so intense that I can't do anything but think about the headache. Unlike a migraine, external stimulus ( lights, sounds ) aren't any bother; but I usually want fresh air. I can talk and move around, unlike a migraine, where I need to be immobile. I always contrasted a migraine with a cluster; didn't know there were other types, except for the more pedestrian headaches that people can still function with. When I was in the peak of experiencing them, in my early 20s at University, I would frequently think suicidal thoughts during the experience, because they were so intense. ( I don't think about suicide with migraine -- I just want to stay still and do nothing ). It seemed to me that that was a symptom of a cluster headache, from what I gleaned from the wikipedia page.

Does this sound like a cluster headache? When I see those videos of that guy curling up and wimpering, I can relate to that.

So I have the type I described above, sometimes migraines, and the rest of the time, just plain muscle tension and headache.

Doing some more reading on cluster headaches, people talk about a 'cycle' of weeks or month. Well, if daily is a cycle, I had that at one point. But I don't have periods of episodes like other people seem to have. So I guess that would be evidence against the cluster hypothesis.

Hi Hazel,

Hope you are still around.  I would echo Chuck's post.  I'm glad you have found some relief form your pain, but it doesn't sound a lot like cluster to me.  From your second description it does sound a little more like CH.  Check out the cluster traits button on the left, as well as the cluster quiz.  These are not for diagnosis by any means, but may point you in the right direction.  I sincerely hope it is not cluster, and hope you are able to get a firm grip on handling them. 

Jerry

Thanks for everyone who has responded to me.

When I described my symptoms originally in this post, I avoided describing what I termed a cluster headache, thinking that everyone here was "in the know", and there was no need to explain to everyone on a cluster headache board what a cluster headache was. I was more interested in describing my non-cluster symptoms and findings that helped alleviate my symptoms. Really what I was looking for was someone who might say "Yeah, your story sounds a lot like mine, what really worked for me was X".

But I may not have a cluster headache at all. It sounds more like a muscular sketal headache that can have cluster-like symptoms at times.

If I had posted some ten years ago, I probably would have described a classic cluster headache, but without a cycle of intermittancy. I would have said that daily, or at least 4-5 times a week, I have a headache that is very intense, seemingly localized inside of my head, very "bright", "high-frequency", painful, stabbing, and intense. Sometimes, if it was very strong, my right eye would swell up, and sometimes my gums on that same side. It would last 10 minutes to 1/2 hour. It was very painful, but not debilitating, like a migraine. My biggest urge would be to somehow escape or flee -- but of course you can escape your own body -- so I would pace or something like that, if I could.  It was so intense, the whole outside world would become irrelevant. Contrast that to a migraine, where all I want to do is lie perfectly still in a dark room, with no sensation or stimulation.

That's what I would have said 10 years ago. Since that time my subjective experience has been that I have "moved" the pain. When I had an "intense" headache, I found that by pressing on my head, stretching my neck, or pressing my shoulders, I could "short circuit" the pain, for the duration of the stretch. I would stretch and massage my head, neck, and shoulders. Over the years, I slowly moved down my back, wherever I encountered a tense muscle group ( I had no plan in doing this, I just started at my head and worked my way down ). Finally I'm at my lumbar region and hamstrings.

I was also a person who was very dissociated from my body and emotions. I was unaware of my body posture and my emotional states on a day-to-day basis. Things kind of came to a head and I was very depressed and I sought counseling. I didn't stick with the counseling for very long, but what stuck with me was the emotional introspection. I presented myself to the counselor as someone who really didn't have emotions, like a Mr. Spock. However, I noticed when I really got talking, it would be all about my emotions. I had a lot of painful, intense emotions, and I didn't have good tools to deal with them, so I just numbed them out, and was unaware of how they affected me.

That began the process of me re-connecting with my emotions, and see that they actually did play a role in the headaches I was experiencing. This is also where Sarno comes in.

I used to get so angry at people, especially at work, that it would cause me headaches. Now I've learned to recognize those feeling of anger, and to some extent why they arise, and I can avoid it.

There were a few instances where I was so angry that I was up all night, unable to sleep, and the next day I had terrible headaches. Now, when an event occurs that would have gotten me that angry ( and trust me, several 'worse' things have happened ) I'm not perturbed so much, so I actually get a decent night's sleep. And I usually find out the next day that being angry would have done absolutely nothing to change the situation, except given me headaches.

Anywho, it's not a panacea, and I still have problems, especially when I'm under stress or don't get enough sleep.

So, long story long, it had seemed to me that going the more emotional-body route had been more fruitful to me than a medication. I guess what I was also looking for something like "Counseling can only bring you so far, the rest you'll have to zap with drugs."