This post is only intended for those people who, like me suffer from cluster headaches. It was originally posted on my old blog several years ago, I’m re-posting it here.
The Backstory
For about 15 years I have had cluster headaches, however, it took many years before I realized what they were.
They started when I was around 18, when for nearly three months I had intense searing headaches each of about two hours in length every few hours. Following that, subsequent clusters of these headaches —about one to two months in duration— occurred regularly every 3 to 6 months. At that time and for the next few years it was continually misdiagnosed as either an infection or as a normal migraine.
This misdiagnosis story is quite common, and for me, it was particularly frustrating as during this time and for most of my life since I have been traveling, moving from country to country not staying very long in one spot. This meant that at each doctor visit I had to try to explain the history and recall the previous occurrences. To help this process I started tracking this data, I tracked things like the date and time they occurred, where I was, and what I was doing shortly before. I tracked what I took to try to treat it, and what the doctors said. Up until then, I had no idea what it was, and neither did the doctors I visited. Nothing they prescribed could even dull the pain or stop the cluster from taking its course.
I was in Europe when I first heard about cluster headaches. While traveling home on a train, I noticed how someone clenched the side of their head and mentioning to their partner that another "cluster" had just started, I noticed that look of dread, frustration, anger, and pain. I immediately knew what that was, I grabbed my phone and Googled 'cluster headache' and for the next few days I read all there was to read about it.
I took particular interest in the information about treatment and causes, but with great disappointment found nothing concrete. I found some information about how certain foods and substances like nicotine and alcohol triggered the headaches to occur. I also read how these headaches generally lasted until well into someones 50's and how nothing except for the most intense medication could dull the pain.
Being a data analyst, I decided to record anything I could in the hope that I could mine the data to figure out what the cause was, what my triggers were, and what if anything helped.
What I tested.
An example of one of my cluster headache logs
Over the first few years I tried eliminating many of the usual triggers that people had mentioned like cheese, crisps, sodas, chocolate, coffee, nicotine and alcohol. I tested many more out to see what triggered my headaches and I ended up with a rather large list.
I went further and tracked times, dates, locations, seasons, pollen, pollution, and weather conditions, there was some correlation to these and the changes in seasons but nothing concrete. Also, the times of my headaches seemed to track a pattern similar to my eating schedule but again nothing statistically significant, especially after I removed the triggers.
I then read how oxygen therapy helped and how extreme exercise at the start of a headache also helped. Unfortunately because of my constant travels, I could never get a Doctor to prescribe oxygen to me so I tested out the exercise option and found it only occasionally worked.
For 15 years I had done these tests, I tracked the data, tried different medications, diets and treatments, and I slowly started getting some results. I started limiting the tigers from my diet, and cut them totally out the moment I felt a cluster starting. This helped decrease the number of headaches within a cluster and also increased the length of the remission periods between them.
My usual process at the start of a cluster was to stock up with painkillers —even though I knew they would not work— and set up an area in the lounge that I could go to at night so as not to disturb my wife and kids when the headaches came on. I had formed a manageable routine but nothing could dull those moments of absolute agony. It was during my second last cluster that I, through absolute frustration, tried everything all at once: I stopped all intake of anything that even came close to something that could be a trigger and I included a new exercise approach with heavy breathing I wanted to test out., And it worked! However, it was also the scheduled end of that cluster, so I could not confirm if what I did successfully aborted the headaches or if it was just the natural end of the whole cluster.
The breakthrough
Cluster headache log showing successful aborts
The breakthrough came during the next cluster.
A few days before the cluster started, I felt the back of my neck and my right temple start to clench and feel heavy. I immediately cut all triggers from my diet and prepared.
As with all my experiments, I let the first of the headaches take its course so that I could use that as a baseline (I did take pain killers but none of them ever helped so I do not count these as affecting my baseline test). It lasted for 3 hours and was as usual something I would never want to experience again. The next one happened later that day, and this time I ran my exercise test, and it worked, within 15 minutes the headache was aborted, and I felt great! A few hours later, the next one started. however, I was in an early meeting and I could not do my exercise experiment so I had to battle through the headache. Luckily for all my other headaches in this cluster, I was able to start my experiment within 10 to 20 minutes of its start and was able to abort every single one.
What worked:
Triggers: I have limited my intake of triggers, some permanently, some by moderation but all of them during a cluster. This decreased my cluster occurrences from happening every 3 months to only happening every 9 to 12 months and with a 35% decrease in the number of headaches within a cluster.
But the real breakthrough came by combining the above with the exercise I did.
Exercise + Oxygen: In previous experiments, exercise on its own only worked occasionally and only if no triggers were consumed. Additionally, oxygen on its own previously helped dull a headache but I did not have any at hand. So my experiment was to naturally get additional oxygen by incorporate heavy breathing while exercising.
The result was almost instantaneous. I start exercising as quick as I can after the start of a headache, I do any exercises that rapidly increases my heart rate —cardiovascular exercise works best. At this stage, I make sure I breathe heavily through my mouth to get as much oxygen into my system as possible. I maintain this pace for about 10 minutes until the headache stops.
After many years of trial and error, this combination of cutting out triggers from my diet, exercise, and increasing oxygen intake have been the key for me. I hope that this is not only something that works for me but may help someone else too.
What other people have said:
Over the several years since I wrote this post, I’ve been getting many replies saying that this approach has also worked for them (about 80% said it worked for them). About 20% said that it did not work, either because they could not exercise or because some could not exclude triggers from their diet, like coffee and cigarettes. Some of their comments can be found on the old blog post, but you will need to sift through the spam comments to get to them: http://bodohoenen.blogspot.com/2013/10/cluster-headaches-i-think-i-figured-it.html
Some Hacks I’ve discovered
Timing: The timing was quite consistent; If I waited 20 minutes before starting to exercise I would need to exercise for about 20 minutes before it stopped and If I started within 10 minutes I was able to abort it within 10 minutes. If I waited for longer than 35 minutes when it reached its peek I could not abort it no matter how long I exercised. If I breathed through my nose instead of my mouth I had to exercise for about 30% longer and If I ensured I breathed as heavily as I could through my mouth I could reduce the time I needed to exercise.
Diet, Exercize and Oxygen: It is only through the combination of all three of these —cutting out triggers from my diet, exercise and increasing oxygen intake— that I was able to abort 100% of my headaches. through previous attempts If I tried one and not the other, it did not work, and that is why it took so long to find what works. Also if you go cold turkey and cut out all triggers expect it to take a week before it works.
Lemon Juice - or other sour products that are sour enough to get your neck clenching seems to be able to delay headackes for a few hours if you take it just as you start to feel a headache comming. I’ve used this hack many times now, if for example, I know I’m not going to be able to exercise. It does not always work, but many times it seems to be able to delay them by upto 5 hours.Sleeping on the side that hurts - I’ve found that if I sleep with my face tillted towards the side of my head where I get clusters (for me it’s the right side) then I can delay headaches. and If for somereason you want them to come on quicker, i foud that sleeping with your head tillted in the opposite direction brings them on quite fast.