The Tale of a Cluster Headache Sufferer

Remission. It was fun while it lasted, but they’re back.

Cluster Headache SuffererSlight pain behind the right eye, a shadow of what is to come. That’s how and where they start. Within minutes the intensity of the beast revs its engine and the agony exponentially intensifies. Radiating excruciating pain on the entire right side of my head, the cluster headache has seemed to set up it’s main office deep in my eye socket with satellite locations in my temple and the back of my skull. The intensity and trauma lasts about 30-60 minutes and, on a scale of 1-10, the pain is amped up to a 10. At this point all I can do is sit there and rock back and forth ferociously with the palm of my hand trying to smash its way through my eye or temple. The tears start, my right side gets congested and I bawl in pain. Over the past 20+ years this is the point where the thought enters my head. Am I going to live through this? After what feels like an eternity of suffering through the most intense pain known to man, the waves of agony start to succeed, my rocking back and forth slows, and I start to settle down from the state of hysteria I had just experienced. Its 2am. In about 10 more minutes I should be able to go back to bed, and hopefully, sleep through the rest of the night without another malicious attack. I doubt it though. Chances are, I’ll be up again in a couple of hours, per my routine of pain over the past few weeks.

What is a Cluster Headache?

Welcome readers. My name is Nick and I suffer from a neurological disorder known as Cluster Headaches. Chances are you have never heard of cluster headaches. I am not surprised. Cluster Headaches are a rare condition that effects less than 1% of the world’s population. Many people may draw an incorrect conclusion that cluster headaches are migraines. No friends, clusters are definitely not migraines, they are two totally different conditions.

Cluster headaches are also known as suicide headaches. They get the nickname from the high percentage of folks that have heavily contemplated ending their life rather than continue to suffer from this condition. The “suicide headache” has been noted by medical resources as one of the most painful conditions known to man. Cluster headaches are usually always on one side of the head and generate pain behind the eye and in the temple. Patients who have both migraines and cluster headaches would much rather suffer from the migraine headache rather than the beast of a cluster. While both men and women can suffer from cluster headaches, this condition is more common in men. Women who suffer from this condition have claimed that a cluster headache is more painful than child birth. On average, the pain of a cluster headache lasts anywhere from 15 minutes to 3 hours. Me personally, mine are about 40-60 minutes of unimaginable, excruciating pain. “Clusterheads” (term for those of us with this condition) are usually restless during an attack. When I get hit with a full blown mega cluster, I sit on the floor and violently rock back and forth with my palm smashing its way through my right eye socket. There is no sitting still. Restlessness is almost involuntary. I have read where other sufferers will smash their head into walls or on the floor trying to alleviate the pain.

Cluster headaches usually follow a well timed cycle or cluster. Episodic sufferers will experience a period of remission with no headaches. This can last anywhere from months to even years. Unfortunately, Chronic cluster headache sufferers do not receive the remission and I can only empathize what these poor individuals must go through. I thank heaven every day that I am episodic.

Here is a link to Cluster Headache Symptoms on the Mayo Clinic website, if you would like to learn more.

My Cluster Headache Cycle

The first severe cluster headache I remember having was at age 19. Yep, that was the beginning. Little did I know what the next 20 years had in store for me. They were like clockwork. Three months on, three months off. Seemed fair, I guess. They would start slowly at first. I would have one a week. Then two a week. Then 3 or 4 a week. Then daily (or should I say nightly), sometimes twice a day. Heck there were times I could have three or four a day. But after about two weeks of daily clusters they would start to wind down to every other day, twice a week, once a week, then gone. Remission lasted about three months, and then the cluster cycle began again. It would be fair to say that I have between 30 – 80 full blown attacks during a cycle. That, my friends, is a mega amount of pain.

A high percentage of my cluster headaches hit me at night. One, two, four in the morning, somewhere in there. Wake me up out of a dead sleep and send me scurrying for a place to hide and ride the storm out. There are also the ones that hit during the day too. Most of the time these are smaller versions of the nastiness experienced in a full blown attack. I have taken to using the official terminology for these, shadows. Shadows range from as low as a 2 or 3 upwards to about a 5 or 6 on the pain scale. Anything after that is a full blown “hit”. The downside of the less pain, is that the shadows can last a lot longer than a maximized cluster headache. Some of these only last 15 minutes or stay in my normal 45 minute average, but some are hanging around for 2 to 4 hours at a time, or staying for an entire day. Sometimes, I would rather just have the full onslaught attack of the cluster and get it over with.

I am not sure if I can speak for the rest of the clusterheads in the world, but I am a private person when it comes to my cluster attacks. I try to find a dark, isolated place to rock and cry without interruption and without alarming the ones I care about. Although I have snuck away to the garage or hide in my car at night, most of the times I just lock myself in the bathroom with the fan on or the bathtub running to drown out sound. I do not want my kids or friends to watch me go through a full blown attack. Similar to watching a loved one have a seizure, I believe this would scare the crud out of someone who does not understand. Sure, there are friends and family in my life that know of my disorder, but only my wife Lori truly understands what I go through. She is the only person who has sat with me through a whole attack beginning to end. To continually have her support and comfort through the good and bad is a blessing and I cannot thank her enough.

What truly sucks about a cycle of headaches is the toll it takes on my everyday living. During the day I am exhausted from lack of sleep and my head feels bruised and sore from the attacks that hit me the night before. Oh yeah, and let’s not forget the shadows that occur throughout the day that add to this miserable time. Life during a cycle is exhausting and coupled with loss of concentration, focus and patience.

My Cluster Headache Triggers

Here are a few scenarios that seem to trigger extra attacks.
Smoking: About a year after I quit smoking cigarettes in my early thirties, I noticed that my remission times started to get a little longer. Longer to the point where I could possibly have six months in between episodes. Once I hit age 40, I enjoyed a year of remission. Better yet, the intensity of the headaches seemed to dwindle. Don’t get me wrong, on a pain scale of 1-10, the pain is still upwards of 8, 9 and 10, but those 11s are not as common as they used to be. Is the longer remission linked to smoking? Is it because I am getting older? Who knows.

Alcohol: Yes, a major trigger. I thoroughly enjoy my brews. I had been a casual drinker and a Bud Light fan nearly all of my adult life, well, up until the past few years. Now-a-days I have a strong liking for the deliciousness of craft beers. Unfortunately, when I am in a cycle of cluster headaches, I cannot drink beer. Some of my nastiest encounters with clusters have been after a beer or two. For some reason alcohol magnifies the pain level, so now I just stay away from it when I am in a cycle.

Mountain Dew: For some odd reason, it seemed that Mountain Dew would always trigger an attack. This was easy to give up, however, and I haven’t touched this gut-eater for over 15 years.

Eating: Sadly, I get a lot of shadows shortly after a meal.

Stress: Strangely enough, I have very rarely attributed an attack or cycle due to stress.

Sleeping: 90% of my nastiest cluster headaches wake me up in the middle of the night. Therefore, trying to get a good night’s sleep can be labeled as a trigger for my attacks.

Cluster Headache Medical History

Quite a few years ago I seen a neurologist that specializes in headaches. Doc told me that if I had a brain tumor or an aneurysm I would be dead already and diagnosed me as an episodic cluster headache patient. I tried Verapamil for long term management. Meh. I didn’t notice a difference. Also, my ability to remember to take a pill every day is not too good. We tried the pill form of Imitrex. Nope. We tried the nasal spray form of Imitrex. That didn’t help either. Not only that, but it made me feel worse. Next step could have been an Imitrex injection. Um, no. I passed on the fact that I would have to give myself an injection every night in attempts to abort cluster headaches. Honestly, I believe I cycled out after these trials and just resorted to this is who I am. I simply must deal with it and there is nothing else I can do.

For many years I thought that Excedrin helped me. I remember taking it when a headache started and occasionally I was lucky enough that a full blown attack never manifested. Today, I realize, that the headache was a shadow and probably would have been the same either way. I also use to think that putting myself into a bath full of water was helpful. Now I believe that it is actually the sound of the running water that helps a bit.

In 2015, I once again sought help for my cluster headaches. This was the first time in 12 years that I was seeking medical attention. It had been about 3 weeks straight of waking up every night with 2 or 3 headaches and I needed help. My doctor prescribed me a tapering dose of prednisone (steroid) and I also self medicated at night with a 10mg dose of melatonin. Within a few days I was sleeping through the night and also saw a decline in the number of shadows I get during the day. As of the day I am finishing this article I am at the end of my cycle with even the shadow headaches becoming far and few between. Although I cannot say for sure if the steroid or melatonin expedited the end of my cluster cycle, I am willing to try this regiment again when the beast returns. In addition to these remedies, I am also ready to ask my doc for an oxygen tank. I have heard that this is the best way to abort or ease the severity of an attack.

In Summary

So that’s my story. I would like to finish this post by saying that I have come to grips with my condition. My cluster headaches are a part of me and I keep my outlook on life positive. Sure, there are the “10s” and “11”s on my 1-10 pain scale that seem to exceed my pain tolerance, but I find a small bit of peace knowing that they will pass and I will live through it. I take comfort knowing that my headaches are not life-threatening and there are things in life that are much, much worse.

Thank you for taking the time to read my story. If you suffer from cluster headaches, PF (Pain Free) wishes to you! I truly understand. If you are here to learn more about cluster headaches or researching the beast for a suffering loved one, I hope that you have found some answers. By the way, June is Headache awareness month, so please help raise awareness for cluster headaches. Feel free to ask questions or comment below. Take care!

On to the next…
—wallyd

If you suffer from cluster headaches and would like to speak with others that share your experience and pain, I recommend joining the Cluster Headache Support Group. For those recently diagnosed, I remember the gushing of emotions I had when I found others like me. The support and understanding in this group is heart warming!

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2 Responses to The Tale of a Cluster Headache Sufferer

  1. Leah says:

    Hi Nick,
    I am so sorry to hear your story. My story mirrors your tremendously. I’ve been helped immensely by the cluster busters website, particularly psilocybe methods. Please consider them – you know how terrible these ‘headaches’ can be. Psilocybin has saved my life…after 13 years of clusters (7 years chronic), I have been in remission since Dec. 2014. I finally have my life back and am excited for the future! go to the cluster busters website for more info.

    • wallyd2 says:

      Hi Leah! Thank you for reading. I will definitely check out the cluster busters website. So good to here that you have been pain free for four months! I hope they continue! Thanx again, take care!

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