This post is to help people understand what a personal experience with chronic cluster headaches can be. It isn’t giving medical advice, it isn’t soliciting medical advice, but just maybe it will help you in your journey with chronic pain or help you better understand what a loved one is going through.
Cluster Headaches aren’t Migraines
Cluster headaches are not migraines. They sometimes are referred to as suicide headaches. The more I learn about people’s experiences with cluster headaches the more I am realizing they can be far more traumatic than most migraines. Not only can the pain be more intense but the duration of time they affect your life can also be longer. I have heard someone compare a cluster headache to a migraine as comparing a bullet wound to a paper cut. I don’t know if that is true for all sufferers, but I can tell you sometimes I don’t feel like I am going to survive having even one more.
Cluster headaches are severe headaches that last for a short period of time and then you experience a pain free period of time until the next one. Sufferers typically have them again and again for days, weeks, months, or even years without reprieve. They are in a constant cycle of pain, exhaustion, and waiting for the next attack of pain. They tend to be in one location behind an eye and are more common in men (mostly men who smoke) than women. The reason they are called ‘cluster’ headaches is because you have a long period of time where they happen again and again and that is the cluster period. Sleep does not help cluster headaches. They are so painful they will wake you up from sleep. They also don’t respond to migraine medications and the typical migraine treatment of finding and avoiding triggers (as given to many migraine sufferers).
Cluster Headaches aren’t Commonly Known
I wasn’t diagnosed with cluster headaches till September of 2019 although I had been dealing with them since early summer of 2016. Up till this point I had been diagnosed with migraines by every physician I saw. I told every one of them what I was going through, which should have been classic symptoms of cluster headaches. But my diagnosis was consistently kept as severe migraines because they are more common. No one questioned it. I was even prescribed an ap to track my experience and now looking back I know it was clearly telling the story of someone who had cluster headaches and not someone with migraines. But the more I learn about other sufferers’ experiences the more I learn I was not some anomaly that slipped through the cracks. I have heard on average it takes about four years for diagnosis. Many doctors specialize in migraines but not cluster headaches and as of this writing there are no ‘on-label’ treatments for it. Treatments for other conditions are used and very little research has been done despite cluster headaches being about as common as MS.
And I personally had never even heard of them. I also thought a headache was a minor pain so the pain I was feeling had to be a migraine. This choice of terminology made sense to me because migraines were worse pain than a headache. I didn’t have the knowledge to even articulate that the pain I was having could be called a ‘headache’ because in my mind that word wasn’t extreme enough to describe the pain. Honestly, I am sure there are thousands of people suffering from these and they don’t even know to call them anything but migraines.
How It All Started for Me
In early summer of 2016 I started to get really bad headaches. Some people told me they were rebound headaches so I should stop taking ibuprofen to treat them. I didn’t think this was any kind of chronic condition that entire year. I basically ignored it and kept on with my life dealing with the pain as it came not putting the pieces together that this was a new medical condition I had. That year was extremely stressful for me and the trauma and pace of that year is probably what caused me to start having the cluster headaches. Trauma is a cause I see over and over in people’s personal stories with this condition.
At the end of 2015 I lost my grandmother and a really close friendship. Then at the beginning of 2016 I had surgery near my spine, I was let go from my job and left all my friends there, and I was witness to a fatal police shooting. After the fatal shooting, the PULSE shooting happened. Having lived in Orlando and having been to that club and having just gone through something similar I felt traumatized all over again. I went to counseling for the stress of all of this but I didn’t know to tie my physical symptoms to everything I was going through. I never even mentioned it. It was most likely the trauma from the fatal shooting and me never slowing down in the turbulent month that followed that somehow changed my brain chemistry. I probably would never have stopped this change from happening but my total lack of self-reflection and self-care surely made it worse. As the year went on I went right into a new job with an insane workload and coworkers that didn’t like me, I moved because of the new job, I accidentally created a viral post that caused me to have to respond to media around the world, and I just kept operating at a ridiculously fast pace without giving my health (mental or physical) any real thought. I wore myself down. I didn’t even understand that this pain was a problem that really needed to be addressed.
It wasn’t till the end of 2017 that I finally figured out my headaches (what I thought at that time were migraines) were a problem I couldn’t handle on my own. I went through bottles and bottles of over the counter pain meds just to get to work and finally admitted to myself this problem wasn’t going away. I had never had a debilitating chronic illness before and never thought of myself as someone who would have one. I think that is why I naively thought till this point that one day I would just wake up and it wouldn’t be an issue ever again. At this point they were lasting for around three weeks with maybe a month or so in between clusters.
Wrong Treatment after Wrong Treatment foR the Next Two and a Half Years
The first doctor I saw at the end of 2017 recommended I go gluten-free to solve the headache problem because it was most likely an intolerance. He also pointed out exuberantly that it would have the added ‘benefit’ of helping me loose weight too. (Point taken sir but that is not why I am here.) I was gluten-free for four months including the Christmas holiday. He was wrong on both counts.
I then went to a specialist. A Nurse Practitioner they called ‘The Migraine Whisperer.’ She prescribed preventative medication after preventative medication. They all failed. She also never gave me anything that really helped with the acute pain. I now know it was because of the misdiagnosis but I felt so hopeless that nothing could ever help me. She was also the one that recommended I get an ap to track my attacks. I used it and showed her my results and she never once thought it wasn’t migraines. This is either because she didn’t understand the ap she prescribed me or because she wasn’t well informed about cluster headaches.
2018 was a horrible year. I had 732 recorded attacks that year and my life was truly changed. My social life changed and I felt very isolated, I completely stopped working out regularly because I simply didn’t have the energy, and I was in a cycle that never seemed fixable. One of the biggest things I lost was the ability to drive, at least safely. If I got an attack while driving I would have to immediately pull my car over and would be stuck somewhere for almost an hour waiting for the pain to subside. I also lost the ability and drive (pun intended) to do things I once loved like creating art, going to see art exhibits and musical performances, and scrapbooking. The loss of interests was a key sign of being severely depressed but I didn’t see it. My depression was horrible and looking back I know I should have gone to the doctor to be treated for depression, but the headaches were consuming my life and survival with them took up everything I had. I was so drained all the time I didn’t even think to analyze anything else about my well-being.
In 2019 I swore I would figure out what was wrong with me. I learned to be a stronger advocate with all the doctors and demand further testing, treatments, and quicker response on contingency plans when those treatments inevitably failed. I learned to make the doctors write down everything I suggested they try that they said no to. This was invaluable because without this I was basically trying the same ideas over and over again from the beginning without validation. I was determined to get traction on this but it still was scary to set the goal of figuring it out because every goal I had set in the last three years I had failed at. I now realize it was because I didn’t have my health. It is why nothing else worked. Here is a list of things I tried that didn’t work for me while trying to figure this all out:
Gluten free diet
Monthly Massages
Acupuncture
Chiropractor
5+ preventative medications
magnesium (common treatment for migraines but had no bearing on what I was really going through)
B12 (another common migraine treatment I didn’t need)
6 MRI scans
Over the counter meds WAY over the amount you are supposed to take
10+ urgent care visits to get pain medication administered through IV (Which I was always told would provide relief for at least 24 hours and the relief never lasted longer than four hours.)
CBD oil
Tracking my hormones
Tracking my attacks on an ap (helps me now see what I am going through but the doctor who recommended it had no clue what she was even looking at when I showed her results)
Tiger Balm/Icy hot/ice pack/heating pads
Guided and unguided pain management meditation (this helps me get through the pain mentally but that is about it)
Psychotherapy specializing in pain management
Tapping (this helps me get through the pain and lessons the overall intensity but has no effect on stopping it)
Epson salt baths
A ridiculous luxury heated shoulder massager
A nutritionist (they had many helpful ideas but what I eat has nothing to do with these headaches)
Sleep (doesn’t actually help because the pain wakes you up)
Trying to pin point triggers (this is a common treatment for migraines trying to find what sets you off but it doesn’t really apply to what I have)
10+ doctors
Dozens of doctor visits
An in hospital sleep study
Steroid packs (these help with severity overall but that is about it)
Steroid nasal spray (this helps acutely but that is about it)
A nueroblocking injection (in my skull… It is as bad as it sounds)
Limiting Caffeine
Journaling
Yoga
And eating my feelings and eating for comfort at home alone while crying was also consistently tried…
Nothing truly worked and stopped the suffering. And it was only by sheer accident did I even find out what was truly wrong.
One day at work during a fundraising luncheon I was sitting watching our President speak and I was having an attack. I was clutching my head with tears streaming down my face. Yep, I consistently cried in public because there was nothing else I could do at this point. After she spoke with me about it and how she saw me being so miserable and I described how this was my life for six weeks. Up and down all day every day for weeks. Her eyes got wide and she said “I know what you have and it isn’t migraines.” She then proceeded to tell me about a friend of her’s who had what sounded like the exact same problems I had, except he had suffered for 10+ years before he was diagnosed correctly. I was given his contact information but most importantly I was given the right terminology, I now had a name for what I had, I could now actually research cluster headaches. Now everything fit, the symptoms, the questions I had, it all fit where with migraines I always felt like it didn’t fit and the questions asked were all wrong.
I then switched to a new neurology center. But even that doctor initially seemed to again ask the wrong questions and was just going off of what my file said about my condition. I had to stop her and tell her the reason I switched doctors was because I had met someone who seems to have exactly what I have but they called their condition cluster headaches. She than asked me all kinds of verifiable questions that finally seemed to fit. And she agreed with me, I was now diagnosed me with cluster headaches.
We now tried different preventative drugs but one after another they still failed. However their attentiveness to help me was much quicker and more contingency plans were put in place than ever before because they now understood the true level of pain I was in. I was making progress towards finding the right treatment but I wasn’t actually getting better. Come the first week of October I started getting attacks. They lasted till mid-November. I then got a cold (because everyone in my office comes to work when they are sick and just passes it around). And the attacks started right back up. I was miserable. I had been sick with the headaches all but five days in two months. I was exhausted and at the end of my rope and my available sick leave.
That is when we tried the nerve blocking injecting at the base of my skull. Like so many other treatments I was told I would have relieve for an extended period of time. I was told I would have relief for at least 24 hours and then my attacks would slowly start to subside. Or it it didn’t slow the attacks I would at least get the 24 hours of relief.
After the injection I did feel relief. I felt relief for about four hours. And during that time I even had a weird pressure sensation in my head come and go and I figured that was an attack it had prevented. But then after four hours I had one of the most intense attacks I have ever had. It was excruciating. A really bad day for me is 10+ attacks with most being around a 7 out of 10 in pain and two of them being worse. This started a cluster of 20+ attacks a day with the pain thresholds always at a 9 or 10. I was no longer just feeling hopeless and exhausted I WAS TERRIFIED.
I was having such bad anxiety before the attacks fearing the impending pain that I was actually shaking. My anxiety was through the roof and I didn’t think I could survive this. Friends and family brought me food, drove me to medical appointments everyday, helped me get prescriptions, and I was absolutely helpless and scared. I could barely comprehend what was happening from exhaustion and actual fear of the next impending attack I couldn’t escape. My doctors said this should have never happened. They had never seen a reaction like mine and it shouldn’t have even been a possibility. They think the actual nerve ended up physically irritated by the injection so the nerve-blocking agents injected had no effect and the nerve went into overdrive completely debilitating me.
But this disaster is actually what saved me. They prescribed me an extremely high dose anti-inflammatory along with a preventative/high dose antidepressant and for the first time I actually had sustainable relief. The medication tears up my stomach and has me running in and out of the bathroom but I will take that any day over what I was experiencing. I was pain free in mid-cluster for about ten days on the medication and was even able to get home for Christmas.
As of today writing this I have been healthy almost two months! And I have felt energy for almost a month now. I have created art, I feel safe driving, and I don’t feel so hopeless. I can tell I am starting to get a cluster of headaches and I will just have to wait and see if this medication can stop this one from happening too. But I am hopeful.
What I have learned from all of this is how hard it is to be your own advocate in healthcare when you are the one who is ill. I am an extremely independent and a well-read person and I still think without accidentally stumbling onto my diagnosis I wouldn’t have found the solution because I wasn’t communicating clearly enough about what was wrong to get the correct diagnosis. I also am very grateful I am able to walk to work and had tons of sick leave. If I had a commute to work or less sick leave I would be unemployed. There would just be no way I could have made it work.
And I also felt really alone. All the time. I had some wonderful friends who helped me when I reached out and who did what they could but there were so many people in my life who simply didn’t check-in and didn’t invite me anywhere. I know I lost friendships because I wasn’t being proactive enough to maintain them, but I was too exhausted to, and the isolation I experienced through all of this was a real eye-opener for me. I wanted to reach out to people for help but I felt like a total burden. No one wants to be around you when you literally can’t do anything and just need them to help you do dishes or get you some groceries. And after experiencing this I know no one should feel isolated, hopeless, and constantly be battling everyday only to end the day feeling more hopeless and more alone. As a society I think we assume everyone has got this but some of us don’t.
So if you are going through something like this know I am here to listen. Feel free to reach out to me on my contact form. One of the greatest things that happened to me was finding someone going through a similar experience I could commiserate with. And if you know someone who is going through something similar take time to reach out. They may not be able to go do something or have much energy to offer but showing up and showing you are there for them even if that means taking time out of your day to run an errand for them can make a huge difference. I don’t know where I would be if people didn’t help me when I was at my lowest. We are taught not to be a burden to others but we can all use a little help now and then