It took 13 years for me to actually get the correct cluster headache diagnosis
Note: This blog is a self written article by an episodic clusterhead - they are a researcher in the STEM fields, and also advocating for better diagnostic process and treatment for cluster heads. They wish to remain anonymous. Their views, responses to medications are all personal accounts and not medical advice. MyClusters is publishing this for informational purposes. If you suspect painful headaches, please consult a medical professional.
Foreword:
It took almost half a year for me to write this blog post. I kept revisiting the contents, reflecting on what has really happened in the past decade. In a way, writing about it is a healing and therapeutic process(sometimes still with sorrow) for all the trauma endured. It felt so surreal and unbelievable that this whole experience actually occurred to me, and I am still standing here, living and breathing.
I try to put myself in different shoes, to look at cluster headaches from different perspectives. If I were a “normal person”, I think the hardest thing to sympathize and emphasize would be
1) the excruciating pain that is almost impossible for normal people to imagine (9.7 vs 7.2 for child birth, source: doi: 10.1111/head.14021) And make that multiple times a day and day after day.
2) the lack of effective treatment like many rare diseases and the enormous amount of mental care needed during and after the attacks.
If I were a caregiver, I’d wish medical professionals would prepare me much better for what is about to happen, especially with all the invisible and hard-to-quantify symptoms and side effects from abortive medicine. If I saw a massive bleeding case, I know the situation is dire. But cluster headache patients do not have any visibly urgent symptoms or measurable data by medical equipment. It is like an invisible massive bleeding.
If I were a medical researcher or doctor, I’d hope I am given more time and proper conversational and empathy training to teach my patients why it is so difficult to study and treat this illness due to the complexity of our neurological system.
And last, this message is to all the people that do know about cluster headaches. Please keep fighting for yourself, and for the community. Before any major medical breakthrough, patient advocacy is the only way to let our voices be heard, to raise awareness, and to make steady progress on learning how to treat the physical and mental aspects of cluster headaches.
Could you tell me a bit about yourself and your journey with cluster headaches?
I am a female cluster head of almost 15 years. My first cluster cycle started when I was around 14-15.
Do you remember your first attack?
To be honest, it is a bit vague now looking back to that period of time. I guess the human body is very good at masking painful memories to help us keep surviving and living. The only thing that I did remember clearly is I was astonished by the level of pain, even as a teenager back then.
What did you think was happening?
When the first attack happened, it was such a new experience, that I think the young me could not even comprehend what was going on. I vaguely remember I was so stunned by the high pain level. I wanted to cry and scream, but all that happened was a mix of uncontrollable tears from watered eyes and sweat from alternating between cold and hot sensations. Every second felt like eternity, and I was also in a confused state of not sure which reality I am in.
How long did it take to get diagnosed?
It took 13 years for me to actually get the correct diagnosis. Every time I think about this fact, or mention it to someone, I still find it very hard to believe. For the first 7 years, I moved cities and countries a lot due to life circumstances. Coincidentally, everywhere I went, I was treated with migraines. I guess this shows how much of a lack of understanding and knowledge there is about cluster headaches globally. Plus being a female makes doctors more prone to think towards the direction of migraines, hormonal irregularities etc. Once my life settled down a bit, I kept pursuing for a more effective treatment and eventually this led to a proper diagnose.
What was the diagnosis process like?
Female, irregular period, suspect migraine-related due to hormone imbalance, usually some sort of coordination checks to rule out underlying neurological problems. Once everything anatomical checked out okay, no further checks were carried out. I was just prescribed migraine medication for many years, even after seeing neurologists from local hospitals. Luckily, I had a very persistent GP. She kept looking for a solution with me. She listened to my “stories” every year, tried so many different types of medications with me, referrals etc. and eventually I was able to see specialists at LUMC and got diagnosed. The entire diagnosis process could have been made much easier if there were a more centralized platform to analyze all the headache diary entries patients kept documenting.
What was your initial treatment plan?
After the cluster headache diagnosis, the treatment plan was very textbook standard: pure oxygen plus Sumatriptan injections as abortive, and Verapamil as prophylactic medicine.
How has your treatment evolved? What worked/didn't work?
Phase 1: Verapamil, Oxygen, Sumatriptan 6ml injections; No obvious changes on the attacks from Oxygen. On day 5/6 of Verapamil use, severe allergies start to develop(red patches everywhere from head to toe), with breathing difficulties, need to go to ER; First 10 shots of Sumatriptan felt so strong that my heart and body is trembling and contracting, and the back of my head feels like fireworks exploding with heat waves, but luckily after 10-15 min, the attacks diminish and eventually dies down. But my body can still be shaking from the effect of Sumatriptan
Phase 2: We stopped Verapamil for about 3 weeks, waited until my allergies mostly died down. And then we tried GON injection, one shot, and right side of the back of my head. The injection site was swollen for at least 1 week and hurt when lied down in bed. After 4 weeks of waiting, no changes on attacks.
Phase 3: Frovatriptan + Topiramte. First 10 days no changes on attacks. Then the condition degraded drastically, from 2-3 attacks per 24h to 10 attacks per 24h. Once used 6 Sumatriptan in 24h. Used oxygen during this process just to help with breathing, because at some point I was in so much pain that I was also sort of hyperventilating. I was dehydrated because I kept vomiting from each attack. Had to stop both medications. 2 weeks later, somehow the attacks reduced to 1 or minor per day, and another 1 week, all gone.
Phase 4: No prophylactic medicine now, nothing.
What's your current treatment regime?
No prophylactic medicine now, nothing. I just make sure I have enough daylight exposure everyday, try to have a routine to also help with stabilizing the circadian rhythm. Given annual blood check results, I would take vitamins D3, K2, and magnesium
How do you manage your daily life during clusters?
I could NOT manage my daily life much. When I lived alone during my student years, I think I was blocking the pain mentally so much. And the pain itself was so much (and as I also had no working medication at the time, because I was treated for migraines)that I had no capacity to even think much about other things. Since I also vomited a lot, I could not eat much, no appetite. Once a week, if I happen to have some energy in between attacks, I would somehow manage to go to supermarkets to do some quick groceries, and try to deal with some emails/paperwork with the university related to study delay and any possible financial support. A lot of memories of those years are already a bit blurred, or self-deleted as part of the brain’s self-protection mechanism. In recent years, I have a partner living with me now. He would take care of my daily life. That made the whole process much more bearable.
What non-medical strategies help?
A lot of breathing exercises, therapy, mind mapping, so when the attacks happen, I can still have the awareness to regulate my breathing, and try to draw something in my mind (usually a pine tree somehow), to imagine the details of the tree, somehow this kills some time, and help me push through the worst stage of pain
How do you handle work/family responsibilities?
For most years, family responsibilities have not been part of the scene yet. However, it is becoming more relevant as I age. Nobody can give me all the answers, as everyone’s body is different, and the family situation is also different. Mentally, I always try to develop myself towards being more self-resilient, and self-sustainable. Of course I am also very grateful for my partner’s support. But I understand deeply that some of the fights in this are really lonely. I have built up so much mental resilience over the years because of the strong desire to still live a life I want.
For work responsibilities, I know I can do good work. I try not to let my self-worth be determined by how much I can work and how long I can work. In the past, I would feel so guilty of not being able to always perform when needed, due to CH. But now, I try to just accept the reality that there is only this much I can work on. And I try to look for opportunities that allow me to have work flexibility if the situation allows.
Any lifestyle changes that have helped?
- Practice meditation, be more aware of how my body feels,
- Lots of strength training, eat enough protein,
- Take vitamin D plus magnesium supplements
- Routined therapy sessions: to deal with the trauma, panic, fear, anger
Could you tell me about your support system?
Self: this is tbh the most. I really don’t know how I survived all those initial 10 years, a lot of pushing through with sheer will power.
Family: most of my cluster years, I happen to also be living very far from my family, not on the same continent, so they could only provide remote emotional support, and send care packages.
Friend: I have a few friends, who roughly know about my condition. But it’s still hard for them to grasp the full picture, since nobody sees me during my worst days.
Work : For the last 5 years, after my student time, I am lucky to have a job that allows me to arrange my own time flexibly, and my supervisors are very free-style and supportive. In the future, I also try to look for work opportunities that allow flexibility.
Support group (this helps a lot, to be able to talk to fellow cluster heads)
How do you explain CH to family/friends?
One of the hardest parts of having CH is actually how to explain it to people in a way that they can sort of comprehend the severity of the situation, instead of equating it to a normal headache. My family has seen me during the worst times, so they can understand it very easily. With friends, if they happen to see me, then they would say omg, the situation was much worse than what they imagined.
What kind of support has been most helpful?
- Support group
- People watch Youtube videos, read and learn about CH and ask me questions related to my experiences dealing with CH.
- Work support: allow flexible working hours, project-based work etc.
What do you wish people understood better?
It’s NOT just a headache. And the severity of this illness, its significant impact on mental and physical health(especially the after care), and how it affects daily life.
What advice would you give to someone newly diagnosed?
Be very gentle towards yourself, and be aware that you will go through many emotional and physical stages. The living-with-it afterward is if not harder, just as hard.
Is there anything else you'd like to share with the community?
- A better name for the disease (Due to the existence of more than 150 types of headaches, the word headache has been over-used and lost its linguistic accuracy to convey important messages, which leads to the general public thinking cluster headache is just a headache. This makes gaining proper social support from government organizations (or any agencies that patients have to deal with) extra challenging)
- More advocacy for more research, more understanding, more social warfare system support (more clear recognition of the disease in the government support system)
- Make more educational diagrams and videos to be able to show more effectively what CH is, and how challenging the physical + mental recovery process can be.
