Never be ashamed of the illness you are fighting
This personal account reflects the genuine experience of someone living with cluster headaches in their own words. We share it to increase awareness about the challenges CH sufferers face. It is not medical advice. If you have any persistent headache please contact a doctor immediately. This is part of our series where we highlight cluster headache sufferers’ stories. If you would like to share your story please get in touch with us.
Disclaimer: Myclusters. does not encourage, promote, or endorse the use of illegal substances. The treatments mentioned in this account may be illegal in your jurisdiction and are shared solely as part of this clusterhead’s personal experience, not as recommendations.
This content may be distressing for some readers, and mentions suicide. If you're having thoughts of self-harm, please consult qualified medical professionals or call the Suicide Hotline in emergencies. Click here to find the Suicide Hotline number for your country!
Can you tell us a bit about yourself and your journey with cluster headaches?
I am Rob, 28 years old, chronic cluster headache patient and in this blog I will tell my story about how I got diagnosed, things I have run into and what keeps me going. But also some, well-intentioned advice, for fellow clusterheads, loved ones and others to understand the severity of this disease a bit better.
Little note beforehand: cluster headaches are incurable and all medications and treatments I used or done were off-label to work on the symptoms not the cause.
Do you remember your first attack?
Yes, and no. The first severely serious attack always stays with me! This also was the attack that led to my diagnosis. The time before that I remember less clearly, be it because I had no idea what was going on or I was unconsciously in denial that something was wrong.
What did you think was happening?
Since the age of 18 (2016), I have experienced severe headaches/shots on a weekly, if not daily, basis, strictly one-sided (left side). At first the attacks were very short and stinging. Like a thunderclap. Progressively, the attacks became more frequent and persisted longer. I always took this for granted because they were short and everybody has headaches sometimes, right? (I thought)
My environment and the GP blamed it on "must have been too busy lately", "you drink too much coffee”, “have to drink more water", “You have to sleep more” etc. and for a long time I believed or wanted to believe this was the truth.
How long did it take to get diagnosed?
The proper diagnosis came after approximately 6 years of GP appointments, 2022, and was the moment I first saw a neurologist. I did go to the GP for sometimes over the years (mostly at the insistence of those around me) but it was often brushed aside under stress or fatigue, while I said I didn't experience those problems at all.
This should have eventually rang a bell with me or the GP, but since I was (medically) in good shape, happy and energetic, it probably didn't occur to anyone that this could be something more serious.
What was the diagnosis process like?
March 2022 I got a corona infection which caused headaches on the other side (right) and made the pain on the left side even worse/ hellish! This was followed by a 37-hour period of consecutive attacks without breaks in between. After a night of complete panic, I went to the GP; I couldn't handle light; sound; my eyes exploded, so did my head; I could barely walk; rocked back and forth; bit my arm. The doctor then tried to control it with oxygen (low-flow) and triptans (3mg) and when that didn't work I was allowed to go to hospital!
I went to the neurologist, followed by a visit to Cardiology to get an ECG and to Radiology to get an MRI. Everything was OK? they said and I was instructed to keep a headache diary for a few days and write down my story. By the end of the week I was immediately labelled as a chronic cluster headache patient. With almost certainty that all those previous years it was also CH.
Treatment Journey:
What was your initial treatment plan?
After that day, the nighttime attacks also started coming through. The daytime attacks became much stronger in intensity and duration and as a result, I became quite tired and emotionally unstable and lost a lot of weight, fast (75>63kg)!
The moment the diagnosis was given I was set on Verapamil (240mg), prescribed Sumatriptan injections (6mg)/ nasal spray(20mg) and Oxygen (15L/min.) for at home. Not long after that I received a GON-Injection, hoping it would stop some attacks or ease the pain a bit (it didn't).
How has your treatment evolved?
Someone once told me that ‘living with a rare disease is like being a living science experiment who just wants treatment to end the suffering’. I think that you couldn't sum it up any better.
After the Verapamil didn't do much, it was increased several more times up to 960mg a day. In between, I was prescribed Frovatriptan 5mg and Topiramate up to 60mg, among others. I then transferred to LUMC June 2023, where I participated in several studies. One of them included repeated GON-injections (1x month - duration: 1 year) called REGON. July 2024 I was prescribed Lithium up to 1200mg with anti-emetics and last January 2025 I received an ONS at Erasmus MC.
What worked/didn't work?
Medicated, nothing worked. Not even a little bit. I did experience some improvement in the first week on an increased dose of Verapamil, but I think that was fooling myself. After that, there was always immediate regression.
The only thing I did benefit from was the REGON-trial with the repeated injections (corticosteroids). The first week was structurally worse, followed by several weeks of improvement, sometimes up to 50%! Unfortunately, this was not allowed to continue and the injections made my headaches switch sides. So it's now mainly on the right.
Lithium never reached 0,8 mmol/l with me. The level fluctuated enormously and it made me very nauseous. I was given anti-emetics for this but these did not help either. Since September 2024, I have therefore been declared ‘untreatable on medication’.
What's your current treatment regime?
Currently, I am not taking any medication. When attacks come through, I try to absorb them as much as possible without abortives. This is not always possible so I do still have Sumatriptan injections and oxygen. Both work about 50% of the times used, and when they work it takes the sharp edges off the attack. Reducing duration or intensity does not occur with me.
January 2025 I had surgery for an occipital nerve stimulator (ONS), which aside from constant pulsing the nerves at the back of my head also allows me to turn up the electrical pulses during an attack. This may help according to some, but I have not experienced that yet. I have only just gotten this device, so in terms of settings, a lot is still possible. That is what I am pinning my hopes on now.
Daily Life & Coping:
How do you manage your daily life during clusters?
Since it is chronic with me, I am never not in a cluster. The attacks are there every day and night. Daily life and daily activities are severely limited as a result. I still make lists of things I want to do or need to take care of every day. I often don't check off all of it, which frustrated me in the beginning, but I don't mind that anymore.
Also I am busier now, with the attacks and all the medical appointments around them, than I was with my full-time workweek. That also is kind of a crazy realization.
What non-medical strategies help?
To be short I think, coffee; exercise; fresh air and a positive mindset are my main keys for me.
Keeping my head busy, as crazy as it sounds works for me. Playing with the kids. Cleaning up the house or the sheds. Walking, cycling and longboarding. Going to someone's house for coffee, socializing (if I'm allowed). Drawing or playing games etc..
Whether it is possible or not, I have no clue, but I notice when I keep myself busy that I have somewhat better days than when I have nothing to do or can rest a bit (which is very contradictory because I could really use that rest😑).
I also experienced a lot of neck and back pain from the attacks. For this, I went to a manual therapist for some time and later to the chiropractor once. In the end, it eased a little in terms of muscle tension which allowed me to endure the attacks a little better, until it was all stiff again. This did not bring improvement in the long run.
How do you handle work/family responsibilities?
I cannot work properly or casually make/ keep appointments anymore because of; attacks that come and go; triggers; fatigue. Therefore thinking about my future is quite scary. I thought I had it all planned out, but then I got sick. Furthermore, I am more often confused than before; suffer from brain fog; I'm not as fit as I was anymore; more emotionally unstable; and therefore sometimes more easily inflammable or irritated.
Within the family, fortunately, things are going well. Yes, the cluster headache has changed a lot, that's for sure. It causes a lot of grief, puts a heavy burden on my loved ones and, unfortunately, also brings a loaf of financial uncertainty. As if the illness wasn't enough already…
We are fortunately very resilient and draw a lot of support and strength from each other and from our faith. But it is certainly not easy. The children have grown up with the fact that I suffer from this. This doesn't make it easier for them to see me like this, but it does help that they know very well how to deal with it. I get a lot of strength, joy and courage from their presence and from my family. I can't imagine what it would be like if I didn't have them, and if I would be able to cope with all of this. It is very likely I would have kicked the bucket. How painful that is to admit.
Any lifestyle changes that have helped?
I don't let myself be known. Where I can I try to meet up or do things. The risk is high, I am fully aware of that, but I just hope for the best and if it goes well then that's fine. If it doesn't work out then that's unfortunate but I refuse to let things go in advance. Better to regret something you did than something you didn't beforehand.
Besides, I had to learn the hard way that asking for help is not a weakness. In terms of expressing emotions and asking for help, I was an “impenetrable fortress”. To protect myself but also others from my personal suffering. You don't sustain that! And I am very happy that 'the drawbridge' can now be opened more and more often. I don't think I can ever be completely comfortable with it. But little by little I can slowly accept it more.
Support System:
Can you tell us about your support system?
There is no shortage of support. That really does make me feel rich. Friends, family, acquaintances, other villagers. I am asked how it goes and offered help from all sides. I find that very difficult, I don't like being the centre of attention, especially in a situation like this. But it also gives me a lot of strength and freedom that so much people around me truly care.
How do you explain cluster headaches to family/friends?
It's hard for others to understand the severity of cluster headaches because its quite complicated; incomparably painful and they don't see me at my worst. But then again I wouldn't want them to have to see me like that anyway. For that reason, I also find it very difficult to put words to this. So I often describe it as it feels.
“A barbed knife drilled through your eye and repeatedly pulled back and forth with a twisting motion. At the same time, the feeling that something inside your head is trying with all its might to force its way out through your skull. And what can you do about it? Nothing!”
I am absolutely not weak or dramatic but cluster headaches are eroding my mental resilience. Therefore I cannot cope with things I would usually take in my stride! The anger I sometimes feel towards my own body is beyond compare, even when I know it is not my fault.
What kind of support has been most helpful?
Actually two things support me the most.
1. Other clusterheads. If there is one thing that is positive about this disease it is the strength of fellow sufferers. We know from each other what it's like, which makes you feel understood. It's a group of people who, with all their love, patience, genuine interest and concern, put their shoulders to the wheel and support you. Especially when I was new and all the uncertainties came at me, I felt very safe and carried here.
2. The love of those around me. To name specifically my wife! All admiration for how she copes with this and can also support me in every way and decision I make. Also to my parents and those who helped us wherever they can, if not by taking care of the children then by driving me to just about every possible appointment I have had in recent years (and there are many!).
What do you wish people understood better?
A lot! There is also already a lot covered above so I will do my best to summarise some new insights:
To begin with the lack of independence is sometimes harder for people to deal with than the attacks themselves. Respect that, even if you can't cope with it. They might do weird things or do smoke or drink even if it triggers, but they are people who suffer daily. Sometimes it's a trade-off you make just to feel human again.
Cluster headaches are not headaches! Awful name! I suggest a change. They are not the same as migraines, are not stress related and definitely not fixable with a bit of rest and a Paracetamol! There is a reason why they go by the name of SUICIDE headache…
Not having to work is not like a vacation! It is pain, recovery, distraction and again. Yes, in between you have good moments. But nights? No! Also there are no off-days, no weekends and no compensation for your (lost)time. For me it's 67h of attacks per week, on average of the last 6 months. And that's time aside from medical appointments. So I'd rather work 40h with all the benefits it gives, be home at a set time, enjoy my kids and have a good rest.
What advice would you give to someone newly diagnosed?
The best advice, in my opinion, is to never be ashamed of the illness that you are fighting. You didn't do this to yourself. You have no control over it and its definitely not your fault. You're going to have good days, embrace them! Enjoy the break from all the suffering and use the time to regain happiness!
Is there anything else you'd like to share with the community?
Thanks for being so empathic, kind and helpful! Where would we be without support?
And for those who aren't feeling alright, that happens often unfortunately, perhaps the most important thing to say is that you matter! Stay positive! No matter how shitty the future seems. If you lose yourself then your body reacts accordingly. Time is never wasted as long as you fill it with things you enjoy. Regardless of what others think of that. I have always been really joyfully and positive minded. And I think that is what kept me steady on my feet.
