Don’t let people silence you - “It’s not all in your head”

This personal account reflects the genuine experience of someone living with cluster headaches. We share it to increase awareness about the challenges patients face. 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.

Research Advocacy: We support increased scientific research into all potential treatments for cluster headaches, including controlled substances like those mentioned in this account, through proper clinical trials and regulatory pathways. Better evidence and potentially new treatment options are urgently needed for this debilitating condition.

This blog mentions suicidal thoughts. This content may be distressing for some readers, and please skip reading if so. 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!

Could you tell me a bit about yourself and your journey with cluster headaches?

My name is Cécilie, I am a 38-year-old French woman. I have two children that I raise alone. My cluster headache has been chronic and severe for 4 years, with 5 to 10 attacks per day without a single day of remission. Initially unilateral on the right, I became bilateral in December 2024 / January 2025. I almost committed suicide several times, without realizing it, by abusing medication during the nights of attacks. I also requested euthanasia in a European country that allows it. For the moment, I am being treated by a pain doctor who is allowing me to hold on, but I cannot know how long. The cluster headache is tiring me enormously. Over the years, I have lost everything that made up my life.

Do you remember your first attack?

I remember it very clearly. It was a Tuesday evening, around 6 p.m. It lasted almost three hours. I was losing my mind. I took morphine, a triptan (since I had already been known as a “migraine patient” for years) an anti-inflammatory, then another… and nothing worked. I even banged my head against the wall.

What did you think was happening?

I thought I was going to die. even hoped I would. But I didn’t dare call emergency services because I believed it was just a migraine, only more violent than usual. Instead, I made an appointment with my family doctor.

How long did it take to get diagnosed?

In total, I’m not sure. That first attack happened when I was 26. I had a series of attacks, then nothing. Then another period the following year, then nothing again. My family doctor always gave me sumatriptan tablets, saying it was just migraines.
When I became chronic at 34, with several very violent attacks every day, I went to see my family doctor thirty-nine times without ever receiving a single effective treatment. I was finally diagnosed about two years later by a neurologist at the hospital.

What was the diagnosis process like?

I called emergency services (the SAMU in France) one Wednesday evening, convinced I was going to die from the pain in front of my children. I was taken to the emergency room, and a neurologist suspected cluster headache. She ordered an urgent brain CT angiogram, retrieved a brain MRI I had done a few months earlier for another reason, and admitted me to the hospital so that the neurology nurses and a specialist neurologist could observe my attacks and confirm the diagnosis.
I was immediately classified as having severe chronic cluster headache, since I had already been suffering from several attacks every day for more than a year without any break.

What was your initial treatment plan?

At first, I was given three days of very high-dose corticosteroids through IV infusions to calm what felt like something that was going to kill me. Then the neurologist started me on Topiramate, because she didn’t have the cardiologists’ approval for Verapamil (I have tachycardia, which was already treated and stable, and they were worried about destabilizing it). Alongside that, I was prescribed oxygen and injectable sumatriptan for acute attacks.

How has your treatment evolved?

I’ve tried everything — at least everything that’s reimbursed in France.
For preventive treatment: Topiramate, Verapamil, Lithium, Amitriptyline, Clomipramine, Duloxetine, Venlafaxine, Botox injections (PREEMPT protocol), and later Eptinezumab. High-dose corticosteroids, greater occipital nerve blocks. Often, I was given several treatments at once to maximize the chances of success.
Eventually, in November 2024, I was made to undergo implantation of an occipital nerve stimulator. I’ve also received low-dose ketamine, and now I’m receiving it at high doses.
I’ve given up the high-concentration oxygen masks and now use O₂ptimask, which are far more effective. I also choose to inject 3 mg of sumatriptan instead of 6 mg.

What worked/didn't work?

My body rejected most of the medications. The others didn’t work. The nerve stimulator implantation barely works. Ketamine works partially, but only if the dose is high enough.

What's your current treatment regime?

The nerve stimulator I was forced to get is barely effective. Ketamine helps when I go back up to around 10 attacks per day. Verapamil might not do much, but it has stabilized my tachycardia, so we avoid changing it. I have physiotherapy once a week. During attacks, I rely on oxygen and injectable sumatriptan.

How do you manage your daily life during clusters?

I’m still in a period of attacks. I organize my life around the fixed timing of the attacks and cross my fingers not to get too many extra ones. I no longer have any hobbies.

What non-medical strategies help?

I use ice on my eye to reduce swelling and the burning sensation. I’ve also started taking magnesium daily to see if it helps, since the evidence on this is limited and contradictory. I’m also in supportive psychotherapy to help me cope with this daily reality without it affecting my children. Physiotherapy also helps me a lot.

How do you handle work/family responsibilities?

I hardly work anymore because I’m exhausted and in pain all the time. As for my family responsibilities: my children are teenagers, thankfully! They do a lot on their own and help me whenever they can. I pay for home assistance when I can’t manage daily tasks alone. I have my groceries and meals (and my children’s meals) delivered. I handle as much as possible remotely (medical appointments, meetings with my children’s teachers, etc). I take naps whenever I need to.

Any lifestyle changes that have helped?

I believe that sticking to fixed wake-up, bedtime, and meal schedules has helped eliminate attacks that didn’t follow a fixed pattern but were triggered randomly. Sleeping as much as possible, or at least lying down to give my body a rest (it gets exhausted!), helps me recover a lot of energy.

Could you tell me about your support system?

I have very few friends. I have a few, who are precious, even essential. And that’s it. Patient associations in France don’t really work in the interest of patients; they serve politicians or doctors and never fight for us or for access to care on the ground. I really dislike the atmosphere in online patient groups, which give reckless advice and make obviously wrong diagnoses without any medical training or consultation.

How do you explain CH to family/friends?

I don’t explain cluster headache anymore. I’ve tried, but I never managed. People would answer, “Oh, like me when I have pain,” or “You should see a psychiatrist.”
If I had to explain it to someone new, I would describe the pain like this: a white-hot screwdriver being driven into my eye, moving back and forth to tear it out, at the same time as a hammer crushing the bones of my face, at the same time as a severe ear infection, at the same time as my teeth shattering, all while my face burns from the inside.

What kind of support has been most helpful?

Psychotherapy… and ketamine (which has a psychological effect that helps me better cope with the pain). Also, a very close friend who is a support for my children. And virtuel friends who also have chronic and severe CH.

What do you wish people understood better?

I wish they would stop thinking it’s just another chronic pain. It has nothing to do with their fibromyalgia, or even their chronic migraine (which I also suffer from). The intensity is beyond anything they can imagine, and it cannot be treated like any other pain.

What advice would you give to someone newly diagnosed?

If the person is French: don’t go on Facebook groups, always get a second opinion somewhere other than the first place, don’t agree to try everything without thinking, and don’t be dazzled by French influencers who show a false image of the disease. I make sure not to do this on my TikTok account, because it’s unbearable.

Is there anything else you'd like to share with the community?

Your feelings are valid. If you’re suffering, speak up and don’t let people silence you by saying it’s “all in your head.” Cluster headache drains both body and mind. It’s not about willpower. It’s about effective treatments.