Living with a chronic disease is like having a full-time job. One that you can’t take a day off from

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

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. 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?

My cluster headaches started when I just moved out of my parents’ place. I was 22 years old. Since I experienced a period of time in my puberty having migraines, the GP would send me home with a “weekend-migraine” diagnosis for about 3 years. Women+severe headache=migraines.

I KNEW it was something different, but no doctor would send me to a neurologist. After 3 years, I read something about cluster headaches and the symptoms they described were exactly what I was experiencing and what I have been telling my GPs! I finally found my diagnosis, called my GP and she immediately send me to a neurologist! I have never seen my GP again.

That's when the journey started off trying every kind of treatment known, going from episodic to chronic, becoming depressed, suicidal, not being able to work and becoming a totally different person from who you once were. It's a life full of grief. A kind of grief most people will never experience.

Do you remember your first attack?

No, not really. Since I was already familiar with migraines, I think I just thought it was one slightly different and intense migraine attack. I did start to visit the GP about this after a few attacks. It was so different from the migraines I knew, it didn't feel right! I do know what age I was, where I lived and the start of the cluster headaches. I just don't exactly remember the first attack I experienced.

What did you think was happening?

That it was “just” a really bad migraine.

How long did it take to get diagnosed?

3 years

Treatment Journey:

What was your initial treatment plan?

Before my diagnosis, I used sumatriptan tablets. I had those prescribed for my migraines already. This wasn't working, it takes way too long to dissolve, before that I would have already puked it out. I was taking a lot of painkillers as well. (Which of course also didn't work). When I got my diagnosis and visited a neurologist, first thing I asked was for the sumatriptan injections, which I've read about. She gave them to me, but I did have to bring it up myself. This changed everything, and made me have more time/energy to focus on preventive treatments. I tried everything the hospitals can get me; Verapamil, Lithium, Prednisone, GON-injections, Frovatriptan, Sumatriptan, Oxygen, Pizotifeen and probably more.

How has your treatment evolved?

For me those treatments didn't work.

Well, Sumatriptan is an effective abortive treatment for me so I count myself as lucky. Even though the injection aborts the cluster attacks very quickly, the medicine still tires me out.

At some point I searched for alternatives and of course the main treatment you stumble upon are psilocybin mushrooms. I wasn't unfamiliar with mushrooms/truffles so I also wasn't too scared to try it for my clusters! Microdosing unfortunately didn't do its thing, but when I did a full trip, I went from having daily 8-12 attacks to one week completely pain-free, almost pain-free nights ever since and I think approximately I have 1-3 attacks a day. This is of course huge difference and made it possible for me to climb out of depression.

What worked/didn't work?

I can't really tell if the Verapamil would have worked. My heart rate is apparently too slow to be on a high dose. Topiramate I've never tried, because they thought I was too light-weight. Maybe I could have noticed a slight difference with the GON-blockade and Oxygen, but not enough.

What's your current treatment regime?

Currently I only use Suma- and Frovatriptan as abortive treatments. It's been years since my last psychedelic trip, but I always have some at home, just in case it gets bad again. My last case scenario is trying an ONS implant, but before it comes to that, I have other things to try, like better busting with shrooms/LSD or vitamin D3 regime.

Daily Life & Coping:

How do you manage your daily life during clusters?

Since I'm receiving benefits and I'm not working anymore, the attacks are way more manageable. I have time to rest in-between. I am pretty house-bound, and the activities I do, are mostly ones I can do from the couch. I do have the feeling I have to get my life back on track though, and I think that is where I am kind of stuck. I've accepted the pain, the lack of energy, but I know I can also become stronger again and be able to live a bit more! And who knows, work sometime again!

What non-medical strategies help?

Coffee can sometimes take my shadows away for a bit, vaping DMT can abort a shadow as well sometimes and like I said above, shrooms did help me a lot. During an attack I often use something cold to cool my eye. It does give a bit of pain relief or distraction.

How do you handle work/family responsibilities?

I don't work at all anymore. Family responsibilities I just can't do anymore. Thank God I don't have kids, I can sometimes barely take care of myself! It did take a lot of time and effort to make my family try to understand my disability. I think it is clear for now, although I do notice that they can't always keep in mind that because I don't work, that I also don't have all the time to plan activities. Traveling and social contacts costs me a lot of energy and I think others just cannot take that in mind. “She has all days off, since she got nothing to do, she can come visit us/stay over.” Well surprise, surprise: I can't!

Best way to explain to others is that having a chronic disease is like having a full-time job.

One you can never take a day off from, or call in sick to.

I'm also at a point in my life that if someone just won't try to understand your situation or doesn't take it seriously, you can better cut them out of your life. Sounds harsh, and of course it's not something you would easily do, especially with family, but I'd rather have a supportive chosen family than an unsupportive biological one. Choose you.

Always!

Any lifestyle changes that have helped?

Even though relaxing is a huge trigger for my clusters, learning how to relax again did help. Keeping yourself forever busy, to experience as less headaches as possible, is not something I could have kept up with. Rest is important and stress, both physically and mentally, will f*ck with you.

Support System:

Can you tell us about your support system?

I don't know if I would have still been here without my psychotherapist, but my biggest support is my partner! We met when I was in the beginning stage of getting cluster headaches, but it wasn't ruling my life yet.

He was there when I got my diagnosis, tried all the treatments, became suicidal, financially unstable, and through my journey to receiving benefits. We've had some rough times, which is only understandable! I still don't know how he managed to handle going through lots of grief and still stayed next to my side. A year ago, I moved in with him and we tied the knot. I am forever grateful for him being there for me, supporting me wherever he can and always listening.

While with my parents I have the feeling I have to give a yearly explanation about how this condition affects me and my life, he never forgets or sometimes even reminds ME that what I am experiencing is hard!

How do you explain cluster headaches to family/friends?

Well, there are four things to explain:

The physical pain, the mental load, how both affect your life and what your triggers are and how they work. It's a lot!

The physical pain for me feels like someone is trying to push my right eye into my skull, with full force, while at the meantime someone is hanging me from my hair or is trying to pull them all out. My nose is blocked very badly during an attack which gives even more pressure on my head. The tension it gives in your muscles, the way you cannot relax or sit still.

This all has a huge impact on you mentally and physically. There is a reason why they call it suicide headaches. When you experience the most painful attacks, most of the ways you’re thinking of stopping the pain, are ways to end your life. At some point you know the pain will stop again, but then there is also the mental load of always feeling drained and being tired. It affects your mood, concentration, memory and lots more! Not only enduring pain takes a huge toll on your energy level. Since sleep is a trigger for most of us, we’re not able to sleep through the night. Waking up sometimes over 3 times a night in agonizing pain, only to fall back to sleep again, over and over.

Both affect you a lot. For example: the physical pain makes your muscles always feel tense and sore, from enduring the attacks, while the mental load makes you always be aware for “the Beast”. Fear for your next episode or the next attack, fear to go to sleep, fear to go out of the house. But also losing fear for death, maybe not being suicidal but having passive suicidal thoughts.

Lastly it can really help to explain your triggers to close ones. They differ per person, I even have them switching sometimes. I recently had a friendly neighbor calling me up in the morning, or ringing my doorbell, which would disrupt my sleep and cause a cluster attack. I had to confront her to stop doing that before noon, because at that time of the day is when I’m most sensitive to my triggers. I do notice that people tend to forget or “making up” triggers themself. My mom still very often thinks stress and hormones are a trigger, but there is no correlation to those two

What kind of support has been most helpful?

The mental support. Find yourself a psychotherapist, a GP who really listens to you, and

I can't say enough how meaningful talking with fellow clusterheads is!

What do you wish people understood better?

1. It. Is. Not. Just. A. Headache.

2. What experiencing extreme pain does to you. When I tell people I experience only 10-30 minutes in pain per day (and not even every day) it sounds very manageable. But 10 minutes of pain, or even just the use of medications can tire you out very much!

3. Not “having” to work isn't like a vacation.

4. That waking up 3 times a night in agonizing pain, isn't the same as getting out of bed 3 times a night to take a piss, Karen.

What advice would you give to someone newly diagnosed?

Find yourself a support group, go to a specialized neurologist, and keep in mind that living and self-care is more important than working or what others think. I cannot say enough how this disease is like a full-time job. Don't under exaggerate your pain and symptoms, both physically and mentally!

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

Even though it's shitty what brought us together, I also see it brings us a lot of empathy and love. You kind of get forced into it, but I've never met as emphatic, loving and open-minded people as I have in the cluster community!

Thank you for saving my life and I just know of many others as well!