This microdosing against cluster headache experience report is written by Marjo ‘t Jong-Montijn. She is sixty years old, and has been a cluster headache patient for most of her life. She is currently participating in our Microdosing.nl cluster headache research project in collaboration with Nobism, sponsored by our partner webshop Microdose.nl and Freshmushrooms.nl. We have been very impressed with the story she told e during one of the coaching consultations. We are very grateful to Marjo for sharing her story about microdosing to combat her cluster headaches with our Microdosing community. Her report offers a good understanding of why we started this research project.
Marjo’s experience with cluster headaches
I have probably had cluster headaches since 1984, when I was twenty-five years old. I didn’t get an official diagnosis until eight years later, during what would probably have been my fourth episode.
At first, I thought I got my severe headaches from working too hard, and had to call in sick at my job as a nurse. Things especially went wrong when I worked night shifts, so I was advised to find a job with more regular hours. So I retrained as a dialysis nurse, where I only had daytime- and early evening shifts.
In 1992, two days after my son was born, a cluster headache episode started. During this period, I read a magazine called “Hoofdzaken”, which featured an article about cluster headaches. It included a list of all the symptoms, and I instantly recognized it. I told my husband: “that describes exactly what’s going on with me!”
Two months later we went to an information meeting. After the lecture we talked to some doctors. Upon hearing my story they confirmed that it could be cluster headaches. Despite this, I first had to get a referral from the doctor before I could get an official diagnosis. He didn’t believe me at first, and said it was usually men who get cluster headaches. Since my early youth I occasionally get migraines, so the doctor put my headaches down to that.
At the time, I would get four to five cluster headaches a day, which would each last at least two hours. The only way I could endure them was by pacing up and down the room, or by walking outside in the fresh air. To convince the doctor of the severity of my symptoms, I went to his practice during the peak of an attack, and told him he should see for himself how bad it was. He was shocked by the state I was in, and referred me to a specialist straight away.
After I finally got an official diagnosis, I went to Leiden University Medical Center (LUMC) for treatment at Dr. Ferrari’s neurology outpatient clinic. As an aid for acute attacks, I was given medicinal oxygen (O2). At the onset of an attack I would administer seven liters of O2 per minute, with a maximum of fifteen minutes at a time.
The oxygen worked well. The attacks didn’t last as long and the intensity dropped to a tolerable level during the fifteen minutes of oxygen. Usually, the headache would be completely gone within forty-five minutes. Besides oxygen, I was prescribed Imigran injections and Imigran nasal spray, but the latter didn’t work for me.
I use Imigran or Sumatriptan injections as little as possible, because I really don’t like the side effects (cramped muscles and shortness of breath). I now only use it when I go out and it is impractical to carry the oxygen bottle with me, like when I take a walk in the countryside, or attend a concert. I also use an injection if an attack doesn’t go away with oxygen. Fortunately, this rarely happens.
Between 1984 and 2017 I had the episodic form of cluster headaches. Episodes lasted an average of three months with intervals of about eighteen months. A new episode would usually come up in spring or fall. During these episodes I was unable to maintain my full-time job as a nurse. I tried to get a part-time contract, but my employer didn’t give me one. The company doctor wasn’t very supportive of me either.
I saw no other possibility than to resign, which meant that I lost my chance of getting any benefits. In the years that followed I worked as a school cab driver and later as a dental assistant. I was also dealing with post traumatic stress disorder (PTSD), and I was declared ‘unfit for work’ in 2003. Because of my health problems, I had started to work way less than I did before. This resulted in me only getting a very low monthly payout from the unemployment agency.
Cluster headache support group Tacsweb
In the era of social media, I joined Facebook and discovered the cluster headache support group Tacsweb. I was moved by all the recognition and understanding from people who were going through the same thing as me. I also found tips on how to use oxygen and my other medication more effectively, and was also introduced to other possible treatments.
To prevent my cluster headaches from occurring, I had started taking Lithium. This also helped me a lot with my depression and PTSD. Initially, it really seemed to work. I was free from cluster headaches for four years. Unfortunately, it just stopped working. My headaches came back. They occurred ten to twelve times per day, and were even more intense than before. With my oxygen tank, I still managed to shorten them to about thirty minutes. Without oxygen, they would easily last well over an hour.
In 2015 I was given Verapamil, built up to 520 milligrams per day. It helped somewhat, but it had so many side effects (severe abdominal pain and shortness of breath) that it barely improved my quality of life. ECGs were checked and came out okay, but they did show I was as short of breath as a severe heart patient. I had about ten attacks every day during that period, with hardly any break in between. It made life almost impossible and left me severely exhausted. Fortunately, the attacks stopped in December 2015.
Episodic cluster headache turning chronic
In May 2017, a new episode started and hasn’t gone away until today (January 2020). It looks like my episodic cluster headaches have become chronic. In May 2017 I got a Greater Occipital Nerve (GON) injection. This didn’t cause any side effects, but no noticeable effect either. I then tried Topiramate, built up to 100 milligrams twice per day. This managed to make the peaks of my attacks slightly less severe. The attacks were also somewhat shorter, at about 30 minutes. However, they continued to recur ten to twelve times a day.
Nobism: patient driven research
In 2017 I also started using the Nobism App, to record my attacks and medication. That way I got a clear view on how my attacks were distributed over the month. Nobisim is a research platform that maps out the efficiency of all cluster headache treatments through a tracking app. The image below shows my tracking of December 2017. At that time I was still working as a volunteer, and had hobbies that I tried to keep doing.
Eventually, I became seriously exhausted by the attacks and a lack of sleep. At night, I would often get four attacks, after I already had gotten six to eight of them in the daytime. When going to bed, I felt like I really wouldn’t care if I would not wake up the next morning. When I mentioned this to my neurologist, he was concerned about me having suicidal thoughts. I told him that I wouldn’t follow through on those thoughts, but just really couldn’t go on like this much longer. So in February 2018 I started a Prednisone tapering treatment. I started with a very high dose of 60 milligrams, and reduced this a little, every five days.
My timeline of February and March 2018 shows that Prednisone really helped. However, as soon as I lowered the dose too much, the attacks came back just as intensely as before. I was happy it had helped just long enough to grant me a few weeks of decent sleep. Unfortunately, the neurologist told me that it was not possible to give me high doses of Prednisone for an extended period of time because it could have too many health consequences.
Treating cluster headaches with microdosing
I found out that microdosing often helps patients with cluster headaches, so I wanted to try that. I took Magic Truffles (containing psilocybin), but this didn’t have any effect on me. I later read in the Cluster Headache Support Group that this was probably a result of me still being on Topiramate and Lithium. These medications are known to block the effects of psilocybin.
A new Prednisone tapering treatment in January and February 2019 had the same effect as it did in February 2018 (see timeline above). After that, the attacks increased. In the summer of 2019, after a lot of research on Tacsweb, I decided to try Magic Truffles again. However, this time I would wean off Topiramate and Lithium to increase my chances of success. I had to do this in consultation with my neurologist and psychiatrist. By the end of September I was completely free of Topiramate and Lithium. At that time, the attacks had become incredibly severe. Apparently the medication had done something after all.
Microdosing.nl cluster headache research project
I started with 3 grams of Magic Truffles every day. Every fifth day, I would not take a dose and see if the headaches would stay away. This apparently works for episodic cluster headaches, but not for me; the attacks didn’t stop.
After consulting with Rogier Koning of Nobism, I got in touch with Hein, founder of Microdosing.nl and Microdosing coach. Hein is in contact with Bob Wold from the US-based platform Clusterbusters.org. They both suggested taking a higher dose of Magic Truffles once every five days. I joined the first Microdosing.nl CH research project that Hein had founded together with Rogier, with Magic Truffles sponsored by the webshop Microdose.nl. I started with four grams every five days, which I then increased to five, and eventually seven grams. When I take mushrooms, I am free from any headaches for about a day. The days after that, the attacks gradually come back. The day before my next dose, I usually have five or six attacks. So however promising it looks, I still haven’t found a remedy with lasting effects.
The mushrooms give me more and more side effects, like severe nausea and a dizzy feeling in my head. This sometimes makes me feel anxious, afraid to lose control.
We tried to solve this problem by replacing magic mushrooms with 1cP-LSD drops. I tried that in December 2019 with a dosage of 32 micrograms and twice in January 2020 with 48 micrograms. For me, it works similarly to magic truffles. But the effects don’t last nearly as long. So now I am back on truffles, even though I continue to experience them as unpleasant. My last dose was 7.5 grams, and I’m planning to lower the dose next time.
Conclusion so far
Mini-doses of Psilocybin and LSD both work for me. They make the attacks less frequent and more tolerable. However, they certainly haven’t stopped my attacks yet, even though many cluster headache patients report the contrary. Perhaps because my cluster headaches are chronic?
I find it very upsetting that I cannot discuss the use and dosage of Magic Truffles, Magic Mushrooms and LSD with a doctor. Therefore, I consult with Hein from Microdosing.nl and Rogier Koning from Nobism. I will have to continue searching for what works for me through self-help groups and social media.
So far, no legal medical research has been conducted into the efficacy of these substances. Psilocybin is currently being tested as a treatment for depression, but these clinical trials only take place on a small scale. Thorough investigation of psychedelics against cluster headache will most likely not happen for a while, because there is no financial support for this. In other words: the medical industry will not be able to make profits from it.
And so I keep searching and hoping for a better and final solution. To be continued…
Marjo ‘t Jong-Montijn, chronic cluster headache patient
Do you want to read more about this topic? You can read about the medical applications of microdosing on our information page.
For more information about the Nobism App, send an email to firstname.lastname@example.org.
For more info on new cluster headache research projects, write us at: email@example.com with the subject “Cluster headache study”.
Microdosing Institute is not responsible for the content of the experience stories, we cannot verify them for truth, correctness or accuracy. What is described is not necessarily supported by scientific evidence or by doctors or experts. The experiences should in no way be read as advice or recommendations.