“Keep on Going, Don’t Give Up, and Be Strong”: Migraine, Cluster Headache and a Difficult Journey Through the Healthcare System – A Patient Perspective

Migraine and Cluster Headache

In this RELIEF interview, Sereen Siff Damgaard provides a patient perspective on what it’s like to live with migraine and cluster headache. Image credit: unkreatives/123RF Stock Photo.

Editor’s Note: Born in Denmark, Sereen Siff Damgaard has lived with debilitating migraine for decades and cluster headache for over five years. This inspired her daughter, Simona Denise Frederiksen, to devote some of her research to studying headache. In this interview, Frederiksen, who is now a postdoctoral associate at the University of Calgary in Canada, asks her mother about the difficult journey she had navigating the Danish healthcare system, how headache has affected her life, and the advice she has for others suffering from headache conditions. This interview was conducted in Danish, translated into English, and then edited by the RELIEF editors for clarity and length.

What is it like to live with both migraine and cluster headache? How is your life affected by these conditions?  

I have suffered from headaches for many years, since I was around five years old, and have not been able to get the help I needed. I am now 56 years old and the first thing I do in the morning is check in on myself and ask “How is my head doing?”, “Do I need to take some pills?” and “What kind of medicine do I need to take or can I do without it?”

I have had to leave many social events I was attending. Sometimes I even had to go to bed because I could not bear the noise, smell, and light. The migraine attacks became worse over time, and then my cluster headache attacks started. Things got worse and worse because of factors in my life like unhealthy relationships, stress, or a job where I was being harassed.

Can you elaborate on how living with headache affects your social relationships, family and working life, and ability to function?

As far as social relationships go, people couldn’t accept that I sometimes had to opt out of social functions, but I had to because I was not able to get out the door. As for work, I sometimes had to drive home from work, or if I got an attack early in the morning, then I had to report myself sick. Otherwise, I have gone to work with debilitating headache, just doing what I needed to, and then I went home and to bed. Not all employers understand that they have an employee who has this kind of pain, because you cannot see it. Headaches have certainly affected my ability to do leisure activities as well. I used to run, but I cannot do that when I have a headache as I will develop more pain and more symptoms.

Sereen Siff Damgaard

Aside from the headache pain itself, what other symptoms do you experience?

My memory is weaker, and my vision is blurred. I thought this was due to stress and other things happening in my life. When I have an attack, I search for my words – it can be a simple word like banana.” All of a sudden, I can’t remember the word and have to describe what it looks like. Or when I am meeting with someone that I have known for 30 years, I can no longer remember the name of their children. It makes me frustrated.

How did your symptoms progress over time?

My symptoms have changed over time. Every time I had a migraine attack, it was accompanied by vomiting. This lasted for almost ten years. Then the vomiting stopped, but when I turned 18, I experienced a throbbing migraine where I was also sensitive to light, sound, and smell.

Later, I developed cluster headache. When I had my very first cluster headache attack, my head felt like it was about to explode. I experienced pain on one side of my face and still do. Also, my eyes water, my nose runs, and my face hangs down. I’ve started to vomit again during my attacks. This lasts for 16 hours, then I have a little break, and then 16 hours of vomiting again. It’s unbearable. I feel like an invalid those days, and I can’t do anything. The pain of cluster headache is something I have never experienced before – it cannot be compared with migraine.

If you think about your journey from the onset of your symptoms to receiving an accurate diagnosis, what did that look like? How many years did it take?

It has been a struggle. When you say diagnosis, I first got one when you started to study headaches at Lund University around 2015. I have struggled with many, many doctors. Actually, I won’t say I have struggled with them because I haven’t received any help. I felt like they made fun of me, which has frustrated me throughout the years. The doctors my mother and I visited did not take my pain seriously and none of the pills they gave me helped. I now have a good family doctor, but what is it worth when it is so hard to get a referral to a specialized headache clinic?

At the time I developed my first cluster headache attack, we didn’t know what it was and drove to the emergency room. Here, the doctor examined me, and prescribed eye drops and penicillin since there was something hanging out of my eye. But this did not remove my headache pain at all.

I had a scheduled appointment with a specialist physician. You and your supervisor told me to ask for oxygen because you were convinced that what I had was cluster headache. When I asked for oxygen, the doctor laughed at me, and said that oxygen is probably something they use only in Sweden. I felt frustrated again and asked to get a referral to a specialized headache clinic. The doctor laughed again and said that there was such a long wait time for that, but that I could get referred to someone at Roskilde Hospital.

I called you out of frustration. Your supervisor came up with a name of a neurologist at Roskilde Hospital, and lucky for me, this was the doctor I got the referral to. Immediately when I walked into his office, he looked at me and said that I had cluster headache and that my attack was not over yet.  My tears started to fall. I thought to myself that I had finally found someone who understood my pain. Because of my previous experience, I asked if oxygen was something they use only in Sweden and he replied that there was a company in Denmark that provided oxygen and that he would get the secretary to send oxygen to my home. I also showed him my pills and he said I shouldn’t take them because they didn’t work.

So all of a sudden, I was sitting in front of someone who understood. But this was probably only six years ago, so I was 50 years old at the time. It is a pity that I wasn’t able to get for so long what the headache specialists have found to be effective. It is sad that there is so much research out there but that it does not necessarily benefit us patients in need. I think better collaboration would help to bring the research closer to the patients – what is the point of doing research and spending all this money on it if it does not reach us?

What did you do to stay motivated?

I’m not a person who gives up easily. Before you started working on headache research, I was frustrated that I couldn’t get help in Denmark. It did not matter what I did, or which doctor I asked. I couldn’t get a referral to the right places for professional help.

Therefore, I took matters into my own hands and thought I would have to go abroad somewhere. I’m not afraid of traveling alone, and I decided to go to India; I am not sure why I chose India. But you can practice yoga and meditate on the beach. So, I booked a trip to India where I went for long walks. Here, I met a doctor and a massage therapist. I probably got 21 massage treatments focused around my head but also my neck, lower back, and ankles; I have as much pain in my neck as in my head during attacks. The massage helped me to have fewer headache attacks.

In the end, who would you say helped you the most? And are you having any struggles now?

Well, Simona, you’re the one who has helped me the most – you and your supervisor – I’m so grateful for that. There was also the neurologist at Roskilde Hospital but he retired. I was sent to a different hospital and it was and is like starting from scratch. Because my headache attacks have changed again and I am now vomiting too, I need to take injectable sumatriptan to get some pain relief but I have struggled to get my hands on it since he retired. Before COVID-19, I also needed it for traveling, as the pressure in the airplane gives me cluster headache attacks. After my neurologist at Roskilde Hospital retired, I was frustrated when going to a new neurologist, who seemed confused and not able to truly understand the different types of headache. I chose not to go back again, and to go back to my family doctor.

What strategies and tools do you use to prevent and manage your headaches?

I have been working hard on prevention. I think about getting my sleep, what I eat and drink, and then I practice yoga. I also take magnesium and vitamin D, which has helped me. For when I have my headaches, I use oxygen, sumatriptan, and Treo/Triplo [which contain aspirin and caffeine]. When the depression escalates after the cluster headache attacks, I think about getting enough sunlight and exercise, and then I ask my relations if they want to go for a walk.

Otherwise I try to stay calm and think about where I work and who I am spending my time with – I would rather have a few good friends and get fewer headaches – and I have also left bad relationships and poor work environments. Then I take care of my little family. Finally, I also want to find out more about CGRP inhibitors, which are drugs that you have told me about and that I have read so much about [see related RELIEF articles on CGRP drugs here and here.]

What advice do you have about finding the right doctor, functioning well, and maintaining social relationships, for someone who was recently diagnosed with headache disorders?

I would feel sorry for someone that has to live with these disorders when it is so hard to find one’s way through the healthcare system – that is at least the case in Denmark. I hope a person has a good family doctor and is willing to fight until they can get the right diagnosis and treatment. Then I would recommend getting enough sleep, making diet changes, meditation, and practicing yoga. And be mindful of your relationships, and of your work environment – is it a place that makes you happy?

It’s not always easy to maintain one’s social relationships with these disorders. I have maintained my relationships by being open and honest. When I have my attacks, I send pictures showing how I look, even if it is not fun. This way, my friends and family can better relate to it and understand it, as they wouldn’t normally see me when I am having an attack. On my good days, I nurture my relationships. But I also tell people when I am not feeling well and what I suffer from. I am being honest.

Keep on going, don’t give up, and be strong.

Simona Denise Frederiksen is a postdoctoral associate at the University of Calgary in Canada.