One step at a time…

It was 1995, and I remember vividly the first migraine I experienced. I knew what it was to have headaches sometimes but this first aggressive nauseating attack I will not forget. Over the course of the next 4 or 5 years I experienced migraines on a regular basis but I never got an accurate diagnosis or the right medication prescribed. After all, migraines do not run in my family. Finally in 1998 I got Imigran prescribed, the European equivalent of Sumatriptan, and it was the first time in nearly 5 years that something actually worked and since it worked so well, it felt as if I had conquered these migraines and could ignore them going forward. How wrong was I!

Curiosity to other places and countries to work and live stimulated my move in 1997 from the Netherlands to the UK, then in 1999 to the Silicon Valley in California. I was employed by one of the larger Accountancy firms, I was ambitious and worked hard, and unfortunately my migraines got more frequent. Without having any knowledge or education about migraines, the medications, and the risk on medication overuse, I took more and more Maxalts.

Due to the high number of Maxalt tablets I picked up every month from the pharmacy I got an invitation in 2003 from the healthcare provider to join a headache management meeting. I was tempted not to go but the feeling that this could help me was stronger. The meeting was actually an eye opener, it was the first time I talked with other fellow migraineurs and learned more about migraines, the fact that it is really a neurological illness without a cure, headache management strategies, medication overuse risks, and preventive treatments. From that moment onwards I tried to learn about migraines as much as I could, and I never stopped educating myself.

But I was stubborn and it still took me a few more years for to realize and acknowledge the importance of a headache diary. In a way I was still in denial that something serious was going on. I also thought I could more or less remember the frequency, the severity, and the triggers. Step by step I got used to the habit and realized that without actually writing it down and analyzing it, it was impossible to create that necessary insight in my own situation. For the last 3 years I maintain very thoroughly the occurrences, the number of meds I to take, and I note down the specific circumstances and triggers as far as I can figure these out. I tried, with a varied level of success, different preventative medications, acupuncture, biofeedback, Botox, Prednisone, Cefaly, nutritional supplements, and am continuously making step-by-step lifestyle changes.

For the last 4 or 5 years my migraines are episodic, on about 9 days per month I have migraines, most of the time a Maxalt works, and sporadic I have to take a Sumatriptan injection. I take daily Propranolol as a preventive medication, and the supplements Magnesium, Fish Oil, and Vitamin B2. In the case I take too many Maxalts in a short period of time I will suffer through a migraine attack without taking any meds. This is about 48 hours of immense pain, nausea, vomiting, and without being able to hold water or food down. Needless to say that it takes a number of days to recover from this but after such an episode I am sometimes one, two or even sometimes three weeks (very rare) without any migraine. A phenomenon I still struggle to understand but every extended period without migraines I welcome very much!

Something my husband and I really love to do, traveling, is triggering very easily migraines. A potential jet lag, time difference, a disturbed sleep pattern or just a walk during a city trip while not being rested enough will unfortunately already do the trick. Driving or riding in the car for an extended period of time could contribute to a potential migraine. Or doing too many activities on one day without taking time for myself is another one. Busy days with appointments, having nice dinners in noisy restaurants, are quite challenging. Strenuous or even medium exercise, specifically in hot weather is out of the question. Hot weather in general is already risky enough. And not to forget stress, any change, good or bad, in my routine can trigger a migraine. What may trigger a migraine on a Monday may not trigger a migraine on a Tuesday. It is very complex to manage and to determine which activities are acceptable on any given day. It is truly a never-ending learning process.

I understand migraines much better now. I am constantly monitoring the current situation and the information I am gathering in the diary. If a business venture is not working according plan, its management will need to do something about that. That is what I am trying to do now with this part of me that doesn’t work very well; monitoring, analyzing and managing the data and steer my migraine journey in a better direction. I try to influence the factors that I can influence and try to accept the ones I cannot and learn to live with them. This enables me to feel in control, do research, and explore options before I see my neurologist or other specialists.

My support system is tremendous, I have a very supportive husband; together we learn as we go. We go 5 steps forward and 3 steps back. A lot of the progress I made is thanks to him and he pushed me sometimes to make changes in my lifestyle or to try something different, and certainly he pushed me to maintain the diary. He will always support my decisions and takes amazing care of me. I don’t have to feel guilty anymore, which is a great relief. This is still hard, guilt is a very stubborn companion, but I am slowly getting there.

I have lately been more open toward my friends and family about my migraines, explaining what having migraines means for me, set boundaries, sometimes I have to decline invitations but I am explaining why. I have a great circle of friends that is very supportive and they understand the situation better now I am talking more freely about it. Luckily I don’t have the experience that friends make comments like “it cannot be that bad” or “just take a painkiller and move on”. I understand that this happens quite frequently to other fellow migraineurs. The empathic attitude of my friends will give me the courage to make commitments and don’t feel bad in the event I have to cancel them.

In the beginning of 2013 I started contemplating to stop working. This was a huge thing for me. I always wanted to have my independence, and I simply liked my work. About 10 years ago I started to realize that a career, partly due to the migraines, probably wouldn’t happen anymore. I had to accept that and let go of certain dreams, so I did. These last 5 years I focused on performing my job with as little stress as possible, set boundaries and don’t feel always responsible for everything. In August 2014 I actually resigned. The timing was good, I was mentally ready for it and it would give me also the opportunity to spend more time with my elderly parents in the Netherlands.

Since my retirement I have been focusing on my one and only mission, to live and be as healthy as possible within the constraints of my condition. I am less focused on expanding my social circle, going out more or trying out new fun activities. I focus on my health, exercise, family, parents, and everything else I play by ear so to speak. If I am pain free and have energy enough to participate in certain social events, I will do them. If I cannot handle it, I don’t do them. Unfortunately the frequency and severity of the migraines did not change much since I am retired, I had secretly hoped for that but I don’t let this deter me from my goal to live as healthy as I can.

I have tried not to vent in this story since I think it is more constructive for myself not to dwell on the dark and negative sides but trust me, there are times that I wallow in self-pity, I feel sick, depressed and hopeless, and in that state of mind I tend to forget everything I learned, how I should cope and deal in a positive manner with a life in which migraines are always on the forefront and playing such a huge role. It is hard work and it is also hard to keep courage all the time but I take it one step at a time!