Living with migraines

September is migraine awareness month. When you’ve read along for a while you know that I also suffer from migraines and have to live with it. I am currently adjusting my treatment plan and read up on current research and medications and I figured why not share a bit. Maybe it helps one of you.

  craftaliciousme seeking creative life living with migraines

My personal migraine story

My first migraine attack was summer 2004. I remember quite clearly. I was looking at the water during my summer holiday and everything just glimmered. I thought I had rubbed some sun screen in my eyes. However after coming back to Berlin it didn’t stop. Obviously I hadn’t used sunscreen. And it continued happening every once in a while throughout the next year. Today I know it was my first experience with scintillating aura.

In Summer 2005 I started dating Mr.  and he urged me to go to an eye specialist to have it checked. Unfortunately she was one of the worst doctors I ever had and did not know right from wrong. After I switched eye doctors I was pretty soon transferred to my neurologist and after running every test possible she told me I was having tension headaches with a tendency to migraines but it’s not quite clear (For some reason I never mentioned the aura I experienced). I should come back when it gets worse.

It did get worse and by December 2010 my colleagues had to cover a function I was in charge of because I lay in a hotel bed trying to survive. In January 2011 Mr.  had me submitted to the emergency room on a Sunday night when I was trying to poke the pain behind the eye with a fork. I wasn’t quite aware.

When I was finally diagnosed in 2011 I didn’t really understand what was going on. I’ve had heard of migraines of course and my mom and little sister seemed to suffer too and just started seeing a research facility at the local hospital. But other than that we really had no clue what migraines really are and where they come from.

I started to read up on it and to learn more about this chronic disease. I kept a calendar and tracked all possible things. I also played guinea pig and tried to breath through attacks not using medication to understand what’s going on. Then there were phases were I just ignored it. Later I just started living with migraines. Recently I have spent more time informing myself again. New medication has just been approved, new studies just published and so I am reading up on latest developments. 

Migraine Facts & Figures

Research has moved forward a lot in the last ten years. Here are a few facts I found interesting but also alarming:

  • WHO is listing migraines as 7th most obstructive diseases worldwide. If counting headache in general it’s number 3.
  • Migraine patients are 1.5-2 more prone to heart attacks and strokes.
  • Migraine patients have an increased risk (3-7x) to suffer from depression, anxiety or even to commit suicide.
  • There are 38 gene locuses with 44 variations known to increase the risk for migraines. This gene locuses are responsible for hypersensitivity to sensory input and overstimulation.
  • There are 367 different main diagnoses for migraines. No others neurological disease has so many classifications
  • Woman are 2-3 times more effected than men. Studies show the reason is a faster and more active stimulus processing of the central nerve system.
  • Newest research shows that lack of blood and energy supply may be crucial in developing a migraine attack

One thing I found most interesting and what is somewhat a newer take in the scientific studies is that the brain itself is completely fine. However the brain of migraineurs can very quickly and very effectively differentiate stimuli. Everything too fast, too many, all too sudden, all that suddenly enters the nervous system will lead to a strong activation of the nerve cells with the result that the energy reserves in the nerve cells are exhausted. This always leads to the derailment of the nerve function, it can collapse and a migraine attack could arise.

If such a malfunction of the nerve function occurs, inflammatory substances can be released on the arteries of the meninges. These lead to an increased sensitivity of the meninges. Each pulse causes a throbbing, hammering migraine pain, every movement of the skull hurts. The overall know symptoms of a migraine.

I personally can totally relate to that. It drives me crazy when I hear the same sound for a period of time. I can not watch when someone quickly zapped through tv channels, the flickering lights of certain stores drive me crazy and should be forbidden in my humble opinion. When there are already other triggers in place I most likely will get a migraine.

And I do believe with everything going on today in our lives we are exposed to more and more stimuli in every moment of our life. We do not stand at the bus stop just looking around, watching what is going on and soaking up the sun – no we scroll our phones while listening to podcasts trying to learn something. When we cook dinner we watch Netflix. All this multitasking is just overheating our brains. Our brains just don’t have enough energy to keep up it seems like. So it comes as no surprise that I often crave high calorie food during attacks.

Tool, Tips & Links to understand your migraine

In the last eight years I have been able to understand my body and my migraine more and more. I am still learning something new every day. I have figured out what works for me and what doesn’t (I think this will be a separate blog post). I mainly did so by using apps. Here are a few I can recommend. Most of them are in German as I need to pass the info on to my doctors but let me know if you have something you can recommend and I’ll add it to the list.

  • PainCal – a German app. The one I use and found was having the most options to track various info. Also export to pdf and cvs and cool charts to show your doctor. Support team is great and you can also ask for stuff to program in. Did that and it was done. Highly recommend and it is totally free.
  • Migraine Insight – It was a real eye opener for me when I started tracking the triggers. Not really a pleasant one as I discovered this way that too much chocolate may not be helpful. Also free to use.
  • Migräne-App – it’s the official app from one of the research facilities in Germany. It also has a calendar to track your attacks. However I use it for the screening of when to use your triptans. Sometimes I am not quite sure if it is already time for popping pills and their questionnaire is really helpful. They also have small videos to see how the different scintillating auras look like. Could be very helpful for people not quite sure what is going on or to help people understand how you feel.
  • migraene_superhelden – an interesting Instagram account all about migraines (in German). Bianca also has a Podcast and her book comes out soon.

There are times when I am really glad that I’ve a migraine instead of any other chronic diseases out there. I don’t want to imagine living with diabetes. However then there are days when I wonder why on earth it’s me. If you also are a fellow migraineur I’d love to hear if you have any recommendations or and experience living with migraine. Please share in the comments.

Hope you have a wonderful Sunday evening and migraine free month ahead


5 thoughts on “Living with migraines

  1. I am so sorry. Headaches are awful and can impact your whole sense of well being so intensely. With migraines that is even worse (I can imagine). Thanks for telling us a little more and listing some good resources.
    I am wondering if they would be useful for my friend with chronic headaches as well?

    1. Thank you so much.
      I believe once you understand your body better it always helps. I would recommend to your friend to at least start tracking triggers and situations when headache occurs. It is really eye-opening. Once you know about what could trigger a headache you may find solutions to avoid or at least take counter measures. All the best, Tobia

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