This is My Story

By Yvonne (Guest Writer) –

My name is Yvonne, and I suffer from migraines.

When I was 15, I had my first migraine. I don’t know what triggered it. I just remember that I was home, with my siblings, playing and watching TV. Everything was fine and dandy until, all of a sudden, I had this severe headache that I just couldn’t shake off. I took two Panadols and told myself it would go away and tried to return to the fun but it didn’t; it worsened.

I was soon curled up into a ball on the bed, crying in anguish, my vision fading, while my brother desperately calling my mum who was at work. My parents got home as soon as they could and they took me to hospital where some tests were done and they found out that I had a viral infection but the doctor had trouble linking that to the headache. So I got some medicines and I was out. Did the infection trigger the migraine?

A while later, after I had gone back to school, I got another migraine. I was in boarding school, so I couldn’t call my parents directly, and my school had a long history of not taking illnesses seriously. They still don’t.

So, I’m having this splitting headache, I can’t really see, I’m having vertigo too, and the teachers think I’m pretending and so they won’t give me a slip to go to the sanatorium. At this point I’m pissed as hell because I don’t know what’s going on, I could as well be dying because it could be meningitis (I have an aunt who died from that), who knows? So I refuse to go back to class and a stand-off ensues.

It sounds so dramatic, but it wasn’t really. I got really lucky because one teacher arrived shortly after and saw that I was in pain and demanded I be given a slip to go to the sanatorium, and so off to the sanatorium I went. The issue wasn’t resolved there, so the nurse had to call my parents and they came and took me to the hospital. The hospital ran some blood tests and concluded that they had no answer for me. And so I went back to school, with the same problem.

Over time, my performance suffered. My grades dropped. I couldn’t concentrate in class. I began having memory issues. As time went by, the headaches got worse and worse, and they would last for longer and longer. They would come at any time, at a moment’s notice. There would be no telling what would trigger them. They would just appear and I would have to deal with it.

I soon went into university, with the same issue on my back. I had given up on trying to find an answer because I’d either find doctors who didn’t bother to get to the bottom of the problem or find doctors who didn’t even believe me in the first place. However, I decided to give it one more try in a bid to save my GPA and, when I was seeing a GP for pleurisy, I mentioned the headaches and she referred me to a neurologist.

At the first appointment, the neurologist did a battery of tests to rule out other conditions, and, luckily, it was just migraines. Just migraines. I know I say ‘just migraines’ but, believe me, migraines are hell. I only say ‘just migraines’ because I’m thankful it wasn’t a brain tumour or something, because I wouldn’t know how to start dealing with a brain tumour. But migraines are hell. I wouldn’t wish them upon my worst enemy.

So now that I finally had an official diagnosis, I could finally be on a treatment plan covered by my insurance. I was put on Gabapentin and Vitamin B2, but that didn’t work out so well for me, so we had to change it. Next came Topiramate, it did quite well, reduced the headaches to about 3x a week, but not quite what we wanted because the goal was no headaches, so we decided to change that as well. We moved on to Amitriptyline, but I didn’t get a chance to stay on that one for an extended time because it caused me constipation and I already had an issue with constipation because I do have IBS as well, so I couldn’t remain on Amitriptyline. I did like it though because it was dirt-cheap; I felt really bad when I realized that it wouldn’t work out between us, and I didn’t even get a chance to see if it would work on my headaches or not.

At this point, the neurologist suggested Epilim, but Epilim is quite a nuclear option, and he did warn me of that. Epilim a brand name of Sodium Valproate, and in my undergrad research which I was working on at the time (I’m a scientist), I had worked with Phenytoin Sodium, which is in the same class as Sodium Valproate, as is Topiramate. These three medications are anticonvulsants, but valproate, phenytoin, and a third one called carbamazepine, are especially notorious for FACs (Fetal Anticonvulsant Syndrome).

What this means is that if you’re planning to get pregnant, you can’t be on these medications. Not only do they put the baby in danger, they also put the expectant mother in danger. Now, I wasn’t planning on getting pregnant or anything, but the potential side effects for Epilim were much more that the potential side effects for Topiramate, which is why we decided that the best option was to go back to Topiramate and try it for a longer period than I had been on it the first time and see if things get better. So I’m currently on Topiramate now.

The part about Epilim, I think it’s important that women with migraines note that because if you have migraines with aura, your birth control pill options are limited to the mini-pill because the combined pill increases risk of stroke and also often triggers migraines (the estrogen derivatives in the combined pill is what does this, the mini-pill has progesterone derivatives only). And, because the mini-pill also comes with its own set of issues, you may find that some women are not comfortable with it and so they aren’t on any pill or any other birth control method. Did the health/pharmaceutical industry do women dirty in birth control? Yes, yes they did. So much so that when it came to approving a birth control pill for men, they failed to do so because it had too many side effects, even though the list of said side effects was not nearly as long as the list of side effects women are exposed to by female birth control pills. Not even close! But I digress. This is about migraines.

Is everything okay now? No. Better, definitely, but not okay. The headaches are still there, but things are looking up. My hair is falling off, and no one can figure out why. The obvious answer to that was PCOS, which I also have, but as of last week Wednesday I was cleared of PCOS – you can sort of say I’m in ‘remission’ of it. All my tests came out fine, really superb actually, so it’s not that. I’m not malnutritioned, which they also ran tests to check because that can also cause hair loss and memory fog, but it’s not that either; those test results were also excellent, I passed with flying colours. So at this point it’s just been chalked up to alopecia. Is it stress? Is it a side effect of some of these medicines? Eh. I actually started having hair loss about the same time I started having migraines, don’t know how that’s related. So let’s just say it’s alopecia, for now.

I try to eat well. And exercise too. Diet and exercise are helpful in managing chronic illnesses, and I’ve tried to incorporate that. I’ve always had it down in this area, but sometimes I’m just so tired that I can’t actually exercise or make my own food. I actually went to the gym for six months, but that ended up worsening my chronic fatigue so I had to quit and stick to doing light exercises at home and just walking to walkable destinations. But, for the most part, I think I do just fine. It’s not so bad. I should probably eat more leafy greens. I’m in the habit of snacking, and my snacks are usually fruits, and my full meals are usually pulses and grains and sometimes some meat, and I normally have leafy greens like two out of seven days in a week and I’m trying to get that to be every day. When I’m home with my parents, we have leafy greens at almost every meal. I like that. They do subsistence farming, so my siblings and I are covered in that aspect when we’re home with them. And they give us produce to take back with us too! I live thirty minutes away from them, and I go every chance I get, which sounds like a lot but sometimes I’m so buried in work that time gets away from me.

Aside from diet and exercise, other things I have identified to be helpful is adequate sleep – which is ironic because I somehow developed insomnia, I don’t know how – and avoiding loud places and places with strobing/flashy lights. I had been prescribed melatonin for insomnia once, but that didn’t go down so well because it gave me sleep paralysis. I had never been so terrified.

I’m currently taking it slow, taking my medication, eating right, exercising appropriately, sleeping 8+ hours daily, drinking enough water, trying to get enough fibre in my diet, and learning to live life one step at a time.

How would I describe migraines to someone who’s never had one? Well, my migraines feel like someone is hitting my head with a hammer and, inside my head, there’s a grenade trapped inside a bomb waiting to explode. And there’s all these mini explosions all over the place before the grand finale, and you never know when that grand finale is going to be once the explosions start. There have been times when I’ve been unable to get out of bed because of the ‘explosions.’

It was in the morning, I was supposed to get ready and leave, but I literally couldn’t move. I couldn’t do anything that entire day. And the pain isn’t limited to your head, it finds its way to the rest of your body somehow. If you happen to have a migraine while walking or standing, you’d have to sit or lie down. It’s that bad. Some have to retreat to completely dark and silent places. When I said it’s hell, I wasn’t exaggerating. In fact, I may be understating it in my description.

My hope is that in the near future, science will be able to understand exactly how migraines work so that a cure can be formulated. As for now, we can keep raising awareness.


About the writer: 

Yvonne Wabai is a writer and scientist who runs her own blog, Randomly Creative. She can also be found on Instagram, Twitter, and Facebook.


 

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