MY MIGRAINE STORY

PERSONAL

TWENTY FOURTEEN

THE BEGINNING

From memory it was 2014 when my migraines started, I was 31-32 years old. At the time I had no idea they were even migraines. I just felt like I was hungover for 2-3 days straight, even when I hadn’t been drinking. I’d have brain fog, I was slow and tired, and felt pressure in my head. A hangover without the nausea. I now know that what I was experiencing was 2 of the stages of a migraine attack called Prodrome & Postdrome. There are 4 stages in total but not everyone experiences all 4 stages all of the time.

THE FOUR STAGES OF MIGRAINE

At the time it was happening every 2-3 weeks and only on weekends, so I put it down to Friday night drinks or takeaway food. I tried changing my ‘alcohol of choice’ and started to watch what I was eating, and nothing changed.

Because it wasn't interfering with my life all that much and I wasn’t in pain, I just put up with it.

Looking back there were a few changes in my life that could have triggered this all to start - I started drinking coffee for the first time in my life, I started using an Implanon implant as birth control, and I started working as a home lighting & electrical consultant in a dark studio surrounded by fluorescent lights all day (I’ll go into these things a little more further on in the story)

TWENTY FIFTEEN - TWENTY SEVENTEEN

THE EARLY YEARS & MY FIRST ONLINE BUSINESS

Throughout 2015 to 2017 I went long periods of time where I don’t remember the attacks happening often at all.

And in 2015 I started a side business making handmade baby milestone cards and home decor items, while working part-time, and also being a mum to a 3 & 6 year-old. The business was going well and I was loving it, but I was spending huge amounts of time and a lot of physical effort, trying to grow it to replace my job as I had big dreams of working for myself from home.

By 2017 it started to take its toll on my body and it was consuming all of the time I should have been spending with my family. I didn't realise it then but I was pretty stressed trying to keep up.

TWENTY EIGHTEEN

WHEN IT ALL GOT WORSE

Now 6 months into living in our new house the attacks were happening more often, and the headaches had begun.

These weren’t like any headache I'd ever had before. They would start with pain in my neck and at the base of my skull, and then this indescribable pain would spread to the top right side of my head and behind my right eye. Initially, they were manageable with Nurofen and Panadol but eventually, that didn't work.

I thought maybe it was the muscle tension in my neck and shoulders that had set off the attacks again, especially after all the strain I had put on my body making products for my business. I began trying self-massage and went to an Osteopath for a few months. This didn’t do anything to help.

REACHING OUT FOR HELP

I remember clearly when it all reached the point where I needed to go and see my GP. I woke up that day with a mild headache knowing it was the beginning of a migraine, I took some Nurofen but still went off to work like normal.

Around lunchtime I had to drive to a store 20-30mins away and on the trip back, I was in so much pain I was battling to drive. It scared me and as soon as I got back, I booked a Dr appointment for that afternoon.

Sitting in the waiting room was torture, I was in so much pain. I'd not seen this Dr before and was praying she would be understanding and not brush me off. By this point I was starting to think these were migraines, and when I got into her room the Dr agreed.

She told me that she also suffered from them herself which was a relief to hear as she would be able to help me. She gave me a script for some stronger pain killers called Maxalt Wafers, and a script for a preventative medication to try to stop them from happening altogether. I was to go back and see her again in 2 weeks, and if it didn’t work, there were other options we could try.

I just couldn't believe it!!!! Why hadn’t I gone there sooner? I had no idea there were all of these pain medications and preventatives. I could have started this ages ago! I went straight to the chemist, got my scripts filled and went to my car and cried.

I had so much hope that afternoon that this was going to solve all my problems... little did I know that this was only the beginning of a very long health journey...

Before I started my car I took one of the wafers, went and picked the kids up and headed home. The wafer worked, it took all the pain away and I was pumped over the next few weeks that I was getting somewhere.

Then the next migraine arrived. It was clear that the preventative medication did not work.

So back to the Dr's I went. She gave me a script for another preventative to try that didn’t end up working either.

MY FIRST VISIT TO THE NEUROLOGIST

Off I went back to the GP again and this time she decided to send me to a Neurologist as well as get a brain MRI done to rule out anything nasty. Normal protocol and that I shouldn't worry (easier said than done!)

It was pretty daunting going into the MRI and waiting for the results. It was a few days after the MRI that I was at work when my phone rang, it was the Dr's clinic number. My heart sank. The receptionist said that the Dr wanted me to come in to discuss my results but it wasn't anything serious definitely not urgent. Phew!!! A bit of relief but she couldn't get me in for a couple of days. It was the worst wait ever.

The appointment day finally arrived and my Dr explained that the MRI showed a mild sinus swelling at the base of my skull which could possibly be something called Chiari 1 Malformation. She said it was very minor and might not be anything at all, but the Neurologist would be able to look into it further.

The Neurologist appointment finally arrived and I took the 2-hour drive to Melbourne. In the waiting room I was pretty anxious thinking about all the things I needed to fill him in on and hoping I wouldn’t miss anything.

I was so glad when I got into his room that he was very friendly and easy to talk to. I explained my story and he explained to me that the swelling that showed up on the MRI was so small that it was not Chiari, and it also wasn't what was causing my migraines.

He then explained that there was another preventative medication that I hadn’t tried yet, and if that didn't end up working, we should consider Botox injections.

He explained that there was a lot of success in migraine patients using Botox and I was pumped that surely one of these options was going to work!!

THE DARK SIDE OF THE MEDICATION

My neurologist gave me a script for Topamax and warned me that in some people this medication can cause depressive, even suicidal side effects. That if I started feeling like I'm going downhill, I should stop taking it immediately. A little bit worrying but I was keen to give it a shot!!

I think I had only been on this medication a couple of days before I ended up with another migraine attack. I wasn't really concerned that it wasn't working as I hadn’t been taking it long enough.

Now normally when I would have a migraine attack, I felt well enough in the early stages I would still do a little bit of work or housework while I could... but this particular day, I settled in for a day on the couch & Netflix - I had season 2 of Ozark ahead of me!!!

I was a few hours in when I started to feel something wasn't right. I felt this horrible sinking feeling inside me and it wasn’t long before I was in tears. I didn't even know why. I just felt like my entire life was falling apart. Like my marriage was falling apart. It was bloody scary.

And then it registered, it was the medication. Thankfully, I got through the rest of the day and I never took that medication again. I will never forget how dark that felt though.

LIFESTYLE CHANGES

As time went on I went from enjoying a few drinks on a Friday, Saturday or Sunday afternoon, to only drinking on special occasions.

I became more and more mindful of what I was eating and I began exercising more.

All with no change in the frequency or intensity of the attacks.

COULD IT BE THE IMPLANON?

I kept thinking back to when the migraines attacks had started. One of the changes that had happened at that time was that I’d had an Implanon inserted (Implanon is a type of hormone birth control, inserted under the skin on your upper arm).

Maybe it was the synthetic hormones from the Implanon that was causing the migraines?

So my next plan of attack was to have it removed. I made the decision that after having it removed. I would not go on the contraceptive pill afterwards, I’d just wait and see what happens.

The migraines only got worse. In the following month after the Implanon removal, I had 5 migraines in one month. That's a migraine every 6 days and they lasted between 3-5 days each.

That was in October, and in November I went on the birth control pill which helped only a little.

THE MENTAL HEALTH TOLL

Up until this point in my migraine journey, I had always remained very positive and optimistic... I have always been this way.

I was never one to get down about anything, and I would rarely ever be in an off mood.

I think because I’d always had so many hobbies and interests, always something that I was dying to get back to doing as soon as I felt well enough again, was what kept me going.

But now my mental health was really starting to suffer. I became frustrated that I was in this continuous cycle of days on the couch - feeling like death, then days having to try and fight my way back to the living, to find the energy to catch up on housework & life, only to get knocked straight back down again.

I was only getting a short time in between of feeling normal. I just couldn’t catch a break.

The effect that migraines were having on my body and the amount of painkillers I was taking had reached a stage where I was unable to move much during an attack.

I could not sit up, stand up, walk or even talk on some occasions. I couldn’t look after my kids and I felt so much guilt that my husband had to do everything when he was already working 10-12 hour days.

I would cry some days having to ask the kids to do things for me, to look after me. And it upset me a lot that one day they would look back and only remember me as being sick.

THE PAIN KILLER BATTLE

I went through phases where I really battled taking painkillers… knowing they were going to totally wipe me out.

The times when I’d avoid it and leave it too long would only land me in excruciating pain, planning how I would get myself to emergency, crying in pain in front of the kids, and watching them cry because they couldn’t do anything to help me.

GIVING UP MY FIRST BUSINESS

Towards the end of 2018 I made the very difficult decision to close my little business. My business that I’d worked so much for, but was now too hard to continue with.

As sad as it was to say goodbye though, what I’d learnt from it was far more important. The skills I’d taught myself that I would always have, and how proud I was of myself for giving it a real crack.

I had come to realise that the type of business it was, was never going to fulfil my dream. It required massive amounts of time & effort and that was never going to give me the time & financial freedom I was chasing.

I closed shop to give my body the rest that it needed, but I knew in my mind that I’d come back to my dream one day and build something bigger and better.

BOTOX BEGINS

By the end of the year, my neurologist decided we should give Botox a go.

I had my first round in December and what an experience that was... 30 something injections in my head, forehead, neck & shoulders. It was a little sting but not as bad as I was expecting, and a hilarious event for my husband Jeremy who watched on.

I looked like an alien as the injections left little swellings all over my forehead. Thank god they were gone by the time we got to the car, I wish we could have got a better photo as it happened!!!

I had a little bit of improvement after the first round and I was pretty damn happy that all my forehead lines were gone at the cost of only $38! (Medically subsidised!!!)

TWENTY NINETEEN

ANOTHER DIAGNOSIS - EDS, POTS & RAYNAUDS

In early 2019 after my GP discovered I had a heart rate & blood pressure issue, I landed myself in a Cardiologist office being diagnosed with Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS) & Raynauds Phenomenon. Sounds full on but they are all connected.

Basically, EDS is a connective tissue disorder where there is not enough collagen in the tissue in my joints, muscles and blood vessels (explains why I am so double jointed!). Because it causes my blood vessel walls to be weakened, my body has a hard time pumping blood around leaving my hands & feet to go white and numb, especially in the cold - this is called Raynauds Phenomenon.

At times in my life when my body is under physical stress (like having chronic migraines), my nervous system goes a little crazy and my blood pressure drops, usually when standing up, and this causes my heart rate to increase to try to bring my blood pressure back up again. I end up dizzy and fatigued - this is POTS.

Just imagine all throughout the day your heart rate increasing to the same level as if you were doing a High-Intensity workout, but all you did was hop up to make a coffee. That was me! No wonder I was tired all the time!

Looking back over my life I could remember many times when this was happening but I never knew why.

After this diagnosis, I was starting to wonder if I was going crazy. Seriously? How could I have so many things wrong with me? Was it all in my head? I’d ask myself these questions every now and then but really, I knew that the way I felt… just wasn’t normal, so I began yet another medication to help keep my blood pressure and heart rate stable.

CGRP INJECTIONS

In February 2019 at my 2nd Botox appointment, my neurologist started talking about a new migraine treatment available in the US called CGRP Injections. It looked like they would be available in Australia some time in the coming months.

This was the first preventative treatment designed specifically for Migraines and was pretty successful in the US so far.

Something we could look into if the Botox didn't work and by the time the 3rd round of Botox was due in May, I knew it wasn’t (Insert sad face for my now clear smooth forehead)

The CGRP injections were now available in Australia which was a huge bonus and I was really keen to give it a go.

We filled out the forms and I was so extremely lucky to be the last person to get accepted into a program where I would receive the injections for free for the first 12 months.

Aimovig was the only brand available in Australia at this time and the full cost for just one dose was $1800 (WTF!!!)

The first dose was ordered for me and I was to head back to the neurologist’s office 1 week later to be shown how to inject them. Two injector pens into my tummy every 28 days.

COULD IT BE HORMONES?

Two days before the injection appointment day arrived, I just so happened to be stuck on the couch again with a migraine.

With too much time to think I was back on Dr Google and wondered whether my female hormones were playing a part in all of this? Something I had considered in the past (remember the Implanon) but had not been able to find any pattern or correlation.

This time I had an idea to print out an A4 yearly calendar and mark the different stages of my hormone cycle on it and also mark in my migraine attacks that I’d been keeping a record of.

I pulled myself off the couch and plotted it all out and I could see a bit of a pattern happening each time that I would start to take the sugar birth control pills (pills with no hormones).

Did this mean that the migraines were being triggered by a sudden drop in hormone levels? (I was sure at this point this wasn’t the only cause because my migraine attacks were all over the place but it was something to go on!)

My next plan was when I reached the sugar pills on the packet next, I would skip them altogether and see what happened. By skipping them there should be no fluctuation in hormone levels and hopefully no migraine.

Now this was probably not the greatest time to be trialling this theory when I was about to start the CGRP injections, but I was desperate and thought I'll worry about all that later!

I went to my appointment and did the first lot of injections. It was strange injecting myself in the tummy, but thankfully pretty easy using auto-injector pens.

Over the following 4-6 months there was a significant improvement in my migraines, HOORAY!!! I don't know whether it was the injections or skipping the sugar pills or both. I didn’t really care! It just felt SO nice to get some normality back in my life and I just wanted to enjoy it.

TWENTY TWENTY

ANOTHER PROBLEM RAISES ITS UGLY HEAD

It’s now early 2020 and I'm still feeling good. My migraine attacks are minimal and then... I started experiencing this feeling of dizziness and pressure in my head every day.

Different to how the beginning or a migraine felt.

I was confused. Why was this happening? I was still taking the medication for my blood pressure condition so it can't be that?

It kept getting worse. Each day I would wake up feeling perfectly fine and as the day went on, this pressure would build up in my head until I had to lay down. There were many times I thought I was going to pass out.

I couldn't believe after everything I had been through, things were starting to go downhill again.

At first, I questioned whether it was the fluro lighting at work, or computer screen glare. I ended up seeing an optometrist and had the usual eye tests done and got fitted with some prescription glasses.

They didn’t really help so I started working with the lights turned off which helped a little. Then I started opening the blind behind my computer to give my eyes a break from looking up close at a computer screen and a wall all day. I could now look out into the distance. This helped a little also but the worst of it was when I was driving. I felt like my eyes were struggling with light and movement so I went back to the optometrist who changed my glasses lenses to tinted lenses in an effort to help but that was all he could do. It didn’t really help either.

So 1 week before the first Covid lockdown hit Victoria, I arranged with my boss to work from home because driving to work had become too hard… (Turned out to be good timing as I would spend the next 3 months locked up with my kids as their new school teacher!!!)

AN END TO THE INJECTIONS

As we headed towards the middle of the year my migraine attacks were starting again and slowly getting worse.

By now there were two more CGRP injections available in Australia and as I headed towards the end of the Aimovig program I decided to try one of the others that was only a fifth of the price. I switched to Emgality (at $350 per month) and saw no change.

By now I start questioning whether the injections had been working at all over the last 12 months or whether it was the skipping of the "sugar pills". I stopped using the injections with no change in migraine episodes. And that was the end of them!

As I write this story out now, I look at everything that has happened and it leaves me feeling so confused. Why the things I tried would work one minute and then not work the next. Why couldn’t I work out what was behind it all?

A DIFFERENT HORMONE APPROACH

Now that the injections were a thing of the past, I decided to focus on my hormone theory and made an appointment with Nat Kringoudis who I followed on Insta.

Nat is a Natural Health & Chinese Medicine practitioner and specialises in women’s hormones. After reading some of her stuff it was clear to me that taking the birth control pill was really just a mask covering a bigger problem even if it was helping a little.

I was realising that putting something synthetic in my body for 20 plus years was only going to do damage and I needed to get my body back to operating how it should naturally. I chose right then and there to stop taking the pill and a few weeks later I had my appointment with Nat.

Nat explained to me that although the pill suppresses the body's own hormone production, some people can still produce some of their own hormones at the same time... this was likely why I had started getting migraines again.

Even though I was still taking the "hormone tablets" continuously, my body was producing it’s own hormones causing fluctuations and triggering migraines.

We chatted all things health and she started me on some probiotics, magnesium and liver supplements to support my body and hormones functioning the way they should.

TWENTY TWENTY ONE

THE YEAR OF LOCKDOWNS AND MELTDOWNS

Throughout 2021 I continued to try lots of little things without any change.

  • I stopped drinking alcohol in March (not that I was drinking all that much anyway!)

  • I stopped drinking coffee in May

  • I continued taking supplements and seeing Nat throughout the year

  • I worked with a mindset coach from June to November

  • I cut out dairy, gluten and sugar for 6 weeks in August & September, and then reintroduced it in limited amounts

  • In August I began drinking celery juice in the mornings to support my liver function and still do to this day In September I did hypnotherapy to stop my stress habit of biting the inside of my mouth and clenching my jaw

  • In October & November I worked with a physio to build up muscle strength & posture, and also did some dry needling in my shoulders

  • I even had saw a psychic who told me that in September 2022 I would see a Professor who have all the answers and my health would then start to improve.

By the end of November, after everything I had tried, I was feeling worse than I had in a long time and I hit rock bottom.

There was more going on than just the migraines and it seemed as though my vision was playing up again.

I got so angry that after all of these years I was going backwards again and I broke down to my husband.

We decided at that moment I was going to go hard at finding some answers one more time - I would re-visit the GP for blood tests, re-visit the optometrist about my vision, go to the dentist and get some dental problems fixed, book in with Nat again about my hormones… and if after all of that I still didn’t have anything to go on, then we would need to consider some big changes.

Like giving up work for a bit, and possibly moving back into town. Two things that had entered my mind previously and was in total denial about until now.

Now I was beginning to wonder why I was spending so much time and energy trying to fix my neck, shoulder, back & vision problems that were clearly caused by sitting in front of a computer & phone all day and driving long distances into town multiple times a day when maybe I needed to just stop doing that?

THEN THINGS ALL OF A SUDDEN START LOOKING UP

I had my first appointment with Nat, she felt that my hormone levels were too low and asked me to start including flaxseed & pumpkin seed into my diet (I ended up adding Chia seeds and Sesame seeds as well after learning about seed cycling). This would help boost estrogen and progesterone.

I went for a dental check-up next. It turned out that one of my teeth was infected and it needed a root canal. I went on antibiotics for the infection and I couldn't believe how much better I felt. The jaw aching that I had put down to clenching actually turned out to be from the infection. With the infection gone I was feeling 100 times better.

Next was a visit to a new optometrist. I explained what had been happening with driving and working. She did the usual tests and found that I had an issue with how long it was taking for my eyes to adjust and focus. She said there wasn't really anything she could do to help other than for me to continue wearing my reading glasses. I really wasn’t satisfied with that so I went straight online to see if there was a more specialised service available and discovered a place in Melbourne that jumped out at me. I’m not sure why it did but I trusted my gut and made an appointment for the first weekend in December.

I continued to feel great in the weeks after my tooth infection settled and had the first part of my root canal done on the 30th of November. I then had the specialist optometrist appointment on the 4th of December.

It was at this appointment that I realised how much trouble my eyes were having processing what comes in and how yuk it made me feel when the optometrist did some tests. It was a whole different approach to what most optometrists take, looking at how the vision affects the entire body. He made me aware that when certain things happen with my vision, I often brace myself and hold my breath without even realising I’m doing it. Which itself sets off a whole chain of events throughout my body including the dizziness, possibly the heart rate & blood pressure issues I’m having. It puts my nervous system into a state of chaos!!

WHERE I'M AT NOW...

So here I am now arranging for a new set of glasses to wear to see if that helps, I’ll add more to this story as it continues...

It's been a very lonely place having this invisible illness. I’ve found that if I talk about it too much, people get sick of hearing about it, if I talk about it too little, no one understands why I say no to doing the things they ask me to do. I feel like I’ve been living two lives for a long time... Constantly stuck in this cycle of the ‘normal’ me who is happy and fun and does normal things… and the ‘other’ me, who gets sucked into a dark place of frustration and ‘why me?’, numbing myself to pass time, and fights like crazy to find the energy & willpower to get myself back to the normal.

WHAT I'VE LEARNT FROM MY HEALTH JOURNEY
  • Just how strong I really am, I mean I’ve always been very persistent but there have been times where I nearly gave up and I look back and I wonder how I didn’t... but I just keep on going. I keep picking myself up no matter what. And I think my business is the reason for this. I’ve always been so determined to make it a success, to have the time & financial freedom to build a lifestyle of our design, and to have the time and resources to take care of my health. It is ultimately what pulls me through every migraine attack and every challenge I’ve had.

  • I’m proud that I’ve never given up on finding answers. I've never accepted that this is just the way it is, no matter how hard it’s been to keep going. I’ve not listened to professionals who tried to tell me it’s just the way I am - I just knew there had to be a reason and if they couldn't tell me what that was I would keep on searching.

  • I’ve learnt to become extremely aware of what I feel in my body and mind, and know when I need to slow down, stop or change course

  • Learning to follow my intuition. It has always led me to the right places and people at the right time… even if it has felt like a slow path getting there.

  • How much I value time. I’ve spent so much of it unable to do the things I want, that I don’t want to waste a single second of time feeling good doing things I don’t want to be doing.

  • How determined I am to create my business & life MY WAY. That works for my health, my time, my family. And I'm determined to help other people who are feeling stuck or held back by something do the same.

WHY HAVE I SHARED MY STORY?

I wrote it for anyone who might be battling through a health journey of their own.

I can remember back in the early days of my journey when I was finding it really hard, I stumbled across a story written by a girl my age who suffered from migraines as well. It made me feel so much less alone.

It gave me ideas of some more things I could try, and was just nice to have someone to relate to.

At the time there wasn’t much to share about my own journey but I always kept it in the back of my mind that one day if I had something to share, I would do the same and hopefully help another person who needs it.

If you’ve made it this far, thank you SO MUCH for reading… you deserve a prize!!!!

Kate x

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