So headaches can be serious as well and shouldn’t be ignored if they persist or are severe.
Then what is the difference between a headache and Migraine?
The main difference is the Migraine disorder is accompanied by other symptoms that is not associated with headaches.
Migraine disorder is characterized by episodic attacks of head pain and associated symptoms such as nausea, sensitivity to light, sound, or head movement. However some people who have Migraine Disorder do not have severe headaches as a dominant symptom. Their primary complaint may be of dizziness, of ear pain, of ear or head fullness, “sinus” pressure, and even fluctuating hearing loss.
As a neurological disorder Migraine covers a spectrum of different variations such as
Migraine without Aura
Migraine with Aura
Migraine with Brainstem Aura
and Chronic Migraine
This is just naming a few of the main presentations
Within these categories peoples lived experience of symptoms and how disabling the disorder varies largely.
No one person with Migraine Disorder experiences the same thing
This is a picture expressing the symptoms I experience during an acute Migraine attack.
My diagnosis is Chronic Migraine with Aura
This picture would not be the same for everyone with the same diagnosis but as you can see from the symptoms listed I am affected by more than a headache.
So thank you so much for taking the time to read this post and help me educate and raise awareness around Migraine Disorder.
Love Monica x
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Shankin CJ, Gall C, Straube A. Headache syndromes after acoustic neuroma surgery and their implications for quality of life. Cephalgia. 2009; 29: 760-71. Full Text
International Headache Society, The International Classification of Headache Disorders. 2nd Edition, 1st revision. 2005. [cited 8 November 2011]. Available from: URL Link
Olesen J, Bousser MG, Diener HC, et al. New appendix criteria open for a broader concept of chronic migraine. Cephalgia. 2006; 26: 742-46. Full Text
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It feels like I am about to write The Neverending story minus the magic dragons and I don’t have as cool a name as Bastian Balthazar Bux
So my story with Migraine begins in 1998 as a 6 year old living in a remote and rural town experience a 6 week long persistent headache that no one knew what it was. As there was no capability of providing diagnostic testing in the town I lived in my family traveled 9 hours to take me to a hospital where I had a lumbar puncture performed.
I was discharged the same day that I had the lumbar puncture. My parents were told I had slightly raised CSF pressure and I was given a dose of steroids to take for this. I don’t remember anything about the procedure but what I do remember is leaving the hospital and then sitting in my car seat for hours in pain as we started driving home. It is crazy to me now that the hospital discharged me and didn’t specify to my parents that I should lay flat for the next couple of hours or so on but it happened. We only got four hours in to the journey home before the pain got so bad that we stopped and sought medical attention. By the time I saw the doctor at the local hospital we stopped at the pain had eased and I could bend over again so nothing needed to be done. We stayed the night in a motel and the continued the long journey home.
Apparently I initially had a good response to the steroid course for a week but the headaches returned and I was having diplopia. So two weeks later after my lumbar puncture I had a 12 hour journey to see a paediatric neurologist who admitted me for investigation. Here I was diagnosed with common migraine based on my test results and symptomology. My headaches were usually frontal and the more severe episodes were associated with nausea and photophobia. I was started on a small dose of Sandomigran for three months to see if there could be an improvement.
I remember my mum gave me a calendar and I marked every headache free day with a cross and after 30 free headache days we had a party. My mum called it Monica’s no more headaches party and invited school friends and neighbours. It was really sweet at the time and I didn’t know that this would be a chronic condition I battled with for the rest of my life.
So up until the last two years of highschool I would have a migraine attack out of the blue over the years but it was not chronic or constant and I didn’t really think about it as it didn’t impact my life at the time.
In grade Ten I switched high schools as I had previously been bullied at my old school. This was a major stressor in my life as I had difficulty trusting people again and making friends. During this year I started experiencing more migraine attacks. I was having to have a couple of days of school a month for migraine attacks. This continued through out grade 11 and 12 as the stress of high school ramped up.
I was not on any preventive medication at this point and only took paracetamol and nurofen for my Migraine attacks. I had not seen a neurologist since 1998. I remember going to my General Practioner in 2008 crying as I was in so much pain and just didn’t know what to do. They gave me IM shot of maxalon and tramadol and sent me home with panadeine forte and maxalon to rest.
It wasn’t until 2010 when I was a 2nd year nursing student that I first was prescribed a triptan to see if it would help with acute attacks. I was also using panadeine forte or capadex to help with the pain at the time.
So in hindsight this was an exact recipe for medication overuse headaches but I had no idea. I also was not told the maximum amount of times for triptan use.
In 2012 I commenced my graduate nursing position at a large tertiary hospital. My family and I also moved from the northside or our city to the southside. I found a new GP and talked to him about my migraine attacks. He started me on my first preventive medication since I was 6. I started amitriptyline which I started at 10mg and was titrated up to 25mg. However, I was not able tolerate it as I was like a zombie due to being dizzy and drowsy as the time. I had difficulty with when to take the tablet as it makes you immediately feel tired. As a new graduate I needed to work a rotating roster including night duties and often got long runs of 10 shifts in a row as a newbie.
So I weaned off amitriptyline and was just taking panadiene forte and maxalon for my acute migraine attacks.
This all seemed to be going okay until January 2016 where I ended up in and emergency department with a 3 day long migraine that would not budge and severe photophobia. I was eventually given a largactil infusion and then discharged home. For the next 4 days my migraine attack continued and I ended up presenting to a different emergency department on day 7 of the attack with 8/10 pain. I was admitted under neurology given my persistent headache and diplopia and was given another largactil infusion and commenced on TDS indomethacin. I was given 2 bags of largactil and some intravenous fluids and anti-emetics as I was vomiting.
I was admitted under a neurologist and saw him daily. This was the first neurologist I had seen since being 6. I had an MRI brain plus MRA head and neck to rule out a dissection or stroke. I had to wait two days for the scan and those days were such a long wait of sitting in a hospital bed thinking. I was told on this presentation that I was at an increased risk of having a stroke due to having migraine disorder and being on the oral contraceptive pill. I had been on this combination pill for 7 years and not one of the general practitioners I saw during that time mentioned the increase risk of stroke and that I should not be taking this particular type of birth control.
I was discharge four days later with a clear MRI and being put back on Endep (amitriptyline) and continuing indomethacin. I was told no follow up was needed.
A month later I found myself back in the same emergency department with another severe migraine attack. I had only been pain free for a week since I was discharged from hospital in January. I was having to call sick into work for 50% of my shifts. The medical registrar called the neurologist consultant on call and uptitrated my Amitriptyline and I was to start topiramate in a week if that did not help. The doctor wrote a letter to my GP. My GP organised for me to see the neurologist which I had been admitted under in his private clinic.
Another month went by until I saw the neurologist in his private rooms. He was apologetic that I was not followed up and had to seek my own referral out. He advised me that he believed my migraines had now become chronic. He arranged an admission to a private hospital for a dexmethasone infusion and further largactil if needed. He also changed my preventative medication from amitriptyline to propanolol. I was given an acute plan to take maxalt or 900mg aspirin at first sign of an attack.
I spent two days in private hospital recieving IV dexmethasone and largactil and on discharge my pain had decreased from 8/10 to 3/10 so this was considered a success.
In April 2016 I was still having a daily headache since my first original attack in January and was still having frequent migraine attacks. The propanolol decreased the severity of the attacks a bit, but I was waking up every morning with a headache that was worse in the morning. Because of this my neurologist wanted to rule out raised intracranial pressure, so I had the joy of another lumbar puncture. I was also been prescribed topiramate.
During this time I came under review at work for my excessive amount of sick leave. When I requested to my manager at the time could I please drop my hours down to concentrate on my health I received the response of “you are so young what could be wrong with you”. This was not the first time nor would it be the last time that I felt the sting of the stigma of having an invisible illness.
Fast forward to May 2016 and I am on a 80mg dose of propanolol twice a day. I found myself one night feeling light-headed and having chest pain. My pulse rate was 40bpm. So back to emergency room I went, where they did some tests, monitored me for a couple hours and then just sent me home and told me to decrease my dose to 60mg twice a day.
My next follow up with my neurologist in June 2016 saw effexor 37.5mg added to my cocktail of preventors as he believed it may help due to stress being a factor. I hadn’t yet started topiramate due to the issues I was having with the propanolol and the fact that I didn’t really want to so he said hold off for now. I also received my lumbar puncture results, which were normal.
The effexor helped break the cycle and I was having more migraine free days than not. However, being on a beta blocker was making me really run down and tired. So in February 2017 I started weaning on the propranolol over the next 3 months.
All was going okay in the world of Monica’s head. I was down to one attack a month, but then in May I had 4 attacks and the headache became chronic and daily again. Not this again. I emailed my neurologist for advice and he scheduled me a sooner appointment. I was started on topiramate (and told not so subtly to actually fill the script and take it this time) and scheduled in for botox treatment in the future.
Things intially improved on topiramate and it was decided to postpone my botox treatment for a couple of months.
By the time I had my first botox in September 2017 I had just gotten back from Kenya where I had broken my leg and went back home to Melbourne for surgery. I didn’t have a neurologist in Melbourne at the time so I flew back to Brisbane on crutches to see my neurologist for botox. I looked like a right mess and my neurologist was mildly amused.
Late in 2017 I was having pins and needles in my hands and toes and started having difficulty with word finding. I would be mid-conversation and just forget words or see a word on paper and forget how to pronounce. These were all common side effects of topiramate. So when I next saw my neurologist for botox my topiramate was decreased from 50mg twice a day to just 50mg at night.
I then moved cities again in January 2018 and this time it was a more permanent move so I needed to find a new neurologist.
I found one and continued on my current regime in 2018 of botox, topiramate and effexor. I was still having days of work for migraine attacks but it was only a couple of attacks a month.
And then last year happened. Boy did everything go down hill. In February 2019 I had a 14 day long migraine attack which had not broken despite acute treatments I had taken. I called my neurologist and he arranged for me to admitted straight away to private hospital for a lignocaine infusion. I spent two days in a high dependency unit hooked up to monitors while I received this infusion and then another day on the ward. My pain decreased to 4/10 and I was discharged home feeling very woozy and awful.
Because I was classified as having chronic migraine and having tried at least three other preventative options I became eligible for a new medication trial in March 2019. This medication was called Aimovig. I really knew nothing about it at the time except that it was an injection that I would take once a month and was something called a CGRP inhibitor.
So I started on my Aimovig trial in March 2019 with low expectations but was rather surprised. It did help. It didn’t stop all my attacks but helps with intensity of them and my chronic daily headache. I was having fewer sick days from work and started being able to do a bit more.
However, my story with Aimovig was sadly short lived. I was only on a three month trial of the drug which finished the end of May. To continue with the this medication it would have been $895 per month, which was a cost I could not afford. So I had to stop and just continued on with oral medications, which I was still taking.
So along came June and I went into what I would later learn is called status migraine. After 16 days of a continuous migraine attack my neurologist admitted me for a ketamine infusion. During this admission I also received bilateral occipital nerve blocks from a pain specialist to see if that could help.
Those 5 days in hospital were some of my lowest. The day before I was admitted I called my manager to tell them the plan and that I would need to be off for a week. I had already used up all my sick leave so it was all to be leave without pay. After me telling them that I needed to be admitted to hospital for treatment they told me that we would need to have a meeting about my excessive sick leave and a review to see if I was fit to continue working in the area I was. I just broke down. I felt defeated. I then went to hospital and went through a ketamine infusion and all the awful side effects of it just to have it not help at all. My neurologist told me during this admission that he didn’t know what to do next. At that time hearing that I lost all hope and did not know how I would go on. I wouldn’t be able to work and would be confined to bed.
In hindsight, I do appreciate him being honest with me as opened the conversation for us both to explore different options but at the time I felt defeated.
That migraine attack lasted 31 days and I was given a new label: refractory chronic migraine. Which basically means it is hard to treat. My topiramate was increased back up to 50mg twice a day despite previous side effects. And I was slowly weaned of effexor and swapped to duloxetine. This was to help with pain and my low mood due to the fact at the time I had a very poor quality of life.
In July I ended back in the emergency department with a migraine attack that would not stop after 3 days of acute treatment.
At this point my general practitioner wrote a medical certificate and letter to my workplace asking for at least two months off to see if things could settle. The stress of having to decide whether to call in sick or not and then the consequences of calling in sick so much were acutely weighing on me. So my treating team decided I needed time off work altogether to take a break and reassess what I am up to doing in the long run.
I was spending the majority of my time in bed with all the window blinds down. A good day was when I was able to take the dog for short walk otherwise he just waited until my husband got home. I didn’t eat regularly, I wasn’t able to do any house chores and it was an effort to shower myself. I felt like a burden and so guilty. My husband had not signed on to be carer and that is what he became during this time.
I was referred to the chronic pain clinic at my local hospital, which to this day I still have not received an appointment for.
With help of a union representative I was able to negotiate getting paid my annual leave at half pay for the time I was taking off as medical leave.
In August, I traveled to Sydney to see a specific headache specialist for a second opinion. While he had the bedside manner of a dead fish he did give me suggestions for new treatment options including trialing a different CGRP inhibitor.
Come October and it was time for me to go back to work. My GP extended my medical certificate for me and wrote me a Centrelink certificate as I had run out of any type of leave. I met with one of directors for the unit I worked in and presented a letter from my neurologist outlining my condition and several accommodations that he recommended to be made. I was told these accommodations would not be able to be made and they would not help me transfer to another unit within the hospital. If I wanted to do that I would need to apply externally. The director did say though that they were happy to read my resume for me and that they were glad I was looking so much better. My biggest regret is not bringing a union representative to this meeting as I was entitled to reasonable accommodations under the law but had been point blank refused. I called the union afterwards and they said we can fight for you but it will probably be a long drawn out fight with no guaranteed outcome.
So I decided to walk away. I sent my resignation letter and my job ended in November. I never even got a reply or acknowledgement of my resignation from the director I met with that day. That was when I knew I had done the right thing for me.
I then had the battle of hours of paperwork and multiple specialist appointments trying to receive access to my superannuation on medical grounds, which after months I was denied on the grounds of not being disabled enough.
I also was denied access to any Centrelink support despite having a medical certificate from my doctors due to the fact that my spouse was earning money.
I was feeling awful and had no idea what to do. I thought I would never be able to nurse again as I couldn’t get out of bed most days. I started doubting myself during this time as I had received negative comments from people and thought is it all in my head? Am I just attention seeking? I connected with an excellent therapist who specialized in treating people with chronic pain who helped me see that I was unwell and those that cared about me knew and acknowledged that.
During this Period of time there was also multiple Emergency Room visits when an Acute attack could not be controlled which were far too frequent for my liking.
My next neurology appointment in November I was signed up for a new CGRP inhibitor the Ajovy PFP trial and we talked about how if after a couple of months it was going well I could start weaning down on the topiramate. Ajovy is also a monthly injection. I was happy to finally have a plan to get this nuisance of a drug out of my life.
Later that evening after my appointment when I was trying to go to bed I suddenly a experienced sharp and extremely painful sensation in my back and groin. I could not get comfortable. I was rolling around in pain and crying. I called Healthline and spoke with a doctor. They thought it was probably muscle pain but if it is still severe to get checked by GP tomorrow to rule out kidney stones. (For the whole story check out this blog post)
Now I had previously been told topiramate could cause kidney stones but surely I couldn’t be that unlucky to get almost all the side effects.
I was able to sleep for a few hours after dosing myself up with some pain killers and convinced myself that it must be muscular and I reassured my husband he should still leave for his out of state conference early tomorrow and that I likely just pulled a muscle.
The next day the pain became unbearable, and I ended up in the emergency department where I was diagnosed with kidney stones and sent home with some pain relief and antibiotics and told to try and pass the stones and keep up my fluids.
The next day I pretty much spent it on the couch. I had no appetite and by the evening I was vomiting up whatever I took in.
So back to hospital I went and this time I had an ultrasound, which showed that the kidney stone was obstructing. Then all of sudden surgery was being thrown around. I was admitted and had a urology consult.
The call to my husband that night to update him was so hard as I felt so guilty. I had already deprived him of so many opportunities due to my chronic migraine or interrupted his plans and to do it again because of a side effect of a medication for my migraine disorder was heart breaking.
He left his conference and flew back on the next available flight and arrived in the evening of the day I had surgery. I had the operation to put in a stent to allow pressure to be relieved around the obstruction. I found out this was only one of two operations I would need.
What followed this operation was two weeks of pain and discomfort as well as rebound migraine attacks being triggered by the amount of pain killers I was taking for my renal pain.
So two weeks later I had my second surgery. Thankfully they were able to successfully blast the stone and retrieve it and I was able to have the stent removed.
I just immediately felt so much better the pain and discomfort was almost gone. With feeling so much better I didn’t need to take strong pain killers but unfortunately the migraine attacks still continued from using all the pain medication.
I emailed my neurologist as soon as I got out of hospital asking for a plan to wean off topirmate as I had had enough. A couple of days later he called and I commenced the plan.
I took my first dose of Ajovy days after getting out of hospital and started slowly decreasing the topiramate until I was finally free of the drug being in my system.
This was the worst 6 months I had experienced which resulted in multiple emergency department visits and hospitalisations. Out of 183 days prior to starting Ajovy, I had a severe attack on 126 of them. My quality of life was poor at best. I felt bed bound and when I did try and go out I often struggled and felt worse afterwards.
Since starting Ajovy in December 2019 I have only been to hospital once in February 2020 for an acute attack. Comparatively for the 6 months I have been on Ajovy I have only had 40 acute attack days out of 180 days. More importantly than that, I feel like I have a life again. I don’t have a chronic daily headache everyday anymore. The severity and length of my acute attacks has decreased. I have energy and am able to get up out of bed and do things. I even got a casual job and started working again in February.
Ajovy has been recommended to be put on the PBS but under the same cap as botox. While this is great news that it was approved it is not likely to be put on the PBS until the cap is raised as this class of drugs is expensive to manufacture. So I remain unsure how long I will have access to this life-changing drug on the trial and what the cost will be once it concludes.
So this is where I am at the moment. I have finally found a successful treatment but am not sure for how long I will be able to use it for.
What I have taken away from reflecting and writing down my whole story is the importance of advocating for yourself and find a good general practitioner you can trust. It is so important to have a migraine action plan created for you early on rather than relying on opioids. It is also important to do your own research as well, so that you can be an informed participant in your health care decisions. But most of all don’t let people make you feel like you aren’t allowed to be unwell or as sick as your are. Migraine is a neurological disease and should be treated accordingly with respect and empathy.
Thank you for reading my story and I would love for you to share yours with me sometime.
This blog post has taken me a little while to write and reflect on the crazy events of late November and December.
I have been on Topiramate as a preventative since 2016. I have had all the classic side effects tingling hands and toes. As well as word finding difficulty and memory loss. Due to these side effects my dose has been up and down titrated for years to manage the side effects versus the beneficial preventative effect I was getting at some stages.
I listened to the migraine world summit last year and found out that in the UK they had changed the guidelines to stop giving anyone of childbearing age topiramate due to the significant risk of birth defects. I always knew that topiramate caused birth defects but from this point on I felt that this drug just wasn’t right for me.
I discussed it with my neurologist but unfortunately as I couldn’t afford to go on Aimovig privately and the CGRP inhibitor drugs were not available on trials yet I didn’t have a viable option to switch off it too. I had also just changed my venlafexine to duloxetine to see if that would manage the pain better. I couldn’t help though having this nagging feeling that I wasn’t happy being on the topirmate still.
My next neurology appointment I was signed up for the Ajovy PFP trial and we talked about how if after a couple a months it was going well I could start weaning down on the topamax. I was happy to finally have a plan to get this nuisance of a drug out of my life.
Later that evening when trying to go to bed I suddenly a experienced sharp and extremely painful sensation in my back and groin. I could not get comfortable. I was rolling around in pain and crying. The home gp was all booked out so we called the healthline and talked a nurse and a doctor called back. They thought it was probably muscle pain but if it is still severe to get checked by gp tomorrow to rule out kidney stones.
Now I knew Topiramate could cause kidney stones but surely I couldn’t be that unlucky to get almost all the side effects.
I was able to sleep for a few hours after dosing myself up with some pain killers and convinced myself it was muscular. I reassured my husband he should still leave for his out of state conference and that I likely just pulled something.
A couple of hours later that pain became unbearable, my normal GP was closed so I got an uber to a walk in clinic. I sat there waiting in pain and when they saw me they took down my history and then wrote a referral letter to the nearest hospital and said you need to go to the Emergency department.
So after hours in the emergency department I was diagnosed with kidney stones and sent home with some pain relief and antibiotics and told to try and pass the stones and keep up my fluids.
The next day I pretty much spent it on the couch and watched harry potter movies. I had no appetite and by the evening I was vomitting up whatever I took in even fluids.
I called the health advice line the next morning and the told me I needed to present back to hospital as soon as possible. I was so stressed as my husband was still away and I was worried about our dog bob. Luckily we have wonderful neighbours who happily fed and looked after him for me.
So back to hospital I went and this time I got an Ultrasound which showed that the kidney stone was obstructing. Then all of sudden surgery was being thrown around. I was admitted and had a urology consult.
The call to my husband that night to update him was so hard as I felt so guilty. I had already deprived him of so many opportunities due to my chronic migraines or interrupted his plans and to do it again because of a side effect of a medication for my migraines which I no longer wanted to be on was heart breaking.
So he was going to try and get whatever flight out he could the next day as I didn’t have a time for my surgery. In the end I was able to call him just before I left for theatre and he hopped on his plane so that is probably the best it could have been.
So I had my operation which I found out would be one of two to put in a stent to allow relieve the obstruction.
What followed this operation was two weeks of pain and discomfort as well as rebound Migraine attacks being triggered by the amount of pain killers I was taking for my renal pain.
So two weeks later I had my second surgery and I went to sleep not knowing if they would be able to remove the stent or have to put another one in. Thankfully they were able to successfuly blast the stone and retrieve it and I was able to have the stent removed.
I just immediately felt so much better the pain and discomfort was almost gone. So much so that the day after I was discharged from the hospital I went shopping and out about doing lots of things only to feel awful the next day. I had forgotten that I just had surgery as I was finally feeling so much better. With feeling so much better I didn’t need to take strong pain killers but unfortunately the migraine attacks still continued from using all the pain medication.
I emailed my neurologist as soon as I got out of hospital asking for a plan to wean off topirmate as I had had enough. A couple of days later he called and I commenced the plan.
I took my first dose of Ajovy and started slowly decreasing the topirmate until I was finally free of the drug being in my system.
What I have learnt from the very difficult situation is the importance of Migraine disorder specific medications that have been designed for the that purpose. While all medications have side effects the more tailored treatments we are able to achieve the better the outcome and hopefully less serious side effects. This is why I shall keep advocating for medication like Ajovy and Aimovig and all the new CGRP class to become affordable and available to all who require it. Safe healthcare is a right not a privilege for those that can afford.
So often when you tell people that you have migraine disorder the first thing they ask is what are your triggers?
I often just shrug my shoulders and list a couple of things that are definite triggers and say it is variable. Last year I stopped tracking my migraine triggers for awhile as the pressure of trying to pin it down to something all seemed to much and unachievable at times.
So then at times when I been asked this question it has felt really intrusive and accusatory. Like do you know your triggers and if so why aren’t you dealing with them? No one asks straight away when someone is diagnosed with heart disease what are your risk factors. So I struggled with the concept of people wanting to know more versus the negative undertone of the question.
As someone that has had migraine attacks since the age of 6 I can list definite triggers out for you but I can also tell you I have tried chasing triggers for many adult years trying to get the perfect balance point so I am “responsibly taking care of myself” only to be left confused and in pain.
It wasn’t until I saw a post awhile ago by movement with migraine on instagram that I heard about the bucket theory and suddenly everything seemed a bit clearer. It also seemed like it would help explain migraine attack triggers to those that ask you about.
So the bucket theory as I understand goes something like this as explained by Migraine strong
The Bucket Theory was composed to explain how complicated migraine triggers could be and why something feels like a trigger one week and not the next.
The theory states that each day we start out with a bucket that isn’t empty but contains things that we can’t avoid in our daily lives (ie. hormones, stress and weather). These things fill 1/3 or maybe even 2/3 of the bucket depending on how stressed, hormonal or triggered by weather you are. Then on top of this baseline other triggers like allergies, smells, foods and drinks are added into the bucket. Each thing added takes up space or volume in the bucket. Every one of those things has a different volume attached to it. For example, raw onions may have the volume of a softball, whereas a bit of lime juice may have the volume of a pebble. The amount of water it displaces from the bucket is how it will affect your head and the overall load it has on tripping the migraine trigger mechanism for the day. If we eat or encounter too many large triggers in any given day, the bucket overflows and an attack will ensue.
However, the next week when the weather is fine and our stress level is low, the raw onion that triggered us the week before could be reduced to the volume of a marble instead of a softball.
So in my bucket I might think the trigger is the poor choice in food I ate last night where in reality it is just the last thing that overflowed my bucket bringing on a migraine attack.
This theory really helped me visualise why it is such a struggle sometimes to narrow down what set off the particular attack and also how to better verbalise that struggle to people in a insightful and educational way.
I hope this theory might help you
Let me know your thoughts about triggers and the bucket theory
So after a recent set of discussions on the Migraine Australia chat facebook group and my Neurology appointment today I couldn’t shake the feeling of how strongly a lot of my experiences have been geared to uneven power divide between the medical profession and the patient.
For example I had super forms I needed my neurologist to sign which had had been sitting in his to do box since August. Between August and today I sent emails and called trying to prompt to get the the form filled in to no avail. So today I asked the receptionist for these forms so I could take them into the appointment and I would have him do them in person. When he saw them he immediately let out an exasperated “more paperwork, I am drowning in paperwork right now I really don’t have time”. But it took him a minute to write a summary of my condition and sign the form. So why should I feel like a burden or I asking for to much when I need this and have been requesting it for months?
Then the other point was raised about migraine diaries and how my specialist requested me to use one particular type because that is the type he requires his patients to use so he can read their diaries easily in his mind.
So why is it that asking for things in an appointment that we have waited months for is an inconvenience? Or because we decide to record things differently to your set diary doesn’t mean my pain is any less than what I say it is.
I remember really bad times where I have have waited months in pain, counting down the days for a 15 min appointment for a glimmer hope that my life would get better.
So what is the answer? I think it comes down to the fact that at least for migraine disorder it is not just a neurological disorder and to treat it as such is ignorant. It has vast social, psychological and co-morbid effects on peoples lives.
Neurologists need to injunction with their standard practice embrace that the disease is a holistic process that effects every part of a person’s life.
A way to transition to delivering better continuity of care would be to have neurology Nurse Practitioners at neurology outpatients. Patients could see the Nurse Practitioners to assist with disability support pension applications, super forms, centrelink forms etc. They could also run some medication titration clinics as well as pre neurologist check-in to see how everything is going and if there are any queries.
This would would help but I think fundamentally it comes down to re-building the doctor-patient relationship and that being one of a therapeutic alliance rather than continuing on old biomedical model of worship doctor.
So next time you are asking a question in your appointment or asking for a form to be signed and you get attitude politely remind your doctor that this your appointment (your time you have waited for) and you are meant to be working together on a plan.
The last couple of months I have been plagued with all over body aches and pains as well as some other symptoms which have been puzzling me. I took me own advice went to the doctor and got a set of baseline bloods done as just a starting point to investigate from.
I also created a symptom Map and posted it on my instagram story more as me finally taking ownership that other things were going on her. I received some beautiful messages from other grammer’s with suggestions or saying that they were experiencing similar things and you are not alone.
Complete Side Note :
Social media gets a lot of slack and often for completely justified reasons but It such a beautiful world I have found myself in where I am able to easily converse with people that have so much empathy and understanding
Okay where was I.. Ah yes so I went to get my blood test done and then had a Doctor’s appointment the next day. I had a plan I was going to talk about all my symptoms and try and get answers .
And then the Migraine hit
I got to my appointment already annoyed by how bright the waiting room was and how loud the receptionist was being. At this point I was partaking in fairly inarticulate mumbling while rocking out my sunglasses inside.
During my appointment where I had hoped to be proactive and get answers I was more of blob
I got my blood test results and managed to ask about the side effect of duloxetine causing disturbed sleep. My doctor stated iron levels were minimally low and I was very Vitamin D deficient. She suggested I start taking a supplement at double the normal dose for a month and then continue on at the maintenance dose. She reassured me that sleep disturbance is a common side effect of duloxetine and to give it another couple of weeks at
After my appointment I felt disheartened. I felt like I had wasted another oppertunity due to my migraines.
After my appointment I was having a whinge debrief to my husband when he suggested that maybe my low vitamin D deficiency was responsible for some of the symptoms I had been experiencing
All of a sudden I saw the light like the sun which apparently I was not getting enough exposure to.
More than half of my new symptoms corresponded with signs and symptoms of Vitamin D deficiency. So considering I have already had a traumatic broken bone….
I have decided to give this Vitamin D theory a go for couple of months and stop assuming the worst that I have every pain syndrome under the sun. ( Maybe if I was under the sun more…)
So yes I haven’t always been Vitamin D deficient and definitely comes with working inside and then becoming chronically ill and photo-phobic. I haven’t been embracing the rays of sun lately. Not to mention my English rose skin burns in 5 mins with the large hole we have in the ozone layer so when I do go outside I generally look like grandma gardening.
So my doctor told me to take Vitamin D supplements (cholecalciferol) double dose for a couple of months due to the level being so low. Other ways I can incorporate Vitamin D is diet
So I have stopped having a lot dairy products due to ethical environmental reasons. The agricultural industry is responsible for a large amount of C02 pollution and unsustainable farming practices. Within our generation and next we will experience food deficits if things don’t change (sorry I got side tracked on a rant). Point being despite not being fully vegan/vegetarian my doctor wants me to take care that I get enough calcium and Vitamin D from dietary sources still.
Free Range Egg yolks
Milk or Fortified soy or almond milk
Sustainable Fished Salmon & other fatty fish
Fortified Orange Juice
So I am going to do my best to boost my Vitamin D and see if the helps my symptoms and then go from there.
So I have been off work from early August on unexpected medical leave. I had to take this leave as I was just unable to work due to my Chronic Refractory Migraines.
It was originally only meant to be for 8 weeks but then got extended for another 6 weeks by my GP.
So during this time I had all these grand plans to get my life back together and start hobbies and do yoga a couple times a week. I was going to set up routines and re-do my diet and start cooking healthier wholefoods. This was was massively unrealistic because while I did have time off work without the guilt of having to call in sick all the time I didn’t actually factor in my plans for still being Chronically Ill.
Now I know that sounds ridiculous how could you not realize that your migraines and everything that comes along with it would stop you from re-organizing your life? But when everyone is telling you time away from work and time off will make you feel better you by into the the hope. I also didn’t just want to want to waste away my time watching Netflix. I now unfortunately have the opposite problem where I feel like I let myself down by not achieving my goals as well as trying to lower my migraine levels so I can find employment somewhere.
The real kicker is during this time my Neurologist has said that he doesn’t think I should go back to my same job. Also not do shift work, work under lots of lights or in stressful situations. That is a lot of jobs in my current occupation. So I am rather bamboozled at what he would like me to do.
Yes I may be being slightly dramatic
Currently I feel like an over qualified sloth.
I am being hard on myself but the sad truth is it is not easy and there are limited options. I can go back to my current employer with a letter from my Neurologist and see if the would accommodate any changes in workplaces. My neurologist still hasn’t filled out my super forms I gave him months ago so I could access a small amount of my super for excess medical expenses and now I have to wait for another letter. This current employer has not been supportive and to access the leave I am currently taking I had to go over the manager, then the director and then to the head of the area to be granted annual leave for a medical reason with medical certificates. So I am not counting on a supportive response. Or I have to apply for a new job and disclose everything and try find someone that won’t just discriminate at the interview level.
How have you dealt with these challenges ?
Have you had a career change due to your health?
Let me know your thoughts
On a positive note to finish on I have an appointment with a headache specialist neurologist next week so I will let you know how that goes.
Sorry I haven’t been blogging much lately. Honestly I have been a bit too lost in my head trying to sort things. I had forgotten how important a burden shared and talked about lightens the load. So I will be trying to do more regular posts
That sentence isn’t really a good one in any circumstance.
It was mid June this year when I was halfway through a hospital stay when my neurologist said the sentence to me. He said to me that he didn’t know what to do anymore.
I was in hospital receiving a ketamine infusion to try and
break the cycle of an acute migraine which had been going on for 15 days and non-responsive
to other abortive treatments such as triptans and a largactil infusion.
It was absolute gut punch as I was still lying in pain feeling
hopeless and uncertain about my job security and I had the specialist who I
respected and listened to telling me he wasn’t sure what to do and we were
running out of options.
At that moment that was the last thing I need to hear. I
would have been happy if he said I don’t know right now but I am going to think
about it and come up with a treatment plan. In the hospital bed I needed hope
and I didn’t get any.
After reflecting on it all post and talking to people, they
explained that maybe my Neurologist may also be experiencing frustration in my
case that it has personally evaded him. This could indeed be the case.
This is when I decided I am the only one that is really
going to have my own interests at heart and be my best advocate. So I decided
to try and do my own research (when I felt up to ) and go to each appointment
with a couple of suggestions or ideas.
I re listened to Migraine World Summit, I read journal articles, I went to dietitian and started writing a list of notes before every appointment about what I want to ask and what I wanted to get out of it.
Suddenly I felt less out of control. I hadn’t found a
miracle answer in all my reading but I was taking back some control on my life
from the disease process and ironically medical professionals.
As a trained medical professional I always appreciated a patient’s input in their care but I don’t think I ever realised until how important it was for them to have that sense of control and power back in their lives. I didn’t realise how easy I was for us as medical professionals to inadvertently to take power away from people that are already feeling so helpless. This is why is is so important for us to make decisions and suggestions regardless how small and have them listened too.
As I type this I ponder with the time line left on my medical leave from work and what I shall do about my career the only thing I know for sure is that this whole experience has taught me how important it is to be an advocate for yourself and others.
Please message me if I can help you with anything x
Ah Brain fog you are my constant…what was I typing?
So what is Brain Fog?
Dr Nancy Hammond Describes brain fog as “ it as if the processes of thinking, understanding, and remembering are not working as they should. It can affect their:
memory, including the ability to store and recall information
use and understanding of language
ability to process and understand information
visual and spatial skills for drawing, recognising shapes, and navigating spaces
ability to calculate and work things out
executive functioning abilities for organising, solving problems, and planning’
She states that
“If one or more of these functions does not work effectively, it can be difficult to understand, focus, and remember things. It can lead to stress and mental fatigue.”
Well Dr Nancy I am thick in the fog.
This morning I got out of bed and went to the bathroom, then put the kettle on and let my dog out. During this time, I lost and found my phone twice.
I then went to switch on my laptop and got the low battery sign. So I put the charger cord in and repeated this process three times until I finally realised the charger cord wasn’t plugged in. #quicklearneroverhere
Then there was our anniversary dinner two nights ago, we were having a lovely dinner and then went to cheers our anniversary and I said “Happy Birthday”. Atleast I got the happy part right right? #happyinsertoccasion #winning
I also find it really hard sometimes when we go out to a café to concentrate on the conversation or the person in front of me as there is so much stimuli, I accidentally tune out without realising and appear really rude.
Does this happen to you at all?
So I looked up what I can do about this fog brain condition besides just putting up with continually getting up with my sentences around the wrong way.
So in the words of the young Zac Efron how do we get our head back in the game?
Ideas to help with Brain fog
Sleep– It is recommend to get between 7 to 9 hours sleep. My sleep hygiene is still something I am working on. I have been listening to this podcast on spotify lately which has helped me got to sleep https://www.boreyoutosleep.com/
Review Medications- I personally take topirimate topiramate as preventive which further increases my brain fog like forgetting how to spell topiramate. But chat to neurologist and general practitioner as with any medication you take the side effects shouldn’t be worse than the desired result.
Have regular Blood tests – Have your Iron, full blood count, electrolytes, B12, omega levels and thyroid functions tested as these are all additional contributions to brain fog if out of normal range. I am going to do this next type I go to the GP. I am someone that knows I should have a routine blood test to check levels at least every 6 months but haven’t had one except when I have been in hospital # nursesaretheworstpatients
Change your diet to include Brain boosting food– So recently I have been focusing on changing my diet. I even went to see a dietitian which was a good starting place for me who highlighted I needed to add more vegetables and fatty acids. This lines up with the Brain boosting foods
Green, leafy vegetables. Leafy greens such as kale, spinach, collards, and broccoli are rich in brain-healthy nutrients like vitamin K, lutein, folate, and beta carotene.
Fatty fish. Fatty fish are abundant sources of omega-3 fatty acids, healthy unsaturated fats that have been linked to lower blood levels of beta-amyloid—the protein that forms damaging clumps in the brains of people with Alzheimer’s disease. Try to eat fish at least twice a week, but choose varieties that are low in mercury, such as salmon, cod, canned light tuna, and pollack. If you’re not a fan of fish try flaxseeds, avocados, and walnuts.
Berries. Flavonoids, the natural plant pigments that give berries their brilliant hues, also help improve memory, research shows.
Tea and coffee. The caffeine in your morning cup of coffee or tea might offer more than just a short-term concentration boost. In a 2014 study published in The Journal of Nutrition, participants with higher caffeine consumption scored better on tests of mental function.
Walnuts. Nuts are excellent sources of protein and healthy fats, and one type of nut in particular might also improve memory. A 2015 study from UCLA linked higher walnut consumption to improved cognitive test scores.
Probiotics– I am writing a blog soon about gut health. Keep an eye out for it.
De-stress – Stress or anxiety can also be a cause of brain fog along with everything else it is bad for. So self care is ideal way to combat mental fatigue. You can try meditation, taking a hot bath, enjoy a cup of tea, read a book, or any other 100 self care idea. At the moment I have been listening to audiobooks and playing with my dog as relaxing things.
Exercise– You can literally try and shake off the fog. Sometimes the best way to clear your mind is by moving your body which is something I need to embrace more
Mindlessness– Apparently the key to using mindlessness for health and well-being is to find an activity that you enjoy and that you become immersed in. So like netflix marathon?
So basically what I have gotten out of investigating Brain fog is that you should be doing all the self care things that they recommend for migraines.
Sometimes I feel so overwhelmed by all the recommendations of self care to do on top of medications and doctors appointments etc. It feels like a full time job that I am not keeping up with.
So considering sometimes I can’t remember to have lunch I am going to try and take it easy on myself and try add things into help one thing in at a time.
How do you deal with your brain fog?
How do you all keep up with your self care that recommended for your health?
Thinking of you all and hope you are having a pain free week