Migraines and medication

I suffer with/from chronic migraines. This is defined as having headaches on at least 15 days per month. I've also been diagnosed with stabbing migraine.

They dominate and control my life.

There is no link with my menstrual cycle, food/drink, travel, lack of or too much sleep.

I know this because I keep a food diary, I haven't had a period for 3 years, they didn't worsen or improve being perimenopausal or being menopausal.

Over the past year I have found a concoction of tablets that will suppress a migraine when it breaks out. It is the first time that I have managed (with support from a new GP) to find something to treat myself at home with. Previously severe migraines have lasted 4-5 days and on occasions up to 9 days where I've had to go into hospital for treatment, these usually happen about once a year..

It involves paracetamol, triptan, aspirin and an anti sickness tablet. To be repeated after 2 hours if no improvement.

This is a record of the number of days since the start of the year I have taken the rescue meds, listed above. Highlighted in pink.

It is not the number of days I've had a migraine or a headache, just the days I've taken the meds, the headaches/migraines will have occurred on the days in-between also. I've also been taking 50mg of Topiramate daily as a preventative since my last hospital visit in November 2023.

The neurologist has booked a MRI and has increased my medication for the past 2 weeks to 100mg and as from today, it has increased to 150mg of Topiramate a day.

I've started to record the actual days of head pain now, not just the medication taken.

The increase of Topiramate has 4 months to take effect before I see the neurologist after my MRI, if it doesn't he'll be referring me to the QE Hospital in Birmingham for consideration of CGRP antagonists.

One of the possible causes for my migraines is stress. I have Chronic Migraines. I've had them my entire life. They drain me, they have a huge impact on my physical, emotional and mental well being. I have auras, I can feel one coming on. I can almost time when it is going to hit. I can hold it off with medication. not fully, it's still there. I can just about function to go to work, or to do things with the family, or get through the housework, or sort the bills, or drive the car, or cook the tea, but I can only manage any of this stuff at 50%. I can't be my usual cheery self. I can't answer a simple question at the same time. I can't slap a smile on my face and just get on with multi tasking. I can't just juggle several things at the same time. I'm short, I'm snappy, I get angry......I'm in bloody pain. 

No I can't go to bed and lie down. it doesn't stop. I can't just switch it off. The light burns, the noise is amplified. I can hear lights buzzing like a vuvuzela in my ear, I can taste metal, I can smell toast. I get electric shocks whizzing around my body, the slightest touch from anyone is like I'm being stabbed. I'm not over reacting.

AND THIS ALL HAPPENS BEFORE THE MIGRAINE. THIS CAN LAST FOR 2-3 DAYS.

Then 2-3 days of pain in my head, like a brick is being hit non stop against my head. I want to smack my head against a wall. I want to rip my head open.

Then relief? NO. 2-3 days of a hangover, tiredness, dry eyes, confusion, I forget simple words like 'cup' I lose the ability to answer a simple question or I answer it in my head. I'm putting all my energy into functioning. Into going to work, into appearing sane and normal, into doing my job, into cooking a meal, into turning the washing machine on, into not looking or sounding weird when I order a coffee or speak to a friend. I'm also nauseous throughout the 3 stages.

So yes, I am stressed, I get depressed, sometimes I find myself crying, I'm exhausted, even when I sleep all night, even when I have a lazy day with no external stress. I'm not sad. 

The side effects of Topiramate at the moment as I increase the dose are the weirdest thing ever. I have this period twice a day within an hour of the meds where I feel drunk, my actions and brain aren't drunk but my body is. I've timed taking the tablets so it doesn't interfere with working. I have a silly grin on my face and feel uncoordinated, but actually everything works together. I also have whole body pins and needles that just come, stay for about 10 mins, then disappear. I've been told all of this is transient and it will settle in a week or two.

I've lost most of my taste, especially with fizzy drinks, they just taste flat and my mouth feels dry. I'm also extremely chilled out, almost switched off/tuned out from things. I can pay attention to what it going on, such as driving, but I've tuned out trival things, such as conversations, TV,/radio, background noises. I can hear them, but I've no interest in them.

I lost a stone in weight in the first 7 months of taking Topiramate and I have been keeping a record of my food intake on an app as I genuinely forget to eat a lot of the time and really don't feel hungry most of the time. I've gone back to meal planning to make sure I get enough of the right calories each day, as it's so easy to just not eat, when your brain tells you you're not hungry. I don't need to lose any more weight.

However at the moment I'm eating and eating lots. Seeking out savoury and sweet foods and drinking all the time. This is a sign a migraine is on the way, but until the auras start, I can't take the preventative as it won't work, I just have to keep a close eye on it and wait for the right moment.

There's no point going to bed and resting, the migraine will come regardless. 

There's no point lying down in a darkened room and resting when I get a migraine, the pain and length of the migraine follows a pattern.

Fingers crossed the new medication settles down and is effective and I can have some quality of life without pain.

Me and my migraines

I've had migraines since I was small. Until a few years ago, there was nothing I could do to minimise them. I am a regular visitor to hospital with migraines lasting up to 9 days. I've tried all types of medications and had all types of treatments from acupuncture to botox.

4 years ago I was diagnosed with a wheat intolerance and my migraine episodes have almost halved, but the intensity of the ones I do get are no better and aren't any easier to treat.

Lack of sleep, dehydration, long journeys, sitting too long, not eating regularly, over indulging with food/drink can all trigger a migraine. Cheese, chocolate, alcohol, caffeine aren't triggers. In fact the last time I was admitted to hospital in November 2023, I was given a can of coke and a coffee by the nurse whilst waiting for the consultant to see me. 

I keep a food diary, I used to keep a menstrual diary, there has never been a link with hormones/periods, I exercise regularly, but not excessively. I also keep a diary of my migraines, symptoms, been doing it for years. Finally I've been referred to a Neurologist so maybe they'll want to see it all, maybe they won't.

I'm 52. I've learnt to live with migraines, I've learnt to not let them spoil family days out, interfere with my work, activities, holidays. I've heard many times that if they don't interfere with the above then they can't be that severe. 

Let me try and explain what a migraine is for me.

It starts with one or several of the following:

The smell of burning toast

Amplified sounds

Lights hurt

Sensitive to touch

Slurred words

Inability to identify every day objects

Inability to answer simple questions

Nausea

These can last for 2-3 days and continue throughout the migraine and for 2-3 days afterwards. This is the point where I MUST take my medication. Triptans, anti sickness tablets, paracetamol. 3 times a day. If by the end of day 1 the pain has kicked in I then take 900mg of aspirin 3 times a day with the above, for up to 3 days, then seek medical assistance. The GP at this point usually sends me to hospital, but  sit for 7+ hours in A&E in pain with bright lights, loud noises, I'm put on a drip, the pain goes away. At this point I go off work sick and I'm literally smacking my head against the wall in desperation. It takes a further 2-3 days for me to recover fully.

I also take regular preventative medication, previously beta blockers, then pizotifin. After a while these meds stopped working and the dose had to be increased, side effects were increased appetite and inevitable weight gain.

I'm currently on topimate, side effects weight loss (which has settled now) but I'm still getting break through migraines, but without the pain. I still have to take the additional meds. I'm not sleeping on these meds, on the previous ones I was getting up to 10 hours a night.

In between migraines I get weird electric stabbing pains around my body that last for a couple of seconds and patches of skin that feel like it's on fire. I get dizzy, have pins and needles and numbness in my hands, but don't have a reduction in strength, I have a tightness around my chest, that squeezes me, I get breathless, especially walking up stairs, I have bad fatigue, but don't sleep and my eyes hurt and are tired (Ophthalmology and Retina Clinic involved for past 2 years) That could be the B12 or the ferritin deficiency or the cause of the migraines, no one seems to be linking everything together, or it might not be linked in anyway.

The pain of the migraines is one sided, usually right sided and forces my eye closed, the back of neck is painful and my shoulders hunch. Pressing on the site relieves the pain as does heat and strangely enough so does sleep, but when I wake up, the pain returns. The pain takes over everything, it is the only thing that is happening in my body. It is so intense that I often feel that the only way to relieve it is to hit my head against the wall. It makes me shout, swear, angry, it isolates me from people, it causes rows because I look ok, I'm functioning, I'm going to work, if it was that bad, I would go to bed. 

But if I went to bed, I would spend half the month in bed, half the month not going to work, not going out, not doing anything and I won't let the migraines control my life.

Dealing with chronic pain and flying

I've had chronic neck pain for 24 years years, since an assault in the workplace.

My chronic pain is constant, it is 24/7. I am aware of the pain every waking minute of my life.

My chronic pain is no worse than anyone else's and probably better than a lot of other peoples.

My chronic pain can't be alleviated with meds or a few stretches.

Some days my chronic pain is just there, other days it's flare up and is worse, these I call 'bad days' restricting my movements and actions. Most days are just NOT bad days.

As a result of chronic pain, I sit, walk and move with purpose. I'm constantly changing position, stretching my neck, slouching my back to take the pressure off my shoulders, I end up with a bad lower back and in turn hip pain. I can exercise, I can take meds for that, I can improve the pain levels. I can make it manageable, but there's not a day when I'm not aware of it.

I get cramps in my wrists and pins and needles in my hands and fingers, making fine motor skills difficult such as writing and taking lids off jars etc. Repetitive strain from ironing, hoovering, sweeping and mopping are getting worse and I often can't pick things up or find myself just dropping items such as tea cups.

I have a 14 hour flight ahead of me next week. I recently took a 7 hour flight in business class, I was able to lie down, not flat, and stretch my legs, but I was still in tears after 5 hours, rather than the usual 2 hours. The only time my pain doesn't flare up is when I'm either walking or lying down flat. Neither of which I can do on a 14 hour flight and I doubt I'd bag an upgrade to 1st class.

The most I can hope for is a row of seats all to myself. It happens fairly often to me. Even 3 seats means I can lie flat on my back, legs bent and can curl up on either side. Plus sleeping does help to pass the time.

I've had numerous surgeries, treatments (physio, acupuncture, chiropractic) and tried various medications, but only ever get short term relief and the more meds I take, the more I need and the side effects of some of them such as Gabapentin have been horrendous.

The 14 hour flight and time difference will wipe we out regardless of the added pain on top, so my plan when I arrive in Australia is to check into the hotel, have a deep hot bath and go to bed. I will merge from my room when I return to normal, of which my normal is chronic pain, just without the tears.

Identifying and dealing with expat depression

We all get down days, in fact I'm having down days right now, have been for the past few weeks, but I'm not depressed. I've identified the signs of what triggers my depression and I'm hoping that taking these basic steps will prevent me sinking back into it.

I first suffered with depression when we moved to South Africa. Eventually after spending days not getting dressed, staying in bed, crying and barely functioning, hubby took me to the doctors, I was given medication and received counselling and I talked about it, loud and clear and often. I learnt to deal with it and identify the triggers.

We've now relocated to Dubai, it was stressful, there were issues, but somehow all this kept me going until I hit the 6 month mark and I could feel myself slipping again, crying, feelings of loneliness and helplessness. But I'm prepared this time, I know how it all 'feels' and I'm better equipped to deal with it.

Moving is a very stressful situation, but you when move to a new country away from everyone and everything you know, you are stripped of your identity, EVERYTHING you know changes.

When we moved to SA, I gave up my career, I thought it would be great to finally have some 'me time' after raising children since 1992, including 2 step children. I became a SAHM over night.

With this move to Dubai, I'm not even a SAHM anymore, I'm just a SAH. I've had to go back to the beginning, networking, exploring, getting out there.

I'm not a shy person, I'm outgoing and sometimes a little over friendly. I can come over as being too pushy, desperate even, but I do get the hint. I can tell if this is just going to be a friendly coffee or a life long friend.

I've not been coping very well at the moment. Hubby has been away more than he's been at home. I'm applying for 3-4 jobs everyday and no one is replying not even to say 'not this time, but thank you' I have only the cat and dog for company, although I have met up with a couple of people for coffee over the past week. I chat daily to my friends back in South Africa, I have plans made for lots of travel that will involve being with lots of people and for the past 3 weeks I've been suffering with a very painful bad back.

I've been quite emotional the past few weeks, I've been lonely and a bit down, but it's too be expected I think with all that is going on and suffering with chronic pain, but I've put together a few coping strategies, that are keeping me going for the time being, which I'd like to share.

I go out every day where there are going to be people, even if it's just over the road to the local coffee shop. I also walk the dog daily and tend to get on the beach in the early evening as much as possible. I've had daily appointments at the physio which has forced me to get dressed every day and wait for the call to say there has been a cancellation, can I come in now?

But what helps me the most is my 'going to bed routine'

I've invested in a selection of shower gels and bubble baths. I'm currently favouring chocolate scented ones. I have a shower or a bath every night, read my book and generally just switch off and relax. i leave my phone in the bedroom and I've been ploughing my way few a good few books (bath only, not shower)

 I cleanse and mositurise every night, my skin is very dry in Dubai with all this sun and heat and the water does me no favours at all. 

 I select my clothes for the following day, every night before I go to bed. I know what the weather is going to be like and I add a pashmina to the mix before going out the door.

Having my clothes ready every morning means I have absolutely no excuse not to get dressed and ready for the day, everyday, regardless of what I may or may not have planned for the day. Once dressed, I apply my make up, hair usually gets scooped up into a pony tail.

Most days hubby gets home from work around 5-6pm, we walk the dog, we eat dinner together and as long as he doesn't have any conference calls we go to the beach for a swim. While he's been away I've kept to proper meal times and made an effort the last week to eat breakfast, lunch I tend to have out and then cook for myself in the evenings.

I'm struggling, but I'm talking about it and trying anything to prevent it coming back.

Biokineticist, chronic pain and migraines

I’ve been visiting a Biokineticist and physio since January after yet another referral from yet another doctor after years of medication and surgery to help with chronic neck pain and the side effects of migraines that see me in hospital for treatment at least twice a year.

I’ve suffered with migraines since I was around 5 years of age, the first time I needed more than lying down in a darkened room and over the counter medication I was 15 years of age. The Doctor had to administer medication via an injection and it was put down to hormones and exam pressure. However the migraines continued every few months, until they became once or twice a month after an injury at work.

Over the past 18 years I’ve taken medication from painkillers through to antidepressants and muscle relaxants. I’ve had physio, pain killing injections, Botox, nerve blocks and the most aggressive intervention was the burning of the nerves in my neck under a general anaesthetic.

Migraines for me present with an aura, my vision becomes blurring for anything up to 24 hours prior to an attack, I become confused and my ability to think and do at the same time are diminished. I also feel extremely nauseous before ending up in bed for up to 3 days and often having to visit the hospital for medical intervention that has lasted up to 2 weeks in hospital as the migraines have presented as meningitis and been accompanied with high temperatures.

All treatment has worked, but the effects have worn off quickly and in most cases have been extremely painful, especially the Botox, which although the pain relief lasted the longest, the pain from the injections was unbearable.

The latest referral was as always viewed by me and hubby as ‘we don’t know what else to do with her, she refuses medication’ Having tried various medications and weighing up the side effects, it’s been decided that long term medication isn’t treating the problem, it just eases the pain.

The physio was very aggressive with her treatment of me and each session lasted an hour. This was after an assessment by the biokineticist.

I can’t really explain what a biokineticist is, does or even what qualifications they hold, but I do know that with her help, physical intervention, input from the physio, manipulations now once a week and exercises to do at home, which on paper look simple enough, but leave me exhausted, not only have I lost weight, my appetite has changed and I’m eating less sugary items. My body shape is altering, swimming has become easier, especially front crawl, my breathing has improved, I’m sitting upright, my whole body posture has changed. Long journeys in the car, flights, housework, using the computer for long periods of time have become easier, in fact what I would now consider to be normal, after 18 years of ‘normal’ being severe migraines after any of the above activities.

I’m the UK after 20 hours of travelling, sat in economy and I didn’t have a migraine, maybe a bit tired from lack of sleep but no migraine, the first time ever.  I’ve spent 3 weeks sleeping in different beds, on sofas, using public transport, dragging cases and a 15yo around with me and NO migraines.

I pay around R180/£10 per week to visit the biokineticist. The medical aid covers the cost, but at these prices its affordable and I’d recommend them to everyone suffering with chronic pain.

I received an email from the Biokineticist and she shared the following information:

If someone asks we study BSc sport science degree and then
we do a BSc Biokinetic Hons for a year. Then you have to work a year as an
intern and then you can qualify as a registered biokineticist.