Migraine – Diagnosis Day! 

The big day was upon me, I finally get to see Prof. Goadsby, from what I can work out this guy is the God of the migraine world. There has been a long old wait for this appointment, I’m not much of a planner and generally don’t believe in preparation for much! However, this was different, I was armed with reams of notes, a potted history of my year, an audit of my ever growing pharmacy and a symptom list that was depressingly long. I spend my days burying my symptoms as far away from consciousness as humanly possible. The exercise of bringing this all back and detailing all of this was pretty painful. I don’t often dwell in the unfortunate nature of this, well whatever this is, but today was a day to allow myself a little moment. 

Anyway, I was ready, I was called in for my assessment with the registrar. I’ve got used to this dance, you HAVE to ensure you bamboozle them enough to allow you to see the big dog. As a seasoned professional this usually takes me 5 minutes, this one was a tough cookie. She was used to seeing the worst of the worst, you don’t get close to the Prof. without some serious suffering under your belt. But I got the notes out and got to whining, it took me over a hour to regale the whole ordeal. But I was through, I qualified to see the Prof. And there it was the elation of being so screwed you are worthy of an audience with the international specialist! Wahoo! 

As a refresher my symptoms are as follows …

Headache – all of the time, 100% of it, an unrelenting headache. No matter how many times I have explained this to consultant after consultant they have refused to acknowledge it, the closest I have managed is ‘this patient suffers almost daily headaches’ 

Vertigo – from a constant feeling of one too many shandys, escalating to full room spin

Visual auras – these come in the form of glittery vision, like being in the starting credits of Star Trek, black spots and tunnel vision 

Naseau – I spent at least one full year being sick every day, this is pretty much under control now but I do feel sick the majority of the time

Hallucinations – now diagnosed as ‘Alice in Wonderland Syndrome’. But in layman’s  terms I feel like I am a giant and other things are tiny OR I am tiny and everything else is enormous, jazzy huh! 

Brain fog – migraine suffers will understand this, for the rest of you just imagine trying to work though a off the richter, gale force hangover

Nystagmus – uncontrollable eye movements 

Numbess – I now haven’t felt the right hand side of my face for about 9 months on and off, sometimes this expands down to my arm and leg

They are the main day to day contenders and then in acute periods of migraines I also get the added joys of:  zero control of my body temperature; a whole host of weird and wonderful hallucinations; weakness and lack of coordination of my right hand side; black outs and loss of speech. 

So I have finally won an audience with this guy and the registrar hits him with my case. He makes all the right noises, full of hmm’s, and reallys?! I definitely had his interest. He ever reassured me that I really have had a terrible time of it, which was greatly appreciated. He assured me this was rare and I had definitely got the unfortunate end of a really shitty stick. All wonderful news. He paused and then hit me with it… ‘You’ve got New Daily Persistant Headache and Chronic Migraine with Brain Stem Aura.’ Fantastic, so what the well does this all mean and why the hell has it happened to me!?

Turns out you can either get migraines or you can’t, you brain is either wired that way or it isn’t. Unfortunately mine is, but even more unfortunately I got a ‘flu-like’ illness at the start of January  and this triggered a migraine and my brain now can’t turn this off. And just for the nail in the coffin it might not ever go away. The Prof. says he has seen it go away as quickly as it came on but I shouldn’t hold my breath, at least not for the next 3 years! 

But a cure isn’t the only root, this guy, along with walking a fine line between insanity and genius, is all about the therapy. So the options are D.H.E. 45 (dihydroergotamine mesylate) infusions, this means periods of 5 days in hospital every 3-6 months OR the new treatment TMS  (Transcranial magnetic stimulation). This is the preferred option and from what I can work out is some sort of space age gadget that I wear on my head that sends signals into my brain to try and reprogramme my brain and convince it to not have a migraine. The Prof. claims this is really effective and especially for people that suffer from auras, which I do. So this is our next POA! He claims, with this new therapy, including my current concoction of drugs (flunarazine, amitryptarlyn and riboflavin) we can manage it so well that I might not even notice I have got it. Well wouldn’t that be bloody fantastic, watch.this.space!! 

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Migraine – Work vs. Life

Just a warning, this post will get progressively more positive, this is to match the last month I’ve had. Hold in there, I have!

It’s safe to say December, for the most part, was not my month. I am unsure which one has but anyway let’s not dwell on that… I’ve been advised that I needed to reassess my work life, the nice way of saying, stop going to work, you idiot! Anyway, what do these doctors know hey?! As a self professed head burying professional, I decided to optimistically continue with going to work, even if it is more body than mind in attendance. With the attendance management warning hanging over my head, a few days off was just not an option. I decided on Plan B, less hours, more tea and hiding in the toilet, a much more viable option if you want to keep your job.

Making it through the last couple of weeks was horrendously difficult, bringing back most, if not all my symptoms. To maintain getting to work I was in the process of upping my dose of Flunarazine. I was naively overjoyed at the time by this BUT, it very quickly caused an all time, chemically induced low. It took me three weeks to realise that it really wasn’t me, sneaking off for a quick cry, for the third time that day. The scales of doom strike again, it is so hard when playing with your medications on a week by week basis to work out what on earth is happening. So I decided I couldn’t rely on this wonder-drug for everything, but with the lowered dose the cloud did lift! To compensate for me working, Peggy the walking pharmacy lives on, with the alternative prescriptions list quickly getting back to its former levels. Some days requiring 16 tablets just to get me through the day. Maybe a new career as a Pharmacist is the way forward. Let’s pop it in here that I haven’t felt my face for 3 months, no idea why. If anyone wishes to hit me, the right side of my face is totally up for grabs!

The moan continues…And another thing, I was struck down with the winter lurg. Sure, it’s not welcomed by anyone but this year, with everything else, it felt like the world was really flicking me the big V’s. This ‘cold’ just seemed like a mammoth hurdle, lasting 3 long weeks, which rest assumed, everyone around me heard all about. Finally something tangible and visible to moan about. Being ill when you’re already ill is so tough and was also teamed with the fear that it may just be some additional bolt on symptoms, that might never leave! But, who needs their balance or vision anyway… and I kept telling myself the sickness will only help keep the Christmas weight gain at bay!

And one last thing, then I’ll stop whining. I do enjoy some amateur dramatics but this time it was justified, they forgot my referral, can you bloody believe it!? Just never made it, so I have been patiently being a patient patient waiting to see the next Neuro on the list, since August. After successfully throwing all my toys and the kitchen sink out of the pram the referral has been made, 4 months late. I’m done ranting but learn my lesson, don’t believe anything until you’ve seen it in writing. My niece informs me that even Santa sends a letter these days!

This is where is gets better, I made it through, and low and behold the holiday I had been holding out for came ….and they were exceptional! I can safely say between the combination of 16 hours sleep a night, the Devon sea air and no stresses in the world, health wise it’s the best I’ve felt all year! I felt like myself again, obviously me with a headache, but me all the same! Which of course, led to some crazy nights out but if anyone is living with a chronic condition you learn to make the most of any lulls in the storm. Consider me to be reckless or just dancing in the rain! In conclusion, I am either getting better, preferred option, incase you were wondering. OR I can’t continue to do my job, not the preferred option.

Migraine – How’s your head? How’s your lifestyle?

So I’ve been a little quiet, mostly because things really have been going swimmingly! I have had 8 headachy but happy weeks. Back to work, a night out or two, even a blooming holiday if you will…slap me sideways and call me smiley! But then, then it all started to go a little wrong. Maybe I ran before I could walk, this would be the bit where I fall on my face! I mean don’t get me wrong, after this year, I am happy to roll with the punches, but what happens when you’re firmly back in the ring?

Where has it all gone wrong?? Well, the return to work was going really quite well, a few knocks, but nothing 12 hours a night couldn’t fix. I made my return slowly, 8 hours, 12 hours, 16 hours, 20 hours, 24 hours, 30 hours …BANG! That’s where the brain then said no, enough. So we saw the return of the vertigo, the sickness, headache back in force, visual auras, even throwing in some tinnitus for good measure. After two weeks of returning to a grumpy, dizzy, vomiting, sofa bound recluse. I think the only conclusion can be, I am not ready for full time work.

This is a frustrating, difficult and emotive emission to make. However, I embark on my request to work shorter hours with a flea firmly in my ear from the Dr’s! Win 1, crisis adverted, fully supported by my manager. Phew! I assumed my Occupation Health Advisor would be an easy obstacle to vault. How wrong I was. While I came with a thought out proposal she came with helpful comments such as, ‘the only reason you couldn’t do full hours is MS or cancer’. Do not get me wrong this is not something I would not wish on any poor soul but, blow me down, is this all not enough! ‘And I look fine anyway.’ I forgive her this silly comment and continue my plea to drop back down to 30 hours, temporarily, pretty please! This was met with the suitably patronising…’my love, its irrelevant what you consultant thinks, he doesn’t pay your wages’. Forgive me tax payers for this but I really am trying my bloody best. I promise, I am giving you everything I have. But no, this isn’t adequate, I must attend for the extra 6 hours, just because. After being hit with this assault I was kindly asked if I thought the job was for me and how I may want to consider something else. But the closing remarks, just to give you a flavour or the remarkable advisor she is… ‘don’t worry if you move onto the dismissal process, it’s not really a big deal!’ Last time I checked we were supposed to be on Team Don’t Get Sacked’?! Anyway, I have managed to squeeze four weeks of reduced hours, not because I am entitled, but because she is a compassionate! That’s compassion, apparently!

Fortunately, my ever growing medical team don’t feel the same way and still maintain that I am not that well and my health IS the most important thing. Whilst awaiting the Prof, I’ve remained under the watchful eye of Dr K. I have even gained direct phone numbers to him and, I am almost certainly on Nick’s Christmas card list, Dr K’s secretary. Dr K had warned me last month that it was time for the wonder drug withdrawal. However, after one of my best renditions of ‘blonde on the verge of imminent breakdown’, I managed to postpone this. This warning was etched on my achy head and even my dad’s suggestion of locating it on eBay didn’t help to settle my apprehensions.

So the review was upon us and whilst considering by current work predicament, I had been practising act two. This performance was timed impeccably well for the new influx of registrars. A request was made that I terrorise these fresh faces and I of course accepted! The title of this blog came from the poor guy who had to sit through the whole 11 month story. The conclusion was a shake of the head and a ‘wow, horrible, I’m sorry, I’m just really sorry’. This performance did win me another month and an increased dose of the wonder drug! But I have been warned, again, this is not a long term solution! My problem with this is…what is the solution Dr K, what is it?! I’ve got used to Dr K’s increasing brood and I am still ever hopeful one of the little blighters can come up with a new hypothesis, but I do wish they would hurry up.

In response to the question my head is still achey and my lifestyle has been reduced to weigh each and every proposal up on the neurology nightmare scales. I have learnt the price of fun… This currently ranges from, 3-7 days of symptomatic sofa surfing or more frequently, completely out of my price range. Where is your advert for that MasterCard!? But alas I have given in and ordered another pre paid prescription card, wild!

Got to be time for a quote – The struggle you’re in today is developing the strength for tomorrow!

Migraine – Dare to be the best you can be!

This is a public service announcement – ‘we are running a reduced service, the reduced service is running well’. Well done South West Trains, you’ve summed up my life perfectly. Six week on, where are we up to? Let’s get it out there, clear the air, I still have a headache, yes STILL, yes all of the time and yes…REALLY! That’s nine months of migraine, just for the record!

I’ll cover the high level detail so you can all rejoice and stop reading, then I’ll fill in the details. The sun has got his hat on, not literally, I haven’t emigrated, winters here! But, things are really looking up. I can open my eyes and when I do the room doesn’t spin, I can feel my arms/legs and face, I get up, I even get dressed nowadays and hold the phone, this is huge… I go to work! Real life genuine work! If you feel satisfied with this version of my life, it is true, but do stop reading now.

If that’s Summer, in reality, it’s more like Autumn. It’s mild, if you see the sun you’re pleasantly surprised but there is a strong likelihood of rain. Sometimes the room does spin, sometimes I still feel awful and sometimes I don’t get dressed, okay maybe I can’t blame that on my head. The ringing ears, glittery vision and brain burn is never too far away and does rear its double vision head. BUT the symptoms I was experiencing on an hour by hour basis are now a weekly memo, rather than the story of my life. Let’s not brush over this, this is a huge movement, I go out, I eat out, I work, I smile A LOT!!

However, Winter did arrive, early unfortunately. This came in the form of HR and their not so helpful sidekick, occupational health. This is where policy meets the people, hello degree I knew you would come in handy. Of course ‘my health is the most important thing’ and policy has to be ‘tailored to my needs’. The caveat being, ONLY if it fits perfectly inline with the policy that HR dictate for every other person that has ever been unwell, perfect! As an objective logical person, which I can pretend to be, my attendance is NOT acceptable. And I couldn’t agree more, paying me to not work, definitely does not fit the business need. But all that said, I could really do without loosing my job. I am working part time, its hard, really hard but I will need to resume full time working within 6 weeks or risk dismissal. Thats PC for we will sack you and soon!

I don’t know if it’s the drugs or just my pesky brain or both, but I cannot focus. I have the concentration span of, well of the child that’s screaming on my train at the moment! Did I mention I have a headache? Anyway, it’s like a fog that comes down and will not lift. The foggiest of all the day dreams, imagine Friday post the thirstiest Thursday! But, if that’s the price I have to pay for being able to feel my limbs and be able to raise myself from my pit on a daily basis, I’ll take it, I’ll take it daily, 5mg, never more, NEVER less. Work for the moment is more body than mind, but I am moving in the right direction…lets just hope that direction isn’t the job centre.

The stair gate is still up and I am still waiting, patiently, to see Professor Migraine. But, a tunnel has been built and there is a Glastonbury shaped light at the end of it. Yes, I foolishly bought tickets and and it probably is massively optimistic. Maybe it’s a waste of money, I see it as a very small price to pay for the dream of having my life back by June 2015! Dr K, the only neurologist that will keep me on his books, on my last visit punched the air in elation!! We are friends again and I fully support his positivity. We are not quite there but end with some wiser words than I can manage, a quote…

‘If you’re facing in the right direction all you have to do is keep walking!’

Migraine – Neurology vs. Normality

This week has seen my first birthday as a neurologist’s nightmare and marking almost 8 months of migraine! I am free from the confines of the ward and ordered to ‘resume normality’ SLOWLY. I have managed to baffle many a brain, including my own, but this week has finally seen the defeat of three more. My latest neurology team have finally admitted defeat and decided the situation is officially bizarre and requires ‘the Prof’. From what I can see this guy is the cream of the crop. Fantastic news, but also means he comes with a hefty waiting list. Never did I ever think a doctors appointment would be on my birthday list!

My birthday has been something that I had dreaded for the past few months. The expectation I would be a) awake b) happy and c) able to celebrate was more pressure than was welcome. But two weeks after my release from hospital I got a new lease of life. The pain in my right hand side has lifted, the brain fog has cleared, I can see clearly for at least 75% of the day. Of course I still have a headache and the sickness remain but after all this time, at least I still have something to moan about. If this wasn’t a cause for celebration, I don’t know what is. I utilised my new love of baking and celebrate we did!

One of my least favourite things, apart from migraine, is packing! But I did have to spend my birthday moving my life to the Thameside and in under the watchful eye of my family. I can safely say, although a heart wrenching decision, it is the best thing I could have done. For my health and for my happiness. I am being spoilt to within an inch of my life and I am loving every second of it! And even I can work out that 3 weeks of pampering is definitely going a long way to explain the fact, I finally feel like a Peggy again! After 8 long months, at times, this is something I never thought I’d say. Hooray!

The danger of this new lease of life is I have to constantly keep myself in check. I am like an over excited puppy/ toddler. An insatiable desire to see and do everything. I want to merrily run, hop and skip my way back to normality. But I also know far too well I could be metaphorically due a fall head first down the stairs or maybe more dramatically run into moving traffic. So, now what I really need is a stair gate to my own life!

I am now attempting to become a migraine mastermind. What have I learnt? Routine, rest and hydration, back to the toddler analogy. I have attempted to follow as much advice as I can without becoming a hermit or eradicating everything I like to eat. Seems a shame to waste this new found appetite, since it’s been so sorely missed! But Aspartame has gone, along with citrus fruits and chocolate but I’ll be honest that’s as far as I have got with it. BUT sleep I can, and will!

‘Keep your eyes on the stars and your feet on the ground!’ – Thomas Roosevelt

As per usual the medical menu
0.5mg Flunarazine
2 x 8mg Ondasatron
2 x 200mg Riboflavin

Pain medication
900mg Asprin (+ Omeprazole)
Injections of Sumatriptan

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Migraine – Losing the battle, to win the war!

On reflection I’ve always had it all, I’ve had my health, happiness and favourable winds right behind me. Or in the words of my dad, ‘you could fall in shit and still come out smelling of roses’. Even after having knee surgery, the outcome of this was being carried to my exams by the rugby team and being driven about by the boy I fancied! I’ve got that unfaltering optimism that would back this up, this might sound smug, it isn’t supposed to. What I am trying to say is, the only evidence base I have suggests ‘everything WILL be alright’!

One of these things has been taken out of my control, that’s the health bit. Just to recap, I have now totted up 7 months and 2 weeks of continual headache and associated symptoms, 10 full blown migraine attacks (lasting up to 2 weeks at a time), 31 days in hospital, 5 consultants and a partridge in a pear tree… No that isn’t it, let us not forget the genuinely uncountable amount of prescriptions I have tried, tested and thrown out.

The good bit, I am out of hospital and on a new drug regime. This I evaluate nervously as, ‘actually going quite well’. Not astounding I know BUT, as my consultant reminds me yet again, neurology is complicated and these things take time. The new drugs are the Flunarazine, as talked about in my last blog and now Ondansatron. This is an anti sickness drug used for people undergoing chemotherapy, seems a little drastic. After 7 months of almost continual practice of the ‘reverse chew’, I just don’t care what the label says, it has worked. Now, let’s not get ahead of ourselves, I’ve had 3 completely sick free days, which might not sound huge, but it really really is!

All sounds rosey, right? This is where realistic me and optimist me meet. Not a common meeting as I am still wholly set on, taking over the world, marrying Prince Charming and having a castle filled with orphan children to love and care for. Anyway, I divulge mostly because this is the tricky bit. I am on the up, I hope, and I dream of normality resuming, shortly. By this I mean work and play, with a side of Prosecco with any luck. BUT they still aren’t really sure what is going on in this noggin of mine, and I hate to say it I still DO have a headache. So, I have 2 weeks and some drug based alterations to make, I will then be reviewed. If this isn’t successful, despite their best efforts, I will be sent onwards to a top dog, super genius, migraine man! He’s a Professor, jazzy!

In short, the hope is still alive and well but I am not entirely fixed. The happiness bit, the bit I can control, I now appear to be operating in a ‘damage limitation’ sphere. So what do I mean by the title of this blog? Fear not, I haven’t turned all current affairs, the war is getting my life completely back, ship shape. The battle is my living arrangement. So I hereby accept defeat, not on the war, but on the battle. I have decided to give up my house and move in with my Aunt. Although this is pretty heart wrenching and the only big decision I have had to make thus far, it does have it’s perks. I am opting out of living with my friends and the table tennis lounge. But, I am opting in for the love, care and most importantly the cooking of my family. Have a mentioned the Thames side view?? Hello shit pile and hello the big ol’ bunch of roses!

“Better to light one small candle than to curse the darkness.” — Chinese Proverb

For those migrainous/medical folk out there, I’ve gone from – (times a day x dose)

Propranolol (3 x 20mg)
Toprimate (2 x 30mg)
Betahistine (3 x 16mg)
Pizotofen (3 x 0.5mg)
Domperidone (2 x 10mg)
Omeprazole (2 x 20mg)
Riboflavin (2 x 200mg)
Paracetamol
Ibuprofen (both painkillers only allowed 2 out of 7 days, but realistically just as little as I could bare)

That was a grand total of between 28-44 tablets keeping me upright and sometimes even out if bed. On admission into hospital this was deemed ‘a little too excessive’ so now with 3 weeks of experiments!

Flunarazine (1 x 5mg)
Ondansatron (2 x 8mg)
Riboflavin (1 x 400mg)

As you can see the drugs chart has been cleared, I can tell you now it wasn’t painless so anyone embarking on this process I feel for you! This new regime is at the moment being supplements with the Betahsitine (anti vertigo) as I am too much of a wimp to say goodbye to it after 6 months but within 3 weeks I’ll be clean, I promise, I don’t promise, but I will give it a go!

I am a Unicorn! A migraneous Unicorn!

No, I haven’t completely lost it, yet! A doctor in training and also friend of mine described the process of diagnosis to me like this… If you hear hooves, 95% of the time it will be a Horse, 4% of the time it will be a Zebra, 1% of the time it will be a Unicorn. I am on Day 19 in hospital and that paired with the perplexed faces of the fifth neurology consultant assures me, I am a certified Unicorn. Being special, unique, a Unicorn, in many situation would be a cause of elation. However, on a neurology ward or I imagine during a smear test…not so much!

The weekend was a success, nothing awful happened and I even made it off the premises! This was a great reminder of what it is I am aiming to win back with all this pain and misery. It’s not all misery, I am really warming to the lemon sponge and non descript potato based ‘pies’, the first AND second time I eat them! I am feeing particular crass this morning, sorry about that. The upshot of this incident free weekend is that I am tolerating the new drug, flunarazine. Which is just great news as it appears to be my only hope at present. Although the pain has gone, not much progress has been made. The sickness remains as does the headache and visual disturbances, aching liver and the feeling ‘drunk’ has most certainly returned.

The week begins and this marks the return of my consultant, the original Dr K. With Plan C not being all we hoped and dreamed, Dr D ‘Maverick’ is quick to relinquish me from his care, with a shrug of the shoulders and a disheartening ‘I’m sorry, I really thought it would work’, we are off again. This is bit where I give up my stripes and earn me a horn! Dr K after months of his best efforts admits defeat. I have perplexed all three top neuro bods, they have decided I need a special specialist! The level of ‘special’ I require is a pretty elite club it turns out, there are only a few internationally. Not what I wanted to hear, but alas the search begins! No news on this yet so feel free to chip in at any point fellow migraineurs!

In the meantime, where does this leave me? Well as Dr K kindly pointed out we can’t really let you loose in a worse state than you came in. Agreed Dr K, agreed! So time to ‘get me stable’. This week I marked the seven months of migraine with learning to inject myself, a rare and unwelcome treat for my sins. So I am now onto trialling the Sumatriptan Subject, a 6mg shot to try and stem any severe attacks if they hit me. What this baby does is once you’ve been brave/foolish enough to push the button that fires a needle into your thigh is makes your blood vessels constrict, stopping the migraine, thats the aim of the game if you’d lost track at any point. I’d been warned about the tightness in the chest you may experience and the burning you may feel in your head! But these are just cool, calm words. HOLY MOLY (yes that is what I said, honest) I cannot explain the shock and fear when this actually happens, I thought it was over, the big lights out! After all this can you believe, you know whats coming don’t you, I’ve still got a headache!!

As usual, lets not dwell, there is something potentially worse on the horizon…The bit I have been dreading has arrived and I knew it would, time to ‘clear the drugs chart’. I take a lot of drugs, beta blockers, anti inflammatories for the brain, vestibular suppressants, anti emetics, gastro resistants, Riboflavin and all the new stuff they are trying on top. As of yesterday the process of weening me off these has started. When the consultant says ‘we need to be brave’! I believe what’s happened here is he has confused, being brave and being bold. He really needed two parts to that sentence, ‘I am going to be bold and you need to be brave’. At the moment we have halved the beta blockers and the Pizotofen and started new anti emetic via IV… Lets see what this weekend brings!

So, the time has come to dip into my cliche repertoire, pick what you will to mark the fourth week in hospital –

What doesn’t kill you make you stronger
These things are sent to try us
Everything will be alright in the end

I am going to go for something in the management consultatancy sphere, keep my work brain a float… We are where we are!IMG_7610.JPG