Tuesday, 30 April 2013

Month in Review - April 2013

So March hadn't been a great month, my eye problem was back and I'd been grieving. I was hoping April would be better but sadly I was wrong.

As you can see, there were only five days in total this month where I wasn't in pain and by the end of the month where I am now then those days feel so long ago I can't remember them anymore.

I had six separate migraine attacks this month making it a very bad month.

The first was brought on by a strenuous day in bright sunshine.  My meds initially worked but it returned overnight and I had to ride out the full three days of it.  That meant that I had to miss work on Mon the 8th which was frustrating but as I'd made it through all of March without having to miss a day of work then I wasn't too worried about it.
That night though, I had one of my bouts of insomnia.  I managed to eventually get three hours of sleep before then going to work with a migraine hangover which made the hangover day feel even worse than usual.  Getting through a full day of work with a bad migraine hangover having only got three hours sleep the night before left me completely wiped but I was up and back at work the next morning.  That ended up being too much for me though and by the time I finished work I was back into another migraine.  The meds worked this time though thankfully.

I then picked up a cold.  One of those colds where your nose is just constantly running which meant I was losing fluids that was and I had to keep even more hydrated.  With a cold, or any illness, though comes a migraine and with a day off work on the 12th, along came the migraine too, writing off a day which was meant to be relaxing to help prevent the migraines.

My cold left me on the 15th and finally so did the pain giving me a day with no headache of any kind.

The respite didn't last long though with the next few days building very slowly up to a migraine on the 20th which at least held out until the weekend before starting.  Unfortunately though, I'd used up my allowance of medication days (I'm only allowed 6 medication days in a rolling month according to my specialist at the York Hospital Headache Clinic) meaning I couldn't take any meds for the migraine and I had to ride out the three days without anything to even take the edge off it.  That meant having to miss work on the Monday as well but I was just thankful it was only the one day off and I hadn't had to ride out the full three days all on work days.

With things really busy at work, I tried to make up for the time I'd been off and I put in some extra time and ended up working for over 10 hours on the 24th.  That was a mistake though it didn't feel like a bad thing at the time but maybe it was just a change of routine that was enough to push me over the limit when I was obviously already close to the edge as it was.
On the 25th while I was at work, hunched over at my desk trying to fight the pain swarming into my head, my colleagues wisely told me to get myself home.  I think I left it a little too late though since the meds initially worked but the migraine returned in the evening.  A second dose seemed to get rid of it but the pain woke me at 4am and it was another day of work missed on the 26th causing me great frustration but that frustration would only be counter-productive to my recovery so I tried to put that out of my mind.

It was intermittent the following day on the 27th meaning I saw a little of the weekend and even managed to go to a local fabric shop with some friends but I had another attack trigger by the evening on the 28th, a Sunday night, making me panic that I was going to have to miss yet another day of work the following day to a separate migraine to that which had made me miss the previous working day.
Thankfully though the meds worked and I was back in work again on the Monday morning.

That wasn't the end of that attack though, as the pain grew and grew throughout the day at work and by the end of the day I was in a great deal of pain again, very close to normal migraine pain.

That then brings me to today.  I've had a low-level headache all day which is taking its toll on me by the evening now and I've been a bit depressed today as it feels like so long since I felt normal, since I felt like me again, since I wasn't in pain.

April has been a bad month and I'm not sure what exactly has made it so bad.  I had a cold which I know didn't help, my eye problem has been persistent but at least it has been consistent (not worsening like it was through March) but I think the thing causing the migraines to keep recurring the most might have been my insistence of being at work as much as possible and not really allowing myself to fully recover.  There's not much I can do about that though, if I don't have the actual migraine then I can't call in sick to work and I've been as restful as possible when I haven't been at work but I think I have to try to keep to regular hours at work even when there's lots to do and I'm feeling capable of staying to do them.

Here's to a hopefully better month to come!

Month in Review - March 2013

So at the end of each month I'm going to review how my month has been with regards to migraines.
I'm starting with March 2013 to give a little more context to the month which just finished.

This is how I track my migraines and headaches.  I've been doing it this way since they started three and a half years ago though it's only recently I started recording the headaches as well as the migraines.

I had four migraine attacks in March which is about average as I was previously having 2-4 attacks a month.  What was memorable about March was the neverending headache you can see that started on 11th March, the day I received the news that my uncle had died suddenly.
One of the many migraine threshold lowerers is grief and I was holding that grief inside from the time I got the news until the day of the funeral.  It burst into a migraine on the 15th at the end of a very long week but a big dose of ibuprofen at the very beginning combined with a heavily steamed shower held it back.
The funeral was on the 21st and the migraine arrived at the wake meaning I had to leave quickly and before I wanted to.
It returned twice on the 22nd, once at 1am in the morning and again in the evening whilst I was at the theatre but thankfully I was able to be at work in between.

The migraine on the 4th was pretty standard fare, it came on overnight so the pain woke me in the early morning.  I took my meds and slept some more but I was able to go in to work, albeit a little later than planned and it was caused by hormones as I took my 9 weekly pill break.

The one on the 31st was similar but without sleeping right after taking my meds I was sleepy and tired all day and I was fast asleep by early evening, essentially writing off the day for anything enjoyable or any chores.

February had been a good month so March was disappointing but I mostly put that down to my uncle's sudden and unexpected death - something which certainly won't be happening every month!  My eye problem came back towards the end of February as well and it was worsening throughout March and I believe that also exacerbated the migraines.

Saturday, 27 April 2013

What I've Already Tried

Every migraine sufferer I've spoken to has experienced the exact same thing I have - 'helpful' suggestions.  Everyone seems to know someone whose migraines were 'cured' by something that they think I should try, or they've read something in the news that was apparently a miracle cure which they insist I should be trying or they've just heard general migraine trivia and can't help but tell me about them as though I wouldn't know already.

What non-migraine sufferers (and indeed also some sufferers) don't seem to understand is that migraine is different for every person who experiences them.  The circumstances required to 'trigger' a migraine are complex and is more about thresholds than triggers which I talked about when I discussed my everyday life with migraine.

I thought it might be useful for people who know me, who genuinely want to help me but who don't want to keep helpfully suggesting things I've already tried, if I listed the things I have tried already and those I'm planning to try next.  I expect this list to be a dynamic one which I will update as I try new things.

This isn't a journey I'm going through on my own, just making things up or doing whatever people suggest to me, I have specialist care at the Headache Clinic at York Hospital and I work with them regarding my treatments so if you suggest something which seems legitimate and isn't on my list, please don't be offended if I don't try it.

Without further ado, these are the things I've tried with those I currently use in green:

Acute Treatment

Paracetamol & Codeine

Preventative Treatment

40mg Propranalol 3 times a day
80mg Propranalol 2 times a day
1.5mg Pizotifen once a day

Other Treatments or Potential 'Triggers'

Food Elimination.  I haven't found any food or drink other than alcohol to be a 'trigger' for me.  These are the things I have eliminated to see if my migraines improve without them:
- Alcohol
Citrus Fruits
Pickled foods
Dried fruits

Clinical Psychologist (as referred to by my Headache Clinic)
Acupuncture (as referred to by my Headache Clinic)
Regular Sleep Pattern
Weather Changes
Hormones - I tricycle the combined pill (Loestrin 20) to level out my hormones to prevent the migraines I always got at ovulation and mentruation
Good Hydration
Avoid Bright Lights
No Exertion
Regular Meals
Reduced Travelling
Stress Management
Eye test and new glasses

Things I'm planning on trying or considering trying:

A different preventative medication such as Amitriptyline or Topamax
Regular gentle exercise
Professional massage
TENS unit
An eye patch (see my previous post as to why this might help me)

If you're not a fellow chronic migraine sufferer then it is possible that you may know something which could help me,  but chances are I already know about it and there's a reason why I haven't tried it and I'm not planning on trying it.  You're free to suggest it but please don't be offended if I simply direct you to this post or I don't try it for reasons I don't explain to you.
If you ARE a fellow chronic migraine sufferer and there's something you think I'm missing, please do tell me!

Monday, 22 April 2013

How My Migraines Feel

So what is it like to have a migraine?  This is something which those who have never experienced a migraine imagine with very varied results, the classic thoughts being "it's a just a headache" though others who have known someone who suffers from them are more empathetic.  The ironic thing for me is that I've always suffered from headaches throughout my life and as such I always greatly pitied those who got migraines though in those days I thought they only lasted a few hours.

There are many different elements to migraines which some suffer from and some don't.  I don't, for example, have aura with my migraine (that's the weird vision stuff that can happen before a migraine) though I have experienced aura without migraine a few times  I don't suffer from the extreme dizziness that some other sufferers get and in many respects a lot of my symptoms are very mild in comparison to other sufferers which actually makes me feel lucky despite being a chronic sufferer.

I can't tell you how migraine feels to anyone else, but let me explain how migraine feels to me if it is untreated or if the treatment fails (which happens 10-20% of the time for me).  It will usually last for 3 days in this case, so let me tell you about those three days.  No description can really do it justice but this is my best attempt.

The Beginning

My attacks used to almost always start during the night whilst I slept but recently they've almost always started during the day.  It will start as a headache which quickly grows to a bad headache.  I'm going to use this excellent Comparative Pain Scale to try and give you an idea on how this feels.  A bad headache for me is about a number 4 on this pain scale, which is described as 'Distressing' and elaborated as "Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that."

I regularly have headaches, in fact it's an unusual day if I don't have a headache of some sort and these vary from a 1 to a 4 on this pain scale.  The start of a migraine headache feels different though.   It's always on only one side of my head and it also have a slightly numbing quality to it.  This is my warning sign, the only way I know that Migraine Is Coming .

I have to identify the window during this time, when the headache has progressed past the point of no return into migraine territory but before it goes too far to take my attack meds in - too early and they won't do anything, too late and, you guessed it, they won't do anything.  Sometimes they won't do anything anyway.

The Peak

This headache will continue to grow and grow, increasing in pain, intensity and depth over about 4-6 hours until the pain is all-consuming.
To me, this feels like my brain is trying to burst out of my skull on one side of my head, usually my right side, and the only thing which seems to offer any relief is pressing hard against my eye so that I feel like if I just dug in and scooped out my eye that might let the pain out somehow.  I don't recommend trying this though!
I would rate this as an 8 on the Comparative Pain Scale I referenced above, which is described as 'Utterly Horrible' and elaborated as "Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache."

I don't know if the inability to think clearly is a migraine effect or a by-product of the pain, but simple things take me a while to process which is frustrating and makes me feel like I'm not me anymore which is one of the scariest things in my opinion.  My speech becomes slurred, or so I'm told, I should probably ask my husband to record me so I can hear what I sound like at this stage.  My balance is so poor that I'm liable to fall over, or more often fall into walls when I try and move about.

It really does seem like the only thing in the world is pain and that it will never end, I'm not sure how to describe that to someone who hasn't experienced it.  My head is swimming so I can't think about anything other than the pain, I can't communicate very well as I can't think enough to work out the right words, simple words, I have to be told to do things which seem obvious like sitting down.

When the migraine has come on overnight, I wake from my sleep slowly, usually at some time in the middle of the night, with the pain rousing me from my sleep until I'm suddenly conscious but in utterly agonising pain and it takes me a while to think through the pain to realise I need to take my meds.  I keep my meds and a bottle of water right next to the bed at all time because if they're not there when this happens, my brain won't function well enough for me to stumble/crawl off to wherever they are to take them.

About 10% of the time I experience nausea at this point in the migraine as well.  Sometimes this is just a feeling on constant nausea, sometimes in involves very sudden vomiting, which also makes taking medication problematic so I'm very thankful I don't have this with every migraine but there are plenty of people who do.

The Main Body of the Migraine

After 4-6 hours this level of intensity of the pain finally abates and it lowers to a 7 on the Comparative Pain Scale which is described as 'Very Intense' and elaborated as "Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache."  The pain will stay at this level for the next 2 days, day and night, unrelentingly.

In addition to this, there are other things to make the whole experience worse. Like most migraine sufferers, I get photosensitivity.  Mine isn't as extreme as many people's but daylight is torture and a bright room is an absolute nightmare.  I need to be in a dim room and screens are usually ok as long as the brightness is turned right down.  Loud noises send a zap of pain through my head like a bolt of lightning.  I think a less well known one but a bad one is the pain of movement, especially moving the head up and down - nodding and shaking the head causes a huge surge of pain, as does simply standing up.  It feels like someone just stuck a knife in your head, as though the migraine pain wasn't enough already.

I find it very difficult to eat throughout the whole 3 days of the migraine, and it's impossible to cook.  My husband has to pretty much force me to eat as he knows it will only be worse if my blood sugars drop and drop.
The fatigue is not to be underestimated either.  This isn't just a lack of wanting to move because any movement is a knife in my head, it's absolute exhaustion through all of my body, where it feels like I've climbed a mountain if I've climbed the stairs to the toilet.

By the third day, the pain is finally a little less debilitating.  I would classify this as a 6 on the Comparative Pain Scale which is described as 'Intense' and elaborated as "Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain."  By the evening of the third day, if that is indeed the last day of the migraine then the pain usually lessens further to approximately a 4 and I start to have a little energy again and a little of my appetite back.

After the Migraine

The fourth day is then the migraine hangover which feels just like it sounds, like a bad hangover.  I have the same grogginess I feel when I'm hungover, I have the same dry mouth and unquenchable thirst and the same pounding headache and sometimes I also have the same nausea.  I am, however, usually pretty happy on a migraine hangover day, as it is joyous in comparison to the migraine and because I know the migraine is over.

On a typical migraine, even if I take my meds at the right time and they work, the pain will still reach the level described above (level 8) before they take effect.  When they do take effect then I'm not back to 'normal'. Instead I am quite spacy until I've managed a deep sleep (just one cycle is enough) and I can feel the migraine lurking there.  This is particularly difficult to try to describe but I can feel its presence in my head on the same side the migraine pain was on, for the same length of time the migraine would have lasted if it had been allowed to run its course (usually 3 days).  During this time, any extra exertion such as seeing friends, doing a Tesco trip, even doing a couple of big tea rounds in the office, can re-trigger the migraine.  If it re-triggers at any time during these 3 days, the migraine starts from the beginning of the 3 day cycle and the meds will not abort it.

I don't expect anyone who doesn't experience migraines to understand how this feels.  Before my migraines started I pitied migraine sufferers but I have no understanding of what pain on that level for 3 days straight is like.  I also had no idea what that was like on a repeated cycle, happening over and over and over again with very short intervals in between, and I wouldn't wish it on anyone.  I hope perhaps, that those who know me will be able to better understand what I'm going through when I say I'm down with a migraine after reading this.  And yes, I did cry writing this because it's been so very, very hard to live through.

Monday, 15 April 2013

My Migraine History

As I sit up late at night, much later than I should be be, but unable to sleep because of the headache I have at the moment (migraine hangover), I thought I'd post a little on the history of my migraines.

They started about three and a half years ago now, shortly after I moved to Norwich. The first one was terrifying, I thought maybe I had a brain tumour or something.  I was at work in Norwich, staying later than usual because I was performing an update to the system which had to be done at that time as it had been pre-arranged.  I'd had a headache building through the afternoon but I had no idea what it was building up to.  By the time I begged my (then) boyfriend (now husband) to come and pick me up from the office I was in blinding agony. It felt like my head was splitting in two and I wanted to gouge out my eye as that's what it felt it would take to relieve the pain (it wouldn't have of course, which is why I didn't!). I think he realised how bad it was when the tea he had brought me in my travel mug to make me feel better just made me want to hurl and I tipped it away. That first migraine lasted for the rest of that day but was thankfully gone by the next day.

I had no idea what had caused such a horrific and incredibly scary headache but as it had gone away, I moved on.
About a month later it happened again, no nausea this time which is what made me assume it wasn't a migraine as I thought all migraines had nausea.
About a month later it happened again, and it was obvious then that it was becoming a trend.  They were usually happening immediately after something big & stressful, like the Saturday night implementation of a project I'd been working on for months.

I believe that a collection of factors triggered this condition in me. A few months earlier I had gone through an extremely stressful breakup, I then moved to Norwich into a house far too small for both mine and my husband's things and it was a place I was never happy to be in. The most important factor though I believe, was that when I moved I kept the same job to work from the Norwich office instead of the London one but on the proviso that two days a week I work from London, to be in my desk at the same times I would be normally in Norwich. This was meant to be the same two days each week but it rarely was, changing frequently and unpredictably. It meant that I was getting up about 3 hours earlier two days a week and travelling a two hour train journey there and a two hour train journey back. I believe this was the thing which was the final straw for me and triggered my migraines. Travelling has consistently been a major trigger for me.

I've always hated going to the doctors so my husband had to practically drag me there.  The first doctor I saw suspected migraines and gave me Migraleve, he gave me the type with anti-nausea stuff in it, despite the fact I'd only had the nausea once, and because it contained that I could take it so infrequently that it was useless and barely touched it anyway, so I started self-medicating with paracetamol & codeine - that didn't stop the pain but it did lessen it a bit.

As time progressed, so did the durations of my migraines. They eventually settled on being almost always 3 days long and I had to start missing work with them.

Almost a year after my first migraine and about 6 months of keeping on visiting my doctor's surgery, I was finally prescribed a triptan and something to take every day to try to prevent the attacks from happening.  This was propranalol, a beta blocker used for heart attack patients and also commonly for people who need to calm their nerves like stage performers and snipers!  I later learnt that other than triptans pretty much all the treatments and prevents for migraines have been developed for other things and it's a happy coincidence that they help with migraines which makes me wonder how many things could help if investment was put in, but that's for another post.

Anyway, my doctor who prescribed the triptan to me (sumatriptan), triptans being a specialised type of medication to treat a migraine attack, told me that the medication was extremely expensive so he would prescribe me only 6. He never explicitly said "so only take them if you really really have to" but that's the impression I got and I felt like I was wasting NHS money every time I took one for it to only help a bit. They're actually not that expensive and I certainly shouldn't have felt bad about it.

A year into my migraines and I was trying everything anyone suggested to try and stop them. I was having to take more and more time out of work and they were sending me to Occupational Health which scared me and made me more stressed. Whenever I returned to work, always with the dreaded migraine hangover (imagine a really horrible hangover and how bad that feels, with the pounding head, the unquenchable thirst and sometimes nausea, that's the day after a migraine has finished for me and so many other sufferers), I was expected to pick up from where things were immediately and be totally on the ball and working triply hard to make up for the time I had been off. That was impossible of course, and furthered my stress.

Occupational Health recommended a trial of reducing my travel to London to two days a month instead of two days a week and my migraines decreased in frequency dramatically. When the three month trial was up, now 18 months since my migraines first started, they reverted me back to the previous two days a week.

It was shortly after that me and my husband announced that we were expediting our plans to move to York in an attempt to help me find the peace I was needing to help me. I started a new role as a Project Manager on a 1 year FTC when I moved, but working for the same people in London though thankfully then without the travel to London. The GP I registered with was so much more helpful than any of the ones I saw at the surgery in Norwich and I was thrilled.  We had even found a house to buy almost immediately!

Things were just starting to look better when spots stated appearing in my vision in my right eye. I was referred to the hospital and told I had something called PIC.  I had lesions on the back of my eye corresponding to the spots in my vision. They told me they could leave me untreated and it would fix itself but one of them was too close to the centre of my vision and I had to be treated. I won't say what happened but I consider it to be a trauma on my eye and it was horrific to go through. The degraded vision, the trauma and the stress all went to increase my migraine frequency and I found myself in a near endless cycle of migraines back-to-back, wiping out most of my August and September of that year, now two years since my condition started.

My GP had already referred me to the York Hospital Headache Clinic by this time and by the end of September he signed me off work for 3 weeks until my appointment there. In those three weeks I then had only one migraine, the stress of not trying to work through the lesser headaches between the worse ones finally being lifted.

I learnt at the Headache Clinic that I had fallen foul of Medication Overuse Headache, essentially the drugs I was using to treat my migraines was causing more migraines. Since that visit I have been strictly limited to only 6 treatment days a month which has meant some very painful completely untreated migraines. I started a plan with them to try out various different triptans, a new medication plan of attack when a migraine occurred, and understanding of triggers and thresholds. I learnt a lot and I continued to do so with each subsequent appointment too.
I was doing better for a few months after my trip to the Headache Clinic but in the January. Spots appeared in my vision again. This exacerbated the migraines again and this time it wasn't PIC as there were no lesions. 15 months later as I write this they still don't know what it is and I still have the spots, currently in a blanket of small spots across my right eye vision with a large section wiping out almost all my vision to the right of centre.

I was experimented on, I was put on steroids, all in the run up to my wedding in the June.  Worse than all this though, was that my work started putting me through disciplinary procedures. The outcome of each meeting was that I was already doing all I could and I should keep doing all that and here's a formal warning. My migraines, of course, became terrible again.

I was seeing a clinical psychologist and an acupuncturist both of which I was referred to by the Headache clinic during this time. Neither of them particularly helped, the psychologist said I needed to leave my job (which I knew already) and acupuncture sadly didn't help me at all.

By May I was signed off work for 3 weeks again as I had barely seen a day of April (with only 6 treatment days allowed in a month!) returning to work just before my wedding. It was at that time I started on Naratriptan, the right triptan for me! Finally one that did what it was meant to and aborted the migraine if I caught it early enough. The downside being that I'm left a bit spacey and prone to sudden tiredness but that's incredible compared to a three day migraine!!
By the time I returned from honeymoon I was told I didn't need to work the last 2 weeks of my contract and was given garden leave until the end of June.

Once I wasn't working, although job hunting and being unemployed was stressful, it was such a massive weight off my shoulders to no longer be working where I had been and for who I had been that my migraine frequency improved to only one migraine every two weeks. This was life-changingly better, especially with a treatment which would abort the migraine most times.

I was discharged from the Headache Clinic at my following visit in the October which at the time made me felt like I was almost a normal person again but in hindsight I shouldn't have let them do.

I started my new job at the beginning of January. The most stressful day in my new job is less stressful than a normal day in my old job, and the commute is a nice drive in York during which I listen to an audiobook making my commute something to look forward to and enjoy. Despite this, my migraines have increased in frequency and I've had to miss a few days of work when the migraine either hasn't been aborted or has been re-triggered.  My GP has re-referred me to the Headache Clinic and I'm hoping they'll have more ideas for me to try and maybe the future will look brighter.

My Everyday Life with Migraines

So, what a lot of people don't realise is how much of an impact migraines have on the life of a chronic migraine sufferer.  With migraines being episodic then you'd be forgiven for thinking that my life is only affected by them when I have an attack, which is very frequently, but it's so much more than that.

To explain, let me tell you about 'triggers' and 'thresholds'.  When most people think about what can cause a migraine attack, they think about 'triggers' like "my mum always gets a migraine whenever she has some cheese" (usually followed by something like "so you shouldn't eat cheese and you'll probably be ok then") which massively over simplifies the conditions it takes to cause a migraine (as well as the fact that it's different for every single sufferer).

As humans are complex beings, it's a lot more complex than that.  It's usually a combination of factors which leads to a migraine and that's where thresholds come in.  Infrequent sufferers have a high threshold which must be surpassed before they are hit by a migraine.  Chronic sufferers like myself have a much lower threshold to start with.  Then there are all the other factors which lower the threshold - those things that people think about as 'triggers', they're threshold lowerers, so a stressful day will lower the threshold, a late night will lower the threshold, in some people's cases certain foods will lower the threshold, for the majority of women the threshold is lowered hormonally twice a month at ovulation and menstruation, and many more reasons.

As a chronic migraine sufferer, my life revolves around trying to keep my threshold as high as possible.
  • As travelling is a huge threshold lowerer for me and most of my friends live elsewhere in the country, then I rarely get to see them anymore.  If I have plans for a weekend then I can't be doing anything the weekends either side of that and ideally I take time off work either side like I have done this weekend for a simple day trip to London on Saturday.
  • Specific food types don't have a big impact on my threshold (though I have the common offenders only in moderation) but my hydration level has a huge one, so every minute of every day I have to be thinking about my hydration level.  If I let it dip a bit then that lowers my threshold significantly.  This also means that it's only on very rare occasions that I can have an alcoholic drink, about 3 times a year I reckon and only ever one drink on those occasions, except on my wedding day when I had two over the course of the whole day.  I've discovered an alcohol-free version of a beer I really love which means I don't miss the taste as much but I drink those sparingly too as when I'd have 2-3 of them I've had a migraine so I think there may be something more to beer as well.
  • Physical exertion lowers my thresholds which I've found really hard to learn to manage.  At the time you feel fine, you want to run around and enjoy whatever it is you're doing and you feel great so why shouldn't you.  It's later on when the migraine hits though so anything physical I have to weigh up beforehand where I think my threshold is at the moment based on all the other factors, which is very difficult to judge sadly.  Physical exertion you might think of solely as running around or doing something strenuous but it also includes the simple act of getting up and going to work, this simple act significantly lowers my threshold and there's very little I can do about that one.
  • Although I don't have much of a problem with specific foodstuffs, blood sugar level in general is something I have to be constantly aware of.  The advice I've had from my specialist is to eat little and often but that's something which is very difficult for me to achieve for a couple of reasons, one being that I'm half of a pair, we have our meals together when we're not at work so if I'm cooking meals for the two of us, little and often is very difficult to achieve then.  The second one is that I have only a small appetite which means if I have something small and snack-like (like a graze box for example, or a biscuit) then I literally can't eat anything for about 6-8 hours.  I never used to eat breakfast which contributed to my migraines so making sure I always eat breakfast now is important, a missed meal is a disaster and I have to be conscious to not let myself feel hungry, if I feel hungry then my blood sugar has already dropped.  This, together with the hydration, meals I am having to think about what I'm eating and drinking all day, every day, which can be exhausting in itself.
  • Regular commitments are a real struggle for me.  I've been in choirs all my life and it's a part of who I am and something which is really important to me.  I was in a great choir here in York called Soon Amore but I had to leave the choir a couple of months ago and I won't be able to re-join unless my migraines significally improve as I was missing too many rehearsals (I was making it to about one in four of them).  Anything which relies on me regularly being somewhere or doing something is extremely difficult as I have to cancel so many times.  The act of having a regular commitment in itself is stressful though, see the last point on the list.
  • When people are happy because it's a 'lovely day' outside, I sigh with sadness as that means a day of hiding indoors away from the sunshine.  Bright sunlight and especially sunshine when you're on the move and it catches between trees so it flashes over and over again lowers my thresholds so I have to be careful to have my prescription sunglasses with me all the time but that isn't always enough to help.
  • My vision is general is a problem.  I've had an ongoing eye condition for almost 2 years which causes spots in the vision of my right eye and intermittent flashing as well.  This means my left eye is having to work extra hard and my brain has to keep working out that the spots aren't meant to be there and keeps on filling in the gaps (based on what the left eye sees), so the worse my vision gets the more of a strain it is and the more migraines I get.  I'm considering trying an eyepatch to try and mitigate this as a factor but it seems a little extreme and would give me problems with depth perception when I'm driving.
  • Hormones are a problem for every woman as our thresholds are lowered at times of ovulation and menstruation  i.e. every two weeks.  I was getting migraines every two weeks like clockwork but I'm now tricycling the combined pill to keep my hormones level to mitigate these but being on the pill for a long time carries its own problems and risks, including causing migraines.
  • A regular sleep pattern is very important to maintain for migraine sufferers - going to bed at the same time each night and getting up at the same time each morning is very important.  A lie in at the weekend of just half an hour can be enough to cause a migraine.  This is why my alarm goes off at the same time, 7 days a week.  The problem I have is that I suffer with insomnia, which is even worse when I have a headache or a migraine, so for me insomnia is a cause of my migraines.  Incidentally, I believe it was this area which was a major factor in causing my migraines to start (see my post on My Migraine History)
  • The last threshold I have to constantly manage and be mindful of, and the one which has the single biggest impact for me, is stress.  It's difficult to explain this one; when people think of stress they think of a really stressful day at work, or maybe exams when they were at school, perhaps they think of trying to move house, starting a new job or taking their driving test.  Those things are stressful but they tend to be occasional stresses, those things would without question cause a migraine for me.  There are much lesser stresses though, the every day ones, the utterly unavoidable ones.  Just being in a work environment is a stress, just seeing people, any people for anything, is a stress.  Going to the supermarket is a big stress.  All of these things lower my threshold every single day.  Let me say that again as I don't think it's easy to comprehend how much of an impact that is on my life, the mere act of making food, of shopping, of going somewhere else, of even seeing a single person, lowers my threshold.  This means that I have to spend a lot of my time at home just resting, not even seeing my husband, I can only see friends on one evening a week and that's a strain.  I have to constantly try and monitor what my stress level is currently at, even the most minute of levels, and do all I can to mitigate that becoming a migraine. This alone takes over my life and stops my husband from being able to enjoy life as he would like to with me.
On top of these things dictating how I can live my life, or rather how little I can live my life, there are the migraines themselves.  When they happen, if I'm lucky then I catch it early on, I take my attack meds, sleep, rest and it aborts the migraine.  If I'm not lucky then either it doesn't abort the migraine or it re-triggers.  My migraines usually last for 3 days and when I am lucky enough to manage to abort a migraine, my brain seems to know it's still meant to be experiencing the migraine and I'm very fragile for the 3 days I would have had the migraine for, with the smallest of things being all it takes to re-trigger that migraine and when that does happen it starts from the beginning of the 3 days and it's impossible to abort it.  During these times I manage to go to work though I speak and move as little as possible whilst I'm there and I have to effectively hibernate whilst I'm at home, unable to cook etc.  When my migraines occur currently on average about once a week, this is a large proportion of my time.

So there you have it, that's how I live my life as a chronic migraine sufferer and what a huge impact they have on my life even when I don't have a migraine at that moment.  This is one of the biggest things which people don't understand about chronic migraine sufferers or any similar episodic illness, that your life is drastically changed and impacted all the time you're not having an attack as well. And if any of that made you want to cry, spare a thought for the fact that crying is a threshold lowerer for me but sometimes I just have to.

I'd be interested in people leaving comments please, either to tell me if this is in line with what they were expecting my life to be like now or as a sufferer themselves if they have found their lives so impacted or even more?

Tuesday, 9 April 2013

New Blog!

So this is my new blog as a place to talk about my migraines.  I'll be talking about how they affect me, how they affect the people around me, what I'm doing to try to improve them, my journey through treatments with my doctors, things I learn about them and anything else relating to them that I want to share.

From discovering other people's blogs recently, I've shared their words with friends and found my friends have gained a greater understanding of what I'm going through so I thought a place to put down my own thoughts would be a good idea.

I'll be recommending other blogs which I've found interesting, helpful or insightful so if you're interested in more beyond my blog then you'll know where to go.

For now, I'm going to spend some time thinking about what I want to talk about first, and as I'm currently on a migraine hangover then now probably isn't the perfect time as I don't tend to think all the straight through pain.

In the meantime, please bookmark me (or RSS or whatever the cool kids are doing these days) and comments are always appreciated :)