Last week I wrote about the horrific migraine I had and as I stated when I wrote it just because the acute phase is over it doesn't mean that you are 100% back to normal. I spent the following 7 days with a headache varying in severity. It took until Monday ( 25th May ) for me to finally be free from a headache and any other lingering post migraine symptoms.
I did manage to write a letter to my gp surgery on the Wednesday as I said I would in my blog post and that bore fruit. I have now been prescribed sumatriptan . The gp contacted me via a text message which was weird as I have never had that happen before and contained within the message was a link toThe Exeter Headache Clinic protocol . I have included the link just in case anyone is interested as I found it very comprehensive and have taken onboard all the suggestions contained within it.
I printed out the the protocol as I am useless reading off screens ( unless it is blog posts but they have to be broken up with frequent paragraphs, long posts with no breaks are an instant turn off for me as I just feel overwhelmed). I then made a list for my husband to get the OTC ( over the counter ) medications from the pharmacy at his place of work. I also asked him as I have a history of projectile vomiting soluble aspirin / paracetamol etc to ask the pharmacist about paracetamol suppositories. I did explain in my very long letter to my gp that projectile vomiting is a HUGE problem along with nausea when I get a migraine but that seems to have been glossed over. He was quoted the price of £62.50 for not very many. I'm afraid I simply don't have £62.50 for medications, especially when I was already having to cover the cost of the suggested medications soluble paracetamol, aspirin and buccastem, with the supplements that I was also being asked to try to see if these also helped or reduced the amount of migraines I have been having. I have had to buy Magnesium ( taken very carefully to begin with due to the possibility of undiagnosed Myasthenia Gravis ), Co enzyme Q10 and Riboflavin ( Vitamin B2). I have to take these without fail for the next 8 weeks to see if they make any difference to the severity of my migraines or frequency. All in all I have had to spend over £50 on supplements and medications - thankfully my sumatriptan didn't cost me anything as I get free prescriptions, had I have had to pay for it you could basically add on another £10 making it as near as dam it 60 quid in total.
That really pissed me off....in a time when many people have either been made redundant / furloughed on 80% pay or are on Universal Credit for the first time in their lives due to Covid-19, my gp's surgery was so out of touch that they didn't bother contacting me to ask if I needed them to write me a prescription for the OTC medication so that I didn't have to bear the cost. Thankfully neither my husband or my income has been hit due to the current global pandemic but we know that we are in the minority not the majority. It really grinds my gears that many other people who have been told to follow this protocol simply wouldn't have been able to afford it or would have had to choose between food or medical treatment and surely that is very, very wrong in the 6th or 7th richest country in the world? I know had I been in a position where I couldn't afford to buy the OTC medication ( let alone the supplements) I would have been far too embarrassed to admit this to my doctor or anyone. Poverty seems to be a thing that is really looked down on in the UK and many simply feel that those in poverty are somehow at fault for it when everyone ( except the very wealthy ) are one illness or accident away from finding their lives changed forever.
The practical side of me kicked in, I know what a state I am in when a migraine happens. I am incredibly unlucky that my migraines 99.9999% of the time happen at night and I wake up with them either just starting or already raging. When I first started getting migraines at around the age of 8 years old, I used to get the classic aura, zig zag lines either black and white or primary colours or it could be that I would get tunnel vision or parts of my vision would disappear, usual in the central field of vision. It has been a few years since I have had that kind of migraine. For at least the last 4 years they have come on at night and when they do I am pretty much incapacitated immediately. So I decided that I would make myself a migraine grab bag. This bag or large zipped pouch really, would contain the soluble paracetamol, aspirin, sumatriptan and buccastem along with a bottle of water and a plastic pint glass. Just so I could "grab" that bag and know that I had everything in one place and not have to worry about trying to navigate stairs / call Mr Myasthenia Kid for help. Time is of the essence for me once an attack is underway as nausea sets in very quickly so there is a very short time frame for me to administer medications before it gets to the point where anything taken orally will be projectile vomited.
The bag doesn't look very big in the photo but it is at least 14 inches wide and 12 inches tall. I used this fabric as a) I absolutely love it and b) it is a totally different fabric style to the other zipped pouches I have in my room. Plus if I say to Mr Myasthenia Kid "the one with hippo's on" he won't need his glasses to identify it! It still has plenty of room inside it even though it has a bottle of water , a couple of plastic pint glasses and the medications within it.
I am still terrified at the prospect of the next migraine but I feel like at least I am putting things in place to help / get me through. I am now keeping a food diary to see if there are any obvious triggers ( when I was a kid there was coca cola, Halls menthol cough sweets, Scampi Fries and orange juice although none of these seem to have the triggering effect now - although I still can't stand anything menthol). I have also bought myself a Migraine tracker book, which details when the migraine starts, finishes, symptoms possible trackers, things that helped etc. Which I thought would be a good thing to keep if the sumatriptan doesn't help and I end up having to see a Migraine specialist. I couldn't resist this one when I saw it
I am feeling prepared, still frightened but prepared. We shall just have to see what happens....
It seems to be one thing after another at the moment and if you are bored reading it you can imagine how tedious I am finding living with it? The week after my unhappy hump day went reasonably well. I only needed two days on the diazepam and then it was taken as and when needed. I was bobbing along quite nicely until 4.20am Tuesday morning when I woke up with that familiar sinus pain like I had been smacked with a shovel and a distinct lack of balance that let me know Tuesday was just going to be awful. I had a migraine and this one was going to be an utter bastard.
I fished out my neck collar, took what pain medications I could and propped myself up on my pillows hoping that I had done enough to limit the attack to a few hours. However it wouldn't have mattered what I had done yesterday this migraine was going to rate number 2 on the worst migraines ever - number one having taken place in either February or March and left me with amnesia. I didn't drink or eat for well over 16 hours because even the thought of drinking made me want to puke and although my stomach was burning, I just couldn't eat as I again felt so nauseous at the prospect of eating that I just had to ignore the rumbling stomach and hope that I wasn't sick from being hungry.
I don't remember a lot of yesterday, I remember at around 9am shouting help because Jay hadn't twigged that anything was wrong and hadn't bothered to check on me . He thought I was having a long over due lie on. I couldn't roll over to grab my phone and I couldn't think what to shout to get his attention. I was also having diarrhoea at this point (not in bed thank goodness but had resulted in 6 trips to the bathroom where I had stumbled clinging onto the safety rail) which was really fun when any smell good or bad was making me wretch and of course my shit smelt of roses and rainbows LOL! My head also felt like an axe was attempting to cleave it in half every time my head left the pillow. Help indeed was needed, but what could be provided was limited. Hot water bottles and a basin were brought to me. Thankfully I wasn't sick but Oh how I wanted to be.
Without being melodramatic the pain was so bad yesterday there were points I wanted to go to sleep and just not wake up. I have been through the agony of a CSF leak and although that was awful there was always some relief at some point. There was nothing yesterday the pain was just unrelenting, the light was too bright but my face was too sore to wear sunglasses. I was sweating and then I was freezing cold. I wondered if I had contracted meningitis. I did actually consider calling 999 for an ambulance but I couldn't bear the prospect of being poked and prodded, expected to answer questions and be in a noisy environment. You know you are poorly when you don't want to move and you don't care that you should be calling for help.
At some point during the morning I heard them talking about oxygen on the radio ( I'm very lucky that I don't need complete silence during an attack just a darkened room) and I remembered oxygen always helps me when I have a migraine. Another plaintive Help was shouted and Jay sprang into action set up my oxygen machine and got me hooked up to it. He also got me a bottle of water because the orange squash he had given me was turning my stomach and after each mouthful I wanted to bring it back up and more. The oxygen did help it lowered the pain level to an 8/10 instead of the 10/10 it had been since 4.20am
I spent the majority of the day in bed. At 1pm I got up because my back was killing me. That was a dreadful mistake after an hour I went back to bed and straight to sleep despite the pain. I got up again at 4pm and managed to have a drink, then I was so thirsty I couldn't stop drinking and then I was ravenous with the post migraine munchies. I could have eaten my body weight in whatever food you brought me. I was despite sleeping all day fucking shattered. I went back to bed again at 6pm tried watching some tv but having jolted awake three times in 30 minutes gave up and slept solidly until 1am.....and was then awake for the rest of the night. I managed to get an hour of sleep between 7-8am this morning.
Today is brought to you by the letter C - for Coffee. I feel like I am floating I am so tired. I have managed to sort myself out and have a shower with Jays help. Honestly I was honking after sweating so much yesterday. My autonomic nervous system was going mental. I feel like I have taken too many pain killers as my head is floating and my face feels like it is sticking out 3 inches further than it is. I am going to put a letter together for my gp telling them I can't go on like this. Just thinking about the fact I will have yet another migraine next month is making me cry. I have been tracking them on my phone and they happen at least once a month and always between the 18th -22nd of the month. It isn't fair on me for these to continue to happen and it isn't fair on Jay as he can't take one day off a month to look after me as I am so ill I can't do anything for myself.
People also seem to be under the impression that you have the migraine and then like magic you are back to normal again, in reality it can take me several days after a severe attack to feel like I am functioning anywhere near normal, so it's not just one day a month I am losing but 3 or 4 depending on the severity.
From what I have briefly read up during the early hours of this morning around 40% of women find their migraines worsen during peri-menopause and menopause. Even in the absence of menses there is still a very slight hormone fluctuation which can be enough to trigger a migraine. Which would be my case. I stopped my contraceptive pill in December as I wanted to see if the menopause fairy had joined me and it has now been over 5 months and there has been no period. Yet my migraines will always occur since stopping the pill between the 18th - 22nd of the month without fail. Occasionally like this month I will get two migraines, I had one last Tuesday, so exactly a week apart. I am at the end of my tether with it. All I want to do is cry but whats the point? It won't change anything. I need specialist input now so I am going to write to my gp as due to Covid-19 I don't want to go to the surgery unless I have to and ask if they ever did contact neurology like the doctor said she would and if they had suggested some medication as continuing on like this isn't an option. I'm at the end of my tether with it.
Until I joined Instagram I had no clue what Hump Day was, I quickly worked out that Happy Hump day just meant happy Wednesday. Hump day meaning from what I have surmised, that once you get over this hump it will soon be the weekend. It isn't a happy hump day here, I can't believe it is only Wednesday as so far I have endured vertigo, a migraine and now my back is buggered spectacularly and I am waiting on a phone call from the doctor where I will have to beg for diazepam so that I can move again this week!
When you have multiple health issues that like to spring up without warning a week can seem like a very long time. I always try to push through symptoms whenever I can because if I didn't much of my time would be spent in bed. However when it comes to my back being in spasm I am severely limited, I can't walk because the action of walking sets the spasm off and I cant move my arms as that also sets the spasm off. I rang the doctors surgery gasping and crying, I am sure the receptionist thought I was being melodramatic! But I really wasn't the pain takes my breath away and makes me make horrendous noises as my back contorts and twists itself into all sorts weird shapes. I can only describe it as like wearing a remote controlled whalebone corset. You can be fine one minute and the next the sadistic twat with the controller has randomly made a group of muscles spasm and you can't move. The pain is so immediate and acute that it takes your breath away. The problem is that you never know what movement your back will find unacceptable until it does!
So I am typing this - I gave up with speech to text when it tried to translate my whimpers into text, whilst sipping a gin ( small ) whilst waiting for the doctor to ring ( it's only small because I don't want to be shit faced if and when they ring! as that's not classy at all). Thankfully the doctor has just rung and agreed that I need diazepam. Thank goodness. Although due to Jays schedule he won't be home until after 10pm.
I forgot to mention that Jay returned to work on Monday after being home for 7 weeks due to the medications he is on for psoriasis and asthma. His mental health took a nose dive and having been in a really awful place many years ago where he ended up being off work for 12 weeks and it took a good 5 years to get him on the correct medications so that he no longer had massive dips in his mood. He didn't want to end up in that place again so talked to his HR manager about returning to work. Now they have the social distancing measures in place it is much safer than it was before he was put on the 12 week leave. So he returned on Monday which left Dembe and I scrambling to sort ourselves out in to a new routine after a 7 week hiatus.
I knew on Sunday that I was feeling stressed at Jays imminent return to work - he decided on the Friday ( out of the blue and with no discussion although I was aware he wasn't right mentally ) and returned on the Monday, as I was really struggling to relax and kept getting funny heart beats, which happens when I am stressed. I tried my hardest to just let it go but it didn't work. I was also suffering with vertigo, intermittently during the day, so that left me feeling pretty exhausted.
I was on edge all day Monday, although when he came home on his lunch break and I could see how happy I was, I relaxed. So I was really surprised late Monday evening when I started to get intermittent zigzag lines in the corner of my eye. As there was no headache within an hour I put it down to a visual migraine but at 5am the following morning I woke up with the feeling someone was trying to insert an ice-pick in my eye. It is clear that all the health issues that have popped up so far this week have been a result of stress.
Then last night after having an awful day with a migraine that just wouldn't shift, it lasted around 16 hours, I woke up 2 hours after going to sleep with awful muscle spasms in my right leg that had me crying out, the left leg was sore but the right leg had me squealing. Also the toes on my right foot were pulling back towards my shin. I hobbled downstairs and pulled a freezer block ( a cooler pack I think they are called in the USA ) and started massaging my leg with it. It helped but didn't get rid of it completely. As soon as the muscles relaxed they they just went into another spasm. It was so hard to walk. I ended up sleeping with the ice pack placed onto the back of my leg. I have no idea what caused that but I haven't had that happen in years - probably as long ago as me being a teenager and waking up with it after a night on the tiles and having a few too many sherbet's.
My calf has been aching all day and my feet have been doing their weird spasms all day. Then the icing on the cake was my back going into spasm this afternoon. It was so bad I immediately called the doctors. I can't believe how many health issues I have had this week and its only Wednesday. When I have weeks like this I often wonder what the hell the rest of the week will go.
I know this probably sounds strange when in reality I do have a lot of stuff going on but I get quite resentful when I can't do the stuff I want to do because my body has decided to let me down again. I hate the unpredictability of it and I hate that there is always something going on. When people ask me how I am I just lie and say fine because even I get bored with it and I learned years ago that most people really don't care they say it out of politeness when they ask how you are. I don't understand the point of asking a question that when you are asked you have to lie because that's the done thing. At least I have nothing planned this week.
Thank god it is hump day even if it's not a particularly happy one!
You wake up some mornings and you just aren't feeling the love for anything. Your force yourself to go through the motions but inside you feel like you are dying. It has been one of those days where everything is a real effort and things that would normally bring me joy aren't doing anything for me. I would prefer to sit and cry if I am honest. If Jay wasn't home I probably would. I try not to cry in front of him because he is so determined to fox things and well the way I feel today can't be fixed. I can only hope tomorrow I wake up with a renewed sense of enthusiasm.
When I had days like these previously I would panic that it was signalling the return of my depression. Over time I have learned that there are days that for no reason what- so -ever I will wake up and feel blue. It might also coincide with a pain flare which is what I am experiencing at the moment. The arthritis in the base of my thumbs is quite painful and during the night I must have hyper extended my lower spine, as I have a trapped nerve which is making it painful to walk, stand. Not that I can do either very much normally anyway. Because of that pain the rest of my back is trying to join in with back spasms. Making everything bloody painful which really doesn't help me on the mood front.
I know that I just have to make it through the day and hopefully tomorrow I will feel if not completely back to normal at least 80% there. It is a really weird mindset to be in as there is stuff I want to get done but when trying to complete various tasks I just run out of enthusiasm for them or my body / mind feels like it is trying to operate in a sea of treacle. Everything seems to take 10 times longer than it really should and it is frustrating because if I could just get my brain to engage and not wander I would be able to reach the goals I have set myself for the day.
I am kicking myself for leaving my blog post to the last possible moment to write as I am struggling to remain focused for long enough to string a sentence together. Earlier in the week I had a really good subject for the blog and had started composing it in my head. I have now forgotten it and that is winding me up too. If I am honest everything is annoying me today. If I could get up and leave myself I would. I hate being around myself when I am in this kind of mood. I am trying to choose my attitude but the overwhelming attitude for today is just pissed off. I am also for the first time in forever feeling very hormonal. Which is really just piling on the shit on an already shit day.
God I am even boring myself writing this, god help anyone who reads this. Lets hope by tomorrow this strange mood has done one for all our sakes. It is making me a right Mardy Mare!
For those of you who have no clue what Mardy means find the definition here
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