Like clockwork my migraine arrived within the predicted timescale, which is every month between 18th - 22nd. It started around midnight but as I was half asleep and I didn't twig, I just thought maybe it isn't as the pain wasn't intense it just felt like my sinuses had become a bit stuffy. However by 2am it was clear with every passing minute the pain was becoming more intense. I panicked a bit thinking I may have missed my window of opportunity with the sumatriptan.
I am so thankful that I put my migraine grab bag together, it sits on a shelf beside the bed with all my medications. Inside is a bottle of water, a pint sized plastic cup, soluble paracetamol, soluble aspirin, buccastem and sumatriptan. Having it all in one place means I don't have to fumble around trying to find various medications. It is all in one place, plonk the soluble tablets in the cup, tip in the water and then take them and the sumatriptan. Then shove the buccastem between my gum and my top lip. Turn off the bedroom light and go back to sleep.
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| Migraine grab bag |
Previously I would take the medication I had, then spend the next couple of hours trying in vain not to vomit them all back up. By 4.30am my migraine had subsided to just a headache and I was up chatting to Jay, having a cup of sugary tea as my sugar cravings and crazy hunger kick in straight after a migraine subsides and vomiting is no longer on the cards. I did go back to bed at around 5.30am and slept a few more hours.
I really didn't feel well all day, quite spaced out and didn't quite suss out that with all the drama of having a migraine I had forgotten to take my morning medications. I was quite lucky in the withdrawal symptoms weren't that bad I just felt unwell.
The protocol I have been following with the supplements says that you won't notice any change in your migraines ( severity or frequency ) until you have been taking them for a period of at least 3 months. So I was expecting to have a migraine this month. I had felt the warning side of a cranky bad mood ( to me it feels like bad PMT and feeling and getting angry with inanimate objects) the day before which seems to be the only warning sign that I get. It always seems to be the day before that this strange mood hits where nothing is right and everything is conspiring against me. I have identified this now with the last two migraines now that I am tracking them with more detail. There is no food trigger as my diet is pretty similar each day to the next. With it always being within that date range I would say that it was more than likely hormone based. Despite the fact since coming off the pill in December 2019 there has been zero sign of any menses.
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| My migraine tracker |
As usual my memory of Saturday is pretty hazy other than the fact I was ravenously hungry all day and extremely tired. I remember Sunday which is better than normal, as usually I lose a few days worth of detailed memory. Sunday I still didn't feel 100% and managed to pass out whilst trying to get on the floor due to feeling like I was going to faint. Resulting in a bruised bum and a Labrador sitting on me refusing to allow me to get up again until he believed it was safe for me to do so. The signal that it is safe, is Dembe going and getting me a toy from his toy box and wanting to play. Until then he will prevent me from even sitting up but sitting on my arm or throwing himself across my chest. This isn't something we have trained him to do but something he does instinctively and I am incredibly proud of our boy.
It is fantastic news that the sumatriptan is working so well for me and it has taken away some of the fear that had been surrounding the next migraine attack after the one in May been just so bloody awful. I am noticing with the magnesium supplement that I am sleeping an awful lot better, which is great as for the first time in years I am not spending hours awake in the middle of the night. So it is positive news on multiple fronts for a change.
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| My special boy |
After last weeks post Spondylolisthesis, my back improved massively. Just yesterday I was considering dropping taking the naproxen as it hadn't caused me any issues at all for a number of days, then I woke up this morning and bang the pain was back.
I have pushed through as much as I can today but I had to give up at 14.30 and take some diazepam. The muscles of my backside are really tight and sore. When they are like this it is a symptom of the Spondylolisthesis, it aches down the back of both my thighs and no position is comfortable. Standing feels like someone is kicking me in the arse, sitting makes my buttocks ache and I get severe pain in my coccyx. If I could lie down knowing that by doing so I wouldn't be woken up at 2am by my back throwing a tantrum I would. So at the moment my only relief is by having a hot water bottle applied to my back ( far too hot ) and regular changes in position which makes doing anything difficult because those changes need to be made every ten minutes or so.
If I knew why my back had kicked off so much today I would be happier, I didn't use my sewing or embroidery machines at all yesterday. We had a relatively lazy day but even in that we were moving around and I certainly wasn't static for hours at a time. Which I know does cause me issues, so I am at a loss. I have avoided all the things I am supposed to like lifting - can't do that anyway, staying static for too long. All I can think is that I have turned weirdly in my sleep and hyper-extended my spine and it is letting me know today that it didn't like it.
I have always found wherever possible distraction is the best possible thing to combat pain but some pain is just so strong that no amount of distraction can stop those nerve signals being acknowledged by your brain. That is why I like sewing / embroidery / crochet as it means I can distract myself most of the time but today it hasn't mattered what I have done those pain signals are just getting stronger and stronger. I am very glad that we now have a dog walker who takes Dembe out for an hour when Jay is on a late night as it means Dembe settles very quickly in the evening and I will be able to go to bed and attempt to get comfortable relatively early on tonight. Rather than Dembe needing mental stimulation for 90 minutes or so, to tire him out and get him to wind down for the day.
Much of the last few days has also been spent on high alert as from now until the 23rd (ish) I am on migraine watch. This week of the month is usually when it strikes. Yesterday ( Tuesday) I was convinced it was going to be today as I was starving hungry all day with nothing satisfying me. I am still trying to work out what the signals are that I am going to end up having a migraine but there is nothing I can say is 100% concrete that is a definite clue that it is going to happen. I have noticed mood changes the day before, hunger and sometimes the evening before my vision goes a bit weird. However it doesn't happen on each one, which means sometimes these things happen, I get frightened because they have been so bad and then nothing. Which is exactly what happened last night.
I am a few weeks into the Migraine Clinic protocol and they advise that you really need to have been doing it for around 3 months before you can say if it has had any effect on your migraines. You can find the protocol HERE. So it is too early to say at the moment, also I have been known to skip a months migraine and have it two weeks later so a cycle of 6 weeks rather than 4 weekly. That is the major issue I won't know when the next one is coming. I have worked out that dehydration is a trigger but it is a rare trigger as due to my excessive thirst I do tend to drink much more than the average person. The day in question when I did suffer a migraine it followed a day where I had been drinking alcohol from around 2pm in the afternoon (Cider at 4% so not the hard stuff). Because I didn't have any additional fluids I am pretty sure that is what triggered that one and I had to use my emergency meds. I was very grateful that I did have my grab bag made and everything in one place as it meant I could take the meds and get my head down.
I have been religiously taking my supplements and even managing to remember to take the midday dose of the one I have to take three times a day. A new alarm on my phone helps me remember!
As sitting is literally a massive pain in the butt and I am having to type this sitting down I am going to wrap this up now. Plus I took half a diazepam about an hour ago and that starts messing with concentration levels. Plus I want to tidy up a bit before Dembe gets back from his yomp on the common!
It's been a strange old week to put it mildly! The weeks seem to whizz by with very little happening in them. Some days I have to check my phone in the morning just to remember what day or even month we are in. How on earth is it June already when it feels like the lock-down only started a few weeks ago ( March 23rd!).
Last Thursday I ended up in agony with my back, it has been playing up on and off since around the 10th May. I have what is known as a Spondylolisthesis, which is where my L5 vertebrae is slipping over my S1. I was offered a spinal fusion in 2014 and I declined on the basis most days it was fine and I could manage the occasional flare ups. I started physiotherapy to strengthen my core to help support my spine and all was going really well. I had the odd twinge that usually subsided with the use of anti inflammatory medication and some ultrasound treatments. I carried on like this quite happily until around the 10th May.
I had been doing some sewing and as I packed up for the day, I went to get up from the table and there was no power in either of my legs. Basically nothing happened. Any normal person would have probably freaked out but this kind of thing has been happening to me for years so I just sat there for a bit figuring out my next move. I tried again and I could get up out of the seat but my back was now in spasm, with pain shooting down both my legs and I couldn't stand up straight. I was in such a bad way that I actually rang the doctors there and then. Most times I will manage my own condition for as long as possible before getting help. I knew that this wasn't going to get any better without intervention. The doctor prescribed me diazepam and to avoid being seated for long without moving. I stayed off my sewing machine for a few days and did as I was told. Whilst on the diazepam it was pretty impossible to do anything anyway as I couldn't think straight.
My back slowly improved but I was getting stuck if I bent forward at all, even a tiny bit. I couldn't carry anything heavier than a full mug of tea, even if it was in a bag over my shoulder as that also caused me pain. I was struggling to get out of bed, once flat on my back I was like an upturned tortoise struggling to right myself and I was really struggling to get out of chairs. No position was comfortable, anything pressing on my spine like a waist band even lightly was causing me pain. Then all of a sudden it really eased up so I started to do some very light Pilates exercises, very carefully. Within 4 days my back was as bad if not worse than it had been in March. I soldiered on through Thursday but by the next day the pain was wearing me down and I had to ring the doctors surgery.
This is where the fun really began! Due to Covid-19 they had now implemented a system where you could no longer request to speak to a gp, you had to fill in a form for an E-Consult. The problem was every time I told the truth in these boxes about how bad the pain was it kept telling me I needed to ring 111 and ask for advice. This was ridiculous as all I needed was some Naproxen and some diazepam. I know that the algorithm was picking up on Cauda Equina Syndrome as a possibility due to the level of pain I was in. However having had a bad back since the age of 16 I know what the red flags are of this syndrome and I didn't have any. If I did I wouldn't be ringing 111 but 999 as I have always been instructed to do so by the numerous doctors I had seen over the years. I know the system can't be perfect, the issue is when you are dealing with a "professional" patient who has managed their conditions for years it becomes tedious dealing with machines that just don't get that and look for red flags.
I had to keep going back a page and adjusting my answers to stop it repeatedly telling me to contact 111. Now please don't do this yourselves, I am not advocating anyone lies on their e-consult form. Tell the truth and follow the advice of the professionals not a blogger. I must have written close to 2000 words as each box had the ability to take 500 characters and I managed that on most! When I eventually managed to get it to agree to allow a gp to contact me I was left with the message that a doctor may not contact me until 18.30 on the following Monday. I was filling the form in on Friday 2pm........WTAF?
Clearly the doctors that had access to my form realised that I needed help before then and to be fair I was contacted less than an hour later. I was in tears at the prospect of not being "seen" until Monday and had I had no contact from a gp by close of trade I would have ended up ringing 111. The doctor I spoke to was lovely, he had clearly read all the information that I had given him, that I had tried everything I could at home and it wasn't working. He also gave me a quick question about Cauda Equina - they always ask that you haven't lost control of your bladder or bowels or haven't gone numb in the genital / anal area. I said if I had I would have called 999 and not called you, he laughed and said I can see from your notes you have been dealing with serious spine issues for 30 years ( and that made me feel fucking ancient cheers!) and you have a sensible head on your shoulders. I told him the only medication that touched it since this kicked off in May had been aspirin and the diazepam to get the muscles out of spasm. I asked for Naproxen and a few diazepam to use when it got bad. He was happy to write a prescription for both.
It took 4 doses of naproxen ( 2 full days) to get the pain under control and now it is better than it has been in ages. Hubby has been giving me some ultrasound treatments. I have been very careful not to lift anything heavier than a cup and to ensure that I don't remain static for too long. I am hoping that things stay this way. By the end of each day I end up with a little pain that gets a bit uncomfortable but nothing like what it was last Friday when I didn't know what to do with myself. When I sit on the sofa I sit on my special cushion. I think I am just going to have to be very careful for a while until this settles down. The doctor I spoke to last week felt that my spondylolisthesis had probably shifted forward and I would concur. For months I have had the feeling that my sway back was getting more severe. The middle of my spine feels like it is being pulled forward and my pelvis has just felt out of alignment. That day back in May it probably just moved a little further again and has been pressing on the nerve roots.
My mum asked if I could feel a step in my spine but at the time my spine was so sore I couldn't have anyone touching it without gasping in pain. When Mr Myasthenia kid was doing my ultrasound treatments I was constantly having to ask him not to put any weight onto the probe as my back was just so sore I couldn't cope with the added pressure. I actually can't remember a time when my spine has been that bad. My goodness I was terrified that I was going to end up having emergency surgery! I am so pleased that it has improved so significantly.
I've always said I had a bad back but that really didn't describe what it was like at all. Every movement, even wiping my own bum was causing me to cry out . I have since done a lot of reading about Spondylolisthesis and so much makes sense now. Why my buttock muscles always feel tight and sore, the pain on my iliac crests where it feels like the ligaments and tendons are tearing. It is all being caused by the movement of the vertebrae in my spine. It probably also accounts for my bouts of Piriformis Syndrome which in the last 6 months I have had some awful flare ups of.
So for the time being I have avoided hospital and a spinal fusion but for how long who knows?
It is one of those weeks where stuff is going on behind the scenes that is private stuff. I share as much as I can on the blog but I am human and we all need some element of privacy/ Everything is ok with Mr Myasthenia Kid and I and of course our beloved Dembe. So don't go worrying about us, I am just not in the mood to write a blog post, like I normally would so I thought I would share with you a few of my latest makes.
I have been searching for a lampshade for our landing for ages, years probably but just couldn't find anything I liked. I found out that you can buy kits to buy lampshades so I had a look at the website ( if anyone is interested https://www.dannells.com/ ). I watched the video that accompanies the kit a day or so before hand and then gave it a go. I deliberately made sure that I didn't rush and that I followed all the steps laid out in the colour instructions. Plus Jay aka Mr Myasthenia Kid was on hand to help when I needed it. I have to say I am ridiculously pleased with it. The fabric is Liberty called Conservatory Fruits, I bought half a metre of it last year because I liked it but had no clue what on earth I would do with it. Then I decided this was the project it was destined for. Is it sad that I am just thrilled with my work?
I have also been plodding away on a Christmas quilt I am making for my physiotherapist. I do a block every so often . I have just managed to complete the biggest block ( which is made of 4 smaller blocks ). I have also managed to get over my fear of metallic threads by switching to a totally different brand and the difference has been night and day! So I have managed to incorporate it onto this quilt.
I also have been brave enough to go back to my blanket that I am crocheting, it is the most complicated piece I have done - it is an intermediate level pattern and I am not ashamed to admit I have probably tried to run before I can walk with this one! More than once it has been shoved into a bag and left in the cupboard for weeks at a time.
The blanket is made of 12 squares, numerous triangles and Octagons. So I am trying to slowly make my way through the squares.
I also finished this shawl in the last week, I tend to crochet when I am in bed or too ill / sore to sit at the sewing machine.
I really enjoy crochet as I find it really relaxing and almost like meditation.
I'm pleased I have been able to continue with my crafts during the lockdown as I think it would have hit my mental health quite badly if I hadn't have been able to. I have still been making masks as and when I can.
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