Month: May 2020

Update on End of my Tether

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

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….

End of my tether

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

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.