End of my tether

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.

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