HOT

Well b*gger me it is HOT here in the UK at the moment. Now I know the rest of the world laughs when anyone in the UK says it is hot but please remember heat is relative to what you are used to. Also because our Summers are traditionally not that hot, 24 degrees Celsius is probably about average. However this last week temperatures have been rarely lower than 28 to 30 degrees Celsius making it unbearable for me  and for poor Dembe.

In the UK we don’t do air conditioning unless it is in a shop or a very fancy home. Air conditioning units are beyond a lot of peoples means at around £350-450 upwards. Our homes have been insulated to within an inch of their lives. Meaning they stay hot no matter what doors and windows are thrown open. Believe me I have tried the keeping the windows closed and curtains drawn during the day to keep the temperature down but it didn’t work. It ended up even more suffocatingly hot than usual. We have the loft hatch open in the hope that it gives the hot air somewhere to go. But other than living in my refrigerator I am just soldiering on.

The heat and Dysautonomia do not mix, I can’t regulate my temperature on the best of days so dealing with this unrelenting heat is a nightmare. Standing up my vision is greying out, I have upped all the medications I can to try and retain fluids within my system but it still isn’t enough. I am ending up wetting my hair multiple times a day to get my body temperature down and get some relief. I have got so fed up with it this week that I have bought some freezer blocks to keep me cool during the day. At night we are using hot water bottles that have been filled with cold water and frozen during the day. This at least is helping us sleep. Sadly though my sleep is being interrupted by heat induced migraines.

I never used to suffer with migraines caused by the Summer heat until last year when I got an absolute shocker of a migraine on the Whitsun bankholiday ( a national holiday on the first Monday of June). It happened to be the first day that was very hot and I had spent a lot of time outdoors. I put it down to day drinking and being dehydrated. However the same thing happened this year and there had been no alcohol involved. I had been out in the sun a lot as it was the day Jay and his brother scattered their fathers ashes on Dartmoor, I had spent the time with his mum out in the garden. Again the migraine that followed was another shocker.

It is so frustrating when you get a migraine due to the weather as stopping it happening is out of your control. I have now ordered some freezer blocks from Amazon to freeze and then use during the day to keep cool. Every night for the last three days I have ended up going to bed with a migraine either brewing or in full swing. Last nights was particularly bad as it came back again at around 3am. I woke up to a world of pain as my whole face felt like it was being smacked with a shovel. Thankfully it did ease off with the help of sumatriptan which has been a game changer with my migraines and it makes me angry that despite me visiting the gp practice on numerous occasions this wasn’t offered to me until 2020 when my migraines were making me lose 48 hours of my memory. Which was incredibly scary.

Dembe has also been suffering with this heat, we have had to cancel his Wednesday afternoon walk this week that he adores with Sophie, Beth and the gang as it is just too dangerous to walk him as it would be risking heatstroke. Sophie did offer to walk him in the morning but as Jay is home and he would walk him at 5am there was no point. During the day because Dembe simply refuses to use the garden to go to the toilet, even a wee (!) Jay has been taking him to the shaded lane that runs near our house. Dembe gets hosed down before and after and Jay always checks the temperature of the tarmac before walking him to ensure he doesn’t burn his feet. I am glad he is that much older as he is less fizzy and will sleep during this heat.

To help him with the heat we bought him a splash mat, I think Jay enjoyed it more as Dembe seemed deeply suspicious of it, only going on it when the jets were off.

He really enjoyed splashing around in the water that had collected in the pool. I am happy as long as he is enjoying himself and staying cool. He also likes lying down in the shade on the flag stones on the patio.

We hose this down regularly to ensure it is lovely and cool for him.

We may get a slight reprieve over the next few days as we have been forecast heavy thundery showers. I really hope so as we do need a short break ( at least ) from the onslaught of the heat.

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There will be no blog post over the next two weeks as Mr Myasthenia Kid is on leave from work and we are planning on spending the time together whilst there are some contractors here doing some work on our house.

Sumatriptan positive news

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. 

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.

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.