hey everyone,
in the last two months, I’ve had two pretty dramatic - and pretty frightening - flares of symptoms including difficulties walking, fatigue, fever, balance, irritated bowels.. etc. I thought they were relapses, and the first time around I was admitted to A&E.
only I recently learned that this is not only common, but even has a name: uhthoff’s phenomenon. and so I wanted to know what your experiences of UP have been? what are your tips for managing, or recovering from, episodes?
for what it’s worth, mine appeared to have been triggered by overworking, under sleeping, and failing to regulate core body temperature. but anything else that can help understand UP a little better would be appreciated
I hope you’re taking care in the heat..
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Hello @jamesdjgale i think that heat is a bit of a killer/ real drain for a lot of people with MS. For me the best treatment is : don’t get hot ! I’ve stupidly stayed sitting in the sun a bit too long a couple of times and then really struggled to get up and walk to the shade or indoors. It takes me maybe 20-40 minutes to recover .
a neck fan helps - blows air over your neck and head ( I bought one a couple of years ago for around 20-25 £.)
you can also buy cooling vests which I’ve never tried . From what I understand they are like a waist jacket with large pockets for ice packs.
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Heat is the main thing for me - it just knocks me for six. I feel so much more disabled relative to normal people in summer than I do in winter for that reason.
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thank you alison. curiously, I actually rather like the heat, or at least the heat of continental europe: it seems to suit my body and spirit very nicely, and I’ve had no issues abroad. conversely, the cold is quite tough for me: the left leg can lock up
it’s not so much heat as core body temperature; failing to regulate the internal temperature is what seems to provoke it…
anyway, I hope you’re keeping cool at the moment
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thank you for this - I hope you’re taking care in this heat wave. very draining!
oddly, I like the heat, or at least a warm climate in the med. it’s british heat I find heavy, stifling, suffocating. but greece, the south of france.. totally fine
a neck fan and cooling vest are both excellent suggestions. I’d add to those a single sheet in bed at night, lukewarm showers, and cold water on wrists…
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Hi James. That doesn’t sound like much fun a all mate. I also like the sunshine so, I’v been outside doing a few bits in the garden lately - that worries my missus because wearing myself out tends to bring on my seizures. brilliant eh 
I will look up that Uhthoff thing though - fore warned/fore armed and all that 
I hope you’re feeling better now 
Jon.
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thank you for your kind words jon. for what it’s worth, while it’s certainly gnarly at the time, it seemed to clear up extremely quickly. I was relieved to read that in itself is a mark of UP
equally, in my experience it wasn’t the sunshine itself that triggered the flare up, but core body temperature. so being extremely hot in bed at night, or failing to shower after going swimming, were the bigger triggers as part of a wider range of things (also including very hot showers and overworking)
it’s all trial and error, isn’t it
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Yes, it does seem to be mate but, it’s a hell of a thing to have to learn about through trial and error - never a dull moment eh 
I may be starting to get mine figured out - my brain lesions and demyelination are mostly on the right side so, any small focal aware seizures tend to have an impact on my left side (mostly arm and leg so far) for a while. It’s not brilliant but, at least I kind of know what I’m working with
Jon.