Imagine temperature-related conduction block occurring across many different neuronal systems in your brain and spinal cord. This explains why pwMS often find cognitive and physical tasks exhausting.
" My physio said the fastest way to decrease core temp is to drink iced water. It does help and conversely a hot drink makes my vision blurry and other symptoms worse, but immersion in cold water is more effective (like the sea)."
"I wonder whether you’re familiar with Kool Ties. I recently bought 2 on-line from the US. So far, they provide excellent relief from over heating and are significantly cheaper and more user friendly than ice vests. All you need to activate them is some fresh water and the cooling effect seems to last for a couple of days before they need to be recharged in more water. I don’t know whether there’s a limit to re-use but everything else on the website seems to be accurate so I assume that I’ll get to enjoy these for a long time."
Yesterday I sat on the sofa with my feet in a washing up bowl filled with cold water. I found this very helpful in keeping me cool. My feet stayed submerged for around 10 minutes. Even after I took them out, they, and I, stayed cool for a good 40 minutes or so 👍🏻
I have been researching Histamine Intolerance recently. Some foods contain histamine and others can block our body's ability to process it. I am recuperating from abdominal surgery and wanted to minimise activating my 'IBS', turns out low histamine foods make all the difference to me. (My husband's hay fever has drastically calmed down since the day he omitted coffee, the difference is incredible.) I read this paper, 'Histamine Influences Body Temperature...' and wondered if it might be useful to pwms struggling with the heat. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2853029/ My understanding is of course limited but I wanted to mention it in case it helps someone.
Thanks for this email ProfG, most especially the two vids showing conduction, that I’ve not seen before.
I’ve just spend several minutes messaging family and friends referencing loss of function and physical + cognitive fatigue and the added impact of heat. Now, I’ve done this previously, but without the benefit of being able to show them the vids. The difference is truly shocking and I’m confident will help reinforce the reasons for the impact of MS and the added impact of heat!
My approach has been to go into work on my days off to sit in A/C, mist myself with water, wrap a wet cloth around my neck, strip off at home (not in public) and sip iced water
High tech cooling vests may be expensive, but they also make lower tech ones. I guess it's always hard to define "expensive" but I have a ThermApparel vest (https://www.thermapparel.com/shop/womens) that definitely works. I use it for moderate exercise or for times when I'm doing a stationary activity (lunch, etc) on a very hot day.
Jul 18, 2022·edited Jul 18, 2022Liked by Gavin Giovannoni
I was very heat-sensitive my first summer with MS… but it went away completely after treatment with alemtuzumab. When I was heat-sensitive, I used a cooling vest with phase-change material that freezes at 4 degrees to exercise outside in the summer. The vest kept my body temperature cool for about 3 hours. I think many people will increasinly need to ise such vests due to climate change. This whole experience is what led me to start a research programme on disability-inclusive climate action.
One question, I seem to react to getting very cold as well. It only occurs when I swim in the sea for longer than 5 minutes. After I got out my sight starts to deteriorate, it’s like a jumpy vision not able to focus. This ends once I am in a hot shower immediately.
Thank you for the post about heat. I have been using Deep Freeze cold gel topically to help manage heat. Active cooling clothing looks an interesting option to consider in the future too.
Email comment:
" My physio said the fastest way to decrease core temp is to drink iced water. It does help and conversely a hot drink makes my vision blurry and other symptoms worse, but immersion in cold water is more effective (like the sea)."
And another one:
https://www.nytimes.com/article/excessive-heat-stay-cool.html
Email response.
"I wonder whether you’re familiar with Kool Ties. I recently bought 2 on-line from the US. So far, they provide excellent relief from over heating and are significantly cheaper and more user friendly than ice vests. All you need to activate them is some fresh water and the cooling effect seems to last for a couple of days before they need to be recharged in more water. I don’t know whether there’s a limit to re-use but everything else on the website seems to be accurate so I assume that I’ll get to enjoy these for a long time."
Yesterday I sat on the sofa with my feet in a washing up bowl filled with cold water. I found this very helpful in keeping me cool. My feet stayed submerged for around 10 minutes. Even after I took them out, they, and I, stayed cool for a good 40 minutes or so 👍🏻
I have been researching Histamine Intolerance recently. Some foods contain histamine and others can block our body's ability to process it. I am recuperating from abdominal surgery and wanted to minimise activating my 'IBS', turns out low histamine foods make all the difference to me. (My husband's hay fever has drastically calmed down since the day he omitted coffee, the difference is incredible.) I read this paper, 'Histamine Influences Body Temperature...' and wondered if it might be useful to pwms struggling with the heat. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2853029/ My understanding is of course limited but I wanted to mention it in case it helps someone.
Thank you Dr. G.! This is a big issue for me, being in Southern California.
Thanks for this email ProfG, most especially the two vids showing conduction, that I’ve not seen before.
I’ve just spend several minutes messaging family and friends referencing loss of function and physical + cognitive fatigue and the added impact of heat. Now, I’ve done this previously, but without the benefit of being able to show them the vids. The difference is truly shocking and I’m confident will help reinforce the reasons for the impact of MS and the added impact of heat!
I have a cooling necklace which I bought online. It goes into the freezer. It looks nice too! Recommended by Dr Gretchen Hawley, physio!
My approach has been to go into work on my days off to sit in A/C, mist myself with water, wrap a wet cloth around my neck, strip off at home (not in public) and sip iced water
Excellent article and videos - brilliantly explains the reason pwMS struggle in the heat - have shared with support groups. Thank you so much!
High tech cooling vests may be expensive, but they also make lower tech ones. I guess it's always hard to define "expensive" but I have a ThermApparel vest (https://www.thermapparel.com/shop/womens) that definitely works. I use it for moderate exercise or for times when I'm doing a stationary activity (lunch, etc) on a very hot day.
I was very heat-sensitive my first summer with MS… but it went away completely after treatment with alemtuzumab. When I was heat-sensitive, I used a cooling vest with phase-change material that freezes at 4 degrees to exercise outside in the summer. The vest kept my body temperature cool for about 3 hours. I think many people will increasinly need to ise such vests due to climate change. This whole experience is what led me to start a research programme on disability-inclusive climate action.
Very interesting, thank you!
One question, I seem to react to getting very cold as well. It only occurs when I swim in the sea for longer than 5 minutes. After I got out my sight starts to deteriorate, it’s like a jumpy vision not able to focus. This ends once I am in a hot shower immediately.
Is this something you have heard before?
Thank you for the post about heat. I have been using Deep Freeze cold gel topically to help manage heat. Active cooling clothing looks an interesting option to consider in the future too.
I have a few friends who have done 1-2 years of
Mavenclad and noticed that we aren’t nearly as sensitive to the heat as we used to be.
Is this actually a thing? I’d love an explanation - hypothetical of course.
This is the first summer I’ve been actually enjoying since my 30s! I can even work outside
In the heat for up to an hour without crashing physically and cognitively. 🤯
I wet a sarong and drape it round my shoulders! Make sure you keep wetting it throughout the day! I also have been known to sleep under a damp sarong!