Mercury Rising: Heat and MS

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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scorch, sun and heat, expectations

Jennifer Silver Linings
My favorite season is fall, which is almost tied with winter, then spring, and finally, summer. I love fall for being the beginning of the holiday season as well as for the change in temperature. Although, since moving to Southern California, it seems to move in the opposite direction of my liking.

This seasonal pecking order used to look quite different, almost the antithesis of what it is now. I began swimming as an infant and spent my youth sailing or enjoying the beach with friends. My first car was a used Rabbit Cabriolet (thank you, waitressing), and I felt best when the sun shone bright and warm. I attended UC Irvine, loving the sunshiny days as much as the academic challenge, and ultimately I became what I swore I never would: a permanent resident. After returning home to my beloved Marin County, I met and married a man who lived in, of all places, Southern California. I relished in the warm summer days, cruising my convertible beachside down the Pacific Coast Highway, returning home a little tousled and sun-kissed.

My, how things have changed, and not of my own choosing.

Let me preface that I love the concept of warm, sunny days. They just do not like me in return, and if you have multiple sclerosis, you probably share that sentiment. After experiencing heat stroke following a county fair, I understood that prolonged heat exposure was my kryptonite. My legs lost feeling and strength as my speech and motor movements rapidly declined. This is Uhthoff’s syndrome, an exacerbation of neurological symptoms in those with MS when the body becomes overheated.

Uhthoff’s is real and it is dangerous. I have learned several coping mechanisms to manage body temperature since my frightening experience, as I live in mercury rising.

It is imperative to keep your living space as temperate as possible, using air conditioning and fans. I have a medical baseline, meaning my electric company offers 25 therms of gas along with 500 kilowatts of electricity at a discounted price, above which it rebounds to the normal rate. The medical baseline program is available to those with conditions that worsen due to excessive exposure to heat or cold. Look into a synonymous program with your electric company.

Inevitably, we find ourselves in the heat, be it for work, appointments, errands, or just the passageway between two points. I have found cooling cloths to come in handy. After a quick soak and a snap, these towels stay cold for four to six hours. I have several and always take one with me when I travel, be it by car or plane. I have found them to come in handy at the most opportune times. Cooling vests are another effective way to cool your core, as it is when our core overheats that neurological functions diminish. It is essential to be mindful of any exacerbation and reverse things as soon as possible. This said, prevention is the best medicine.

I respect the syndrome but had a difficult time acclimating. I dread the season I used to find fun, adventurous, and alluring, instead opting for the cool and controlled climate in my home. The fallout from the day spent at the county fair cured me of any curiosity I had about tempting fate, but it is hard to miss outdoor activities I would otherwise love. Therefore, it is vital to create our own. I welcome the day early in an effort to be productive before the heat, and when possible, relish in a beautiful beach sunset. I sit outside with the birds singing their morning song and enjoy outdoor dinners on the patio with friends and family. I have created a new reality that is equally fulfilling, not because I wanted to but because happiness and fulfillment are choices, and I chose joy.

Life with MS is a constant juggling act; there is a myriad of variables of which to stay mindful. Heat exposure, specifically Uhthoff’s syndrome, is another one of those variables, and only we can set ourselves up for success. I have come to find that the summer within far outshines anything I could possibly experience in the confines of one season.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Laurel B. avatar

Laurel B.

I am a fellow Northern Californian (San Francisco) who married a Southern Californian (Irvine!). I've never cared for warm weather, and now with an MS diagnosis and a small melanoma (!) last year, plus our record-breaking warm winters these days.... I so long for the cool, foggy climes of Northern California and the Pacific Northwest!

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Jenn Powell avatar

Jenn Powell

Ahh so you understand how I long for those cool, foggy days! I’m in OC too and it’s quite the adjustment.

How is your melanoma? I hope it stays away.

Do you have a medical baseline with SoCalEdison? The reduction in costs is helpful yet my bill is still insane.

Thank you for taking the time to read and respond! If you ever need any good docs I know several in our area.

Jenn

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Sarah Fuller avatar

Sarah Fuller

I used to have horrendous heat intolerance then my neurologist suggested 300 mg (NOT mcg) of Biotin (B7) a day (100 mg three times a day) for the fatigue I was really suffering with. Not only does it help with the fatigue but I found an unexpected bonus is that it's completely taken away my heat intolerance! I can go out on 40ºC+ days to look after my chooks WITHOUT seizing up now. It's wonderful. Def worth a try for others suffering.

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Reni avatar

Reni

Hi Sarah
Where do you get such a high biotin pill from?
R

Reply
Jenn Powell avatar

Jenn Powell

I have powdered (concentrated) Biotin I bought at Amazon. You can also find the pill form there.

Thanks!
Jenn

Reply
Jenn Powell avatar

Jenn Powell

What a terrific suggestion, something I had not been aware of. I take powdered Biotin as per my neurologist as it’s been inconclusively linked to myelin regeneration.

Thanks so much for reading and responding.

Jenn

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Jeremy Burston avatar

Jeremy Burston

I discovered that Uhthoff's phenomenon is a function of high humidity exacerbated by heat. This was after I went from my home in Brittany to St. Sebastian in Spain to collect a car. I expected that I would have major trouble with the heat in August, but I was pleasantly surprised that the effect was minimal compared to the heat in Brittany. We went on to stay in Bordeaux and La Rochelle, both of these cities would normally have been too hot for me but not this time. I discovered the humidity factor when I was trying to explain this.
I am also taking the biotin at 300mg daily, so we will see how this summer goes!

Reply
Jenn Powell avatar

Jenn Powell

How very interesting, humidity certainly exacerbates my heat-related exacerbations.

Thanks so much for reading and writing, I wish you well this summer.

Jenn

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Bill avatar

Bill

Then I am the opposite. Struggle in the cold. It exacerbates my symptoms, while I feel great in the heat. Such an upredictable disease.

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