Summer Heat and Multiple Sclerosis

Summer time brings to mind beaches, swimming, vacations, outdoor activities with your children. For those with MS, it means that but it also means cooling vests, air conditioning and if your MS gets aggravated by the heat, increased symptoms. This effect was first noticed in 1824 when Charles Prosper Ollivier d’Angers put a patient in a hot bath and noticed worsening symptoms. Wilhelm Uhthoff noted that this not only occurs with patients in a hot bath but also with increased core body temp due to exercise and activity.

“Demyelination produces alterations in saltatory conduction, slowed conduction velocity, and a predisposition to conduction block. An estimated 60–80% of MS patients experience temporary worsening of clinical signs and neurological symptoms with heat exposure.”  In addition, lesions can occur in parts of the brain that manages temperature regulation.

A report on hypothermia in MS lists different MS patients who died due high temp levels and the inability to regulate their temperature. A temp of 32 degrees Celsius (89.6 Fahrenheit) caused the death of a female MS patient in her early 60s  in 2018. I feel this is not discussed as often as it probably should be. At minimum I think the doctors should be advising their patients of possible issues rather than finding out on their own. There are people newly diagnosed that don’t do research because they believe their doctors will tell them what they need to know.

“Fatigue during thermal stress is common in MS and results in decreased motor function and increased symptomatology likely due to impairments in central conduction.”

How this shows up for me means no hot coffee, hot beverages increase my core body temp so even in the winter I drink iced coffee and iced tea. My house is set to 74 degrees Fahrenheit during the warmer and hot months. When the ambient temp reaches 75 all of the nerves in my body react, electricity pulses through every nerve causing a ridiculous level of pain.

Things that can help cool you down after exposure to heat or increased core temp are frozen treats, ice cubes, ice packs on your body, cooling vests, very cold drinks, and cool showers are some that work for me. I choose to spend the hotter parts of the day and season in side where I can regulate my body temp because sometimes it is days before my body recovers from over heating.

I have tried several types of cooling vests, all are meant to be worn close to your skin under your clothes. The cotton vest which the style is most like a regular vest in style is fine when you put it on but once it is no longer icy it is just very heavy and bulky. I tried another that used columns of ice packs in a lighter weight style vest, but it was still bulky under clothes. The most recent one I purchased is made of the wicking type material used in sports clothes so it is light weight and does not add a bulky layer of fabric when you are trying to cool down. It is a little longer than a sports bra and uses columns of ice in pockets; this allows you to add as much or as little columns and you need and can be replaced fairly easily. It fits ok under a sundress so while it will still be noticeable it looks more like a bra than a weird accessory and replacement columns are small enough to fit in a lunch box sized cooler if you are going to be out for the day.

Sources:

wcmea_newsletter_fall_2010

Hypothermia in MS

https://www.physiology.org/doi/full/10.1152/japplphysiol.00460.2010

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980380/

https://www.stuff.co.nz/national/100921402/christchurch-woman-with-multiple-sclerosis-dies-of-overheating

https://www.webmd.com/multiple-sclerosis/news/20150527/ms-may-raise-odds-for-earlier-death-study-finds#1

7 Strategies for Coping With MS Heat Sensitivity

 

 

 

Sensory Overload

Back in my teens and early twenties noise did not bother me. I used to listen to loud music, have the TV on in the background while I studied or wrote it was fine. Now, it makes me crazy and not in the sense that it is just annoying because I am old.

I am in my thirties, I am not sure if it’s related to my MS, Meniere’s or both as people afflicted with either complain of sensory issues. When I am trying to focus on one thing and there is noise or talking or a loud TV, music anything, I get actual nerve pain. This week I was helping my youngest son with his reading homework, he was reading aloud to me as I listened; my oldest son was talking to my husband who then came out and started asking questions. I lost my shit a little, I didn’t realize I was yelling in response until my husband said something, all I knew was that I was trying to focus my attention on one thing and then I was overwhelmed with sound.

For people who don’t have this issue think nails grating on a chalkboard (though that sound doesn’t bother me, probably from nerve damage in my ears), in addition to the feeling of that sound think of something that gives you uncontrollable shivers down your spine and go ahead and throw in some heart racing chest pain inducing feeling. I can’t speak for all people with sensory issues, but that is what it feels like to me. It’s terrible, when it’s happening I just want it to stop, but you cannot control the sound of everything around you if there are other people involved.

My therapist is always telling me to take deep breaths, mostly when stress hits me or my PTSD kicks up. It is a hard thing to remember to do, especially when panic sets in because your body has decided to revolt its surroundings. This thing happens to me way more than I would like, well actually I would like it to never happen so I guess that I would like to be able to control when. If I go out to dinner with my husband, the sound can become too much, out with the kids, or play dates, social events. The problem is that it is not consistent, it’s not every single time there is sound or only when I am doing a certain thing.

If you know someone with sensory issues, take a beat, they may be snappy because their body just attacked them and they can’t handle anything else at the moment. Ask before touching, because I have even had to explain to my kids that “light” touches are actually painful to me as it sets my nerves on fire.