Question of the Month (May ’13): Uhthoff’s Phenomenon (Heat Intolerance)

[sllowe]

WHAT DO YOU DO ABOUT HEAT INTOLERANCE?  

Wilhelm Uhthoff recognized the connection between heat and the worsening of MS symptoms back in 1890, and got this fun symptom named after him.  

Special thanks to Immisceo for requesting this month’s question.  She wants to know how the heat affects you and what creative actions you take as the temp rises to maintain your cool and functional ability.  So how DO you make sure ol’ Uhthoff doesn’t shut down your summer enjoyment?



Our Monthly Question focuses on a specific topic. There are no right or wrong answers -- we just want to hear about your experiences. Whether you are a veteran of this forum, are new here or have been lurking and waiting for inspiration - please share your thoughts.

Thanks again Immisceo for the timely question suggestion.  
Community members are encouraged to let a Co-CL (purple flower) know if there’s a question you’d like pondered in a future month.  

Thank you!
~Your community leaders

[MH Community Mgr]

Thanks for sharing your comments with us. They're helpful for our community members.   Everyone is welcome to continue answering this thread, as well as look for new questions each month!

Best,

Cheryl
MedHelp

[Milliepede]

Recent dx but symptoms for 8+ years. I've been 'heat intolerant' for a long time but one of the things that sent me to my PCP (that started the journey to dx) was increasing symptoms when I got too warm.

For me, 70 degrees is the upper limit of tolerance. Living in a high humidity area doesn't help. Typical symptoms are a weird vertigo, buzzing in the brain (can't think of a better way to describe it), double vision, balance issues and weakness in the legs (particularly left side). And fatigue! Something that's there all the time but gets worse x10 in heat exposure.

No more baths - showers only but not hot, just tepid. Drinking lots of water all the time and ice water on hot days. A/C in the bedroom, keeping it below 70 24/7 (year round). Haven't found a cooling vest that works here in Oregon.

Still new to dx so still finding ways to cope.

Lots of great ideas here. Thanks for question - and answers!

[TashaPup]

Dennis...I am like you, during the night.  I actually sleep with a fan blowing over half of my bed, and a portable heater, set at about 67 degrees, emanating heat, toward the other half of my bed.  Crazy, huh?  But, when I wake up totally hot and sweating, I have to slide over to the 'fan side' of my bed, to cool off.  But then, after my body cools off, I get really chilled, and I have to warm up a little.  I don't know how else to do it!   Jan.

[rowanfoto]

I had my first attack in 2006, half my head went numb. that went away and I had another attack in 2009 when my left eye went fuzzy, lacked contrast and was blurred. At the time I was living in hong kong, and it was drawing to the end of a long hot summer. My vision almost completely recovered over the space of 3 years.

Last February I was diagnosed with MS after having a big, all over body attack, which affected my walking, my cognitive functions, my vision and my balance.. shortly before I was doing 10k runs in under an hour, and some pretty hardcore boxing training.

Last week the neurologist I am seeing introduced me to Uhthoffs. I had no idea what it was before as no one in the medical profession had ever mention it existed. It makes sense now that the majority of my MS episodes are related to putting my body under a lot of stress, combined with heat and heavy exercise.

I know the more that I do to prevent MS now, the more it will benefit me in the future. I have just turned 33 and really love exercise and generally being fit.

Can I still go for runs? and how long should I exercise for? Or is it a case of no exercise ever again, or risk another big attack?

Does heating your body up cause permanent damage or is it temporary, just when you are cooling down? I have read various conflicting stories.

Any advice would be greatly appreciated.

Rowan

[twopack]

It's been great sharing ideas this month.

If you've got plans to enjoy the sun and outdoor activities during the long week-end and Memorial Day celebrations we're having in the US, you might find this Health Page helpful.  http://www.medhelp.org/health_pages/Multiple-Sclerosis/Heat-Sensitivity--MS/show/1244?cid=36

It's one more example of the excellent resources you can find noising around in that section.

There's only a few days left in May once we return to a short work week on Tuesday.  Be sure to share how you survived the heat and fun and what You did to keep your cool......then watch for June's Question of the Month to roll out.

[twopack]

I can feel both my body and brain begin to shut down as soon as external temps rise above the mid 60's.  I love to see the sun shining as I look outside from my windows but ceased being a fan of summer heat quite a while back.

I sip ice cold water while at work and make frequent trips to my "safe zone" in the well air conditioned office to tolerate the higher temps that seem constant in that environment.  I also have a variety of cooling packs.  Use them mostly on pulse points in emergencies and to pre-cool my core before starting heat producing activities.

For me PREVENTION works best as recovery from overheating doesn't come easy.

[doublevision1]

Kyle - thanks for the great info.  Will check it out!

[Sailorsong]

Just got an email that my NEW Phase Change cooling vest will arrive this Friday. Couldn't arrive at any better time as the forecast here is for 87 on Saturday. This should give me a good test for the vest. If it works I'll then buy an extra set of packs for the vest so that I can stay cool 24/7.

I already have an ice pack based cooling vest but for me it is too cold. The phase change vests maintain 58 degrees when frozen.

Next I need to find a way to chill (Freeze) the phase change packs while traveling so that I may not become a prisoner in my own home again this summer.

Dennis

[kwarendorf]

Because the vest uses ice packs (up to 10 of them) to cool, rather than evaporation, it is a bit heavy when you pick it up. Once it was on I hardly noticed it. It looks like Henry Blake's* fishing vest :-) The one I have has all kinds of adjustments that allow you to keep the vest as tight as is comfortable.
It's not nearly as cumbersome as the neck wrap version with the flap down the upper spine, which I also have.

Here's the vest I have: http://www.polarproducts.com/polarshop/pc/viewPrd.asp?idproduct=32

[doublevision1]

Kyle - yes it's pretty incredible scenery isn't it?  We'll be heading up that way in a few weeks when our East coast family comes to visit.

Your experiment without and with the cooling vest was interesting. Crazy what a difference it makes.  How hard was it to get used to?  Does it feel bulky and/or add a lot of extra weight?  Never tried one but think I might.

[kwarendorf]

As I read your message DV, my computer desktop switched to a pic of a waterfall, viewed from our car on the Ice Fields Parkway, between Lake Louise and the Columbia Ice Fields! Spectacular :-)

As to heat, two weeks ago I went for an outdoor walk. It wasn't hot, maybe 65º. After 30 minutes my left leg problems started. It develops a mind of its won. I tend to fling it rather than properly picking it up and putting it down to walk. It was the worst instance of this I've had. It was a bit of a struggle to get home.

This Sunday I went for a walk and wore my new cooling vest. The weather was about the same as before, maybe a little warmer. It was 40 minutes before my leg started acting up and when it did, the issue was MUCH less severe as the week before.

The vest kept my 'core' temp down and seems to have improved my heat tolerance.

Kyle

[doublevision1]

Yes I've had Uhthoff's pretty much since day one with this disease.  Exercising, too warm baths, being out in the sun will all cause my limbs to feel heavy and jello-like, send jolts of electricity down my spine and to my feet, induce double vision, tighten the already constant squeezing of my left hand, and drain me of all energy.  I have to break up my exercise in 20 minute chunks to avoid the worst of it.  I basically do not go out in the sun, which is not all that hard for me as I'm not a real outdoorsy person anyway, and don't mind the added benefit of no wrinkles. :)  

I too find that humid heat makes me feel worse, more jello like than dry heat, but dry heat does bothers me.  I live very near those Canadian Rockies that Kyle visited and if it's hit enough for me to sweat, I will be experiencing Uhthoff's.

Cold showers, or running my hands and/or feet under cold water, drinking ice water, freezing my pillow case (seriously), holding a frozen gel pack in my bad hand, these things all help.  And next week we're having central AC installed.   We got it in our last home the year after dx and summers would have been miserable without it.  We just a string of very hot days (not all that long after our last snowfall, go figure!)  which made this new home very warm, brutal at night for sleeping, so I will be happy once the new AC is in.  

On that note, in case anyone missed my reply to mummy's comment last week, in Canada we can write $1K off our federal income tax for AC installation due to medical reasons, that is prescribed by a doctor.

[supermum_ms]

I live in Australia so whilst most of you are heading into summer heat, we are heading into winter cold, I have problems with both. The cold is a problem because my immune system severely over reacts to the drop in temperature. In the colder months it looks like I have rheumatoid arthritis because the small joints (fingers, toes etc) and large joints (knees, elbows, hips etc) swell, harden and twist.......oh and its really really painful but it only happens in winter! The joints it affects has progressed as i've got older, and for many years now, cold has been synonymous with pain. The tremors changed that to a newer level of shoot me now ;o) so i'm sure you'll get why the warmer months are still my favourite.

I can't say when heat started to be a problem too, though it would be well over a decade ago that I started to notice the connection of heat equalling fatigue. Its kind of ironic when I think about it, I totally understood the hot bath test years before i knew anything about MS. I stopped doing spas, hot tubs, saunas etc and avoided using a hair dryer or the iron because of how heavy my arm would get, though i didn't know why, just that the heat brought on muscle fatigue or can't keep your eyes open sleepiness.

Cold drinks have never done much for me, I run cold water over my lower arms, stick my feet in cold water, run cold water over my head and often wet my hair. It seems to work the same way covering peripherals makes you warmer, cooling peripherals keeps me cooler. lol well that's my theory and it does help but I still can't function without an air-conditioner. I was reminded of how much i need my air-conditioner, during our 10 day heat wave and it went on the fritz, all my tricks didn't do diddley squat in that type of round the clock oppressive heat.  

DH had some understanding of what over heating does to me, though he didn't really get it but coming home to see exactly what that heat wave was doing to me, changed his understanding and the worse I got the more it amplified his protective and I must fix it persona. lol i think he gets it now ;D

cheers..........JJ

          

[debgen]

I definately  have heat intolerance but like Kyle and Tracy, I am much more effected by humidity. I actually consider humidity to be my kryptonite!  Last summer  I needed to spend 2 separate weeks in south Forida where it was extremely hot an humid. It sent my body into such a major relapse that I am just beginning to slightly recover from. :(

Now that summer is approaching, I will do all I can to keep my body core cool.
I really try to limit the time I spend outside in hot, humid weather. I keep the central air conditioning on in my house 24/7. I swim in my pool every day which is great excersise and also cools my whole body down.

Deb

[Skinnyninja77]

Recently been diagnosed with MS and i find when i have a very warm not hot shower afetrwards i have a tingling sensation in my left fingers and left toes..

Not sure how i will be with hot weather as in the UK we are just coming in to summer..so it will be interesting..

But i do notice that i can't tolerate a hot shower any more and after i have done an hour of exercise i find that my left side feels weaker than it used to.

[sllowe]

Excellent techniques!

I really don't know if I have it to the extent of others.
But, it does zap my energy - especially the humidity. Initially, I'd just go inside for some airconditioning, but found that the return to the heat makes me completely worse (where I'd experience spasms like jumping in my legs).  

So, I don't do that anymore. I try to adjust to it - and stay in it. In the summer is keep a plastic water bottle with me when I know I'm going to be out in it long periods. The cool mist helps me alot. As does the cold water (someone mentioned that too). It cools my core.  I may go into the shade for a few to cool down instead of seeking a drastic temperature change inside.  

Any other contributors?

[Deedle777]

I have it bad.  Even walking or any activity when it's not hot outside raises my core body temp and causes me to become immobile (I am normally able to walk unaided).  It happens very quickly even if the sun is just on my back for a short period of time.  My vision goes blurry, then dim and my legs go limp, I have to sit or lay down and I become so confused I can't gather words to speak.  This is a problem because I can't explain to those around me what is happening and have such little warning.  I once had a partial seizure from the sun being on my back though my legs were in a pool and I felt cool and comfortable.  I have found that in an emergency situation like this, I pour cold water over my trunk/core and that seems to speed up the recovery process.  If I'm out, at that point I don't care if I'm dripping wet!  I avoid being in these situations at all costs, but I have still been caught off guard at times because it happens so quickly and it doesn't have to be hot outside.  You can only imagine how I have to avoid being outdoors when the weather is hot.

[Jacksmom516]

I too find my intolerance is to humidity rather than the heat -  I vacationed in St Martin and was worried how I would handle it.  Sat on the beach every day at least 4 hours of it in the sun and no issues -  I live in Maryland and we too are very humid -  Last summer we had several weeks where it was only 80 degrees but between 90 and 100% humidity.  My legs were worthless.  My foot drop in increased and no matter of cooling off helped -  just had to wait out the humidity.

Tracy

[kwarendorf]

I tend to differ with your substitute neuro about heat intolerance having to be present at the onset. I've had MS for 22 years and my heat intolerance has developed over the last 2.

Prior to that I had about the same level of heat intolerance as anyone. If I got hot, I got hot. The changes to my vision and control of my left leg, when hot, are relatively new symptoms.

Kyle

[immisceo]

Thanks Dennis. Such good information and insight! That puts to bed that little fantasy of mine. But now I can be perhaps a bit smarter about the situations I put myself in instead of having a (perhaps misunderstood) fallacy that I was heat invincible knocking around in my noggin.

Funny; as I settle into my third year of this, I'm growing a lot more confident and prudent about the way I read signs from my body. The first year I attributed EVERYTHING to MS. Second year (because I'd had no relapses and *no one* can maintain that level of hyper-vigilance indefinitely) I attribute NOTHING to MS. My little denial phase.

Year three is all about becoming smarter about the amount of proportionate time I invest in monitoring myself and my body. I've finally formed a MAYBE pile and (hope) I'm growing a bit savvier about what is or isn't of note. Hearing you say it wasn't an issue from the get-go helps me refine that pile and hones my sub-conscious MS watch-dog. Thanks again, Dennis!

[wendya432]

Not diagnosed, but MS or whatever else, heat definitely makes things worse.  I take my shower too hot and I'm seeing double, shaking all over, legs feel like jello with lead, etc.  

A few things have helped so far.  When I get overheated inside and it's cold out, I can just step outside for a bit.  Like, too hot of a shower, too hot from exercise or getting too active cleaning the house, etc.  As long as I don't wait too terribly long, it helps.

Another thing that helps is drinking ice water.  Showers are the bane of my existence.  Too cool and it feels cold to my skin in areas my nerves are all out of whack, and if I let me toes get too cold my Raynaud's acts up.  Too hot and we all know how that goes.  So I keep a glass of ice water right outside the bathroom so that as soon as I'm done I sit down and drink my ice water.  I also can't leave my hair wrapped up turban style in my towel like I used to while I get dressed and do my make up.  It almost locks the heat in.  

I guess the ice water must cool me down from the inside.

But, I have noticed that if I let myself get too hot for too long.  Or even just a little hot for too long, like doing 45 minutes of exercise or heavy duty house cleaning where i"m really getting my heartrate up, then even after cooling down I feel awful.  It takes a nap and than just taking it easy the rest of the day.  

[EJNILB]

I'm not sure if it's proper for me to chime in seeing I haven't been diagnosed but I am finishing up a bout of ON and boy does that eye get blurry when I exercise. That is what ultimately got me the referral from the optometrist to the neuro-optomologist. I described to him how when my body temperature went up my vision went down. He knew right away. I notice it less now, however, as the eye has improved.

[Sailorsong]

I never knew the term for heat intolerance but boy do I have it. I am bothered by heat year round.  

I have tried the ICE PACK type of vest but I can't tolerate the cold from it. I'm in the process of trying to find a good PHASE CHANGE type of vest to see if it will help me.  Since it only goes down to 58 degrees I don't think I'll have a problem of it being TOO cold.

I didn't developed the heat intolerance problem until about 10 - 12 years after my MS started. And it has gotten progressively worse over the years. Hopefully it won't get any worse as I'm already at the point that anytime I am exposed to temperatures over about 73 my symptoms start to go crazy.

So how do I deal with the heat?

First off I keep my bedroom at 60 degrees year round. Yes even in the winter I have the AC in my bedroom running. That way if the heat in my home starts to get to me I have a place to cool off quickly.

I also keep a fan running that blows on me while at my computer in the living room. You would be surprised at how much a desktop computer generates while it is on. Without the fan the area near my computer quickly raises to over 75 while the rest of the room is only 70.

Sleeping has been the worst time for me as I don't wake up if I get too warm. Normally your body temperature drops when you sleep, but not me. Mine goes up. So that 60 degree bedroom comes in handy. To get the real effect of the cold bedroom I sleep under a very light blanket like they give you in an ER if you are cold. I wear nothing to bed and keep the area from my knees down to my feet uncovered. That way the excess heat in my body is being directed to my legs and feet where the cold air cools me off.

Dennis

[immisceo]

Thanks so much for posting on this topic, especially with such a well-written question. I'd totally forgotten the proper medical term and never learned about its namesake!

I did indeed see your fetching cooling vest Kyle! So interesting about the hot versus hot and humid thing. Ireland? Humid. Sicily? Hot. So I've not had the double whammy yet, unless this thing was percolating far longer than I realise.

My specific angle on this is perhaps a little unexpected. Because I'm on a drug study, I have a neurological exam quarterly. Last autumn the prof was at ECTRIMS, so a colleague stepped in.

I suppose I got out my usual 'auto-pilot' for the exam and asked this other neurologist about Uhthoff's as I've never experienced it myself. This didn't compute to me as it seemed like everyone had it to some extent.

I will not pretend to recall his words verbatim, but my strong recollection was he indicated that heat intolerance tends to be there from the beginning if it's something you're going to have. If not, it doesn't tend to show up in future.

Of course, this doesn't strike me as likely, given the nature of the disease process. I keep forgetting to bring it up to my regular neurologist for clarification! I have my notebook ready for my next exam, but that's a couple of month's off yet.

Have any of you heard anything like that?  I do feel kind of weird about not ever experiencing this classic symptom/collection of worsening old symptoms. Perhaps Kyle's on to something there with it being a bit climate-specific and I've just lucked out there.