Thursday, August 29, 2013

My Experiment With MS and Double-AC

As most MS veterans know all too well, summer is the hardest time of the year. The reason is simple enough: MS is heat-reactive*. Even a change of just a few degrees can make a huge difference.

I put that supposition to the test this summer with a different way to beat the heat with a method I'm calling "concentrated air conditioning" or "double-AC." This is when you cool the whole house via central air, but have a secondary unit in one or more rooms to keep those rooms several degrees cooler than the rest of the house.

My husband was the main proponent behind this summer's experiment. I was more than happy to oblige, as I often feel guilty that everyone else in our home has to shiver in order for me to keep my symptoms at a minimum, especially at night. It's always bothered me that my kids had to sleep under heavy blankets in July. Well, with concentrated air conditioning we were able to keep the rest of the house at a reasonable temperature (65-68 degrees) while my bedroom, where the secondary unit is located, could keep me comfortable at a brisk 58-60 degrees.

Now, that doesn't sound like a difference of very many degrees, but it has made a huge difference in my summer experience. I've used less Baclofen, less pain medication (both narcotic and non-narcotic) and suffered less insomnia and less of the crushing summer fatigue that is a hallmark of MS. Nausea was so appreciably lessened, I stopped taking Phenergan for the first time in several summers. I have not suffered a single serious fall or injury, and for the first summer in recent memory, I was not completely reliant on my wheelchair for outdoors excursions. For me, that is a very big win: I got to leave the house with a the summertime! Even my doctor noticed and was pleased.

Now, that isn't to say that this method hasn't helped all symptoms or had its downsides. It naturally did not remove or relieve all heat-reactive symptoms: summer fatigue is still an issue, more frequent muscle spasms and nerve shocks were woefully common. Bladder issues remained unaffected. Optical problems like eye twitches, blurry and double vision were just as problematic as they had been last year. The experiment had no appreciable effect on vertigo, muscle weakness and "nerve burn." Tremors, which are a relatively new symptom for me, became worse and were quite noticeable. And frankly, nothing gets rid of the pain, especially trigeminal neuralgia pain, entirely. Some of that pain came as a result of discovering that placement of the secondary AC unit means everything (location, location, location). Do not position the unit in such a way that it blows air directly on your face. Even something that innocuous can cause a full-blown TN attack. Lesson learned.

The biggest disappointment of the last few months? Being too sick to attend my goddaughter's birthday party for the first time. I was able to see her later in the evening, when it had cooled down somewhat, but I still felt terrible about it.

Additionally, it had the unfortunate side-effect of making me a virtual prisoner in my bedroom, as the difference in symptoms and severity was striking when spending even short amounts of time in other rooms of the house. For example: last night, we has a nice family meal. My husband grilled, while my daughter and I made pasta. By the time the pasta was done, the combination of lower AC temperature and the heat generated from cooking had caused me to feel nauseous, light-headed, dizzy, shaky and my blanca was very precarious. I ended up eating dinner in my bedroom. For the rest of the evening, I had a very noticeable increase in muscle spasms, nerve shocks and the trademark MS symptom "pins and needles" (think about how it feels for your foot to fall asleep, now transfer it to any part of your body and multiply it by a factor of one hundred). It is now past noon on the day after, and I am struggling with nausea, nerve shocks, fatigue, vertigo, muscle pain and a vicious attack of the trigeminal neuralgia (which may or may not be related to last night's culinary adventure).

Naturally, when I began this experiment, I searched for the silver lining of being confined mostly to one room. My closet is in desperate need of re-organization, I am pathetically behind in personal correspondence, and, above all, it would give me some much-needed time to do research and work on my book.

These were all suppositions I made going into this experiment. What I did not anticipate was that keeping cool would not affect the pain-in-the-rump symptom of MS I call MS Fog. That's a blanket statement for all of the meddlesome cognitive issues that MS saddles you with and that naturally get far worse in the summertime. You read a book, only to discover you've been reading the same page over and over again for an hour. Your short-term memory and concentration ability is just shot. Add the Fog to the crushing summer fatigue, and just making plans is exhausting to near-incapacitating levels.

Of all the things I had hoped to accomplish during this experiment, only research actually got done. And to be honest, not as much as I had hoped.

So now that summer is blissfully almost over, and I am enthralled in the Battle Fatigue state (the inevitable end-of-summer condition where the symptoms feel worse than they actually are because you are so very worn out from fighting them for months), what have I learned from this experiment?

First and foremost, I believe it has been a success. The aim was for me to feel better than I did last summer, and without a doubt, I do. This summer has been so much easier, in so many ways, than I had any right to expect. I am pleased that I needed less medication and less medical interventions than I am accustomed to this time of year. I slept better, ate better and felt better. I really enjoyed my birthday (July 31st) for the first time in years.

I've learned a great deal about my MS from this experience. I've discovered that just because it is nice and chilly indoors doesn't mean that higher outdoor temperatures won't cause my MS to react. My husband and father-in-law suspect that this may have something to do with ionization. They are debating a possible future experiment with deionization. It is uncanny how I can always tell when it is hot outside, even if it's chilly enough to make ice cubes in my room. I know from speaking to many others with MS that this is a common experience.

I've also learned that I need to develop some new, Fog-resistant hobbies. I cannot rely on reading (including the Internet), and even moderate chores or projects will most likely be beyond me when temperatures soar. I'm not sure what these hobbies will be, but I look forward to discovering some new and wonderful time-waster.

I have also kept up with my experiment of summers past: if it's over 100 degrees (or likely to be), I check into a hotel and avail myself of the indoor pool and jacuzzi. Not only does it continue to prevent me from getting sicker, but for several days afterwards my legs feel stronger and I have less weakness and spasms. This is now my seventh summer of this practice, and the results continue to be consistent and positive. To say that I am happy about this is an understatement...and the kids enjoy the little adventure.

All in all, I think I will continue with the double-AC experiment next summer. Not only because it has helped me greatly this year, but because I am aware that any experiment (even an experiment of one participant) to be considered successful, it must be capable of being replicated. And the more time I put into it, the more I can improve the method and get the best possible results.

Would I recommend double-MC to other MS Warriors? Well, like everything with MS, just because it works for one person doesn't mean it will be the least bit helpful for another. And there is a noticeable increase in energy bills related to this method that had to be taken into consideration. We purchased a new, energy-efficient model, but it was far from inexpensive to buy or to operate. I also think if you are the sort of person who is susceptible to cabin fever or would consider spending the better part of three months or more in one room to be torture...this is probably not for you.

But even in the midst of the dreaded MS Battle Fatigue, I am confident in and grateful for my husband's diligence (and scientific curiosity) that fueled this experiment and gave me the best summer I have had in more than a decade. I love you, sweetheart!

Stay tuned next summer for Year Two...

*The majority of MS patients have heat-reactive issues. However, some do not. Some even have the opposite, and find that cold exacerbates the disease. And a small minority have both heat and cold reactive multiple sclerosis. As usual, MS is very individual and I speak more to my own experience with the disease rather than MS in general. Please keep this in mind when reading any first-hand account of the illness. In other words: your mileage may vary.

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