Favorite Product: Ginger Anything

Several years ago I was put on a months-long course of an antibiotic known to be especially hard on the stomach.  Within a few days nausea became my constant and very unwelcome companion.  The prospect of months of queasiness was completely unappealing but looked pretty inevitable until a good friend bought me a giant box of ginger candies (thanks again, Rachel!).  Some studies have shown that ginger reduces nausea (see here or here for literature reviews), and it definitely works for me.

My course of antibiotics is long over, but my migraines are often accompanied by nausea, so ginger still helps.  My go-to sources are ginger tea and ginger candy, but I also cook with fresh or powdered ginger, drink ginger ale, and am open to pretty much anything else made with real ginger.

Some of my favorite gingery treats (I have not been compensated in any way for mentioning these brands or products; I just like them):

If you have any other gingery product suggestions, or other anti-nausea recommendations, feel free to leave them in the comments for me and for other readers!

Please remember that this post is the opinion of the author and should not replace actual medical advice or attention.

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Going Gluten Free

Several years ago I learned that celiac disease can cause migraines, and can present without gastrointestinal issues.  So I asked my neurologist to consider celiac disease as a possible cause, and he agreed to order a blood test to check for characteristic antibodies.  It came back negative.  I didn’t know much about celiac disease at the time; specifically, I didn’t know that the blood tests for celiac have a high false negative rate.  So I assumed that the celiac disease had been tested and discarded, and I should look elsewhere for an explanation for my migraines.  This was a mistake.  It turns out that about 10% of celiac sufferers are antibody-negative.  Further, gluten-intolerance (which is separate from celiac disease, and will also yield a negative antibody result) can also cause chronic migraines.  I had dismissed a promising treatment option on the basis of an imperfect test.

When I learned this, I decided to go gluten-free (GF) and see if I improved at all.  The catch is that it can take six months on a GF diet to see results (although most people see a difference sooner, some within days).  Guess who took five months and three weeks to notice an improvement?  (Sadly it did not make me feel completely better, but I’ll take what I can get!)

Keeping to a GF diet is not so hard when I eat in – there are lots of restricted foods, but lots of good alternatives.  The toughest part is eating out – many servers at restaurants don’t understand which of their foods contain gluten, and many restaurants don’t have policies in place to prevent cross-contamination.  But it is doable, and it is definitely worth some sacrifices to feel better.   And when I mess up and accidentally eat gluten, the way it makes me feel reminds me why I do this.

In future posts I’ll give advice on maintaining a gluten-free diet, secret sources of gluten to look out for, and favorite GF products.  If you are considering going GF, try and stick with it for a while.  The results might not be immediate, but if you do see them, they are so worth it.

Please remember that this post is the opinion of the author and should not be replaced for actual medical advice or attention.  Please learn more about celiac disease here and more about gluten here.  Lacuna Loft supports healthy eating whether gluten-filled or gluten-free!  Find what works best for you!

Favorite Product: Hydrocolloid Bandages

Hydrocolloid bandages may be my favorite non-prescription medical supply.   They are basically bandaids* on steroids.  Normal adhesive bandages have some kind of fabric pad stuck to a larger strip of adhesive tape.  Hydrocolloid bandages are a uniform, soft, thick, adhesive polymer and protein matrix, but I don’t really care what they are made of, I care how they work: like magic.

These bandages can be cut to size (even for very small areas, like 1 square centimeter).  They are latex-free (yes!).  They keep the wound fully covered, keep edges in place, and keep things moist but not wet – perfect for speeding up healing.  You can leave them on in the shower.  If you use larger pieces they maintain pressure, so they are good for areas which might scar (the pressure can help reduce scarring and soften existing scars); they’re not as good for this as scar treatment bandages, but they do in a pinch.  I use them for cuts, scrapes, small wounds, and acne lesions, but they are also good at keeping nasogastric tubes (and presumably other tubes) in place without irritating the skin like a lot of medical tapes do, and they are used to treat bedsores.  Don’t use them for very serious, deep wounds, or burns, or anything you wouldn’t use a regular bandaid on.

Most bandage/first-aid brands, including store brands, carry hydrocolloid bandages, in stores they are always in the bandaid section (and are sometimes sold as blister bandages).  I always have some on hand.

* “Band-Aid” is a registered trademark; I am using “bandaid” here to refer generically to that kind of adhesive bandage.

** while some links are affiliate, all ideas and opinions are those of the author

Stay Comfortable And Warm During Treatments And Tests

I have previously talked about how to dress warmly for a regular day.  A day at or in the hospital imposes additional requirements, however.  Depending on what tests or treatments are being done, you may:

  • need to ensure easy access to certain blood vessels or to catheters
  • have restrictions on wearing metals
  • need to dress and undress repeatedly
  • need to leave certain body parts completely uncovered (or even covered in ice packs)
  • have to stay in one position for a long period of time
  • have especially sensitive skin

So layering fleece tights, long underwear, a wool sweater, and a down jacket may not be feasible.  Instead, try the following.  Wear loose, comfortable layers which can easily be taken on and off, with sleeves and pant legs that can be pushed up.  Avoid anything binding or with seams that will cause irritation if you put pressure on them for a long time. Consider athletic clothing, lounge wear, or yoga clothes  – they are designed for comfort, and finding options without metal fasteners is easy.

Several companies manufacture sweatshirts and sweatpants with zippers installed specifically to allow access to lines or ports.  Searching for “chemotherapy clothing” or “dialysis clothing” online will bring up options.  If you prefer non-specialty clothing, tearaway or breakaway pants can be unsnapped to allow access to femoral lines, while button-down and v-neck shirts work well for central and PICC lines.  If you may need to bare your arms, layer a sleeveless or short-sleeved shirt under a looser long-sleeved top like Mallory does for her CT scans, so you don’t have to take clothes off to have your blood pressure taken or an IV put in.

For women, a pullover sports bra or shelf bra will eliminate metal and be comfortable even if you have to spend a long time in one position.

Finally, don’t forget the little things, particularly if they can easily be put on or taken off to fine-tune your comfort level.  There is an enormous difference between a cheap, thin pair of socks and a warm one.  Leg-warmers can be layered underneath pants for extra cosiness, while scarves (like LL’s infinity scarves, which won’t slip off or trail on the ground), hats, shawls, and even slippers can add the bit of warmth that takes you from chilly to comfy.

Mistakes I Made While Finishing My Thesis

Finishing a PhD while suffering from chronic migraines is not easy.  Unfortunately, I made it even harder on myself by not reevaluating my plan and priorities on a regular basis.

I had suffered from occasional migraines since my teens, but they had never been majorly disruptive.  All that changed in the fall of 2009.  I had ABD (All But Dissertation) status in my doctoral program, and I was finishing my thesis while working as a post-doctoral researcher.   When my migraines started getting bad, I put the thesis on the back-burner, choosing to focus my limited energy and time on my new position.  When they got even worse, I left my post-doc and channeled all my energies into getting better.  My plan was to eliminate much of my daily stressors, get my headaches under control, finish my thesis, and get another academic position, in that order.  I figured this would take six to nine months, maybe a year if I was unlucky.  During that time, I thought of curing my migraines as my full-time job, my only job.

I suffered through some unpleasant and ineffective treatments.  Then I suffered through some more.  I tried a bunch of different diets.  I moved to another city for a few months, to see if maybe my location was playing a role.  I saw more and more specialists, and  ran through nearly the entire set of known pharmaceutical migraine treatments.  A few things helped a bit, but overall I made little progress.  And in all this time I never re-evaluated my plan to keep my thesis near the bottom of my priority list: my job was to get healthy, and my thesis could wait.

But my thesis didn’t just wait – it hung over my head.  The fact that I wasn’t done with my degree became a bigger and bigger source of stress, and probably contributed to my migraines.  And yet I remained doggedly committed to my plan: get better first, get my life back on track second.

Some part of me certainly knew all along that this was not the right approach, but it took a wake-up call from a friend for me to recognize that my priorities and my plan were out of whack: it was unhealthy to put my entire life on hold, indefinitely, for my illness.  I needed to find a way to keep moving forward (academically, professionally, and personally) despite my migraines.  So I did.  I didn’t stop working on my migraines, but I started working on my thesis again.  I worked on it when I was feeling well, or mostly well, or just well enough.  I finished my degree last year, while still suffering from migraines.

In retrospect, I made two major mistakes.  The first was stopping important elements of my life, when I should have slowed them down, instead.  And the second was failing to reexamine my decisions, even as more and more time passed.  If I had taken some time every few months to figure out whether my plan was working for me, I wouldn’t have followed the wrong one for so long.

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Dressing To Stay Warm

As a human I am ostensibly warm-blooded, but I sometimes have my doubts.  I feel cold most of the time, and this is amplified when I have a migraine,  so I have become an expert at dressing to fight the cold.  Here are some tips on dressing to stay warm, in case your illness,  your treatment, your hair loss, or your life in the Yukon are making you cold.  Note: Because of additional restrictions, such as keeping ports accessible, we will cover dressing warmly for chemotherapy sessions in a later post.

Air – as long as it isn’t moving – is an excellent insulator (this is what lies behind the incredibly cool Leidenfrost effect).  This is how hair and fur mainly work: they trap air and keep an insulating layer next to the skin.  Much of the heat generated by the body is retained by the cushion of still air held against the body.  If you are looking to dress to stay warm, you should use materials and techniques that mimic this – that means dressing in layers, using fabrics that trap air, and covering up as much skin as possible.  My go-to fabrics are wool, silk, flannel, down, and synthetics designed for warmth, like polar fleece.

  • Wool can irritate sensitive skin, so I either use it as an outer layer, or stick to products from companies like SmartWool, which treat their wool to reduce itchiness (and to make it machine-washable).   Wool is especially well-suited for socks, hats, sweaters, and coats.
  • Silk is almost guaranteed not to irritate your skin, and it is breathable, so it’s a great base layer.  I like long silk underwear under my regular clothes, silk sock liners, and silk/wool-blend sweaters.
  • Flannel is extremely cosy.  At night I double up – I wear flannel pajamas and use flannel sheets on my bed.  I can’t get away with this during the day, so instead I buy flannel shirts, and flannel-lined pants and jackets.
  • Down might be my favorite material for warmth; I love my down winter coat and my comforter.  If you’re at home, I strongly recommend a down robe.  If you need to be out, a down vest will keep you toasty while still counting as normal clothes.
  • Fleece is lightweight and thin, so I like it for layers and linings – fleece-lined wool hats or a fleece jacket under my down coat.  The downside is that it isn’t very breathable, so sweating can become an issue.

Dressing in layers and covering up as much as you can will help trap even more air, and will also let you adjust your warmth level as you need to.  You probably can’t get away with wearing a balaclava to class, or wearing ski gloves in the office, but you should be able to pull off a scarf or turtleneck, a snug cap, and fingerless gloves or wrist-warmers.

Hiking and sporting goods stores are great sources for warm clothing, and a key phrase to look for is “performance apparel”.  If an undershirt is designed to keep you warm while camping in Minnesota in February, it will probably help to keep you comfortable when chemo or a migraine steals all your body heat.

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Welcome Jane!, Introduction – I’m still myself

Lacuna Loft is excited to start introducing some guest bloggers!  These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft.  Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit.  Without further ado, here is Jane!

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My name is Jane, and I am a migraineur – a sufferer of migraines.  From a practical point of view, my migraines have put my career on hold, disrupted my social life, and constricted my world.  From a more philosophical one, they have challenged my sense of identity.  Am I an academic if I haven’t worked in three years?  Am I a traveler and adventurer despite being frequently homebound?  If I define myself by how I spend my time, and by what I do, then I am a migraineur, and an expert one at that.  My headaches are essentially a full-time job.

But I don’t want my disease to be my identity.  I do not “do” migraines, at least not voluntarily; this isn’t a choice I have made or a life I have pursued.  So let me introduce myself again.  My name is Jane, and I am an engineer.  I am a writer.  I am a thinker and a dreamer, a reader and a dog-walker, a novice runner and enthusiast for hand-written letters.  I am an occasional traveler, a lover of silly jokes, and a blogger at Lacuna Loft.

According to 19th century quackery, my migraines are strongly linked to the locution area of my brain.
According to 19th century quackery, my migraines are strongly linked to the locution area of my brain.

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