Trigeminal Neuralgia and Turtle Fur

From reading the tittle, you might be thinking what do the trigeminal nerves have to do with turtle fur and do turtles even have fur?  But I promise this post is actually about something that I find extremely helpful during these frigid windy months called Turtle Fur.

As I've mentioned in the past, I have cranial nerve involvement as result of Sjögren's and unfortunately my trigeminal nerves have been affected.  Check out my previous post here and the awesome Sjögren's blogger Julia from Reasonably Well has also discussed it here.  

The bottom line is that trigeminal neuralgia is an extremely, extremely painful condition and unfortunately wind or cold touching the face can be a major pain trigger for many who suffer from it. This presents a great challenge for those of us who live climates with frigid and windy winters. For me, this means that in order to go outside in the winter, I need to keep my face protected at all times.  Something like a scarf just doesn't do it because the trigeminal nerve runs down the side of the entire face and has three main branches that also cross the face.  Scarves and even pashminas also don't stay up completely and can easily fall down as I've learned the hard way.  Believe me, I've tried everything.

A couple years ago, I found a product called the Turtle Fur Neck Warmer (pictured below) that has been a saving grace.  It is made from fleece, soft and warm, and feels good on my face.  I find that some materials can also be aggravating to my trigeminal nerves.  The great thing about this product is that it can go up all the way to right below my eyes and actually stays there.  Most other products I tried in the past would usually fall down at some point leaving my face exposed. My other favorite thing about this neck warmer is that it has a double layers of fleece so it's very warm.  

Image Source

Now, turtle fur isn't the only part of my trigeminal nerve protection routine.  I also wear big sunglasses, which shield my dry eyes and the branch of the trigeminal nerve that crosses the eyelid and forehead.  To complete my going outside garb, I wear a hat with side flaps that is lined with a fleece material that covers my forehead completely and adds double protection for my ears, which also have been impacted by Sjögren's (There are plenty of variations of these).  I might not be recognizable when I go out in the winter, but at least I have found a way to go out and be in less pain. 

This faux fur looked particularly protective

Mine is a variation on this lined with fleece

How do you protect yourself in the winter to minimize your autoimmune symptoms?


***Please note I have no relationship with any of the companies mentioned in this or any other post***

Living with Autoimmune Disease: Post-Cold Brain Fog

I am now over my cold, but there were some minor hassles along the way as is often the case when you have autoimmune disease.

The good news is that I am physically better.  Yes, my internist made me come in to make sure that it was nothing bacterial and all my tests were negative.  I got over the cold much faster than usual. It didn't take multiple weeks this time. Instead, I felt better after a week of resting and babying myself.  Maybe I can attribute this to the homemade ginger tea with honey bought directly from a local farm that I drank daily. The cold also did not cause a flare, which was a huge relief.

One side effect that has lingered is brain fog.  I can't say for certain that the virus caused the fog, but the timing makes it seem likely.  The fog is worse in the mornings and it takes me until mid-day if at all to get my brain going.  Things that would usually come naturally to me cognitively are a challenge and my mental capacity feels like it has temporarily diminished.  Things take longer.  For me, each episode of brain fog is slightly different.  It's never fun, but I try to get through it with some tips I keep in mind.

1) Keeping myself engaged.  I am reading and now returning to write.  While it can be frustrating, keeping my mind somewhat active in short segments seems to help.

 2) Light non-strenuous exercise improves my concentration and focus.  I have been taking walks or a short bike ride and feel a bit less foggy afterward.

 3) Coffee. Yes, I know many say to stay away from caffeine during brain fog.  But for me, one cup the morning does seem to help.

 4) Keep my calendar up to date. This is one of those times were trying to remember what appointments I have during the week is not going to work.  I will end up at the wrong location at the wrong time. Yes, that has happened before.

 5) Socializing. Brain Fog does not mean you have to hide yourself from the world. Having to interact with others both distracts me from thinking about the fog, but also forces my brain to work and get rolling.  If I don't feel well enough to meet someone, talking on the phone to friends or family is another good option.

 6) Realistic expectations. This is true for living with autoimmune disease generally.  I am putting things aside that I know that I can't handle right now. Trying to read a dense history book or figure out a complicated health insurance issue might just have to wait another few days.

 7) Focus on the basics.  I ask myself what is completely necessary to get done today.  If I am able to handle more that is great, but if not tomorrow is a new day.  And there is a chance the fog will have lifted by then.

I am certainly annoyed by this no good fogginess, but I am relieved it doesn't seem to coincide with feeling worse physically.  Just excuse any typos or commas out of place for now.  How do you get through foggy periods?