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***

Is the Flare Finished?

Alright, I am slowly emerging from my flare.  Thankfully!  I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable. 

The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot.  Yes, the flu shot.  Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease.

I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse.  Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain.  I had the good fortune of several relatively healthy months, so that I had almost forgot how severe and debilitating constant trigeminal nerve pain can be.  Well, that changed fast. Pain medication wouldn't even touch it.  My eyes became so dry and painful that I had to be put on steroid eye drops.  I stopped being able to read or use a computer all together and went back into survival mode.

Now, being the stubborn Gal that I am, I thought to myself at the time, I can manage this flare myself.  I won't contact my rheumatologist, there isn't much anyone can do for me.  But when the pain started to reach an 8 everyday and I couldn't leave my home, I changed my mind.  Well to be honest, my husband had to partially convince me that it was time to seek medical help.

I was hesitant to even mention the timing of the flu shot with my doctor. I expected my rheumatologist to think that I was nuts since I am so used to doctors touting the important benefits of the shot--particularly for someone who has so many health issues.  But I was surprised. He told me that vaccinations do have the potential to cause activation of autoimmune flares. He said this doesn't mean that you shouldn't get vaccines, or even avoid the flu shot, but there are risks.  (Note: This is in part why I have so much respect for my rheumatologist, he understands that there can be exceptions to the general medical wisdom.)

Then I talked to my eye doctor, who specializes in autoimmune disease. He also had a patient like me who went into a serious flare after getting the shot.  At this point, I was at least sure I was not the only patient who had this happen.  It was helpful to know, but also convinced me to write this post in case others have had a similar issues--however unusual it might be.

I want to be clear I'm not making any recommendation or generalization for other Sjöggies or autoimmune patients.  As I've written in the past, I do tend to experience what are often considered the "rare" or "unlikely" side effects from medications and procedures.  

I currently have my fingers double crossed that I'm on the other side of the flare.  I had to have a number of days of steroid infusions followed by a slow taper to get my overactive immune system under control.  As we all know, being on steroids have all sorts of unwanted side effects including lowering your overall immunity.  Not surprisingly, during this winter season where everyone seems to be sick, I came down with a super bad virus that included fever, cold, and stomach upset that left me flat on the couch for another week.  So here I am again, slowly rejoining the world after another autoimmune blip.  I'm hoping and praying that there aren't many of these interruptions in 2014!

A Flare Has Come Around

Well, I've been absent for a bit with good reason.  It's something many of you are familiar with-- A flare.  

As one of my doctors says " for you flares always starts with the eyes".  My eyes become extra extra dry and uncomfortable (As if they weren't dry enough already).  And then the cascade of other symptoms tend to follow.  The neurological are really the most disabling for me because they are just so darn painful.  Once my trigeminal nerve and eyes are activated, (similar to the article discussed in my last post), reading and writing become a real challenge.  I have to limit my time "using my eyes" because it can only exacerbate the neurological pain.  I enter into prevention mode.  I am always calculating what can I do to prevent my symptoms from getting worse and to give myself some relief.  Because once the pain reaches an 8 or even a 10, it's very hard to get it back to being manageable.  

Keeping my eyes extra moist is one of my strategies against neuropathic pain,and I find the dryness at night to be a particular problem.  Local inflammation of the cornea can stimulate the trigeminal nerve so keeping the surface of my eye as comfortable as possible can at least help minimize my pain.  I've discovered a couple new products that have been somewhat helpful.  

The first, is called Niteeye The Dry Eye Comforter.  It's a disposable bubble bandage that I can stick over my eyes for bedtime.  It creates an airtight moisture chamber so that none of the minimal tears that my eyes produce can escape.  When I take them off in the morning, I can actually see a few small drops of my tears on the clear lens.  I still use my regular night time gel and then put the dry eye comforter on.  They are a bit difficult to order and  the least expensive way is to call the manufacturer directly and order a box as explained on the Dry Eye Shop website. The negative, of course, is that they disposable so the cost can add up over time. I do only tend to use them when my symptoms are particularly bad. 

Dry Eye Comforter

I've also tried the Quartz Nighttime Sleep Shield.  These I've had less success with mostly because I tend to rip the goggles off in my sleep.  That means I only have the eye protection they provide for about half the night.  My head is also pretty small so unless I adjust the band to be very tight, they can become loose easily. I was actually able to purchase these at a my physician's dry eye shop for about half the price listed online.  I've heard that many have had good success with Tranquil Eyes Goggles made by the same company.  These provide the benefit of having moisture pads that can be inserted and in the more expensive models silicone beads that can be made hot or cold depending on what works best for your symptoms.  I just haven't tried them yet. 

Quartz Nighttime Sleep Shield

They both make me look an alien when going to sleep at night, but this is the least of my concerns. Less pain and discomfort is my goal right now.  I'm going to try to keep writing when my health allows and they might just have to be shorter posts.  It will be a bit of an experiment, but so is this whole autoimmune journey. 

What are your go to products during flares that provide some comfort and relief?

My Story of Cranial Neuropathies and Sjogren’s

I have put off writing this blog post a number of times.  To be honest, it's not something that I like to think about, a luxury I sometimes have when my symptoms are not particularly severe. But it is a subject too important for me to continue to put off.  So here goes.

I am one of the unlucky Sjogren’s patients who suffers from significant neuropathies; in my case multiple cranial neuropathies are the particular nemeses. In fact, for me, cranial neuropathies are perhaps the most difficult part of contending with Sjogren's syndrome. They can be exceedingly painful and are one the reasons SS has been so debilitating for me over the last several years.

While I know I am not alone in having these cranial nerve issues, I have also Iearned that, in some respects, I am the exception to the rule. For starters, depending on the study, approximately 30 percent of Sjogren's patients have neurological involvements of some kind. That broad group includes all neuropathies that impact the central, peripheral, and autonomic nervous systems. Multiple cranial neuropathies in particular are a relatively uncommon subset. One estimate places them at just 5% percent of those with neuropathies, which would mean less than 2% of the overall SS population.  (I’m sure others will have seen other numbers, but the point is multiple cranial neuropathies are considered fairly rare with Sjogren’s.)  

However, since at least I know I am not the only one out there with Sjogren's, Lupus, or other autoimmune diseases contending with cranial neuropathies, I thought I would start with some of the basics I have learned over the last few years.  For starters, there are actually 12 cranial nerves. Making things more complicated, some belong to the peripheral nervous system (PNS) and others belong to the central nervous system (CNS). The short version is that these are many of the nerves that are involved in your face, head, eye, and ear. (If you’re interested, greater details on the specific functions of the twelve cranial nerves can be found here.)

With Sjogren’s (and other autoimmune diseases such as MS) the 5^th cranial nerve or the trigeminal nerve is one of the most commonly involved in the disease process.  This nerve has three main branches V1, V2, and V3 impacting the upper, middle, and lower sections of the face as shown below:

Dermatone of Trigeminal Nerve
By Madhero88 via Wikimedia Commons

Patients with trigeminal nerve involvement or trigeminal neuralgia often have severe pain running down the side of their face, lack of feeling, sensations of numbness or general abnormal feeling in their face.  I realize that pain and numbness may sound contradictory, but it will make sense to anyone who has experienced it. Symptoms can be made worse by simple everyday activities that most people don't think about twice such as eating, being outside in the cold or wind, or even just touching the face. Unfortunately, trigeminal neuralgia is an extremely painful condition and can be difficult to control. Doctors recognize it as a condition of its own and often believe it to be untreatable; a terrible thing to hear for those of us who have it.

For me, the trigeminal nerve was the first of my cranial nerves to be affected by the disease.   It started with a change in sensation on the right side of my face such that touching it became uncomfortable. It was as if my face had gone numb and progressively painful at the same time.  Not a good feeling at all.

But that was just the start for me. After the trigeminal nerve, I had other cranial nerves become involved too.  I had problems with the 7^th cranial nerve, which impacted my facial movement and caused hemi-facial spasms.  As a result of its involvement, at times I was unable to move my face or open my eye.  My 8^th cranial nerve, which is responsible for hearing and balance, also joined the dysfunctional nerve party.  I experienced (and at times still do have) extreme ear pain, sensitivity to any sound and vibration, and balance issues.  I was even unable to be in a car or train because the vibrations and bumps of the road caused so much pain.  I was in constant unremitting pain and unable to do basic everyday tasks.  It really left me at my wits end… I could go on, but I am sure you get the idea that my immune system had mounted a full-fledged attack on my cranial nerves.

Now, back to the autoimmune aspect of it, which I hope may help some other patients. All of the nerve/pain issues described occurred before any of the more twenty doctors that I saw during this time diagnosed me with autoimmune disease.  If anything, the pain threw them off. I was told I had a pain syndrome and doctors put me on pain meds. All they did was make me slow-witted and, while they masked the pain at times, they did not make it go away and I kept getting worse. The doctor's response?  You must have a "bad pain syndrome. Take more drugs." This was from some of the most prominent medical centers in the country. 

I know that I am probably not alone in the autoimmune disease community of having had something like this happen.  What I have learned since then is that many doctors, even rheumatologists, are not aware of the possible neurological complications of Sjogren's Syndrome.  And the big and important question of course is why is this the case?  So that is what I’ll try to tackle in a bit more detail in an upcoming post.  Stay tuned.

I realize it's a very tough subject but I would be very interested to hear if any of you have neuropathies related to autoimmune disease. If so, how have they affected your life?

Sources

http://brain.oxfordjournals.org/content/128/11/2518.short

http://www.ncbi.nlm.nih.gov/pubmed/20827117

http://www.hindawi.com/journals/ad/2012/645967/