The Frustrations Of Trigeminal Neuropathy

Today's post from migrainemantras.wordpress.com (see link below) is a very useful and personal look at a form of neuropathy that you've possibly heard of but aren't sure what it is. Trigeminal neuropathy concerns damaged nerves in the face and can be excruciatingly painful. Just like other forms of neuropathy, it can differ in symptoms and intensity from one person to the next and is as frustrating for the patient as other forms of neuropathy too. Very often, they are misdiagnosed but even when the diagnosis is conclusive, it remains a nerve disease over which so little is known. Therefore, again like other nerve damage patients, they're put onto a climbing ladder of medications in the hope that the symptoms will be lessened - those medications will be familiar to most people living with neuropathy. Outwardly Trigeminal neuropathy patients may look perfectly normal (recognisable eh!) and are met with far less sympathy than their pain deserves. You van safely say that patients with Trigeminal neuropathy often experience symptoms far worse than you can imagine if you don't have it. This article helps us understand the condition a little better but perhaps more important, it enables us to identify with the frustrations that patients feel on a daily basis.

What is Trigeminal Neuropathy?
September 27, 2017  By Krystina –

Trigeminal Neuropathy (often referred to as Trigeminal Neuropathic Pain) is a term that describes a condition whereby the nerves are somehow damaged in the face.

Easily confused with Trigeminal Neuralgia, (TN) or ‘Suicide Disease’, the main difference between the two conditions is that with Trigeminal Neuropathy, the nerves are actually damaged.

In Trigeminal Neuralgia often the cause is pressure from a nearby artery upon the Trigeminal nerve, (a cranial nerve that supplies sensation and motor function to the face) which causes restriction and may result in symptoms such as intense pain, needle like sensation, burning or numbness (to name a few). Those living Trigeminal Neuralgia or ‘Suicide Disease’ may experience intermittent symptoms and remission, however those living with Trigeminal Neuropathy live with their symptoms constantly.

In Trigeminal Neuropathy, symptoms can vary person to person, depending on where and how the damage has occurred (i.e; surgery, infection or contributing disease). Those with Trigeminal Neuropathy can suffer unilateral (on one side), bilateral (on both sides) or localized symptoms in the face, including;

Paraesthesia – burning, itching, tingling, and pricking.
Dysaesthesia – abnormal, unpleasant sensation when touched.
Hyperaesthesia – increased sensitivity.
Chronic deep aching and Trigeminal headache (brain-freeze).

Another difference between Trigeminal Neuralgia and Trigeminal Neuropathy is that there are no current successful treatment options for sufferers of Trigeminal Neuropathy.

Bummer.


(Above: A diagram of the trigeminal nerve in the head and face, via Trigeminal Neuralgia Association UK.)

As a sufferer for over ten years now, I was almost excited to get a diagnosis, finally. To find out whether it was what I thought it was. A sense of accomplishment filled me initially. I felt I had achieved a huge obstacle in what the hell was wrong; we celebrated, that finally we could have a plan of action. But somehow, having a solid, cemented knowledge of my condition sent me into despair as I realised there are few support groups for the unfortunate sufferers of Trigeminal Neuralgia. I realised that there were even fewer for sufferers Trigeminal Neuropathy — that would be none, zero, ziltch.

I have no frame of reference for what is wrong with me, apart from the things I have learned, and the people I have met along the way.

It is surprising how much a small thing such as a kind glance can change your outlook for the day. As anyone in chronic pain will know, it is difficult to control your outlook on your own, sometimes you need a little boost.

After spending over ten years researching, meeting professionals, and reaching out to others, I have found that there is a lot of confusion as to what Trigeminal Neuropathy is. With doctors and researchers arguing to move away from using ‘Atypical TN,’ or ‘Atypical Facial Pain’ as a diagnosis, a recent change in the classification of different facial pain disorders means getting a diagnosis can be a long and disheartening process.

As there’s very little information on Trigeminal neuropathic pain, I’ll tell you my diagnosis story, which might reassure folks reading this, that you are definitely not alone.

Back in 2006 I had bilateral surgery on my jaw, which involved moving both my upper (maxilla) and lower (mandible) jaw. Following a post herpetic infection and follow up surgery I remained in pain, and for six years along the road of appointments I walked.

I thought I was going mad, just as I did each visit with a consultant prior to my diagnosis. I thought I was exaggerating, making it up. Was it all in my head?

When providing proof of my swollen face in photographs didn’t spark any theories (or interest) with my surgeons, I definitely thought I had lost what sanity I had left. It wasn’t until a someone suggested I make an appointment with a top neurologist that things started to make sense.

He explained that I wasn’t crazy, (much to my relief) that my nerve pain was real. That the swelling was due to my overactive nerves, and that I would benefit from meeting a Professor of Neuroscience at the Walton Centre.

I got an appointment with the Professor of Neuroscience and waited.

The relief that I wasn’t crazy was astounding. Finally I had a valid explanation, or at the very least an acknowledgement that something wasn’t right.

When I headed to the Walton Centre I was awfully nervous, yet excited to finally get some results. I already had an idea of what it might be, I had found a condition called ‘Trigeminal Neuralgia’ or ‘Suicide Disease,’ and its sufferers seemed to have all of the symptoms I had. I made myself aware of possible outcomes, preparing myself for the possibility of more surgery, medication, or a laugh out of the office.

When I asked about Trigeminal Neuralgia, he said, ‘No, your prognosis is far worse.’

I wasn’t sure I had heard him right. I didn’t hear what was said for the following few minutes as I kept running what he had said though my mind.

Far worse than ‘Suicide Disease?’ Ha! What? He definitely cannot have just said that, because that sort of dialogue only happens in soft focus day time dramas.

I dipped back in as he explained that, ‘none of the treatment options for that condition are available to you.’

I think that means you need a password? Or to be in a special club?

We left feeling astounded. We had waited so long for answers, and now we had them, what were they again? What is the answer to this equation?

Medication, and lots of it.

Over the years I’ve tried many different drugs, from Pregabalin and Gabapentin, to Tramadol and Zamadol, Duloxetine and Amytripiline, to Buprenorphine and straight up Morphine.

I think the awkward thing about my situation is that with a condition so rare, outside of a neurologist’s office nobody knows what to do. Hell, I don’t think the neurologists know what to do, really. Every single time I meet a new practitioner, or indeed revisit the same one, they mix up my condition with Trigeminal Neuralgia and we start our tango again.

I found myself telling GPs what to do, what will work, giving them advice on the next move. When the medication didn’t work, they would increase the dose.

I found the drugs didn’t work for the pain, unless you count sleeping as a remedy. They knocked me out, made me feel hazy, unsure, and very forgetful. I thought it unfair in the workplace; explaining, ‘I’m a little out of it,’ isn’t a reliable employee. I wouldn’t have been impressed.

The medication made concentrating difficult, stringing a sentence together on paper near impossible. Not to mention the long-term damage that can be caused by these drugs; depression, liver damage, withdrawal, and more.

I decided to stop my medications. I do believe in mind over matter, and I wanted to throw myself into my studies, and things that I enjoy: music, singing, and being coherent. I did this for a while, a very difficult while, and then it seemed to get harder.

I guess I should discuss the varying sensations that us terminal trigeminal sufferers feel.

Well to start, there’s the shooting, or electric shock-like pains that take us by surprise. Then there’s the ‘thread nerves’ as one of my surgeons explained it. These sensations feel like a dry thread is being repeatedly pulled underneath your skin (one of the most unpleasant in my opinion).

We also have the incessant itching and burning feelings that can last for days. These particular sensations persist to the point of making me feel sick (imagine heatstroke). On the other hand, we have the lovely brain freeze that occurs when we breathe cold air, or our skin gets slightly cool. Migraines, rosacea, stiffness, hives and a bout of geographic tongue to name just a few symptoms and side effects that actually have names.

Then of course there’s the aching, and flat out painful interludes that can be a result or a precursor to all of the above. Perhaps if we didn’t have to use our faces in everyday situations, we might avoid much of this discomfort.

It looks like we’re not doing too well, are we?

However if you have any of these symptoms, and you are reading this, I salute you.

You are a hard ass.

For more information and help on Trigeminal Neuropathy and facial pain:

Currently the only place for patient information on Trigeminal Neuropathy is The Facial Pain Association.

‘Striking Back – The Trigeminal Neuralgia and Facial Pain Handbook’ contains limited information for Trigeminal Neuropathy sufferers, but a wealth of information for those with Trigeminal Neuralgia.

The Trigeminal Neuralgia Association

Living With Trigeminal Neuralgia support

… and you can always drop me a line.

https://migrainemantras.wordpress.com/2017/09/27/what-is-trigeminal-neuropathy/