All the Little Extras: Quirks of Trigeminal Neuralgia

When I’m busy on a writing project, particularly if it’s poetry or fiction, one of my favourite things to do is go to a local cafe and spend a couple of hours with a couple of cappucinos and my tablet. Most of my writing time is spent at home, in a quiet room overlooking the feijoa trees and pittosporum shrubs in the back garden. The cat likes to join me, usually slinking under the desk. So a sojourn in a cafe once a week is great – plenty of people to watch and observations and sensations to capture.

We live near the beach, and along this part of the coast is a cornucopia of fab little cafes and restaurants. Each one has some special characteristic that sets it apart from the others. We recently discovered a Hungarian cafe tucked away in a quiet spot off the state highway. It’s got an outdoor seating area next to an unused farmlet, with a very artfully-placed old, green tractor sitting in the field under an equally artfully weeping willow and a view across the town below and out to the island.

extraspin1The coffee was probably the best I’d tasted (and that’s saying something – New Zealand is good at coffee) and it came with a little Hungarian biscuit on the side. It’s the little extras like quirky views and tasty biscuits, that help give a cafe its character.

Which got me thinking about other places we like to go, and what their particular character is. There’s a brewery cafe where you can watch through a window while the beer is being brewed. there’s a cafe in a small coffee-grinding warehouse, where you can watch the beans being ground. Often, it’s the garden or the view that entices us. One of my favourites has a tropical jungle feel to the garden. Our grandkids jump up and down with joy when we take them to the cafe that dishes up a handmade chocolate with every drink.

Lots of lovely little extras.

Little extras aren’t always so lovely. Sometimes they are a total pain in the backside.  With cafes, it might be that the music is too loud. They might be cranking out 80s electro, techno, or new wave synth crap – although at least you can ask them to turn it down, and change the playlist. Or just go to a different cafe.

Chronic illnesses like Trigeminal Neuralgia often come with a shedload of little extras, or autonomic symptoms if you’re talking to your doctor – and none of them have patients jumping up and down with joy.

With chronic illnesses, you can’t ask the doctor for a different body.

The Little Extras:

Trigeminal Neuralgia is a chronic pain condition, affecting the trigeminal nerve in the face. There are two trigeminal nerves, one each side of your face, and three branches to each nerve.

Autonomic symptoms occur on the same side as your TN pain.

Flushed Face

It may not sound like much, when you consider the excruciating pain caused by attacks of Trigeminal Neuralgia, but it can attract some weird looks from strangers when you wander around with one half of your face bright red and the other normal. For many people, the red area will also feel hot and burning to the touch.

Swelling

Sometimes the affected part of the face becomes swollen and puffy

extraspin7Ptosis

This is droopy eyelid –
again, on one side.
The eyelid sags,
but generally the patient
is unaware of it,
unless they notice in the mirror.

For me, it’s often a warning sign
of a pain attack, and I get
my pain management toolkit
ready when my husband
points out my eye is sagging.

Red Eye and Weepy Eye

Medically referred to as conjunctival injection and lacrimation, or tearing. The eye looks blood shot, and leaks tears. Many patients also find their eyeball feels like it is burning.

Eyelid Tic

Sometimes it feels like my eyelid, just at one corner, is fluttering like the wings of a humming bird. Sometimes, it really is.

Rhinorrhea

TN patients often go through a lot of tissues, mopping up the clear liquid running from their nose – but from only one nostril. Rhinorrhea, like all the autonomic symptoms, only happens on the same side of the face as the damaged nerve.

Sometimes, your nose might just feel like it’s running. I’ve lost count of how many times I’ve tried to wipe a non-existent drip from mine. You’d think I’d have learned by now that it’s just the nerve playing up, but it catches me out every time.

Full Ears

You know that sensation when you’re driving up a high hill, or ascending in a plane and your ears need to pop? Yeah, that. Only blowing your nose or sucking a sweet doesn’t relieve it, and is likely to trigger a full on pain attack.

Itchy Ears

Mine is more of a tingle – like those ants crawling – inside the ear canal, but sometimes it stings and itches like a mozzie bite.

Swallowing Difficulty

It might feel like there is something stuck in your throat, like the hair above, or a crumb of food. But no matter how much water you drink to dislodge it, you can’t – it’s just the nerve triggering the sensation.

Cold Sensation

Sometimes people experience extreme pain as a cold sensation. And when I say cold, I mean freezing – as if you’ve rubbed an ice cube into your skin or lain down in the snow.

Numbness

Numbness is sometimes a welcome relief when you deal with constant, extreme pain, but it also causes problems of its own. Remember how difficult it is to drink, eat, talk etc. when you’ve had an injection at the dentist? Some TN patients experience that level of numbness most of the time. When your face is numb, it’s easy to burn your mouth on food and drinks that are still too hot to swallow, or to bite the inside of your cheeks or your tongue – which often leads to mouth ulcers.

extraspin6Bruised Sensation

Even when the nerve
doesn’t seem to be firing off
at an extreme level of pain,
you can often experience
a low level, niggling ache
(or worse)
that has the same
tender sensation
as bruising –

but no bruise to be seen

Pins and Needles

Many TN patients experience prickling sensations like pins and needles, or tingling like ants crawling on their skin

Stray Hair Sensation

Ah, my ‘favourite’ – the hair that isn’t a hair, stuck in the back of my throat or tickling the tip of my nose

Light and Sound Sensitivity

Bright lights or loud, sharp noises trigger anything from setting your teeth on edge, to extreme pain. This is why any cafe playing electro, techno, or new wave synth will have me walking straight out again.

Fatigue

Classic ‘extra’ with most chronic diseases is fatigue – a bone-numbing, muscle-aching, brain-fogging fatigue. It is exhausting, dealing with pain. And often patients don’t sleep well, or enough, at night, which adds to the fatigue levels in the day. It can also play havoc with your ability to concentrate.

 

Remember:
Not every TN patient will experience all these autonomic symptoms. The trigeminal nerve is split into three branches, and if your pain is on the lower branch, along the jaw, you may get the issues with swallowing, but not with nose running or weepy eye.

Not all these symptoms are unique to TN either. Always mention all your symptoms to your doctor. Keeping a diary to record them is a good way of keeping track so you can discuss them without forgetting anything.

extraspin4


 

37 thoughts on “All the Little Extras: Quirks of Trigeminal Neuralgia

  1. Trish, thank you for sharing all the little quirks. Love your positive attitude! I too, suffer from this very odd-ball issue, going on 13 years now. Remember the day it started like it was yesterday. But totally agree, attitude is incredibly important!
    Another charming quirk- ever get the sensation that your face is doing odd things? Like you are sneering, or that your tongue is hanging out, when you really have a neutral face position? It’s the strangest thing!! Like, ‘ummm face? What are you doing?!’ I have to touch my face to give my brain other input to stop the sensation. Oh yes! Fun stuff🙄🤪

    Liked by 1 person

    1. Oh, the shape-shifting face – I sometimes feel like my eyebrows are pointing upwards like triangles and my eyes are wide-open and staring – but look in the mirror and everything appears normal!

      Like

  2. I didn’t realize that TN only affected one side of the face. There are so many symptoms from the small and annoying to the more important and painful. Keeping a diary can be so helpful for your physician. Often we tend to not say anything about the little things unless the doctor asks specific questions. .

    Liked by 1 person

    1. It can be both sides, but one side is more typical. Yes, diaries are great to keep trackof all the details we might otherwise forget to mention

      Like

  3. Hi everyone. My doctor suspects I have TN. I had an MRI which showed no structural issues at fault. I had painful zaps in upper and lower jaw to front right center of mouth. Then swelling and numbness in upper lip area for several days. Another (on call dr) prescribed a steroid which my primary dr said ruined any evidence that could have been found on the mri. I haven’t had pain for several weeks now but always get the runny nose on right side, itching in right ear and teeth/jaw pain on that side that is fleeting.
    Interesting to read your post as it seems very relevant to me.

    Liked by 1 person

    1. Sounds very like TN – I’ve never heard of steroids ‘ruining the evidence’ on an MRI though. Usually MRIs are done to rule out any other issues like tumours etc.

      Like

  4. I had never heard of Trigeminal Neuralgia before, but it sounds like a doozy. I love the word choice “quirks” because it sounds more positive to me even though these “little extras” may still be difficult

    Liked by 1 person

  5. Totally off topic here, but I had no clue that New Zealand was known for their coffee. I always think Hawaii and Columbia. You’ve peaked my interest in coffee from New Zealand now. I have been following your blog and learning about TN for quite some time now, and I am always amazed at how you handle these issues. I’ve been struggling with tendinitis for about 6 weeks, and I find myself self-isolating simply because I’m struggling with basic things like cooking or driving. Yet that pales in comparison to living with something that comes and goes everyday with no respite from it and such a wide variety of symptoms.

    Liked by 1 person

    1. Oh, I might need to rewrite that sentence. We don’t grow coffee here – but we are excellent at roasting and brewing it!
      As to handling it – I just figured out pretty fast that if I didn’t keep positive, then it just made things worse. Using techniques like Mindfulness really helps.

      Like

  6. It is important to talk about it and tell people about it. I am glad I know what it means through you and other chronic pain voices

    Liked by 1 person

  7. The little things are what gets you through the moments when the pain is really high. Thank you so much for adding “little things” of this condition. I don’t know enough about it and this was a great education.

    Liked by 1 person

  8. I’ve never heard of this before, thanks for taking the time to share your story along with information on this. I learned a lot reading this article.

    Liked by 1 person

  9. Thank you for sharing this so openly. Honestly, you can’t know what it’s like to live with trigeminal neuralgia or any other medical condition unless you’ve lived with it, but reading information like this helps us to better understand the different factors that you experience on a regular basis. It’s like a glimpse behind the curtain to help us better understand those around us living with conditions like this.

    Liked by 1 person

  10. I may have said this before but I work for a company in the clinical practice guidelines space and was just having a conversation with a client on Trigeminal Neuralgia and the American Academy of Neurology recommendations around the condition. Strong evidence recommends the use of carbamazepine (anticonvulsants) or oxcarbazepine as you said above. It is really a baffling condition with lots of “extras”. On a side note, I now want coffee.

    Liked by 1 person

    1. Yes, anti-convulsants definitely the best – so far, anyway! Who knows what developments there might be in future medications. Or maybe a little machine that could send pulses to the nerve to retrain it.
      Now I need coffee too!

      Like

  11. One of my best friends has this. They started taking methadone and said the pain started slowly going away. It was so bad for they were getting botox injections monthly before. I don’t know much about TM, but know enough that is a very staggering, painful condition.

    Liked by 1 person

  12. I like your writing style. You’re very good at painting a picture with words. I’m not much of a coffee drinker but I’d like to try some in New Zealand. 🙂

    I’ve never heard of Trigeminal Neuralgia and have learned a lot from your article. Thank you for sharing your experience with this illness.

    Liked by 1 person

  13. OMG Trish. Previous to reading this post, I knew trigeminal neuralgia as being an incurable condition which produced severe and intense pain. Having said that, I had absolutely no idea of all these ‘extra symptoms’ that could exist also. This just makes the condition so much more problematic to deal with.

    Liked by 1 person

      1. You are right on!
        I have many of these symptoms you mentioned and I thought I was thought I was the only one.
        Now I know I am not crazy!
        Thank you for sharing,, especially the symptoms of thinking you have to blow your nose, and feeling like their is a hair on your lip. Drives me nuts lol
        Debbie

        Liked by 1 person

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