Sunday, 9 June 2019

Trigeminal Neuralgia- Face ache and then some.

As with so many of my chronically ill buddies we generally don't have just one illness.
(Why have one when you can have a bumper pack hey!?)
Thankfully though, they generally don't all peak at the same time, (don't even want to think about that) but for me it is quite common to have a few joining in at once.
My constant companions being, of all over pain from my Fibro, open wound feeling from my nerve pain, plus various ME symptoms being my "usual" companions.
So, when one of my lesser ones rears it's ugly head it's generally met with an eye roll and a loud groan.
Tonights joy is Trigeminal neuralgia. For a proper description see link below. ⬇️⬇️⬇️⬇️ (It's a challenge being eloquent during an attack).

There are a few symptoms of this horrible condition.  So far I've actually been "lucky", as it presents for me as a deep aching, burning sensation down one side of my face into jaw.
Thus imagine my surprise when whilst rubbing my poor cheek I got one of the more typical "shock" feelings usually associated with TN.
Oh. My. God. This was a cry out loud, eyes on stilts, moment.
A WHAT THE F@#K WAS THAT!!??? Moment (whilst knowing exactly what it was).

Thinking noooooo I most certainly don't want THIS monster adding to my current TN experience. Believe me this face ache is horrible enough.
It's a bit like after dental work where the anaesthesia is wearing off, so your face is stinging yet numb at the same time along with aching badly from being drilled and having your mouth open for hours but instead of being just one tooth it's them all on one side. There's more to it but as I said, eloquence isn't in my wheelhouse tonight.

Back in Ireland my pain doctor had prescribed Lidocaine patches which I would cut up and stick on to my face (a great look for scarring your child).  If you  get hosuffer can yourself with TN I'd certainly request them from your neurologist or pain doctor.  I find them more effective than a Lidocaine cream because you have to rub the cream in and keep applying it which sets off more pain.
Sadly however, now I'm living in the UK, my NHS trust does not provide these  patches so I'm down to my last few trying to cut into the smallest pieces I can get away with, position my wheat pack against it and trying not to touch it or move.

Do you know what though, I'm actually LUCKY! I know, crazy talk right, but for some people, that single zap that I'm talking about is their EXISTENCE!

It may only last a second per Zap but believe me it takes your breath away.
Imagine getting those Zaps ALL THE TIME. Runs of them. One after the other after the other. I shudder at the thought.
Triggers can be simple things like cleaning your teeth, touching your face (as I proved to myself), even talking! Attacks can last hours, weeks or months.

TN is another invisible illness that is a quality of life vampire. Where it's sufferers (unless mid attack of course, because it's pretty obvious then that they're sick), tend to look healthy.

As with so many invisible illnesses ignorance remains a major obstacle to sufferers.

Diagnosis can be hard to get, especially if you don't fit the narrow documented criteria.
My own diagnosis was a tentative one as I (up until now) presented with atypical symptoms. At least I'll be able to go back to my neurologist and say I've got my "proper" TN badge.

There is good news though!! When you've got this precious diagnosis there is treatment available.
This ranges from  pharmaceutical options  (but thanks to my chemical sensitivity, I'm unable to tolerate 95% of meds so instead I'll be reaching for my CBD oil and vape),  to surgical procedures that can mean relief for many sufferers.

After writing this I went on to have a few more zaps. Then back to the face ache/soreness topped up with bone numbing fatigue.
I've actually slept today away.

Thank goodness my husband is so good. Helping me and minding our SN son.
I'm now hoping it will go back in its cave.

I will be going back to my Bowen as soon as funds allow as I'm sure that's the reason I'd not had a TN attack or migraine for 6 WEEKS!!

Anyway, as always, thank you for reading.

Sending gentle hugs to all who need them.

Remember #invisibilityhurts so share share share.

Awareness is key. 💜❤️💚💙
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

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