Tag: atypical trigeminal neuralgia

Adding Another – Probable Meniere’s Disease

Bones

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Lately I’ve been having a lot of difficulty with dizzy spells.  Sometimes these spells only last a moment – the kind you get when you stand up too quickly and the blood rushes everywhere but your brain – while others last for hours.

I can’t even remember how long I’ve been having these dizzy spells.  All I know is they’ve been going on for at least a few months.  When a new thing crops up I don’t jot it down, I just manage it and then forget about it.

I raised this issue with my doctor, and he said it sounds like Meniere’s Disease.

Meniere’s Disease is another one of those ones no one quite knows how it works.  It’s a disorder of the inner ear somehow – it’s thought to be caused by an abnormal amount of fluid in the inner ear, leading to abnormalities in balance.  It causes vertigo, hearing loss, tinnitis, and you’ll often experience a sense of fullness in the affected ear.

Which is, of course, my right ear.  Same side as my ‘atypical facial pain’ (atypical trigeminal neuralgia).  I’m starting to wonder if there’s something more going on here, so I’m sending my MRI off for a second opinion once I can afford the $400 consultation fee.

I’m writing about this today because today is a vertigo day.  I’m slumped on the couch with a cat on one side and a dog on the other and the world is swirling around inside my head.  If I close my eyes, and so lose my visual reference of the world (which isn’t spinning, funny that), I feel a bit like I’m tilting around in a circle.  My ‘up’ axis doesn’t quite correlate with gravity anymore.  And even with my eyes open, my eyes don’t stay fixed to one point very easily.  They keep sliding away with the vertigo, leading me to flick my eyes around what it is I’m looking at constantly.

Another effect of Meniere’s Disease is the loss of hearing in the lower frequencies, and the inability to separate sounds from one another.  We did a very basic hearing test which showed a dramatic loss of hearing in my right ear in the lower frequencies, as compared to my left, and to the higher frequencies.  I also struggle to separate noises, so if there’s someone cooking in the kitchen, I have difficulty hearing whatever it is I’m watching, or difficulty hearing my amazing human when he’s talking.  Same with if there is more than one person talking, I really struggle to hear either or.  It just becomes sound mush.

Once the COVID lockdown has eased I will get a full hearing assessment done.  This is more out of curiosity than anything else, because the low frequency loss in my right ear, along with vertigo, is a probable diagnosis for Meniere’s Disease.

Ah well, more weird things to add to the pile!

An Injury Is Never Just An Injury

Bones

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When you have fibromyalgia, or trigeminal neuralgia, an injury is never “just” an injury.

Three weeks ago a door viciously attacked my little toe.  It was … well it wasn’t broken, and that’s the only positive thing I can say about it!  So the next day my fibromyalgia goes “HAH, PETTY TOE, LET ME SHOW YOU THE TRUE MEANING OF PAIN” and everything from my waist down felt swollen and heavy and on fire.  My joints all the way up to my hips were stiff.  I lay in bed and read trashy fanfiction to distract myself from the pain.  The day after that the burning heavy stiff sensation was only in the leg with the bung toe, and after that it went away completely.

So fibromyalgia is a real asshole when you get hurt.  But to top that off, whenever my fibromyalgia does a flareup, my trigeminal neuralgia does a flare up!

Well today, while sorting rams, I got smacked in the nose.  Fortunately by a hand and not a ram, but still, it was a good thwack.  I went and put cold water on it (the best we could do out on farm) and promptly had a meltdown.

The injury is on my face.  The injury is, specifically, on my nose.  The inflammation will put pressure on the second branch of both trigeminal nerves, and that’s likely to set off my trigeminal neuralgia which I had only just settled down after a volcano pimple on my jaw decided to set the whole thing off (why, oh why, does my face do this to me?).

So I had an anxiety attack, which is kind of understandable.  I don’t want my fibromyalgia to flare up.  I don’t want my trigeminal neuralgia to flare up.  I don’t want to be in pain.

But I don’t really get much of an option, and not doing the things that I love to keep myself safe from injury is also not an option … so I have to be kind to myself when I am injured.  And reduce inflammation as much as possible!

For now it is definitely setting off both trigeminal nerves, but it’s only set off the third branch of one side and mildly set off all three branches on the other.  Here’s hoping fibro doesn’t kick in tomorrow and make all the joints in my upper body stiff and achy!  I’ve got stuff to do!

Deep Tissue Massage for Fibromyalgia

Bones

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My acupuncturist had a family emergency last month which meant he was off for about three weeks.  During that time I had some fairly considerable trigeminal neuralgia flareups and, in a pain induced panic, decided I must see someone … just not someone with needles.

I looked around online for massage therapists near me and stumbled across this one particular one that had good reviews and wasn’t overly expensive.  I got an appointment for the next day and went in, hoping some massage would ease the fire in my face.

It didn’t.  Oh boy did it not.  What it did do, however, was loosen some knots that haven’t been released in decades, knots my shiatsu massager just would never be able to reach.

Now I’m not talking about your normal relaxation massage where you go in and they kneed you for an hour.  No, I’m talking about the massage where the therapist actively finds the painful spots and then digs her thumbs into them for an hour.  It’s painful.  I make some truly spectacular noises and groans of “oh god” while she’s doing this.  It’s amazing.

I left feeling battered and bruised and nauseated, like I always do with any body work that releases tension, but after a few days I felt revivified!  I went back the next week.

This time she discovered even more knots.  See, now that she’d begun relaxing the superficial layer, she was able to find the deep knots, the ones that cause problems.  The ones that haven’t seen the light of day (or rather, felt the “tender” touch of a massage therapist) for decades, nay, eons!  Well after this session I felt so light headed and dizzy I couldn’t quite function for the rest of the day, or the next three days after that.  She’d knocked something loose in my back that had really done my head in.

I’ve just revisited her today and I am definitely noticing an improvement in how my body feels, despite the pain from coming off Tegretol (another blog post in and of itself!).  I’m also noticing an improvement in how my body moves, which is really rewarding.

My theory is this:  I have a lot of knots.  I have a lot of muscle tension.  I have a lot of muscle fuckery.  This will all be amplified by fibromyalgia, causing me both excessive pain, and excessive stiffness.  If I can work out these knots, release this tension, and improve my muscle health through deep tissue massage and gentle exercise, this will reduce the level of pain I will experience from fibromyalgia, because there is less muscle pathology.

So far I think it’s working?  It’s a bit hard to tell, what with exams, the stress of losing a friend, and coming off Tegretol.  To be honest I’m just throwing everything I can think of at my fibromyalgia and trigeminal neuralgia and hoping something sticks, so identifying exactly what is having exactly how much of a positive impact is going to be a bit tricky.  Here’s hoping the deep tissue massage sticks!

Either way, it’s making me feel better, and that’s the most important thing right now.

Acupuncture as an Adjunct Treatment for Trigeminal Neuralgia

Bones

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Since being diagnosed with trigeminal neuralgia, it went from bad to worse.  Even with the maximum dosage of Pregabalin and a thrice-a-day dose of Tegretol, the pain in my face was an almost constant 8-9 out of 10.  I like the following pain scale, because it also shows my mental state.

15 Pain Scales (And How To Find The Best One For You) | PainDoctor.com

Not only was I reeling from the Tegretol, but I was almost incapacitated with facial pain, which somehow is so much worse than pain in something further away.  I was taking huge quantities of medications designed to control this pain and it just wasn’t working.

So I put all my hopes on a blood vessel touching my trigeminal nerve somewhere so they could perform microvascular decompression, which is this really cool brain surgery where they stick a little sponge between the blood vessel and the trigeminal nerve and voila, around about 7 years of no pain!

The MRI showed up nothing.  Everything was fine.  Nothing was even vaguely touching the trigeminal nerve.  There was no explanation for why I had trigeminal neuralgia.

I had a complete meltdown.  I was really banking on the MRI showing something, and it didn’t.

The next day I booked in for acupuncture.  I have now had three acupuncture sessions, and I’m just about to go to my fourth.

After the first acupuncture session my pain went down to a 2-3.  I stopped taking my midday Tegretol, so I was down to twice-a-day Tegretol.  After my second acupuncture session, my pain went down to a 1-2.  I was moving that week, so every once in a while I would have a flare up to a 7.  The CBD Living Freeze (they don’t pay me for this shout out) has been a godsend for these flareups.  I roll it all over my face, fan the eucalyptus and menthol fumes away from my eyeballs (it buuuuuurns), and my face feels normal again!

I have a mild worming pain across my zygomatic arch right now, and a bit of a bone eating sensation in my jaw, but the consistent pain rarely gets above a 3.  As I said before, I am just about to go to my fourth acupuncture session, and once my nerves have settled down from that I shall drop my Tegretol down to once a day.

My goal is to completely come off Tegretol and regain my brain and my waistline!

Three Days Post Acupuncture

Bones

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Last weekend I had been suffering greatly, and even that is an understatement.  All three branches of my trigeminal nerve on my right face were aching constantly.  My nose was set to a permanent state of burning cold.  My zygomatic arch and brow just ached so much my eyelids were significantly more closed than usual.  There’s a continuation of the first branch that I didn’t know about until it shot up from my eyebrow straight up my forehead.  Ouch, right?

Then there was my third branch, the one that goes down my mandible.  The usual hole was being eaten into my jaw, and then I had burning aches in my chin, up my jaw, the works.

The pre-branched part of my trigeminal nerve wasn’t letting the branches one up it either, it was screaming pain, making it very difficult to put my glasses on, and woe betide me should anything graze the side of my face!

Because of all this, my fibromyalgia was up.  I was incredibly stiff in the morning, and very painful to move around, all the way up until the early afternoon.  Everything was giving me hell.

I had acupuncture.

For the rest of that day, my right trigeminal nerve was deeply confused, sending waves of peace, followed by crawling burning ache, then stabbing pain.  But I was getting peace.  I myself was pretty out of it so I spent the day doing not much at all and went to sleep early.

Day one after acupuncture was bliss.  My third branch wasn’t doing anything.  This is the one that’s been eating away my jaw almost since my trigeminal neuralgia kicked up a notch in June.  It was gone.  My first branch across my brow ridge was aching, but nothing like before.  I could actually think again!  I had no shooting pains, nothing.

Day two after acupuncture was also pretty rad.  A little bit more pain was coming through, but not much.  The pre-branching trigeminal nerve was aching a bit, my brow was still aching, but that was about it.

Day three after acupuncture things are sadly getting back to almost normal.  The pre-branching trigeminal nerve is hurting a lot, my brow is aching up to the middle of it, my jaw is being eaten away, and my nose is starting to turn to ice.  I don’t think it’s as bad as it was before, pain wise, but it’s still debilitating enough that I’m just wanting to go back to sleep (instead I’m just about to quaff my third coffee in 1.5 hours – STUDY STOPS FOR NO ONE).

Still, this was a fantastic experiment.  It shows to me that acupuncture can have a serious positive affect on my trigeminal neuralgia.  I’ll report all of this to my acupuncturist on Monday when I see him next and we shall try something else.  We’re just going to keep going to see what sticks!