Four months into GCA and now suspected trigeminal neuralgia - updated to dental

[Wildlifephotographer]

Update: now confirmed dental (after being told definitely not). On Amoxilcillin for 10 days for an infection. Relieved although I could have done without the unnecessary week of pain ha ha.

This is my first post/question. I am almost 5 months in, from first becoming ill, and 7 weeks from a diagnosis with GCA. I think my profile charts the full story to date (hopefully).I am currently on 17.5mg Pred having started at 40mg (for 4 weeks). I have fared pretty well with the taper, to be honest. Even starting to feel like my legs are my own again (though I still could use some more muscle). And I don't miss the initial brain fog!

But this week I started with what I thought was toothache. Dentist declared it 'not dental'. GP is convinced it's Trigeminal neuralgia. Jaw movement, wind (of the weather variety), and hot drinks, even lying down can trigger a wave of 'face ache'. Yet not direct 'food to tooth' contact. I am now on Naproxen plus 10mg Amitryptiline. Fingers crossed.

But I also saw a comment on a recent post with a link to a medical case study about a side effect of steroids being tooth/gum nerve pain. I am open minded (and inquisitive 😉). Whatever the cause, I just want it gone.

Has anyone else experienced something similar? Was it linked to GCA, steroids or just an unlucky coincidence?

[HeronNS]

It seems more likely that oral corticosteroids would help ease the pain of neuralgia rather than trigger it. Would also be interested in learning more.

Your profile bio describes a very interesting life!

[Wildlifephotographer in reply to HeronNS]

Thank you. I, too, thought the steroids would help. Interestingly, the first day I woke with it I popped a couple of paracetamol and then took my Pred with breakfast as usual and I didn't need anything else until 3am when I was woken with it again. But the 2am-4am window seems to now be a common theme! Plus multiple episodes in the day. I am going with the GP diagnosis for now. Because convincing the dentist he missed something is not how I want this to pan out either.

[SnazzyD]

Do you mean steroid induced dentine hypersensitivity? I had that but it was set off my temperature change, particularly going from cold to hot. Drinking a cup of tea whilst having a cold face from being outside would set it off in an instant. It felt like all my teeth were hurting all at once and it was awful for a few minutes. I also had one sided facial pain from temporomandibular joint dysfunction and it lasted until my muscles regained some strength it seemed. I lost a lot of muscle mass due to Pred. Pain from wind against my face was a symptom of GCA for me along with scalp tenderness.

Are your new meds helping?

[Wildlifephotographer in reply to SnazzyD]

Hi. It was your recent comment on someone's post alerted me to the steroid induced link. I can't comment on the new meds as I only started tonight. It's been keeping me awake at night so hopefully tomorrow I will have a better idea.

[SnazzyD in reply to Wildlifephotographer]

Why does the GP think it isn’t GCA?

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

My thoughts exactly ..

[Wildlifephotographer in reply to SnazzyD]

Because the pain doesn't extend to my head/temples. And she feels the symptoms are reflective of neuralgia. But then she also admits the potential for GCA to be causing it is outside her field. I should have said I am also waiting for the vasculitis clinic opinion on that.

[PMRpro Ambassador in reply to Wildlifephotographer]

Like DL and Snazzy - I would question the GP's decision it isn't GCA. But after the experiences I have shared with my daughter this week - even less surprises me about GP opinions that before.

I had the sore teeth thing that Snazzy mentions but it was due to PMR and not pred, it happened in the first years of PMR when I wasn't on pred. It improved once I was on pred.

[HeronNS in reply to SnazzyD]

Ah, that reminds me of my super-sensitive teeth, but that started while I was still undiagnosed, therefore not taking pred. I believe Vitamin K2 supplements are what cured it in my case.

[Koalajane]

it sounds awful to have this pain. I don’t really know what=it is but I am concerned that you are being prescribed naproxen whilst on steroids. This is something I was told to be very careful of

[Wildlifephotographer in reply to Koalajane]

I have just read about the interaction. I am on 20mg Omeprazole as a stomach protector and she is only suggesting this as a short term measure to see if there is improvement. I was offered cocodomol but was worried as it once put me in a codeine cycle

[pata63]

I have TGN going back a long way. Also Migraines. Both Left Side. Both pre autoimmune inflammation. Have a look at my bio and you will see my history up until a month ago.

healthunlocked.com/user/pata63

Then switch over to this post

healthunlocked.com/pmrgcauk...

I am still working out the subtle interactions of TGN, Migraine, and how to distinguish these from GCA pain. I've been successfully on 40mg Pred since 26 June but last night I started to get the GCA scalp tingles back again for the first time. This morning I added an extra 5mg Pred. I'm waiting to see how that goes. Note that I was simultaneously tapering down my Amitriptyline back to the 30gm I was on before the recent arrival of GCA. I got to 30mg of Amitriptyline 2 days before the GCA niggles returned.

I've been though the whole dental vs other causes of facial neuralgia/TGN a few times. It isn't easy to get a definitive answer.

[Wildlifephotographer in reply to pata63]

Anything dental really stresses me as I had a traumatic experience with a failed attempt to numb a hot nerve during Covid. The jury is still out as to whether my GP has got this right, if I am honest. Because it does feel like it's tooth nerve related. But because the dentist also says no, I feel a bit like I am in limbo (not for the first time in this whole vasculitis caper) and latching onto any suggestions that might give me hope I can get this sorted soon. This morning's episode had me in tears.

[sueysue]

Hi. I have trigeminal neuralgia. Yours dosent sound like you have. Steroids would have no effect on the pain. I take Tegrotol which is really an anti seizure med. I am in remission at the moment, but when it flares it's really unbearable pain all side of face stabbing pain in eye and deep ear pain. I was diagnosed by MRI scans 6 years ago. Hopefully you haven't got it but you really need to see a neurologist hun x

[Wildlifephotographer in reply to sueysue]

Thanks Sue. I don't think the steroids are having an effect now. It was just the first day I wondered if that's why I didn't get any pain until night time. The dentine hypersensitivity thing could well be a possibility I think. It does begin like tooth pain but then radiates.

[Broseley]

A friend and colleague had TGN. He said the pain was unbearable. He ended up giving up work. Nothing helped, until he discovered cbd oil. He's had no problems since.

[AtopicGuy]

The other thing that can cause nerve pain (neuralgia) is reactivations of common viruses, such as cold sores (herpes simplex, HSV) and shingles (herpes varicella/zoster, VZV). These are very obvious once the rash develops on the skin, but sometimes the immune system nips them in the bud and no rash appears. The only symptoms then are pain and/or itching as the virus spreads along the nerve.

HSV often hides away (latent) in the junctions (ganglia) of the trigeminal nerve, breaking out whenever the immune system is weakened by stress, illness or immunosuppressive medications. Pain can appear anywhere on the front or sides of the head, including inside the mouth, nostrils or sinuses, but is most common near the upper or lower jaw.

The Abstract (summary) of this paper explains how our bodies maintain an elevated immune response to keep these viruses pent up, after we catch them, which is usually in childhood:

ncbi.nlm.nih.gov/pmc/articl...

BTW I have long used an anti-sensitivity toothpaste twice a day. When I was on prednisolone, however, this was not enough. So I dissolved the same toothpaste in water and rinsed with that between meals. The fluoride helps calcium & vitamin D to re-mineralise the enamel, too.

[Wildlifephotographer in reply to AtopicGuy]

Thanks for the toothpaste tip. I will give that a try too.

Thanks also for the link.