GCA OR TRIGEMINAL NEURALGIA!!

[Lanza23]

Im not sure if I'm having a flare of my GCA or its an attack of Trigeminal Neuralgia. I'm currently down to 6mg of preds since 6th Dec and have a sore scalp which triggers into my face and neck. I get the occassional shooting electrical shock pain in my ear. Ive had this now for 1 week but it is slightly better. I really don't want to increase my preds as its taken 2 and a half years to get this far from 60mg. Ive also got PMR but not having any problems with that!!Help!!

[Blearyeyed]

Have you suffered with Trigeminal Neuralgia , Occipital Neuralgia or any forms of what are called "Thunderclap" headaches or migraines before ( sharp, stabbing head pain through the eye or ear that comes suddenly and leaves quickly which may reoccur a number of times in an hour ) and does it feel the same?

Do you feel that the Pain is more like GCA symptoms that you experienced originally or with a Flare?

Have you noticed that you have had an increase of activity or Stress or have been in a different area that could have triggered short term Head Pain ?

Have you tried using standard Pain Medication like Paracetamol , or used any Neuralgic Pain medication that you have on prescription , and noticed if your symptoms improved ?

Do you have any other symptoms that started around the same time anywhere in your body that you haven't mentioned ?

These answers will help you to get the advice you need , if you are happy to add more information.

However , with a history of GCA , it would also be a good idea to arrange a GP appointment and get their advice and help to treat your current symptoms , they will be able to give you a more accurate diagnosis as well as including your current issue in your notes.

[Lanza23 in reply to Blearyeyed]

Hi there thank you for your reply. I have had several bouts of trigeminal neuralgia in the past. And im convinced this is what the pain is. Today it has almost gone and the sore scalp is just a very small area so im trusting I am right. When I have had it in the past it usually takes about 10 to 14 days to go. I do take just paracetamol before bed time for it and the soreness and pain doesnt keep me awake. Lets hope it is in the burn out stage.

[Blearyeyed in reply to Lanza23]

I know what you mean , I had it for years , I did occasionally get it with hot itchy scalp as well. Have never been offered any prescription medication to bring it under control quicker , realistically paracetamol isn't enough?

[Lanza23 in reply to Blearyeyed]

Many moons ago my then gp gave some epileptic drugs to deal with it. I never took them as they would of taken 2 weeks to get to the root of the problem, and im not one to take medication unless im in dire straights. If pain can be managed without intervention of drugs I'm happy to go along with it for a while. Merry christmas 🌲🌲

[Blearyeyed in reply to Lanza23]

I got that , didn't work , then I was put on Garbepentin , then the better version Pregbalin as it has less side effects.

Learning your triggers and adapting how you do the things to avoid them is the best thing to help as it stops so many flares.

But the Medication above , is helpful in getting it into control a lot quicker and with less intensity.

It doesn't have to be taken long term unless you have severe TN or ON.

You can have it on repeat prescription to take as an acute dose medicine . Starting with the day of trigger and then when it goes of taper off it over a few weeks after without the Taper side effects of Steroids.

It might be worth discussing your current bout with the GP and discussing the option of Pregbalin with them . Getting it on repeat prescription but choosing to use it in the Acute Method.

Take care xx

[Lanza23 in reply to Blearyeyed]

Thanks for that info. I'll see how it goes for now, as I have my Rheumatology appt early in the New Year, and as I said I think it has almost gone but will discuss it with him anyway.

[sassykitty in reply to Lanza23]

I am taking gabapentin 300mg at bedtime

[SnazzyD]

I’m not a doc but the shooting pain aspect does suggest a nerve issue. Asking yourself whether this feels like pre diagnosis is an idea too. Medical assessment would be needed to rule out other things too, even shingles which can feel like an electric shock at times. Look up sternocleidomastoid pain too while you’re waiting; this caused me to think I was having a flare a number of times.

muscle-joint-pain.com/trigg...

Does anything make it worse or better?

[maria40 in reply to SnazzyD]

Very interesting, thank you.

[Lanza23 in reply to SnazzyD]

Thank you for your reply. See my reply to blearyeyed .

[maria40]

Like you I wasn't sure whether what I was having was a GCA flare or neuralgic pain. I too was at 6.5 and reluctant to go up. I saw my GP and he has raised the dose to 15mg until after Christmas. The waters have been muddied a bit because my bloods are raised ESR 68, CRP 27 but I have recently had kidney stones. But I think he regarded this as a safety measure. The symptoms have mostly gone, though have still had a couple of shooting pains in and around my ear and a very slight headachey twinge. Annoying because this takes me into three weeks at a raised dose so assuming bloods show lower counts I'll still have to go down slowly. But better safe than sorry.

[PMRpro Ambassador in reply to maria40]

You will be able to drop to 10mg quickly - providing of course it ISN'T GCA. So it isn't too bad!

[Lanza23]

Maria 40. My nerve pains have almost gone now and I have just a small area of sore scalp. It usually takes 10 to 14 days to abate when i get an attack and im sure that it was trigeminal neuralgia. Hopefully I dont have to increase my steroids.

[Blearyeyed in reply to Lanza23]

Also forgot , when the Pain comes on I have a cream called Dermacool , you can get it on prescription but also online. It is actually for all sorts of skin and tissue inflammation and I was first given it in hospital to use.

I have the middle % cream . It literally makes the skin supercool and initially tingles as it removes inflammation.

When I have migraines or TN episodes that make my scalp itch and tender , I put this on my temples and across my brow , being careful of not getting it anywhere near the eyes. I also put it behind the ears and on the back of the neck .

This helps cool the attack down and reduce my scalp tenderness too.

If you choose it , obviously do a test on another part of your skin to check you won't react to it , when your head is back to normal , you might find it soothing .

[Lanza23]

I can not compare my short bursts of pain to your constant pain, but I do hope it is now controlable for you. I really sympathise with you to suffer with constant electric type pain.

[sassykitty]

Sounds exactly what I experienced and the gabapentin 300mg at bedtime seems to have helped me.