Atypical Trigeminal Neuralgia

[calluna]

Good morning, oh wise ones.

A bit of a rant/whinge coming up here.

I have just had a provisional diagnosis from my GP of atypical trigeminal neuralgia. The alternative diagnosis, which has not yet been completely ruled out, is temporal arteritis, but he doesn't think that's what it is because there are no inflammation markers - GP says 'nothing jumps out' in the blood results. And he says that although there are cases of temporal arteritis with normal inflammation markers, this is very rare, and it is much more likely that the pain is neuropathic, especially as I have a pre-existing condition of neuropathic pain.

Well, darn. I suppose it is better than temporal arteritis at least.

Tramadol does not touch it, the pain is as bad as PN has ever been, it has the 'live' quality that I had right back when the PN first began. My GP wants me to restart nortriptyline and see if it makes a difference. 10mg tonight, and keep at that level for a few days - then increase to 25mg and see if that does the trick, if not then back to GP. Also back to GP - asap, he says - if anything changes or gets worse. And he wants to see me again anyway in the New Year.

I've had trigeminal neuralgia for some years now - zap! ow! zap zap zap! ow! - and then gone - but it has never lasted longer than a couple of minutes and I didn't worry about it. After all there were worse things happening at the time.

This is like the zaps but with added continuous burning aching horribleness. I started to read some of the info online about atypical TN and have stopped, it is too nasty.

Fume, fume. No fair. But then fairness is never guaranteed, is it.

Still waiting to hear back from Dr Greenslade's secretary, she has not returned my calls at all. Unimpressed here.

[Karyn]

Oh, Calluna ...
I'm so sorry. I had no idea you dealing with this on top of everything else. ((hugs))!!!
Is this an accurate description of your diagnosis?
http://www.hopkinsmedicine.org/neurolog ... ments.html

I've had trigeminal neuralgia for some years now - zap! ow! zap zap zap! ow! - and then gone - but it has never lasted longer than a couple of minutes and I didn't worry about it. After all there were worse things happening at the time.

Yes, I can certainly relate to that! Have your symptoms of ATN gotten worse recently? Is there a specific area on your face that is targeted or is it random? I often wonder just how much pain the human brain can keep track of.
I hope you hear from Dr. Greenslades office, soon!
Hugs,
Karyn

[calluna]

I've just got through to Dr G's secretary - she actually answered the phone, hooray. She says that Dr G is on annual leave and that when he gets back she will pass him my message, and I will get an appointment if he feels it is appropriate. They are currently booking appointments in May next year. I did tell her that he had told me that there would be no problem when I wanted to come back and see him as he had made a note on my file for an open appointment. She says, yes, she'll pass the message to him and see what he says. We'll get there in the end.

Symptoms match that link. This started a couple of days ago after a minor bump on the head - getting something out from under the sink and cracked my head on the top edge of the cupboard opening. No big deal, just a lump on the forehead.

I'm now feeling pretty unwell and the pain is spreading and getting more intense. Basically I have a bad headache, one sided on the right. It is not a migraine, or at least doesn't feel like the migraines I've had before. My right temple is very painful indeed and extremely sensitive to the touch, the arteries there are visibly distended and bulging, going across to my eye. The pain has spread to include the right side of my scalp and forehead, around my eye - the eyebrow is very painful - in front of my ear and down the side of my face, the right side of the jaw and neck. If it is TN, it is atypical because it is continuous.

Also now have aching joints, right shoulder and right hip are bothering me quite badly but they are nothing to the headache and the pain in my face. Also seem to be getting a sort of rash across my forehead and across my temple, most odd. I shall call GP again tomorrow if the joint pain doesn't settle - he said he wanted to know about any changes or any new symptoms - this is new since this morning.

Moan moan whinge whinge, sorry people.... Ah well if I can cope with PN, I can cope with this. Am going to have a sleep now.

[Karyn]

Calluna,
OMG! I'm so sorry you're going through this.
You're more than entitled to moaning and whining.
Yaaay! I'm so glad you got through to Dr. G's secretary!!!!!! I hope they can get a handle on this.
Sending prayers and healing thoughts to you...

[helenlegs 11]

Unimpressed here.

Heavens sake Calluna I don't blame you one bit. Plus you are being a master of (adopted) British understatement I'm sure.
I have always thought that although pain in the pudendal area (obviously so personal) and in no way desirable, facial pain would be worse; in that the face is more 'the person' so to speak. While no pain is preferable altogether I really would not want trigeminal neuralgia one bit, then on top of what you are already having to come to terms with. Not nice!!
You have my very best wishes and I hope it disappears soon.
Should have send this much earlier but didn't press submit
Helen x

[calluna]

Thankyou helen and karyn.

They think more than one thing going on. Both sides now. Nerve pain face/temple/scalp/jaw - both sides now, worse on right. Headache. Red blotchy lumpy rash across forehead, both sides, worse on the right. Forehead is puffy,right side of face puffy, blood vessels in both temples bulging, right eye painful and bloodshot. (Yes, I look gorgeous!) Pain in shoulders and hips, worse on the right, low fever, feeling ill. Pain also inside mouth, at back of hard palate on the right, and front part of right ear.

Pain fits for atypical TN but unusual to have it on both sides. Rash, swelling, fever, malaise and joint pain do not fit. And nausea, although have not actually been sick. Bit puzzling.

Advised, nortrip 25mg tonight, oxycodone 10mg prn. If it gets worse then a&e immediately, if still have it on monday than a&e anyway. Best pain relief is ice actually. What would we do without it.

[molly]

Hi Calluna,

So sorry you,re having to deal with another ghastly condition, life is so unfair. There is a theory that certain conditions hunt in packs, not much consolation I know.

From my time at the nati9nal heurology hospital, Ido remember there being a whole team dedicated to face and head pain, hope it does,nt come to that as Frenchay is an excellant hos
pital, but just bear it in mind that there is a specialised team inthe Uk, or at least there was, so assume there still is.

Best wishes

Molly

[Karyn]

Calluna,
I honestly don't know what to say, other than I'm horrified for you!
Do you think that nasty bump on the head was a trigger, or a coincidence?
Hugs,
Karyn

[Anne smith]

Hi calls a
My mum suffered with try germinal neuralgia for many years and as a teenager I saw her suffer for twelve years until my dad ran in one day from work and told her that a fellow sufferer that worked with him had had surjury and had been relived of the pain! She has , apart from a few ghost pains has gone one(she is now eighty eight and has gone on to lead a pain free egsistence. There is a prosidure that can cure t/n and it is by injection into the nerve ganglion under semi sedation! Do not acsept that nothing can be done! You need to see not a neurologist you need an appointment with a neurosurgeon ! P.n.e is a hard one to treat or cure, but trust me t/n can be successfully treated! If you want to talk with my mum(eighty eight and amazing) I can arrange it! T/n can be treated! Don't take no for an answer!
Anne smith

[calluna]

Thankyou Ann! Your mum sounds like a wonderful person and I am so glad that she is doing well. And how brilliant of your dad too!

The facial pain is much reduced with nortriptyline 25mg and the current thinking is that the nerves were irritated by something else that is going on. What this 'something else' actually is, the doctors are a bit puzzled. But the hope is that when this lurgy settles down, the nerves will no longer be irritated and the facial nerve pain will go too.

The rash and swelling of my face has spread every day, my forehead and the sides of my head and down behind my ears have been covered with big hard red irregular painful bumps - the largest are maybe the size of the end joint of my thumb, the smallest maybe the size of the end joint of my little finger. It started with the right side and then spread to include the left side. However it does now seem to be starting to get less - parts of the first areas of the rash are no longer red. The worst area at the moment is around my left eye which swollen almost shut at the moment but my whole face is still very puffy. I have fever, nausea, loss of appetite, muscle aches and joint pains, generally feeling pretty ill.

I am told it is definitely not shingles, nor is it cellulitis or erysipelas. If anyone has any ideas what on earth it might be.....?

Last night the out-of-hours GP noticed that I have blood (not visible), protein, and leucocytes in my urine. So he thinks perhaps a kidney infection or UTI although I have no pain or problems in that department (apart from usual difficulties which I am well used to) and he has given me a week of strong antibiotics which will hopefully sort that out. He says that kidney problems can cause swelling of the face and around the eyes - definitely got that! - so maybe these things are connected. And if this thing with my face is an infection of some sort then it may help that as well.

All a bit O/T on a PN forum, sorry people. Apart from the ATN, which is apparently more likely because I have a pre-existing neuropathic pain condition, ie PN.