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Pain running through the nerves in my face

(9 Posts)
moosemama Mon 27-Jun-16 10:03:59

I have had this for over a week now.

It started with 4 days of migraines (had them for years) but has left me with awful pain running along the nerves above and below my teeth, above and below my eye and running into my nose. The pain also shoots into my temple and triggers ice-pick headaches (which again I've had for years) but in clusters that last longer. It also seems to shoot into the back of my eye occasionally, but that's not as frequent.

There seems to be some degree of postural involvement, as it's worse when I change position and going from sitting to standing I have to hold my head for a minute because the pain shoots through all the nerves at the same time and it's agony. I have autonomic dysfunction/postural orthostatic tachycardia syndrome (pots) and haven't a clue whether it's related to that (with the postural element) is a virus of some sort or if there's something else going on.

I've tried migraleve (paracetamol and codeine) and the migraine strength ibuprofen/lysine, but nothing seems to stop it.

Does anyone have any ideas what it could be or has anyone had anything similar?

Dh is working away this and next week, my parents are on holiday, there seems to be a million and one events for each of my 3 dcs' schools to contend with, on top of all the usually day to day stuff and I am really struggling.

Any advice would be appreciated. TIA.

Maybenot321 Mon 27-Jun-16 10:44:34

Acute sinusitis? The postural description of your pain fits.
The other thing I thought of, was the sort of horrific head pain I get with hayfever; beconase nasal spray is the only thing that relieves it~pain relief doesn't do anything.
flowers

moosemama Mon 27-Jun-16 11:00:02

Oh, thank you so much for replying. I am feeling very sorry for myself and have no-one to whine at in rl this week. blush

I thought about sinusitis initially, but I don't have any pain above my nose or in my cheeks (maxillary sinuses) where I would usually have pain with sinus inflammation/infection. The pain follows a pattern where your fingers would run if you put your palm on your ear and spread your fingers from eyebrow to jaw (if that makes any sense at all). It's mostly one-sided, but the ice-pick, shooter seem to be on both. confused

Looking at diagrams online, it really does seem to be running along the facial nerves lines, well either that or the trigeminal nerve branches, hard to tell. It's awful, but I'd say not bad enough to be trigeminal neuralgia, not to mention I don't think you get that all over, iirc. The only thing that would suggest trigeminal, rather than facial is that all my teeth hurt. I'm supposed to be having two tooth repairs (superficial, no pain causing) but have had to cancel because every single tooth on both side is already painful.

I think the postural element may be a red herring, as I already have postural issues, thanks to the pots. Also, it's not the same type of pain I've had in the past when I've had a sinus infection. (I had some corkers with each pregnancy, but none since my last pregnancy in 2009.)

Dh has some beconase nasal spray, as he gets terrible hayfever. Wondering if it's worth giving it a try and seeing if it helps. Not sure I want to share a nasal probe though! envy <--- not envy I don't usually get hayfever at this time of year myself (I get it mildly in very early spring), but have been a bit sneezy after rainstorms the last few days. I wonder if it's some sort of irritation caused by pollen then?

Maybenot321 Mon 27-Jun-16 11:08:37

I think you should go to your dentist anyway and tell them about the pain you are experiencing currently.
They will be best placed to help you with either a prescription for antibiotics if they think it is acute sinusitis; or a referral to Oral Medicine \Oral Max-fac if they suspect trigeminal neuralgia, atypical facial pain, TMJ related etc.
Good luck !

PotOfYoghurt Mon 27-Jun-16 11:14:48

The thing with facial pain is that often it can be hard to diagnose or separate.

I have a diagnosis of trigeminal neuralgia, possible occipital neuralgia, migraine with hemiplegia and aspecific facial pain (meaning other pain that doesn't really fit anything else).

I've been on various anti-convulsants which help the TN and topiramate and endometacin for migraines.

I would pop along to your GP, mine started me on carbamazepine to see if it helped and it did, and then diagnosed TN from there.

moosemama Mon 27-Jun-16 11:16:59

I've spoken to my dentist and he's sure the pain isn't dental. I can't even stand my electric toothbrush at the moment, so couldn't cope with any dental work. He won't prescribe anything, as my dysautonomia complicates things and it's not something he knows anything about.

Maybe I'd better book a GP appointment. I dread it though, as I'm stuck in a very difficult situation at the moment. Under an electrophysiologist for my pots. He wanted shared care with my GP for an off-label drug (there are no licenced drugs, as yet, for m y condition) but GP took 3 months messing around, then refused. I now can't get hold of either him or his secretary (been trying for weeks), but he can only help with the heart-rate and bp issues anyway and I currently don't have any doctors for all the other autonomic symptoms/issues. GP says they don't know who to refer to.

I really don't think it's TN. I have a friend that suffers from that and I've seen her have an attack - it's bad, but not that bad, I'm still functioning - just about.

Thanks again for your advice and support. As usual it seems I'm too much of a physical wreck for there to have been an obvious/easy answer, which is what I was hoping for.

moosemama Mon 27-Jun-16 11:24:38

Pot one of my migraine types was almost diagnosed as hemiplegic, but didn't quite fit the criteria.

I couldn't get on with Topiramate, was on it for a few months but the cognitive side effects were really bad for me. I actually developed a new type of migraine while I was on it as well, although they now think that may have been related to my dysautonomia, rather than true migraine. I can't take any Triptans because they interfere with my heart and caused a collapse when they trialled them with me (didn't know I had pots back then). Never had, or heard of endometacin.

My friend is on carbamazepine and it has literally changed her life.

If you don't mine me asking, who are you under for your head/facial pain, is it neurology?

I doubt anyone's going to do anything much to begin with, it's only been just over a week, so no indication it's going to be a long-term thing as yet. <<fingers crossed it isn't>>

The complicating factor is that I am supposed to be starting new meds to regulate my heart this week, but I don't want to start anything new while I have this going on.

PotOfYoghurt Mon 27-Jun-16 12:22:18

Isn't it strange, how medications affect people differently? I love Topiramate as it stops me sweating , I don't feel hungry and weirdly it makes carbonated drinks taste flat. And carbamazepine, whilst v effective to begin with soon needed higher dosages which made the zombie side effects too strong to compete daily tasks.

I'm now on oxcarbazepine which is similar, but have tried gabapentin, pregabalin, amitriptyline and even naproxen sometimes.

TN also has two main subtypes, type 2 is less of the stabby shocky debilitating zingers and more of a constant pain at a lower pain level.

I take indometacin for the fabulous post-costal migraines I sometimes get. Nothing sets the mood like popping a pill 30-60 before DTD.

I see a great neuro at Chelsea + Westminster. If you're in London there's also a facial pain/migraine clinic which has an optional fee but can be waived if you can't afford it.

moosemama Mon 27-Jun-16 12:52:20

I loved the weightloss on Topiramate. I don't drink carbonated drinks, so that wasn't an issue, but I was unable to even form sentences or remember basic things, even on a low dose and my migraines reduced in frequency slightly, but I developed a new type (poss not actually migraine as it turns out) that was even worse than the original ones they were trying to treat.

Naproxen, plus cocodamol 30/500 is the only thing that helps, it doesn't get rid of them, but helps me sleep. I find Ibuprofen/Lysine a very poor relation to Naproxen (which I discovered helps by accident when I injured my ankle) but it helps a tiny bit when combined with the cocodamol. Often I can't sleep as even having my head on a pillow is too painful, so at least they help me get past that. I don't want to be taking codeine very often though, so only take them if I really can't cope. I usually try migraleve, as a lower dose codeine, before going for the stronger ones.

I didn't know about the TN Type 2. I really hope it's not that.

Unfortunately I am nowhere near London. I was under the neuro at my local hospital for about 10 years, for migraine and testing for all sorts of other weirdness, which turned out to be the autonomic dysfunction, but had to go private to find that out, but was only covered for diagnosis, not ongoing care/treatment so am back in the NHS system now. Neurology washed their hands of me at that point, but very kindly said to come back if I suddenly lose the use of one side of my body or become incontinent reassuring not.

I've never been offered indometacin, but will definitely ask about it.

If I ever manage to start my new heartrate meds that will bring about even more complications as there are all sorts of drug classes that can't be taken with them. My electrophysiologist is convinced if we can get my heart rate under control a lot of my other symptoms will improve as my body calms down. It's been three months since he prescribed them though and between NHS bureaucracy and arguing between my GP and the hospital I still haven't started them.

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