Excruciating Facial Pain radiating to head.

[Narwhal10]

Does anyone else experience this ? I can normally cope with it but today I have had 3 episodes - the last is still on going and it’s been over 2 hours. I rang out of hours GP and got nowhere. Any advice would be gratefully received

[Hidden]

Does it feel like it goes from your gum to your ear to your eye? If so it could be trigeminal neuralgia very painful i suffered that as a result of a cold sore my then gp said,have you maybe had any cold sores recently?

[Narwhal10 in reply to Hidden]

Thanks for your reply Thrones.

Sorry to hear you have experienced.

Yes it radiates from Gum, ear, eye to top of head. Had on and off since April - 🙄. No cold sores.

[Hidden in reply to Narwhal10]

Prob best to get it checked out again with gp it does sound like trig neuralgia have you tried neurofen to reduce inflamation.I remember the doc gave me really strong tabs when I had it little white tabs in a red box I cant remember the name sorry but God they used to knock me out I didn't like taking them.Its one of those things that you just want to lie down in a quiet dark room dont you.mines disappeared eventually but I know how you must be suffering all I can think of is neurofen or co codamol if you can still get that im not sure.Hot water bottle or tens machine if you have one?

[Narwhal10 in reply to Hidden]

Thanks Thrones,

I’ve done everything I can at home, TENS, OTC analgesia, hot water bottle, breathed like a labouring woman. X

[helvella]

I went through a period of severe pain - left jaw just in front of ear, up and across my face. Seemed to start for no reason whatsoever.

My description was usually that it felt like I had been shot. (Of course, I have never been shot and have no idea what it would feel like.) It would hit out of nowhere, then linger for minutes to hours. Sometimes happening several times an hour.

Codeine had virtually no impact.

Tramadol helped me in the sense that the pain seemed slightly easier to bear.

(I was lucky. I could take tramadol when needed, and drop it without really noticing anything. But some people find it far more difficult to give up.)

ADDING:

I found that the area in front of my left ear become unbelievably sensitive. Slight drafts - especially if cold, were unbearable. I used to wear a scarf, often with a hat as well, inside as well as out. And I never wear a hat and rarely a scarf.

A truly miserable time.

[Narwhal10 in reply to helvella]

Poor you - yes I had a hat on yesterday. Thanks for replying

[helvella in reply to Narwhal10]

The positive? It has resolved. And I am convinced that oral B12 worked - for me. I was taking B12 almost like paracetamol. If I felt anything, take a B12. The gaps widened. The pain and sensitivity reduced.

[HeartyGilly]

Look up TMJ or TMD. Although the pain is from the jaw, it feels like terrible ear and head pain.

[Narwhal10 in reply to HeartyGilly]

Thanks

[Hackneybob]

I had that problem a few years ago, it started because i opened a spot on my cheek which exposed a nerve. when i touched it would send a shooting pain through my face through my temple into my head the pain was horrific, it stooped pretty quickly but it made me drop to the floor when it happened, if i am correct the doctor called it NEURALALGIA, very painful comes out of the blue, it subsided after a few weeks when the spot healed, had no problems since. Good Luck

[Narwhal10 in reply to Hackneybob]

Thank you - yes it’s neuralgia but the 3 times I’ve asked for proper analgesia GP useless!!

[Queensv]

Yes it definitely sounds like Trigeminal Neuralgia. I have suffered from this for a few years now. I am on daily tramadol and paracetamol together (2 tabs 4 times a day) but I’ll be honest and say that nothing really takes the pain away completely. Thankfully it’s not there all the time for me and comes and goes. There is an injection they could try eventually or sometimes even surgery but I have agoraphobia and hate going to the drs office as is for my b12 every three months so I don’t want to add an extra injection to it. I wasn’t told it was related to the PA but it would be interesting if it is. I hope it resolves for you, it’s so excruciating when it happens.

[Litatamon in reply to Queensv]

Queensv, see my post below re: b12 and trigeminal neuralgia.

My neurologist said he rarely sees patients with b12 deficiency. In that moment I thought maybe they're too busy masquerading as your dementia, MS and trigeminal neuralgia patients. Sigh. It is all so frustrating.

[MariLiz]

Definitely sounds like trigeminal neuralgia, my sister in law had this very badly for years. After trying stronger and stronger pain medication, she eventually had surgery for it.

[Litatamon]

I had it for years. Could not think, converse, sit still when it happened. Just moaned. Whoever said like being shot, perfect description. Teeth, gums, jaw, eyes and worst for me - ear. It literally was like someone was stabbing me in the ear. Sent to an ENT. I thought possible TMJ.

My doctor sent me to a neurologist for suspected trigeminal neuralgia. But at the same time I asked for my b12 to be checked without knowing a thing about it.

Within loading doses most pain disappeared. In the next two months I had maybe two episodes, but quite the same intensity. Haven't had anything since December.

Trigeminal Neuralgia can go into remission. It is listed as such. So is it possible? Yes. Do I think that is what happened? Nope. The timing was too much of a coincidence.

I have since seen the neurologist. He told me all the DNA/hardware is there for Trigeminal Neuralgia and if comes again it will be an operation.

I am confident it will never come again.

And one of the reasons is an incident that happened during loading. After my second shot. After years of the debilitating pain I thought there couldn't be anything worse. Wrong. I had a 12-16 hour period after my second loading dose where it was literally like an invisible person was shooting me every twenty minutes. I had to pace in my very small condo for all those hours, when it was firing. Could not sit or lay down. And pray I wasn't making a mistake not calling for medical assistance.

I believe that episode, due to the shots, helped heal my issue.

Time will tell.

Practical information - I tried everything under the sun for the pain, including major painkillers that did nothing. I wrapped my head with ice, a ton of crazy stuff. But one thing that did help somewhat (did not take pain away but definitely helped it dissipate) was Vicks Vaporub along the nerve line. Heads up it can discolour the skin but I certainly did not care in those moments.

And I don't have any concrete proof of this but I also think magnesium can aid In this outrageously painful condition.

Everyone else who has PA/Vitamin b12 deficiency and this pain I would consider experimenting with your frequency of b12 shots just to see. Or consider going back to loading. I always hesitate to talk about individual frequency but if it could take you out of horrendous pain, I would not hesitate to consider experimenting with your frequency. It was the reason why I went back to twice a week and self-injection. When the nerve pain came as I was trying to go to a month (cyanocobalamin) I said hell no. And hell no has worked.

So very sorry for the suffering. People have no idea what Trigeminal Neuralgia is like.

[BirdlessBox]

I wanted to share my experience but my brain is too tired. So briefly re painkillers: When I have had this kind of nerve pain it is very similar to the sciatic pain I got when I blew a disc in my back. The only painkiller that helped for that was specific for nerve pain, Gabapentin, which is listed for use with neuropathic pain. I had no problems with being on it or getting off it, just don't have any alcohol.

[Narwhal10]

Thanks Birdlessbox,

Sorry to hear your brain is too tired. Poor you with sciatic pain, that’s good that you found something that worked.

Take care