Anyone had trigeminal neuralgia?

[Gettingonabitnow]

Hi

Ive been having a sharp stabbing pain in the top of my cheekbone for a good year. Around where you would put a highlighter / blusher.

The pain is bearable but I wish it would stop. Comes in waves. It doesn’t feel like toothache, or if it is it’s well into my bone.

Its occurred to me that it could be neuralgia along my maxillary nerve. I’d do clench my jaw badly at night which I wonder has set it off?

But I’ve read it is 10/10 excruciating pain. Which it isn’t. Anyone any experiences?

thanks x

Forgot to mention it’s only ever on the right hand cheekbone

I’ve just been diagnosed.

seems it’s different for everyone. For me it’s constant pain in my jaw, ear and the side of my face (about 7/10) then regularly (but many times each day) electric shock pain all over one side of my face (short lived but definitely 10/10), I also get weird tingly / tickly sensations up one side of my head.

It’s been like this constantly for two months so far but the electric shock pain is made worse my chewing, talking or wind / breeze on my face.

Yes I get this it’s unbearable !! Like an electric shock right up the side of my face !

Mine is caused from TMJ / teeth grinding at night , I do wear a mouth guard .
I’ve also got tinnitus in the ear of that side it affects.
Mine usually only lasts a day or two so I use painkillers .

Thanks. Hmm sounds like mine might not be painful enough to be it!

It might be, can you live with it? The meds are horrible, really sedating

Yes I can live with it definitely. I get migraines which are 10/10 pain which I take medication for, this is a 4/10.

My late husband used to get it, it's one of the things you get with MS. He said it was like the worst toothache you could imagine, plus shooting pains in his ear and head. I can't remember what he took for it, it was an antidepressant that was used for nerve pain as well.

I’m sorry to hear about your husband, I wonder if it might have been amitryptaline? I’m on carbamazapine but when they thought I had MS I was on amitryptaline

Original neuralgia is the worst pain anyone can have. Some people have the nerve cut to prevent future attacks and others have been known to commit suicide. I used to suffer from it and had to go to bed in a darkened room and pray for it to go away. Much worse than a migraine.

Thanks everyone for your stories.

Have you had your wisdom teeth checked?

I’ve had trigeminal neuralgia - really horrendous, had panic attacks with it and felt terrified of being trapped in chronic pain forever. I ended up finding relief through psychotherapy, the Curable app and mind/body medicine. This can also help migraines. Look up Nicole Sachs, Alan T Gordon, the Curable app, mind/body medicine, the Boulder back pain study, John Sarno. It might sound crazy initially but it absolutely works.

I have it but am very lucky in that I only get the stabs of pain a few times a month. When it hits it really is a 10/10 pain but for me lasts about 10 seconds each time. Any longer and I couldn’t cope with it.

My mum has it. For a time about 10 years ago it was so bad she considered having the nerve severed despite high risks. She finally calmed it with acupuncture and when it has flared up since acupuncture has helped in a month or so.

My friend has trigeminal neuralgia and she said it is the worst pain imaginable. I've seen her have attacks and I bloody believe her.

I have TMJD (temporomandibular joint dysfunction) which causes shooty burning pains in my trigeminal nerve area, I'd rate that about a 4/10 pain wise. Definitely could be to do with your jaw clenching!

No but I do have upper dental implants at that side of my mouth, really hoping it’s not that going wrong!

Yeah it definitely could be - I’ve cracked teeth with the jaw clenching! Wear a gum shield at night but do still wake up with a headache every day from it!

I've had it and the pain was unbearable, I've had a lot of medical issues and surgeries over the years and other nerve damage etc and by far this was the most painful, it would destroy me for days after an attack of it would be over.

I would think it can vary as I wasn't in pain constantly but it was 10/10 threshold and the attacks would last hours

It was amitryptaline, he had to take it every night.

The worst pain ever, like a contraction of the face.

My mum had this for years, it took a very long time to get diagnosed. Excruciating pain to the point she could barely eat or brush teeth and the meds just knocked her out. eventually was accepted for MVD surgery which was very invasive but has completely cured it.

My deepest sympathies to anyone struggling with this horrible condition and I hope you manage to get some relief 💐

I don’t have it but I have read about this condition and it absolutely terrifies me the thought of getting it. I have Health Anxiety and a very low pain threshold and I know I wouldn’t be able to cope.

I actually need dental work just now and terrified in case it triggers it.

Are you getting help with your health anxiety? That must be an awful way to live your life.

No I don’t think it would do any good and you are right it is a terrible way to live as I live with so much fear and dread of the future. My life has become very small.

Yes I have trigeminal neuralgia:(
It is unbearable!!! It's on my right side due to a tumour pushing on the nerve. I am on a cocktail of drugs.

Oh no that’s awful can they remove the tumour