Face pain

[suewood59]

Hi everyone iv started getting the worst pain ever and the doctor thinks it could be trigeminal neuralgia when I researched it a lot of peoplewith fibro get it. Does anyone get it and what has helped with the pain as normal painkillers have no effect thank you

[rosewine]

I would have a look on the NHS site as there seems to be very helpful information on there about different meds, etc that can be used to treat it. Making sure that food is neither very hot or cold and when the pain us at its height only have food that that is soft and easily chewed can help.Sometimes it can spontaneously go away so hopefully it will be the case for you.

Years back I had persistent pain made worse by hot or cold food or changes in weather conditions and it was thought to be neuralgia but the normal treatments didn't work. In the end I saw an ear, nose and throat specialist privately who said it wasn't neuralgia and referred me with the NHS to a dental specialist who found it was caused by a deep seated problem with one of my teeth. I was amazed as the dentist had been my first port of call but I went to a different dentist a d had the tooth out and the pain went.

It js a horrible pain so I hope that very soon you find something that helps you.x

[suewood59 in reply to rosewine]

Thank you yes same here went to dentist first but couldn't find anything it's the constant earache with it that I can't get rid of

[Elaine200756]

Hi Sue, sounds horrible. I really hope you find what you need to manage this 🤗

[Fibrofog]

Pregabalin. I've got trigeminal neuropathic pain in face. I had corrective jaw surgery in my 20s, and as a result from that operation , I've got nerve damage and Pregabalin is great for nerve pain. Hope this helps x

[suewood59 in reply to Fibrofog]

Thank you I did have them for fibro but they made my cholesterol go up high its one of the side effects

[Fibrofog in reply to suewood59]

Oh so that's why I've got high cholesterol! Lol x

[Bonny1234]

Hi I had it 7 years back for 11 months , I can honestly say it's the worst pain I have ever had the dreaded pleasure of having, I was given pregablin gabapentine amatriptilon not to mention a few other , after suffering for 3 months a locum doc prescribed tegratol , to my relief they worked within 24 hours pain gone , however I was off work for 3 weeks due to the side effects of the drug as I couldn't drive due to being very dazed , I had it again 2 years back however got the meds started right away and didn't have to suffer. Hope this helps x

[Blearyeyed]

I've had TN for ten years , it was actually diagnosed before the Fibro.Does it feel like a constant gnawing pain that seems to make electric shocks from your ears across your face and jaw and through your teeth?

It's is unrelenting and can come on for weeks then disappear and return again with no warning. It can make it really hard to eat and make you feel pretty nauseous so you lose your appetite.

It causes spikes in your headaches and , even brushing your hair is painful. I can't wear earrings anymore or put clips and things in my hair as I found these things set it off more.

You need to work out your triggers and adapt what you do to reduce the episodes.

You need to protect your face from wind or cold and make sure you put softer cushioning on glasses arms to reduce the triggers.

Don't wear anything to tight on your head as hard headbands or very tight hats push right into the nerve and set it off.

Eating less crunchy and chewy food and eating smaller mouthfuls helps stop it flaring at meal times.

The dentist gave me a soft toothbrush and night guard in case I was gritting my teeth and making it worse and he advised me not to open my jaw too widely.

Getting as much sleep as the TN will allow and keeping conscious that you don't tense up your jaw and face muscles are really important as that reduces the flare ups.

My TN ended up being partly linked to Fibro and part Ehlers Danlos Syndrome.

They put me on the same meds for the TN pain that they try with Fibro. First the tricyclic meds , but I can't tolerate them. Then Garbepentin, but that was changed to Pregbalin by my Rheumatologist when Fibro was diagnosed as it is gentler on the stomach and a lower dose can get better results than the Garb. They did try anaesthetic injections behind the ears for it at one point , this might work for many people but unfortunately the EDS means that local anaesthetic doesn't work on me , it had worn off before I had been allowed to leave the hospital and without its sedative effect it just gave me more pain in the injection sites. The next thing they were going to try was Botox but as I wasn't sure how I would react to it after the anaesthetic treatment I opted out of that one.

The self care , relaxation and medication make it bearable when it comes on now I know my triggers.

They did try me on Amytryptline at one point as I also have Chronic Migraine and Insomnia but I have Dysautonomia (autonomic nerve dysfunction ) and because of that AmyT actually made my insomnia and autonomic issues worse.

I hope that helps , I know it really feels like it is never ending until it is controlled so I feel for you , take care , Bee

[suewood59 in reply to Blearyeyed]

Oh my goodness you poor thing and thank you for all the info it must have took you all day to write it. It would of me lol

[Blearyeyed in reply to suewood59]

Not a problem , I've written about this before and one of the few things I can do easily is type! Take care , Bee

[Di01 in reply to Blearyeyed]

Hi sorry this post sounds a lot like I'm getting the drs keep telling me it's a sinus issue and it will go way on it's only but I've had it twice where pain going through my right side of my face down in to my jaw ,cheeks and teeth I get tinnitus on the left side of my ear but not on right side where all my pain is ATM I found out I had a small aneurysm which I thought could be pressing on some nerve and making me have nerve problems in the face but drs shut the door on that too I don't kno what to do in pain everyday with it and pain killers only slightly taking the edge of the pain just hard trying to get my Dr to listen I have nortriptyline that I could take given to me a few months back for depression Im so desperate now to shop it that I'm thinking of just taking every med I've ever been giving as the pain is there 24/7

[Blearyeyed in reply to Di01]

If you haven't tried the Nortriptyline yet , it may well help , as well as being a medication for Depression it is used as a nerve relaxant and for nerve pain.How did you find out about the Aneurysm and what treatment did you get for it?

I assume they did treat it.

Did you see a Specialist and did they discuss that you could still have Trigeminal nerve pain after treatment because of any damage that may have happened while your nerve was impinged.

TN pain is terrible as it hits the head but also gets worse when you eat and feels like constant stabbing tooth or ear ache.

It was part of the constant pain that probably increased my Fibro development. I took Garbapentin, and then Pregbalin to help ease it . I also took standard doses of Paracetamol twice a day to reduce any inflammation as well as treating the nerve pain.

The most important way to reduce the attacks is only by working out your triggers and stopping the constant flare in pain in the first place.

I had to wear hats and scarves over my face and ears in cold and wind . I had to be really careful brushing my teeth and hair . I couldn't eat crunchy or very chewy foods and needed to be careful not to open my mouth too wide. I couldn't cope with anything like hair clips or bands or hats and glasses that were too tight and pressed on the TN area. Couldn't wear earrings either.

Try talking to your GP again about the possibility of Trigeminal Neuralgia, and treatments like Pregbalin. You can take it in combination with Duloxetine or Nortriptyline but you may need to adapt the doses. It can take a while to get the dose right and get really substantial pain relief as it takes time for the nerve to recover and you do need to do the trigger prevention at the same time.

If it has gone on for awhile you can ask your GP to refer you to Neurology to investigate TN pain and damage , especially if you had a diagnosed aneurysm. Your original Specialist can also be contacted by calling or emailing their Secretary telling them the situation and asking for a follow up appointment.

Having your TMJ ( jaw joint) checked with an x-ray and with an ENT assessment can rule out if there is anything that is still causing pressure on the nerve which may need treatment. You have the right to request referrals and a second opinion if your GP care has not helped so far . If they refuse this you can ask them to explain why , and even request this explanation in writing , which often makes them change their mind and make a referral.

You can also put in a complaint to the surgery if you are not getting help or feel you are being dismissed and treated unfairly.

Do take care with the medication you get though , try anything you are given at the prescribed doses , if it doesn't work go back to the GP when you then have proof that the pain relief isn't working well enough to get a supervised increase in the dose or to try new combinations. Taking the wrong medication , or too much can actually make your symptoms worse , or cause other health problems and effect your stomach and mental health.

[Ladame]

Hi Sue I send my sympathy as the pain is horrendous! I actually passed out with it once. In the end it had all been caused by a very slight, undetected fracture in one of my back teeth. I’d seen the dentist several times, had X-rays of teeth, face-maxillary X-rays etc and then sent to a nerve specialist as nothing showed up. He put me on some really strong medication, can’t remember the name 🤪 it helped but didn’t stop. Then one day my tooth snapped longitudinally and had to be taken out- result! No more pain. So definitely see a dentist. I sincerely hope you get sorted quickly.

[suewood59 in reply to Ladame]

Thank you yes it was horrid iv been to the dentist twice but she can't see anything. I'm waiting for an mri

[Fillingincake]

One of the worst pains, try everything the doctors and hospital recommend, you can have reactions to the tablets, I find tramadol threw the day, Amitriptyline at night, when the pains gets worse paracetamol, Ibuprofen, hot water bottle. You will get some relief.

[Themanwithnoname]

Intresting as i get what i call pain attacks all over my body randomly and that includes the face. For short bursts it feels like electric shocks running down/across my face. Luckily for me they go as quick as they come on and feel as if they just travel a couple of inches . I also had what i thought were sensative teeth so switched toothpaste and im not sure if it's the sensative toothpaste that helps or just fibro deciding to move elsewhere. I take Pregablin and Amitriptyline for nerve pain at pretty low dose compared to what i read on here.

I also have trouble wearing tight hats at times and earphones but ive always put it down too joys of fibro but maybe it's another condition that overlaps.

Sure when diagnosed with fibro my report mentioned Allodynia as i would get pain if having hair shaved or touching parts of my body. Oh the joys.

GL and i hope you manage to find some relief .

[Midori]

I hear you. I'm currently suffering with something similar. Can't definitely say it's TGN, as , due to a kick in the face many years ago, my teeth in that area are breaking away.

Can't find an NHS dentist anywhere!

Personally, I find a heavy dose of IBuprofen helps, when it's bad.

Cheers, Midori

[Inthepark]

Honestly I feel your pain ,I’ve had this now for 10 years from what I’ve read it’s all to do with Fibro I woke up with it 10 years ago at first it used to come and go but then I was in pain everyday the last couple of months it’s got really bad so I’ve been struggling so I know how you are feeling, pain meds have never helped me when it’s bad I put a ice pack on my jaw or sometimes I will use a hot wheat bag sometimes it’s heat that helps and sometimes it’s ice which is strange but I’ll try anything to calm it down . Hope yours settles soon .

[suewood59 in reply to Inthepark]

Thank you poor you the weird thing to set mine of is alcohol poor me lol. Yes iv read the time in between attacks gets shorter hope I havnt got it. Iv read about surgical things they can do but I'm a baby so that's out. Hope you get sorted x