Advice please!

[birdadmirer]

I suffer chronic pain every day an din the night down the left hand side of my head and face.

I have had a CT scan and an MRI scan but with no helpful results.

I take painkillers everyday and to sleep. the doctor believes that it is nerve pain.

Do you have any advice?

I would be so grateful for anyone who can help as this has been happening for years.

thanks.

[MPMjewell]

Have the doctors ruled out Trigeminal Neuralgia? I suffer with this and it is extremely painful when it flares up.

[birdadmirer in reply to MPMjewell]

HI MPMjewell,

they thought it was neuralgia but the scan didnt show it. my doctor still thinks its to do with nerve pain though. im sorry to hear that you suffer with it too. what are your coping methods?

[systemicdude]

Hi there,That does sound like a challenge.

I guess my response is two fold in that I am sorry you're scans have not revealed anything that gives you answers while at same time nothing serious has been detected either.

I know that doesn't help you but hopefully you get what I mean.

Can I ask what pain medication you take?

Have you ever had problems with migraines at all?

Also having gone on so long have you talked to your GP about being sent to the pain management clinic at the hospital as they can approach the pain holistically.

Also what if anything has your dentist said?

I hope you find a way to get on top of the pain , but I do think it might help talking about this to your dentist if you have not and I think a pain management clinic would be worthwhile too. Good luck 🤞

[birdadmirer in reply to systemicdude]

Hi, Thanks for your reply. i do seem to live on ibuprofen at the moment but it doesnt touch it.

i know its not my teeth as the pain always starts in my scalp.

thanks for your advice. im am awaiting another phone call with my GP so will see if he can help with any more meds.

[Clarbear1]

hi

I do sympathise. I have had facial nerve pain for over ten years. I have seen several different specialists, including dental, maxillofacial, pain management and a neurologist. I too had an MRI which showed no cause. I’m the end it was classed as atypical facial pain exacerbated by my uneven bite, TMJ, fibromyalgia and stress. Do you grind or clench your teeth at night?

I got a bite guard made by the dental hospital which helped a little. I’ve been on different medications. The neurologist put me on Topiramate which helps somewhat. Amitriptyline helps too, I take that for fibro. I use a warm wheat bag on the area to soothe the pain. Stress definitely makes it worse.

I have tingling in my tongue on the right side which is the same side I get the pain. I also get migraines on this side of my head too. The drs are not sure if the pain triggers migraines.

I was told in the end I have manage the pain as there was no cause of it. Over the years I have had Botox injected into my facial muscles, acupuncture and trigger point injections. All with some effect but nothing cures it.

Definitely ask for a referral to a neurologist if it’s being classed as nerve pain. Or pain management clinic. It’s horrible and I wish you luck with everything x

[birdadmirer in reply to Clarbear1]

Hi,

thank you for your reply. I am very sorrry to hear that you have had such a tough time with pain, i hope you are having some relief now.

I dont clench or grit my teeth so i dont think its a'teeth issue'. but it is disabling and i often end up bedridden.

am currently on a waiting list to see someone who is a bit more of a specalist so fingers crossed!

[Konagirl60]

Hello. I commiserate with you. I had a triple crush nerve injury and I was left in acute pain for ten years because 2 MRI’s and CT scans showed nothing!

I have been tortured. I am overcoming, ‘ Central Sensitization’ an it is really hard to heal from.

The best natural supplements for pain are 1. Frankincense roll on essential oil. 2. Passionflower tablets ( nature’s sedative ) 3. Epsom salt baths ( magnesium sulphate calms muscle spasms ) .

Keep calm and carry on. Best wishes for some relief. Chronic acute pain is not healthy…it will affect your Sympathetic Nervous system and you’ll acquire Central Sensitization as well.

[DogHospiceMom]

I would see someone to rule out TMJ. I suffered for years and when I was finally diagnosed the specialist I saw had just been diagnosed with Sjogrens a month before me and he felt that TMJ is another thing related to both Sjogrens & Lupus. The treatment took a long time and at times I wanted to give up. However, he promised if I stuck with it it would get better. I haven’t had that kind of pain since finishing treatment. It went from my head on the right side all the way down to the end of my shoulder blade. I would sob at times because it was so bad.

[Sunsetzzs]

Hi,

Sorry that you are having so much pain! The beginning of this year I started with facial pain and numbness. After some tests it was determined that I have TMJ disorder. I’ve had fibromyalgia for years and I clench terribly. I knew I had TMJ disorder, but it had never hurt my face, and then also my left ear. Anyway, I came across something called Bowen Therapy. I was skeptical but decided to try bc the pain was so bad and no other doctor helped. Bowen therapy worked for me after 2 sessions. If it is available near you, I would encourage you to check it out as a possible option. My face still has a little bit of a numb sensation, but the TMJ pain is completely gone, as well as the ear pain.

[PainConcernHelpline Moderator Community Champion Pain Concern]

Hi,

Living with chronic pain can be really tough, sorry to hear that you are struggling.

Pain Concern's podcast 'Airing Pain' has an episode dedicated to facial pain which you may find helpful. The episode discusses a range of types of facial pain, as well as as possible treatment options. You can find the episode here: painconcern.org.uk/airingpa...

Additionally, Brain and Spine Foundation have a booklet on facial pain with guidance for patients and carers, with links to further help and resources: brainandspine.org.uk/wp-con...

Whilst not exclusively addressing facial pain, Pain Concern also has a leaflet about neuropathic pain, which may also be useful reading for you if healthcare professionals believe that may be the cause. The leaflet can be found here: painconcern.org.uk/product/....

Hopefully these resources can be of some help to you.

Best wishes,

Pain Concern Moderator