Trigeminal neuralgia

[Devils_Advocate]

I have multiple conditions but my GP thinks I may also have trimeural neuralgia. I have intermittent pain in my face which is mainly right side although occasionally under my left eye. It feels like someone has burnt it and is really unpleasant.

I have also been suffering from headaches for months and a pain in the back of my head.

My GP basically has left me to it because he is pointless, despite it being an unusual diagnosis for someone my age (I am 35). I have asked for a second opinion.

Has anyone else had anything similar, what was the cause and did anything help?

I can't really tolerate pain medication, I have quite a high powered job and being off my face isn't really an option. I am also allergic to anti inflammatory medication. However, I am now in horrific unmanaged pain from multiple conditions which I know is not good for my own wellbeing.

[lupus_01]

Don't mess about. Trigeminal neuralgia can be cured. You need to see a neurosurgeon and have an operation that basically clips the artery away from the nerve. Cures the problem. My husband suffered for years and was on tegretol for years which basically meant his life was on hold because he never knew when he would have an attack. He collapsed at work one day because of it, and a few weeks later had the operation. He has never had another attack

[Devils_Advocate in reply to lupus_01]

Thanks for your response. Glad your husband finally has relief. I have asked about being referred for tests and to a neurologist - just waiting for a response.

[janiemc]

Ask to be referred to a neurologist. If they don’t help, ask to be referred to Dr Roddy McMillan and his team at UCL. Good luck!

[Devils_Advocate in reply to janiemc]

Thanks for your response. I will give him a look up. I have asked them just waiting for a response .

[cyberbarn]

Definitely ask to be referred to neurology. There are particular medications that work specifically for trigeminal neuralgia. As you also have other pain, have you been referred to the pain management team? They might help too.

[Devils_Advocate in reply to cyberbarn]

Thanks for you response. I am currently pushing them to do their job and refer me - so fingers crossed.

Yes, the pain clinic told me to practice breathing and mindfulness which I did not find helpful in the slightest.

I pay for massages, physio and CBD despite being in the UK just to get by.

[OSTEOARTHRITISRA]

Can only add , coukd you possibly take meds early evening starting low dose up way ,to find a balance and not spaced out , if not already done so ,your sleep could be next on the agenda

[Mitch48]

Hi there,

I’m sorry that you are in pain.

You say that you also have pain in your head & neck? It may all be due to referred pain from your neck, arthritis from the top of your cervical spine can cause cervicogenic headaches and are often triggered by muscle spasms in the tops of your Trapezius muscles & neck. I have them, along with other cervical & lumbar spinal injuries. This pain affects the top, sides of my head, base of my skull and goes into my face, affecting around all my eyes, cheeks, jaw and temples. It is very painful & includes pressure type sensations, throbbing & burning nerve pain, it can last for many hours and days. It began shortly before I had a second ACDF surgery and can can occur sporadically, when eating and always when I comb or wash my hair, other times it begins following painful muscle spasms. I’m going to ask my pain clinician for Botox in the relevant muscles, it works well.

I wondered if I had TGN, my pain clinician believed that I could have it but my GP said not as the pain I have is bilateral, affecting both sides of my face, later pain clinic treatments (Radio Frequency Ablation) on both sides and 4 levels of my cervical spine, took the edge off of the referred pain in my head & face as well as some of the numerous symptoms affecting my upper body.

Your GP could help with medication to assist relieve pain in the first instance. An X-ray & but more specifically an MRI could show any spinal problems, physiotherapy and a referral to a pain clinic could both be beneficial, although the waiting times are reportedly long for them.

Good luck,

Kind Regards,

Mitch.

[Hephzibar]

I have intermittent pain down right side of my forehead, nose and into cheek which is exacerbated by my very tense shoulder and neck muscles and have had tension headaches on and off for years! I have regular Accupuncture and osteopathy and take a low dose of Amitriptyline.

I have X rays in the past and the tension in my neck muscles was pulling my cervical vertebrae out of alignment!!!

Sleeping poorly makes it worse ……. I can’t find the correct pillow, so often wake up with the pain and tense neck muscles.

Do you spend a lot of time on your computer at work? My osteopath commented that he sees many people who are spending most of the day hunched over their laptop which then causes problems.

[Jaff1]

I found amitriptyline to be extremely effective. Started off on 10mg and that kept the pain away for 5 years.

[moyramm]

Hi I have trigeminal Neuralgia but it started when I was 21 ( random electric shock type pain in left side of face )( type 1) It used to come and go and I never knew when it would strike I am.allergic to most pain medication so struggled on best I could I also have other pain conditions Arthritis Neuralgia and neuropathy plus degenerate disc disease When I was 70 things changed and my Trigeminal Neuralgia became (type 2 ) constant burning pain in head ,behind eye , ear pain and cheek/jaw pain ( some of this pain may be coming from my degenerate disc problem) I have recently seen a Neurosurgeon and am hopeful that I may be able to have some treatment to ease this pain So please see a Neurologist/ Neurosurgeon to.see what can be done to ease your pain x Moyra