Trigeminal neuralgia

[En89]

Hi everyone not sure if this is the right group but it's limited I have been diagnosed with trigeminal neuralgia after going to dentist in June with the worst pain imaginable in my teeth had loads xrays and nothing was wrong was sent to gp as dentist suspected I got trigeminal neuralgia... went and they said every symptom is in line with trigeminal neuralgia. I'm awaiting to see neurologist again got a mri and mra tomorrow.

It's the worst pain imaginable and I also have endometriosis and adenomyosis which is another EXTREMELY PAINFUL CONDITION! but this trigeminal neuralgia even beats that! It's so lonley and so many times when I've had a attack I don't know if I can live with this. I even overdosed last month not necessarily to "end me" but was more in desperate attempt to stop the pain. I ended up in hospital for 5 days.

I don't know what the point of this post is apart from is there anyone else that has it and understands how I feel? I sometimes feel crazy

[bridgeit]

Hello En. You might find that your post is picked up by more readers if you re-post it on the 'headway' forum. I belong to the Neuro Support community, but we're thin on the ground!

I have no medical training. My information is based entirely on personal/general experience over the years. I do not have trigeminal neuralgia - but I've certainly had neuralgia!

Re trigeminal neuralgia; it is reckoned to be one of the worst kinds of head pain imaginable and it's not, by all accounts, easy to a) determine the reason why it's kicked off or b) fix it. I'm assuming your dentist has ruled out TMJ (jaw joint) dysfunction and impacted wisdom teeth, i.e. the obvious.

It may be that you're 'bruxing' or grinding your teeth at night, which can trigger trigeminal neuralgia. If that's the case, you should be wearing a mouth guard at night, every night to preserve your teeth and help relax your jaw (speak with your dentist). Bruxing causes masseter, TMJ and occipital muscles to seize, as well as the fascia throughout the head/neck area. This combo will pinch nerves and the trigeminal is high on the list.

That said, I can suggest something that you might like to try, before you resort to strong/too many drugs. I've found it's best to try the harmless first, before moving on to attempted fixes that might result in complications. Just as an aside, the common pain-relieving drugs such as paracetamol/aspirin/codeine are reckoned to be ineffective for neuralgia. In my experience, low dose Amitriptyline is the go-to that GPs offer when prescribing for neuralgia relief - and that comes with its own brand of problems.

Back to my suggestion, which is professional massage of the neck, shoulders, jaw and temples. This should be delivered by an experienced, trained masseuse; mine is excellent and attached to a bona-fide physiotherapy clinic. Each session should run for about an hour and may be needed long-term, especially where anxiety is a back-drop. Massage should help release tension and thus relieve nerves and resultant pain. It is unlikely that this would be delivered via the NHS. Costs is around 65 pounds per session.

The masseuse will tell you what state your muscles are currently in, and I'd put money on them doing a good impersonation of reinforced concrete.

This is all assuming that an MRI does not reveal anything that can be taken forward. Severe muscle/fascia tension and pinched nerves will not show up on any scan.

I do hope you are well-advised by medics and find some relief soon.