I started to get constant pain on the RHS of my face, cheek, lower jaw and teeth, around and above the eye and down the bridge of my nose (which I found to be the most painful) about 6 months ago The pain was more severe than anything I’ve ever felt before.
Eventually I could not stand to wear my glasses, however, if I dabbed at my nose (and face) with my finger, I got a second of relief. So I looked weird always poking at my face. The pain on my nose was off the charts as with all the other pain in my face and sometimes even felt like a stinging burning sensation coupled with the pain.
I managed to find a way to wear Apple AirPods and make it so I could wear my glasses but have them not touch the bridge of my nose.
Then I could get my work done - I needed to keep working.
For 6 months I bounced from Doctor to Doctor and Emergency Departments - being fobbed off and eventually I felt like a drug addict trying to score some pain pills LOL.
10 x Panadol and 10 x Nurofen (maybe ibuprofen in US) a day would do nothing and eventually I stopped taking them as I thought I would damage my liver.
Occasionally I could “score” some Tramadol or Acoxia (Etoricoxib) and that worked a tiny bit but run out quickly.
About 1 month ago I went to the A&E and said, “stick a fork in me, I’m done” - I could hardly walk and had lost so much weight - I was ready to quit work and everything. Now they took my pain seriously and admitted me to hospital for a week (first off a CT to rule out of I was having a stroke), then lots of other tests like MRI, and a lot of other tests I don’t really remember - they even tested my blood to see if I carry the gene for a reaction to Steven - Johnsons syndrome.
I was diagnosed with Atypical Trigeminal Neuralgia (constant pain) and started on Pregabalin 150mg in the morning, 75mg in the afternoon and 150mg at night. The Pain Specialist gave me more Tramadol and Etoricoxib to take “as needed”.
The Neurologist and Pain Specialist said it’s the start of a journey and they’ll see if they have to change me from Pregabalin to other drugs (I can see all the other drugs people are taking as I’ve lurked here for a few weeks), or if surgery is an option - they said most likely I’ll live with some pain for the rest of my life. They said if I could survive 6 months at max pain then I should be ok at lower levels 😂
Primarily the nose pain has gone and the rest of my face reduced to a tolerable level (by tolerable - on a bad day my lower jaw and lower front teeth feel like they are fractured and the side of my face punched by a pro. On the good days just like a dull painful and sort of a stinging burning feeling - hard to describe)
When I found out that the pain I was experiencing was likely higher than childbirth or terminal cancer, I don’t know how I survived (and still worked a job). Family life suffered though.
I had a pain free day the other day - let’s hope for more.
I went to a restaurant with the family the other day and that was really good - first time in 6 months.
I feel like I have my life back.