Im really struggling to find my 'community' of people who understand what I am going through.
I don't have anyone that I can even complain to on a rough day as my family and ex hubby 'have heard it all before'. I know talking can't fix it and yeah I'll talk about it all the time because its a huge part of my life 😭
How are you managing?
Ive had TN (all 3 branches on the RHS) for coming up to 3.5 years now. All caused by a wisdom surgery gone horribly wrong in December 2021.
I was managed by the Maxilofacial team at Royal Perth Hospital from March 2022 until mid last year when I discharged myself as I had so much trauma and I wanted to believe I was crazy rather than having something wrong.
MRI show no compression.
My sinus was ruptured, jaw severely ground down, my TMJ is fucked to say it nicely, as I had the muscles, ligaments and tendons in the RHS jaw calcify and needed to be surgically corrected and stretched.
Ive trialled Lyrica and Gabapentin which didnt do the mental health well as I have horrible mental health conditions (schitzoaffectice Bipolar, BPD, CPTSD and anxiety). The pills helped reduce the frequency of the flare ups but im now 14 days into a 6/10 flare up and ive had 6 massive spikes dropping me for over 5 hours each.
Im a recently single parent of 3 very young disabled children... what the hell am I supposed to do when im in a flare up?!
I caved and begged my GP to refer me back to maxfax and to see neurology but the truth is im scared to have more surgeries, Maxfax suggested freezing the nerve root but what if it goes wrong...who will be there for my babies?
Im 32 and some days i dont want to go on...just because of the pain, ive asked 4 people this week if they will please sledge hammer my face.
Im in Perth , Western Australia and feel so alone. No one understands or even seems to care.
Im in duloxetine 60mg for anxiety and 12.5mg of amitryptaline (only low because ive reacted bad in past)
Heat packs help a little during a flare up, but I usually just try and survive by laying under a hot shower brushing my teeth for hours