Supporting Stacey and her family through Trigeminal Neuralgia

Why have there been no updates? And why did she delete her Instagram? A lot of us donated for her to get surgery, if she is not getting it then she should be giving the money back!!

Hi Leanne, Emily Brookes here again from Stuff. Just checking in to see if you had passed my message on to Stacey, would she be up for speaking with me? Thank you!

Dear Stacey,

I just wanted to say hang in there, and stay hopeful. TN is a horrific illness, it robs you of your life I'm so many ways, but you can get a very good outcome with surgery, and I truly hope your MRI shows you are eligible for it.

My Dad tried medication as well, but it just didn't do enough (plus he had a terrible allergic reaction), he was fortunate enough to be a good candidate for MVC surgery, and had a brilliant outcome. He woke after surgery with no pain, and it was such a relief for him, and for all of us.

I will be thinking of you for your MRI, and hope that you are a good candidate for surgery too. Leanne, you are a fabulous friend for helping out like this, what a legend xx

All the best, Amelia

Hi, I saw this story and just had to reach out and share my story, because I know how utterly delbilitating TN can be. I was diagnosed with it 2 years ago at 23 year old. I went on medication which took the pain away completely initially. The side effects weren't great and I new I wouldn't be able to have kids while taking the meds, but I was under the impression that it was a temporary solution while they tried to figure out how to solve it. I was willing to wait.

Unfortunately after a year, the medication stopped working entirely, and I was in the worst pain of my life. I couldn't eat anything, I couldn't brush my teeth or kiss my partner, I could barely talk. I had no energy, so I couldn't go to work, all I could do was sit around sipping at smoothies all day. And my doctors refused to consider the surgical option. They said that I was too young, that the surgery was too risky, or that it wouldn't work - (I don't believe this is true, I believe I was given poor advice). They just told me to increase my medication, even though it wasn't working.

I felt completely helpless, and I was willing to try anything. My boss suggested a local osteopath. I was skeptical, but went along anyway. I didn't feel much better after the first session, but a few days later, I actually was able to eat solid food for the first time in weeks! Since then I have worked with the osteopath on and off for a few months. I am at the point now where I don't even need to see her anymore, and I rarely feel pain. I have NEVER again felt pain like I did in the weeks leading up to my first appointment with the osteopath.

I do know someone who has had the surgery for TN, and it has worked great for them, so that is definitely a good option. I just wanted to share my story as well, to let Stacey know that there is ALWAYS hope with these things, no matter how hopeless things may seem.

Hi Leanne,

I just read Stacey’s story and really feel for her. My mother used to suffer from trigeminal neuralgia for years. However I am glad that she is having an MRI scan as there certainly are other conditions that can cause the same symptoms. I myself had a parotid tumour and a fair few people I “met” on our support page Parotid People had this kind of pain with tumours of the parotid gland which can press onto the facial nerve and can cause sudden severe stabbing pain (although more people experience it after they’ve had surgery to remove the tumour. We call it “first bite” triggered by spicy or acidic food). I hope she will get a definite diagnosis and treatment very soon and wish her all the best. Maria

Hi there,

I feel Stacey’s pain like if it were mine. I also suffered from Trigeminal neuralgia around 20y ago. As other people have mentioned, there are non-invasive options that work. In my case and in the case of my former manager, two sessions of electro-acupuncture did the trick and stopped the excruciating pain right away. All the best. Diana

She has TETANUS !! Doctors have no clue how to diagnose it. Horrific pain, no low WBC, no fever and nothing in Xray, MRI or blood work. She was right about the abscess being the cause! This bacteria will slowly kill you. Worse pain ever. Hits the nerves. I know because I had it after a dental filling and I was also misdiagnosed with Trimingal Neuralgia, and many other things too. Please ask her when her last tetanus shot was. If it has been more than 10 years then you must consider this as a possibility and get an infectious disease doctor asap. They really do not know anything about this bacteria in Western countries. I slowly got sicker and sicker for 6 months until I was near death. I know everything about this bacteria now after what I went through so please feel free to contact me for help.

This condition sounds quite similar to cluster migraines. I had exactly the same thing happen, quite unexpected and sudden debilitating pain behind to one eye on one side of the face, which began unexpectedly at age 27, attacks lasting two hours and cluster of attacks lasting two weeks. They are called the suicide migraine as so very painful. Then three years almost to the day after the first cluster attack, it happened again and so on. Have you tried oxygen therapy or maxalt melt etc...have you ever had the aura or shimmer that obstructs your vision that characterize migraines, but without the headache? Anyway, do make sure you have been diagnosed correctly before embarking on an operation. This is a rare condition, and little understood. Best of luck.

Wow. I cannot believe what I have just read. I myself experienced Trigeminal neuralgia (oops spelling sorry!) when I was very pregnant with my second child. Also thought it was dental etc however I went to see a man who was I think an osteopath, and he fixed me up. I cannot express enough how our stories are so similar. I did not have to have any procedures etc. just one session with this guy. Please get in touch with me if you want to discuss further. Sincerely yours, Amy

Hi, I have Trigeminal Nuralgia, as do quite a few of us in New Zealand, it is a horrible disorder, however treatment is funded in case she wasn't aware.

I thought your friend might like to join the private support group on Facebook for sufferers in New Zealand. The page is called "Trigeminal Nuralgia Support New Zealand" there she will find support, treatment options, drug information etc. Cheers

Should surgery not be recommended or other non surgical options work - what will be done with the remaining funds please?

Kia ora Leanne

My name's Emily Brookes, I'm a Lifestyle reporter at Stuff. I'd love the opportunity to interview Stacey about what she is going through - I've never heard of Trigeminal Neuralgia and I doubt many of our readers have either so it will be great way to raise awareness, plus drum up some support.

I tried writing to Stacey on Instagram but as she doesn't accept messages from people she doesn't follow I'm hoping you can pass this along instead on my behalf. My email is emily.brookes@gmail.com, and phone number 027 265 9790.

Thanks for your help,

Emily