Trigeminal Neuralgia- anyone else get attacks in the middle of the night?

Hi , I am an ex sufferer having had a successful operation but still remember that pain . I too had attacks at night and put it down to being asleep and relaxed , maybe lying on the affected area? I slept half upright on 3 pillows every night for years to try to prevent them , hope you get some help soon x

 

Hi Marla,

I'm so sorry to hear about your pain. 

I was diagnosed with TN in 1985, had many years of remission between periods of pain.  The pain got worse and more frequent over time, until I was taking 300mg of Tegretol and 150mg of Dilantin to cope with the pain (gabapentin didn't help at all).  I woke up with every hour, take more pills, and wait 10-15 min. to get back to sleep. This lasted until I had a MVD surgery in 2010.  But, even then, much of the pain persisted.  I was told the surgery may not be as effective so many years after the diagnosis.

For the past 4 years I have avoided medications  by following a strict diet and snacking on Ceylon Cinnamon.

For the most part, I only eat organic foods, no sugar, no alcohol, no bottled drinks, and no processed foods.  

There are times I go back to my sugar addiction and suffer the pain.  I can eat the sweets for about 2 months before the pain returns, and it takes 2-3 months for the pain to go away after returning to my diet.  It seems to follow a rise in my A1C levels, but I don't have test data to prove it, yet.  I am currently at the end of the 2-3 month recovery period after a 2 month spell of eating too many dark chocolate covered almonds.  I took a 50mg of Dilantin, twice when the pain first started.  Dilantin causes a greater sodium spike in my blood levels, but doesn't put me to sleep.

Chewing Ceylon cinnamon sticks is my only recourse as it lowers glucose levels, fights insulin resistance, fights inflammation, and the hot cinnamon flavor in my mouth stops the current pain.

I drink one beer or wine one day a week, I eat one bite of my wife's dessert (the first bite is the most delicious), and I snack on Organic Simply Naked Pita chips.  Everyone is different and find a solution that works for them. 

A couple recommendations:

1. Keep a diary of your pain, the meds you take, and when you take them, what you eat, and any incidental data that seems to affect your pain or sense of well-being. When something changes go back and find out what happened.

Take your diary to every doctor appointment.  When I decided I wanted surgery, the doctor looked at my diary and wrote the order for surgery without any additional tests or recommendations (Insurance required evidence that more than two treatment options failed). 

2. Join a Facial Pain Group in your area to find support, to learn about the best treatment options, and recommendations for medical professionals.  I chose the same surgeon other members used, and recommended, because of their good results.