Trigeminal Spoons

Anyone???

Is this you? Reblog if so.

You know how people say "it was a freak accident"? Well that's how I started down the road to finally wind up with my diagnosis. After a strange accident, where I was an everyday activity that caused me to bite down on a foreign object with force. The pain started right away, but worsened for days. When I saw my dentist he said I needed a root canal with a specialist. I ended up having three! Afterwards, my pain just kept getting worse. Spreading to my jaw and to my head. It became severe migraine like head pain, but it was unlike anything I'd ever experienced before, it was so strong and came on so intensely that after having this "migraine" for four days I went to emerge because I felt like going to emerge was my only option. After running some tests they decided to keep me overnight... In the morning they moved me into my own room which made me realize I may be here a while. They kept me there for the better part of a month! During my time there I had doctors telling me they had a team of neurologists "scratching their heads over me." That's a real quote and that statement alone made me feel really discouraged and hopeless. When you want nothing more than to get back to your normal life, that's terrible news. My team of doctors and I eventually realized the injury and dental surgeries were the original source of the terrible pain and it would continue to get worse. This led to me being diagnosed with Trigeminal Neuralgia, also known as the Suicide Disease, along with Occipital Neuralgia. It's been the most painful, excruciating thing I've ever been through and it's not over yet.

Diddy - 'Pain'

How I feel about "migraine cures" on the Internet

I don't know about you, but with Trigeminal Neuralgia there are a lot of medications involved. I take medications for nerve pain, I take nerve pain medications, I take medications for migraines, anti-seizures, opiates, narcotics, slow release pain medications... And then I take medications to combat the side effects of those medications like laxatives and anti nausea medications and ones to protect my stomach and gut lining so I don't get ulcers... You get the point. A lot of these medications leave me in a daze. I don't think straight, I don't remember the little details I normally would remember. I forget words in the middle of my sentences. It isn't fun! One of the biggest problems with that is with the people around me. They don't understand that because I've taken medication, I think things may have happened differently. So when I'm having a bad pain day and I'm on my third dose of dilaudid and this time it's the highest dose my doctor has prescribed, and I think my husband has promised to make me some dinner and it's 9:00 at night and I'm starving, I'm going to get frustrated. What I don't realize is that he didn't promise to make me dinner, he promised to come spend time with me, and I said "can you make me dinner or just come and spend time with me?" He chose to spend time with me earlier. So we get into an argument. Then when I say he promised to make me dinner he says I'm lying. "What?! But you did promise me!" My foggy brain insists. Until I read the texts again and see that he didn't. So there's a problem in the communication about what medication does to a person. You see, my husband, who has never been sick in his life and has never even had to take pain killers or strong medication for anything, doesn't get it. He doesn't know what it feels like to really, truly believe something happened. He doesn't know what it's like to forget things completely (except maybe when he drank too much in college! Hey-oh!), and he really doesn't understand what it feels like to be called a liar when you could swear up and down that as far as you know, you're telling the truth. Once I felt better and wasn't on the dilaudid anymore I had a chat with him and he understood. I told him that I feel like I have the word liar written across my forehead and it breaks my heart every time he calls me that (this has happened more than once when I've been on my medication and out of it). He said well I guess we'll have to wipe that off there for you then. I think what us spoonies and chronic pain patients have to do is talk to our loved ones and remind them that when we're on our medication we don't necessarily have the brain power to remember the little details. There's a reason why these medications say not to drive while taking them! You're not as cognitively present as you normally would be. They also say not to mix them with alcohol, that's because they have a similar affect on you as alcohol! Anyway, I guess what I'm trying to say here is that communication between you and your loved ones is so important, whether that's your husband, wife, boyfriend, girlfriend or even your mom or dad, you need to tell them how this medication affects you, just as you explained how your illness affects you. It's just as important. Stay well, friends, I hope your pain is low today. <3

I have always thought of my chronic pain condition as a loss, and the stages of grief really spoke to me; however things were missing. This article tries to bring those things to the surface

Mmm delicious eggs