Limitations and Lethargy

My life has changed so much since my diagnosis. Atypical Trigeminal Neuralgia has leached the energy from my system. I am 28 years old and I need to nap a few times a day. Seriously, I am only 28! 

I am so tired all the time, and there are some nights that I get a few hours of much needed sleep, but the way I feel now, I could sleep for a week straight. My dose of Amytriptyline has been increased so I am taking 100mg at night. This is effective mostly. There are nights that I wake up and I want to scream. 

It feels like Freddy Krueger has torn open my face and attached jump leads to every nerve. Showing that I am in pain is exhausting, but pretending that I am ok is completely draining. 

Is it the medications that are causing this lethargy? Is it the fact that I have constant extremely bad facial pain? Is it a combination of the two?

I never, ever would take a nap during the day. Even when I was younger and I had a raging hangover, I would still get out of bed and do something constructive with my day. Sometimes when I was quite ill I would have to stay in bed, but I would usually watch old movies all day, feel sorry for myself, but I wouldn't nap.

Napping makes me feel like a child, but it is something that is necessary to function. 

I have realised that there are limitations now, I can't do everything that I used to do and making peace with that is difficult. I have to be kind to myself, and everyone that has Trigeminal Neuralgia or any other chronic pain conditions needs to do the same. 

Meds Meds Meds

Well after seeing the pain specialist in hospital during the week, I am on a new cocktail of medication.

I have been taken off Lyrica and instead put on Gabapentin and Baclofen. So my new regime is Tegretol, Gabapentin, Baclofen, and Amytriptyline.

I hope that there will be an improvement, even a small one that will help. This pain is getting progressively worse as the weeks go by and it is frightening.

The pain specialist is brilliant. He knows what he is talking about and even though I have heard fantastic things about him, I decided that he is worthy of the praise. It's the same guy that performed the failed nerve block in hospital. He is hesitant to do any procedures and surgeries yet. The reason mostly is that my TN is Atypical. He is hopeful that we can control the pain. He is not patronising, and he really understands what living with chronic pain is like. He has enough empathy to relate to his patients and believe me that is invaluable.

There is nothing worse than dealing with a Dr. Doolittle that is sarcastic, crass and rude. I dealt with such a person while in hospital, and it took a tantrum (okay, it was a big tantrum) and a chat with the ward sister for him to cop on and treat me like a human being in pain, rather than a child on the naughty step. 

It's amazing the pain that the human body can take, and how much pain the body can produce. I am fucking sick of it.

I have been on this new medication combination for a few days, and it is not nice, the side effects are quite bad, I get confused and lose my balance very easily, and I have pains and aches in my hands and feet. Unfortunately, my eyesight is yet to improve, but I am still hoping everyday that the pain will ease a little and my full vision will return.