Tuesday, May 4, 2010

Afraid to eat

This is one of those days when I'm afraid to eat, and here's why.... When I woke this morning, I felt ok, but then after speaking with others in necessary conversations, the tongue started really stinging. As soon as I had a chance to take a break, I made some weak tea with honey. That was a big help - I also had a Bee M.D. honey throat drop. Even better. By 11am, I was basically pain-free. Wow! Problem was, I hadn't eaten anything yet, and was starving. It's the weirdest feeling - knowing you need to eat, but wanting to avoid it, because you don't want to change the temporary happy quiet of your tongue.

As it is, my menu choices are already extremely limited, and I'm already seriously underweight. Diagnostic testing at the orofacial pain clinic showed that I feel things twice as much on the left side of my mouth and face as on the right. So every taste, sensation, feeing - from the wind blowing to spicy, salty, caffeinated, or crunchy food - is like SUPER intense and hard to tolerate. Ice cream and smoothies are big favorites but hurt so much now, for some reason coldness is very irritating, so ice cream is out.

Every single meal has to be planned, thought out, bland and boring...add to this the difficulty chewing, and some of the meds I was put on killed my appetite. Put all of that together, and I find myself about 10 pounds shy of what would be considered a healthy weight.

I have been chewing on the right side only for 5 months now. Five months! I'm starting to wonder if my facial muscles are going to permanently change from this. I did notice my left side drooping 2 months ago, and asked the Doc, thankfully Bells Palsy was ruled out. But I started doing physical therapy for my buccal muscle of the cheek/face, and although it's uncomfortable, I think it's helped "reactivate" the left side of my face, muscle wise.

(Nerve wise there's already wayyyy too much activation going on!) So, I finally ate a sandwich and some cold slaw for lunch, but now, of course, the tongue is burning again. Sigh.


  1. in order to keep the muscles of your jaw balanced I started using a bite guard for sleeping. This keeps balanced pressure on all teeth while you sleep which helps maintain facial muscle tone. I also went to a wholistic chriro at around 5 months and he found that one side of my jaw was out and popped it back in place. My doctor, an oral surgeon, and a massage therapist all missed this! I ate a lot of room temp quick oats for many months, this is one food that will never start the burn.

  2. your pain and temperature sensing neurons are injured. this is why cold really bothers you. cold allodynia is a hallmark of neuropathic pain. people with nerve injuries sense pain at cold levels markedly higher than healthy controls. for example, a study showed healthy people with no nerve injuries sensed pain at cold temps reading 4 degrees Celsius, while nerve injured people felt pain at 23.4 degrees celsius. that is a huge difference.

    hyperesthesia is also a feature of neuropathic pain, this is super sensitivity to external stimuli.