My MS seems to be more active the past few days. Every time I think about dropping a medication, I have a bad day or days. I like to imagine not taking one of my meds.
Today it’s my most severe pains: the right side of my head, and on a scale of 1 to 10 right now it’s about an 8 and I’ve taken my pain meds for the second time today, and yet the pain increases. I’ve read about this issue. My doctors have never given me any kind of diagnosis, because it is so atypical.
There is a bunch of nerves on either side of your head, the Trigeminal Nerves. Various branches cut across your face at the forehead, eyes, cheeks teeth, tongue, neck and throat. Trigeminal nerve pain is reported to be some of the most severe. There is typically two types of neuralgia of these nerves; both forms are typified by the regions of pain, how easily the pain can be set off (by a hair brushing across your cheek), and by virtue of this transient pain, lasting mere seconds, to minutes.
My pain comes in the morning and stays all day for as many days as the ms wants. Certainly not one of the more familiar type neuralgias. Maybe that’s why the docs have all shrugged when I mention it. One said, that pain in my head didn’t correlate to the lesions on my brain, but the pain is there, and as all MS’ers know; location and number of lesions does not necessarily correlate to the frequency or severity of your symptoms.
It’s my own diagnosis of Trigeminal Neuralgia caused by the MS. It’s the same nerves, the same level of pain, just the duration is different from the more usual forms. I know I’m not the only one with this pain, and I’m sure for many the pain is worse or more frequent. I am lucky because ms generally attacks both sides of the body with equal vigor, and so far my left ear has never been as involved or as painful. The day I have a level 10 pain on both sides of my head is going to be a bad day indeed.
One of the toughest things is sleeping when this nerve is inflamed (or active, or acting bitchy) I can’t stand the weight of my own head on my ears. I need a pillow with a hole in the middle where my ear goes. There aren’t many pillows made for this kind of problem and it took years to find my hole in the middle pillow, and now it’s getting sort of beat up, no pillow case currently made fits it, and so I have to wash the pillow frequently.
Since my MS diagnosis 5 years ago, I’ve figured out I’ve probably had MS more than 25 years. The pain on the right side of my head has been increasing in severity and frequency since 1990. The issue with my hands has been coming on for at least that long, it just wasn’t as disabling then.
That tells me my MS is very slow moving. I have been having the almost the same symptoms in the past 5 years since my diagnosis. I’ve found some symptoms coming back after 20 years, realizing now that it was an ms symptom. A few have disappeared, some have subsided, some have gotten worse, and I’m somewhat prepared for new ones down the line. But today my right ear hurts and I just want to feel better. 🙂