The ramblings of things that make me…um, well…me.
I decided to write this post on a whim, so I’m not sure where it will take me. Just get in the car and let me drive, okay? 😉
Today, October 7th, is National Trigeminal Neuralgia Awareness Day. If you don’t know what Trigeminal Neuralgia is, click HERE and read…go on…I’ll wait…
Okay? So, now you know what I’m talking about. Now you are aware. Right? Good.
As I shared in a post a looooong time ago (A journey I’d never expected…), I suffer from TN. Instead of typing out my story all over again, I’ll cut and paste it here…
July 2010 – The Book Hipster family is visiting family in Michigan for about a week. As I’m washing my face one morning, I get this shock of pain in my right cheek/nose area, which I can only describe as what I think it would feel like to be given a mild dose of electro-shock therapy. It was painful, fast and totally unexpected. And it only happened once. I shake it off and don’t say a word to anyone as I think it was just some weird randomness that my mind may have created in my sleepless haze.
A couple months down the road, it happens again…except this time, it isn’t just a one time incident. This sharp electric-like shock happens on and off for one to two weeks. Sometimes when I’m washing my face. Sometimes when I’m eating. Sometimes when I’m brushing my teeth or blowing my nose. Same area. Same horrible pain. And then it is gone.
Now, this happens almost on a regular basis for about 9 months. And quite honestly, most of that time I didn’t have health/dental insurance so there wasn’t much I could do about it because going to the doctor is hella expensive when you don’t have insurance and the pain wasn’t that bad (Ok, it really was, but I just would tell myself it wasn’t in order to keep myself from giving us an added bill to pay off). But at about the 9 month mark of this happening at random a strange thing happened. It came back…about a million times worse than it had ever been…and it wasn’t going away. The pain wasn’t completely constant, but it was always in the background waiting to strike. Itching my nose would make me gasp. I had to start chewing food (and softer stuff at that!) on the left side of my mouth because if I chewed on the right side I’d be in tears from the pain. Brushing my teeth…holy mother of all that is evil…I’d be whimpering the whole time! And this was all in one, yes ONE, week.
About 2 months before (so, January) we had put me back on the insurance with the enrollment period, so when my week of torture began I could actually do something about it. Thinking maybe it was a cavity (as it seemed to involve my mouth/teeth area more than anything else) I make a dentist appointment. Dentist takes x-rays and does a thorough exam…he cannot find any reason for me to be having this pain. No cavities, so issues that he can see. He refers me to an Endodontist…oh yay…a specialist! The Endodontist not only looks at the x-rays I brought from the Dentist, he takes his own and does a thorough exam of my chompers. Yeah, he couldn’t find anything wrong either. Crud. Now what? The Endodontist says that he CAN do a root canal, but quite honestly feels it would be unnecessary as it might not fix the pain issue. He thinks a better option to start is for me to see a Neurologist (um…wait…what?????) because there are all sorts of nerves in the face and it is a possibility that it could be nerve related. Oooooh, boy!
I spend the next day calling local Neurologists trying to get the earliest appointment I can. I have to wait a whole week to get in to see one. A WEEK!!!! One more week of pain before seeing someone. I want to just die the pain is so much some days. One good thing (or bad depending on if you’ve ever done it) is I decided to go online and start looking up face pain. Yeah…if you’ve ever heard the phrase “Never look up health issues up online”…it is totally true and you should never do it. It is scary as all get out! I was getting all sorts of things. But I did find one thing that was me right down to the crossed ‘t’s and dotted lowercase ‘j’s. Trigeminal Neuralgia. Whatever site I was on was what I had been experiencing for the last 9 months…it was almost like someone had been following me around and writing a blog about it. It was quite scary! Even worse…I started searching for that disorder specifically and reading all sorts of treatment options…one involves drilling a hole in the skull behind the ear (Yes…the EAR!!!!) and inserting some cushioning “pads” or something into the area for the nerves. OMG…I was freaking out! I’d never been so freaked out in my life. Even when I was pregnant and the doctor couldn’t find a heartbeat at 12 weeks (and then after rushing to the ultrasound room we found it!). After finding that, the computer went off and I waited until until my Neurologist appointment to happen. And I wasn’t going to tell him what I had found online either. I wanted him to hear my story of what I was feeling and have his decide what he thought it was. Yeah…he agreed with my thoughts. I had Trigeminal Neuralgia. Yay.
That was March 2011.
That catches you up on my back story…
As you can imagine, this has been an interesting things to experience.
I have to be careful when I put lotion on my face. Or wash my face. On a bad day, brushing my teeth, while necessary, is a slow process with lots of wimpers. I had to stop playing my saxophone (not that I was doing that much to begin with, but at least the option was there). I haven’t touched my flute for fear I won’t be able to do that. Whistling can be an issues sometimes. or just humming…so many things have to change with TN. It is almost like starting over, in a way. You have to retrain yourself to do things (or to stop doing them) depending on how they affect your pain. Also the weather can affect TN…when the temp drops (like right now with Fall here) I can feel more aches in my face. Winter wind is horrible! And I live in Chicagoland! I’m usually in tears by the time I walk from point A to point B.
As far as treatment…there are lots of things. Including surgeries. Right now, I take two anti-seizure medications (for pain management) multiple times a day, plus Ibuprofen for my regular aches and pains. Even after all that, there are times I still get throbbing or aching or pain in my face that makes me want to claw my skin off. I deal with it, though.
Medications are fun. So many side effects to worry about. You feel tired. You feel loopy. You get skin rashes at random. You feel emotional (up and down…crying on a whim over silly stuff like Kidlet singing in the backseat to “Somewhere Over the Rainbow” while you are driving somewhere). You have memory loss. Not just “oh, I forgot why I walked into this room”, either. I’m talking “Sorry I stopped mid-sentence and stared at you blankly because I can’t get my mouth to speak the word I see in my head” memory loss. At 31 years old…that is SCARY! Now, a few years after being on the same meds, I don’t have a lot of the side effects, other than the tired and emotional feelings. I cry a lot more than I used to. Although, I was emotional before the meds. I think they just made it worse. He he he…
Another interesting thing I experience is my face feeling swollen. I remember the first time I ever had that feeling and my co-worker looked at me like I was crazy (well, more than normal…ha)…It felt as though the right side of my face was twice the size of my left side. The weird thing is if I look in the mirror when this happens, the regular side of my face looks puffy. Hmmmm…odd.
I guess there is no real point to this post other than to let you know that if you suffer from this disorder/sickness/whatever you want to call it…you are not ALONE. I had never heard of TN before I started having issues. I felt alone. So I went to find others. I found a couple blog posts, similar to this, where they just talked about how they found out they had TN…or what they were doing to ease pain. I also found a Facebook Support Group (which hasn’t really garnered much except one amazingly fantastic friend), and others here and there in my offline life that also suffer from TN, or at least know what it is. Everyone’s TN is different, and everyone’s treatment for TN is different.
You are not alone. Ever. If you are reading this and you suffer from TN, say hi. I don’t bite. Mostly cause it could cause my TN to flare. 😉