Well, I saw my Neuro yesterday…such a great guy, I’m very fortunate, he’s very supportive and really listens.
Needless to say he was disappointed to hear I had pain on my mvd side, and that I had to increase my Tegretol by 200mg. That extra dose is not covering the pain completely, but it’s enough for now.
We discussed what happens if it’s not enough anymore…we’re both hesitant for me to increase one more time to my max dose of 1600mg. Due to how it makes me less able to function, and because its my max dose due to my bloodwork and my liver…Instead he wrote me a new rx for Baclofen should I choose to fill it…right now it’s manageable, hopefully it will stay that way.
The mysterious tiny rash has everyone stumped so he’s referring me to a dermatologist just to be sure…could be what’s aggravating the TN, no one really knows.
He’s also recommending massage therapy in response to my complaint of pressure type pain on MVD side at the back of my head. He’s thinking it might be due to the muscle healing from the MVD, it can get quite tight, thinks this might help.
Through all of the above, I’ve still managed to think positive, I mean I’ve definitely shed a few tears, but for the most part I’m controlling the stress and worry. What made me come a little undone is…
My right side TN1 woke up!!!
Ugh! Seriously?!
It has been quiet on tegretol for 3 years since it came out of remission.
A few nights ago, my left side quieted down and all of a sudden I felt twinges of the beginnings of a flare on my right, it threw me off. Knock on wood, it hasnt happened again since…
Those few minutes of “twinges” have thrown me off balance completely and I’m a little lost emotionally.
I’m just not sure about anything anymore…I really need to re-group…
Last night my husband and I attended a concert by a Canadian crooner named Matt Dusk, ( like Buble) I bought the tickets months ago, not anticipating a return of the pain. But I pulled up my bra straps ; ) and went…I’m glad I did. We had a good time, ( yes I had pain, but it just tired me out more than interfered with my enjoyment)
Middle of the show, he starts singing “Smile” an old Nat king Cole song, and I burst into tears…I’m posting the lyrics…you tube the song…my fave version is by Natalie Cole.
" Smile "
Smile though your heart is aching
Smile even though it’s breaking
When there are clouds in the sky, you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through for you
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll find that life is still worthwhile
If you just smile
That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll find that life is still worthwhile
If you just smile
(( hugs )) Mimi xx