Where I'm at

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

Wow…lack of words for you at this moment. You are such an inspiration, a soldier , a human.

Yes, such an inspiration. I shed a tear while reading the lyrics. It's so true, right? Warm, healing thoughts and hugs.

Mimi- you are such a strong woman, you inspire so many of us! I can only imagine how you must be feeling. Having bilateral TN is overwhelming at times. I still have some type 1 pain, mostly mild, on the left side after my MVD. I know that might continue to improve, but I have type 1 pain on my right side since spring. I know I will not have another MVD anytime soon, so I need to keep the right side under control. It’s quite the balancing act we go through. I think there will be many times on this journey that many of us will need to stop and regroup and try to focus on the positives like you so eloquently do!

Mimi- you have such an amazing, strong attitude!! That is the biggest tool in our arsenal of pain relief! You have been on my mind, I hope that each day gets better for you.
The lyrics are beautiful !!

tiffanie

prayers and hugs

Always thinking of you and you are strong and indeed an inspiration. Thank you for sharing those lyrics, it was really perfect timing and I will keep them in my head and remember them! When it hurts to smile we can still have a smile in our heart. And since I seem to have a bit of an anger management issue I needed to read those lyrics :) Know the lost feeling, but we keep on. Take care wishing you the best!

Betsy

Oh my... It's been a while since I've been on, and after reading your post.. gosh. like KC said.. your post are an inspiration. such beautiful words. take care...

Gosh Mimi! Wow I am new to TN (about 4 months in) and I can imagine the emotional roller coaster of hopes and fears you must be on. I have felt many of these fears (along with the real pain) myself. But I wouldn't let fear cloud your real recovery. Yes, you were hoping for 100% relief but it sounds like you got 80%. And the right side TN could be triggered but it is quiet right now and for the foreseeable future. All you have to deal with is what is on your plate right now. Your doctor has recommended the massage for your neck muscles (what a great doc). When I project into the future -- that is when the fear gets overwhelming! Right now you are safe and sound. Keep everything else in your life as comfortable and pleasant as possible. We are all sending you love and healing Mimi. Just one day at a time in peace and healing. Tina

Thank you so much for sharing those lyrics. I really needed to hear that today!!

Thank you for this!

Oh gosh Mimi, that’s a lot to take.
I’ve found that Shaitsu massage is perfect for TN. It uses the meridian lines head to toe and the point work really allows for space in the muscles for healing. Also, it’s totally relaxing and so promotes the healing response as well. Get totally blessed out and that is critical for adding a much needed dimension to my life.
Keep Heart
Hugsssssss
Bellalarke

Thanks so much for all the support and kind words…
I’m doing ok, really very tired, seems I can have a productive few hours in the a.m but by noonish I’m done…could be the extra 200 mg Tegretol could be who knows what…
I have a massage therapy appointment set up, so we’ll see how that goes.
The tiny rash is still present, causing some discomfort at the site.
My right side has remained quiet, thank the good Lord for that!!!
Left side hasn’t gotten above a 2/10 .
Have started taking fish oils again for my omegas. And just this morning I’ve started taking a teaspoon of maca powder in my protein shake to help with some pre-menopausal type symtoms and overall health benefits.
Hoping things start improving…
((( hugs ))) Mimi

The tegretol sure took the motivation right out of me.Just take it easy and don't worry about production! ( : Laying off the coffee and sodas really seemed to help me immediately.But it could have just been time for the beast to hide or more recently the Gamma procedure to kick in.Thanks for all your helpful positive posts.You've helped more people than you'll ever know.Prayers and positive energy going to you from Texas!Don

Hi Mimi,
Sending you gentle healing hugs and hoping that your pain reduces. Thanks for posting the lyrics of smile…made me cry and smile at the same time.

Take care and I am truly sorry that the pain has returned.
Trish

I'm sorry you're having pain! I hope that you're able to find some relief and that the twinges you are having disappear. Thanks for posting positive words eve when you hurt. It's most helpful! I'll be thinking of you!

At one time, I needed baclofen added to tegretol and it seemed to work very well after an initial week of feeling pretty groggy. I hope you get better soon.

Sounds so tough....I can't imagine life with bilaternal TN. How on earth did that happen? :(

"Smile", love that song...But, it does hurt sometimes! You said, "right now it's manageable"...Makes me think of that old song, IS THAT ALL THERE IS?

Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is

Classic version by Peggy Lee (google it)

The STRONG Do Survive, Thanks for the update Mimi you are amazing!

Lynsey

great song !!