The most I love about this site is that when someone is really in trouble like Mimi is now sooooo many of the family jump in and send love and hugs and kisses. Mimi my heart is with you, my love is with you and I pray really pray that your MVD will happen soon.
All my love.
Much love hun xx
Dear Mimi-
I know 5 days have now passed, but I wonder how you are feeling. Why must you wait so long for mvd? You are suffering terribly. I hope that you can find some relief at some point throughout your day.
By the way, I broke down the other day too. I felt a new pain, well a new point of pain anyway. May pain seems to evolve, recently it hit me like someone was twisting screws into my cheeks. I was still in my office. In tears. Thinking about how I’ll feel 30 years from now with 70 year old health issues and this, wondering if I’ll still be able to handle it at that point.
I am finally free of pain...this last nine days has been horrible
and level 10 in pain...meds one after another and upgrade those levels...finally I can say I am over the edge...it is one nasty issue. And I also wonder how I wil be doing in 7 more years...making me 70....its alot to take in...but today is today and tomorrow I will deal with it then...It is a heavy time....Keep a journal of how your day is going and what meds so when things go good you can look back to see what you were doing different. And get a good doctor, one you can call and know theyare really concerned and listening...Blessings as you go forward...
Hi cveltri, Geandma honey … and EVERYONE else too!
I really appreciate your notes here… : )
I am getting a bit of a break each morning from the intensity of the pain, which has been soooo wonderful.
However by my midday dose the pain intensifies, and the drugged up heaviness settles in, I feel very off, very medicated, yet no pain coverage after 12pm…I have been falling asleep most late afternoons , I actually feel the heavy sleepiness overtaking me as I type this… So I’ll keep this short.
It’s still early days yet, I usually give each increase up to 10 days to settle in…hoping this will kick in soon.
As I mentioned above,my surgical papers arrived, so I am thinking because my situation has worsened, my name might be called next.
Cveltri, my neurosurgeon is one of the best, and with that he has a wait list a mile long of people who travel near and far to see him. He specializes in TN and cranial disorders specifically. The wait wouldn’t be bad if my TN wasn’t worsening each day…but they are very kind and understanding. Hoping its soon.
((( hugs to all ))) Thanks for thinking of me… Wish I could write to you each individually…going to nap now, xoxox
I dont know how many times I have been there myself. Just when I think I cannot take it anymore something comes into the picture that just lights up my life. I will try to send some positive thoughts your way, in hopes that you benefit from it.
Something will change. Something will bring a partial smile which will bring that 10/10 to a 9/10. Not much, but we all know how much of a difference that is.
Just look at all of the responses. There are people out there you have never met, that experience the same or similar pain. We all support you even though it is virtual, it is far better than nothing.
Peace be upon you.
Smash
Thanks for sharing this, your story is quite impressive. I'm sorry to hear this came back after being gone for so long. Still though it is good to know that this thing can be beat even if it's for a fixed amount of time.
Going to reduce the Dilantin slightly…headaches as a side effect are just not tolerable.
Thinking the dose was too much too soon…I see the doctor tomorrow morning to discuss.
Thanks Smash, 
@Nick, have hope, be positive, be informed.
Mimi, So sorry to hear what you are going through. I hope your doctors appontment goes well and he can adjust the meds to help you. I also hope you get to see your nuerosurgeon soon and get help from him. Gizmo
:( Gooood luck Mimi!!
Thanks Min & Gizmo.
Saw the doctor, agreed that taking away 1 pill was good idea…says 72hrs is normal time frame to see reaction to Dilantin. Am in so much pain today. …off to bed with heating pad.
Update in a few days, Mimi
Good luck!
I take a LOT of pills too, so i can relate
Also having 10/10 pain and hanging on by a thread myself. So I get it. Knowing that I've got my doctor working to schedule a RFA is the only thing giving me hope at the moment!
Horselip
Mimi the most positive of vibes to you, yes pain control is the most important thing but the side effects just suck. I hope your MVD comes ASAP. I am 2.5 mnths post MVD and want all of you to be where I am starting to get. I was on 21 pills a day and down to 11. Soon to start decreasing again I think. Don't worry about us but but we all know you really do. You need to take care of you right now and were all there for you. Biggest hugs of positive things to come
Linda
Mimi,
I am just thankful for YOU and your honesty. Thank you for letting us know how to walk through this one day at a time. Bless you.
Mimi
You are such a supporter when we all are suffering...YOU, my dear are the hero - having to wait without knowing when / what will happen!!! I had no idea you had to be put on a wait list!
Hitting that same wall; do you hear me knocking from the other side???...this disorder / disease is progressing at a fast rate...ummm, cure please!!!!!
We all are here, my friend - just know you are in my thoughts and prayers!!!
Drugs baby, DRUGS!!!!! :)
Cris
Awww, thank you so much, EACH one of you. Such kind words, I’m feeling the love, and I really, really appreciate it!!
You all know, how isolating this pain can be, so finding all these words of support is like a giant gentle hug for me.
I’ve had a few good days, not in a row but who’s complaining?! Not me!
I feel like this current med combo is helping ease things a bit, I’m definitely not as bad as I was!
Just hoping this little reprieve lasts…crossing fingers and toes.
Thank you Helenann, <3
(( horseslip )) <3
Cris, I hear ya knocking! ; )
Linda! So pleased for you! Continued well being!!
Smash, thank you, you’re absolutely right!
Many (( hugs )) for you all, we get through this together…I’m very grateful for LwTN and all of you.
Mimi xx
Praying
Hi Mimi
Have just read this thread now and so am thinking about you this morning over there in Alberta. You have a lot of courage and heart. Wishing you a day as good as it can be and that your MVD is just around the corner.
Bella
Hi there Mimi,
Back in September I was in the same situation as you. I have TN, ON and TMJ very bad. I was a 10/10 everyday, and I was seeing one of the best neurologist on the Island (I live in Hawaii). But I started going to pain management and omg what a breath of fresh air. Twice a month I get about 15 injections just about everywhere and it has been a huge relief. My ON has simmered down quite a bit. But my meds make my joints swell and hurt in my upper back. They are now suggesting I have RSD as well. So anyways, I go to pain management quite often as well as physical therapy twice a wk (find someone who knows about TN and does manual therapy) and those two things have helped save my life! I will be praying for you sweet Mimi for relief. We all know that pain all too well and it’s just unbearable! I’ll keep you in my prayers and everyone here in Living with TN.
God Bless you,
Amy