Touching base, it's been awhile

General General TN & GPN (Old Site)
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Dear LwTN friends, old & new,

I’ve truly missed being here daily and interacting with you all.
It was not a conscious decision on my part to retreat …I think I started to isolate myself late Spring, not just from here but from everyone as part of my ongoing struggle emotionally with my unmanaged TN.
I became depressed.
Something I had never truly encountered before, oh sure I have been sad, mad, angry, frustrated over the years, but I always managed to be positive and hold onto hope for better days ahead…after many med changes and no results I hit bottom.
I didn’t know how to deal with this person who was no longer positive or hopeful. So, unconsciously I started to retreat.
I stopped answering phone calls, started lashing out at my loved ones, regretting it minutes later, feeling guilty, overwhelmed, and generally did not like who I had become.
I became hesitant to participate here as I felt like I had nothing to give, share and no positivity.

My TN is still unmanaged, after 3 years on long term disability with my company I recently was approved for CPP Disability
( Canada’s version of SSDI) I was relieved that I wouldn’t have to go through the appeal process, but had mixed emotions as I’m only 42 and I loved my job, and this just brought the reality home that I wasn’t returning to my job anytime soon. Duh! You would think after 3 yrs I would have accepted that by now…but apparently not.

I recently tried Botox for the first time, my Neuro referred me to a colleague of his who is a dentist/oral pain specialist. I had the treatment almost 2 weeks ago and haven’t really noticed a change yet, but apparently it can take some time before change is noticeable…so I wait and pray and hope for even just a slight change, relief from the relentless pain.

The last 3 years since my TN came out of remission and became progressive med resistant I was spurred on by hope & positivity. As the options of things to try dwindles reality is setting in and I now find myself in a place of struggling to find acceptance.
I am working very hard on accepting who I am now, what my life is like now and looking for ways to get to know this “me” and find purpose, joy, and pieces of the old “me” that I’ve lost or tucked away.

I’m not hopeless. Not anymore, I do still feel hope for the future,
It just takes more effort than before.
Living with TN is not easy, but we learn as we go, one day at a time and thanks to support groups like these it is made just a bit easier thanks to your friendship, empathy, commiseration & understanding.

As the year comes to a close I just wanted to wish you all a Merry Christmas, and best wishes for a healthier & happier 2015.

(((( hugs )))) , Mimi xx

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Mimi
Glad to hear you are starting to feel somewhat more positive. Good for you. I used to be thankful even if only for a few minutes of peace in my head. You know that strange feeling when you suddenly realize that TN took a short break

Here is hoping the Botox gives you some relief

All the best to you this holiday season.

Chippy

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Oh honey… I know its hard to get to the acceptance stage at your age.
Acceptance for now. Something will be discovered, in your lifetime… You have to believe that.

I havent been here much either.

As my TN is holding steady, i now have to accept that my new

neuropathy
chronic fatigue syndrome
And memory issues from stroke

Are here to stay

But Hoping in this lifetime
That something better will come along

All we have is hope

And it comes and goes

Do you have anywhere near you,
An in-person group for chronic pain?

Or maybe just get your own therapist.

You can write me here too!

Happy holidays everyone here!

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Thank you for taking to time to write to us, Mimi. Merry Christmas to you !! Please stay positive, we all need you!!

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Mimi,I'm so sorry to hear of your bout with depression.You have always been the torch of hope and kindness here.Your sweet personality has always shone through and it still does!

Just a thought.Does anyone offer the stimulator up there in the great white north?It was to be my next procedure.The doctor was a pain management specialist in Dallas and had great results with treating TN 1.

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Welcome back. Mimi and thank you so much for sharing your journey. This TN is a hard thing to deal with, and I’m so glad you are feeling more positive. I wish you a merry Christmas and a pain free 2015

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Hi Mimi,
I am so sorry to hear what you have been through, but I am glad you are back on this board, as you have always been such a great source of information and compassion to all of us.
I see that Don suggested you look into a nerve stimulator. I have one and it is wonderful at managing my pain. If at all possible, I would urge you to look into it. The best place I found for information about them is a Facebook page called Occipital and Peripheral Nerve Stimulators.
Best regards
Christine

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Thank you Chippy. : ) hope you’re doing ok?
KC, I’m sorry you’re dealing with more health issues, sigh. … I am fortunate to belong to a great TN support group that continues to grow. I’ll definitely write you girl!
Thank you Catwoman, hope you’re well… :slight_smile:
Thanks to you too Sunshine, enjoy your Xmas !
Don & Christine, ever since you’re success Christine, I’ve read and enquired about the nerve stimulator, however to date haven’t found anyone willing and able…I’ll definitely look further into it.
Thank you both for your kind replies I hope you’re both well and enjoying life!

Really appreciate all your replies! Really do miss all of you, so nice to reconnect!

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Hi Mimi,

Thanks so much for sharing with the community. Being honest and vulnerable here in this supportive community is a way of healing or at least coping. As always, I am sending you hugs from the prairies.

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Mimi, I remember you. I retreated as well. I went into remission and stopped posting. I felt guilty that I was well and others not. I also did not want the reminders. Now I am back, out of remission and wishing I still had my connections.

I hope the botox works. And I hope a better treatment comes around for all of us.

Merry Christmas! Wishing you some pain free time for the holidays.

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Hi mini, so sorry to hear how you have been struggling. Am happy to hear you are doing better though and are dealing with the depression. It just sort of sneaks up on you and you don’t realise what is happening until it has you. Like the pain isn’t enough to deal with. Fingers crossed the botox offers some relief for you especially over Christmas.
Sending prayers your way for a peaceful Christmas so you can spend some quality time with your loved ones.
2015 is going to be the best year ever and there will be a miracle cure for this awful condition. Can but hope !
Merry Christmas and all the best.
X

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Mimi

My heart goes out to you. You are such an inspirational person and yours is a log which I am always eager to read. Its time now for us to support you. Please drop me a line at anytime, doesnt have to be about TN we can talk about anything.

Your friend

Elaine

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elstep said:

Mimi

My heart goes out to you. You are such an inspirational person and yours is a log which I am always eager to read. Its time now for us to support you. Please drop me a line at anytime, doesnt have to be about TN we can talk about anything.

Your friend

Elaine

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How well I know about the acceptance lever. I have more going now than I think I have ever had. You see I teach a teen class at church, God has such a since of humor, just have to keep telling myself He know what He is doing.

When I have a full blown attacked I have never felt any think it. So falling up stairs and forgetting more than usual is normal, I like that word normal, I like something normal in my life right now. I am in constance pain and some kind, I have to take my teeth out to eat, (that's pretty) I keep bitting my lower lip, I can't feel them. and for some reason even my false teeth hunt when they are in. At this stage I am almost hopeing for something terminal, I know that sounds bad but that's fact.

Thank you for letting me dump on you.

Mary Ellen

kevinjenny9310 said:



elstep said:

Mimi

My heart goes out to you. You are such an inspirational person and yours is a log which I am always eager to read. Its time now for us to support you. Please drop me a line at anytime, doesnt have to be about TN we can talk about anything.

Your friend

Elaine

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Mimi,
I am touched by your sharing… so honest and real, yet hopeful. I am sorry you are still having pain and struggling to find relief. You are an inspiration. Hold on tight to that hope.

TN has also caused me to withdraw from friends and others. Now, post-MVD, I am trying to reconnect and seeing the potential long-term consequences of my distance. I hope we can pick up where we left off and they can be salvaged. If not, I will re-evaluate the value I place on them, and the time and attention I give them. One thing about TN, it helps you prioritize and focus on what is most important. It has led me closer to God and I am eternally grateful for the joy and peace I feel now. I have never been more grounded. When every aspect of your life is stripped bare, the illusions fade away. The truth in our world view is a gift… a hard earned prize for being strong enough to live through the pain and loss. This I know for sure. I am now working on fully accepting it and wondering how I can share it. There must be a purpose for having such a gift.

All the best to you, Mimi, and my fellow TNers in the New Year!! – Juliet

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Hey Mimi..Welcome back..sometimes we just have to disconnect for a while. You are back, so you have made it through, at least partially, Many of us that celebrate Christmas, for whatever reason,secular or religious, wish to be with family during the holidays. So, Welcome back to the TN Family. Happy Holidays. Hey, I just checked up on the weather in Alberta..30 F..Like springtime for Alberta.now that is a reason to celebrate

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Hi Mimi, thanks for checking in and pming me. Sorry to hear about your struggles, it's really hard not to get depressed in this situation. Did you ever have any luck with any tricyclics?

I never got anywhere from all the doctors I saw. I don't have any follow ups scheduled and the only doctor I've been seeing for quite some time is a psychiatrist who writes my nortriptyline and venlafaxine.

When I pulled my records they didn't even mention face pain, just severe depression. Bastards.

I still work, I have had to take days off cause the pain just wouldn't let up. Off and on, I get a few weeks of pain and a few weeks of relief here and there.

I smoke a lot of pot now, 5x more than I ever did, it helps my attitude a lot and pain relief. I realized the venlafaxine was making me very agitated about everything. I looked it up and noticed it's a big side effect. I bought a pound of pot from some medical growers here in Seattle for a great deal and have been pretty happy since lol.

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((Patty)) hugs right back!

Lisa, I’m so sorry you’re out of remission…I hope it settles down once again for you…the nice thing about our LwTN community is that everyone is so welcoming and understanding. Positive thoughts to you!

Boris, thanks for your prayers, I can honestly say I’m noticing a reduction in pain and frequency now…is it the botox? I hope so. I’m feeling hopeful, how are you doing?

Elstep, miss you! Are you well? How are you making out these days? I will most definitely write to you soon and we can catch up! xo

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Mary Ellen, oh I know exactly what you’re saying…any kind of normalcy is great…living with TN everything feels out if control so having a bit of routine is always welcomed by me. The roller coaster of emotions never really ends, but it does get better at times. I’m so glad you’re working with youth in your Church. Being able to contribute in anyway to society and youth is a wonderful gift. One moment at a time, hand in hand we go …(( hugs ))

Juliet, very well said!! It all resonated with me. I feel very much the same, always have, that’s why this past year was so difficult to understand, I just wasn’t used to being or feeling so down, bleak etc… It’s like I had to get to know a new version of me, the good the bad and the ugly in order to get to this place I’m at now. I truly believe the journey although difficult, has taught me a lot inadvertently about myself and life. I think the struggle for me remains in finding my place, my purpose amongst the chaos and pain. ((Hugs))

SFBill, have missed you as well! I love your analogy of coming “home” for Xmas. Thank you. Yes!! The weather here has been unusually mild this year and quite enjoyable!! It’s about to cool off today to -17C… Hope you are well!

Lee, I did receive your note, sorry I haven’t replied. With the tricyclics I have tried, no positive results unfortunately…but I would consider and have thought about trying again. ( my plan B after this Botox trial) . Sometimes things don’t work the first time and I’m always up to try things again just to be sure.
Sorry to hear about your continued struggles as well. Sigh…but I’m glad you at least have a doctor for prescriptions and that the pot is helpful. Maybe a bit of a rest of searching for a doctor/specialist to support you and in a few months you can try again. It’s all very frustrating at times…I’m starting to notice positive affects from the Botox so I’m hoping it will continue…one day at a time. (( hugs))

Happy New Year to Everyone, thanks for replying, I look forward to being here more often. xox

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Mimi I am still in remission its been over 3 years now. Why do I still drop by? Because I have friends here like you who I care about so much and who were there for me when I needed them. When I read that yours and Lisa's has returned it frightens me but makes me very grateful for every pain free day. How would I cope if that day happens I dont know but I do know that you and others would be there for me. Were here for you. X