So far today, no pain. So far today, no problems with depression or anger. I feel good, except for the hand twitches and the general sense of being drunk. So why don't i feel better about having TN?

I've noticed that when i talk about TN to other people, that i sound whiny. I sound like a "victim". I hate that. That isn't who i am. I've always been the one who could handle anything and anyone and "yeah bitches, bring it on!" Now...*sigh* Now each day i wake up fearful of how today is going to be. Am i going to hurt today? Will the sadness crush me today?

I don't like being a victim..and some days, i get angry and decide that i'm not going to take it anymore! That i'm not going to just be a victim of TN! That i'm not going to wallow in the fear and pessimism.

And then...i'll have a flare of breakthrough pain and/or a seriously bad bout of depression.....and i'm right back in the 'victim' seat.

I have a neurologist appt in a few days, am i'm trying really hard to get out of the 'victim' mindset. I really need this man's help and i really want him to take me seriously. And i really want to convey a sense of "you work for me." to him. I don't want to be a victim begging for his help.

Well...i don't want to be a victim at all, but i keep falling back down into that chair.


(( Mistee )),
I understand. I do.
I’ve struggled with this whole concept as well.
I think I’ve found what works for me…sort of.
I say “sort of” because no matter that I’ve come to find a different way to think about it, it’s still a constant effort to learn and remember…
Truth be told I am a victim. You are too.
We are all victims of a beast called TN.
We can’t change what happened to us and not be a victim anymore, it’s happened .
No more can a victim of sexual assault, robbery, or any other form of victimization change it.
But we can change how we THINK and how we RESPOND to being victimized.

You, like me ( and countless others I assume) are people of strength. We are always the strong ones, the ones whom others come too to whine, complain vent.
So to have a role reversal like this tends to turn us upside down, and it creates a whirlwind of emotions that we’re just not used too.

We need to accept that we have TN, we need to understand and give ourselves permission to feel anger, sadness, fear, frustration. It’s all part of the package.
We need to stop judging ourselves and our behaviour. It’s all perfectly normal.
I’m learning…I don’t like it, but I’m learning to accept that by being victimized by TN I’m going to have a range of emotions that are perfectly acceptable considering the impact TN has on my life.

In meditation practice they will tell you to sit quietly and clear your mind, allow whatever thoughts are roaming around in your mind to clear away…by acknowledging them and letting them move along…
I use this concept with my anger, fear and myriad of other feelings I encounter because of TN…If I’m angry and upset, I allow myself to be angry and upset and then I do something to help move those feelings along, like putting on some upbeat music, or phoning a friend for a chat, reading a book whatever it takes …
I found that before I would just be angry and then get angrier for being angry etc and it was a vicious circle.
I guess what I’m trying to say is go into your neuro appt. honest. You need the mans help to guide you through your TN and let him know that you have felt like no one has taken you seriously before, you really need someone with his experience to support you through. Even though you feel like you’re begging you’re not. Your asking for help period.
I understand the trepidation before seeing a neuro, I’ve had my share of bad experiences before I found my current neuro. My advice is, let him guide the appointment. But be sure you convey and ask everything you need too. Make a short list of bullet points of things you want to ask or cover in your appt. and explain with your meds it’s easier to remember.
Huge ((( hugs ))) sorry for my long rumblings… Mimi xx

You don't have to be a victim! Take control and move forward with getting this corrected. I waited 6 years to have mvd surgery, had it done 2 months ago, and have been pain free since I got out of surgery and since then. Get an mri/mra done first to confirm a vascular compression on the nerve and if this shows on the mri move forward. All of the other things such as drugs etc are just band aids. I highly recommend Dr. Michael Alexander at Cedar Sinai Hospital in LA. He is a wonderful surgeon with a great track record. It is worth any cost to get ahold of your life again..

Thanks Jay, i really do plan to push for MVD if it's possible for me. I see no reason to take 20 freaking pills a day for years, if it can be corrected with a surgery. It will be the first i actually push for a hole in the head! lol ....As for Dr Alexander, i'm sure he's great, but cost IS an issue for me. I live at 200% below my state's poverty rate (and seeing how i live in KY that should tell ya so travel of that kind is simply beyond my means, whatever the pain.

Mimi...*sigh* ...thank you so much for saying all the things you said. It helps to hear it from someone else and not just from inside me. Even though i've been dealing with this pain for 5years, or so...i'm still new to being a "TN sufferer". I"m still learning how to handle the emotional rollercoaster. If it were somone else, i could give the best advice, but having it happen to me, i'm lost.

I see many of the posts you've made around the site and i trust that you are right in what you say. I shall, indeed, take your advice about letting the neurologist lead the visit just being sure to address everything i want to address. Good god, i don't want to alienate the man right off, eh? *laughs* I don't want him to know i'm crazy until, at least, the second visit.

Most of all though, thanks for being honest about your trek through's comforting, in a strange way, to know that the sadness and fear part of the TN isn't just broken part of me.


Mistee, at LEAST the 2nd visit before he catches on to your crazy! Ha ha! Thanks for the laugh…
And you said it right…"if it were someone else, I could give the best advice, but having it happen to me, I’m lost"
That’s exactly how I feel!
I’m good at talking the talk…just need to walk that walk, and take my own darn advice!
Easier said than done.
We’ll get through this…(( hugs )) , Mimi
Ps. Update after your visit please!

My family migrated to Washington State around 1900 from Salyersville, Ky. My grandmother was a baby at the time and their name was Salyers and her mother was a Prater. Do you know where this town is located. I have always wanted to make a trip there and see where some of my roots began.

Thanks really are a comfort. *smile*

Jay, i have no clue where that I live in the big city (louisville) ..i don't know anything about the other cities/towns. But yeah, sounds like it'd be cool to find it and visit...

Jay, a little info for you. In 1860, Magoffin County was formed from parts of surrounding Floyd, Johnson, and Morgan Counties. The name was chosen for the Kentucky State Governor at the time, Beriah Magoffin, who served from 1859 to 1862. On February 22, 1860, the city of Adamsville had an official name change to Salyersville for the legislator, Samuel Salyer, who sponsored the creation of Magoffin County.
During the American Civil War (1861–1865), Salyersville fell on hard times. Because of its location in the Upper South (looking at a state of KY map, its East) and history of settlement by migrants from Virginia, some residents sided with the Confederacy. In 1864, Union forces defeated a Confederate raiding force at the “Battle of Salyersville”.
Founder’s Day is an annual county festival for the people of Magoffin County. It attracts those who have roots in Eastern Kentucky and others who are interested in the genealogy and history of the area. A different family surname is celebrated each year as part of the festival. Also, look up Licking river. I grew up as a child on opposite side of the state Western Paducah. Founders Day might be a good time for you to visit. :slight_smile: D

That's very interesting stuff!! Samuel Salyers was related to our family. I have a family tree that dates back to the early 1700's. The Adams also migrated out to Washington State with the Hamiltons, Salyers, and Praters. to homestead this area. It is called Wenatchee and is where I was born. It is at the east side of the Cascade Mtn range and is on the Columbia River and is one of the largest apple producing areas in the world. My grandmother Leona Salyers was around 3 or 4 when the family came out by train. There is a cemetery that you can only hike into now that has many of the relatives of these early settlers (all of the names mentioned) in including a lot of the kids that died just after the turn of the century from the flu epidemic. A Samuel Salyers was my grandmothers father. I don't know if this is the same Samuel or if this was a son to the Samuel you mention. Thanks for all of this info. It makes me want to look into it a little deeper. I certainly will consider a trip and make it around the Founders Day time you mention.

So...went to neurologist today. Had to keep a tight lid on my emotions; as i kept wanting to cry and beg for help. But, Mimi...i kept thinking what you said about needing someone to support and guide me...and that helped.

All in all, the appt went well. Neuro helped set up a plan for crisis pain for TN breakthroughs, and he helped get me in to see a neurosurgeon to deal with my Psuedo-Tumor Cerebri and my broken shunt.

So while i still FELT like a victim inside, i refused to sit in the victim seat.

Hey Mistee,

Glad the neuro appointment went fairly well, and you are heading for a neurosurgeon. Not sure who you saw in this area? Still think I need someone on that side of the river. Not enough choices over here!

I got Keppra added in yesterday, does have less side affects then Lamictal which might have given me its dreaded rash. The baclofen and others were increased again as well.

I have a couple of names in Louisville which have been suggested, but have made no final decisions yet.

BTW, there is a sort of support group/guidance/sharing that meets in Louisville once a month on Saturdays. I've not made it yet, but have the info if you are interested?

WE can do this *sigh*, no choice!