yes yes YES i DO know the 'straddling the fence' thing!! All too well!
I was very stressed out and frustrated the first 2 days of my trial, and was in PAIN from the trial procedure itself (HUGE needle in the spine!)
plus i felt very 'rushed' with my trial.
I was confused, stressed, hurting, scared all at the same time.....

By day 3, tho things seemed to start falling into place and i ended up having the trial for 3 extra days than what i was scheduled for (thanks to a mixup with their schedule)
I was able to slow down and relax into it more and the needle pain was gone..

I'm wondering maybe yours is set too 'high' or something? What if you used the slowest, less intense setting (you probably already are), but I'm just trying to put myself there at the scene with you.....
That intense pain you get after you turn the stim off is a total bummer.
It's almost as tho your body is reacting with a rebellious 'flare' after having the stim on......?......do you feel at least a 50-75% pain relief when it is turned on?

Please, Lord I pray this evens out..... take the intenseness away....
Bring PEACE into the mix and let Lily get relief!!


Rae

Hi Lily-

During my trial, I turned the thing on and left it on. Of course, my situation is not trigeminal neuralgia and with the back, maybe I could get away with more use. Following on Rae's heels by way of comment, though, I did find that running the device at a very low setting even for sleep still kept the pain monster at bay, then I could turn up the setting for "during the day" stuff. So, my question is whether in a T.N. style use the rep tells you to use the stim sparingly. My guy said to go for it. Use it. Try everything. I did. I felt impressed. Pain was definitely managed during my Trial, so I was SOLD on wanting the permanent implant by my own use during Trial, and I kept a detailed log of the uses, feelings, pain, pain management, and such in order to reflect at the end of seven days with facts for my review.

Hoping and praying this will even out for you,
Mark56

Legal How is it when you just leave it on?? maybe rather then shutting it off you just turn it lower... do it slowly ! dont go from like 8 to 2 fast just slowly program it to lower setting but leave it on. ... just try jumping on the wild horse and don't jump off ... run , trot, walk, with it. make notes and dont get frustrated . Stay positive !! it is one step at a time. Oh have you heard back from doctor as to how long for this trial? I hope 10 days! The longer the better. Call rep or Doctor if you want it is okay to do that.
I wanted to call you but I am to ick to even want to talk my throat is sore. so email me okay .

Cheryl things are going to be okay. Your are a tough strong smart big sister ! we will figure things out. the meds thing really stinks but I am going to do some "scooby doo " ... ha ( research) and back track I think there some helpful in one of my files .


Rae and Mark thanks for all the help you both are doing around these my thoughts are just focused on the ick but when I remember what it was going to say...
a.s.a.p. .
low pain and PEACE
BMW

Hi to all my dear friends, Tina, Mark, Rae, Lily, and everyone else who reads the thread.
I just can't tell you because the words are not big enough to thank you for all the love and kindness you show to me. So much more love and concern more than my family, friends, etc. I would guess because you all really understand more than they do; but I so appreciate it from the bottom of my heart.

Everything just keeps falling apart as each day comes along with the horrible pain. This makes the pain so very much worse. We all know that stress makes our pain so much worse. But life makes us have to deal with the stress. We really can't stick out heads in the sand and pretend that is does not exist . We have to deal with it one way or another.

The stress of the day is that I am on medicare and at a certain point the medications are paid by them until it reaches a certain amount and then they stop. For some of you that remember all the talk about it...it is call the donut hole. Well, I went to get my rx and I am in the donut hole. That means the meds I am no now for my ad will total $830.00 a month. It was around $60.00 per month. The fentanyl patch is the worst. For a 3 month supply is $639.00. The $830.00 figure is just the other meds and are for 1 month supply.
So, with the pain and all the other things going on in my life ( which is a lot ) this one just took me over the edge. I will not be able to refill the fentanyl which means I am going to have to go through all the redraw stuff. I was told maybe convulants, vomiting, dizzy, shaking, etc. I really do not have a choice. I have enough patches to last me until 2 days prior to surgery. Hope the withdraws do not interfere with the surgery.

Tina calls and all I do is cry. Mark calls and all I do is cry.

Today's conversation with them today was not good for them as they can't do anything about it but hear me cry. Then when I am not talking to them, I am still crying but not trying to talk at the same time. If I did not have the faith in God that He will take care of me.....with all the pain, plus the financial situation ( I only live on Social Security ). I would be loading my gun. There really would not be any reason to continue like this everyday. It would really hurt a lot of people of I did this. Yes, I have family and grandkids; but would good am I to them when I hurt all the time and then depressed with all the other issues. I am not fun to be around..........so????

But, the Lord does not want that for me. He wants me to continue here on earth to do His work. What is my work? Sometimes I do not know and then other times I do know.
\
I know I can be so much help to others that suffer like the rest of us; but right now I would be the worst one to give encouragement to. At least today.

But then I look back before I got the trial stimulator and how much I can help people who have one now ( Lily) and the ones that are getting ready to have one, and the ones that are looking into getting one. I would be a great person to share the happiness of going the stim way. Like if you read the beginning of this thread that Tina and I did. I am certain that after the permanent stim is placed ( 14 more days!!!) I will have a wonderful story for all the great people who read our posts and encourage them to look into it. Of course, and to make all of you more than happy.

Tina....I am so sorry you do not feel good and yet you have to work in that horrible heat, and hard work on top of it. I wish I could be with you to make you chicken soup and put a pillow under your head and a cool wash cloth on your forehead. Keep up the nose/salt treatment. You may need an over the counter med like sudafed. It will dry you up and help your watering eyes, and stuffy feeling. The sore throat will have to take it course but there is otc stuff for that too. You need rest. I so hope that you are okay with Gary gone. I know you worry so much about him; but just pray for God to be with him each minute to keep him safe. Your worry about him will keep you from getting over the "ick"

I am so sorry I burden you with all my sorrow and problems. You are an angel to listen as I go on and on. At least I have you; but really not fair to you ei especially you feel terrible. You are my angel on my shoulder each day. Be really careful. You can still get an infection even after all these years, so if you do not feel better soon, please go to Doc and get some antibiotics. Promise??

Mark, so sorry to burden you also. As I told you, it is so nice to just talk it out to someone who understands. I know you and Tina and others do not have the answers; but I know that if I share with you, you will spend that extra time praying for me each day.
I was so please to hear that your surgery pain is almost gone or is gone. I know how hard it is for you to deal with getting your strength back. It will take time. Pray for patience and like we talked about.....walk that extra blocks each day. You are doing great. The stim is doing it's job which is such a blessing. Be careful coming down from all the meds. That worries me for you.

Lily, keep working with your stimulator. Do not get discouraged. It took me 3 to 4 days to figure out what worked and what did not work. Can you set one level for v1 and a different level for v2? Try that if you can. Whatever you are doing....watching tv calls for one setting, then if you get up to go to bathroom may need to change setting, or doing dishes, another setting, or if the weather changes calls for another setting, etc. You have to play around with it for a while to find the right setting. I know what you are going through and I have 1,2, and 3. Just relax and do not get it into your head that it will not work. My doctor told me a story. He said he did a stim and after being in for 10 days, it did not work. He was due for his appt. the next day. He told his wife that he was going to call and tell the gal that he was having them taken out and to forget the whole idea. So, he gets there the next day. The doc was all ready to say " I am sorry" that is did not work. He said " yea, do no be sorry. Last night I keep working with it and all of a sudden it worked like a champ and no pain. They put the permanent in and he is doing really well. So you just have to keep working with it. Your nerves are not used to it at first and will after a few days. Do not give up. It will work. I promise. I pray for you daily that you will soon find the right setting and not worry so much.

Rae, thank you so much for your sweet and kind words. They means so much to me. You are a special person and so important to this site. I look forward each day to getting a post from you. You take your faith and love for Jesus to help all of us. Your prayers for us mean so much. Your knowledge to help Lily was great. Thank you for being you.

So....for now that is about it. Tomorrow I think I will try to write one of my poems ( or whatever they are called ) I have never done this before; but think it is fun to do.
Hope you all are having a good day and know that I do not forget any of you daily.
You are my family now. I love you all of that.
God Bless you All
Take care of yourself's
ASAP
Cheryl

Cheryl,
You have a wonderful gifted way of letting your heart flow right thru your fingers onto the screen.....it's as tho i am right THERE. So much of what you said in this post sounds soooo much like me (except i lack the gifted penmanship )
I didn't realize you were taking the Fentanyl patches! omg ! i did TOO and i know EXACTLY how you feel! Something is just not right with this setup and it really makes me want to shake my fist at 'somebody'!! For one thing the price of these @#$%^ things is a complete RIPoff!! i get so angry with pharmaceutical BS......
i did everything i could to stretch those patches and make them last.....
i was on the 100's....then, somewhere along the line i began to realize (at least in my case) it seemed to be easier on my body to use the lower strength ones (every 2 days) and it seemed to lessen the spikes as far as half-life effect of the med.....and yes, so many pills in between, trying to keep the 'breakthru'....ohhhh Lord. i felt so 'trapped', as tho my whole life had to revolve around if/when the Dr office would call to get my refill, and to be at the mercy of the nurse on the other end of the phone line as to whether or not I'd have enuf for the month......not to mention the humiliation of feeling as tho i was taking 'too much' and being perceived as such......
All i desperately wanted was to be free of the constantCONSTANTconstant
painnnn! All the days and nights I just curled up under my blankets and cried..... and yes, the times i'd sink into such despair i would ask God to just PLEASE TAKE ME!!!
I know how intense this is for you. i truly know. Every angle of what you describe. Feeling so isolated/useless/alone......

When someone is suffering to the degree you are right now, there should be ample pain relief available! WHY can't the system just LET it Be that way!
No human being should be suffering like this.

Please PLEASE grasp onto the 'knowing' that you won't be living like this.....
you WILL be able to look back on this just days and weeks from now and see that your existence won't have to revolve around this Pharma (puppet-strings) control any longer.....
you WILL be able to smile as you drive PAST a pharmacy and realize that you don't have to 'play their game' any longer.....
You will get your sense of pride and belonging and importance in this world.
You have so much to offer and have such a heart of gold, this nightmare will be behind you. You will be moving forward......not feeling trapped in an endless cycle of darkness and pain.

i am so grateful that you have Mark and BMW to be there for you at the other end of the phone......knowing that you are somehow 'attached' to real human, loving, contact.....the warmth of them just knowing and truly comprehending what you are going thru right now.

Please do everything in your power to make it a real vision to the core of your very being....convince yourself that these days are numbered.....
Freedom is within grasp and you WILL obtain it.
Make it a reality in your mind. I know you can do that.
you typed out a very heartfelt post, so i can SEE that you are determined and that this nightmare will soon become a part of your PAST....

I don't get the opportunity to be there on the phone for you, so i just couldn't log off here for the night without giving you the best my heart can
offer....
You're one less day in the waiting....
I truly am praying with all i know to do
You are gonna get your life back, Cheryl.
i know you will
Rae

Hi All, I'm brand new here and would like to thank Tina for leading me here.
"Thank's Tina!"
Also, Cheryl if there were anything I could do to speed your implant date up I would do it for you in a heartbeat. I know how hard it is waiting when you're in pain. One question for you: Are you saying that during your trial your burning went away?? OMG, I am so on fire and when I read that I thought, "NO way." Then I almost cried. I'm so tired of my mouth and stuff being on fire.
To all of you, thanks for your information and stories. I'm starting to get into desperate teritory wondering what to do with my TN. I'm bilateral, I've had 1 MVD on the rt, 3 on the lt + gamma knife and several other invasive procedures on both sides. Long story short: I hurt, I hurt, I hurt.
I am praying for you all as you go along in you're journies with your stimultors.
xxxx,
Cindi

Lastnerve I emailed you and tried to call too.How are you doing :hug:

AylorCD I am glad you found your way but sorry of the burning monster pain
Do you think PNS could be an option for you ? Has any doctor mentioned trying this before you have motor cortex ??? Kimmers on page 2 has Bi Lat and one for each side of face...

Cheryl you better just enjoy yourself tonight with visiting friend !! then relax I will ring you tomorrow.

Sending healing good energy to my family here
PEACE
BMW...Tina

It's good to have you here!!

Rae

Hi Cindi! I am adding my welcome to Rae's, after all, she does such GOOD artwork and smilies. I am kind of a dweeb when it comes to those touches.

Cheryl is not on tonight, but sharing a little on her behalf, she was having a hard time with her Trial, because the dangling wire harness became such a hassle and even pulled away a bit, eventually resulting in an early termination of the Trial. She had been wondering in the Trial if it was good or not?? Then, as the wires came out, she KNEW she had been benefitted by the Trial and WANTED those wires BACK! She will probably chime in later to clarify exactly how much relief she felt in Trial, but she was definitely sold on asking for the implant. I hope she will come on in the next few days to answer on her own, and I do believe BMW could add some good comments as well.

Praying all releif possible comes your way and soon,
Mark56 PJ

Just sending prayers your way for rest and peace this weekend!

Mark56 PJ