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Stimulation... PENS / SCS for face pain, AD , T.N.

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Old 07-24-2010, 10:46 PM   #111
Burntmarshmallow
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I spoke with Cheryl she is having a difficult time adjusting with the new med change . Lots of the burning pain that many of us know so well. Cheryl Eat something even if you dont feel hungry. Make some eggs or luke warm soup . Try some of that Boost or ensure drink you need to eat good and stay healthy your getting close to final surgery implant . it will be easier once it is fully under the skin and you have the remote.

Lastnerve getting to chat with you was great . I want to remind you these things in no special order . disconnect .tape wires secure to face fill tub up near half way enjoy a semi bath . Keep face head dry . when your done reconnect and turn the stim on using the program you called full load . The one you said was the better of them so far. Leave it like this all night do not turn it off. just recline and relax . tomorrow as you are up doing things start using the different programs . Leave it on all night tonight and all day tomorrow as you try out some of the other programs when your done trying a program just set it back to the one that has been helping today. also use that setting for night time... Write down how you are reacting to all this. writing it down is so important and useful for the rep and doctor and in turn yourself.
I am off to find something that starts with chocolate... and then a bath.
I think the ick is on the way out . I hope.

PEACE
BMW
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Old 07-24-2010, 10:51 PM   #112
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Hi Cindi,
So happy to have you here with our family. All of us can help you in so many ways. We share the same horrible, horrific pain that you have. Today was a very bad day for me. The burning would not stop. I was on my way to bed and though I better check in on our site and saw yours. I felt I should post a message to you . Please know that the one thing that we all do is pray for each other first and foremost. Then you will see that se will try and encourage you into looking into the stim and then guide you through the process. I can't wait to get the permanent one in. The trail was a challenge but showed me that it does work. I will write to you tomorrow when I am not so tired and we can discuss every thing. Just take care of you for now
Cheryl
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Old 07-25-2010, 11:32 AM   #113
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Talking Yay!

Checking in with the first Gotta Have This Stimulator moment.....
I have been giving myself the trial of having the stimulator set at 'on' for the entire day and night without pause. It took a little trial and error to get there, but I finally did. Well, for the last 2 days, I have not been able to tolerate my contact lense on my right eye. So I finally took the contacts out and switched to glasses, and purposefully did not use any of the contraptions to hold the glasses away from my nose bridge. So, of course, I got the intolerable pain right there. So I turned the stimulator to program "nose" that the rep and I developed (the two electrodes closest to my nose only, at my eyebrow and cheek), and said OK, stim, I am going to give you half an hour to fix this. It sure didn't happen instantaneously, but when the timer went off, I all of a sudden noticed that the pain had gone! Whoopee!!! I wore my glasses like a normal person for many hours yesterday. I am getting this thing put in for that alone - if it helps with the rest, great, but this alone makes it Sooooo worth it!
Doing a happy dance this foggy Sunday morning......
Lily
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Old 07-25-2010, 11:47 AM   #114
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Yes Thats a girl !!!!!!!!!!!!!!!!!!!!
I hope that strong bit of "Ahh haaa this works " feeling remains... exactly like my email to you
Thanks for blessing my Sunday with this post. Love you like a sister!
PEACE
BMW...Tina
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Old 07-25-2010, 03:25 PM   #115
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Default Lily, that is Great!

It is so good to read that giving the stim a full try over time is beginning to show some positive benefit for you, Lily!! I found that using it continuously although varying the intesity of the signal allowed my body to "soothe" into the signal overall as a pain management tool, while giving me rest, at night, then more vigorous stim, during the day when I needed it. This kind of 24/7 technique for me is working to help me just bodily acknowledge "it's there" and use it for the intended purpose.

Hoping and praying that the rest of your efforts at Trial go well,
Mark56 PJ
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Old 07-25-2010, 03:31 PM   #116
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Heart For Cheryl

Dear Calewark- It is so hard to read of your endless BURNING pain as you struggle to await your permanent implant without reaching out to HUG you in this electronic world . You have with such strength endured so much both physically and emotionally through the surges of pain, and I so Hope and PRAY that between now and 5 Aug. you will have some rest, some peace, some release or moderation from the excess of pain which overcomes. You are continually in my thoughts and prayers as you struggle, and I know as a group we just want to put you in the center and GENTLY give you a .

May this day be a better day in some way,
ASAP,
Your bro,
Mark56 PJ
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Old 07-26-2010, 12:58 AM   #117
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QUOTE=Mark56;678858]Dear Calewark- It is so hard to read of your endless BURNING pain as you struggle to await your permanent implant without reaching out to HUG you in this electronic world . You have with such strength endured so much both physically and emotionally through the surges of pain, and I so Hope and PRAY that between now and 5 Aug. you will have some rest, some peace, some release or moderation from the excess of pain which overcomes. You are continually in my thoughts and prayers as you struggle, and I know as a group we just want to put you in the center and GENTLY give you a .

May this day be a better day in some way,
ASAP,
Your bro,
Mark56 PJ [/QUOTE]

Cheryl,
I have been trying to think of a way to say the beautiful words that Mark just expressed. It is so tough to know that you are suffering like that, and I pray so much that you will find the relief that you so deserve once the stim is in.
Please know that I reflect every work that he has so wonderfully stated above.
Here's another group hug, and please remember, you are never alone.

Lily

Last edited by Mylastnerve; 07-26-2010 at 01:00 AM. Reason: more smilies
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Old 07-26-2010, 09:15 PM   #118
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Hi Lily,
I so hope that you read this post tonight. I understand from Tina that you are going thru some tough times today. I want to share with you about having the leads taken out. First of all, there is not pain when they take them out. I did not feel anything. I wanted those leads out really bad. They were all tangled in my hair, it would hurt when the generator would move as it was so heavy, all the cords on my chest where not sticking and falling off. I was a mess. I just could not wait to get them out. It was like a huge thing in my mind that it would help to get them out. It was not 30 seconds when I told the Doc....oh my god......I have to have them back in. I realized how much they really did help and started my despair of waiting for the permanent. The pain was bad. It was like the nerves were so happy to have the wires gone and they could start their streaming. The pain did settle down to the normal pain that led me to wanting the stimulator. You have to hang in there. Do not panic. It does work and you had some times that showed you that. I hope you are not going to the er. That will show on your record and could be a problem as the insurance co may think that it was not working. Pray for the pain to go away. I understand that tomorrow is the day that the leads were to come out anyway. I know you have a problem with a ride. Take that time and take a walk, read something...just do something to pass the time before you can get back on the road. Maybe she could drop you off at a shopping center were you could get a cold drink and keep your mind busy which helps you not notice the pain as much. If you have an attack, just go outside someplace away from people and then just calm down. You can do it. Be strong just for a little longer. You will be okay. I so hope you can read this tonight and if you need to talk please call me. I am at 303-722-1307. I live in Denver so closer to your time and I will be up late tonight so please call if you would like some encouragement. I been through it all and still am. I would love to talk you through it. If you do not call please let me know how you are. Hang in there sister.
Love
Cheryl
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Old 07-26-2010, 11:28 PM   #119
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Thanks for the reply Cheryl.
Thanks for the welcomes guys. You are all awesome. Bless you all. I am praying for pain free days for us all.
Cindi
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Old 07-27-2010, 12:40 AM   #120
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Hi Cindi,
How are you doing? We have not heard from you since your first post. What are you doing about your pain? Are you still in a lot of pain as before? Let us know. We pray for you.
Cheryl
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