Help...how to find right setting on remote?
 

Hi all. Well, here I sit with two remotes. At first I thought I had found the right settings for my lumbar and cervical stimulators, but yesterday proved me wrong. So I started wondering how others decide when they've found their right setting. Do you increase the intensity until you REALLY feel the stimulation? Do you increase the intensity until you barely feel it? Or do you increase the intensity until you feel it and then back off a bit until you don't feel it?

Do you think I'm expecting too much as far as pain relief with it only being a week since surgery? I'm wondering if having the intensities on the remotes set too high may actually cause me to hurt more. How, oh how, does one find that right setting:confused:

Tell me bout it!!!!!
 

I know EXACTLY how you feel Fiona:confused: Im a bit 'lost' at the moment. Earlier today I thought I had a good setting. Got up and hey........gone!!! nothing while I walk unless I bent over nearly in two. I have all the settings at their highest until I get to bed. Once there I notice once I lie down that the setting are WAY too high and would have to adjust them. In the first week, I didnt turn it up full because I was 'afraid' Id do damage. but now I do...although as I type I have breakthrough pain which is not being relieved, Im guessing thats because the setting, although at high, isnt high enough and definitely needs to be adjusted. Ive written down my programmes but now when I go back and think, ah this is the one, it isnt. !!! so my words of wisdom yesterday may not have been such a good idea:rolleyes:

Im sure that over the next few weeks you will become used to the settings, especially when the wounds have totally healed. Or at least thats what I'm hoping for. Otherwise Im stumped:confused:

I talked with my rep. today about another matter (had problems charging my implants), and brought up the whole thing about finding the right setting. He said to not worry about it right now as they have to wait till a person's pretty well past the point of healing from the surgery (internally as well as the obvious external incisions)before they can go after really tweaking it. He said some are lucky and get a good program from the beginning but it's usually a matter of trial and error for the first several months. He said that's what the pain meds. are for now.

He said that the setting they would give me today that could be great, is probably not going to be the setting I'll need once some more healing has happened. So, for the first month or so sounds like it's a step by step process while things are healing from the surgery. He said my dr. won't let him change my programs very much in the beginning as he's more interested in the leads scarring in nicely and THEN they focus on fine tuning the programs.

Makes sense but seems a long way off . Can I have some of your patience because mine was pretty thin today as I wrestled with trying to charge my implants for the first time.:mad:

:hug: for Fiona..

Patience for Patients with Charging and Settings
 

There is no hard science of which I am aware regarding the notion of charging or settings especially given Fiona, Jackie, and I have Boston Sci, yes?

Charging- I learned charging is a matter of developing taste, time, opportunity, and comfort. I, for instance, find charging better accomplished for me as I lie down. This way I tend not to dislodge the charging unit [Oh, how I love that little "homing beep" sound that lets me know I am zeroing in on the battery] as it does its charging work.

The gummy sticky pasty adhesive things which may be used to afix the charger directly to the skin did not fare well with me for a regular use. They are a limited supply. They adhere and have to be peeled away, then cleaned from the charger unit. They just did not fit my regular need. I find if I wear a tight pair of cutoff short pants type garment over my underwear, then slide the charger "home" as it beeps to connection, I get a fairly snug set, while also avoiding burning skin, a risk for the direct to skin application and any length of charging. This way, easily charged, for fairly brief periods of time, on a fairly consistent basis, and no muss no fuss.

The Settings issue is probably best thought of from the perspective of one who uses some form of heating and cooling for their home or business. Settings will vary throughout the day as the heat or cool load will impact the equipment. Contemplate your body as the equipment being served by the stim device. Be willing to keep your remote or remotes handy to very settings or program as your body dictates. NO ONE SETTING OR PROGRAM WILL EVER ALWAYS SUFFICE. There, I said it. If your body warms you change clothing do you not? If the temperature cools, perhaps you add clothing. Adopt a similar perspective to your device CONTROLLING and use your remote often to adopt your best body need response and you will develop a symbiosis with the device.

Take time. Be a patient PATIENT. Use your remote in small steps as you migrate to settings which tend to feel good to you. As for me, I may want more intensity because I am feeling a nerve pain flare, or I may just as willingly "dial it down" to just barely feeling it because such a setting or program best suits the needs then to my need and like. Avoid frustration through demand for instant gratification. It will not work that way. You have to stroke its mane, nuzzle it a little, whisper its name, let it get to know you and you it. Take charge by being in charge with discretion and you will get to know you remote and your device much more completely.

:hug:z
Mark56:)

What i have had the best luck with on my units over the years is to change only 1 thing at a time, ie intensity, amperage ect. However I use A LOT of juice as evidened by being on my 3rd unit. I also keep a log of settings as i have several programs. Also i need diffferent settings depending on my activity. I have been able at times to shut my unit off for 1-2 days at times and still get the sensation that it is still on. HOWEVER, if i leave it off too long i can pay somewhere far south of here playing catch up as when the pain hits it tends to go from zero to out of control.
hope this helps
:hug:z

Thanks for the good advice. As usual, you folks come through:D

My fun today was trying to figure out which implant goes with which remote. Nobody thought it a good idea to write that information down, so when came time to charge my lumbar implant nobody knew which butt cheek needed the charger. My rep. tried to talk me through a way of figuring it out (have one implant charging and whatever remote will NOT work is the one I'm charging). Sounds easy, right. Well, both remotes decided not to work when I was charging. So the only answer was for me to pick an implant to charge and once it was charged to look and see if my lumbar remote was fully charged once more. Had a 50/50 chance of picking the correct implant to charge in the hopes IT was the one connected to my lumbar remote.

Alas, the one I picked was the wrong one, so took me about 3 hours today doing what should normally (hopefully) be a much shorter process. And the beeping, beeping, beeping...was enough to drive me mad :eek: That velcro belt just would not keep the charger in place unless I stood on one leg, stuck my tongue out to the West (why is it always to the West, I wonder) and sang a medley of show tunes. I think now that I like Mark's suggestion of just laying down on top of the darn thing and doing it that way.

Yayy!
 

Yep, your peeps have certainly come thru for you!
You've been getting very good advice here on this thread!

The only thing I can think of to add at the moment (I am deleriously TIRED, put in another 12 hour day at the office) :eek:
But anyway, I agree with your Dr......just hold back a bit and let your body do it's thing first. I think maybe your Rep overwhelmed you with too many program options right up front. There'll be plenty of time for that.
For now I'd just try to keep it as simple as possible and use only a couple of programs that work, even if the coverage isn't giving you all the relief it's capable of. Your bod has been thru ALOT! And you've got pain meds and breakthru meds for this....

To this day, I basically only use one program, because of the simplicity. I found the one that gives the best coverage and fine tune the intensity accordingly. When I go to bed, i turn it way down because the spine pressing on the leads is gonna cause it to give a stronger signal.
Sometimes. I just need to 'give it a rest' and turn the whole contraption OFF for awhile because the constant buzzing gets to me and I get this feeling of wanting to crawl out of my skin......kinda like an anxiety thing.
I still get a slight phantom stimulation even when it's off.

This will all come to you in time. Keep it as simple as possible for now.
Save yourself the stress. :o

Well actually
 

I do not lay on top of it, as burning could be a risk to skin. I let the stim be on top, kinda laying to the side as I wedge the stim between tight shorts and undies. I guess it is a stim wedgie.

Since you are doubly charged, were you to adopt my method, you would first charge one side and then the other.

Hope this helps with that FRUSTRATION, and remember it will get easier as you set your own rhythm.

:hug:z
Mark56:)

Go to sleep
 

Rest for you, kinda like Pooh, you work too hard as your move approaches. Don't overdo. Pain awaits. Please remain in your skin, you are too valuable to all of us to be inside out.
Mark56:D

Awww thanks
 

Yep, I've met my limit....this is my last post for the nite!
My eyes have gone BEYOND being blurred and heavy......it's like both eyes have deleriously combined into ONE eye . . .
Good Nite my precious world
:thud::Zzzz:

Comments about settings and charging
 

Hi :hug:Fiona, sorry I am so late to reply. I just wanted to add somethings from my experience since I have had mine for awhile. I agree with you that getting to the right settings is very frustrating until you are actually healed. Even after that healing is over it will keep changing on you as you get more active. I needed higher stimulation the more active I am so it makes sense that we need to be programmed often ;) And yes , I am also Boston Sci as well, even though I had medtronic for my trial lol. Also, the way to find your right settings is really just trial and error I always just experiment turning it up and down to see the best relief I get, some days I get more relief at one setting then the next day it could change. I also have found that in different situations I have to turn it down like when we go to the movie theatre or if I am sitting in a chair while people are rolling heavy carts by me (happens at school), and I also have to turn it down when I was on my wii fit board because the machine kept saying I was moving around too much even though I was perfectly still! My rep gave me 3 different settings and I like to have the options ;) also I have to turn it very low to lay down and go to sleep because sometimes it feels jarring. I also make sure that when my settings are set they do not come on too high as that can be jarring to me as well. Of course I am talking about my experience when the stim was working right ;) The other thing is charging. I also have the belt and have to use it now but I also used to love the sticky things instead. The tips I have learned for charging are be careful what you sit on to charge, my couch does not work because of the fabric. Also the best way for me is to lie on my side with my stim facing up. Since my stim is in the right side of my lower back I just lay on the left side and this way it won't overheat because it has to get air to it! Then I just pop a couple movies in and charge. If you do have trouble charging you should talk to your rep because mine was helpful in showing me better ways to do it! Also, spend as much time as needed when you get to be reprogrammed I have actually spend hours at the doctor office to get programmed right and it took about 3 hours but its better then just settling for a program so you can get go home (I used to do that in the beginning and I thought I was wasting their time!). I hope that helps too, I know Mark56 and Rrae already explained that stuff to you but I wanted to offer my suggestions as well. I know the recovery process is frustrating at times but I hope you get things all figured out and feel better very soon, take care! :hug:Tara

Thanks, Tara. That was very helpful information. I go in for my 10 day checkup tomorrow so will take in a list of questions I have. I do think that I am not being patient enough with myself...it's actually only been over a week since surgery and I'm already thinking/acting as if I should be doing better and be further along than I actually am.

Thanks for the reminder that I need time to HEAL...I have been too used to pushing myself when in pain, and I'm forgetting that I need to relax for now and give my body a break. I'm going to go mark 6 weeks on the calendar as a reminder that I need to give myself a break for these next 6 weeks or I'll get back into that old pattern of getting impatient with myself and trying to just push on through the pain rather than resting/recuperating.

Tara was right on
 

Hi Fiona!!!!

Hope you are feeling a bit better even now! Tara was so right on about pro-active addressing the programming of your devices. Prepping for the conference in advance with written questions [take the list with you, we nearly forgot mine] that you review with them will be helpful in the extreme, that way questions are not forgotten in the rush of "Oh, this feels so GOOD."

We are so thrilled for you, so thrilled,
Prayers for healing,
Mark56 PJ:)