Irritated.....

Recently I have generally been irritated by my stimulator, no matter what program I use!

I tend to feel it a lot more than I used to, even on low settings, and it is really quite annoying. Because of the low frequencies I use, it feels like a heart beat or pulse in the back of head! It is pretty disconcerting. I used to get this if I rested my head against something that pressed on the lead but now it happens when my head is not resting on anything at all!

I have also noticed that the left end of the lead seems to stick out more than it used to. I'm not sure if this is due to weight loss! Can you lose weight on the back of your neck??

I am still having the battery flipping issue too. 

I am awaiting a phone consultation from the consultant on 14th October. I guess this will be to discuss the issues with the battery and where to go next. I am Hong though that Mike from St Jude's had filled him in on the potential end of the line of settings to try with my stim, as I feel that this is also a big issue that I need to know what options are available ....or not!!

A couple of weeks back I had a coupe of days where I had weakness in my right hand. I have no idea if it is related to my ON but it seems pretty coincidental. I basically went to write something down and I couldn't physically hold the pen with any control. I was unable to write properly and my hand would spasm at points, making my handwriting look all over the place. I continually tried to corvette this issue through practise, but I had little fine motor control for almost 12 hours!! My hand and arm felt heavy and odd and I couldn't generally control it. It was so strange, but it hasn't happened since. 

I have been experiencing higher pain levels for a longer period of time than usual and throughout this have had extreme dizziness to combat too.

The programs I have set on my stim at the moment don't appear to be helping in any way. I either can't cope with the pulse or it is pinchy or too strong, or it is just my everyday program that doesn't break through the worse pain levels. I have usually been riding it out and it drops in intensity within a few days, by this time it hasn't and has lasted well over a week at this pain level!

Reprogramming

Last week, the day after my follow up appointment, I had my third programming session with Mike from

St Jude's Medical that provide the implant. 

I desperately needed some programmes to try and help my worse pain days, as nothing was breaking the pain I had last week! On the appointment day it was the third day of severe constant pain. This was the longest I had suffered since the op.

We set another 4 programmes that are all extremely low frequencies, all at 2Hz. I obviously seem to know the ones that are too much for me, as I mentioned the programmes set from before that I hated and made me have goose bumps immediately and these were set at 150Hz, so we are never going that high again!!

There is one setting (program 13) that seems different, as it spreads out the higher it gets. It's strange though as you can feel the tapping through my skin, close to my ear. It's more or less at pulse band width, so it pretty slow. Apparently I seem to like these most!

Although I spent as long as possible, day after day, with this setting up pretty high. I still couldn't break the pain. It eventually subsided 5/6 days later! 

I'm not sure it was the implant though, I think it had just been long enough.

I am continuing to leave the stim on day and night on my low setting (program 8) as I barely feel this one.

We shall just see what happens, as always, I guess!