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!

Consultant gives me a call

As I did have my consultant's secretary's number, I did leave a message yesterday and this morning I got a phone call from my consultant himself! 

I explained what had happened abd said that the battery area was tender yet the implant all still works properly, and he said he wasn't too worried about it and that it would be fine for him to check things over on our follow up appointment on 4th March. I asked if I shouldn't have been stretching at the gym, and he said I should be able to do that and not to worry about doing those things in the future. 

He asked how the implant was working and I said that for everyday it works really well and that I don't feel the pain but when it is really bad pain I haven't found a program to help as this doesn't happen often enough to try lots of programs. 

He suggested that he will contact the rep to reprogram on the date I have the follow up appointment. 

So overall, my worries are relieved and again he is very easy going about what I can do, which is perhaps why I didn't really get any advise at the hospital.