You hit on a symptom I forgot to mention...the light headedness. I have spent hours, many many days, wearing ice in a ziploc bag, tied around my neck, to keep the light headedness and nauseau at a somewhat manageable level (meaning I can still sit and close my eyes and just listen to the TV rather than actually having to crawl in bed). For me, it feels like it's coming from the base of my neck because that's where the ice seems to do the most good. I can go an entire day wearing ice, dumping it out when it melts, and refilling it again. My dr. is horrified I wear ice on my neck that long (you know the usual rule...20 mins. on, 20 mins. off). Forget that, I want REAL relief.

Back to your situation...is it possible to try it at different settings through the day and see if that helps?

I keep meaning to mention this on this forum, as I think it was interesting. Hope you don't mind me sharing it here....it may relate to your situation, I don't know. When I was going through the lumbar trial I got good coverage on my lower back and left leg, but not much on right leg and both feet. But coverage helped enough with low back/hip pain that I said I wanted the permanent. Next thing was the cervical trial....this is where it got interesting. You know how they do it...they put the lead in, turn it on and ask where you feel it and then we go from there. Well, I believe he started with the cervical lead between thoracic and lowest cervical area and when they turned it on to see where I'd feel it in the shoulders/neck/head area, I ONLY felt it in the legs and feet! In fact I felt more coverage from that position for my lumbar area than I did with the previous lumbar trial. I remember the dr. saying to the rep. "this is wierd but may be good....maybe we can get coverage for both lumbar and cervical if we just move it a tiny bit...would be great to only have to do one implant." I thought it was odd but just waited to be asked the next question about placement, as they moved the lead a little further up. At that point, I lost any feeling whatsoever in aforementioned lumbar areas and did finally start to feel something in the cervical area. At that point the dr. said, disappointingly, that no, we would have to use two implants after all. When I was getting off the table I asked him why I had first felt it in my lower regions when it was to be a cervical trial. He said that he's often found that stimulation in or close to the cervical areas can actually also help offset pain in the lumbar areas, so he felt that with my getting two implants I should be pretty well covered with all my pain issues.

Saying all that to say this...no one really knows how our nerves are going to be affected when they put these implants in. Just because YOU have these issues and nobody else ever has doesn't mean that something isn't going on. I'd go with your gut and not let up on trying to find answers. My dr. happened to find out about the aforementioned quirkiness only after doing goodness knows how many patients and hearing back from them. The first patient they usually blow off, but when others come in saying the same thing, they start to listen and a new idea/finding is discovered.

Is your remote programmable so that you could get more coverage on the upper extremities (shoulders/upperback) and less in the upper part of your head? I'm not up on remotes yet, so may be a dumb question, but thought worth asking. For me I think that my problem stems mainly from my upper extremities, and it only gets into the headache/inability to focus/nausea/light headnessness stage when it has gone too far. If it can stay below my neck (via the ice pack for now) my headaches, eyesight etc. is better.

Sorry for rambling so. Must be my pain meds. finally kicking in....wahoooo