Cheryl,
It hurt my heart to hear you talk - I am so sorry that you are alone in your fight with this thing - I hope that you know that you have all of us here to support you as you work through this all - because of that, you will never be alone, ok? Please rest assured that we are all here for you.
I am trying to keep people realistic about this stim, in my world. Loved ones can have the "all or nothing" "fixed or not fixed" attitude about this device. Thankfully not my husband, though. He gets it really well.
I am having some mixed results, and feel like I am winging it with this trial. On Monday I got it programmed. On Tuesday, I had my Chronic Pain support group. I had pain, so I turned the thing on for a 1/2 hour, then turned it off for a while, and then the pain would come back, so I would turn it back on again. I cycled this way with it until the evening, and when I was done, I got that awful pain that makes you seriously consider the ER. Kinda a kick-back pain right after I turned it off, and deep into my eye. So last night, when the pain came, I turned it on and left it on for almost 3 hours. 15 minutes after I turned it off, I got the kick-back pain again, and again really involving the eye. (I am a V1/V2 TNer. So the leads are over the eyebrow and under the eye.)
Today I am turning it on without there being any pain, and leaving it on for a long time, to see how that goes. So as of right now it is indeed a mixed bag. The stim DOES interrupt the pain, when it is on. But I feel like I am trying to read a wild horse, and don't know quite how to go about taming it.
Does this make sense, anybody? I feel like I am straddling the fence on whether it works or not.
Thanks for any and all feedback, and I want you all to know that you are in my heart and prayers as well, and I pray that we all find that which we need out of all of this. Lord knows we deserve it after fighting this pain for so long.
Much love ,
Lily