Shhhhhh - Don't Tell!
The official trial of the implant was supposed to be over last night, and I guess I was supposed to disconnect everything. But I have to confess I have been sneaking me some voltage today. I haven't been doing heavy duty voltage like all day like yesterday, but it was Mother's Day, and my sister had a lovely shindig at her house for our Mom, and I wanted to go and not have to worry about The Headache.
The Headache is still ever present. I turn down the voltage, turn off the machine and The Headache pops right back up. If the machine is off too much, The Headache goes back to its old tricks and starts hopping up the pain scale. I am going to be very sad Wednesday when they remove this dealybob of an occipital stimulator. I actually read the manual and was able to turn the average gain up on certain settings and ones that didn't work day 1 started to work when I had the amperage hiked.
The best part - my medication usage has been waaaaaay down, and my pain levels (still spiking throughout the day) seem to be under my control for once. Biofeedback didn't give me that, accupuncture didn't give me that, medication didn't give me that, chiropractic treatment didn't give me that, massage therapy didn't give me that, nor did nerve blocks or trigger point injections. Two hospitalizations and uncounted emergency room visits didn't give me that. Thank heaven for electricity!! Thank heaven for the stimulator trial!! Thank heaven for St. Jude Medical!!! Thank heaven for Cleveland Clinic!!! And most of all Thank Heaven for Dr. Mekhail and the Pain Management Department, because without he and his crew deciding I was a candidate for this trial I wouldn't have been able to afford this device.
I've done all this thanking ahead of time and may still be premature. I am hoping that I will be a candidate for surgery. That is still up to the study sponsors. I hope my insurance company cooperates some with the surgical expense, but they have basically told me that this is considered investigational and they will not pay.
I also hope that I am just not wanting help so badly that I am imagining the results. When you have been in pain long enough sometimes you grasp at straws, and although I have been in pain a lot shorter period than some folks its been plenty long enough. I have tried to be extremely careful with myself - letting The Headache take over and then trying to knock it back with the stimulator and then turning the stimulator off to see if the pain comes back - to eliminate wishful thinking. I also did some activities I knew would wake The Headache and then tried the stimulator during the activity to see if it would make any difference, then turned it off to see if The Headache was still there. I'll have the say this, The Headache is extremely persistant! As objectively as I can be, I think the stimulator is doing the job.
One of the strangest side effects is I have been dreaming a lot. I suspect I have not been hitting REM sleep as often as I should because The Headache likes to wake me up at night or not let me sleep until exhausted. Perhaps the amount of medication I was taking was changing my sleep cycles also. I guess its like the title of the Philip K. Dick novel - Do Androids Dream of Electric Sheep? : Do Electronic Stimulator Users Dream of Electric Zaps??
There is a blog of another headache sufferer that tried the trial and convinced herself that it did work when it didn't. The surgery was a great disappointment to her, and reading of her experience I definitely have tried to be objective. For me there has to be a good reason for going under general anesthesia. If The Headache quit tomorrow I would be grateful, but realistically I don't think it is going to do that.
The stimulator doesn't kill all the pain. The stimulator doesn't cure The Headache. If The Headache decided to go full force, I think I would still end up in the emergency room even with the stimulator. What I want would be less medication, fewer exacerbations, and a reduction of my overall pain levels. If I can accomplish those three goals I would be very grateful.
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