Thursday, May 7, 2009

I'm Wired!!! (Only temporarily)

The Trial has started!

Yesterday had my "wiring" installed. Got home in the wee hours of the morning today. Still working with the 7 programs that were installed. Some work much better than others, and some eat up more battery than others. The picture is of the control unit where programming is done for different uses of the stimulator lead. The white wire is connected to a smaller lead wire which is installed under the skin at the back of my head (where the occipital nerve is located)

I have not taken any indomethacin for the last 36 hours. I have a noticeable headache, but it's not at the point I feel I have to medicate. Some of the programs actually seem to knock The Headache back several notches. I am having some post surgical pain, but it really is just an annoyance at this time. Yesterday I took some medication for the pain, but today I haven't.

The settings that seem to help me the most are the ones that seem to stimulate the nerve branches that go towards my ear and the top of my head. Ones that go down my neck don't seem to do anything at all except make my neck tingle. There is one that doesn't seem to do anything even tingle. I can tell differences in the angle I hold my head as to the degree of tingle or snapping/tingle I am getting besides the intensity level I have set on the stimulator.

If you have used a tens unit or muscle stimulator the feeling is very similar, but less "surface" sensation.

The stimulator representatives said the study has shown so far that you should try to use it as much as possible - preferrably 24 hours a day. Since The Headache is there 24 hours a day I have no problem with this. I used it all night and had no problem sleeping.

I am including a picture of the dressing on the back of my neck. This is kinda yucky looking and the tape is sticking to my hair that hasn't been shaved off.

I was supposed to get a "get out of being patted down at the airport" free card saying I had an implant, but I think they forgot to give it to me. I have instructions on how to use the stimulator and I have a card from the stimulator rep, but I ended up having to be patted and swiped down at the airport just to make sure I wasn't a crazy terrorist. At least they checked! I am not looking forward to the return trip but will just allow extra time for pat down.

I didn't make it to work today because I got home way too late. I didn't go to sleep until around 4 AM. I feel frisky enough to go tomorrow though!!

The connection from the stimulator to the leads is kinda flimsy and has already disconnected 2 times - once on the plane going back to my seat on boarding (got caught on someone's stuff and disconnected) and once at home where my puppy jumped up to see me and got tangled. It wasn't hard to put back.

I am going through batteries (9 volts) but the reps warned me of this. They also asked if there was any precipitating event to make The Headache start, and I said yes, it was a week after I had an ERCP under general anesthesia. They didn't seem surprised. Hmmm, wonder if that is a factor that should be studied.


  1. Yay!!! I'm so glad that it's working!

    I had to look up what an ERCP was - it sounds nasty. Did it at least help along with bringing on Teh Headache?

    As for the batteries, that's unfortunate. Those 9Volts cost a King's ransom. How about rechargeables?

    Is there any way they can send you the airport permission note through the mail? It might save the delightful pat down procedure at the airport next time. I'm so happy for you! I hope it keeps the headache beast at bay.

  2. The ERCP also coincided with a "pancreatic billiary sphincterotomy" that DID help (apparently something called manometry they did during the ERCP indicated I had papillary stenosis which just means scarred sphincters). So I guess it had a purpose! I just wonder how many people with very bad headache issues had them occur after a medical event such as mine!

    I would ask for a mailed get out of pat down card, but there are only 3 postal days left until pat down time comes again. Since I live on a "rural route" I don't think it would get here on time. At least I know I am giving the Homeland Security agents some on the job pat down training! There is a silver lining in every cloud!

  3. I hope it ends up working well for you. It sounds like you have a great attitude, which can only help.

    I'd also like to invite you to participate in the Headache & Migraine Blog Carnival -


  4. This trial sounds so fascinating! I really hope and pray it works out for you. Thanks for sharing your experience.

  5. I would have loved to participate in the blog carnival, but confess I wasn't monitoring my comments as I should. Maybe next time???

    I hope this trial works for me, and gets FDA approval for this device for all chronic headache patients that other conventional avenues have failed to help.