New Daily Persistent Headache Support Group

Thanks all of you, for your encouragement, and practical ideas (such as bathing). Today, day 2 post surgery, my surgical pain is still pretty bad, but it is marginally better than it was yesterday. My night was awful, I can't lie comfortably on my head, with the incisions in different places on my head. The lidocaine spray is a good idea, thanks for that, I will try to get some. Today I have been experimenting with the stim levels, turning it up and down, I can feel the stimulation on top of my headache, I don't think the stim itself is painful, but my forehead, which is where the lead is, is quite painful. I am hoping that with time, as things heal, I will feel more clearly how its working. At least I can tolerate the stimulation, I was worried about that. There's hope yet!

Hi everyone,

An update on my stim trial: I am now on day 8, of the 10 day trial, and I am getting some relief with it. My average pain range is between 4 and 6, whereas before, it was 6-8. My doctor is not as excited as I am though, he wants to see lower numbers in order to go ahead with the permanent implant, which I'm scheduled to do this thursday. So we wait and see until then. Meanwhile, the rep reprogrammed the stim to cover a better area of my pain, I had a gap in the coverage, where I felt the pain. Hopefully that will make a difference in the results for the next two days.

I am hopeful that this will work for me, it has already shown the difference it can make. I only hope that my doc will agree.

I am glad you are seeing a difference and I hope it gets more dramatic now so that the doctor will agree that it is significant (everything is significant to us!).

It sounds like it has been somewhat successful. Interesting that your doctors aren't convinced yet though. Are you able to keep the trial going for longer if there is still some uncertainty? It would be a shame to not be able to go ahead with the surgery if there is a chance that it will bring about even more improvement down the track. Likewise, it's major surgery so you don't want to rush into it. Everything is sounding positive though.

Keep us informed.

Good luck! So do you really think the doctor wouldn't approve the permanent if you "only" drop from a 6-8 to a 4-6? I think I've heard of insurance often requiring 50%, but depending on how linear your scale is that could be close to there. I do a lot better with percent relief than trying to give it a 1-10 rating. My pain can triple at times, yet I wouldn't say my baseline is a 3 and my max is a 9...my baseline I'd call more like a 6-7. A 10 day trial is great. I have heard of folks repeating the trial if necessary, using data from the first one as far as lead placement and programs, especially if it was thought something such as the lead placement could be improved. It would be quite rare to continue past 7-10 days though due to the chance of infection. Pretty awesome too that they would do the permanent so quickly. Best wishes.

Thanks guys,

my trial won't continue any longer than 10 days, because of the risk of infection, and my doctor wants to do the permanent, if possible, right away, because the lead placement is good, and again, the risk of infection. I'm fine with not having to wait. Since the rep reprogrammed the stim on monday, I have better stim coverage, and I see a difference in my pain.

I agree with you, Kate, it shouldn't be determined by the number 50%, if I'm seeing a difference, which I am, I would think that would factor into the decision as well. I hope it will ultimately.

I had a good night, and didn't wake up in much pain, I'm quite hopeful.

Glad the reprogramming made a difference. I hope it all goes well from here.

It looks like I'm on for tomorrow, with the permanent implant! I saw my doctor again today, I had some bleeding from one of the incisions, thank god its not infected, but he's going to open it again tomorrow and clean it again, bother. Then we spoke about my pain relief, he was pleased with the difference from monday till today. He wasn't ecstatic, he will ask me again tomorrow before the surgery, about the pain relief, but it seems like I'm going to make it.

That is fantastic!!!!!! I'm so excited for you!!!!!!!!!

thank you, I'm hopeful, yet nervous. My head is hurting more now, but I think it's nerves. By tomorrow, I'm going to be ok, I have to be.