New Daily Persistent Headache Support Group

My Ociptal Nerve Stim unit is not working as well as it was. Ended up in Er a couple of times and now am searching for a non-narcotic pain med to fill in when the stim unit fails to work, any suggestions? Jim Mag

I don't know. Have you gotten the unit adjusted lately? I know that helped at least one person who had a stimulator when it wasn't working as well anymore (I don't know exactly what that means either, whether they change the frequencies or what, but it helped her).

Otherwise it may be that things like muscle relaxers, triptans, or NSAIDS might help. Anything that can be used as an abortive med. For me Maxalt (triptan) has been somewhat helpful (though I don't have a stimulator so who knows how that would change things) though it seems to be losing consistency lately.

Hi there! I agree with Mary and can add a bit. Definitely consult with your doctors about both figuring out what is going wrong with the stim unit (I haven't heard of the relief fading over time unless something goes wrong...am I incorrect?) and a treatment plan in the meantime. Otc meds (Tylenol, Advil, Aleve, Sudafed, etc) are pretty unlikely to help (and its likely you tried them in the beginning and would know of they help), but of course they are an option. Besides that, you are at your doctor's mercy of what they feel comfortable prescribing...I wouldn't ask for something by name, but for example ask for something to break the pain spike, or something to take on your worst days, or just say you are having increased pain so what do they suggest. A steroid or antibiotic to try to break any increased pain cycle could be helpful. There are prescription NSAIDs (stronger than Advil) and some non-narcotic pain killers such as Tramadol. Best wishes.

Lead migration is a common problem with nerve stimulators, so perhaps that is what has happened. You will need to go back and see your pain management specialist to make sure the wires are still in contact with the occipital nerve or if there is another problem with the unit. Good luck.

I've been looking into nerve stimulation but, I've had Lidocaine nerve blocks and cervical nerve ablations and neither worked. Has anyone had those treatments then had the nerve stimulation and had success with it?

From what I've read about occipital nerve stimulators, there is a possibility of the benefits fading a bit over time, but I wouldn't want to assume that that's what is happening in your case. I think that the advice of checking in with your doctor is really the way to go with this. Probably there's just an adjustment of some sort that needs to be made and then you'll be good as new.

Design1, welcome to the forum! From what I've learned about neurostimulators, at least with some of them, you can't predict the success based on the success you've had with nerve blocks. The stim units we've been looking at for my daughter are different from the occipital stim units, but that's what they've told us. We haven't done the procedure yet, so I can't speak from experience, but it might be worth looking into if you've tried everything else without success. Good luck to you!

Welcome design1! My doctors have told me that for the occipital nerve stimulator, if you failed a occipital nerve block and don't seem to have pain stemming from the region, you are likely a poor candidate (they didn't push me in that direction)...but they weren't the doctors who do the implants. Best thing would be too see someone who implants them and ask if you are a candidate for a trial (non surgical).

There is a new stim procedure I just read about though that combines an occipital and a suborbital stim and seeks to work on more headaches. I am actually looking into it myself (the Reed procedure)...not sure what other options there are besides that. Feel free to start your own intro thread and share as little or as much about your journey as you feel comfortable. Best wishes.

A negative result from nerve blocks doesn't mean that you won't benefit from nerve stimulators. If your pain is mainly in the front of the head, forehead and over the eyes a supraorbital stimulator may be more appropriate. Pain in the back and top of the head may benefit from an occipital nerve stimulator. Of course you can always have both if your pain often changes locations.

I am having a trial of an occipital stimulator next week, and so I will let you know how I go. Fingers crossed it helps as I am so over meds and I would hate to have to shave all my hair off from the tips of my ears down for no reason.

So you have to shave hair off for an occipital nerve stimulator? Hadn't heard of that oddly enough. I'm looking into the occipital + suborbital procedure. Good luck Suki! Best wishes.

Thanks Kate, I am a bit nervous and just pray it helps. I didn't know that you had to shave the underside of your hair off either. I only found out at the information appointment this week. It may not be the case with all surgeons.