Hi all!

I notice when I use my cervical stimulator for a long period of time, I get a 'strange' headache. I mentioned this once to my PM doc who says it cannot be. I disagree with him and am sure the headache is from the stimulator; goes away several hours after stim is turned off, and I notice the headache only after it has been on for awhile.

Anyone else experience a stimulator headache??

Gentle hugs Vanna

Hey my friend!
Sorry to hear about these headaches!

I hope you'll get feedback to your question, because it's a goood one!
I'm still too much of a 'newb' with my SCS to feel qualified to give good feedback (5 months with my lumbar)....
I know you've had yours for awhile now......did these headaches recently start, or have they been going on for awhile?

My first thought leans towards wondering if your cervical unit being on for a long time maybe provokes some sort of slow CSF leak?
Especially since you say the headache dies down after the unit has been turned off for awhile.

Prayin 4 Answers
Rae

Sorry to hear you're having problems. I can imagine how disheartening it must be for you as this lil' gem is supposed to help, not cause problems.

I'm no doctor (nor have I stayed at a Holiday Inn Express so feel like I could be one), but it sounds reasonable to me. I'll be getting a cervical SCS along with the lumbar here in a couple of weeks, and my main complaint for getting the cervical SCS is the creeping headache. It starts out as pain in my shoulders, then as it gets worse it goes up my neck, into my jaw and then when it really wants to get my attention it affects my vision, makes me very nauseous and gives me a lot of tension in my temples. I would think that it could be that your stim. may be too high. I know when I went through the lumbar trial, I had my stim. on too high (thought I had to really feel it to get benefits), and it made my leg muscles very, very sore. I turned it down to where I couldn't even feel it on (but the remote showed it was on), and a few hours later my legs felt much better.

Makes sense to me that if something is causing one's headaches (as in my case), then a stimulating vibration on one's nerves could also cause headaches. Have you noticed if the headaches get a little better when you turn down the remote? Have you ever ran the remote low where you couldn't even feel it but remote shows it's still on?

Hope you find some answers soon!

I suppose I could turn down the stim controls to a lower vibration, but I don't I figure if I'm gonna use....turn it up, baby! To me, when it's too low, it's like a tickling tease instead of a satisfying pain reliever.

My headache is much like you described, Fiona ...... especially at the temples. I also get to feeling light-headed a bit..... like my brain got deprived of oxygen. Nonetheless, I still love the nerve-pain relief in the upper extremities. Don't notice a headache at all from the lumbar stim. Plus! if I do keep it on a night, I get the weirdest intense nightmares/dreams and wake up very lethargic in the mornings. Suppose that stimulator is stimulating odd parts in the brain too

You hit on a symptom I forgot to mention...the light headedness. I have spent hours, many many days, wearing ice in a ziploc bag, tied around my neck, to keep the light headedness and nauseau at a somewhat manageable level (meaning I can still sit and close my eyes and just listen to the TV rather than actually having to crawl in bed). For me, it feels like it's coming from the base of my neck because that's where the ice seems to do the most good. I can go an entire day wearing ice, dumping it out when it melts, and refilling it again. My dr. is horrified I wear ice on my neck that long (you know the usual rule...20 mins. on, 20 mins. off). Forget that, I want REAL relief.

Back to your situation...is it possible to try it at different settings through the day and see if that helps?

I keep meaning to mention this on this forum, as I think it was interesting. Hope you don't mind me sharing it here....it may relate to your situation, I don't know. When I was going through the lumbar trial I got good coverage on my lower back and left leg, but not much on right leg and both feet. But coverage helped enough with low back/hip pain that I said I wanted the permanent. Next thing was the cervical trial....this is where it got interesting. You know how they do it...they put the lead in, turn it on and ask where you feel it and then we go from there. Well, I believe he started with the cervical lead between thoracic and lowest cervical area and when they turned it on to see where I'd feel it in the shoulders/neck/head area, I ONLY felt it in the legs and feet! In fact I felt more coverage from that position for my lumbar area than I did with the previous lumbar trial. I remember the dr. saying to the rep. "this is wierd but may be good....maybe we can get coverage for both lumbar and cervical if we just move it a tiny bit...would be great to only have to do one implant." I thought it was odd but just waited to be asked the next question about placement, as they moved the lead a little further up. At that point, I lost any feeling whatsoever in aforementioned lumbar areas and did finally start to feel something in the cervical area. At that point the dr. said, disappointingly, that no, we would have to use two implants after all. When I was getting off the table I asked him why I had first felt it in my lower regions when it was to be a cervical trial. He said that he's often found that stimulation in or close to the cervical areas can actually also help offset pain in the lumbar areas, so he felt that with my getting two implants I should be pretty well covered with all my pain issues.

Saying all that to say this...no one really knows how our nerves are going to be affected when they put these implants in. Just because YOU have these issues and nobody else ever has doesn't mean that something isn't going on. I'd go with your gut and not let up on trying to find answers. My dr. happened to find out about the aforementioned quirkiness only after doing goodness knows how many patients and hearing back from them. The first patient they usually blow off, but when others come in saying the same thing, they start to listen and a new idea/finding is discovered.

Is your remote programmable so that you could get more coverage on the upper extremities (shoulders/upperback) and less in the upper part of your head? I'm not up on remotes yet, so may be a dumb question, but thought worth asking. For me I think that my problem stems mainly from my upper extremities, and it only gets into the headache/inability to focus/nausea/light headnessness stage when it has gone too far. If it can stay below my neck (via the ice pack for now) my headaches, eyesight etc. is better.

Sorry for rambling so. Must be my pain meds. finally kicking in....wahoooo

As a matter of fact, I DID have my cervical stim re-programmed earlier this year ..... deleting out stimulation from neck and above! My rep told me they have 2 different sets of leads placed for cervical SCS .... one set for upper extremities and one set for neck and above. Even though you are not at that stage yet, you certainly know your stuff already Perhaps the same can be done for you to avoid the neck/jaw/eye discomfort. I was so glad to eliminate that for myself; just the temple headache and light-headed sneak up upon a few hours usage. Perhaps the brain itself gets irritated/aggravated from all those buzzing messages/sensations coming up the spinal cord

Also wanted to mention, I also get SOME coverage to my lumbar area from one of my cervical SCS programs! It is so cool when I am lying in the correct position with that program on and it just hits everything right. I feel like I'm in the zone and I don't want to move for anything or anyone!

Maybe a separate nerve entirely is being affected somehow? Nerves all are so delicately intereconnected.

If you are noticing that there's a pattern to how long after your cervical SCS is on that the problems begin, could you lower the stimulation prior to that point and see if that helps? Maybe lowering it for a while before it sets in and then raising it sometime later would give those nerves (or maybe it's muscle being overly stimulated) a break for a while.

During the cervical trial the first thing I noticed was that over the first few days the headache route started backtracking itself. First I stopped getting nauseous and lightheaded, and then my eyes started focusing better....like it was all shrinking back to my upper back/shoulder area. It was SUCH a relief to get rid of the pain in those areas. I've always said that I'd rather have back pain any day than deal with pain in those areas.

Good luck in tweaking. I'm sure I'm going to have a lot of tweaking to do once I get the twins.

Interesting how the cervical SCS can help the lumbar area.