I am officially a cyborg.
Today I had an occipital nerve stimulator implanted in the back of my head. Friends have been joking that I'd become a cyborg, but when I looked up the definition, I actually AM a cyborg: "a person whose physiological functioning is aided by or dependent upon a mechanical or electronic device."
I'm your really cool friend the cyborg. And so is Grandpa with the pacemaker.
Four days after my nero stimulator implant, the surgical pain has subsided, the incisions are healing well, but the stimulator is not controlling my head pain at all. It's business as usual. I'm bummed, because the trial I had in July controlled the pain immediately and nearly perfectly, but I also know that I only have limited programs. I will get more programs (aka areas of electrical stimulation, intensity, pulsing or constant etc) in the next few days, and I'm hoping we hit on the right combo.
Ten days after the permanent was implanted, and my pain is actually worse. It doesn't respond to any meds, even though I keep taking them like a chump. I'm getting more programming today, but I'm feeling fairly hopeless. I think the leads are agitating the nerves.
Just got reprogrammed and Holy Moses what a difference! I had a different rep after the surgery and he put two lame programs on. Today I got my rep from the trial, who is amazing, and she put the trial programs on. Right now the whole back of my head is buzzing because the current is actually hitting the nerves. So happy I could cry! I already got a pretty significant headache this morning before my appointment so that's taking awhile to calm down, but overall I think this is going to be successful! Thank you, everybody, for all your encouragement.
I was going to wait a solid week before announcing this, but I'm so thrilled I can't wait: my occipital nerve stimulator is working!!!
Last week was a bit of a nightmare, as the programs put on after surgery were not helping, and my headaches were actually worse, probably from irritation to the nerves from surgery. I felt very low and at times hopeless, but my occipital and peripheral nerve stim Facebook group told me of their own struggles to get the right program, and they assured me that once I got the right programs, things would work.
(I can't say enough about how helpful I've found chronic pain and headache FB groups along the way. I've learned so much about different treatments, and gotten almost instant responses to my questions and anxieties).
This Monday I went in and got reprogrammed by my amazing St. Jude's rep Beth (that's the company that makes my stim, and she's the nurse practitioner/goddess I was assigned to with my trial in July). She put three new programs in, and as soon as we turned one on, the whole right side of the back of my head began tingling because the leads were stimulating the entire occipital nerve pathways. Beth was thrilled, and I started to cry.
Since then, I've had two very minor headaches that were easy to get rid of, but I've had hours and hours without pain, which is just amazing. My days feel longer because I'm not incapacitated by headaches or medication. My brain feels open because it's not obsessing about my stupid head.
I have three incisions that are healing nicely. I see my surgeon in early November, when I'll hopefully be cleared for yoga and all other activities (the tissue around the wires needs to scar first so everything stays in place).
This picture is essentially what the system looks like. The actual generator is implanted a bit lower on my back, to the side. It bulges out a bit, and I can feel the wires up the back of my neck and across the side of my head (I have two, unlike the one in this picture). BUT those are very minor things in comparison to the amazing pain relief I'm getting.
When I first heard of this procedure three years ago, it sounded like madness. It IS a treatment of last resort, but after five years of daily searing nerve pain, it started to sound pretty sane. Today, I just think it's amazing.
I got my perm implanted two weeks ago. Since reprogramming this past Monday, my occipital neuralgia pain has been nearly nonexistent. I've been so happy and relieved. But this afternoon, the pain is back in all its intensity. It's been raining hard all day and I'm sure that's partly why. Also I had breakfast in a cramped, toddler-filled cafe, and that didn't help. I knew the stim wasn't a cure, but I'm still a little heartbroken.
How often do you get your pre-stim pain?
I got my permanent occipital nerve stimulator implanted two weeks ago. Since reprogramming this past Monday, my occipital neuralgia/cervicogenic headache pain has been nearly nonexistent. I've been so happy and relieved.
But this afternoon, the pain is back all its intensity. It's been raining hard all day and I'm sure that's partly why. Also I had breakfast in a cramped, toddler-filled cafe, and that didn't help. I knew the stim wasn't a cure, but I'm still a little heartbroken.
It's been five years since I walked into a steel beam with my head, and these headaches started a few weeks after. MRI revealed that C2-6 are a mess, probably from late-stage Lyme that parked in my neck for months about 16 years ago.
The stim is the most successful thing I've done (tried injections, Botox, nerve ablations, several chiros, like eight physical therapists, inpatient licocaine infusions, and every meds under the sun). And YES, I've tried acupuncture!! I think we should get five dollars every time we are asked that.
For a few days this week, I thought maybe severe pain was behind me. I announced the stimulator's success on my fb wall, and so many wonderful friends congratulated the end of my pain. Except it's not the end. The stim is just pain management, along with hydrocodone and Tizanidine. There isn't going to be an end to the pain.
Anyway, we have so many new people in this group-- I wanted to say hello and welcome! Let us know your story and what treatments have and have not worked for you.
About five weeks ago, I got an occipital nerve stimulator implant. My pain is down easily 90% and I am so grateful. For two years, I took on average four 10 mg Vicodin a day. I've been weaning down with surprisingly no withdrawal symptoms, and for the last four days, I've taken a half each morning and afternoon.
If I stop completely tomorrow, would it be safe to assume I won't go into withdrawal? Or is this small amount what is keeping me from it?
I had nine days without pain, and now it's back in full force. This seems to be the pattern (twice now): get reprogrammed, have over a week without pain, feel overjoyed, and then the pain comes back.
I've been keeping the best program on high 24/7. I have two others. Should I rotate them? Is my body adjusting to each program too quickly? Do I need to get more power? My surgery was only a month ago, so I'm new at this.
For the last few days, the area where my wires are in my upper neck is super itchy and swollen/painful. I'm not sure whether this is a normal part of healing. My incisions healed really easily and quickly--could this be a scar tissue thing or is it reason for concern?
Two months post-surgery. I'm saying my pain is down 70 percent. I still get some every day, but it goes away quickly with medication. That wasn't the case before--I'd have many days where I couldn't get it under control no matter what I did. I wanted to completely go off pain meds, but that doesn't seem like it will happen.
A question for those of you who take pain meds: for two years before I got my stim, I took 4 10 mg hydrocodone every day. It mostly kept the pain manageable, but many days the pain just ran wild.
I've had my stim for over two months now. I'm in my second two-week phase without pain, and I've been weaning down off the pain meds ( I'm definitely physically dependency, and tried stopping them cold and was crazy irritable). I'm still getting them prescribed because if and when the stim doesn't work, they are the only med that stands a chance of getting to the pain.
So what have you done about pain meds? So you still take them? Did you withdraw from them?
I know this no-pain phase is a real gift, and I'm not counting on it being permanent. But I'd love to not be physically dependent on meds at all. I'm only taking two halves right now, so by early next week I should be off them
I've had my stim almost three months. After several reprogrammings, I just enjoyed about twenty days with virtually no pain. But it's come back for the last few days. Is this a common pattern? what do you do when this happens--change programs? Increase intensity? It's so frustrating because I was getting used to the freedom of no pain and was almost withdrawn from pain meds.
I was hoping that the stim would allow me to stop taking hydrocodone, but that hasn't been the case. Most days I take a tiny amount to keep from going into withdrawal, but then I have days where the stim doesn't control the pain and I take as much as a did pre-stim (10 mg 4x a day).
I don't think pain meds are good for my mood. I've been successfully treated for depression with Prozac for many years, but I think it's been back for the last few years. Weirdly, the less pain I'm in the more I notice the depression, because I think the pain was a huge distraction from it.
Does anyone else notice pain meds affecting your mood?
I'd really love to stop taking them altogether. But I don't get loopy side effects from hydrocodone and it allows me to work etc. when the pain is bad. The only other med that works for me is Tizanidine, but it knocks me out and there's no way I can work when I take it.
I have a appointment with a psych next month to talk about changing up my antidepressants, but I hate the thought of taking even more meds.
Anyway, thanks for listening. The holidays are always the worst time for me, so everything is heightened right now, both pain and depression.
As many know, the nerve stimulator I had implanted in the back of my head in September has given me my life back (backstory: hit my head, damaged neck, pinched nerves to head, occipital neuralgia, like constant brain freeze for the last five years, tried every treatment I could find, was becoming hopeless). I'm not sure how much longer I would have been able to teach--which is everything to me--or even be in the world.
I feel so fortunate to live in Philadelphia and to have found my neurosurgeon, Dr. Ashwini Sharan at Jefferson. People fly in from all over the world to see him. I also credit an amazing FB group of people with this nerve disorder who are exploring and have gotten the surgery--they talked me through my fears and encouraged me so much.
This morning, a woman in our group posted the following. It broke my heart.
"Dear friends! I'm very sad today. You know that I suffer from sever pain for many years and know about my problems for my treatments. Finally, I found doctors in US that said I have a chance for become better and received the letter for traveling to US for treatment. But, unfortunately, because of american president law, I cant travel to US. Because I'm iranian. I dont know what should I say. We talk here, in these kind of group, like a family. We become happy,sad, worry for each other without thinking that we are not from same country, same religion, same skin colour,... I'm really sad."
I just had two glorious months with very little pain (had my stim put in in September). Now it's been back every day for the last week. I've tried different programs at different levels of intensity (I have 13 programs all together, a few added each time I got reprogrammed).
Those of you who've had the stim for awhile--is this your experience? Six weeks or two months, and then the nerves get used to a program and the pain comes back? Bad pain after a while with no pain really sucks.
Has anyone gotten more programs if you already have as many as I have? I love my rep, but I don't want to be annoying. Of course, I don't want to be in pain either.
Has anyone had to have revision surgery? My stim has been less effective for the last six weeks or so, and my doc ordered an x-ray to see if the leads have moved. If they have, he'll go in again and he plans to replace them with paddles. I got the x-ray on Friday and should hear this week. I'm hoping they didn't move, but I also wish the pain relief was more reliable, as it was the first four months I had the stim.
I am SO frustrated. I got my stim six months ago and had several amazing months where the pain was nearly non-existent. I've had to get new programming periodically, but it always worked. But for the last month, my pain has been back to pre-stim level, which is nearly constant. My doctor ordered an x-ray to see if the leads have migrated, which I got two weeks ago. Since then, I have heard nothing from my doctor, have called the office to make sure the report from radiology was sent (it has) and am told when I call again every day over and over that the nurse practitioner will call me. She left one message days ago and I haven't been able get her. My actual doctor isn't seeing patients until June.
If I indeed need revision surgery, I'd like to get things moving. The pain is getting in the way of everything, particularly because since I got the stim, I was able to get involved in a ton more at work and outside, a blessing that has now become a curse.
I have occipital neuralgia that is finally well controlled by a nerve stimulator. But this morning I did the dumbest thing. I'm a writer, and I decided to do some writing by hand. After about 45 minutes, my traps on the right side were seizing, and I've had a hideous headache since, for 8 hours. I've taken all meds--hydrocodone and zanaflex, and have been massaging and switching up stim programs, but I still feel like I have a screwdriver sticking out of the back of my head. I'm so pissed! I have people coming for a meeting at 8, and I just took yet another zanaflex hoping it will knock me out and the pain will chill after that.
I literally have not done that much handwriting since I hit my head and started all this. I write and grade papers on the computer. Before my injury, I used to get neck massages after heavy grading sessions, but this is ridiculous. Well, now I know. Writing longhand is out.
Oh, as an aside, zanaflex makes me feel a little bit insane. I have weird thoughts and sometimes feel like I'm living someone else's life. Good times
updated her status.
Zanaflex is a med of last resort for my occipital neuralgia (nerve pain condition from a head injury six years back--ranges from a sensation of a screwdriver in the back of my head to really intense prolonged brain freeze). Not only does zanaflex usually knock me out (which is a blessing, actually, when the pain is this bad), but it has the strangest side effect of any medication or substance I've ever taken. It makes me feel like a different person. I get memories that aren't quite mine, feelings of regret about things that didn't actually happen. I don't feel safe or particularly sane. It's an altered consciousness, but not like me being high or hallucinating, just a different consciousness, not my actual consciousness. Its like a bad dream, but I'm awake. It's subtle and really unpleasant. Then days, weeks, months later, when I'm feeling normal, I'll get flashes of memory of a particularly bad time with zanaflex, memories of memories and thoughts that aren't even mine. I don't like it at all.
For the last six months, since I got a nerve stimulator implanted in the back of my head, the pain has been mostly under control, for which I am outrageously grateful. But today I had the balls to sit down and do some writing by hand for a change, good old pen and notebook, and 45 minutes of that must have pulled the trap muscle and irritated the nerves, because it's really bad.
I'm eight months out from having my stim implanted, and overall it's been amazing. I still get a few bad days a month, but considering every day used to be a nightmare, this is amazing.
I had one incident where my incision at the back of my head posed and bled a little several months back. My doc put me on antibiotics, and all was well.
However, at least once a week I have a tiny bit of crusty dried pus (I mean tiny). I have my husband look closely each time, but he says everything is healed. Does anyone else get this? I guess I should ask my doc but I don't feel like it for some reason. It doesn't seem like anything.
Does anyone with ON get Botox in addition to their stim? I got it for a year before my stim and it didn't seem to help, but now that my pain is under better control, I wonder if it would work. I'm 80% better than I was, but sometimes that 20% is still unmanageable and doesn't respond to meds
My head was awful last Sunday and it's awful today. During the week it was fine. Normally-effective Vicodin is useless and the only thing that helps is zanaflex, and it knocks me out. I've had no extra stress either day--it's Sunday!--and my stim is on the setting that works the best. I feel like there should be a reason for this pain but I can't figure it out. It super sucks.
Now that my head pain (occipital neuralgia) is episodic instead of near-constant thanks to the nerve stimulator I had implanted last year, I'm noticing some patterns. Barometric pressure is a biggie for lots of people with pain. I never knew why until I read this, and I think it's absolutely fascinating!
I have occipital neuralgia, a nerve disorder. My implanted neuro stim and the meds I take are preventative, and once the pain is on, it's really hard to get rid of and really sucky. So a component of my life for the last several years is protecting myself from it.
I'm triggered by lights and sounds. Also, if I sit in the backseat, I get carsick and that sets my head on fire. Exuberant, loud voices also set my head on fire. I keep earplugs in my purse and white noise on in my office. I avoid a lot of situations. I only do adult swim.
I'm really bad at telling people this, so I tend to cancel plans if I'm on shaky ground and know there's going to be exuberance. I can't be a passenger in a car with a bunch of people because insisting I ride in the front makes me feel like an ugly princess. I always offer to drive.
I know I've puzzled and insulted my friends, maybe even you, when I cancel or turn down social invites, and I'm especially graceless when my head sucks and I need to ask someone to lower their voice. I'm sorry. Whistling, forget it. I tear out of the room without explanation.
I took an uber at nine this morning and my head's been searing ever since. Are you allowed to ask to sit up front in an uber?
I hate being this prissy killjoy.
Facebook just reminded me that it's my one-year anniversary with my occipital nerve stimulator implant. I walked into a steel beam six years ago. I've since experienced five years of daily nerve pain in the back of my head from bone spurs pinching nerves in my upper spine that transmit to the occipital nerves (the bones spurs were already there thanks to a bad case of Lyme in 2001, just waiting for the head injury to set it all off).
Those five years were bizarre. My life got really small, and every day the pain would send me into the darkest parts of consciousness. I was enraged, depressed, hateful, and sometimes suicidal. Researching doctors and treatments and seeing every kind of practitioner became a part time job. I stopped keeping track when I exceeded twenty thousand dollars in out of pocket expenses. Making sure I could teach mattered more than anything, because it gives me my most fundamental sense of purpose in the world. I knew if I had to stop because of pain, I would lose my life. Everything beyond that felt optional--social life, exercise, my marriage. (Interesting, I completed two novels and several short stories in those years, so I guess writing is also fundamental for me).
Fortunately, my husband didn't see our marriage as optional and was the best partner anyone with chronic pain could imagine. I'm in several pain groups on fb and see that so many partners can't handle the complaining and isolation, (BAD) bad moods and constant doctor's appointments, but Tony supported me like a champ. I had many procedures those years where I had anesthesia, so he spent countless hours in surgery waiting rooms so he could drive me home, sometimes taking off work to do so. I owe him big-time.
The first time I heard about a nerve stimulator, I recoiled. You'd really have to be at the end of your rope to let a doctor put a battery with a bunch of wires inside your body. No thanks! But after a few more years of endless meds with bizarre side effects, more injections, nerve ablations, and a gruesome inpatient lidocaine experience, I was ready. I was really fortunately that my neurosurgeon at Jefferson, the brilliant, charismatic, and hilarious young Dr. Ashwini Sharan, is super aggressive about getting insurance companies to cover the implant that MANY Americans are denied.
A year in, my pain is about 70% improved. The first few months were the best, but I've needed many reprogrammings since, adjustment to the programs of vibration through the two wires that cross the nerves. And the stim alone hasn't controlled the pain. I'm also on a daily regimen of hydrocodone. Most days, the stim and pain meds keep pain under control, but some days it gets out of the gate, and I take zanaflex, a muscle relaxer, and go to sleep. I've tried more than twenty meds/combos over the years, but hydrocodone and zanaflex are the only two that have worked at all.
The current narrative in the US is that pain meds are inappropriate for chronic pain and contribute to the opiate crisis. The truth is, they've saved my life and allowed me to function, and I am among millions for whom this is true. It's estimated that only 6-9% of people who take pain meds will abuse them, and the vast majority of people who overdose are taking meds that they got illegally and were prescribed to someone else, meaning most of us who are prescribed take them responsibly. I deeply resent that we are under the spotlight and risk being denied life-saving treatment because of public outcry. I'm fortunate to have doctors who know me well and know the necessity of opiates in my pain management program. Many aren't so fortunate, and across the country, doctors are radically reducing/eliminating pain meds for chronic pain patients, resulting in people resorting to street drugs to manage their pain, and sometimes to suicide.
I've met two other people with nerve stimulators in real life--one a great guy at my dog park who has two in his lower back (former football player and cop. Looks just like Paul Newman). So far, they aren't helping him. I met another at my doctor's office. She has debilitating migraines and her wires run across her forehead and are quite visible and very successful. And if you watch Ray Donovan, there's a character with Parkinson's whose stim completely controls his tremors. Neuro stims are also used for children with cerebral palsy, sometimes with amazing results.
I was surprised how quickly I adapted to everything. I actually love the constant vibration in the back of my head. It's a very pleasant change from searing nerve pain. My battery looks like a lump of back fat on my left side, and I charge it once a week, wearing a belt with the charger for about four hours. If I forget to charge and the battery shuts off, the pain is very strong in about forty minutes. I had the option of getting the battery in my chest, where most get their pacemaker battery, but I'm glad I didn't. Too visible!
I'm not completely where I'd like to be with pain, but I'm so much better and I'm very grateful. When I have a bad day, it's still REALLY bad. I have a long Tuesday/Thursday teaching schedule right now, and this week I taught my last class in so much pain I was nearly hallucinating. I think of pain as being in back (tolerable) or in front (overwhelms everything). Tuesday it was front and center. I can only take so much pain medication or I get extremely irritable and nauseous (imagine drinking a gallon of strong coffee), and the muscle relaxers knock me out and I can't take them at work, so I just pushed through. Teaching in extreme pain is as close to torture as I ever want to experience. Thinking, reasoning, reacting, being patient, kind, covering everything in my lesson--it's like riding a bike up a very steep hill. You grit your teeth and wait for it to be over. When class finally ended and I left the building, I ran into a beloved colleague who wanted to talk about something, but I couldn't. I literally couldn't. Everything was shut down and I had to get to my office with the lights low and the door shut, and then home. That used to me most days. Fortunately, those days are infrequent anymore.
To anyone going through a medical odyssey--keep pushing. It gets really crazy in the medical wilderness because each specialist sees things through a particular lens. Keep researching and reading, ask for referrals, join support groups, be open to alternative treatments (I tried acupuncture, biofeedback, myofascial release, Alexander technique, every sort of physical therapy, type of chiropractic, oils, herbs, lotions, meditation, yoga, cognitive behavioral therapy, and many sorts of traction gadgets. Most didn't help at all, but I knew I needed no stone left un-turned). I'm lucky to live in Philadelphia because we are a very major medical city. I've been to all the superstar doctors who treat this condition. I'm very lucky, but I also worked hard to find what I needed.
This last year has been really interesting. I've felt myself come back to life and become more engaged at work and in my community. I say yes to more things I decline, which wasn't true a year ago. I feel positive about the future, and mostly I feel like a normal person again.
Who ever thought I'd celebrate the one year anniversary of electricity inside my body, but here I am!
I've had my stim for a year. The first six months or so were stunning. I'd go weeks with zero pain, need an adjustment, and then go more weeks with no pain. But for the last three months, I'm almost back to pre-stim pain. I've gotten programs adjusted a few more times but I have daily pain and it sucks. I take hydrocodone and it barely helps anymore, and I take zanaflex when I'm a wreck. It totally works but knocks me out.
The worst part is that while the pain was better, I filled my life back up with the stuff I loved before I had my injury--extra projects at work, community organizing, more social life. Now I dread those things because I'm in pain and I just want to be home alone.
I'm not sure what to do next. Before the stim, I spent five years trying everything--every doctor, med, injection, ablation, alternative modality, chiro, physical therapist. Nothing but hydrocodone and zanaflex made any difference. I just dread going back out there.
I'm considering: Botox again, kratom, maybe another physical therapist, even inpatient pain rehab when I'm on a teaching break.
Has this happened to others--the stim got less effective? What do you do?
So my surgeon says I don’t have an infection but prescribed antibiotics anyway. Something’s not right, though. Super tender and inflamed for about seven inches along the wires, swollen glands in the side of my neck, and my year-old incision leaking pus today. I’m glad he prescribed antibiotics because frankly it all seems like an infection.
I wrote last week that things were weird with my stim, which was implanted over a year ago--lots of painful swelling and pus. My surgeon wasn't at all concerned and didn't think I had an infection. He thought I might have pulled a muscle in my neck. He put me on an antibiotic. A week later, the pain is gone, but it all still feels super tight and I wake up every morning with the hair around the incision just super encrusted with a lot of pus. I wrote the nurse practitioner this morning. She says the only other option would be to do revision surgery but that would risk bigger infection. Arg! She said to go back in and see my surgeon again. Anyone ever have this happen? I don't want another surgery, but I don't think this oozing is good at all.
My worst fear confirmed—this damned draining/infection bs isn’t getting better so they are taking my miraculous stim out, probably tomorrow. I feel like I’m in an episode of Black Mirror. This last year has been amazing—I got so much of my life back at school, in my community. I’m terrified to return back to the level of pain that led me to the stim in the first place.
They’ll wait six months to let everything heal before I can get another.
In the hospital waiting to have my infected neurostimulator removed. Was nervous because my actual superstar neurosurgeon is out of town, but his associate is just as impressive. Both young and would pass for college students in a bar.
If you ever want to really piss me off, perform surgery on my head and back with multiple incisions, yank out wires and a large battery, flood the wounds to clean out infection, SCRUB them, douse them with antibiotics, and stitch them closed. When I wake up to extreme pain at the incision sites, as though someone cut me open with a jagged piece of glass, give me minuscule doses of morphine, which I told you before surgery has always been ineffective for me post-surgery, and when I tell you only dilaudid and Demerol work for me for acute pain, balk and refuse to use it BECAUSE OF THE OPIATE CRISIS!
I've been in the hospital since Monday afternoon to have my infected neurostimulator removed. In my mind, they'd just yank it out, stitch me up, and send me on my way. Haha. Now we're waiting for Infectious Disease to determine what kind of infection I have and then assign the appropriate antibiotics. Best case scenario: I can take oral antibiotics and will be out on Friday. Worse case: I need IV antibiotics and will need a picc line for 4-6 weeks and won't be out until next week. BOO! If you believe in good vibes, send 'em my way please. I really hate being in the hospital for even a minute, and want to go home ASAP. Plus, would rather not get a picc line etc.
Luckily I have my laptop, tons of school work to do for the upcoming semester, a new novel I'm working on that's humming along, Netflix, you guys on FB, Kerry Neville's beautiful short story collection Remember to Forget Me, a great husband who visits and makes me laugh, and brings me not-hospital food. I also have my own room now since my MRSA culture hasn't come back yet (had it nine years ago and I always test negative now but they want to be sure). And my own pajamas.
Unluckily, the nurse who put my IV in on Monday was inexperienced and could only manage to get it in on top of my hand, which hurts like hell and makes typing difficult (going to see about getting it moved). Also I have a 5 am wake-up for IVs and blood draws.
Infectious Disease says I have a staph infection, quite possibly MRSA, which I had nine years ago. It will take 48 more hours for the cultures to grow to where they can pinpoint exactly. I’m getting that picc line tomorrow. They’ve got the surgical pain under control, I’m comfortable and have plenty to keep busy. The doctors and nurses I’ve seen today are fantastic.
I lost my stim and it sucks and I’m terrified of the pre-stim pain coming back.
For a year I’ve had an occipital nerve stimulator implanted for my headaches and it’s been really helpful. (I walked into a steel beam six years ago and have occipital neuralgia). But right before Christmas it got infected and Tuesday it had to come out. I was in the hospital the rest of the week while they analyzed the infection culture (it’s-staph infection called MSSA) and now I’m home with a picc line an an antibiotic pump for the next several weeks.
A pretty massive bummer as I’m worried about the pain being uncontrollable once school starts Tuesday (I’m a professor), but I’m taking it a day at a time.
Along with the stim I took 10 mg hydrocodone 4x a day and that kept the pain manageable. I’d take 4 mg tizanidine if it got out of control. Pre-stim this regimen wasn’t working anymore.
I have to wait six months for a new stim. Any pain management ideas in the meantime? Gabapentin and lyrica didn’t help in the past
It’s been two weeks since my stim was removed due to staph infection. I had to stay in the hospital all week til they diagnosed the exact infection (MSSA) and was then fitted me with a picc line and an IV pump with nafcillin. Turns out nafcillen greatly decreases the strength of hydrocodone, which is the only thing that ramps down my ON. So between 24 hour pain and the sheer annoyance of the picc/pump, the last few weeks have just sucked. And I’m a professor and back in the classroom, which is my happy place, but getting to school and getting around is so much harder then I expected. Im super frustrated and cranky. I’m also having a lot of trouble sleeping.
I’m hoping to get the picc line out later this week. I’m taking Trokendi for pain (not helping much) and hoping the hydrocodone will work again once the nafcillen is out of my system.
In the meanwhile, I have to wait 3-6 months for a new stim. I’m having second thoughts because while the first six months were amazing, it was getting less and less effective. Plus the idea of another possible infection completely freaks me out.
In the meantime, what besides the stim helps your ON? Also, can I ask you not to say things like “I don’t know what I’d do without my stim” because I find it painful to read. I felt the same way, but now I DO have to live without it.
Since I got my infected implant out 2.5 weeks ago, my occipital neuralgia is horrible. There are exactly two drugs Of them many I’ve tried over the years that help the pain at all: tizanidine and Vicodin.
One bizarre thing is the IV antibiotic I was taking makes vicodin completely ineffective (drug interaction website told me) so the 40 mg Vicodin I take each day is completely useless.
I finished the antibiotics last night and got the stupid picc line out this morning and my husband thinks the antibiotic needs more time to get out of my system, but I’m not sure. I got the implant because the pain was unbearable and it makes sense it would come back.
I never wanted stronger pain meds than Vicodin but I think I probably need them. Right now teaching is torture and then I come home, take a tizanidine, and go to bed. I can’t do this much longer. I am useless and miserable and I don’t know how I’m going to get through the next 3-6 months before I can get a new stim.
I’ve tried everything for nerve pain in the last few years: cymbalta (like lyrics), gabapentin. A bunch of weird headache cocktails. Injections, rhizotomies, PT, chirp, alternative everything. Currently taking Trokendi (new version of topimax) but it isn’t doing much.
I wish I could just smoke weed but I’m one of those pathetic people who get paranoid and miserable.
Any ideas?
I need some advice. I have occipital neuralgia from a head injury six years ago. For the last year, I've had a nerve stimulator that, along with vicodin all nd tizanidine, has kept the pain manageable. Before I got the stim, pain was out of control. I'd tried 20+ meds, RFA, injections, many PTs and chiros and alternative treatments. The stim was a miracle. I'm a full time professor and with the stim I filled my life back up with extra activities at school and in my community.
Over the holidays, my body got colonized by staph and the stim had to be removed three weeks ago. I have to wait six months to get another. In the meantime, the pain is awful. It's like a sick joke. Teaching for the last two weeks has been hell. If I double the vicodin, I can get the pain tamped down for two hours before it comes roaring back. Two hours isn't enough, and extra vicodin makes me super irritable and speedy
I'm now trying trokendi (new form of topimax) bit it isn't helping. I'm seeing my old neuro on Wednsday and a holistic person next week. But in the meantime, I'm thinking I should ask my primary care for stronger pain meds.
I HATE doing that. I have never wanted to "graduate" from vicodin, and I know doctors' goal right now is to prescribe as little narcotic as possible. Asking makes me so uncomfortable. I don't think he'll refuse, though. He knows me really well and cares about me.
So what is the next step? Percocet? Months ago I asked him about kratom and he'd only heard bad thing. I'd like to explore it further, but I need something immediately so I can keep teaching. Before the stim I was almost at the point of taking medical leave because the pain was so debilitating. I don't want to do that. I love my work.
I'd appreciate any ideas about better pain meds or anything else. Thank you.
It’s been 24 days since my infected stim was removed. This really sucks. It had made such a difference in my life for the 15 months I had it. Now the pain is pretty much constant, no matter what meds I take. It’s worse than before. I’m wondering if the surgery to remove it—plus the debridement and flushing to clean out the infection—didn’t irritate the occipital nerves.
I am a full time professor and am active outside of teaching at school, and write fiction, and run a community organization. Right now I am just trying to keep my head together. Pain distorts everything.
I'm so frustrated and need advice! I had a stim for 15 months until January when it got infected and removed. Naturally, the ON pain has been hideous ever since.
If I'm honest, the stim was amazing for the first 6 months, and then less effective. At first I would have weeks with no pain, but by the second half of the year, I had daily pain, but I could get rid of it with pain meds.
Now the pain gets completely out of control every day at some point. I've graduated to stronger pain meds and they only put a dent in it (and I hate "graduating"--it makes me feel like I've failed somehow). Since the removal, I've tried Trokendi (useless), more Botox (useless), and am starting with my 9th physical therapist (who actually specializes on ON, which is kind of bizarre).
I'm slightly hesitant about getting a new one because of the lessening effectiveness, but I think I need to. The pain right now is no way to live. I'm a full time college professor and very active in my community. Right now half my waking hours are spent in intense pain where I can't do much of my life.
Any thoughts, particularly from those of you who also had infections and got new stims put it?
I haven't written about my head pain lately (kept a blog for a few years but stopped after I had surgery two years ago). So here's some writing about pain.
It's been five months since I had my occipital nerve stimulator removed due to infection. In two weeks, I meet with my neurosurgeon to talk about getting another. I have super mixed feelings.
First, I've been trying some new things since the removal to see if I can get the pain down and avoid needing a new stim. So far, nothing has helped. I've tried some new meds (useless with weird side effects), mind/body work (a lot of writing and mindfulness practice--interesting, but not helping), very targeted physical therapy by the first occpital neuralgia PT specialist I've ever had (which is causing pretty dramatic pain flares, unfortunately), migraine-protocol Botox (31 strategically-placed shots--not helping)
I hesitate with a new stimulator because the old one had gotten less effective over the 15 months I had it (though it still helped a LOT. I still had pain every day but the stim plus low-level pain meds would get rid of it fairly quickly). For the first two months after I got it, I had ZERO pain, which was absolutely amazing. By the end, before the infection, I was saying it was 70% effective.
I also have zero desire to have surgery this summer.
Then there's always a chance of another infection. I'm not so worried about this, but T is.
Six and a half years with this pain, and I've accepted that it's not going away. It's a combination of the nerves pinched by bone spurs in my neck, and tight muscles and fascia that get worse with stress and just bear down on the nerves. So anything that gives relief is just palliative. It's not going to be cured.
I've tried SO many things in the last 6 and a half years: over twenty meds and med combos, a cabinet full of natural remedies, eight chiropractors, nine physical therapists, biofeedback, acupuncture, a TENS unit, a year's worth of Botox treatments, dry needling, cortisone shots, two rhizotomies (nerves burned), inpatient lidocane infusion, cognitive behavioral therapy, and the occipital nerve stimulator.
The pain feels like brain freeze (very sharp and specific) and ranges from a 2 to an 8 in intensity. I have times throughout the day with zero pain, but only if I take meds. I also have days where it goes completely off the rails and I can barely function, no matter how much medication I take. These days were rare when I had the stim, and are not rare in the last five months.
Overall, I think I've learned to live with pain fairly well. I'm not depressed because of it. I'm annoyed that it interferes with my life a lot of the time, and I have to cancel plans. I've never once called out of work because of pain, not because I didn't want to, but because I didn't want to start doing it. When you know the pain is permanent, you just can't, or next thing you know, you'll be out of work on disability (which I absolutely cannot do--I'd lose my mind and my sense of purpose in this world. Three years ago when I made the decision to consider pain meds, a tough and fraught decision, that was a huge motivator. I'm VERY lucky that pain meds don't incapacitate me at all. At worst, they make me cranky and impatient).
Now that I'm writing this and thinking about it, the stim did help. I could actually make plans and be reasonably sure I could keep them. Right now I rarely make plans for lunch, dinner etc. because it's 50/50 that I will be in too much pain. Talking and listening and being engaged is really hard with this pain. Overall, noise is a big trigger. Everything gets so amplified when the pain is coming on--loud kids, loud friends, loud barking dogs, any sharp noise.
Rowdy classes where there is constant side talk is a massive pain trigger and also the worst situation to be in when in this pain. I have a great summer class right now but unfortunately they are always always talking when I am teaching and I leave school in a huge amount of pain and meds often don't help at all. That wasn't the case when I had the stim, only rarely.
There's a chance that neurstim technology has improved in the nearly two years since I had my surgery. I'm really lucky to have my surgeon (Dr. Sharon at Jefferson) because he is a the top of his game and will know what's hot. I'm also incredibly lucky that my insurance covers this because many people can't get it covered.
I can't get the battery etc. put back in the same spots as before, so I would have all new incisions, scars, yuck.
Today is a particularly bad pain day because I had PT this morning. I had a great few hours hanging out with a very beloved colleague but the pain came on hard while I was driving home.
I probably need to get a new one, huh?
Met with my neurosurgeon to discuss replacement stim for the one I had removed due to infection this past January. I'd had it for 15 months. The first 3 months were amazing and I rarely had pain, but then I went back to daily pain and lots of reprogramming. Basically I think it improved the pain by about 70%--I still had pain every day, still took pain meds every day, but I took less and the pain never went off the rails and shut down my day.
Today my doctor said he think I should get paddles instead of the regular wires I had before. He said paddles only send the current in one direction and also don't slip as often. BUT the recovery is harder and the incisions are larger.
Recovery is always a factor for me. I'm a full-time professor and can't do substitutes for my classes for longer than a few days. My plan is to have the surgery right when my summer classes end in late August. The following week is a bunch of meetings that I can mostly skip, and then the fall semester begins the week after. The only way I can have a super long recovery is if I wait until winter break in December, and I'm not too psyched about another half a year at this intense no-stim pain level.
So who among us has paddles? Has anyone gone from regular wires to paddles and can tell me the difference and whether it's worth it?
