Good News

Last week I had an appointment with a new pain doctor to discuss my stimulator. It went really well and I feel hopeful that pain relief is on the horizon.

The pain doctor said that my lead placement did not make sense. I brought color coded pain charts to show him where my pain was, where my leads were, and where I felt stimulation so he was able to see the holes where I needed coverage.  He said that the lead configuration was not going to be able to provide me with adequate coverage and pain relief. Moreover, my doctor never should have implanted a different lead configuration for my permanent implant without doing a trial with it first. So, after my first trial left me wanting more coverage he really should have done another trial with his proposed lead configuration.

In his opinion, I shouldn't even try to get coverage to the left AT nerve. He thinks I should have two, 8-contact leads in a "v" pattern on the back of my head covering both lesser and greater occipital nerves on the left and right. He thinks that because occipital nerve pain refers pain around to the temples and behind the eyes, that covering the occipital nerves well could in time stop that referral pattern. He also said that even if the AT nerve pain persisted that he thinks I would be happier with great coverage on the back of my head instead of this crappy, spotty coverage I have now. He referred me to a neurosurgeon that is supposed to have a lot of experience with this surgery and I see him on the 21st.

I also showed him the prescriptions I was on for my pain. My current doctor has a 3-pronged medication approach to occipital neuralgia - opiates, anti-convulsants (for nerve pain), and muscle relaxers. I mentioned in a previous post that I was still in constant, severe pain almost all the time despite these meds and that my current doctor insisted nothing else could be done to help me. Well the new doctor said that was untrue. He said that changing me from short-acting pain meds to long-acting pain meds would be a good first step because I am in constant pain. Also, there are a variety of anti-convulsants and muscle relaxers we have yet to try that could be more effective. Overall, I left feeling that this doctor really listened to me and had a good handle on how to proceed from here with my care. After I get the new surgery scheduled, I will leave my current pain doctor and transfer my care to the new doctor.

In the meantime, I had to go back to my current doctor to get medication refills. I asked for long-acting pain meds and he prescribed them to me. I couldn't believe that he spent the entire last year insisting he couldn't give me anything different, and then after a mere suggestion I had a new script! Turns out, they are more helpful. I'm not taking any more medication than I was before, but I'm down to 2 pills a day instead of 5 and the extended release quality of the new medication keeps me from having highs and lows with my pain during the day. My current doctor also had a bunch of suggestions on how to fix my lead configuration, all of which require a neurosurgeon. He still thinks he can get coverage to that left AT nerve. I refuse to let him operate on me again because I don't trust him, but I am curious to see if the neurosurgeon I'm going to visit thinks I should try for left AT nerve coverage or not.

I'm so ready to get this stimulator fixed. My life has been put on indefinite hold since the surgery, and I'm ready to move on. I try to stay busy and not worry constantly about my stimulator and my pain, but it's hard to divert the mind from a persistent, brain-rattling torment. Speaking of, I need to sign off from this now. My neck and head are warning me that if I don't quit soon they will make me pay. Wishing everyone a day of less pain and more fun.

Update and My Pain Management Crisis

I have an appointment with a new pain doctor on November 28 to discuss my ONS implant. I plan to ask him what he would do differently with my leads given my pain patterns and discuss pain medications. A big issue I've had since my surgery is that my headaches have gotten worse due to the bum lead placement and my doctor will not change my pain medicine type or dosage. I take only 1/2 the maximum allowed dosage per day and take one of the weaker opiate pain killers. I would even be open to changing my anti-convulsant if he thought that would help, but he seems to think the medication combination he has given me is the best option out there.

If I stay perfectly still on the couch all day, the pain meds I'm allotted per day handle my headache pain. If I try to crochet, drive to the doctor, go out to eat, try to eat any meat or hard and crunchy foods, or even run to pick up a prescription, my pain is much too intense to be managed by my meds. I told the PA at my pain doc that since the surgery when I put on sunglasses or brush my hair on the left side, my entire left AT and left lesser occipital nerves feel like they're on fire for hours and that I needed something different to control the pain. All she said was, "Huh. I don't know what that is. Guess you should ask the doctor. Make an appointment in 4 weeks." I drove home in tears.

I know I should have pressed her harder, but I've been begging them for months to change my pain meds because they just were not controlling my pain to a manageable level and they have ducked and dodged that request over and over. It's frustrating because I feel like I've proven that I want to help my pain without pills by having so many nerve blocks, ablations, epidural steroid shots, alternative treatments, and finally the ONS implant. Additionally, I have 2 other friends who see my same doc that are able to live fairly active lives and get much stronger pain meds than I have for lesser conditions.

This is a frequent complaint I hear from other chronic pain patients. It's strange to me because oftentimes you hear about our country's over-prescribing problem and how oxycontin is given out like candy by some doctors, but most people I know with chronic pain can't even get non-opiate pain relievers from their doctors. This is a subject I know is contentious. I have addiction in my genes and have watched family members struggle with it, so I did not undertake the decision to go on opiates lightly. I also know that there are irresponsible doctors out there who do hand out oxycontin for a muscle ache. Despite these issues, I don't think that means pain doctors can ignore their patients. If my doctor thinks he really has done all he can do for me, he should tell me that and refer me out.

Well, I'll get off my soapbox now. I have a big week coming up with car travel back home to see my parents for Thanksgiving. Riding in cars is one of the worst things for my pain, so it will be a difficult couple of days. However, I get to see my 11 month-old niece and she's worth the pain it takes to get there. :) I hope everyone has a great Thanksgiving and can focus on gratitude despite the pain you're feeling.

What Happened

I've been putting off writing about this since I started the blog because I really hoped that the surgery would end up a success even though the process was terrible. But now that I'm 14 weeks post-op, the verdict is in. My leads will have to be redone.

To begin this story, I'll start with the trial stimulator removal. My doctor didn't show up for this but had his nurse practitioner take the leads out. I told her for the permanent implant I would need coverage at the left auriculotemporal (AT) nerve. The trial leads did not cover the nerve at all. My pain is most intense there, so without coverage to that nerve ONS seemed like a waste of time. I asked if I should set up a specific pre-op appointment with my doctor to discuss this need. She told me no - she would make a note in my file and there was no need for a pre-op.

So fast forward to my permanent implantation date. After I'd been consciously sedated and placed faced down on the O.R. table, my surgeon asked where I wanted my leads and where my pain was located. I was immediately struck by fear because I was sedated and unable to move my arms to show him what I needed. I tried my best to explain, but it was difficult through the haze of drugs. Then he began asking me to pick where I needed coverage the most and told me my entire head could not get coverage, something that was news to me. Once he decided his game plan, he asked for 3 leads. One of the leads, called a 4-wide because there are 4 contact points widely placed, was not available. He began demanding it anyway, and the stimulator rep started arguing with him that he didn't need a 4-wide and could do it another way. I began to get really nervous at this point and started physically shaking. I knew something was wrong but I didn't know what to do about it. The doc and the rep then came to some kind of agreementand that was the last thing I remember. When I woke up in recovery, my doctor had gone home without talking to me or my boyfriend in the waiting room.

Between the surgery and my first follow-up, I hardly used my stimulator because the left lead kept stimulating my jaw (something that has not ever gone away). I thought I had 3 leads because that's what we discussed, but I didn't find out until my follow-up that I only had two 8-contact point leads! This made no sense to me because my ENTIRE head hurts. How could only 2 leads stimulate all the branches of the greater and lesser occipital nerves and the left AT nerve? A feeling of dread swept over me and I felt then that the leads were not going to work. Because the doctor and reps kept emphasizing that I needed to wait until I was completely healed before I could come to a verdict on the effectiveness of the stimulator, I decided to withhold judgment until the 12-week healing period was complete. I did. I got reprogrammed as often as I could - determined to make this damn thing work because I didn't want to go through another surgery.

I confronted my doctor and only got a carefully planned defense back from him. I knew after the 12 weeks were over I would be finding a new doctor to take over my pain management because I no longer trusted him. It was a tough 12 weeks. I blamed myself for trusting a doctor that obviously didn't think I deserved better care. I had to sit here knowing that as I recovered from this surgery another one was probably on the horizon. I had to see my doctor multiple times to get post-op checks, med refills, and to discuss the fact the coverage was crap. Every time I saw him I felt like I was being betrayed again. Those of us with chronic, incurable illness depend on our doctors considerably for a better life. The one doctor I really trusted has crushed my faith and left me questioning all of them.

I found another pain doctor in town who does ONS surgery. I plan to go see him and consult about moving my leads or doing an entirely new implantation. As for my current doctor, I haven't decided what I'm going to do about him. What I can do now, is give you a list of tips I think are important to keep in mind before undergoing ONS surgery:

1. Make sure your doctor spends time with you figuring out your pain patterns. You can draw them on a pain chart or just have him feel around on your head and create his/her own depiction. This can also be done with selective nerve blocks to certain cranial nerves responsible for head pain.  If the pain goes away after the nerve block, you know you've found the culprit.

2. Insist on a detailed pre-op appointment. When there, ask which leads the doctor plans to use and where. Ask which nerves they are intended to stimulate and how that will translate into coverage of your painful areas.

3. Ask how many incisions are planned for lead implantation, running the wires, and battery pack installation.

4. Ask where the battery pack will be installed. The typical site is in the low back. If your doctor has an alternate site, ask why.

5. Ask if your doctor plans to include enough wire slack so that you can bend over. You don't want to reach for something off the floor and feel the wires tug on your leads.

5. Ask how long your healing time will be and your recovery time. These are two different things, something I didn't realize.

6. Ask about the type of anesthesia used.

7. Ask how many of these surgeries the doctor has performed and how often revisions are needed.

8. Ask for testimonials. Each rep from the stimulator company has former patients willing to share their stories. Try to get in touch with these people.

I'm incredibly upset and frustrated, but I have a great support system and continue to practice acceptance around it. I just hope that my experience can help those of you planning for your own ONS surgery. Remember that you are an important patient and deserve to be heard. Don't be afraid to ask questions. If you feel any doubt about the doctor you have, seek a 2nd opinion. It's your body. It's your life. Be your own advocate.

Weeks 8-11 Post-Op

Sorry I've been MIA for several weeks. There just hasn't been much going on in my recovery and I've been pretty down about my coverage not improving. I've been reprogrammed twice and the reps still can't get the stimulation to the left AT nerve without involving my jaw.

So what has changed? I am able to sleep in a bed every night but it's still uncomfortable. I'm more active but still tire quickly. I had a few new programs added that partition each lead into two parts so that I'm able to control the balance of stimulation between the back and front of the lead. I'm eating solids again but only sparingly because it still irritates the left lead to chew too much.

Next week is week 12 and the supposed date that I'm totally healed. My lack of coverage leads me to believe that my lead placement just isn't working and will need to be redone. This is disheartening because this surgery was very hard to recover from. I put so much hope into this stimulator because the headaches dictate my life. To not have it work properly is nothing short of devastating. I'm very upset with my doctor because the lead placement I have is not what we discussed and he hasn't been helpful during my recovery period. I plan to dedicate an entire blog post to this later because I've learned a lot about what to look for in a doctor when seeking an ONS. As such, I will be seeking another doctor to take over my care and evaluate whether or not I need an alternate lead placement.

I want to reiterate how much faith I have in the ONS technology. I do believe that nerve stimulation is the path to pain relief for me, I just don't have the proper implantation. Until then, I'm just trying to take this disappointment one day at a time. I can't change what happened, but I can change how I move forward from here.

My Recovery Tips

Here is a list of things I found helpful after my ONS implantation. I had an alternate lead placement, so some items might not apply to your situation. I will add more as they come to me.

Ice Packs
These are a necessity. They help with the post-op swelling and are soothing for nerve pain and migraines. I found it was nice to have 4 so I could rotate them and always have a cold one. My favorite are the ones that are made out of fabric because they are less cold to the touch than those made only of plastic. I got the generic cold compresses at Walgreen's. I kept them in a pillow case rolled up to keep my skin from getting too cold.

Ice chest 
I kept an ice chest next to me to keep my ice packs and drinks in. Our freezer is a drawer under the refrigerator, and during recovery you are not supposed to lean over. So, I kept my ice packs in a ziplock, on ice in the ice chest so I had access to them while the boyfriend was at work. It was also nice to have bottles of water in there so I didn't have to get up everytime I needed a drink.

Sleeping area in which you can elevate your head and lots of pillows
The pain from the lead implantation kept me from being able to rest my head on anything during recovery. I slept on the couch so I could keep myself propped up against the arm (with the help of many pillows), but you might be able to accomplish the same thing in bed with pillows or maybe even in a recliner.

Straws
It hurt to tilt my head back to drink during the first couple of weeks, so I appreciated having straws.

Pill tracker and reminder 
I used a free app on my phone called Rx Caregiver. It allowed me to enter in the pills I was supposed to take on a schedule and pills I was supposed to take PRN (as needed). For the scheduled drugs, it sent me reminders. As I took PRN drugs, I just entered them into the app. That way if I lost track of what I had taken, I could view the drugs I had taken on my phone. A pen and paper would work just as well.

Timer 

I used an app on my phone to set a timer each time I took my pain meds. I found that if I took a dose too late and was in pain, it was much harder to get the pain under control than if I took them every 4 hours like I was supposed to.

DVDs
I recommend having a lot of mindless entertainment on hand, especially for the first week or so. I have Netflix and friends lent me some DVDs, so I was well-stocked.

Grabber
Because you are not supposed to lean over during post-op, it's nice to have one of these on hand to pick stuff up off the floor. I got mine at Walgreen's.

Cervical collar
Your doctor may order you to wear one. If not, you might consider picking one up at a medical supply store. They're inexpensive and I found my invaluable. For the first few weeks the swelling made the wires very tight, and if I didn't hold my head up right they pulled on the leads. Ouch! This also happened when I turned my head side-to-side. The collar helped me hold me head up in the proper position and reminded me not to turn my head to look at something but to turn my body.

Nightgowns
My battery pack was placed above my hip on my low back. Waistbands were painful because they put pressure on that area. I found nightgowns were the most comfortable thing to wear. I then progressed to my boyfriend's boxers because they had a very stretchy elastic waist. Elastic waists will be your friend if you have a similar battery placement.

Soft foods

I found it very difficult to chew during my recovery because of the placement of my left lead. When I chewed, the muscles moved under the lead and caused quite a bit of pain. I lived on mashed potatoes, creamy soups, smoothies, oatmeal, applesauce, yogurt, baby food, purees, and macaroni and cheese. There are lots of websites out there with recipes and lists of soft foods if you have to follow this diet, too.

Relaxation tools 

I burn lavender oil when I have a really bad headache. It helps to relax me because I get very tense when in pain. Do whatever helps you to relax - music, guided meditations (there are plenty of free podcasts for these), aromatherapy, deep breathing, etc.

Ask for help!
I'm a prideful person, so I hate asking for help. Surgery is a humbling experience that taught me how much support I had around me I wasn't utilizing. People were so helpful and giving and made the tough time a little nicer. That leads me to my next tip; the online care calendar.

Online care calendar 
There are several of these free sites to use, but I liked Lotsa Helping Hands. This calendar enables you to set up the days you would like help from others with meals, rides, visits, house cleaning, etc. Your friends and family can go sign up online to help with these tasks. I liked it for 2 main reasons: 1) people want to help, and this gives them something specific to do and 2) it keeps you from having to keep track of who is coming to visit and when - something that is difficult with a drug-addled brain.

Company 
I typically don't like people to see me laid up in my PJs, but I lost some vanity post-surgery. Spending most of the day by myself staring at the TV became boring quickly, and I loved having people over to chat. There were even days when I was in a lot of pain and felt like I didn't want a visitor, but after the person showed up I found that my pain decreased some after 15 minutes of chatting. There were also days where I was very frustrated with the stimulator's poor coverage and a visit with friends really cheered me up. So, good company can help with both the physical and mental aspects of recovery.

There are a few important caveats. First, only have people over that lift you up. If you have a toxic friend or family member that can exhaust you when you are well, you probably don't want them over while you're recovering. Second, set time limits, explicitly or just keep them in your head. I found I could get worn our pretty quickly - even when just chatting with friends. You don't want to overdo it.

The knowledge that I can say "no"
This was extremely important during my recovery. There were days multiple people wanted to visit, friends wanted to come in town and stay with us, a relative wanted to talk on the phone when I was in a lot of pain, and just my own expectations for myself to write a blog post or do chores around the house overwhelmed me. Your one job during your recovery is to take care of yourself. Period. If you don't care for yourself properly, you can set your recovery back. So, sometimes you have to say "no" to take care of yourself. Most people are usually understanding, but some people don't like to hear "no." I had one friend that wanted to come visit after another friend did, and I had to say no because I knew that would make me too tired. She was upset enough that she never tried to visit again during my entire recovery. I was frustrated that she took it so personally, but knew that ultimately I had done the right thing.


*Graphic courtesy of the blog Hyperbole and a Half

Week Seven Post-Op

The baby steps of recovery

Week 7 began with a reprogramming to decrease the pulse width of the left lead. The left lead was causing my jaw to spasm, so my doctor suggested decreasing the pulse width to stop this from happening. The hope was that at a decreased pulse width, I could turn the unit up higher increasing the chances of getting coverage to the AT nerve.

The rep was able to get my jaw to stop spasming at low to medium amplitudes on all of my programs, but it still spasmed at high amplitudes. He created a few new programs that moved the coverage a little further forward. The lead was still not stimulating my AT nerve, so my coverage continued to be poor.  The rep told me we could try again soon to see if we can fine tune it even better. 

Other new developments: I slept in my bed on my side 2 nights in a row. This ended in increased head pain so I went back to the couch. While at home resting I didn't need the cervical collar anymore. My energy increased a little and I got to go to a used book store to stock up on my entertainment.

What remained the same: daily headaches and mostly liquid and soft foods diet.

Overall I began to feel bored with constant couch and TV time, which to me was a good development. It meant I was feeling well enough that I wanted to do stuff, but my body just wasn't quite ready. That combined with the other new developments seemed like good progress. Each tiny baby step was thrilling after 7 weeks of slow recovery. I was still battling the frustration and pessimism over the poor stimulator coverage, but realizing that the stimulator can be programmed in more sophisticated ways (e.g. pulse width) gave me hope that eventually I could get the coverage I so desperately wanted.

Weeks Five & Six Post-Op

My recovery feels a bit like Sisyphus's punishment.
Each time I push the boulder up hill, it rolls back down.

I'm combining weeks 5 and 6 because there was relatively no difference in my recovery from week 5 to 6. There were good parts and bad parts to these weeks, but luckily nothing got worse.

First, the good parts. I did get more energy. I was able to leave the house to visit friends and go to a movie. I still couldn't drive, though, so to leave the house I must have a willing chauffeur. I'm lucky to still have friends willing to come by regularly to visit.

The bad part was that the headaches continued without abatement because the stimulator coverage is still poor. I'm still experiencing up to an 8 on the pain scale almost daily. I saw my doctor for the 1st time since the surgery and discussed my frustrations with the poor coverage and with him forgetting to tell me about needing to wear a cervical collar (something his nurse instructed me to do a week post-op).

With respect to the poor coverage, my biggest complaint is that the left lead that covers the AT nerve causes my jaw to spasm, making it impossible to turn the lead up high enough to get the AT nerve stimulated. He said he could instruct the St. Jude rep on how to change the pulse width to keep the mandibular branch of the trigeminal nerve from being activated by the stimulator so that I could get the coverage I needed. I've scheduled reprogramming for this afternoon to change the pulse width of the left lead. I really hope it helps because it is incredibly frustrating to still have daily headaches after going through the big ordeal of surgery.

As for the cervical collar, he claims I didn't need it because there was no danger of dislodging the leads by turning my head and that his nurse was incorrect when she instructed me to do so. Even if there was no danger of dislodging the leads, I benefitted a lot from using the cervical collar because it helped my weak neck muscles support my head which had to be upright at all times due to my inability to rest it on a pillow.

Another thing I learned at my appointment is that it can take 8-12 weeks until my head is healed from the lead implantation. I figured the 4-6 week estimated recovery time was also the estimated time table for healing, but I was wrong.

I was able to lie on my right side several times during the weeks for short periods. I can't rest the left side of my head on a pillow because the left lead is still so sensitive, but I can rest the right side of my head. Unfortunately, the battery pack is on the right side and I can't take much pressure there for long. So, I'm still stuck sleeping on the couch upright or resting face down on the massage table.

My diet is still mostly liquid. I am now able to eat really soft macaroni and cheese which requires little chewing. I'm growing pretty tired of smoothies and am trying to change up my routine a little to get some variety.

My spirits are low at this point because I don't feel like I'm getting any benefit from the stimulator. I was getting at least 30% pain relief during my trial and expected the permanent to at least be working as well. It seems that with each treatment I undertake, I spend a lot of time and energy with high hopes that this will be the one that gets me out of bed and back into my life. Each treatment has failed miserably, though, and sometimes I even come out the other side worse than before I started.

That said, I still refuse to give up on the stimulator. First, I'm only at 6 weeks post-op so who knows what can happen in the next 6? And if the reprogrammings don't work and the lead placement is deemed a failure, I can still try for alternate lead placement later. I believe the technology is sound and that all it takes is finding the right spots to place the leads to obtain good coverage and lasting pain relief.

Week Four Post-Op

The Convalescent Willard Leroy Metcalf

Week 4 was a bit of a roller coaster. I started out by getting worse but luckily ended the week feeling better. I think I overdid it activity-wise at the beginning of the week and paid for it. The swelling around the leads got worse and the pain increased. So I had to backtrack and rest a lot more to allow myself to heal. I was still on the couch 24/7 all during the week save a few trips to the massage table each day.

The dermabond came off of the incisions on my mid-back and neck. I ended up peeling off the dermabond over the battery pack incision. I was very happy with the appearance of the scar and all the bruising (and almost all the swelling) was gone. It was still tender if I pressed right on it.

The headaches were rough all week. I kept the stimulator on 24/7, but I was still unhappy with the coverage I was getting (especially with the left AT nerve lead).

By the end of the week, the swelling had subsided some. I also recovered enough energy to leave the house to have frozen yogurt. It felt so great to get out for a little while and rejoin the real world.

Just a reminder to those of you out there considering the surgery. I was disabled before I got these headaches from chronic Epstein-Barr and fibromyalgia. As such, my healing time will take about twice as long as the "normal" person because it causes these conditions to flare. Also, I got the stimulator not just for headaches but for nerve pain in my head. So, the sensitivity I feel in my head post-surgery might also be more pronounced than someone without cranial neuralgias.

Using My Neurostimulator

Here is a picture of the remote (or programmer) I use to control my stimulator. The paddle (or antenna) is placed over the battery pack (on the right side of my low back just above my buttocks) and I operate it with my right hand. I tuck the paddle into the waist band of my pants. With the programmer I can turn the stimulator on and off, select or change the program, increase or decrease the amplitude of the stimulation, change the balance of stimulation between the right and left leads within a program, and check the battery capacity. Here is a picture.

Below is a picture of my charging system. The box is a wireless charging system that I can plug in. When it is fully charged, it holds enough juice to charge the battery 2 1/2 times. The paddle with the wire is known as the charger antenna. I plug it into the charging system and place the paddle over my battery pack. I can charge it as much as I want, but currently I do it once a week. I usually have a little less than a 1/3 of the battery power left after a week and it takes about an hour to recharge it fully. I do it while I watch True Blood on Sundays, so it seems like less of a chore. 

Week Three Post-Op

Picture courtesy of the very talented
Deborah Leigh via Flickr.

Week 3 started out pretty well because I got another reprogramming that extended my coverage. I've had a different rep for each programming, and this one did the best job. The coverage was still insufficient - mainly because my jaw was still spasming when the lead for the left AT nerve was turned on, so I couldn't turn it up high enough to get to my painful areas. The lead over the left and right occipital nerves was getting better coverage, but I couldn't turn it up very high because the incision site was sore. I think the coverage will improve once I can turn up the amplitude. The bump under the tip of that lead decreased, which was a good sign. All of my swelling reduced some, especially the swelling over the battery pack. The bruising over it was almost completely gone by the end of the week and I only occasionally needed to use ice packs over it. I still used ice packs on my leads when the pain got really bad, but I tried not to because any pressure on them caused discomfort.

I was still having headaches regularly, so I kept the stim on constantly. The improved coverage helped with the pain, but I still had to take pain meds around the clock (although I was taking less than in the first 2 weeks). At this point, my headaches post-surgery were worse than pre-surgery, but that was to be expected. I have neuralgia (nerve pain) as well as headaches, so the trauma to the head from the surgery really irritated the nerves.  Since I can't turn the stim up very high, it isn't able to counteract that increased pain yet. 

The dermabond over the incisions on my head started to come off. I think the oil in my hair made them loosen up before the ones on my neck and back did. The incisions are completely closed, but still sore with palpation.

I was able to lie on my right side briefly (which is where my battery pack is). My head got sore before my side did - which was after a few minutes. Whenever I tried to move my head without my cervical collar on or rest my head on a pillow, the pressure on the leads was painful. So I was still sleeping sitting up on the couch with the cervical collar on. Being in this position 24/7 caused a lot of neck pain and inevitably headaches, so I was pretty frustrated. I tried to get up often just to stand or walk around and take breaks on the massage table. 

I was still very fatigued, which was to be expected with the surgery and my chronic illnesses. But I found that visits from friends were energizing and I was even able to read a little due to decreased pain medicine use. 

Week Two Post-Op

At the beginning of week 2, I had my first post-op appointment. A St. Jude rep met me at the doctor to reprogram the stimulator (a different rep from the one who programmed me in the hospital after surgery) and a nurse examined my incisions.

The St. Jude rep was able to explain why it was so painful to turn the stimulator on. There are 8 contact points on each lead, and with each program you can specify which contact points get stimulation. The programs I was set up with in the hospital only used one contact point on each lead - which was the equivalent of someone just poking me hard in one spot on my head according to the rep. I was pretty irritated with that information because it didn't make sense. My head was already very sensitive from the surgery, so this type of stimulation was just downright painful.

The rep gave me 4 more programs to use. One issue we kept running into when programming the left lead (over my AT nerve) was that the contact points at the top of the lead cause my jaw to spasm when turned on. This irritates the trigeminal nerve and causes quite a bit of pain. Unfortunately, it's these contact points that enable the stimulation to cover my most sensitive area - my temple in front of the ear. As I continue to heal, it's slightly possible that this will stop happening. The trauma from the surgery causes fluid build up around the leads. Fluid is a conductor, so the stimulation you feel after surgery is more intense.

The rep also showed me how to charge the battery and advised that I charge it fully at least once a week.  I can charge it all at once or in several small increments of time. The first time I charged I had about a 1/3 of the battery power left, and it took me 50 minutes to fully charge it.  

The nurse that examined my incisions said everything was healing well. When I asked about the bump that formed under the top part of the right lead, she was encouraged that I had noticed some reduction in size throughout the first week. She told me to continue monitoring it and that they would check it again in 4 weeks. When I inquired about the tightness of the wires, which by that point had become very uncomfortable, she attributed it to swelling and asked if I had been wearing my cervical collar. I was nonplussed by this question. When I told her that I didn't know what she was talking about, she informed me that the hospital was supposed to give me a cervical collar when I left and that I was supposed to be wearing it during my recovery. After doing some digging of my own, it turns out my doctor never put in a request for the collar, so the hospital didn't give me one. I was incensed by this oversight and when I tried to contact the hospital to pick one up, they didn't know what to give me and couldn't get my doctor on the phone. Luckily, a friend of mine had one and let me borrow it.

Once I put it on, my neck pain immediately reduced and I no longer had the tugging pain on the leads. Because I've had several years of a mostly "bed rest" life, my neck muscles are very weak. After the surgery, I was sitting upright 24/7 trying to support my head. I have a natural forward head posture, and this posture put strain on the wires which in turn tugged on the leads, further irritating the discomfort there. So the cervical collar gave my neck muscles a much needed break and allowed me to hold my head in the correct position.

This is pretty much what I looked like sitting on 

the couch in my PJs with my cervical collar on. ;)

Even with the cervical collar and reprogramming, I still had a rough week with terrible headaches most of the time. I kept the stimulator on all the time and even though the stimulation was pleasant, it still didn't seem to be helping enough because I wasn't getting sufficient coverage. The doctor and St. Jude reps all stress that as I heal, I will start feeling better coverage because I'll be able to turn the unit up higher and they'll be able to program the stim better.

During week 2 I also had to start a mostly liquid diet. The left lead that covers the AT nerve is on the side of my head, just above my ear. That whole area was super sensitive, and when I chewed it irritated it more and caused headaches. So, from that moment on until today as I write this (almost 4 weeks post-op), I've been living on smoothies, creamy soups, and pureed foods. Here is my favorite smoothie recipe. It helps me get sufficient protein on this restricted diet.

Like in week one, I spent the whole time on the couch watching movies or on the massage table. Friends continued to visit bringing meals, which always helped take my mind off the pain. I still took my pain meds around the clock and used ice packs religiously.

Week One Post-Op

I'm breaking my recovery experience into blog posts by week.  This first post covers week 1 starting from the night I got home from the hospital.

The first night, I was pretty woozy from the anesthesia. I ate a little chicken noodle soup, took some pain medicine, and got set up on the couch. I stayed on the couch 24/7. I had to sit up when I slept, because lying down was impossible with the pain from the leads. I couldn't take any pressure on my head. The first 4 days went pretty well. I took my pain meds around the clock and the post-surgical pain was well-managed. My back and neck were sore from the tunneling of the wires, and my low back/hip was very sore and swollen. I kept ice packs on these areas regularly throughout each day which seemed to help with the discomfort. I didn't have any headache pain but did feel sore and tight where the incisions were. I didn't use the stimulator much because when I turned it on, I got very intense pain at one spot on each lead. On the end of the right lead, a bump formed underneath that was very sore to the touch. It seemed to be caused by post-op swelling.

I was able to shower and wash my hair after 48 hours, but washing my hair was very difficult. I gently squeezed shampoo into my hair - there was no scrubbing of the scalp. The dermabond used on the incisions kept them completely dry and protected.

By day 5, the numbness in my head had totally worn off and the swelling from the leads really started to hurt. On top of that, I got a headache. I still couldn't stand to have the stimulator on very high at all, but I kept it on as much as I could in hopes it would help the pain. The rep warned me that the stimulator would not help with post-op pain, so I figured I shouldn't worry that it didn't seem to be very effective.

The wires also seemed to tighten up around day 5 (which turned out to be due to the swelling around them). When I moved my head, the wires would pull on the leads. This really hurt, so I tried to stay as still as possible. I started spending a couple of hours a day face down on a massage table each day that a friend let me borrow. It was nice to be able to give my neck a break and to lie down. I usually dozed while on the massage table, a lucky break since I was sleeping so poorly.

I had quite a few visitors during that week. My boyfriend and I started a care calendar through Lotsa Helping Hands. This site is free and enables you to set up a calendar through which your friends and family can sign up to help with meals, visits, rides, errands, cleaning, etc. We were well fed during week 1 - a welcome break to my boyfriend who was taking care of me on his own while working full time. It was also nice for me to have visitors to break up the monotonous hours on the couch. I highly recommend using a site like this because your friends and family want to help, they just don't know what to do. Also it takes the pressure off of you to come up with ideas of how they can help by allowing them to sign up for what they want to do and when.

Bionic Powers Activate!

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I'm finally feeling up to posting about my experience during surgery, but I'll have to save my recovery experience for another day.  Today is 3 weeks since my permanent implant surgery was performed, and I'm still waiting for my Bionic Woman super powers to kick in.

On the day of the surgery, I was supposed to arrive at 2:30 with a surgery time of 4:00.  My doctor, however, is notoriously late so I figured it would be running an hour behind.  I was in for a surprise - I didn't actually go back to the OR until after 6 and the actual surgery didn't start until about 6:30. I was pretty stressed by that point because I was hungry and had way too much time by myself in pre-op to worry about the surgery.

I was given fentanyl (a powerful pain killer) in my IV before they wheeled me back to help begin the sedation process. I was put on a bed face-down that had a large hump in the middle, so that my stomach rested on it elevating my low back where the battery pack was being placed. My head rested in a face-cradle that was pretty uncomfortable, but I knew I would soon be in la-la-land, so I didn't mind much. They had to tape the nasal cannula to my face because it kept slipping out at that angle and they did a double prep (meaning they covered me in that iodine soap twice - it was so damn cold). They shaved some hair at the center and left side, but left enough on top so that it would cover the bald spots. But to be honest, at that point they could have shaved my whole head if they thought it would help my headaches. I had lost all sense of vanity.

After I was prepped, I was given Versed to augment the sedation, IV antibiotics, and lidocaine injections into my scalp to numb the area for the lead placement.  Hollow needles were driven under the scalp to place the leads much like the trial surgery. The battery pack can handle up to 4 leads and 16 contact points (each lead has either 4 or 8 contact points). The doc planned on using 3 leads - one 4 contact point (quatrode) near the left AT nerve, one 8 contact point (octrode) to cover the left occipital nerve (greater and lesser), and one 4 wide-placed contact point lead to cover the right occipital nerve (see diagram of nerves here). The St. Jude rep with us in the OR didn't have the 4 wide-placed lead, so he opted to use two octrodes instead. One octrode covers the left AT nerve and left lesser occipital nerve. The other octrode covers the left greater occipital nerve and right greater occipital nerve. I'm still not sure that this placement will cover all of my pain, a frustration I will discuss later.

Close-up picture of percutaneous octrode

After the leads were placed, the St. Jude rep turned on the stimulator to make sure I felt the stimulation in my head. After that, I was put under using propofol to implant the wires and battery pack. The good news is that the lead placement didn't hurt nearly as bad as it did during the trial, proving that I was not given enough sedation during the trial surgery. In fact, I barely remember the lead placement during the permanent surgery. The original plan was to make one incision on my head for lead placement, one small incision on my neck to help tunnel the wires down (no wire extender was needed because they make super long leads now that go down to your neck), and one incision on my low back/hip for battery placement. However, I'm a thin person and the doctor warned me that getting the wires down my back would be difficult because the skin doesn't have a lot of give, so additional "nicks" might be needed to give my skin more stretch. They use a hollow plastic tube to tunnel the wires from your neck to the low back. I ended up with two incisions on my head to place the leads, one incision at the base of my head and one on my neck to help get the wires down, a "nick" on my mid back, and the incision on my low back for the battery pack.

Comparison of battery pack to silver dollar

Battery pack features

I woke up as they wheeled me back to recovery. It was almost 8:00 by then. The nurse told me they had washed my hair because it was full of blood - something for which I was very grateful! The St. Jude rep walked me through using the remote for my stimulator, showed me briefly how to recharge my battery, and told me there was a magnet I could use to turn the unit on and off if I didn't have my remote. He also programmed the stimulator with 3 programs, but told me that they would be insufficient because I was still numb from surgery and they program based on your feedback. For example, he would turn on one lead and slowly increase the power until I felt the stimulation. He would continue to increase it until I told him what level was comfortable and then when it became uncomfortable. The rep also gave me my post-op instructions and told me they had used dermabond - a surgical glue - instead of bandages and stitches to close up my wounds. This meant I could take a shower and wash my hair as soon as 48 hours post-op and sponge baths on the front only until then! Also no bandages with surgical tape, which was fantastic because I'm allergic to the adhesive on surgical tape. I was warned not to bend, twist, lift anything over 5 pounds, reach, or move my neck around too much for 4-6 weeks. I made sure my boyfriend was present during all of this because I knew I wouldn't remember much due to the anesthesia-induced wooziness. I strongly suggest to anyone having this surgery that you have someone with you for this part as well. I was sent home with an antibiotic prescription and a prescription for additional pain medication for 2 weeks.

If you click here, you can see pictures of my incisions at 2 days post-op. Warning - if you have a weak stomach for incisions, you might not want to look. They are pretty benign considering there are no staples, but there is dried blood under the dermabond. Next up, I will discuss my recovery experience. It might take me a few days to get it all documented. I want to be very thorough. I also plan to create a list of supplies I found important to have on hand during my recovery for those planning to undergo ONS implantation. Until then, wishing everyone relief from their pain.

Healing Humor

I'm still healing and not ready to blog, but I wanted to share a Tumblr site I found that has provided some much needed humor during my recovery.  It's called Laughter is the Best Medicine.  It provides you with a template with a picture of a cat and allows you to add your own caption regarding chronic illness. Here is one submission that is very applicable today.

Enjoy your weekend.  Hoping to post about the surgery soon.

Post-Op Update

I just wanted to write a short post to report that the surgery went ok.  I'm still in pain and not up for blogging a full account of the procedure. The incisions are healing very well and I just got a good report from my doctor at my wound check appointment.  The stimulator is not programmed very well because we have to wait for the swelling to subside, so I'm still having headaches.  I'm hoping that in a few weeks I'll be healed enough to get the stimulator programmed to give me better coverage and pain relief.

Trial Stimulator

My trial was pretty miserable.  The lead implantation was very painful and I didn't have strong enough pain medication to deal with the post-surgical pain.  I'm not sure how typical my experience is - I have read other accounts where people had fairly comfortable and successful trials. I will describe my experience as candidly as possible, but remember that it is just my own unique set of circumstances.

First, I was not asleep when they implanted the leads.  I was given an injection of local anesthetic in my head and light sedation with IV Versed (anti-anxiety) and fentanyl (fast acting pain med), but I was still very aware.  None of my hair was shaved, and a very small incision was made at about left center of my head - around the occipital ridge.  Hollow needles were inserted into the incision and were driven under my scalp to make room for the leads.  The leads were fed through the hollow needles for placement and then the needles were withdrawn.  Two leads were placed - one on the left to cover my occipital and auriculotemporal (AT) nerve and one on the right to just cover the occipital nerve.  The needle placement under my scalp was incredibly painful.  I can't even imagine how bad it would have been if they had not given me fentanyl. I've had many conscious sedation surgeries where needles were poked all over my head and neck, and this was by far the worst.

The leads were attached to wires, which came out of the small incision in my head.  The wires were secured with stitches in my scalp so that they could not be easily displaced. The wires were then attached to a wire extender (small plastic box). The wire extender and wire slack was taped to my back. Almost half of my back was covered in bandages and tape to keep this area secure and dry.  I was left a little slack in the wires between my head and back so that I could move my head without displacing the leads.

Two small lengths of wire (resembling CAT-5 cables) emerged from my bandages to be plugged into the stimulator unit with battery source that clipped onto my waistband.  I was given 3 programs to start out with which I could adjust the amplitude and the balance of amplitude between the left and right leads.

The first 3 days were rough.  I didn't ask for additional pain meds (very bad idea - don't try this at home!) and what I did have on hand was barely making it manageable.  The post-surgical pain was so intense that I couldn't tell if the stimulator was helping.  I kept it on almost all the time, though, because I did prefer having it on rather than off.  I think it did help distract my brain from the post-surgical pain. An important fact to keep in mind is that the area of lead placement and stimulation are the same.  So, it's hard to tell how much relief you are getting from your headache after needles have been tunneled under your scalp.

This is the new pain schedule I had to adopt during the trial.
Courtesy of Hyperbole and a Half

My head hurt a lot - and it was difficult the first 3-4 days to determine whether I had a headache or just post-surgical inflammation pain.  Luckily, on day 4 I met with my rep from St. Jude (stimulator manufacturer) and she was able to add a few new programs that were more helpful for my pain patterns.   They activated other contact points on the leads that were not activated with the other programs, thus the stimulation coverage improved. (Note: Each trial lead has 8 contact points.) I then started to notice some pain relief.  It wasn't until the last 3 days of my trial that I was able to take a headache, apply a stimulator program, and see good results.

There were a few issues that kept me from satisfactory pain relief.  First, the lead placement did not effectively reach my AT nerves.  My pain there is very significant (around temples, just above the ear), and the lead did not give me relief in the area at all.  Second, the left lead shifted slightly, and began to cause pain if the stimulator amplitude was turned up past a very low level.  Thus, I wasn't able to increase the stimulation enough to tell if I had pain relief at the left occipital nerve. Luckily, the lead placement on the right was done very well and I received effective pain relief on that side.  The St. Jude rep later explained that surgeons sometimes do the lead placement differently on each side during the trial to find out which placement works best.

A couple of other things made the trial uncomfortable.  First, I couldn't sleep.  Any pressure on my scalp was unbearable, so I had to sleep sitting straight up.  This is not something I do well and I already suffer from insomnia, so I only got a few hours of displaced sleep throughout each night.  Sleeping on the couch also caused a lot of tension and pain in my neck.  It was hard to move my neck and head around because of the wires coming out of the open wound - any slight tug on them was painful. Additionally, because you have an open wound, they gave me antibiotics to take for 10 days.  They caused horrendous acid reflux - so much so that it became painful to even drink water.  Finally, I have a slight allergy to the adhesive used on bandages and medical tape.  That allergy turned out to not be so slight when half my back was covered in medical tape. The next morning after my trial implantation, my entire neck, shoulders, and upper back broke out into a rash and there was nothing I could do about it except to take Benadryl consistently until it was removed. So I was itchy and couldn't eat, sleep, or move much -all of which made me cranky.

I feel very lucky that I had my boyfriend to help care for me and that several friends came to visit with stacks of DVD's, magazines, flowers, and cards to keep me occupied. I spent almost every second of that week on the couch unable to move around, so the entertainment made it much more bearable.

By the end of the trial, I knew I wanted the permanent unit.  Even though the trial was imperfect, my surgeon discussed a few things with me before surgery that put my mind at ease. First, the permanent stimulator allows for 4 leads instead of 2, thus he could get better AT nerve coverage with the permanent unit.  Second, the wound on my head will be sewn up with the permanent and I won't have to contend with wires and open wounds that keep the post-surgical pain alive and well.  I could also tell that where the coverage was working with the trial implant (right occipital area), I was getting 60-70% pain relief.

After the trial leads were removed, I had the most blissful shower and washed my hair gently.  I was only allowed shallow baths during the trial so it was heaven.  The lead removal was not painful at all. It took about 2 weeks before my scalp began to lose its tenderness where the leads were. The surgery activated a flare of my chronic Epstein-Barr, so I had mild fevers for a few days after the trial and reduced energy for about 2 weeks.  My headaches came back with a vengeance about 3 days after the leads were removed and were much worse for  2 1/2 weeks.  My theory is that they were enhanced by the scalp tenderness from the trial surgery.

My permanent implant is scheduled for tomorrow, August 3.  I'm excited, nervous, and just ready to get it over with.  I'm having the battery pack implanted in my low back just above the buttocks.  I will have 3 incisions - one on my head for the leads, one in my neck to put in a wire extender, and one in my low back to put in the battery pack.  The recovery time is estimated at 4-6 weeks, but with my other health ailments I know it will take longer.  I'm ready for it, though.  My life has been on hold for over 2 years because of these headaches - I can take a couple of months of convalescence.

A Restricted Life - Part 2

As much as I hate not being able to do many of the things that I love, I work on being in a place of acceptance with those restrictions. I try to accept that for this period in my life, there are many things I can't do. I also have worked to find appreciation in other activities that I can perform. I can pet my cats, watch a DVD with my boyfriend in bed, go to the movies with a friend, meditate, read for short periods of time, and write this blog.

Acceptance and gratitude are major players in the management of my chronic illnesses.  Acceptance does not mean resignation - I still fight to get better all of the time. It just means being okay with where you're at right now.  As Buddhist author Pema Chodron writes in Talking to Ourselves, "It isn't the things that are happening to us that cause us to suffer, it's what we say to ourselves about the things that are happening." If I spend every minute of the day angry about the pain and my restrictions, all I do is cause more pain. Pain begets pain.

Gratitude doesn't take my headache away, but it keeps me from wallowing in the pain and increasing my suffering. I can be grateful for what I do have - a roof over my head, disability and Medicare, a wonderful boyfriend and caregiver, and some friends and family that help the best way that they can. It also involves looking at some of the wonderful things that have happened in my life because of my illness. I got to leave a job that made me miserable, I have met amazing women through support groups that make my life better just by being in their presence, I have developed deeper empathy and compassion for others, I have been able to explore other interests I never had time for before, and I have learned that I can be a human "being" and not a human "doing."

If I seem nonchalant about this practice, please believe that it's the hardest thing I've ever undertaken. It's hard to feel accepting or grateful stuck in a dark room most of the time curled up in bed with pain. Some days I can't get to that peaceful place; some days I can. When someone first told me I should be accepting and grateful of my life as a sick person, I kind of wanted to smack them. The phrase "Attitude of gratitude" made me throw up a little in my mouth. I wanted to scream, "What is good about being sick? Couldn't I have learned these lessons in another, less life-altering way?" But then I realized, this is my life whether I like it or not.  Why not make it easier by learning to accept that for today, I am sick. I might not always be sick, but for today I am and that's ok.

A Restricted Life - Part 1

I've spent most of my time blogging about the technical aspects of my headaches. The point I've really wanted to convey is the impact they have on my life.  This part is difficult, because I don't want to seem ungrateful for what I do have.  I'm not in any way trying to convey a "woe is me" message, because I know things could be worse.  I just want to describe what the pain has done to my life in a way that helps me reach out to other people dealing with this pain themselves.

If I had to describe the effect the headaches have had on my life in a nutshell, I'd say that they take away my choices. For example, I can't drive anymore.  The pain and medications make driving unsafe, so I only reserve it for going to doctor's appointments.  When I ride in the car, I get a terrible headache that lasts for days after only 15-20 minutes.   So, I feel kind of trapped.  I was used to the freedom to go anywhere I wanted and the adjustment has been tough.

Other activities that I used to do that are no longer on my list of possibilities (unless I want a headache):

• Knitting and crocheting - This one breaks my heart. It was one of the few hobbies I was able to retain after contracting CEBV.  I can no longer look down at my work without getting a headache.
• Sitting in uncomfortable chairs - This pretty much rules out hanging out with friends at a coffee shop, bar, or restaurant.  We pretty much just eat take-out.
• Yoga - Another heartbreaker.  Gentle hatha yoga was one of my respites from the pain of fibro.  I've tried kundalini, hatha, restorative, and yoga nidra and every time I get a headache.
• Talking on the phone - I do ok with a hands-free, but holding the phone to my face aggravates the trigeminal and occipital nerves.
• Sitting on the couch - After about 20 minutes on the couch, a headaches starts to form.
• Working at a computer - I can handle short bursts.  It takes me a couple of days to write and edit a post.
• Looking down to read a book
• Resting my head on a pillow or back of chair
• Anything that rattles the body - extended car rides, boat rides, etc.
• House cleaning - Ok, I never really liked doing this, but it's a necessity and I like a clean house.  Thankfully I live with a wonderful man that takes care of this now

I'm sure I will think of other things as time goes on, but this is the best I can come up with right now. I'm excited about the possibilities that await me with ONS.  Maybe I can knit my niece something beautiful for her first birthday and actually drive to her party 90 miles away without a headache. :)

Treatments Galore

The decision to get an occipital nerve stimulator (ONS) implanted was not an easy one.  I first worked tirelessly with a neurologist, pain doctor, and various alternative health practitioners for over 4 years before coming to this conclusion. ONS is for intractable headaches - meaning headaches that are not easily treatable.  To get to a point where my doctor recommended the ONS, I had to try many other more "conservative" treatments.  They are as follows:

• Medial branch nerve blocks C2-C7 (2 rounds)
• Epidural steroid injection C6
• Trigger point injections of lidocaine into shoulder and neck muscles
• Deep tissue and trigger point massage
• Rolfing
• Occipital nerve blocks (5 rounds)
• Occipital nerve radiofrequency ablation
• Triptan medications
• "Preventative" medications (propranolol, Topamax)
• Nerve pain meds (Neurontin, Lyrica)
• Muscle relaxers
• Narcotic pain killers
• Antidepressants (tricyclic, SSRI's, SNRI's)
• Dental bite guard for TMJ
• Chiropractic care with myofascial release
• Traditional acupuncture (3 different practitioners)
• Chinese herbs
• Acupuncture into myofascial trigger points with electrodes attached to needles
• TENS unit
• Dietary changes (caffeine-free, gluten-free, soy-free, low-sugar, low-carb, low acid, no artificial sweeteners)
• Special pillows (Tempurpedic, Buckwheat, memory foam sleep wedge, feather)
• Ice packs
• Moist heat
• Stretching and physical therapy
• Yoga
• Meditation
• Aromatherapy
• Numerous supplements and other treatments with naturopath
• Counseling
• Exercise
• Activity restrictions

It's not that none of the above treatments ever worked.  Those that did help either didn't help enough or didn't provide pain relief consistently.  For example, the occipital nerve block injections were very helpful.  I got down to 1-2 days of pain a week with those, and the relief lasted about 6 weeks.  However after 4 rounds, they stopped working altogether.

My current treatment regimen is a combination of Norco (a hydrocodone/acetaminophen pill), a muscle relaxer, Gabapentin, ice packs on back of my head, moist heat on my neck and shoulders, occasional use of a TENS unit on my neck and shoulder muscles, lavender aromatherapy, and a dark room with a very soft feather pillow (anything firm puts more pressure on the nerves ---> more pain), and strict activity limitation.

I tried to combine several disciplines to approach my headaches holistically.  I'm sure there are a multitude of treatments I didn't try, but I'm comfortable with the knowledge that I did the best I could with the resources I had.  I have great doctors that did their best, and now agree that the ONS is my next best option.

Above picture is courtesy of the very talented Deborah Leigh via Flickr. My head often looked the same with all the needles they were sticking in me.

About my Pain

Before I start describing my pain patterns, I want to discuss the distinction between migraines and headaches.  The term migraine is so overused it gives me a migraine (not a headache!).  But seriously, when a person tells me they have a migraine while smiling and standing in a fully-lit room, I kind of want to throttle them. The term migraine has been bastardized and now means "bad headache" to most people. A migraine is a neurological event, not a bad headache.  Here is a list of migraine symptoms provided by www.familydoctor.org:

Possible symptoms of migraines

• Intense throbbing or dull aching pain on one side of your head or both sides
• Pain that worsens with physical activity
• Nausea or vomiting
• Changes in how you see, including blurred vision or blind spots
• Being bothered by light, noise or odors
• Feeling tired and/or confused
• Stopped-up nose
• Feeling cold or sweaty
• Stiff or tender neck
• Light-headedness
• Tender scalp

But the people who also insist that migraines are worse than headaches, are not always right either.  My occipital neuralgia headaches (or cervicogenic headaches) are often just as bad - and sometimes worse -than my migraines with aura (or classic migraines).  I get light and sound sensitivity, nausea, weakness, dizziness, and an extremely tender scalp from my occipital neuralgia headaches.  Also, whereas my classic migraines only last a day, my occipital neuralgia headaches are daily and I can be at a level 7 and above on the pain scale for days at a time.  It's possible I should be calling these migraines, but to keep myself and my doctor sane, I don't so I can distinguish them from my classic migraines.

Basically it's hard to tell what people mean now when they say migraine or headache, so I'm going to describe my pain patterns to clarify what I mean by those words.

Occipital Neuralgia Headaches
Occipital neuralgia means pain in the occipital nerves.  The occipital nerve emerges from between your 1st and 2nd cervical vertebrae, and runs up the back of your head on either side.  It is best diagnosed using a diagnostic nerve block into the occipital nerve. The block consists of steroid and lidocaine.  If your pain improves after the block, it's likely the occipital nerve is your culprit.

My pain is bi-lateral with a constant throbbing, burning, and sometimes stabbing that goes from my upper neck, to the back of my head, around to the temples, into my forehead, behind my eyes, and into my left jaw and behind my left ear.  The pain is much worse on the left side.  Other cranial nerves come into play with this pain - the auriculotemporal and trigeminal - so I technically have neuralgia of those nerves too. (See a picture of the cranial nerves here.  Also see colored head map that shows you which nerve is causing your head pain here.) I just call it occipital neuralgia for ease of use. The pain makes my scalp so tender that brushing, washing, and styling my hair is very difficult and some days impossible.  I haven't been able to lay my head down on a pillow without intense pain in a year. It is pervasive.  It is mind-numbing.  It makes me want to curl up in the fetal position and cry.

So how is that I function with this constant pain?  Drugs.  I will dedicate another blog post to the long list of treatments I have tried, but for now I'll just say that narcotic pain killers are the only way I make it.  I hate being on these medications because of the side effects and constant worry of dependency, but I also love them for giving me the ability to sit through a movie, go out to eat with my boyfriend, and sit here and type this blog post.

Migraines with Aura
My migraines with aura are usually bilateral, right behind my eyes and in my temples. The pain is both pounding and piercing.  If I don't take a triptan, I vomit. I'm nauseous for a couple of days.  I have light and sound sensitivity, tender scalp, and feel completely drained of all energy.  Triptans are most useful with these.

The Super Headache
Every once in a while, after a few days of intense occipital neuralgia pain, the headache morphs into a migraine without an aura.  I call this the super headache because it's a combo of migraine and occipital headache. The lack of aura means I typically miss the window to take the triptan.  For a triptan to be most effective, it needs to be taken at the onset of migraine.  If I miss the window with a super headache, a visit to an urgent care center for a pain medication injection is necessary.

Migraines and headaches come in many different shapes and sizes.  People with the same headache type can have very different pain patterns.  It's important to visit a doctor to get a proper diagnosis.

The good news about the stimulator is that it should be helpful with all of these headache types, so relief all around is on its way!

Above picture is courtesy of the very talented Deborah Leigh via Flickr

A Lifetime of Headaches

I got my first migraine with aura when I was 7, althought I didn't understand what it was at the time.  By the time I was 11, I started to get them several times a week.  These headaches would start with a visual aura, and end in agonizing pain with vomiting for 8-10 hours.  If you've never had one, it's impossible to explain.  It's like your entire body has the migraine.  Even when the stabbing pains in my head would cease I still felt horrible all over - weak, nauseous, and dizzy.  These headaches were tied to my hormones, so once I went on birth control I only got them several times a year in times of extreme stress.  When I did get them, Imitrex (sumatripan) usually helped.  My headaches were mostly under control, and I really didn't think about them much.

Then in 2007 came the virus that turned my entire life upside down and shook it, making sure no facet was left unaffected. It was Epstein-Barr (mono), which is usually annoying but pretty benign.  During the week of my acute infection, I had terrible neck pain and headaches that were different than any headache I had before.  I never got over the Epstein-Barr.  Four years later, I am still living with chronic Epstein-Barr virus (CEBV) which has spurred fibromyalgia and occipital neuralgia, those awful neck pain headaches.  The migraines with aura also started occurring more often, but I suspect that's from the stress of having chronic illnesses.  All of these conditions have forced me to leave my job and career, and now I'm mostly homebound.

About two years ago, the occipital neuralgia headaches became daily.  I have not had one day since where I didn't have a headache.  Using the pain scale of 1-10, the intensity averages at a 6, spikes up to a 8 at least twice a week, and never ever goes below a 3. Last fall, the condition progressed further to where I now have trigeminal nerve pain as well.  So my headaches now encompass my neck, head, and face.  Of all of my health problems, these pervasive headaches are what restrict my activity the most.

I've spent the majority of my life fighting headaches, and in the last couple of years the headaches have been winning.  I'm tired of bowing down to them and accepting my fate as the girl who has to spend all of her time in a dark room with an ice pack.  That is why I'm getting the occipital neurostimulator.  I need to regain the upper hand.

I plan to address what occipital neuralgia is, the treatments I have tried, how the pain affects my life, and my trial stimulator surgery experience in more detail in subsequent posts.  Stay tuned.

Intro and Mission

I'm at 31-year old woman with a long history of headaches. I recently decided to undergo surgery to implant a trial occipital neurostimulator to help control my pain from occipital neuralgia, a chronic pain condition that manifests as headaches. Before the surgery, I was incredibly nervous. I found that the blogs people had kept to document their experience through the surgery were very helpful during that time. I absorbed them and in the process learned a lot about the surgery and felt my anxiety lessening.  I want to document my experience with the surgery in hopes to provide the same education and solace to other headache sufferers considering the implant.

I had the trial removed a week ago and will get the permanent implant on August 3. This blog will only document my experience, so please keep in mind that I'm not a medical authority nor do I offer medical advice. I will try my best to keep up with the blog through this process and be as candid as possible.