In the Meantime...

Originally, I was told that my permanent stimulator would go in a week after the trial, which sounded great because I could get on with my life, and because I wouldn't have much time between the two to worry about pain. Unfortunately, my doctor scheduled my permanent installation (ha, sounds like I'm getting new kitchen cabinets or something...I wish!) for June 4. That made a 3 week gap between one stimulator being taken out, and the other put in. Ugh.

Lucky for me, the results of my trial lasted nearly 10 days. I was really surprised by that, but in a good way. I felt great for about a week in there. Then I felt the pain coming back slowly, and then suddenly I was hit with the worst headache I think I've ever had. Bedridden, puking, the whole deal. I thought I was gonna die. I couldn't even get up long enough to go to the doctor, but it wouldn't have helped anyway. They didn't want to give me another nerve block before the surgery...something to do with bleeding risks (I dunno, I don't exactly understand how a lot of those medications work). So I suffered. That initial horrible pain lessened after about 2 days and since then I've just been taking Tylenol like there's no tomorrow (no aspirin products because, again, increased bleeding risk at surgery time).

I'm now actually excited about getting the permanent implant. I was scared for a long time, but after going through the trial, and after going through that excruciating headache following the trial, I can't wait to have the implant in me. I know it won't be a walk in the park but at least it everyday the pain gets less as I heal (unlike with the headaches) and that there is an end in sight to that pain. Now if June 4 would just hurry up and get here...

Results of the Trial

The first two days of the trial, I really struggled to distinguish the surgical pain in my head from the headache pain. But on Wednesday the surgical pain diminished and I could tell where I still had pain, and therefore started adjusting the stimulation levels and getting familiar with the ONSTIM unit (that's what Medtronic calls their occipital nerve stimulators). The stimulator replaces pain with a tingling sensation. I thought it would drive me nuts but it was actually fairly pleasant, like a little massage for your head. And once you get the stimulation levels set properly, you pretty much cease to feel the tingling, unless you really concentrate on it. Sometimes, when you move your head or neck a certain way you can feel the stimulation more than at other times, but again, it's not unpleasant.

I found the stimulator to work quite well. I would say my pain reduction was 80%. I could even turn it off for periods of time and residual effects of the stimulation would continue to keep the pain at bay. The funniest thing is that because the nerves being stimulated are responsible for sensation to the scalp, when you have the stimulator on, your scalp is rather numb. That'll take a little getting used to but still, it's a million times better than a headache.

My pain has always been on my left. Unfortunately, once we got rid of that pain via the stimulator, I found that I also have some pain on the right...it must have been masked by the worse pain on the left all these years. I spoke to my doctor on Friday when the trial stimulator was removed, and for the permanent one, he is going to run a set of wires to the right side of my head as well. They will be connected to the same battery, so I won't need two batteries, but unfortunately that means more wires and more tunnelling under my skin when they implant the thing. But again, I'd rather do that than start having to deal with headaches on the right side of my head and go through this all over again in the future.

I've had the stimulator out for 2 days now, and am still not feeling much pain since the stimulation effects can last a few days, although the process of removing the wires was rather unpleasant in itself. It was just done in the doctor's office...no numbing, no nothing. Actually the worse part was having the stitches taken out, as they were still very raw, not having the wires removed. I could barely feel that part of it...luckily. Unfortunately they are waiting two weeks to implant the permanent device. I guess I have to heal up from the trial a bit before they start digging around again. Honestly, I'm ready to have it now. It will be more painful than the trial, as I'll have wires on both sides of my head (I have no idea how I'll lay my head on a pillow to sleep) and because I'll have the battery implanted in my chest. But it's still an outpatient procedure and I definitely think it will all be worth it in the end.

The Trial

My trial stimulator was scheduled to be "installed" on May 11, 2009. It's an outpatient procedure that supposedly only takes about 20 minutes. Nonetheless, I was horribly anxious about having wires put in my head, about the fact that they said I'd be awake for the surgery, and that they'd have to shave off a bit of my hair.

During my surgical consultation the week before, we had decided to put two wires in, both on the left side since that's where my pain has always been. One wire was to cover the occipital nerve, the other was to cover the auriculotemporal nerve (if I remember correctly). Both nerves control sensation to the head. The occipital nerve controls sensation by the base of the skull and the back of the head, while the auriculotemporal nerve controls sensation near the temples and on the top of the head. There are other nerves that may also be targeted with nerve stimulation, but these were the two that were found to be causing my pain.

When the time came, they actually put me under for the surgery. I remember them prepping me, the doctor double checking where my pain was to make sure he was putting the wires in the correct place, and then before I knew it I was asleep. I wasn't even expecting to fall asleep. I had been told they would use a local anesthetic, and would give me some sedation, but that not enough to put me under. I woke up when they were turning the stimulator on. They wanted to make sure I could feel it, that it was covering the proper locations. The whole thing was much less scary than I had anticipated. And they didn't even shave off any hair!

The wires were inserted a bit behind my ear...one headed up toward the top of my head, the other headed down toward the base of my skull. They were secured by a few stitches here and there, but the stitches were buried in my hair. I wasn't sure what to expect pain-wise, but I wasn't given any pain medications, just an antibiotic. But the pain was tolerable, I never felt the need for anything stronger than some Tylenol. Sure, my scalp was quite tender because I had just had wires burrowed into it, but I guess the pain was about as would be expected...not as painful and an incision but still tender to the touch.

During the trial period, the wires just come out of your neck and are attached to an external power source which you must carry around with you (it's on a little clip that attaches to your belt). There are also some wire connectors and whatnot that are taped to your neck and shoulder (as you can see in the photo). According to my doctor, the biggest risk during the trial period is infection, because it's considered and open wound where the wires come out of your neck, even though it's stitched up. You cannot shower during the trial period. My doctor decided to leave the trial stimulator in until Friday, so I had 4 full days to decided if it was working for me, and whether I'd want to proceed with having the permanent stimulator installed. I've heard of trial periods lasting up to 10 days but honestly, I had my answer in less than 4 days and was ready to get those connectors un-taped and that battery pack unhooked by Friday so I thought a 4 day trial was sufficient.

Why Occipital Nerve Stimulation?

I've gotten some fairly negative reactions from people when I describe the procedure I've decided to undergo. They act like I'm insane for allowing someone to put wires in my body, along with an implanted battery that will leave a big scar, and still have to be replaced down the road. But these are the people that don't seem to understand the pain I'm in...that without a nerve block or some other form of intervention, my pain is so bad that I am non-functional. I can do nothing other than lie in bed. And as I've already discussed, the nerve blocks only last a week so that is hardly a solution.

No, occipital nerve stimulations specifically is not FDA approved, but very similar procedures are and that's good enough for me. Botox isn't FDA approved for headaches either but I've tried that and found relief in it so this FDA approval thing isn't a hang up for me. Do I really want to go through surgery? No. In fact I'm scared to death. I've had to take anti-anxiety medications the last few days just so I don't lose my mind. Do I really want a 2.5 inch scar across my chest for the rest of my life? No. I'm only 28, I still have a few years worth of being vain about my looks left. But the thought of having to live with this pain scares me more than any of these other things. And anyone that questions this decision has obviously never dealt with chronic pain, nor has been in severe pain long enough to make them desperate for options.

Are there other options out there? Yes...and no. For those that don't want something implanted in them, radiofrequency lesioning is an option, but again, it's far from permanent. It only lasts about 6 months. Not an option for me as I live 1000 miles away from the doctor that would do it for me. And there are smaller neurostimulators in the works, such as the BION stimulator, but these aren't readily available to patients yet as they are still undergoing trials. Maybe in another year or two they will be, and will be a great alternative to these bulky traditional nerve stimulators but I can't wait a year.

Another upside of the occipital nerve stimulator is that it's completely removable. Sure, you'll still have scars, but if something changes, and you don't need or want it anymore, it can be taken out. I have a feeling mine will be in for the rest of my life, but I know that for some people, the idea of reversibility is appealing.

But I think the best thing about this implant is that they do a trial run first. They put in some wires for 5-10 days to make sure it actually works for you, and if it does, then they implant the whole nerve stimulator, battery and all. But if it doesn't work, you are not stuck with a surgery and an implant that are worthless...all you have is a few scars under your hair that no one will ever see, and you can move on to the next option for headache treatment...if you have any more options.

So I guess I chose occipital nerve stimulation out of a lack of other options, but also because I think it's the only thing out there that will work for me. I haven't come across any other option that seems to promise the same relief that this implant will. Surgery, implants, wires...the whole thing scares me. But having this pain any longer scares me even more. I am ready for this.

Choosing Occipital Nerve Stimulation

Before going to Dr. Suwan, I had never heard of occipital nerve stimulation. I knew my pain was in my nerves, that no medications could help it, and that the only relief I got was from nerve blocks. But the nerve blocks would only last a week, so that wasn't a solution to my pain, especially since I lived in Wyoming, and Dr. Suwan, the only one I'd found to do occipital nerve blocks, was 1000 miles away in Chicago. I just kept telling myself, "there has to be a more permanent solution than nerve blocks. What do other people with chronic nerve pain do?" And when I pushed this subject with her, Dr. Suwan told me about occipital nerve stimulation.

Nerve stimulators were originally developed for people with back pain, and are FDA approved for that treatment because they have proven quite successful. They are not, however, FDA approved to treat headaches. Not yet, anyway. That's not to say they haven't been successful, or that not many of them have been implanted to treat headaches...the FDA just wants more studies done specifically on how nerve stimulators treat headache pain, and those studies simply aren't available yet. But for me, as I believe is true with most people who have suffered from chronic severe headaches, the FDA approval couldn't mean less to me. The fact is that thousands of people have found relief through occipital nerve stimulation and I was being offered an opportunity to return to a normal life instead of dealing with pain every day so there really was no choice...it was quite obvious.

Convincing the company that manufactures the nerve stimulators (Medtronic) and my insurance company that I was a good candidate for the implant was another story, but again, it was worth the battle. They wanted to see years of medical records to document that I had done everything possible to treat my headaches and that a nerve stimulator was my last option for relieving the pain. Luckily at this point I had 13 years worth of records and had done everything any doctor could possibly think of so they ended up giving me the green light. It took weeks for them to review the stuff, which was an anxious and frustrating wait, but it was worth it. Suddenly an occipital nerve stimulator was not just going to be an idea for me, it was going to be a reality. And that's when the anxiety kicked in.

Finding the Right Doctor

I've been to many, many doctors during my struggles with headaches. It seems that whenever you have migraines, you are sent to a neurologist. The problem with this is that to a neurologist, who is used to dealing with people who have severe problems that inhibit their physical performance, a person coming into their office walking and talking normally isn't a priority to them. In fact, you are one of the lowest priorities on their list. Your problem isn't visible, it's nothing compared to a stroke or Parkinson's patient. And yet this is who headache patients are sent to. So it's no wonder most of us are frustrated with the level of care that we get. Not to mention that there are so many causes for migraine, they are so hard to pin down, that a neurologist isn't necessarily the proper person to be treating you. But until you can find the cause of your headache, it's hard to say which type of doctor you should be going to.

When I finally decided to go to Chicago to get help once and for all, I decided to go to a doctor that specializes in headaches. Not just a headache clinic, or a neurologist, but someone renowned for their headache treatment. I found Dr. Nesreen Suwan in Lisle, Illinois. She has a background in neurology but she is also a pain specialist...a rare combination. But even more rare, she is a headache sufferer herself. This makes her more empathetic toward her patients than any other doctor I have ever seen, which is something that is really priceless in the struggle with headache treatment.

Dr. Suwan didn't repeat any of the things I'd done with other doctors, which was great, as it seems to me that doctors always seem to have their own protocol and have to follow it, even if you've already done those things...it's such a waste of time and resources. And Dr. Suwan thinks outside the box. During my first visit with her she offered me options that no one had ever mentioned to me before.

What I've learned is that you have to stand up for yourself. Our society seems to have this odd idolization of doctors. We treat them as gods, when they are no more than mere humans like ourselves. I have walked out of several doctors' offices and never gone back because I didn't like their attitudes or practices, or because they just wouldn't seem to listen to me. There is no shame in that. There were many times when I refused to take drugs a doctor wanted to prescribe because I didn't think that was in my best interest. You don't have to do what the doctor says. Always remember that you are in control of your health and healthcare. If you have a doctor you don't get along with, go find another one. If you have a doctor that isn't helping you, go find another one. If you have a doctor that won't listen to you, that has their own agenda, go find another one. If the doctor isn't doing what you want, speak up. Sometimes it's hard, but it is crucial to taking care of yourself. It's that old cliché: No one will help you if you don't help yourself.

The History of My Headaches

I got my first migraine when I was 15. I didn't know what it was. My mom took me to the emergency room, where they ran a bunch of tests (CT scan, blood work, spinal tap, etc.) and then just loaded me up with narcotics and sent me home. I spent 2 weeks on the couch in the basement where it was dark and quiet until the pain went away. That initial headache went away, life went on, and the migraine cycle began. I started seeing a neurologist, who just gave me drugs, of course. But I only got a few headaches a year so at this point, the migraines were easy to deal with.

I moved to Colorado to go to school when I was 18. I still had headaches, still went to a neurologist, but they were manageable. I did the whole journal thing, couldn't figure out anything my headaches were connected to, so I just had some rescue drugs (Zomig). I did not like that neurologist...it was obvious that he couldn't have cared less about me and my headaches and wasn't interested in doing anything other than prescribe drugs for me. In fact, he did so little for me that I can't even remember his name anymore.

I moved to Wyoming in 2002, and shortly thereafter the headaches started getting much worse. I went from having a few migraines a year to a few migraines a month. I started missing work on a regular basis (although my job was very understanding) and I began missing out on social events due to my headaches. They were really beginning to interfere with my life. There wasn't a neurologist in town, so I went to my GP, who was the most caring doctor I ever went to and she did as much for me as she knew how. She ordered another MRI and sent me to physical therapy, wrote me prescriptions for massage and chiropractic, and tried the newest drugs that were out there. She finally got to a point where she admitted she didn't know what else to do for me...which I respect. She sent me to the University of Utah's headache clinic, which is run out of their neurology department (of course).

The doctor I saw in Utah had done nothing but treat headaches for 12 years so I really had high hopes for her. But she was a neurologist at heart and did what they all do...threw drugs at me and told me to come back in 6 months. All the drugs did was give me annoying side effects; they did nothing for my headaches. I traveled back and forth between Wyoming and Utah for several years for treatment, as I figured a specialized "headache clinic" was the best I could do, even though it wasn't helping me much....and the headaches continued to get worse.

In 2007 I moved to the other side of Wyoming, where it was too far to drive to Utah for treatment anymore. I found a local neurologist who was ridiculously arrogant but he was the only neurologist in town and the only one who said he treated migraine patients so that's what I was stuck with. Early in 2008 I was hospitalized with a headache that wouldn't go away. By the time I was hospitalized, I had had the headache for 3 weeks. I was in the hospital for 10 days, and pumped full of a ridiculous amount of drugs before they could get it to go away. The one thing that finally worked was Droperidol...a drug that has a black box warning, meaning you have to be hooked to a heart monitor while you take it. That scared the hell out of me because I was only 27 years old. A week after I got out of the hospital, the headache came back. I ended up only working intermittently, and could not plan my life from day to day because I had no idea how I would be feeling at any point in time.

When my quality of life declined so that I was missing work 40% of the time, I decided to pull out all the stops. I found a new neurologist, one that was from a town 3 hours away but at least he seemed to think outside the box a bit more. He started giving me Botox injections for the headaches, which helped a bit. I started getting chiropractic adjustments and massages weekly. I got acupuncture. I went to a naturopath. I got another MRI done. When they found a bulging disc in my neck, I travelled to Montana to have a discography done...a horribly painful and frightening procedure...just to rule out that the disc was causing the problems. Nothing helped, nothing gave me any answers.

Another major headache hit me in September. This time I traveled back to Chicago and went to the Diamond Headache Clinic. I was admitted to their inpatient clinic for a week...and administered the Droperidol again to relieve the headache. The doctors at Diamond knew that by this time I had tried every drug in the book, and yet the still just threw drugs at me. They were not helpful at all. They refused to work with my doctor in Wyoming and would only treat me in their clinic. I was wholly unimpressed.

I went back home to Wyoming and fell into a cycle of painkillers, because there was no other way to get through the day most of the time. I quit all my social activities, quit riding my horses, quit doing much of anything but laying in bed. I would call the neurologist constantly, asking him to come up with something else but all he would do is prescribe me more drugs...steroids, anti-epileptics, narcotics.

The pain was constant, and it got worse every day. This was beyond a simple migraine. I truly believed there was now something very wrong with me but couldn't seem to get help. Eventually the narcotics quit working, and I was desperate. So I started doing some research. I decided it was time to go somewhere, anywhere, and do whatever it took to get my life back on track. I obviously wasn't going to get the help I needed in Wyoming so it was time to go where better doctors are. I took 12 weeks leave from work in March of 2009 and travelled to Chicago to find someone to help me once and for all.