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.