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