Sudden onset ON, treatments not effective
 

Hi all,

I experienced what I thought was a migraine behind my left eye approximately a month ago after a particularly stressful morning. Within a few hours I began to realize that the pain was different from any headache or migraine I had ever experienced. Two days later the pain had migrated to the mastoid bone behind my ear at the back of my neck. After going to the ER, urgent care, my primary care doctor, and a neurologist, I was finally diagnosed with occipital neuralgia. I had MRI/MRAs done of both the head and neck and the only thing they could find was sinusitis, which didn't respond to antibiotics and couldn't account for the severity of my neck pain.

I received my first nerve block a little under a week ago and have been attending PT every week for neck stretching. It seems to have dulled the pain in my mastoid bone but I now have intermittent stabbing pain deep in my ears and a constant need to sneeze but am unable to. The most devastating effect is how badly it interferes with my ability to sleep and exercise. Even if I am relatively symptom-free throughout the day, the pressure of anything touching my head and neck at night is enough to wake me in excruciating pain. I get only 3-4 hours of sleep a night because I wake up feeling my pulse throbbing in my neck and temples. Similarly with exercise, I can't even walk for 15 minutes without triggering symptoms later in the day.

I have a history of concussion (over a year ago) that I have no idea if it is related to the current symptoms, but I doubt it. I didn't experience any headaches following the concussion and the pain was so sudden in onset that I'm blown away about how devastating it has been.

My neurologist is now concerned that I may have a combination of trigeminal and occipital neuralgia and wants to start me on a tricyclic antidepressant. I am so scared of medications and scared of this condition. It has already caused me to drop down to part-time at school. Prior to this I was an active and relatively happy 25 year old. This is taking over my whole life and destroying my relationship with my boyfriend. Please, if anyone has any advice to offer, I need it. I can't face a future with this constant pain and sleeplessness in it.

Hello there,

I'm pretty new to ON, but there are some things you can do to help. You were diagnosed quickly!

I tried a couple of drugs that were not antidepressants, but I had bad reactions to them (gabapentin and topomax). Amitriptyline (a tricyclic "antidepressent") seems to have way less side effects for me than the other drugs. Its a very old drug and didn't work well for depression. Its now prescribed for nerve pain. Its supposed to be way easier to get off of than the modern antidepressants. It does not effect my mood or my sense of self at all. I'm taking 30 mg now.

I like a heating pad on my upper back to ease the neck tension. I use ice packs on my head. I meditate and do yoga every day. I use the "posture pump" neck re-shaper, which I think really helps.

Keep track of what works and what doesn't work. This is a tricky condition, but it doesn't have to defeat you. Don't let it. You're young, so believe that you can get through this and you will.

Hang in there,
Melanie

I am tired now, eyes weary. If you remind me via message...I will respond. I have been dealing with some similiar since 3-3-14. Some of my history may help you.