- CASE FILE
I suffer debilitating, electric shock-like episodes of head pain that last 15-20 hours daily and nightly.
ABOUT THIS CASE FILE
I’m seeking help because the pain has become unbearable. I was diagnosed in 2011 with
- trigeminal neuralgia
- Glossopharyngeal neuralgia
- Vagal neuralgia
Since then, I left my job; I don’t drive; I stopped teaching yoga. I don’t need everything back....just the capacity to not be in pain all the time. To bend over. To turn my head. To lie down and sleep. To eat.
I’ve had 5 cranial microvascular decompression surgeries at Johns Hopkins and Winthrop Hospital. I have recently been treated at Cleveland Clinic, but they have told me that they are out of options for me — treatments or medications. I’ve also done acupuncture, meditation, changes to my dietary lifestyle and Botox.
These are my symptoms:
- Burning, electric shock-like pain that lasts 25-45 seconds.
- The pain pauses for 15-90 seconds and then returns.
- This typically continues for anywhere from 10-16 hours with no break, which leads to insomnia.
- During that period, I can’t talk, eat, walk, watch tv, read, bathe, brush my teeth without resulting in tremendous agony, or lie down.
- Triggers for pain include the following: extension of neck; turning head; cold air; walking. Any movement at all can trigger pain, even a small lift of my pinky finger.
- Muscle spasms.
- In addition to the pain, the medications that I’ve been on have serious side effects: exhaustion, memory loss, dizziness, and mental fogginess.
- The 2-3 meds (tegretol) that were effective made me have an anaphylactic response.