The Headaches That Ate My Brain
as of March 20, 2015
- February 2014: First noticed frequency of headaches: often severe. Seemed to coincide with beginning serious trauma work in therapy (relating to PTSD). Headaches waking me up in the night, etc. Began taking Tylenol #3 when headaches were severe, which was a few times/week. Could not take pain medications other than acetaminophen & codeine, due to chronic kidney disease.
- March 2014: Headaches growing even more severe and more frequent, now occurring every day & waking me up during the night almost every night. Scalp became increasingly sensitive, making it painful even to wash my hair.
- March 15, 2014: GP prescribed Tylenol #4 when Tylenol #3 was not strong enough. This still did not seem to help much. I’m an “under-medicater,” so I only took the pills when the pain was so terrible that I couldn’t function.
- April 2, 2014: Neurologist diagnosed the headaches as being caused by some combination of occipital neuralgia (caused by pinched nerve in my neck), codeine withdrawal, muscle tension, and eye strain from cataracts. He encouraged me to stop taking the codeine, but only after physical therapy began to help reduce the headache severity. He instructed me to be less stingy in my use of Tylenol #3 and/or #4 as needed, in order to try to avoid withdrawal until physical therapy began to take effect. This more frequent codeine usage seemed to help prevent the most excruciating of the headaches. The PT was delayed by the lead-up to 2 cataract surgeries in mid-May. Neurologist also recommended heat, massage, and acupuncture.
- May 2014: Miserably severe headaches nearly all day long almost every single day. Taking 2-6 Tylenol #4 tablets/day with little relief.
- May 15 and 21, 2014: Cataract surgeries. This did not seem to affect the headaches at all.
- August 6, 2014: Saw pain specialist & began reducing maximum daily Tylenol #4 dosage, because I wanted to get off the codeine as soon as possible.
- September 25, 2014: Stopped taking Tylenol #4 & started Butrans to continue weening off opiates. Suffered considerable opiate withdrawal.
- October 9, 2014: Opiate withdrawal continuing, but headaches began to improve a bit, back to the severity of before I began experiencing the codeine withdrawal (i.e., still quite severe, but no longer crippling).
- November 4, 2014: Began acupuncture twice a week (at Berkeley Community Acupuncture clinic).
- November-December 2014: Physical therapy (in conjunction with the ongoing acupuncture, PT stretches, talk therapy, and the ending of the codeine) seemed to help somewhat with preventing the tension headaches, but not those caused by the occipital neuralgia. Still having mind-numblingly severe headaches at least a few times/week and severe scalp sensitivity.
- January 2015: Continuing frequent acupuncture, PT stretches, and talk therapy about PTSD issues seem to be having a real effect & headaches become less and less severe. Headaches still every day, but not debilitating.
- February 9, 2015: Vacation caused me to temporarily stop acupuncture and talk therapy, though I continued with the stretches.
- February 18, 2015: Resumed talk therapy & continued PT stretches, but did not resume acupuncture because headaches seemed to be under control.
- February 27, 2015: Stopped Butrans. Completely off opiates! Suffered opiate withdrawal (GI distress & temperature regulation problems), but still no significant headaches.
- March 9, 2015: Experienced a severe headache for the first time since mid-January.
- Present: Now having severe headaches daily again. Went to acupuncture on 03/17/15, but have not yet seen improvement after only one appointment. Last time, it seemed to take a few treatments, close together, before it began to help. I would like to continue with acupuncture (while I continue the stretches and talk therapy) in order to get the headaches under control again.
Current things I’ve been doing that seem to definitely help the headaches:
- acupuncture 1-2 times/week (October 2014-present)
- physical therapy stretches several times/day every day (November 2014-present)
- talk therapy to deal with PTSD issues (weekly, February 2014-present)
Other things I’ve tried:
- codeine (Tylenol #3 and #4, but I stopped taking these due to withdrawal problems & cognitive side effects)
- increase in Neurontin dosage (this is ongoing, but we aren’t sure if it’s helping, but it definitely causes cognitive side effects)
- caffeine (didn’t seem to have any effect)
- acetaminophen without codeine (didn’t seem to have any effect)