neurontin...oxygen...prednisone....a diary (long)

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Posted by elizabeth ( on October 10, 2001 at 19:10:52:

9/17/01-Monday - on Neurontin 900mg/day. H/A that had me swerving my car for no good reason. ER trip. Toradol, which lessened the pain a bit.
9/18/01 through 9/20/01 - H/A ravaging, "why me?" syndrome several times daily. Couldn't go to work, couldn't read or watch television, couldn't really walk for that matter.
9/21/01, Friday - had to go to work or seriously risk losing my job. highschool homecoming game - went to see daughter perform pom pon routine and play with marching band. 20 minute H/A while in the stands - couldn't move, stand, etc. To top it off, realized that I've lost a good friend, another mother, seemingly due to these damn headaches.
9/24/01, Monday - left message for neuro's assistant because H/A seem to be getting worse rather than better on Neurontin. 3pm, pulled over to side of freeway; pain, crying, sobbing, screaming, pounding. Neuro calls me on cell phone-tell him I don't know what to do anymore because nothing seems to work on the pain. He increases Neurontin from 900mg/day to 1800mg/day. Okay, seems good....but... 3:45pm dentist appointment-arrived sobbing (think I really scared them!).
9/25/01 - took yet another day off work because of pain/H/A.
9/28/01-Friday - tried to have a life; went to sneak preview of "Serendipity". pain was unbelievable! I seriously believed I was going to die in that uncomfortable theater seat. Okay, no more movies for me.
9/29/01-up at 3am to drive daughter to marching band; went home and back to bed. had to spend entire day inside the house, either curled up or pacing. I counted 17 straight pain-free minutes that day.
10/1/01, Monday - realized that there were no noticable changes in h/a intensity or frequency yet, but appetite has certainly increased over the last week.
10/3/01-left message for neuro asking for O2. rough day at work - they're getting 'tired' of the pain angle apparently.
10/4/01-2 E tanks of O2 delivered. didn't make it in to work--ended up using most of one tank.
10/5/01-massive H/A (forehead dripping rather than the usual glistening sweat; numerous large, fast-moving 'eye thingys'; breakfast comes back up). it hit at work.
10/6/01, Saturday-first "exercise" in months - walked at the zoo. nap in late morning before zoo trip - yet no H/A right after waking up, so maybe the oxygen is really helping.
10/7/01-Six Flags Great America - pom pon competition. I highly recommend NOT going! 3 times came close to taking ambulance to nearest hospital. [no, didn't go on a single ride - I'm not that idiotic!]. Bus arrives back in Milwaukee - time for an ER trip...but it's too late for urgent care, and I despise the meds I get in the ER (side effects even though the meds don't work).
10/8/01-ER? no, not right now. 1/2 hr O2 w/ ice in dark, then 1 1/2 hour nap - didn't get next headache until 2 hrs after I woke up.
10/9/01, Tuesday: I've gained 17 pounds since the beginning of September - frustrating. Had 4 KIP-4s between 5pm and 9pm. I've had enough! I'm ready to do anything to get at least a break from the pain.
10/10/01 - started on 18 day course of Prednisone (hey, I said I would do anything). 4th stabbing h/a in L eye / L forehead by 10am. 1pm, several more 'short' dagger/stabbers with nausea. This Prednisone thing is not off to a good start - I'm so tense that I'm even yelling at the cats (they're walking too loudly). Today seems to be even worse than the last week or so.

So I'm on the Prednisone - I'll keep you updated. I pray this works!!! If not, I don't know what I'll do.

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