Day 23 of Hell

on the 5th of this May I experienced the worst headache i've ever experienced in my life (like a knife in my eye).  it started @ 9am & ended @ 5 pm.  the next day was worse.... and worse the next, and worse the next -each day they aways start @ 9am & end @ 5 pm (none of the 5 doc's who've seen me can explain why they start & stop so consistantly to the hour).  from 9 to 10 is the ramp up time, from 10 to 4 was complete agony, from 4 to 5 ramp down.  then the dull, normal, constant pain would just be there (it's always there).  

this episode has completely reset my pain scale, so the dull "normal" pain is a welcomed friend.  i know pain scales are relative to each person, but the severe acute time period of this it is between an eight & ten for me.  i've broken at least 10 bones, ripped my achilles tendon in half, gone through surguries, etc. -but nothing even comes close to the pain this is causing me.

I made an appointment with my doctor after the 3rd day.  when i made it to my doctor, my right eye was weeping uncontrollably and was extremely sensitive to light.  i have no history of anything even remotely like this, so my doc sent me to emergency room.  @ the er i underwent a ct scan & a spinal tap -all came back ok -no blood in the sinuses, no abnormalities in my head, no meningitis.  they put in my iv & gave me 2 doses (4 mg's total) of morphine & it didn't touch the pain.  a little bit later, they added another 2mg dose and it still was doing nothing.  i asked if they could give me more & they couldn't -but my nurse said he had another idea and shortly came back & put something else in my iv... & the pain was drastically decreased.  i can't remember the particular name b/c @ that point i couldn't even tell u what my name was -all i know is it was a barbiturate.  since that worked, they sent me home with a prescription for fioricet.

i followed up with my doc who refered me to a neurologist.  my neurologist did an mri & it showed i had a little bit of a sinus infection and a some distress on my right optic nerve but they still have no idea what the root cause is.

they put me on 50 mg's of lyrica to start for the 1st week & fioricet 3.  both lyrica & the barbiturate in the fioricet relax my central nervous system so the the nerve  can heal itself.  

for the a few days this combination made the pain somewhat manageable & I only had a acute pain until i took the 2nd fioricet 3 of the day (ie: after taking the 1st fioricet 3 of the day, i still experienced a great deal of pain, but when i took the 2nd dose of the day, it kicked the pain down considerabley.)  after a few days, the drug (or something else?), shrunk the severe pain window to 10 am to 3pm.  the ramp up time was still the same and the ramp down of the pain was just the "normal" pain.

the 2nd week the lyrica dosage went up to 75 mg's (while continuing the fioricet 3) & this mostly extinguished the severe pain.  

i've tried not taking the fioricet for a day, but the terrible pain quickly changed my mind.  i've got it down so i only take 2 of them a day (1 early, 1 @ lunch) & this makes the pain "manageable" (I still have acute pain until i take the 2nd fioricet 3 of the day).   but i don't want to live the rest of my freaking life like this!  i pray this is not the reality i've found myself in..........

any insight, guidance, suggestions, or encouragement will be greatly appreciated.

kindest regards,

torturedOne

[AnnaE]

I am very sorry about your pain. I can relate. I had severe, severe headaches when I was pregnant. I would turn my eyes in the morning, and if it hurt to move my eyes, I knew  it was a headache day. It was excruciating. I have never had a headache like that since then, although I get terrible allergy headaches. I can also get headaches from unexpressed anger. I learned some exercises in physical therapy that help my headaches. One is putting hand one on the back of my head, and the other behind my back.

Hormones can sometimes influence these things--but your pain sounds like the eye, or something related. Your pain sounds worse than my pregnancy headaches. Maybe a neuro ophthalmologist is next for you.

I hope the doctors here can tell you something helpful.. They should answer you tomorrow, as soon as their schedules permit.

[John C Hagan III, MD, FACS, FAAO]

Many diseases reveal themselves slowly over time and the cause is not immediately apparent. It would be wonderful to practice medicine if everything was easy to diagnose and easy to treat. You need to be under the care of a neurologist and if possible a neuro-ophthalmologist. "Distress of the optic nerve" is not really a diagnosis or something I can make sense of. I'm sure your neurologist has considered cluster headaches, facial neuralgias and tic dolereaux.

You may need to see a pain managment specialist also.

JCH III MD

[tormentedOne]

Thank for your response, Dr. Hagan.  I appreciate it.

My neurologist doesn't know the cause and is almost as frustrated as I am.  He suspects it might be viral & the membrane on the nerve probably has been damaged and the Lyrica might calm it down enough for it to heal over time.  

It seems to be responding to the Lyrica, since the 50 mg (3 x / day) shrunk the acute pain window from 10 am to 5 pm to 10 am to 3 pm each day; and the 75 mg (3 x / day) dosage shrunk the acute pain from 10 am to 12 pm.  The dull constant pain is always there, though.

He prescribed a 3 month regimen of the Lyrica (75 mg) and i have a follow-up with in a 2 months.

Every doctor I've seen has mentioned cluster headaches and I have a lot of the symptoms:  

-severe piercing pain in my right eye
-my right eye tears uncontrollably during the acute pain period each day (not like a river or sobbing.  Just enough that i have to wipe my eye a couple of time / minute)
-occurs at the same time each day

I do not have eyelid swelling, running nose, facial sweating, and my pain lasts much longer than cluster headaches do (before treatment, they lasted around 9 hours).

Thank you for your consideration.

[John C Hagan III, MD, FACS, FAAO]

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