system
A chat on subreddit /r/me_irl
human
Are we playing worst pain situation, I am in.

Two years ago I went to the eme room with a terrible headache. Diagnosed migraine, and sent home.

Next night I was in terrible pain with no relief from the headaches for a couple days. Dr did mri, and didn’t find anything, they were stymied. One dr mentioned shingles but that was disregarded. 

A specialist wanted a lumbar puncture to see if anything came up. By this point I did not GAF what they had to do. My head was about to bust open. Lumbar puncture barely hurt because my head was so painful. 

Four tubes of spinal fluid showed blood in all of them. Everyone got very serious, and an ambulance was called to drive me to a larger hospital 2 ½ hours away. There was a specialist and equipment there to look closely at my brain.

When the paramedic put morphine in my IV was the first time I was out of pain, and out in general, in days.

Waking up to the neurological critical care unit was terrifying. I was alone, as my husband had to get our pets taken care of, so he came the next day. 

As my blood pressure rose so did my pain. I had a Mri with contrast immediately. In the tube with a migraine is a special kind of torture. 

Until they found out exactly what was wrong with me, I was in an isolation area. It was to be my home for the next six days. 

Day by day my pain did not decrease, in fact it got worse, burning, stinging like hornets stinging my face. My scalp felt like a hot iron was being held to it. My eye felt like molten lava was pouring into it.

Also during this time I was having intensive testing done, to look for the suspected brain bleed. Multiple CT scans, MRI’s, brain scan where they went in through a vein in my thigh, to my brain. They could not find anything wrong.

For a time I lost my humanity. Horrific, mind bending, burning, stinging stabbing agony. Inescapable always there. Screaming at the top of my lungs, I tried to scratch my eye out with my fingers. Anything, anything, to stop the horrific pain. I begged, put me in a coma. Kill me. 

Holding my arms down by my sides, in a bear hug, my husband wept as he and the nurse did their best to help me. None of the pain meds worked. At one time my blood pressure, and my blood oxygen got scary low. It was an emergency. My body was done with dealing with such horrific pain.

Finally, finally an infectious disease specialist came in on day 4 or 5, took one look at me and said shingles! Shingles is herpes zoster. You can get it if you had chickenpox as a kid.  

It hangs around at the base of nerves, waiting for an opportunity to cause massive pain, and nerve damage. That is why opioid pain killers don’t really work. There are specific pain medications for nerve pain and they are slow acting.

Once I had a proper diagnosis and antivirals, I began to get better almost immediately. The terrible blisters backed off. Most never erupted, so fortunately no permanent scarring.

I was also on a massive steroid dosage, which I know helped tremendously. By day six I was in my own room, and day eight I got to go home. Hurray!!

Except the pain came roaring back. And I found out I would have to live with it. Shingles de myelinated the nerve endings on the top left quadrant of my scalp, face, and eye.
I had a shingles Zoster on my cornea. It caused me to be bedridden, in a dark room for three months.

In all I was basically bedridden, for about six months. My eye had ptosis, I have PHN, peripheral herpetic neuralgia. What that means is because of the massive nerve damage, it still hurts, stings, burns, itches. And it tries to come back. 

At first I had cold compresses, and ice packs 24/7. Also lidocaine cream helped. Sometimes I would be in so much pain, I would fill up a big bowl with ice water, and stick my head in it to help. I wore a patch over my eye because my pupil was not reacting. 

Two years out I have learned a lot about pain. It can start massively acute, and settle into chronic. I have a pain specialist, which is the only dr that can treat my condition.

My shingles was on the trigeminal nerve.  Trigeminal neuralgia is called the suicide disease. It is considered the most painful disease. Medication, and diet restriction have helped a lot.
gpt
Holy fuckin shit. Just reading that hurt. I seriously hope things get much better for you 

I'm gonna go try and get the shingles vax like tomorrow.