My Epidural Headache Story

Recently posted this on the baby board I frequent.  It was in response to someone who told their story.  The ladies responded to her saying she was using scare tactics on first time moms, and the risk of that happening is so rare she should have kept the story to herself.  I spent time writing it out and no one wanted to hear about it.  Typical.  I deleted the story, assuming no one wanted to hear it, I am adding it here.  I will also add more details here.  Since I was trying to keep it short and sweet on the message boards.

Something ironic about posting this story here.  LOL

I just want people to be aware of the risks involved.  When they tell you that a small percentage get a "headache", they are pooh-poohing the worst and most dangerous headaches that exist.  I think was more than only 1% suffer too.  Here's my story.

I want to start by saying my first labour was great (as great as can be) and I had an epidural.  I had no side effects or any problems.  A little pain in the injection point, but nothing bad enough to mention.  I was more concerned with the tearing that was not properly stitched up.  I'm not just complaining.  I had to have some reconstruction done on my vagina after I birthed my son.  My poor vagina will never look the same.  LOL

However, with my second, things went very bad.

I waited until I really started hurting to get the epidural this time.  Not when it was convenient for the anesthesiologist.  That was probably my first mistake.  I have a feeling that she was about to take her lunch break, but popped in to see how everyone was doing before she left.  She came into  my room and did not appear to be very happy.  She read me the risks, and had me sign the paperwork.  In retrospect, I wish I had taken time to read the documents.  I feel like she was in such a rush to get things done that I was rushed to sign the papers to get it over with.  It took several attempts to get the epidural into my spine.  But once it was in, I got the standard one-hour shot in my IV, and was told that the epidural will take over in an hour.  After 45 minutes I started to feel the contractions.  The nurses did not believe that it wasn't working, and thought that I was just complaining.  They offered me the option to click an extra pump every 20 minutes, but it didn't work at all.  After a few hours or natural labour, I finally asked them to remove my urine catheter because it was very uncomfortable.  That's when they finally believed me.  The anesthesiologist came back in, in an even bigger huff, and jammed me so deep it hurt terribly.  But it finally worked.  I was itchy like crazy, and that never happened with my first labour.  Again, they thought I was exaggerating the symptoms, and offered me some Benadryl.  I declined.  I had enough of the drugs at this point.

After I delivered my son, they removed the epidural catheter from my back and I immediately had a terrible pounding headache.  I was told it was just because of the pushing.  I got some regular strength Tylenol, and a chart, and the next day I was sent home.

The next day and the day after I was in terrible pain.  I had ringing in my ears, pain so much when I would sit up or stand up.  I only felt good when I was laying down.  In Ontario we have a service called Telehealth.  After I had a long nap, I work up and felt great, until I sat up.  The pain hit me like a ton of bricks, and I was able to determine that the pain only happened when I sat up.  I had never had a headache, including vomit-inducing migraines, that couldn't go away after a good long sleep in a dark room.  I was very scared, so I called Telehealth and told the nurse.  She suggested it was an epidural headache, explained a bit about it, and suggested for me to go to the hospital.  

I packed up my 3 day old newborn went to the hospital closest to me, not where I birthed my son.  It was the same day my milk came in.  There I was, sitting in the ER with my newborn baby, trying to stay away from the sick people, crying my eyes out at the front desk for an hour.  They kept bringing me apple juice and cookies to calm me down, and finally got me in sooner since I was causing such a fit.

After meeting with this hospital's anesthesiologist, she suggested a blood patch.  Three lovely nurses held and cooed at my son while the Dr withdrew 20 cc of my own blood, and then poked it into my spine.  Instantly, my headache was gone.  I was so relieved.  She told me that despite her own specialty, she also suffered from an epidural headache.  She told me to take it easy, but don't really do anything differently.  Later that night, as I was bending over to pick up my son (only 7 lbs) I felt a strange sensation in my spine and BAM!  Headache came back in full force.

I didn't want to go through another blood patch again.  I dealt with the pain for almost a week.  It was terrible.  On top of the audio disturbances, I started to have visual disturbances.  Ringing in my ears, flashing in my outside vision,occasional deafness in my right ear.  The pain was getting worse and worse.  The day I felt like the right side of my face was getting a little numb was the day my husband called the anesthesiologist that did the blood patch.  At this point, she didn't want to be involved anymore.  She said to go back to the hospital where I birthed my son since all my birthing info was on file there and thought the other anesthesiologist should know what's happening and take accountability.  So, off to another ER.

At this hospital, the on-call anesthesiologist didn't want to repeat the blood patch.  Apparently, it's really rare to need a second one.  But after hearing my story and seeing my budding facial paralysis, he ordered another blood patch.  He was scared that since my cerebral spinal fluid was leaking out in what could only be such a fast manner, I was doing damage to my brain stem.  Basically, my brain wasn't floating in cerebral spinal fluid anymore and was now resting right on my skull.  He performed the same blood patch procedure.  I had the same relief.  I was given the same instructions.  The only difference this time was that the headache was still there, but this time it took longer to feel the same level of pain.  If I laid down, it went away, but it still came back after a few minutes.

Later that week I went to my GP for my sons first check up.  She was very concerned.  She was the only doctor to tell me that some unfortunate women get headaches for the rest of their lives because the hole can't ever close.  She told me to go home and lay supine in bed for one solid week, only getting up to pee.  He theory was that the second blood patch might have allowed some clotting, but there might have been what they call a slow leak.  She thought I needed some time to allow the scar tissue to close the hole, and I needed pain relief.  I guess laying on the table, crying in pain gave it all away. 

I'm very lucky that my best friend was able to stay and help me care for my newborn.  I wasn't allowed to do anything for myself.  I could only pee, and I had one shower that week.  My mom, my friend, my husband, they all picked up my slack and cared for me and my children.  My husband was so stressed out by everything that after the wee was up, he made himself physically sick with worry and stress.  I was useless, and popping extra strength Tylenol like it was candy.  Drinking coffee, pop, and so much water I felt swollen.  The theory is that the more water you drink, the more cerebral spinal fluid is made and helped my brain stay more floaty.  The worst part was that my 17 month old daughter stopped crying for me.  She stopped caring if I helped her to bed.  When she came in to visit me, she would look at me like a stranger, but kiss me never-the-less.  Eventually, I spent my days and night crying.  After my week in bed, I slipped into a deep deep postpartum depression and was put in Zoloft for the next 6 months.  It took a few weeks, but the depression started to fade as the pills kicked in.  I was still in pain, but it wasn't anything like it was.  I spent most of the next month sitting on the couch having a cleaning crew come in to clean for me.  My daughter wasn't very high maintenance back then.  She was happy to  suck her pacifier and watch TV with me while I nursed my newborn.  She still went to daycare a few days a week, so I felt able to focus on healing myself during the day.

In the end, it took 6-8 weeks before I stopped feeling pain.  To this day I have worsening vision only in my right eye, and my right pupil is significantly larger than my left.  My opthamologist wouldn't confirm it's from the epidural headache for liability reasons, but she says it's completely possible.  I also had lots of spinal pain from the injections.  In the end, I received 8 pokes into my spine from the various epidurals and blood patches, so there was a lot of scar tissue locking this vertebrae together.  With lots of massage therapy and acupuncture, my spine stopped hurting after about 18 months.  On some days I can still feel pinching in that area if I'm very active.

It's sad, but I can't look back on the first 2 months of my son's life without feeling very badly about it.  Needless to say, I will NOT be having an epidural this time around.  If I need to have a c-section, I will ask to be put out completely, because I will never let someone poke my spine again.  

Since this happened, I have learned that the anesthesiologists finding the sweet spot is a freaking GUESS.  An average poke for an average woman might not work for her.  Go a teeny-tad deeper and they might draw spinal fluid.  Most anesthesiologists are able to tell when they do it.  Most anesthesiologists will tell the patient.  Others, like mine, would rather the mother deal with it and just pretend it didn't happen.  They can see the cerebral spinal fluid in the needle.  Apparently it's a brownish fluid, and it's unmistakable if it comes into the clear medicine.

Some women who have epidural headaches are able to heal without intervention.  The poke could be very small and will heal on an average of 1 week after the epidural.  If the symptoms are very severe, such as with me, then they will suggest a blood patch because the hole might be quite large.

To this day I will tell everyone and anyone my story, and if it helps even one person to choose a natural birth to avoid this type of error from happening to them, then it was worth my time to tell it.  Obviously, it won't happen to everyone, but I strongly believe it happens to more than 1%.  After speaking about my experience with other women, I have met many who have also had it, as well as people who know people.  The internet is chock full of examples of it happening as well.

I also know there are way worse things that can happen from epidurals (paralysis, etc.) but this "simple headache" is something I thought I could handle when being told the risks.  It's NOT a simple headache.  It's an injury, and it can be serious.  

Thanks for reading.