It’s been a bit over a week since my lumbar puncture. The first couple of days afterward I felt reasonably good. However I had a class on Saturday and Sunday last weekend that kept me on my feet for 8 hours each day. I pushed myself a little too hard getting through that class and ended up with a pretty nasty post-LP headache.
A spinal headache is a funny thing. It is triggered by a drop in CSF pressure – i.e. from fluid continuing to leak out of a lumbar puncture hole for a few days after the procedure. Lower CSF pressure means that the brain sags slightly and pulls on the connective tissue that attaches it to the skull. This connective tissue is pain sensitive and doesn’t like being stretched. Thus, a spinal headache hurts most when the spine is vertical and hurts almost not at all when the spine is horizontal. The standard treatment is bed rest for 1-2 days with lots of fluids and caffeine. This helps the spine heal and also minimizes the pain.
(It’s amusing that my spine couldn’t produce CSF for an audience but happily leaked lots of fluid when nobody was watching.)
So I stayed in bed for a couple of days. The enforced inactivity was a bit crazy-making but I was very happy that there was an easy way to make my head stop hurting. My head is better now, my back is healed and I’m pretty much able to resume normal life. I haven’t heard anything from my neurologist regarding test results yet. I think that no news is good news – it means nothing is urgent enough to warrant a phone call prior to my followup appointment.
The next time I see my neurologist, I’ll also redo the initial blood tests to see if the B12 shots are lowering my homocysteine and methylmalonic acid levels. If my LP shows no signs of MS and my blood work looks good, then I think the bulk of this saga is behind me. I’ll continue with maintenance B12 therapy for a while and will periodically go back for blood work but the crisis part will be over.
My neurological symptoms have largely healed which makes me luckier than a lot of people who progress this far with a B12 deficiency. A lot of people don’t catch it in time and end up with irreversible damage. There are still days when the numbness or electrical shocks flare up but I can usually alleviate them by getting enough sleep and exercising. As long as I continue taking lots of B12 and my body continues to use it properly I should not experience any recurrence or worsening of my symptoms.
Also, the B12 shots have greatly improved my overall energy level. I struggled with unexplained fatigue for most of last year. At one point it was so bad I could not stay awake at work no matter how much I slept the past few nights. I chalked it up to job stress but in retrospect it was probably an early warning sign of my B12 deficiency. The moral of the story, I guess, is to take that sort of symptom seriously instead of chalking it up to something that is “just in the head”.
I am trying not to count the goose that lays the golden eggs before it hatches but I’m optimistic and excited that things seems to be drawing to a close. I feel better than I have in ages and I have a good chance of emerging with health intact. Compared to how this started – the scary rapid onset, the initial diagnosis of MS, not being able to use my hands very much or walk more than a few blocks at a time – I feel incredibly fortunate to be where I am today. And I am also grateful beyond words for my family and friends who held my hand through all of this.
More to come after my next appointment with my neurologist!
