Post Stroke Nerve Pain and the Bumpy Road to Survival

We are a month shy of the three year mark of RJ surviving a massive stroke that we are told took out 40% of his right frontal lobe.  He has left side deficits, cognitive deficiencies and the most incredible nerve pain.  Therefore, I have read, researched, talked, listened, prayed and tried my hardest to take the best care of him possible.  He is well taken care of, even he would attest to that fact.  But, we haven’t found a single viable answer to relief of his post stroke nerve pain.  Trust me, we have tried and are still trying some things too.  We won’t get into all of that this time.

Understanding His Post Stroke Nerve Pain

I try to understand his pain.  I ask a lot of questions, probably too many for his liking.  Questions like “your eyes seem more clear and attentive, do you feel more focused?”  To which I get a response like “you shouldn’t say that!  I can’t ever focus.”  I never know what  the right thing to say or if I should just say nothing at all.

A Storm is Coming, Nerve Pain Ramps Up

I have learned the precursors to an oncoming storm.  Tell-tale signs like when he starts blinking a lot.  The nerves on the left side of his face start ramping up with pain and a cascade of things happen like there is a script to follow.  The left eye and mouth droop.  Breathing becomes louder, faster.  Responses are delayed.  He will turn his head to me and I see his eyes aren’t tracking at the same pace.  The pain usually causes an urge to use the bathroom. His leg pain spreads all the way up into his bladder and stomach.  Walking to the bathroom intensifies his discomfort. The worst of it comes when he tries to urinate.  At that point, we are in a full fledge, relentless storm.  Again, I am asking questions: “what do you need?,” “What can I do?,” “do you need this or that?” 

Some days, the storm includes or maybe even starts with sadness.  He gets up feeling like he did the day before. Specifically, facing the same mundane existence and the same misery as he did yesterday is taxing.  Today he asked me how long he had been like this.  That scared me. I have begun to wonder if dementia is part of his existence.  Usually he is asking specifically how long it has been since he stopped being able to do more things.  This was different. His question was how long it has been since he was more clear and more mobile.  Incredibly, that day is very clear to both of us.  It was July 13, 2022.

Seeking Neurological Care for Nerve Pain After Stroke

There are multiple reasons we remember that day.  Several of those reasons infuriate both of us.  Let’s go back to June 2022 when he had his first visit with a neurologist since he was in the hospital in September of 2021.  Given that this neurologist came highly recommended, we were excited to be able to get an appointment quickly. Only because another patient cancelled. 

Certainly, we left the appointment feeling like we had good information. Basically, the doctor prescribed some new meds designed to address post stroke nerve pain. We had a plan in place to move forward with neuro care aimed at getting him to the best existence he could have.  To that end, he doctor wanted to try two meds.  One of the meds was Gabapentin.  Obviously, knowing what we know now, we wish we had never taken that route.  The plan was to take a low dose daily and report back in three weeks.  As a result of taking the Gabapentin, side effects were almost instant and unbearable. Additionally, the post stroke nerve pain relief seemed non-existent.  We were told by the doctor that he suspected Gabapentin wasn’t going to help. Even so, he wanted to double the dose and see what happened. 

The Biggest Setback The Day the Nerve Pain Returned

What happened was catastrophic.  Basically, the morning he started the double dose, he was doing pretty good.  He went to PT and climbed the flights of stairs between the hospital floors multiple times.  Our plan for the day was to head to Florida. So, that afternoon, we left PT and headed south to celebrate our granddaughter’s first birthday. 

We often took this trip to our favorite beach town.  This time it was different.  By the time we got to our destination, he couldn’t walk.  His pain level was extreme.  Instead of enjoying the river and beach, his weekend was spent laying in bed.  The short time he was mobile, he was using his wheelchair.  No matter what we tried, we were unable to get the pain to subside. 

Upon our return home, I contacted the doctor to tell him what was going on.  His response was cold and aloof.  He had no further advice for us and had done all he could to help.  Seriously!!!  A renowned neurologist and that is the best he has: 2 prescriptions and done?!?  For weeks RJ struggled to get back to where he was.  PT, weening and detoxing from meds, making adjustments, fighting so hard to get back.  It wasn’t long before the physical therapist let us know that he didn’t believe we would see anymore improvement.  I would tell you how this conversation went, but I can’t.  There wasn’t a verbal conversation.  There was a text message.  A Dear John letter of sorts that ended with an invitation to continue to come to appointments if he desired to do so.

Don’t Blame the Therapist Helping Alleviate Post Stroke Pain

Let’s talk about his therapist a second before we crucify him.  He worked very hard to help RJ.  They made a lot of strides together.  He cared about us both and we cared about him.  The emotional toll this text took on RJ was intense.  He was distraught.  The one person we counted on so very much for over a year just gave up on him.  Not only that, but he also believed RJ couldn’t get any better.  There was no way under the sun that RJ was going to continue to go to appointments to work with someone who thought he couldn’t progress and have everyone in the room look upon him with pity.  The sadness turned to depression, for both of us.  How was I going to help him get through this?

Surviving Post Stroke and the Nerve Pain Together

I don’t really have an answer to that question.  A year later, we are still trying to get through it.  Hope is still alive.  We pray intensely for God to relieve the post stroke nerve pain, heal the body, heal the mind, renew his life.  We will never give up praying.  A ray of hope…we found him a new primary care NP to see.  She recommended more therapy and shared her knowledge of how the nerves heal and repair.  She ordered new physical therapy at a facility that has a neuro specialist and a hand specialist.  He is looking forward to getting started with that soon.  I am praying and hoping this will give him relief and restore some self worth.  I actually think he may be looking forward to trying!