I never intended to take a break from writing about my recovery but alas the events of the last three months of 2014, conspired to render me mute. I hope that anyone wondering as to my progress assumed I was distracted by a return to full health and was busy living my life. This was, unfortunately, not the case. I have no desire to document everything that befell me in the last three months of 2014 but would like to provide an accounting of that time; it is only reasonable to have an accurate record to reflect upon. Who am I kidding – it’s for catharsis!
So dear friends, readers and other neglected persons let me share with you the events that left me unable to rally a defense.
My last post in October 2014, (five months post-op) was about the early signs of full recovery and I genuinely felt on the threshold of improved quality of life, despite continuing painful headaches and funny (new) episodes of dizziness and passing out. To the latter, my GP assigned blame to Morphine, dropping my blood pressure too low, so that whenever I stood up I became faint. Once these episodes reached the point of me having blackouts several times a day and having to lie on the kitchen floor until my vision cleared and head stopped spinning, the GP agreed to cease the Morphine. He put me onto an increased dose of Tramadol, adding a slow release version morning and night in addition to fast acting four times a day.
My physical recovery had been continuing despite the ‘episodes’, albeit slower than it should have. Mid October I even baby-sat a friend’s three-year-old boy for half a day. Despite a very active few hours, I felt great and was really pleased at how well I’d managed (as well as said boy child surviving intact). Finger painting, decorating a robot helmet, being chased around the house by child wearing robot helmet, reading; all this was within my capabilities and it was marvelous.
The next day however, in the kitchen at home, I stood up after retrieving something from the fridge and my head spun, the world began to disappear as darkness clouded my vision and like so many unfortunate women in the movies, I swooned. I felt control of my limbs flee and wondered, as I begun to slide to the floor, if I could protect my head from any impact. Jason, also in the kitchen saw that I was not well and grabbed me around the waist, supporting me as my strength vanished. Each blink of my eyes showed a darkening room as I sagged, a dead weight in his arms. Blackness followed.
After only minutes, blurry vision was restored and Jason half dragged, half directed me to the lounge. I lay my face gratefully against the cushions, relaxing knowing it was safe now to succumb. Lying there, weakened, I became aware that my left arm was behaving oddly; bent forcefully at the elbow, tucked against my chest and fingers curled tightly. When it began to twitch in spasm, I felt a flicker of fear at the familiarity of these symptoms – exactly like when I had a stroke in 2007.
As quickly as the fear rose, I stamped my reaction down, seeing no good purpose in it. I did however mention the symptoms to Jason and we concluded it was just a response to the funny ‘episode’ I’d just had. We both know that anything that challenges me physically can see a return of the weakness on my left side. Later when I began moving about, I was disappointed to find I also had developed a pronounced limp, all the joints of my leg were locked up and my hip swung forward in an uncontrolled bowing movement. But again, we put it down to fatigue and went about our day.
We have talked about that day since and realised that the stroke of 2007, changed so much for us both, we have a new sense of ‘normal’. With brain injury so many things can impact brain and body functioning, a late night, too much noise, a head cold, over exercising; all this and so much more can strip me of my strength, coordination and endurance. A recurrence of weakness and fatigue is the new normal.
When the deficits had not resolved after a few days, I saw my doctor who upon physical assessment confirmed that I was presenting with hemiparesis (weakness or paralysis affecting one side of the body) and that my hip flexor in particular, was not switching on. His initial thoughts were that I had experienced a severe loss of blood pressure and had extended that by not fainting (laying down immediately) and may have triggered a vasospasm* in my brain. In short – I may have had another stroke.
He promptly sent me to the hospital Emergency Department (ED) with a letter requesting an urgent MRI. Alice Springs Hospital had only just installed an MRI machine in the previous six months and rumor had it that the waiting list was already quite long.
I waited three hours to be seen but once the doctors examined me and took my history, there was an increasing sense of urgency on their behalf. They contacted the Neurosurgery Unit at the Royal Adelaide Hospital who asked them to perform a CT Angiogram to ensure the aneurysm clip installed in May was still in place and, there were no brain bleeds. This was done and thankfully all was clear. I was however admitted to hospital as the doctors felt I still needed the MRI and access to rehabilitation services.
The following morning, as Jason arrived with a change of clothes for me, two staff appeared at the end of my bed and following a rushed introduction, my impression was that one was a doctor, the other a student doctor; the Saturday morning ‘B team’, a friend would later call them. They examined me, in a perfunctory manner, noted the CT was clear and advised I would not be having an MRI, as they felt the CT was sufficient. Granted, I was a tad sleep deprived but I recall thinking how only an MRI would clearly show the deep structures of the brain (such as) where my first stroke occured but okay.
They then inquired as to my walking stability and I informed them nothing had changed overnight. They had me walk for them; my glamorous hospital gown trailing upon the ground, comically oversized. I took four wobbly, slow steps and they stopped me; four steps, I kid you not. That was the extent of their walking and stability ‘assessment’. For goodness sake, they couldn’t even see my legs in order to assess functioning. I wobbled back to the bed as the doctor announced in a dismissive tone, “Oh well, you don’t really need rehab do you, I mean you’ve had a stroke before so you know what to do”. “Yes, get the hell out of this hospital”, I thought as my eyebrows climbed their way towards my hairline.
I confirmed they were saying there would be no MRI or rehab support (the reasons I was admitted) and they left (without waiting to see if I would stay or go). My decision was a quick one; I was already feeling weaker from a day sitting around the hospital instead of doing as much as possible for myself at home. If there was to be no support or further tests, there was zero point in staying.
I returned home no better and without answers.
My physical weakness worsened and the rate of the episodes of passing out increased dramatically. This state of affairs continued for some time and to be honest, I struggled to maintain my optimism, finding the idea of further brain problems emotional paralysing. Living with worsening episodes, we nicknamed ‘brown-outs’, slipping into near unconsciousness up to four times a day, with the only explanation being “something was going on in my brain” (as my GP put it). I became so unwell I stopped being able to do almost anything.
This was a difficult period for us and we largely kept things to ourselves as we simply had no idea what we were facing. My mind was filled with terror at the prospect of new brain damage or neurological deficits and my world contracted until I had to schedule my entire day around the recurring episodes. My mental health at the time deteriorated, and my physical recovery quickly went with it.
Then I had an episode in public and things escalated quickly. Whilst getting groceries with Jason at ‘Woolies’ one afternoon, I began to feel unwell, sounds and colours distorted, becoming harsher, crashing upon my mind like storm churned waves; thinking became difficult as dimness crept slowly into my peripheral vision. Feeling as though my mind was shutting down, I didn’t reach for Jason or utter a word. Backing slowly, groping blindly for purchase, I bumped into the shelves of the cleaning products isle and with a sense of self-protection used them to ease my body to the floor.
I lost touch with time and in the haze that was now my mind’s workings, there were no thoughts of embarrassment or concern, I merely waited the event out, some primal part of me knowing it would pass soon and I was safe, and that that was the only thing that mattered.
Slowly, I returned to the world around me, to see Jason looking down at me, asking if I was okay? He helped me to my feet and shepherded me to the front of the store. We made our way to the small food court and I rested on a bench seat as Jason got me some water. As my head cleared, I tried to reach for the water bottle on the table directly in front of me. Nothing happened. My arms and top half of my body wouldn’t move, I felt as though I was made of molded plastic with no moving parts. I tried and failed to move my arm again and felt a flash of terror. ‘I’m having a stroke’, I thought, the words loud in my mind. “I can’t move my arms,” I told Jason. He looked at me seemingly confused. Then I said words no one has ever heard me say and they lit a fire under him, sending him into immediate action – “I think I need to go to hospital”.
Jason was on his feet and at my side instantly helping me to lie down. As he turned to get his phone, a police officer walked by and I heard Jason, his voice oddly strained saying, “My wife may be having a stroke, can you call an ambulance?” The officer complied and only a short time later one arrived and I was rushed into a high dependency bed in the Emergency Department. By the time I arrived, I could move my arms and body and was feeling okay but had a ‘brown out’ episode in front of the doctor a short while later. It seemed that whatever was wrong with me was escalating.
This time when admitted to the hospital, I was taken seriously and kept in for four days whilst the Alice Springs medical team liaised closely with the Neurology Department at the Royal Adelaide Hospital and eventually figured out what was happening to me – it was a severe drug interaction.
My doctor had put me onto a new pain medication (Tramadol), both an acute (every 4 hour dose) and a longer acting slow release dose. Initially, I was taking long-acting Morphine with Tramadol throughout the day, but my doctor (not realising a drug interaction was occurring) thought the morphine was causing my blood pressure to drop too low (causing my first few episodes). Thus he changed the morphine to the slow-release Tramadol and this is when I really started to have problems. Tramadol, when combined with a particular nerve pain medication (I have been on for years for a spinal nerve injury) can cause Serotonin Toxicity. Serotonin toxicity or syndrome severely affects muscle function, disrupts signals from the brain to the rest of the body, causes seizures, serious mental health imbalances and the nervous system ceases to work properly. If left untreated it can lead to death. This interaction was responsible for all my symptoms, including the hemiparesis. These medications should not be prescribed together.
After reviewing my medication log and diary of events, we could see a correlation between a worsening of my symptoms with every increase or change in this medication. The cure – stop taking it but gradually, as the serotonin toxicity worsens with every change in medication dose, even a reduction.
The next month was dreadful as every time I dropped the dose, the side effects increased dramatically, leading to more episodes of dizziness and passing out and many other unpleasant side effects. Each time I dropped the dose, I would have one to two days whereby I lost control of my body and spent most of the time resting on the couch, feeling horrible whilst knowing that ultimately this was the path to regaining my health and sanity. My mood throughout the Serotonin Toxicity was nothing short of feral and my cravings for chocolate took on an obsessive trend. I joked (later) that for Jason, coming home from work was akin to opening the door and being greeted by a large and mightily unhappy Rottweiler dog. His only path to safety lay in running into the lounge, throwing a bag of Cherry Ripes at me and running to the other end of the house until Rottweiler Veraina slipped into a chocolate induced, friendlier mood.
I am happy to say that we successfully navigated this treacherous period and I begun to recover. The doctors at the hospital were pleased with my commitment to reducing the drug dose (as many people stop reducing once their symptoms worsen). By Christmas I was only having the occasional dizzy spell with no full-blown episodes and I begun to be able to do more. All that said though, it would take another two months before I felt recovered.
It took me a long time to regain my post operative recovery momentum after such a dreadful complication and I was angry at my GP for quite some time. The only good to have come of the whole mess, is that he now knows a lot more about checking possible interactions to the medications he prescribes. I just wish I hadn’t had to be the ‘crash-test’ dummy!
*Cerebral vasospasm is narrowing of a cerebral blood vessel and causes reduced blood flow, which may lead to delayed ischemic deficit and cerebral infarction if left untreated.