If our original plans had gone as expected, we would be on a direct flight home instead of waiting for a taxi outside of John Radcliffe Hospital in Oxford, England. Our “vacation” had been extended a week to ensure that I was fit enough to be on an eleven hour flight. I remember the strong scent of exhaust in the chilly air, a blush colored horizon through bare trees and strains of a familiar Beatles’ tune coming from the hospital lobby while I stood there, glad I wasn’t on that flight. I was exhausted and more than a little disoriented; at times I remember feeling as if I was watching myself from another place, detached from current reality. It wasn’t a bad feeling, but more, a sort of buffered effect. A cloaking device.
The ride to the guest house on the outskirts of Oxford was brief. As the taxi parked, I looked across the small courtyard which separated the quaint brick building from a busy street and decided it would be fine to transition there as long as the bed was comfortable. All I needed was sleep.
My husband led me up a set of dimly lit narrow stairs and into a tiny room furnished with twin beds, one against each wall. I pulled back the covers on the bed beneath the window, and with my clothes still on, lay down and slept minus distractions, for hours. No tea cart jangling to and fro, no hushed conversations in the hallway. No electronic beeping, blood pressure monitoring, urine measuring—nothing. My husband became my meds monitor, administering 60 mg of Nimodipine four times daily to decrease problems related to the small subarachnoid hemorrhage I’d had by relaxing the vessels in my brain. As well, 1000 mg of Paracetamol, better known as Tylenol, was administered four times a day for the persistent headache. He monitored how much water I drank as well, encouraging, always encouraging.
He brought me dinner from a pub down the street that night after waiting for me to wake, and I ate it all, glad to finally enjoy food with flavor. After a while, he slept, just as exhausted as I was. I lay awake in the dark, my mind vacillating between gauzy blankness, controlled anxiety, and overwhelming grief. I didn’t completely understand the grief and tended to distract myself when it surfaced, the feelings associated with it unsettling. I was alive, wasn’t I? I could walk, and talk, and I could think rationally. I could see! I knew my light sensitive eyes needed rest in general and prolonged time away from a bright screen in particular, but at some point, I reached for my phone to resume the search for information on anything related to my condition. It was as if searching for understanding would bring me back to a more normal reality, but I didn’t realize it at the time. I simply complied with the urge.
I combed through sites like: The National Center for Biotechnology Information, Springer Link, which houses millions of scientific documents, and especially Up To Date. I discovered sources with information about the fact that strokes affect women more than men and are the third leading cause of death. I became more aware that there are different kinds of strokes and that not all of them affect us in the same way. I acknowledged that I had had a stroke, but had no serious, lasting side effects. I wondered about those who weren’t as fortunate as I. I also wondered whether the thunderclap headache had caused the hemorrhage or whether it was the other way around. Not everyone who is diagnosed with Reversible Cerebral Vasoconstriction Syndrome has a subarachnoid hemorrhage. My need to sort it out kept me awake each night which compounded the need for sleep.
We knew I needed to be up and about, moving. Laying in a hospital bed for a week hadn’t done anything for my strength. It wasn’t so much that I needed to push myself, but we wanted to know that I was truly capable. If I couldn’t handle a pleasant walk, how would I know whether I could tolerate a long flight? The doctors had expressed their concern about it, and I had run the potential scene through my mind several times. All I had to do was think about the last thunderclap headache I’d experienced three days earlier and let my imagination take it away.
Thunderclap headaches are uncommon but they can warn of potentially life-threatening conditions — usually having to do with bleeding in and around the brain. Seek emergency medical attention for a thunderclap headache. —Mayo Clinic
I knew the potential for several more headaches over the next few weeks was high. I wasn’t afraid to get on a flight, but I didn’t want to be on the flight and have a medical emergency. I wanted to be able to get to a hospital for treatment.
So we walked. We walked the next afternoon, meandering around the town, through lots, along narrow passageways, across a large park. We stopped for tea and enjoyed a sweet, then walked along the busy main street, all lit up for the holidays. Eventually, we ate dinner before tracing our steps back to the guest house. Reruns of Foyle’s War shared space with our discussion of staying somewhere more comfortable for the week ahead. Somewhere with a place to sit other than the side of a bed.
Unfortunately, there were no hotel rooms available in Oxford to make a move worth our effort. We were forced to look at nearby villages, gauging the distance should I need to return to the hospital. The idea of less hustle bustle was appealing, as was the idea of recapturing even the smallest bit of the idea of a vacation. After handling all of the insurance issues and a daily 4-hour round trip commute to London for a week, my husband was in need of serious rest. He needed a decent internet connection so he could make up the time at the office he was missing, and to stay in touch with our insurance company, the hospital, and British Airways. In order to board that flight in another week, I’d need a letter from the consulting neurologist releasing me to fly, or there would be no booking.
I offered to stay behind. I was comfortable. I imagined that this experience was part of my ongoing dream to live in England. My husband quipped that at least we’d been able to sample the healthcare system. Indeed I had, and I came away from the experience with no complaints. Staying behind would not pose a single problem to me, but it would cause difficulties for him. Life and its responsibilities flow forward whether we’re stuck in its stream or not. People who care about us tend to feel better when we’re home.
Woodstock is a beautiful village filled with honey-colored stone and brick buildings and very near to Blenheim Palace, the birthplace of Sir Winston Churchill. We’d visited Blenheim on an earlier trip but didn’t have time to see Woodstock, so it seemed apropos that we’d have this chance. My husband splurged on a suite because we’d have room to take it easy. Plus, we discovered that unlike medical costs in the U.S., my experience would leave us with only $2,000 expenses out of pocket. In fact, the entire bill was just under £5,000. We were stunned knowing that at home, the total would easily have been nearly twenty times that amount. Yes, there was much to be thankful for at this point, so the recommendation given to me by one doctor to “stay calm” was made much easier.
I slept between ten and twelve hours each day. When I wasn’t sleeping, I’d nap in the sitting room after a walk around the village, or through the expansive grounds of Blenheim. Sometimes my husband brought food in, other times we’d walk to a restaurant, never more than five minutes away. All the while, we waited for that letter so we could rebook our flight home.
We also watched the weather. Although we know that it’s much colder in England than what we’re accustomed to in winter, we never expected that it would snow while we were there. Yet reports of an icy storm were persistent. The sky took on a steely cast, and we were thankful we packed enough layers to keep us comfortable. We bundled up and ventured out just to make sure I was getting exercise each day. We tried to get back whatever semblance of normal we could. I encouraged my husband to see a football match and thanks to some very kind people whom we’re connected to as relatives of relatives, he was able to do just that. They also drove a good distance to Oxford one evening to keep him company and provide a much needed diversion from the hospital. While he was away at the football match, I went in and out of the shops in the village, took photos, and thought about what it would be like to live there. It was far easier to think about than what the alternative might have been, and could still be, although no one was saying any of that out loud.
Large series of patients with confirmed RCVS (Reversible Cerebral Vasoconstriction Syndrome) have shown that up to 75% present with headache as the only symptom, but the condition can be associated with fluctuating focal neurological deficits and sometimes seizures. 126.96.36.199 Acute headache attributed to reversible cerebral vasoconstriction syndrome may be a warning symptom preceding haemorrhagic or ischaemic stroke.—The International Classification of Headache Disorders
We learned the letter British Airways required was ready for pick up at the hospital. Additionally, CDs of my various brain scans were to be provided so I could forward them to a neurologist back home. With that good information, we were able to book our flight. It must be noted that British Airways was extremely accommodating from the beginning. Upon learning of our need to cancel our original flight, we were told that they would book a new one, no penalties or additional costs, as soon as we let them know I could fly and produce the requested letter. They delivered. All we needed to do was get to the airport.
Very early in the morning, two days before our departure, I pulled aside the sheer curtain over the window next to the bed. It was snowing. The rooftops reflected the early light of day, and sparkled in the newly fallen snow. We had planned to return to Oxford that day by bus to pick up the necessary documents, then take our time on a walk around the city. We’d missed so much of what we originally planned, it seemed right to try to make up for some of it. But the snow! Part of me wanted to stay in the room and enjoy it. But we boarded a bus, and off to Oxford we went.
It was strange returning to the hospital and seeing the ward from a different perspective. As much as I wouldn’t want to repeat the experience, I had only good feelings remaining from the care I received, and the attention I was given. I will never forget that. With necessary items procured, we took a taxi into central Oxford to enjoy the day sightseeing at an exaggerated leisurely pace. Before we boarded the bus back to Woodstock, the temperatures had fallen dramatically.
On the day of our departure, snow had begun to fall again. Instead of worrying whether we would make it to Heathrow for our flight, I ventured outside and into the village square. No one was awake yet. Snow fell softly, already accumulating in inches. Birds chirped happily from a vine climbing against a stone wall. Street lamps glowed warmly in the still dark sky. I stood for a long while to appreciate the beauty of it, happy to enjoy it. When you’ve never lived in a place where it snows, it’s magical.
The magic was short lived. In advance, we had hired a car to take us to Heathrow, but were concerned about how much snow was falling. When my husband called the transport company to confirm a car would be arriving, he was told we were lucky to have made a reservation. One driver had ended up stranded, and so another was dispatched to pick us up. We’d have adventure right up to the end, it seemed. But the odd cloaking device still worked its charms and I knew we would be fine. Getting upset wouldn’t change our circumstances. It rarely does.
It took three hours to get to Heathrow that morning. Normally, the drive would have taken an hour. We would have arrived with plenty of time to get our wits about us before our flight, and perhaps enjoy a cup of coffee or tea. However, Oxfordshire seems to respond to snow much like we respond to rain. Traffic plodded along at speeds well below limits, often in single file lines. We observed more than one car veer off the highway and into a ditch, or stuck in the snow on a side road. When we learned that a major motorway had been completely shut down, it forced us to take a long detour on much smaller roads along with everyone else. Traffic stood still for long periods of time and we wondered aloud whether we would make it in time for our flight. I had begun to think that we were far from being the only people who would have trouble making it to the airport. The bigger question about whether the flight would be cancelled loomed. Whether we would find ourselves once again, looking for lodging near the airport until we could catch yet another flight. I know we were thinking the same thing, but neither of us said it aloud. Instead, my husband engaged the driver with questions about where he was originally from and how long he had lived in England. In much the same way I had listened to him talk to the woman on the train a week earlier, I listened now, thankful I could do so without dealing with excruciating pain and fear. I watched the snowy banks flash past as we finally made our way along the alternative motorway. I listened and thought about moving to England myself in the not too distant future; I was convinced it had a very real hold on me in more than a figurative way. We made it to Heathrow with time to spare, thanked our driver, and tipped him generously. Our journey had resembled Mr. Toad’s wild ride, but we made it as calm a ride as could be expected given the circumstances.
The three months it commonly takes for the characteristics that define RCVS to completely fade have passed. An MRA two months ago showed no signs of constricted arteries in my brain. My daily headaches have decreased to the point I either don’t notice them, or are so mild, I tolerate them. My eyes’ extreme sensitivity to light is still apparent, but sunglasses, a hat, or simply staying inside helps. My ears have a persistent ringing whether it’s quiet or not, but that doesn’t bother me, either. When my pulse elevates after I’ve climbed the stairs or have been working in the garden, I automatically pay attention. I feel it in my chest where it belongs, willing it to stay there, and not in my head. I breathe in, and breathe out until it slows. Until I’m sure anxiety is in its place. Until I can continue with whatever it was I was doing. I will never forget.
My recommended follow up to the neurologist at home was a long time coming and seemed almost trivial by the time it arrived. I could belabor the details of this in great detail, and not pleasantly, but reliving that aspect of my experience would be counterproductive. I was told that everything looked normal, but didn’t receive verification that it could never happen again. This surprised me because I’d read in more than one place that it isn’t recurring. No mention was made that I would benefit from losing weight, but that I should drink less wine. That I should get a blood pressure cuff and take my blood pressure each day. That I should take Verapamil ER each day. I was not happy with any of this. The doctors in Oxford had prescribed enough Nimodopine to last a month with directions to reduce the dose gradually and I had complied without fault. Clearly, they saw no need for me to continue on any medication. Why would I need to resume? The night before I experienced the first thunderclap, I’d had a glass and a half of wine. We’d just been on an extremely long flight. I had awakened very early that morning due to the huge time change and drank several cups of strong tea. Everything was fine until I ran for that train. Nothing before that had ever given me the idea that I shouldn’t. I’d never used illicit drugs, never smoked, didn’t use nasal sprays, wasn’t on any kind of medication—I had been thoroughly questioned countless times about all of the known possible risk factors for RCVS. No one is sure what causes it. There has only been documentation about the details once it’s been reported. Exertion, or in my case, running for a train, filled the bill.
Rebellious as always, I had the prescription for the Verapamil ER filled but left it on the kitchen counter for a week. In that time, I reduced my wine consumption to include drinking none at all, and ordered a blood pressure cuff. I begrudgingly decided that if after a couple of weeks, my blood pressure was as high as it had been in the neurologist’s office that day (a very atypical 140/90 implied anxiety over the appointment from my perspective), then I would comply. I have always been someone who hesitates to take medication when there are alternatives, and this occasion was no different.
Ultimately, it was a non issue. My average daily blood pressure has hovered around 118/79 on most days, whether I drink wine or not, which is more than appropriate for a woman my age.
What I have had to acknowledge recently, is that my positive attitude throughout my experience, although helpful at the time, has caught up with me. It makes me think of an overdue bill in need of payment. I struggle with bouts of sadness, and tears brought on by a poignant image, or special memory. At times there is a palpable sense of loss and longing. I give into it and when it passes, give my face a good wiping before moving along with my day. I find that when I’m in discussion about something that gets my emotions going, I tend to want to back away from it all together, the effort of talking about it more than I want to expend. “I just don’t care” is something I’ve said again and again. Think resignation more than a lack of compassion. I am one who cares. I don’t know how not to. But the cloaking device keeps me insulated most of the time. In some ways, I think it’s helping me focus my energies on what lies ahead in life and how to achieve that. I wouldn’t recommend taking this particular route in order to realize such a goal, but it’s the one I’ve been handed.
I’m planning on making the most of it. If ever I’m late for a train again, I’ll willingly wait for the next one.
I’ve got time and new perspective.
Further information on RCVS and its relationship to thunderclap headaches and subarachnoid hemorrhage (stroke):
There is one headache that patients never attempt to explain away though. It it brutal. This headache declares its presence in such a severe, attention-grabbing, dramatic way that it will not allow itself to be ignored by the person suffering from it.It is known as the thunderclap headache.—“Reversible Cerebral Vasoconstriction Syndrome (RCVS): When a headache is not ‘just a headache.'” The Stroke Blog
The direct cause of the symptoms is believed to be either constriction or dilation of blood vessels in the brain. The pathogenesis is not known definitively, and the condition is likely to result from multiple different disease processes. Up to two-thirds of RCVS cases are associated with an underlying condition or exposure, particularly vasoactive or recreational drug use, complications of pregnancy (eclampsia and pre-eclampsia), and the adjustment period following childbirth called puerperium. Vasoactive drug use is found in about 50% of cases. Implicated drugs include selective serotonin reuptake inhibitors, weight-loss pills such as Hydroxycut, alpha-sympathomimetic decongestants, acute migraine medications, pseudoephedrine, epinephrine, cocaine, and cannabis, among many others. It sometimes follows blood transfusions, certain surgical procedures, swimming, bathing, high altitude experiences, sexual activity, exercise, or coughing.—Wikipedia
Some possible external factors related to RCVS may include the use of prescription, over the counter, or illegal drugs that can cause constriction of the arteries. RCVS also may be linked to internal factors such as tumors, which secrete substances that, in turn, constrict blood vessels.
Prescription medications associated with RCVS include the following:
- Antidepressants: Selective serotonin reuptake inhibitors (SSRIs) such as Prozac®, Paxil®, and Zoloft®
- Medications to treat migraines: triptans (Imitrex®, Maxalt®), isometheptine (Amidrine®, Midrin®), and ergotamines (Migergot®, Ergomar®, Cafergot®)
- Immunosuppressants: cyclophosphamide (Cytoxan®) and tacrolimus (FK-506®)
- Drugs to prevent bleeding after childbirth
- Anti-Parkinson’s medications: bromocriptine and lisuride (Dopergin®, Proclacam®,and Revanil®)
Common over-the-counter drugs and supplements that can cause constriction of cerebral arteries include the following:
- Nasal decongestants (pseudoephedrine, ephedrine, phenylpropanolamine)
- Nicotine patches
- Caffeine-containing energy drinks
Illegal drugs associated with RCVS are:
- Amphetamine derivatives
- Lysergic acid diethylamide (LSD)