After a diagnosis of Dural Venous Sinus Thrombosis that led to the discovery of a stroke, Valerie would like to tell her story of navigating the long process of recovery that followed, to support other brain injury survivors.
A little bit about Valerie
I was diagnosed with Dural Venous Sinus Thrombosis on June 17 2023 and soon after that, through imaging, they found evidence of an “old stroke.” I’m pretty sure I know when that happened. I suffered a bilateral stroke to the thalamus and a CVA (cerebral vascular accident) to the basal ganglia in my brain.
I say I am pretty sure about the first stroke because I distinctly remember this headache I got that was like nothing I had ever experienced before.
It crept up the back of my head. It felt deep inside my head and there was a lot of pressure. My neck got stiff and I couldn’t turn my head at all. My vision was scrambled and I could not really see. I was disoriented and throwing up. I had to wait for it to pass because I couldn’t use my phone or even think. I went to urgent care the next day and described what had happened.
They told me it was a migraine. I was like, “that was no migraine.”
To be fair to the urgent care, I am only 37 years old. They sent me home and over the next 10 months my health really declined with weakness in my lower legs, trouble breathing, getting sick more often, and more intense, severe headaches. June 13 was the next bad one. This occurred 10 months later. It struck at work. Light and sound hurt, I felt disoriented and was vomiting, I felt pressure in the back of my head, and had a stiff neck. I tried migraine medicines, I went to sleep, and, at about 5 am, I woke up because something popped in my head. It felt like I got punched in the back of the head.
I went to urgent care as soon as it opened. I whispered everything to them, and they told me it was a migraine, gave me shots, and sent me home. I fell asleep. The headache did not go away. It lasted several more days. I don’t remember much of Friday of that week. On Saturday mornings I usually teach boxing and I didn’t show up to teach. Lucky for me, my boxing community is really tight and caring so they came looking for me. A friend with a key to my house found me in my house very confused. EMS was called and to the ER I went. It was later discovered that my stroke was caused by a combination birth control.
The symptoms I must navigate
The 3 most bothersome symptoms I have experienced as a result of the stroke are what my neurologist calls “brain pain,” which are aches and pains, burning and freezing, pins and needles and strange sensations I get. They really hurt, a lot. I have left-side neglect; my body forgot that left existed for a while. I would know the left was there and something was to my left and to move, but then my body would not. The fog, I describe it like being an astronaut in your own mind. This place you’ve been your whole life suddenly feels wholly unfamiliar and there is so much to learn about it, and it does not always feel like friendly, safe territory.
The people involved in my recovery
There are so many health specialists involved in your care when you have a stroke, it is hard to keep track of. I have a neurosurgeon, a psychiatrist, a neurologist, a primary care physician, a haematologist, an immunologist, and a mental health therapist. While I was in the hospital and as an outpatient, I had a physical therapist, an occupational therapist, a speech therapist, a vestibular therapist, a lot of nurses, and a hospitalist.
Sources of support are super important. My family and friends and my boxing community have been very supportive through all of this.
Things I enjoy doing
Before I had a stroke, I was a boxer and I intend to go back once I am off blood thinners and am able to. I enjoy weightlifting, though I have to keep it light right now. I like the rowing machine and am trying to get into jogging. I also like learning languages, so I’ve been learning Spanish and ASL with some tutors online.
The highs and lows of recovery
The high for me is the time I get to spend with my family and friends. I really appreciate it. I think that time has been really beneficial in keeping me going and pushing through.
The lows for me have been pretty low. In a lot of ways, I was really failed by the medical system because my stroke was preventable. I was put on a birth control I should not have been on. My gynecologist at the time ignored my history of migraine with aura and put me on it. After a year on it, I reported to her an increase in frequency and severity of migraines and she told me not to worry about it. I had that first strange headache and tried to get help and was told it was just a migraine. I had that second strange headache and was told it was just a migraine. I am really lucky to be alive. Because of my age, the ER assumed I was on drugs and treated me poorly. When I was in the rehab hospital, they rushed me through in under a week and I had a case manager who did not manage or help me make appointments.
I am lucky that I happen to be a Licensed Clinical Social Worker, and know several social workers, as this allowed me to reach out and get help arranging resources. My follow-up appointments wound up being months after my hospital stay, some of which I am still waiting on. In fact, I just learned last week I lost a lot of peripheral vision in one of my eyes. I imagine that if rehab hospital was not trying to rush me out, they might have caught that. The outpatient rehab sadly had to close down as I was finishing up my last appointments. I think what’s missing in the recovery journey is care. A lot of facilities put profits over care.
My advice to other survivors
My advice would be, there are no limits to asking for help. You are not a burden. Never had therapy before? Try it out. Feeling super anxious or down? Don’t be afraid to give an anti-depressant a shot. You just had a near-death experience and then someone poked around at your brain. That is wild.
My quote for navigating recovery has been my quote for navigating all things that terrify me and that is “no brains, no headache.” Don’t think, just do.