Portrait: Eliana
My name is Eliana, and I live in Providence, Rhode Island, with my husband and two daughters. Although I was diagnosed with a hemorrhagic stroke on October 7, 2022, at the age of 40, receiving this diagnosis and timely medical care was more of a challenge than you’d think.
About Eliana
My name is Eliana, and I live in Providence, Rhode Island with my husband and two daughters. Although I was diagnosed with a hemorrhagic stroke on October 7, 2022, at the age of 40, receiving this diagnosis and timely medical care was more of a challenge than you’d think.
Onset of symptoms
With the stress of having a newborn and healing from a C-section with life-threatening complications, it took six months for my husband and I to be intimate again. On our first go around, I ended up having a thunderclap headache (TCH). It went away within minutes and we agreed I should alert my doctor. At the time, I didn’t know that this type of severe headache has a 50% correlation with subarachnoid hemorrhage (SAH).
To my misfortune, the next day I had a bout of food poisoning, which sent me running to the bathroom. This was especially unfortunate because I happened to be constipated. From the exertion of straining on the toilet, I experienced what felt like a pipe burst in my head. The worst headache of my life ensued, with pounding that only a sledgehammer could produce—and apparently a brain hemorrhage, too.
Seeking treatment
Providence is a small city, yet there were enough emergencies that evening for an estimated 13-hour wait in the Emergency Department at the local hospital. My husband and I decided, against medical advice, to return home and schedule an appointment at my doctor’s office for the next morning, which would get me seen more quickly than spending the night in the ED. The ibuprofen I had taken dulled the pain, and I thought that I just had the worst migraine in the world... so did the doctor who treated me. I was prescribed migraine medication but continued to have breakthrough pain for several days.
My diagnosis: RCVS
Finally, after a CT scan was ordered, we discovered I had bleeds that were small, slow and controllable with medication. I did not need surgery but was monitored with more CT scans, MRIs and MRAs by a team of vascular neurologists every six hours for several days. I had both an intraparenchymal haemorrhage and “scattered” SAHs across my right lobe, due to Reversible Cerebral Vasoconstriction Syndrome. It was described to me as the perfect storm: I was postpartum, on a medication that causes vasoconstriction of the blood vessels and I had a history of migraines and TCH. My vascular neurologist thought the TCH triggered the SAHs, while the vasoconstriction caused the blood vessel to burst.
My recovery
I worked with physical, occupational and speech therapists to address the immediate deficits from the stroke. I couldn’t look at a screen for more than a few minutes without having a terrible headache from the eye strain. Since I’m a graphic designer and work on a computer all day, it was important to increase my screen time in order to return to work. I did ocular therapy to increase my stamina, vestibular therapy to work on dizziness and balance and hydrotherapy was a fun way to build up my strength. As I progressed, I also started the pelvic floor therapy that I needed, since I was postpartum. Since the stroke, I’ve also had significantly more anxiety and depression. I’m working with a psychiatrist and psychologist to support my mental health. I’m also seeing a neurologist to manage frequent migraines and exertion headaches. For months, I’ve tried various medications without much success. Since noise is a migraine trigger, I often wear earplugs around the house to dampen the energetic shrieks of my toddler and preschooler.
Documenting my recovery
I began documenting my recovery two weeks after my stroke. At first, I used the dictation tool on my phone, then started writing as I could tolerate more screen time. I’m currently working on a memoir about my healing journey and the impact of brain injury on creativity and motherhood. One of the hardest parts of recovery is being a parent while being a patient, much less of a patient parent! I miss out on time with my girls because I often need to rest from headaches that are triggered while caring for them. I’m learning to accept my “new normal” and limitations as a parent and in returning to work.
Do something creative every day.
Whether it’s painting, crafting, writing, or baking, I find that creative expression helps me measure my progress and keep perspective. It takes stamina and balance to bake a cheesecake or build a pillow fort, and although I couldn’t do these things in the months after my stroke, I slowly built up to them. The more I heal, the more I create, and the more I create, the faster I heal!
Advice and raising awareness
Be patient with yourself and celebrate your daily victories. Get as much help as you can afford and accept all help from family, friends, and your community. Although my husband has been an amazing support and absolute champion when it comes to caring for our girls, we’ve also had a lot of hired help.
A health disaster can quickly turn into a financial one from the pay reduction that comes with going on disability or not being able to work. For people who haven’t encountered the US disability system, I would recommend consulting a specialist since the documentation can be complex, especially if you need to apply for long-term disability. We had prior experience with applying due to a concussion that I had a few years ago, so we knew how to navigate it.
If you have a TCH, or the worst headache of your life, you must seek immediate medical attention. It is more common than you’d think for strokes to happen from the exertion of sitting on the toilet or sex. Most people would understandably be a little embarrassed, and it’s for this reason that doctors believe there are fewer strokes reported and treated because many who are impacted do not come forward with their symptoms. I want to help shine a light on this concern, because it does happen. Be honest with your doctor, ask questions, and eat plenty of fiber!