My story began in late 2018. I was on oral birth control for a few weeks in October 2018 and stopped as it caused mental health symptoms. A short time later, I experienced sudden increases in heart rate every time I got up to move, and progressed to sudden shortness of breath and a feeling of dread.
I also had recurring bouts of bronchitis and asthma flares every few months without a known trigger. My doctors kept telling me it was because of my weight, and that I just needed to exercise more. I finally convinced my primary that something was wrong. She ran all sorts of tests, including a D-dimer test. She called me at 6 p.m. to tell me it came back positive, which means I have a blood clot somewhere.
She said that if I got an extreme headache or had any increase in symptoms, I should go immediately to the ER. The next day, I had a horrible headache and went straight to the ER. I had multiple bilateral pulmonary emboli without any evidence of DVTs. I was immediately admitted and treated.
Unfortunately, after I was discharged, they did the clotting disorders tests too soon, and they all came back falsely negative, so they took me off the blood thinners after eight months.
Within a few months, I started having extreme neurological symptoms, but my new primary decided I had a mood disorder and refused to do any other tests. I was also experiencing joint pain, fatigue, and extreme anxiety.
I finally had to change medical groups and start with a new primary in late 2020. She checked me for blood clotting disorders and found that I was positive for lupus anticoagulant, antibody that the immune mistakenly produces that can lead to blood clots. I started my treatment (warfarin), which caused daily headaches.
I saw a neurologist who found that I had a cerebral venous sinus thrombosis, or blood clot in my brain (non-occluding), which was causing intracranial hypertension. I began a journey of trying to control my headaches as well as all my other autoimmune symptoms that I now have.
This experience created a sense of fear and a lack of trust for most doctors. My lifestyle since the blood clot is completely different. I was active, doing 6-8 hours of gardening daily every weekend, and now I can barely do two hours and then am exhausted the next day.
If you know something is wrong with your body, don’t give up until you find someone who listens to you. Fight for yourself until you get an answer that makes sense. No one else is going to fight for you the way you will.
Resources
Birth Control
Testing for Clotting Disorders
Signs and Symptoms
