It Happened to Me: Blood Clots and Birth Control

10:53 PM chronicmigraineellie 4 Comments

When I started oral contraceptives three years ago to manage my menstrual migraines, I knew that there was a small chance that because I had migraines with aura I could possibly get a blood clot. I figured that the benefit was worth the risk, as one in 3,000 women per year who take birth control pills will develop a blood clot (stoptheclot.org). Little did I know, however, that I would be the one woman out of 3,000 who developed a clot.
Last Thursday, February 4th, I was sitting in class when I noticed that I was having localized pain in my upper right arm. I looked down, and my hand was starting to swell and the veins in my hand were very blue and I could see them very clearly. I immediately called my parents, and after a while I decided to go to the emergency room. I am going to put in a disclaimer here that I am in no way going after the hospital that treated me, but instead am telling you all my experience in order for you or your friends and family to get the best care that you need.
Thursday was my first ER visit for my suspected blood clot. I waited for two hours before I was seen by the doctor, and by then the pain had moved from my arm to my hand and started swelling around my thumb. The pain was nothing like I had ever felt before. It felt like someone had put icy hot inside of my hard, with a throbbing, sharp pain mixed with numbness. I explained to the doctor that I was at risk for blood clots, the medications that I was on, and my chronic condition. He proceeded to dismiss me, telling me that I had slept on my arm wrong but he would do an ultrasound to "make me feel better." An hour and a half later when the ultrasound tech came, the swelling in my hand had gone down. I asked to see the doctor, and another forty-five minutes later he came in and told me that I had peripheral neuropathy (damage to my peripheral nerves which is quite rare is otherwise healthy 19 year old girls) and to go home. No blood tests or other tests were done.
Fast forward through the weekend, where my hand was still swollen and blue, I started feeling the pain again this time in my hand on Sunday night at about 12:30 am. I called an ambulance and was quickly taken to the ER. Due to the visit on Thursday, the ER doctor initially told me that I would have to wait 5 hours for the ultrasound tech to come in and that I was free to go. This is where the important part of my story comes in. I knew that something was wrong, my hand shouldn't be swelling and turning blue, and I wanted them to do something about it instead of dismissing me as a hysterical young girl. I was actually quite calm during the pain, and it helped that one of my good friends was in the ER with me. I was not leaving until they figured out what was wrong with me.
After getting an x-ray, I consulted another doctor who then convinced the ER doctor to do a CT Angiogram with dye, which would actually show more of the vasculature than the ultrasound would. After the scan, they started taking labs. About an hour and a half later, the ER doctor came into my room to give me my results. She turned to me and said, "I'm really impressed at how you advocated for yourself. You were right, you have a blood clot in your brachial vein on your upper right extremity." I had deep vein thrombosis in my arm, a small clot which showed up on the CT scan.
At this point, I started crying. I was so relieved to hear that my pain was validated, that I was going to be okay, and that someone had actually listened to me and found out what was wrong.
They admitted me, gave me a shot of Lovenox, a blood thinner (which made an awesome purple bruise on my stomach) and moved me to observation. I spent the night and most of the day in observation. I had two amazing family practice doctors and a hematologist who saw me, and we discussed treatment and what this means for my future.
Basically, I can never be on estrogen hormones ever again for the rest of my life. I was a little worried because I have both menstrual and non-menstrual migraines, and the birth control was controlling my menstrual migraines. In about a week and a half, I will start a progesterone pill, but I am worried that the drop in hormones will cause a spike in migraines. I'll let you all know how that works out.
In terms of the clot, I was started on Xarelta, which I will be on for 3-6 months.I have to avoid contact sports and I have a higher chance of bruising and bleeding, but I can live with that. I got extremely lucky; the clot was not in an artery so there wasn't a chance of it moving to my lungs, heart or brain. However, I got extremely lucky. I am so thankful because my clot could have been so much worse, and the complications that could have arisen could have been fatal. If I had not known that I was at risk, I may have been sent home again from the ER because I did not have the physical symptoms that were "typical" with blood clots.
After experiencing this, I have two main important points. The first, know your risk factors. Know what the side effects of your medications are, even if it only affects 1% of the people who take that medicine. I was that 1 in 3,000. I never thought I would be, but I was. I knew what I was at risk of, and because of that I was able to get treatment. Being knowledgable about your condition is key to helping yourself become a better advocate.
Secondly, this whole event made me realize that I want to help people with invisible and chronic illnesses and disabilities. Too often we are dismissed, our valid pain discarded because we don't have obvious physical symptoms. I want to create a national campaign raising awareness about invisible illnesses because we do not deserve to be silenced. How will we get the care that we need if no one will believe what we are going through? I experienced this first hand, almost at the expense of my health and life. I want to change how ER doctors and the general public view people with invisible illnesses, so that we will be able to live our lives without fear of being dismissed.
If you would like to help me as I conceive my ideas for this campaign, or if you are interested in being interviewed about your experiences, please email me at e.donnerklein@icloud.com. I am personally very excited to pursue this, and I hope that you will help me as I will try to make my ideas and goals a reality.
As always, I hope you all have a healthy and migraine-free week!

Sources:
https://www.stoptheclot.org/learn_more/womens_health_faq.htm


4 comments:

  1. Hi Ellie,
    I am Eileen B. a friend of your Mom's and an anallyst in Pasadena. I hope you might remember me. However even if you do not we can get to know e/o anyway. I have heard you play and attended performances of LAYO. This website and blog is fantastic, well written and authentic. Thank you for creating it. I will keep in touch. Terrific job ;-)
    Eileen B.

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  2. Hi Ellie, I'm coming across your blog for the first time and wondering how you found the adjustment to a progesterone only pill. My gyn is suggesting I switch to one based on my risk and my neurologist seems to agree. Curious if you made the switch without a flare and notice any difference in you migraine pattern after a few months. Thanks!

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    1. Hi Beth! Overall, my adjustment was pretty easy. I was also on a blood thinner at the same time which just made my periods a bit heavier, but I've actually found that the progesterone helps my migraines. I still feel fluctuations from estrogen but I have less hormonal migraines on the progesterone only pill! Hope that helps and don't hesitate to reach out on facebook or twitter if you have more questions!

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