Dec 18
kindred0199
kindred0199 , Posted on SUPPORT NETWORK Blog

The Patch (birth control) aided in my CVST

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It was finals week my junior year of undergrad. I had a headache. I'm a perfectionist and I thought it was stress. Two days of the worst headache I had ever had. I called into work and forced myself to go to classes. I was striving for 4.0 in all my classes, but my head was absolutely killing me. Wednseday morning I woke up and I thought my head was going to pop. I sat up in bed and the first thing I noticed was my right ear sounded muffled. Like I had an earplug or cotton in it. Weird. 

I took some migraine pills and got ready for school. I had a final in Social Psychology. As I was getting dressed, I felt very off. . . unbalanced almost. My right temple felt like something was trying to use explosives to get out of my skull. I ignored everything and headed off to my favorite coffee stand. As I always do, I tried a sip of my coffee to make sure I liked the taste before I left the stand and pulled onto the main road. I couldn't taste it. It took a second for me to process this. I took another sip. Nothing. My lips were tingling. 

I then realized something was very wrong. I drove to the nearest urgent care and explained to the front desk I was having some weird sympoms. Thankfully they weren't busy and I was taken back right away. While I was talking to the nurse, I was having more and more trouble getting the words out that I wanted. I couldn't concentrate. She had me do some tests (touch my finger to my nose, follow her finger, ect.) which I passed. But when she touched the sides of my face to ask if I could feel them equally, I had lost feeling in the right side of my face. 

I was immediately sent to the hospital and thankfully rushed back for a CAT scan as soon as they could get me back. I guess someone said "stroke" and I was frontlined. I cannot describe to you the pain I was in with my headache. I wanted to die. The CAT scan came back and they said they saw something, but they needed an MRI to get a clearer image. 

An hour later I was in the machine for more imagining. They found a large clot blocking my left cerebral sinus, clogging the blood that was supposed to be draining out of my brain on that side. Hence why my brain felt like it was going to explode. 

I was rushed upstairs into the neurology ward and put onto a drip to break up the clot. They were also pulling blood from me every few hours for tests. Why was I here with this clot? 26 in perfect health with no family history, never smoked a day in my life, never tried drugs, didn't drink, and good everything? I was asked all sorts of questions. Well. . . hey I was on the patch for birth control. Ok. This has a high risk of clotting, but rarely seen in the brain. 

A few days later, my clot still had not gone down. I refused morhpine and so was in agony when the tramadol wore off. I couldn't walk unaided, had a huge drop in my memory retention and had problems with grabbing and holding things. By day four, there was a break in information. They found out I had a blood clotting disorder called Prothrombin 20210 Mutation, or Factor II Mutation. Who would have guessed? 

This on it's own causes a high risk of dangerous clots. Add that with good old high doses of estrogen with the patch and you got a recipe for a chance of a CVST. 

I was in the hospital for a week. My clot did reduce finally, but it took two years for it to break up completely. I had physical therapy to help regain my balance for walking and it took 3 months before I could walk a mile without needing help. This all happened in June 2015. 

It's now December 2018. I still visit with my nuerologist every 6 months and get MRIs every 6 months. We are continuously finding spots on my scans and she's not sure what exactly they are, so we have to monintor them to see what they do. I am on Xarelto for life. I'm also on an anti-sizure medication to help with migraines. Seems those came with me after my episode. They were pretty dibilitating until the meds. 

If you know ANYONE who is using birth control like the patch or the pills. .  PLEASE warn them about the risks of using these forms. I know that it's in the little booklets you can read when you get the boxes to use the product, but it's not worth the risk!! There are more and more studies being done that find women being diagnosed with CVSTs and birth control is the cause!!  While I realize that my blood clotting condition was very much an aggravating factor, please let people you know and love know. I would never wish this upon anyone. 

 

One thing I'd like to know. . . for anyone else who's experience this or who knows any survivors. . . ..  has anyone had any personality changes since their CVST? I've talked to my neurologist and she doesn't seem to think much of it. But. . . I really feel like things have changed for me since. I had pretty serious depression for 1 year after and even now, I'm not the same person I was. Just wondering if it's me or if anyone else has experienced a change in themselves. 

2 Comments
  • AHAASAKatie
    AHAASAKatie,

    Thank you so much for sharing this with us! Best Katie 

  • myra42158
    myra42158,

    Thank you for sharing, I had the same thing happen to me last month. Went into ER with severe migraine and had been getting migarines for over a year and on oral birth control pills and found ot have a clot. However when I started on heparin I hemoraged in my brain and they had to do an emergency craniectomy as my brain was swelling and herniating that I was dying. I'm only 26 as well so hearing someone's similar story makes me feel less alone. Myra

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