…. Because I got blood clots, and was forced, end of story. Well that is kind of true. Let me back up a little bit.
Tuesday May 23rd, 2017 I was on my way to go camping with Jake and Willow at Interstate State Park for something fun to do since I had just graduated from college the weekend before. About fifteen minutes into our drive, I got a call from my, what is now, supervisor informing me that they wanted to hire me. Now we had two reason two celebrate: I just graduated from college, and I officially had accepted a full-time job in my field!!
Our camping trip was just an overnight trip since I had to go back to go to work on Thursday. At this time, I was currently working as a limited-term employee where I did my internship until I was able to start a full-time job. So after a trip filled with campfires, frisbee, and hiking around the park, we made it back to Eau Claire.
Now is where sh** gets real. I usually wake-up around 6:00am for work, but this particular Thursday morning, it was 4:43am and I was awoken by a terrible headache, which I assumed was just a migraine. I have had migraines in the past, but never had had one wake me up. It was usually that I could tell I was about to get one when I would wake up in the morning, and then I would take some Excedrin Migraine, and things would be well. So, back to being woken up by this headache, I took some Excedrin Migraine that I had in my cabinet, and proceeded to go to work. Throughout the day, the “migraine” was getting worse, I started feeling a little nauseous, and could not wait to go home to get more Excedrin, because the stuff I took in the morning did nothing to help. All I could think about was that if migraines were going to be this bad for the rest of my life, I didn’t know how I was going to deal with it. When I got home after a nine hour work day, I took Excedrin, tried to eat a little food, and pretty much slept until the following morning.
Now it’s Friday morning. When I woke up, I thought my “migraine” was a little better. That was until I stood up, walked into the kitchen for some water, got so dizzy, light headed, and felt like I was going to fall to the ground, that I realized this “migraine” wasn’t gone. I sat down, drank some water, took more Excedrin, and proceeded to get ready to go to work. on Friday’s I only had to work a half-day, so I figured I could tough it out. Also this Friday, I had pre-arranged plans of going to a drag show in the cities with my family, so I figured if I was going to go to a drag show, I should probably go to work. Work sucked, and I was talking to my supervisor about this awful migraine, and how nauseous I was, and she let me leave early to rest because she knew I had plans with my family later that evening.
I went home, and the thought of driving to Minnesota just seemed so awful, but in my mind I thought that maybe the distraction of family, and the show, would make me not think about the “migraine” as much, and it would be okay. I went to grab the bottle of Excedrin to bring with me, and I notice the expiration date, and it was almost exactly one year expired. So I thought to myself, “No wonder why this wasn’t working, it was expired! I’ll go buy some new stuff on my way home, and now I should really be fine.”
Now I made it to my parents, and it literally felt like my brain is being slammed into the sides of my head, about to explode, and it hurt to even blink my eyes. My mom said she would watch Willow while I went downstairs to try to sleep a little bit before we left for the drag show. I really did not sleep much because I could not lay back, sit up, or put my head on its side without it feeling like my head was going to burst.
After about an hour of attempting to sleep, it was time to get up to leave. I tried to choke down an unwich from Jimmy John’s because I figured I should probably get some food into my stomach, and off we went to the drag show. I popped in another Excedrin, and was ready to push through and have some fun. We got to the club around 8pm, and when I found out the show did not start until 10:00pm, I was not sure I was going to make it. I very slowly sipped on some soda water, and was tr to think about how badly I needed to puke, and how I thought my head was going to explode.
The show started, and as much as I truly wanted to enjoy it, I couldn’t. Having a “migraine” while strobe lights are flashing, along with insanely loud music, is not a good combination. I was on the verge on tears, and I’m sure people were wondering why I was there because the look on my face had to come across like “I hate this so much.” I sat with my elbows on my knees, holding my head with my hands, just staring straight forward. I made it to about 11:30pm before I had to tell my mom that we needed to leave because my head was hurting so bad, and I was not about to puke in the club bathroom.
We get home around 12:15am, my mom went to bed, and I was literally miserable. I can’t even describe it. Come 2:00am, I woke my mom up because I needed to go to the emergency room to get some medication ASAP. I’m not one to want to take pain killers, or a lot of prescription drugs, which you probably think I’m lying because of the amount of Excedrin I was taking, but I usually try not to take anything if I don’t have to. At this point though, I was in dire need of something, even if it was just prescription migraine medication, and something to help my nausea.
We get to the ER, and I can hardly talk because desribing my symptoms made me want to puke,, and I could hardly look at the nurse because any movement of my head caused excruciating pain to the point I had to stop was I was doing, and clench my eyes closed because it hurt so much. When I said on a scale of 1-10 my pain was at an 11, I was not joking.
Once I got into a room, I got started on some migraine medication, nausea medication, and Benadryl. It took a while for it to start working, so I had to talk to the ER doctor with a puke bag up to my face, but eventually it did help the nausea go away. The doctor decided to do a CT scan based off of where the pain in my head was the worst, which was the back, because the back of your head is always more concerning. The CT results came back normal. He told me it was a migraine like he had expected, he prescribed me some more nausea and migraine medication, and told me to go home and sleep it off. I was also told that in some cases, the symptoms worsen when the medication wears off, and if that happens to come back, and they could give me something else.
Now I’m home, “sleeping it off,” and when I wake up, it was so ungodly bad that I had my mom call my sister, who was at the store going to get my prescriptions, begging her to hurry up and get home with them. When she got home, I took the prescribed dose of both medications, and tried to hold out until they started to kick in. The bottle said to wait two hours before taking more, but about an hour in, I couldn’t take it anymore, and took another dose. Around 3:00pm, I told my mom I needed to go back because it wasn’t helping at all. As I was waiting for my mom to be able to leave, I walked to the bathroom to comb my hair because it was a rat’s nest, and after one brush, the pain from slightly pulling my hair caused me to start puking (sorry if that’s gross).
Now I’m at the ER again, and they give me the medication that’s for “the people that the first stuff doesn’t work.” It’s a different doctor this time, and he mentions that while he thinks it probably is just a migraine, he was going to consult with a neurologist to see if she had any other suggestions. When he came back, he told me that the neurologist thought that an MRI would be a good idea, just to be safe. So I get the MRI done, and now we wait. The head ache isn’t excruciating, but it’s still uncomfortable at this point.
When I said SH** gets real before, now it really gets real. The doctor comes back and goes, “so we know why you are experiencing this bad headache…..” I have a very vivid imagine in my head of him standing in the doorway with a very straight face. You know when they start off like that, it’s usually not a good sign. He continues, “There is a blood clot in one of the veins in your brain, and we are going to have you do a specialized MRI, called an MRV, to highlight all the veins in your head so we can get a better picture, and we will go from there.” I wasn’t really sure what to think at this point. Part of me was relieved because I knew this couldn’t just be a migraine, but I also had no idea what to expect with a blood clot. All I could think about was getting my head cut open.
Fast forward to the results of the MRV. The doctor came back in and goes, “So, there is the clot we saw in the first scan, and we can also see that your right jugular is 100% blocked.” My mom’s face went completely white. We started discussing causes of this, and at this point it was determined that it was caused from being on birth control. Need I tell you that while I was waiting for the MRI results, I had taken my birth control because I was a freak about taking it on time. I was instructed to stop taking it immediately, and was put on blood thinners. I was told I was going to be taken by ambulance to a hospital in the cities that had specialized doctors, and I would be put in the ICU due to high risk of having a stroke.
I forgot to mention this earlier, Jake was supposed to come to my parents on Sunday after work so we could do something fun in the cities for Memorial Day. My mom called him to let him know what was going on. He knew I had gone back to the ER, but knew nothing other than that. My dad had come to the ER after we found out about the first blood clot, and Jake was going to meet us at the other hospital as he was driving from Eau Claire, and we did not really know what to expect at this point.
I can officially say I have rode in an ambulance now if that’s a cool thing to say you’ve done. I arrive at the ICU, and the neurologist came in to meet me. At this point, he informs me that every vein is either 100% blocked or partially blocked, along with my right jugular still being 100% blocked. I was going to be closely monitored for changes in my neurological functioning, and that as long as I did not lose any of my functioning, I would not have to go under to get them removed.
I won’t go into all the details of the hospital except for the fact that during one of my blood draws, the bandage came loose, and since I was on blood thinners, blood practically exploded out of my arm and got all over the bed. Then when a nurse came back in to check on me, she asked if I was menstruating, and it was just funny because there was only blood by my elbow. It was pretty comical if you were actually there. The doctors also could not believe how young I was when they saw me, because typically patients they are working with in this conditions are much older. All of my nurses were like, “Wow, you’re so normal compared to most of our ICU patients we work with.” My family and friends kept joking about how I was the healthiest person they knew, and couldn’t believe that out of all people, I was the one to end up in the hospital with blood clots.
During all of this, I never really got too scared because all off the doctors were so confident that everything would be okay, and they knew what they were doing. They also told me I would not get my head cut open, and that was all I really wanted to hear. I got a scan right before I went home, and literally nothing was different. They told us it would take 6-9 month before they would go away, but just knowing that I was in this serious of condition, and about to go home away from the doctors made me nervous. That first night I could not sleep. For one, I could not lay flat because the pressure would build up in my head, so I had to sleep sitting straight up, but also because that was when I started getting scared that I was going to have a stroke at any moment. I was instructed as I left the hospital, that if anything changes, or I notice anything different happening to my body, get to the ER immediately.
Since I’ve really been rambling about all of the stuff that happened leading up to the blood clots, I will make the post-hospital stuff a little bit shorter. I still was having headaches 24 hours a day, taking Tylenol to lessen them, but they never would go away completely. About 2 days after getting out of the hospital, my throat started to feel swollen. I could still breathe, but it was just swollen. I went to the ER, they tell me my throat could be bleeding from the outside due to the blood thinners, they do a CT scan, and everything came back clear, thank goodness. The doctor gave me some type of steroid shot, and it went away. Who knows why that happened?
Then a few days later, I was just coming back to Eau Claire to spend the weekend here; I should mention that I was staying with my parents throughout all of this, because I needed to be closely monitored, and my mom was able to get off work, and Jake’s work schedule switched to nights. So I just get back to Eau Claire, and I started to experience sharp chest pain. I try laying down for a while, and it didn’t stop. Let me also mention that by this point, I have become so hyper aware of my body, that I notice every little twitch, pain, and cramp. Since the pain wouldn’t go away, we drove to the ER in the cities because that’s where I was instructed I had to go during this first month, and they tell me I could potentially have a blood clot in my chest. The did an x-ray and CT scan, everything came back clear with that too, and I needed to follow-up with a cardiologist. When I saw the cardiologist a week or so later, and everything turned out fine.
Now were about three weeks in, I’m still having headaches every day, and I’m in Eau Claire again. A few days prior, I had noticed a vein in my left arm sticking out a bit, and was pretty firm to the touch. Over the next week days, it began to bruise, and was beginning to become very tender. I ended up in the ER in Eau Claire, and it was confirmed that I had a superficial blood clot, meaning that this blood clot could not detach and move to my lungs but was still a blood clot. Even though it wasn’t concerning, it was still annoying because it was just another thing to have happen to end up in the ER. They said it was most likely caused by the PICC line I had while I was in the ICU.
The following weekend I was back at my parents, and around 10am my arm just started throbbing. It was throbbing to the point I made Jake hold Willow’s leash because it was uncomfortable. It was not my left arm, otherwise I would have started freaking out because that is the stroke arm, but it was still very concerning. I tried to ignore it all day, but by the time I was about to go to bed, the pain was from the top of my arm, down through my fingertips, and I began to get nervous, and decided to go back into the ER once again. They did an ultra sound checking for clots, and yet again, everything came back normal. They were not sure why this was happening, but they could confirm it was nothing life-threatening.
During the weeks leading up to that last ER visit for the arm pain, I still had daily headaches, I had to get my blood drawn once a week to check my INR, which is how they control how thin your blood is, I was giving myself shots to get my blood to a therapeutic level, I was still sleeping up right, and I was not working or exercising.
Over the next few weeks, I was able to start to light activity, sleep in a normal position, stop giving myself shots, and just take blood thinner pills. The headaches were getting better, but still required daily Tylenol, since Tylenol is the only medication you can take on warfarin.
As I said before, the doctor told me it would take 3-9 months before the clots would go away, but the average time was 6-9 months. Last week I went in for my 3 month scan, and THE CLOTS WERE GONE. They were amazed at how clear was head was in such a short amount of time. While I was in the hospital they tested my blood to see if had an unknown blood clotting disorders. One of the results came back positive, but I have to go back in next week to get my blood retested to confirm the results. If the results are positive, I may have to go back on blood thinners, if not now, I will most likely need blood thinners and to be closely monitored if/when I become pregnant. I will probably need blood thinner when I get pregnant even if the clotting disorder comes back negative due to the fact that the clots were caused from the increase in estrogen.
Birth control is still deemed the reason for my blood clots. Even if I have a clotting disorder, it would have heightened the chance of getting clots while on birth control. It still is crazy to me because I was in the doctor’s office 2 weeks before all of this happened, talking to my doctor about getting off of the pill. My doctor always mentioned the chance of estrogen-containing birth control causing blood clots, but I never thought it was going to happen like it did. Now thinking back, I think about all the times I had random head pain, and wonder if it was from the clots forming.
I’m so grateful that I decided to drive home to my parents that day, because Jake would have been at work, and who knows if I would have drove myself into the emergency room. I am also so fortunate that my work was so understanding through all of this, and that even to this day with all of the follow-up appointments that I have needed to go to they understand the importance of me going.
I have chosen to stay off any form prescription birth control at this point. I could tell that birth control was affecting me mentally in a way that I did not like, and that was why I went into my doctor to get off of it. I am able to get on a progesterone only, or hormone-free birth control if I decide I want to, but for the time being, I am going to stay off birth control.
I was only on the pill for 2 years, and I can tell that it really messed with my body. I can not imagine how my body would react if I would have been on it for 10+ years like some people. I not only got blood clots, but now that my body is trying to get back into its normal cycle, I can tell things are quite right yet. I am going to get my hormone levels tested next week just to see how my body is doing.
I do not want this post to come across as shaming to those who are on the pill, or other forms of birth control, but I do want you to be aware of how it can have a major impact of your health. The percentage of people that get diagnosed with Cerebral Venous Sinus Thrombosis, which is what I had, is small, and even smaller for those who are diagnosed from being on birth control, and probably even smaller for my age, but it is still something to think about.
I started reading the book Taking Charge of Your Fertility by Toni Weschler, and hopefully once I can get my body back to its healthy, normal cycle, I can update you more about the book, and what my experiences are. It’s a book if you want to avoid pregnancy, or are trying to get pregnant, so I recommend any women to read it!
If you have any other questions about my experience in the hospital, or really anything having to do with my time on birth control, or getting blood clots, please ask. I am very open to talk about my experience, and would love to chat!