I know that no one has posted on this thread in years, but I have been dealing with the backlash of this drug and I need to write it down no matter how crazy it is. So hear it goes...
I got on Nexplanon in April 2013 because I was tired of the pill and my doctor recommended it. Soon after I started to feel different and then one day out of the each month I felt emotionally crazy. Like I couldn't control myself. Then it went away the next day so I ignored it. Starting in November 2013 I started having stomach queasiness (that lasted for 1 1/2 years) and my eyes feeling tired. Month 3, January 2014, my life was hectic and I ignored the off feeling I had and the daily fatigue I was having. February is when everything went bad. I was in the 2nd month of school when, out of no where, this debilitating migraine hits. As a side note I use to get migraines freshman year of high school but they went away. The migraine was one of the worse I have ever had but little did I know that was just the beginning of it. Also that is when my eyesight changed. My eyes could not process light properly and everything was speckled. The next day came and nothing had changed. I was just trying to go from one day to the next. Fighting each new wave of the never ending migraine. A week has now gone by and I am an emotion wreck, in constant pain and my sense of self is fading. I tell my parents and continue to try every home remedy. (I really don't like to get medicine from doctors and to truly admit when things are really bad). Week two my now ex get hospitalized with pancreatitis. His family is not helpful so have to take up all of the Doctor and house duties to make sure he gets better. That takes 15 days. Once he gets better I broke down to my parents and they made the first general doctor appointment for me to get anything to make this migraine go away. At this point I started to develop the beginning stages of my next group of symptoms. I was having a harder time talking. The words would be there but I couldn't spot them out. I also felt stupid. I would forget actions, like how to do easy things which then would require me to spend way to much time re-remembering how to accomplish the task. On top of that my balance and equilibrium was very off.
So now 27 days after the initial migraine the doctor gives me medicine that is not directly for migraines and gives me a refeal for a neurologist. The medicine does next to nothing. My daily caffeine and tricks were helping more than them.
I was able to get in with the neurologist at day 47. At this point I was in my own h*ll. My family couldn't figure out what was wrong and I was trying to keep myself together as much a possible. When I get to the doctors I am praying this man can give me anything to ease this pain and everything else. When he comes into the patient room to meet me the first words he says is, "Hello, what can I do to help you today?" I felt like a got thrown a life saver and mixed with my raging emotions, I begin to cry. I told him everything and the two things he did was have me get testing done, and gave me medicine to take, 3 types. Due to a problem, I didn't receive my medicine till day 51. For the first time I had some reprieve from the mind numbing pain. The next week I was exhausted but the migraine was pushed down; however, I could still feel it underneath. Now that, with heavy medication, one problem was handle I realized the extent of the other ones. Even though I was doing good in school, God only know how I pulled that off, all my other symptoms were getting worse. I was have a harder time speaking, which really affected me in class. My vision had completely changed. I was seeing dots and starts and black spots. I couldn't wear my contacts because my eyes could handle it. It hurt to focus and light killed my eyes. My equilibrium was bad. I would use walls to get around. And during al this time I was trying my best to act normal. Even though I it was the scariest time of my life.
I had mri and cat scans with no real findings. I had a ultrasound and still nothing to explain this. I went back to the neurologist with my parents, and we talked about options and my next path. I asked him if my birth control or allergy shots could have done them and he told me no, I had it in too long for it to be it. So we pushed that thought out of our minds. Then he told me that this all could be from anxiety and depression!! I couldn't believe it!! He believes this to be the case because I started crying when I first meet him!! IF anyone was dealing with these crazy symptoms they would have some anxiety!! I calming told him that during the last months I have been evaluating myself to see if maybe different foods, areas, smells make it worse or if any time of day or month. And of course, just because I felt crazy for everything I was going through, I evaluated myself. And no matter if it was a boring day or a bad one the symptoms didn't respond accordingly. My parents, understanding that these things that were happening to me were not caused from anxiety but instead they were a symptom of there own, encouraged me to find the answer.
Another month has pasted and we didn't know where to turn. It is harder for my family and friend to understand and be really supportive because I have no positive test result to give them even though I have giving a lot of blood to find some sort of answer. My neurologist had me stop taking the medication and switched me to Topamax, which I have taken before, because that medication over time can damage the body. I started to get this horrible burning, hot, electric pain on the top of my foot. When it happened I couldn't walk til it stopped. Then I would get these weird hot red patches on my legs. They would only last a few minutes and they didn't hurt but it was really random. After it happened 7 times I took pictures and told my mom. She didn't know how to believe me, and I can completely understand after everything I have told them, but when we were laying outside legs up, a big red patch appeared. My mom was in shock. It was the first physical sign that I am telling the truth. That I was not bat shit crazy.
Two days later I was riding the train home when the pain in my foot got so bad my mom said to do to the hospital. Long story short, after many tests everything came back mostly normal. But when this specialty doctor came in to tell give me my results and to tell me I was having an allergic reaction to the Topamax, she did the one thing my neurologist never did, she gave me a physical examination. Went she looked into my eyes she told me I have a bad Nystagmus and to go to a neuropharmacologist. I have had no past issues with my eyes except them not being 20/20. This was amazing news!!!! Another positive, another path to finding out what is wrong. And proof that I am not batshit crazy!
During the two weeks it takes to see the doctor my parent have made the most important discovery, that everything that has happened to me could be from my birth control. My perents are amazing. And they have been asking anyone of caliber there opinion of what is wrong with me and that is how my dad found out about the bad reviews for the birth control. My mom found all the posts on medical and blog websites.
At this point, I have given 15+ vials of blood, countless Mir and cat scans, I had a needle in my spine to check spinal fluid, ultrasound, and more. With that I still had of all of the symptoms and they were still getting worse, I was now unable to write properly. It took to much for my brain to hear the teacher, process it, and write it down. It was horrible! I was the top of my class and I couldn't answer questions without stumbling over my words or not be able to say it at all! I was still insanely hormonal, nauseous, dizzy, lightheaded, and the best one was my eye sight. Between the dots, black spots, reflective light off of everything staying in my eyes, and what I call pixelated vision all the time and the add on of other crazy things, I couldn't drive at times. During all of this, all the months of not knowing, I truly thought There was a chance I was going to Die and then they would figure out what was wrong.
Going back, my parents sat me down on the couch and told me they think they figured out what was wrong. I will be honest, I didn't want to hear it. I had little hope of finding answer and I didn't want to watch my parents' idea get tested and fail because it hurt to much to watch. But then my dad said it is my birth control because of what this pharmacist said and then they both got a little teary eyed. My mom then told me she did some digging and found posts on medical and blog websites. She told me that women were saying they had a lot of the symptoms I was. How I couldn't wear my contacts, the migraines, the speech issues. I was stunned, speechless. I think I asked a few questions and I then started to cry. I couldn't stop. I felt sane for the first time in a year and a half. It was not in my head it was this horrible birth control.
After my first bout of crying, I told them I don't care what the doctors says I am getting this taken out tomorrow. I called the next day and told them it was an emergency and was in the office that day. The nurse practitioner didn't really believe all of what I was saying but I was so adamit about getting it removed she real didn't have a choice. She told me that if this really is the cause that it should take 3-7 days for me to feel a slight difference and a few months to be back to normal. I made a follow out appointment 2 weeks after.
Day 4 I started to notice I slightly clearer head. And slowly I started to feel like myself again. I didn't full realize how far gone I was.
The next week I had that appointment with the eye doctor. Even though I thought I found the answer, I figured it couldn't hurt to see her. She gave me a bunch of tests I never past with flying color on any of them but the results where not bad. She told me my optic nerve is good. And my nystagmus is down from the hospital visit. I told her about the birth control and she said then all my eye issues continue to get better.
I was so happy.
I continued to improve for two months, everything was still there but mild. And then suddenly everything spiked back up to mad symptom levels. A day later I spotted alittle and it was like a damn broke so all my symptoms went back to mild again. It was very weird.
On October 9 2014, my body tries to ovulate for the first time. That resulted in same day appendectomy and ovarian cyst drained.
My body didn't know how to handle it's own sexual hormones, that is caused my appendix to be removed.
My hope for the better was fading.
At a follow up my gynecologist was taking notes of my entire story and wanted to wait to see how I feel the next month.
When I spotted again, the symptom reaction was the same and during the month the would fluctuate of mild to strong was increasing. I felt helpless. I thought things were getting worked out.
The next follow up with the gynecologist I told him that it feels like my body is reacting to my own hormones the same way it did to the birth control. he told me that my body needs time to adjust and had me start on Nuva Ring. It is a lower dose of hormone than my body and it should help given time.
1 1/2 years later and I am better except for my vision and mood swings. I am still on a path to make myself better.
I am not a doctor but I wouldn't wish anyone to go through what I have. So Please, if you get on any medicine and you don't feel right or you get one of the side effects, get off of it immediately!! You don't know the long term problems it could give you!!!
Thank you if you read it all. I wrote this at night so sorry if the grammar is bad.
Alyssa