So I think I finally figured it out. It was ALL the Mirena. Hundreds of dollars, hours, multiple doctors, and a year of hell and I still had to figure it out myself. I am making this blog to give information to other women looking for answers to their dizzies, fatigue, heart problems, anxiety, and more. Are you on Mirena? It could be the cause.
Here's my story...
I'm a 31 year old women. I lead a healthy lifestyle - athlete, nonsmoker, and (mostly) vegetarian. I got Mirena (the first time) in 2009. My doctor at the time believed I was a high risk of stroke because I got migraines through my teens. Since estrogen birth control pills put the takers at elevated risk, I was advised to go onto Mirena or Paraguard. I got Mirena and was immediately HAPPY with my decision. My awful menstrual cramps went away and I no longer had to use tampons an pads. Four years passed...
I got sick...
This past October (2013) I started experiencing strange symptoms - dizziness/lightheadedness and headaches. My doctor said it was dehydration. Strange since I drank 2 L of water every day in addition to all other drinks.
In December I started experiencing cramped up arms, sore joints, and fatigue. It would feel like I had spent two days lifting weights and climbing mountains even though I hadn't done a thing! One night I woke up at 2 am. My back felt like someone had jammed a hatchet in my spine between my shoulder blades. My fingers and toes were tingly and numb and all my muscles ached. I went to the ER. They prescribed Prednisone and sent me for an MRI on my neck. Things got worse. Not only did non of my pain go away, but I reacted badly to the Prednisone - tingling skin, increased pain, spacey, and the constant feeling I was dying. I ended up in the ER again when I started violent shaking uncontrollably and had chest pains. The MRI showed nothing except some Arthritis
in my neck. Back muscle spasms were to blame for my pain.
As 2015, I visited a neurologist looking for answers. I was convinced I had MS or something. He diagnosed me with a Vit D deficiency. In the appointment I asked, "Could this have anything to do with hormones related to my menstrual cycle?" He replied, "As a male doctor, I can't answer that." WHAT?!?
Vit D supplements did nothing. I continued to experience dizziness, vertigo, numbness/tingling, stiff neck and fatigue. The only explanation I could figure is that since my Mirena was reaching a 5 year mark, it might be "running out" and causing me problems. My solution? Get a new one! In March, I got a new IUD put in and waited to feel better.
The new Mirena ... It's Lyme? MS? ALS? A Tumor?
After the new Mirena, my symptoms continued and new ones arose. In addition, scalp tingling, muscle cramping, and extreme fatigue got worse. In May, I developed very annoying "Eye Floaters" - black spots in my vision that to this day follow everywhere I look. They are so distracting. I started making doctor appointments again. My primary tested me for Lyme (negative) and sent me back to a neurologist (new one this time) and rheumatologist. None had answers- although the new neurologist did say - if you don't get any answers, try removing the IUD in case it's the cause. My tests including a brain MRI and EEG. Everything came back negative including tests by the rheumatologist.
Is it anxiety?
In July, I started having problems where I felt the urge to gasp for air. I went to the doctor again and
she said it was anxiety. The problem was...I had no stress in my life - great husband, family, home life, and I was on summer vacation as a teacher! Talk about no stress! In addition, I started having heart palpitations and feelings that my heart was 'flipping' or skipping a beat. It was terrifying. This, combined with random dead arms/sore arms and jaw made me worry that I was having weekly heart attacks. I also started having sore hand muscles, weak arms, and more. I started thinking ALS.
One internet search provides answers.
I called the doctor to get an appointment to talk about my palpitations but they couldn't get me in for weeks. I decided to turn to the internet. I ran a search for "anxiety" and "mirena" and it OPENED THE FLOODGATES! I found forums, blogs, and websites all dedicated to similar women - dealing with the EXACT SAME SYMPTOMS I was! It was a relief! I'm not crazy. It was also infuriating...Why didn't my doctors come up with this? Why didn't they warn me?
I got my IUD removed a week later (1 week from today). Since, I am sad to say haven't felt better (YET) - in fact, some symptoms have gotten worse. This is to be expected according to forum posts. I decided to diary my recovery and process of going through the "Mirena crash." (mirenasurvivor (dot)blogspot (dot) com) I'm hoping that other women like me will find this and it will give them answers and hopefully comfort. When I have bad bouts of heart palpitations or muscle weakness, I go here and type in "mirena" or "mirena crash" and find that I'm not alone. It also lead me to Kristi's blog My Life After Mirena. It gives me hope that I will get through this and that I'm not alone.
I hope this does that for other women.
Hang in there. You are not alone.