Mirena IUD and Pseudotumor Cerebri Risk

Harvey Kirk

By Harvey Kirk
Posted October 19, 2015


A number of women have reported suffering a condition known as pseudotumor cerebri (PTC) after being implanted with the Mirena intrauterine device (IUD). Also referred to as idiopathic intracranial hypertension (IIH), this condition involves a buildup of fluid pressure on the brain, which can mimc symptoms of a brain tumor.

The Mirena injury attorneys at Saiontz & Kirk, P.A. have been reviewing potential claims for women who suffered migration or perforation injuries caused by the birth control implant for several years. We are also now evaluating the potential for Mirena pseudotumor cerebri lawsuits for women who have developed this serious and painful condition.

Symptoms of IIH/PTC from Mirena side effects may include:

  • Moderate to Severe Migraine-Like Headaches
  • Ringing In The Ears In Time To Your Pulse
  • Nausea and Vomiting
  • Moments of Vision Loss In One or both Eyes
  • Loss of Peripheral Vision
  • Double Vision
  • Flashing Lights
  • Neck, Shoulder or Back Pain

Pseudotumor cerebri is a known side effect of levonorgestrel, the active progestin emitted by Mirena IUD birth control implants to help prevent pregnancy.

Since at least the 1990s, studies have found that it binds with other hormone receptors that can increase the risk of hormonal side effects, one of which is IIH/PTC. In addition, when taken alone, as it is with Mirena, studies indicate that the progestin significantly decreases sex hormone binding globulin (SHBG), which works to regulate hormonal side effects as well, including prevention of IIH/PTC.

In birth control pills, when levonorgestrel is combined with estrogen, like ethinyl estradiol, the estrogen increases SHBG levels, working as a counterweight to levonorgestrel’s side effects. However, critics say that the Mirena, by introducing levonorgestrel into the body alone, not only lacks the counterweight to hormonal side effects, it may accelerate them.

Despite the known link between PTC/IIH and levonorgestrel, the Mirena warning label makes no mention of this condition or the related tumor symptoms.

If you or a loved one have been diagnosed with pseudotumor cerebri, idiopathic intracranial hypertension or related problems caused by a build of a fluid pressure on the brain while using Mirena, request a free consultation and claim evaluation.

12 Comments • Add Your Comments

  • glennda says:

    Hey im in the panhandle and that is how pensacola florida is handling me im on the way to er now with pressure to my head .my doctor usha condu doing every thing but removing this device the er want take it out i have all these symptoms it drove me to lake view thinking im loosing my mine

    Posted on December 2, 2015 at 2:48 am

  • Kristin says:

    youre not alone. I’m in Pensacola too and can’t get anyone to take this thing out of me! Over the past 3 years I’ve been experiencing all these symptoms and it is freaking me out!

    Posted on December 17, 2015 at 12:14 am

  • Tonina says:

    I had the Mirena inserted 10/2006 and not long after that began having daily headaches, migraines, nausea and whooshing noise in my ears all the time. Well finally seen a neurologist who did a spinal tap and diagnosed me with PTC in 9/2010. Mirena was removed 10/2011 and am still left with this debilitating disorder.

    Posted on December 18, 2015 at 9:56 am

  • Anita says:

    I got Mirena 09/2010 and started having serious neck pains eventually having numbness in my arms and blurred vision. Kept going to numerous doctors and they were pretty much thinking I was crazy. Finally seen a neurologist 12/2010 which at this point I couldn’t perform simple coordination test, couldn’t use my arms/hands, and was legal blinde. I was admitted to the hospital and found out I had PTC. Was placed on high medication and I have had more then 15 spinal taps which has left me with scar tissue. Lost 37% of my optic nerves. The doctors couldn’t get me better and was about to do a shunt but the dr decided to take out my Mirena just to see and within 3 days I was getting better however I am better I still have complications.

    Posted on February 2, 2016 at 11:57 am

  • Amber says:

    I had mirena for 2.5 – 3 years and it was taken out in 2010. Yesterday I was diagnosed with pseudotumor cerebri. My pressure was extremely high and I wonder how long I have had this condition and if mirena caused it.

    Posted on April 15, 2016 at 10:40 pm

  • Tracey says:

    Hi I live in the UK and had the mirena coil fitted in Dec 2013. I immediately started suffering from flu like symptoms, staying in bed, shoulder and neck pain. Numbness in arms and then over Christmas severe headaches. In January 2014 I woke up with a major headache and later on in the day couldn’t lift the kettle with my left arm. Two days later my vision in my right eye was strange. I went onto have MRI, CT, lumbar puncture, blood tests, numerous eye exams and have been diagnosed with a stroke of the eye caused by a blood clot. Obviously I had the coil removed. I researched for months as I believed that the coil was to blame, eventually discovering that in our leaflet that is similar to the Canadian version it states that the rare side effect in the UK is a rash and in Canada it is a blood clot in the eye. I contacted solicitors over here but was told that as it wasn’t printed in our leaflet for the coil and only in Canada I couldn’t take it further. So I am now left with peripheral vision damage to my right eye

    Posted on May 7, 2016 at 2:59 am

  • Alysia says:

    this is so similar to my story. It’s been a living hell 🙁 In Australia nothing is really happening about it yet so no lawsuit options.

    Posted on June 21, 2016 at 9:34 am

  • Staci says:

    I have had the blurry vision and sharp headaches feeling like there’s a knife in my eye. I’m still trying to get an alternative bc and get this out.

    Posted on August 8, 2016 at 4:15 pm

  • Latosha says:

    I’m a 39 year old mother of 2 daughters ages 15 and 16. I’m on my 3rd Mirena IUD. My most recent IUD was implanted July 2014. Shortly after getting this IUD I started having extremely rapid heart rates, short of breath, mood swings. I was diagnosed with Tachycardia and put on medication. July 2015 I started having horrible headaches. I had never had a headache before in my life but all of a sudden I had debilitating headaches, neck/ shoulder pain, started being dizzy and having blurred vision. I had migraines for 30 days straight then finally went to my doctor. I was referred to a neurologist. I had a MRI of brain and MRI of neck to rule out blood clot. I was given EEG. Doctors could not determine what was causing the pain and pressure in my head and neck. I also have had weight gain or about 25 pounds and back pain since having this last IUD put in. I always told doctors this IUD felt different and I vowed that once my 5 years were up I would never get another MIRENA IUD. I’m currently seeing a pain management doctor and receiving Botox and steroid injections to help with Migraines. I want my life back. Please help!

    Posted on November 22, 2016 at 9:32 am

  • Megan says:

    I got my iud in July 2012, I started having severe back and neck pain a year later I had self medicated for the pain.. never really like going to doctors. I’ve had servers migraines but thought it was normal and genetic because my mother has them. I’ve messed my liver up due to taking to many ant inflammatories and started getting stomach ulcers as well. I had an mri done this yea 2016 and was told they didn’t know exactly why my back and neck was hurting also was told I had sciatica. Also the nausea is and everyday thing for me. I would confuse the morning neasea as morning sickness thinking I was pregnant I’ve test so many times to be sure.. I still suffer from the severe pain and don’t want to seek a pain clinic … please help!

    Posted on December 20, 2016 at 12:41 pm

  • Sheray says:

    I got the Mirena shortly after my first daughter birth in 2008. I started getting loss of appetite for food and sex, severe migraines, mood swings, sensitive to lights, ringing-ear infection: upper respiratory infection. Also, left leg pains, shoulder, neck and face tenderness and mood swings and painful intercourse with my fiance at the time. Thinking that it was do to having a high risk pregnancy. About 2.5 years of these symptoms I went to a doctor and I developed a bacterial infection and was sent home with a slip for meds…then another 3 years went by (yes they left it in for 5.5 years) after that I suffering from the same symptoms as the bacterial infection… went to the doc and they said I have an STD and the Mirena had moved and went sideways into my uterus wall. Very upset at my husband and thought my life had crashed….he stated he never had an affair…to this day he and I are baffled by it. Moreover, the one doc knew it was in wrong and gave me a depo shot and a slip for meds. We went for a second opinion and this doc confirm it was an STD but also did and emergency removal of the device and said it was dangerous for it to be in and that it only last 5 years. So why didn’t the other doc take it out after knowing it’s been in me for 5.5 years. Well in July of 2014 I got pregnant off the depo and with this pregnancy I was always sick with upper respiratory infections, and sever chest pains in my sternum…my co-workers always told me my hands, feet and skin looks blue, I retained so much fluids…Well I had to go on bed rest a week earlier than my scheduled maternity leave. On Saturday May 16, 2015 I was in different pain like my stomach was being ripped out. We during my delivery of my second daughter… I severly hemorrhage and the doc was trying to get the placenta out and said it had attached to my upper uterus wall and the rest had kind of died out…so she reach up inside of me and pulled…I passed out after that and woke up 4 hours later. They had to do emergency surgery and four blood transfusion and said my white blood cells were really high. They didn’t know why this had happened…So during surgery the doc decided to do a tubial ligation too.
    One year later the tubial ligation failed. We couldn’t have the baby. This was so traumatic for us…So anthor doc put me on birth control because we don’t have money to get to tubial ligation failure fixed. During all this my symptoms got worse. Blurring vision in both eyes, pain in either one side like someone had bet me from my feet up to my head. My eyes hurt like someone through a baseball at my eyes. I have a frozen left shoulder and neck and lump behind my left ear… Sever leg pains and joint and back pains, arm pains and numbness. My left ear hurts everyday. The doc said I might have Lupus and Ruemetoid arthritis due to my bad pregnancies. …to this day I have no insurance and dealing have been dealing with this for many years…I know all of this is due to the Mirena messing up my female organs and hormone.

    Posted on December 4, 2017 at 2:20 pm

  • Jessica says:

    Is there a lawsuit regarding Mirena and pseudotumor cerebri? I have had the Mirena IUD twice. After my 1st pregnancy in 2013 and currently have the same IUD from 2017. My dr told me they extended the time from 5 years to 7 years and said I didn’t need it replaced yet. I was diagnosed with psuedotumor cerebri in 2020. Now take diamox 4 times a day for it. After finding out that there might be a possible link between the IUD and psuedotumor cerebri I am going to have it removed.

    Posted on September 24, 2023 at 11:06 pm

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