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Re: My Mirena Hell....and what I'm doing
Journeyforfaith Views: 15,082
Published: 7 years ago
This is a reply to # 2,041,083

Re: My Mirena Hell....and what I'm doing

I have been crying reading some posts because I was a healthy mom of 2 little boys and my life is permanently damaged... I had a seizuretoday, which makes me more emotional. Im on 3 meds and have a VNS... What kills me is that this could have been avoided, I chose to have the IUD put in. There is no epilepsy in my family, I didnt grow up with this!!!! I want to share the story about what resulted upon the removal of my Mirena IUD on June 14th, 2010 at 2:30pm. Happened to be the same night I awoke at 2:00am with uncontrollable seizures. What happened to me almost resulted in dying. The Dr’s dont say it…YET, but I know my body, I know in my heart this wasn’t just a virus. I did not get sick with uncontrollable seizures from just encephalitis. A virus did not just attack my brain in the middle of the night out of the blue. There is no history of epilepsy in my family and I rarely got sick, didn’t even have a General Dr.
June 14th, 2010 was a perfectly normal day. The kids went to camp, I worked out, went for lunch with a friend then had a Dr’s appt at 2pm to have my IUD taken out. The IUD is effective for at least 5yrs, and this was time for mine to be removed. I had a little infection but thought nothing, the week before I had a fever so I took ibuprofen for a couple of days and was fine. Friends and family tell me now that I was acting a little off and manic that week but who knew. At around 2am I woke up with uncontrollable seizures. My husband was with me and called 911. They took me directly to the ER, where I remained in ICU for almost a month. Every test imaginable was done, MRI’S, Spinal Tap’s, EEG’s 24hours a day checking my brain, autoimmune, lupus, hepatitis and genetic testing, There were infectious disease Dr’s, you name it, I had it. They came up with nothing… Finally they found something in my blood…Microplasma??? Which is a cold. They said I had encephalitis, which is swelling and inflammation of the brain. Half of the time they find out the cause, half of the time they don’t, and the truth is when they do know it is worse because it can be deadly. In my situation they did not find out the cause. They needed something to say after a month. I got a virus… it attacked my brain and my nervous system couldn’t fight it, I was having uncontrollable seizures and the Dr. was doing everything possible to stop them when finally they put me in a coma.
I am told I asked the same questions everyday and had no idea what was going on. I needed to be calmed down as to why I was in the hospital. I asked the same questions every day and existed as somebody else, it was like Groundhog’s Day! After almost a month, the seizures stopped like they had been and I was in a relatively better state if you want to call it that….but I was alive. I remember nothing, I am told the entire story. YEARS of memory are lost both short and long term that will never return and part of my brain is permanently damaged. I have 2 small boys that were 5 and 7 at the time. Countless memories of their childhood are forgotten, I need to look at pictures and hear stories to fill in the blanks. That is the most painful thing a mom can go through, part of me died that day. I was put on 4 anti seizure medications and was later diagnosed with “Epilepsy”, then it began to register this was real. I am told I am medical miracle and should have died.
A week later I came home grateful to be alive but barely functioning. My body couldn’t balance or stand straight without holding onto something. I couldn’t read, write, or find the right words to use. The ability to concentrate and process information was very difficult. Sleeping was all I wanted to do, I cried all the time and became depressed. All I wanted was to be alone. I was afraid and embarrassed to see people and not know names or even recognize them. Everything became scary to close friends and family around me that I was never going to be whole again. I asked every Doctor over and over how could this come about? How could my world could turn upside down and come crashing down without warning? I am a 40yr old mom with 2 little boys, this can’t happen to me.
I sat with my mom or husband and went over that entire day, thought through the month and week more times than one can imagine. NOTHING ABNORMAL… Then it hit me!!!! I had a fever that week, was feeling a lot of anxiety, very manic, scattered all over the place doing 100 things at once and not taking a breath. And there it was, the only thing different done that afternoon was have my IUD taken out! This was 12 hrs before everything happened, ironic don’t you think? So I began researching and googling online: “Mirena IUD and Seizures”. Thousands of women came up just like me in blogs, forums, stories, and court cases. I reached out and spoke with hundreds of other women, all similar stories. I have called several lawyers because I have seen TV commercials about this particular IUD and the problems it is causing. There are over 140,000 cases in Federal Law that are being tried now and finding out how harmful the Mirena IUD is. There are hormones in it which I thought would be great and the Dr’s did too. They said if the period comes to a stop the body needs hormones to replace the deficiency, apparently not. We produce enough!!!!! With Epilepsy, there are triggers as to what may bring on a seizure. Mine is the time of menstruation, another coincidence.
There was not enough research, testing and studies done on The Mirena IUD. Bayer refuse admit to any complications with the device. Too many stories and cases are showing grounds of truth and evidence about the serious problems the Mirena is causing. A close friend of mine said Faith: “Think about it, if you take the Hard Drive out of the computer, it is totally shutting down”. I will never forget that analogy as long as I live! It was like Toxic Shock Syndrome to the body. They scared us so much while younger in regard to the connection tampons had with TSS, what about the concern of anything else? How about all the problems now with vaccines and other drugs? I know my body and that this is why my life changed, too coincidental. I only had the Mirena IUD taken out that day, the only difference, the only change and within 12 hrs!!!
Please women, girls…RESEARCH!!!!! Don’t just put a foreign object in such a sacred area without complete facts, there are other alternatives. You only have one body, take care of it! I consider it necessary that education and awareness be increased to improve people’s knowledge about Epilepsy. Understanding the disease gives the skills to help those who need it. Living with this disease is life-changing and emotionally difficult. I cant drive, I am scared all the time, its 4 years now and I still have seizures, Im hoping for a certain surgery. Sharing my story about the Mirena IUD and what I believe its results were to my body, my life are my obligation. If we don’t have our health, we have nothing!

If anyone has experienced anything similar...PLEASE!!! Let us find a lawyer, someone needs to take responsibility. I will speak, I will do anything!

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