Pseudotumor Cerebri And MIRENA IntraUterine Device (IUD)

[Airiin]

Hello,

My opthalmologist recently diagnosed me with PTC. I have had the headaches for almost 5 months now, all the dizziness, vertigo, nausea and fainting-feeling as well as constant diplopia now for a little over a month.

My doctor diagnosed me without doing a lumbar puncture, only the visual test, and MRI. Is this all that is required to precisely depict this disorder/disease?

Secondly, I also asked him if my Mirena (IUD-levonorgestrel) could be the culprit for the PTC, he advised me it wasn't, but all these problems have seemed to start after I had the IUD implanted in November 2007. I have read that certain oral contraceptives can cause PTC. Could this be a reasonable/possible explanation?

Thanks in advance for your help.

[misst143]

I was fine mentally and physically until having my Mirena. After a year i started changing, moods, never feeling well, headaches, i didnt know what happened to me.  I then also in March of this year started with migraines and blurred vision, that lead to seizures and hospitalization 4 times until finally i was diagnosed with PTC. It was very severe and I am sure i have vision loss, i will know if it is,in a week, or if it is still pressure , which still hasnt gone away i have lost weight even though i am not obese at all, as well as taken diamox for two months and i still have many ptc symptoms, meaning the fluid is still quite bad.  I may have PTC forever and i completely blame my Mirena.  I was completely fine until i inserted it and had it in for a bit.  Now as a single mother with 2 boys my income has diminished to almost nothing as i cant work or see, i cant run around and be with my kids and i struggle with not knowing if i can even drive my vehicle so i always have to depend on someone for help.  if anyone has these issues or something close please email me at ***@****

[StarLiteKiss19]

I got the mirena in 2007 and gained up to 50 lbs as of today... within 8 months of the mirena I was diagnosed with PTC i had complete blurred/double vision and a MRI was done  quickly because of how bad it was.  I was put on medication and had the lumbar punchture.   I thought stressed caused my weight but im starting to not beleive that since ive tried to loose weight... I go to my GYN tomorrow and I am having my iud removed..

[Airiin]

Luckily, the side-effects from the Pseudotumor Cerebri disorder I was having cleared up two weeks after having my Mirena removed.

I did gain weight from the Mirena, but I was not obsese, hence the problem my doctor had diagnosing me.

I still think there was a connection to the Mirena and the Pseudotumor cerebri, of course all the doctors I came in contact with think I am crazy, and they've NEVER heard of this happening before.. But I'm reading more and more posts everyday about this.

Word of advice: Keep seeing doctors, until one treats you with respect, and doesn't dismiss everything you're saying. I remember, I had to go to the emergency room because I couldn't see, or walk straight, and the doctor after 7 hours of waiting, told me that the Mirena was NOT to blame, stop making excuses and to just learn to deal with my changing vision and take some advil!!!!

I wish you luck in finding more people out there to help you out.

[John C Hagan III, MD, FACS, FAAO]

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[JiakuR]

I'm having this problem right now. I was also wondering if it might be caused by my Mirena. I had Mirena for over two years, but had it removed because I thought it caused to me have weight gain. After having my daughter I was still small, but when I used Mirena I seemed to gain weight that would not go away.

I had my Mirena removed last year (2009) and had a regular eye appointment at the end of 2009. They sent me to a neuro-opthamologist who diagnosed me with PTC (in the beginning of 2010). I had many visual tests and an MRI. I am going in for a spinal tap on Tuesday for them to check my spinal fluid pressure and to test samples.

I have read that a lot of women have had weight gain because of Mirena, though Mirena claims that it doesn't cause weight gain. I know weight gain is a factor for me having PTC. I also read more about PTC and was wondering if the changes in my hormone levels from having Mirena would cause it too.

Has anyone else been diagonsed and wondering if there is a Mirena connection?

[John C Hagan III, MD, FACS, FAAO]

1. The diagnosis can be made without doing a lumbar puncture.
2. Oral BCP can cause PTC but just because you're on them doesn't mean its a cause. Discuss it with your ophthalmologist and your OB-GYN.

jHC MD