Intracranial hypertension (IH) is a serious and potentially disabling neurological condition. This condition is also sometimes called by its older names, benign intracranial hypertension or pseudotumor cerebri. The link between progestin-containing birth control implants, such as Norplant, and IH, has been known for almost 20 years, but this issue started to receive more attention when research linking IH to use of the Mirena IUD was published.
What is Intracranial Hypertension?
Intracranial hypertension develops when the pressure of the cerebrospinal fluid (CSF) is too high in the skull. CSF is produced in the choroid plexus area of the brain and under normal circumstances, flows over the brain and is absorbed into the venous blood system. CSF is produced continuously, so normal CSF pressure in the skull requires a balance between production and absorption of CSF. Although the mechanism behind IH is not well understood, researchers believe it involves a problem with the absorption of CSF in the blood.
The symptoms of IH can vary between individuals, but three of the main symptoms are severe headaches, visual changes (papilledema), and a whooshing noise in the ears (called pulse-synchronous tinnitus). These three symptoms do not all have to be present in IH. The visual changes can result in vision loss or even blindness. Other possible symptoms include sharp pain in the arms, legs, and back, severe neck stiffness, nausea/vomiting, numbness or tingling in hands, feet, and face, depression, exercise intolerance, memory difficulties, and more.
Intracranial hypertension can be acute, in cases of head injury or bleeding in the skull, or chronic, developing more slowly. Chronic IH can occur without an identifiable cause, in which case it is called idiopathic IH, or it can be secondary to an underlying condition or medication use. Conditions that can cause IH include head trauma, stroke and cerebral blood clots, and medications include certain antibiotics, certain types of progestins (synthetic progesterone used in birth control), Accutane, and more.
Anyone can develop IH, regardless of age, gender, or ethnicity, but it is thought that women of child-bearing age are at higher risk, raising the question of how hormones may influence its development. Being overweight has also been identified as a risk factor. The incidence of idiopathic IH overall is 1 in 100,000, but in overweight women of child-bearing age, the incidence is 20 in 100,000. The incidence is increasing for reasons that are unknown, but could potentially be related to the increase in popularity of progestin-secreting IUDs like the Mirena and Skyla.
Intracranial Hypertension and Mirena
The Mirena IUD is designed to deliver a sustained dose of levonorgestrel, a type of progestin, to the lining of the uterus (the endometrium) over a period of five years. Use of the Mirena was found in a research study to increase the risk of developing IH. This study looked at reports of IH associated with Mirena IUD use in the FDA’s Adverse Events Reporting System (FAERS), and found a higher than expected number of reports. And the actual number of cases is likely to be around ten times higher, as the FAERS database is generally acknowledged to underreport the incidence of adverse effects by around 10 fold. The study also examined the risk for IH with the Mirena using a large health care claims database, and compared it to the risk of IH with two oral birth control pills. This part of the study found that the risk was similar for the Mirena and for birth control pills containing the progestin norethindrone, and the risk was lower with birth control pills containing norgestimate. More research is needed to identify the levels of risk with the various types of progestin and delivery systems (IUD vs oral vs implants). However, it is clear from this study that progestins can increase the risk of IH. This study did not address the question of whether the risk was also increased with the Skyla IUD, which also contains levonorgestrel, at a slightly lower dose than in the Mirena IUD.
In 1995, research connecting Norplant, a contraceptive implant containing levonorgestrel, to a higher risk of IH was published; however, in the intervening years, very little published research has investigated and defined this risk more clearly, despite the increased use of levonorgestrel an contraceptive implants, IUDs and birth control pills. There have been occasional case reports connecting birth control use to IH, such as this case of IH developing in a woman two days after the use of emergency contraception containing levonorgestrel, and this case of a woman developing IH after an injection of Depo-Provera (depot medroxyprogesterone acetate).
Systemic Hormonal Effects with Levonorgestrel IUDs
In the U.S., uptake of intrauterine contraceptive devices such as the Mirena and Skyla IUDs has been low relative to other countries—in some parts of Asia, over 40% of contraceptive users choose intrauterine devices, whereas in the U.S., only about 10% of contraceptive users are using IUDs. However, this number is increasing. The Mirena and Skyla IUDs are strongly promoted as having few systemic effects, because the progestin is being delivered locally.
Knowing, however, that Mirena has been linked to IH, a neurological disorder presumably not connected to local delivery of progestin to the uterus, and that Mirena has also been found recently to increase the risk of breast cancer, one must question whether in fact it is true that the effects of the Mirena really are mostly local. In fact, some research has found that the serum concentration of levonorgestrel in women using progestin-secreting IUDs can be similar to or higher than the serum concentration in women using progestin-only oral birth control pills. In addition, the concentration of levonorgestrel in tissues other than the endometrium is also similar between oral progestin users and IUD users (except in the endometrium, where it is much higher in women with an IUD).
Discontinuation rates for Mirena and Skyla IUDs have been reported to be as high as 60%, and the most common reasons for discontinuation are irregular bleeding, pelvic pain, and systemic progestogenic side effects. These systemic effects include depression, mood changes, breast tenderness, weight gain, bloating, headaches, acne, and loss of libido—effects that can be expected with serum concentrations of levonorgestrel similar to those found with oral intake. This high discontinuation rate raises the question of whether healthcare professionals underestimate the incidence of these adverse effects, and whether they are informing women of the possibility of their occurrence.
The awareness of possible systemic effects of hormone-releasing IUDs, as well as the connection to serious diseases such as IH, is extremely important. The reputation of these IUDs as only delivering hormones locally does not seem to be supported by the data. Women should be able to choose their birth control methods with fully informed consent about the full range of possible side effects, and armed with information about what side effects to be alert for and discuss with their doctors. Recognizing the early warning signs of serious adverse effects from birth control use, however, relies on our collective acknowledgement of the fact that these serious side effects can and do occur.
Real Risk Study: Birth Control and Blood Clots
Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.
Hi everyone, I had mirena inserted about 1.5 years ago and since then started having headaches and feeling dizzy. I thought it was because I was tired (my daughter was 2 months old and I have another toddler). The symptoms started getting worse, having very strong migraines with aura every week, or more often (which I had 3-4 times in my entire life before Mirena) and I went to my gyno to ask him if Mirena could be causing this, and he assured me it had nothing to do. Then I went to the neurologist. In the MRI were “indirect symptoms” of IH, so the doctor wanted to do a spinal tap. I went to the ophthalmologist and everything was completely normal. I started doing some research because it didn’t make much sense to have IH out of blue (my BMI is 18, so weight was not the issue), and I found all the articles related to Mirena and IH. Surprisingly, none of the doctors I visited knew this (i went to the gyno, neurologist, ophthalmologist). I went back to my gyno to get the Mirena removed, and he said again that won’t make any difference. Maybe it was a coincidence, but the last day I had a strong headache was the day I got mirena removed, the other symptoms also started to slowly go away. It’s been already 3 months and I haven’t had any headaches and overall feeling much better.
I hope more research will be done to have a better understanding of the effect of Mirena in our brains.
I have mirena for about 12 yrs now and never knew of this connection until last week. I went for a routine eye exam because I recently started experiencing a heaviness behind my right eye. I chalked it up to working in front of a computer all day. They said I had optic nerve swelling and rushed me to the ER. I had a lumbar puncture and an mri. I was then diagnosed with IHH and prescribed diamox. However, since then I have had whooshing/ ringing in my eyes, no real
Improvement with my eyes and severe headaches. I went to a neurologist. He believes that either my use of an antibiotic called bactrim caused this or the mirena- caused the initial IHH. My current headaches he believes is due to a CSF leak due to the lumbar puncture. So I am scheduled to have my mirena removed next week. I have a follow eye appointment to check the swelling and then another mri. I will say that the doctors at the ER Harped on my weight more than anything it was disgusting. I gained some weight these last few months .. I had a lot going on but were convinced the weight contributed to it. The new neurologist I saw was more thorough. Step 1- remove mirena Step 2- scans Step 3- new meds. We will see.
Does anyone know of doctors in New England familiar with IH that also aware about Mirena possibly causing it? Is there a way to prove it was from the Mirena? I’ve had whooshing and headaches and so many symptoms for over two years. Been getting worse and worse. Doctors said I have adrenal I sit but they don’t know why, it’s not clear and I’m wondering if the pressure in my head could cause my pituitary gland to not properly work all the time? Anyone have any input or good docs they have found in the United States?
I’m not sure if these comments are checked anymore, but maybe someone will read this and respond.
About five years ago I started going into perimenopause. I’ve had a long history of migraines… going back 20 years. I am very familiar with migraines and what they feel like. In the past five years, I slowly began having these headaches that I knew were not migraines.
These “non-migraine” headaches involve pain behind my eyes, the whoosing/pulsating sound in my ears, severe pain in my neck, and while they are sometimes mild, if I engage in any amount of activity, these will escalate up to incredible severe throbbing pain and ultimately vomiting.
My migraine meds NEVER made a dent in these. I’ve spent several years battling these, and they come in waves – I’ll have them for a few days or a week or more and then they’ll go away. They seem to coincide with other hormonal issues such as hot flashes and other things.
A few months ago I read about IIH for the first time and for the first time I was reading a description of these nightmarish headaches that have been destroying my life the past few years. I have always had a deep intuition they are connected to my hormones but my neurologist doesn’t know about hormones and my obgyn doesn’t know much about headaches, so no one will validate my perception.
anyway, just going to put this to the universe.. maybe it will help someone else, or maybe someone will respond who has gone through something similar.
Hi, my daughter was recently diagnosed with IIH. Fortunately, we were referred to a ophthalmologist who specializes in neurological disorders. He immediately recommended she have the IUD (kyleena) removed.
We still have a lot to learn about controlling her IIH but are prayerful the removal of the IUD will solve a significant piece of her puzzle.
Although I wish I was better informed of the possible ICP effects of the IUD, I’m not sure the decision would have been any different. Often times doctors lead you to believe that the risk are extremely low, that you will not be the 1 in 100,000. Doctors need to prescribe with care and include follow up exams that evaluate the whole patient not just the part of the body that drives the doctor’s speciality. Medicine has to become more holistic.
Dear Wendy,
I am writing from Germany and I consider myself another (- unnecessary! -) victim of Bayer/ pharma industry. I am 48 years old now and I got the MIRENA 1,5 years ago, my first IUD after years with oral contraception. My gyn recommended it warmly, due to “minor” release of hormones, and this would only be locally, it seemed like a simple and reliable way of contraception, well tolerated.
I suffered from several adverse effects and finally decided to have the “thing” removed 4 weeks ago, after by chance seeing a youtube video which rang in my ears as the symptomes described where just like mine! Depression, sleepless nights due to heart palpitation, strong mood swings and headaches, agression, loss of libido, etc. I did not recognizse myself during that time and felt horrible most of the time… sometimes I felt like going crazy and was in danger of not being able to work.
After some research on the internet – which I should have done beforehand, not afterwards actually – I discovered so many negative reports in newsgroups and found medical articles, mostly in English (from US websites and law firms) on the negative side effects which were actively thwarted by BAYER. Fact is some years ago they instructed a PR agency in Germany to fake hundreds of positive experience reports for Mirena! They even had to include this issue in their annual business report. I was shocked!
When I addressed my findings with my gyn, she was hesitant and told me that such findings need time to settle – the findings and studies were from 2015, by the way. But if I decided to have it removed, she would do so. The removal as such was a catastrophe anyway, I escaped a surgery.
But what struck me was the fact that a young colleague of mine (30 years old) suffers from Intracranial Hypertension. She underwent many lumbar punctures and was ill for weeks, after seeing her ophthalmologist who sent her straight to hospital due to headaches and blurred vision.
As her doctors did not know where this illness comes from – and it was supected that overweight and Mirena were accompaniments to it – they were at a loss to give her a diagnosis.
When I stumbled over the connection between Mirena + this severe illness, I told her about it and she gave the info to her neurologist. Guess what happened? He had never heard of this “nonsense”, told her not to believe such “rumours”… No comment.
Please find here two links which I found and which were quite helpful to understand:
https://www.jonesward.com/mirena-iud-can-cause-false-brain-tumor-symptoms/
https://www.drug-injury.com/druginjurycom/2014/05/mirena-ptc-iih-side-effects-levonorgestrel-neurological-conditions-cerebrospinal-fluids-problems-vision-loss.html
I wish you all the best and hope that doctors become more aware of these hormone problems, start to distrust the pharma industry and dive into the matter before letting women get their health and lives destroyed by Mirena!
Best regards
Susanne
I would suggest pushing for an MRI. I did. I have IIH. And Mirena. Newly diagnosed and wondering how this product is still legal.
Has anyone had their IUD removed and than conditions got better?
I just had mine removed today. I will let you know.
Hi! I hope your IUD removal went well. Any updates on how you feel?
I am 47 years old and have had high BP since i was 34. I had the mirena inserted over 3 years ago. My GP prescribed it as I was losing so much blood during menstruation. Since mirena, my BP increased, i gained more than 20 lbs and been having headaches. 2 weeks ago I woke up with a really bad headache and since then, I can feel this tension on my head which matches the description of ICH. My BP had been resisting meds and i have gone from one drug to 4 in 2 weeks. The tests are ongoing and so far, I have no answers. I had the mirena taken out 4 days ago. Hopefully, this was the culprit. I just have to wait and see.
I’ve had the Mirena for 6 years now.
Slowly I started getting headaches, felt as if my eye balls were being pushed out of my eye socked, felt tingling on my arms and legs, blurred vision, slurred words, felt like my brain was working in slow motion, memory was not good, felt sort of what sounded like a heart beat/gushing sound inside my head out of no where, felt super tired all time, gained weight, and was in and out of depression. I had 2 episodes where all my limbs went numb and ended in the emergency room. I had 1 episode where my migranes were so severe I had to go to the emergency room. Several times I couldn’t even get out of bed in the mornings.
I never associated my symptoms to the Mirena IUD. Something told me to look up the risks of using Mirena. All the incidents I mentioned that happend to me happended during the time I had the Mirena. I’m going to get it removed. I’m tired of living miserably. There are other ways of preventing pregnancy. Hopefully once Mirena is removed my symptoms will subside.
Did symptoms subside
Hi, my name is Nicole and I had a Mirena IUD inserted in early July of this year. I have had a spinal fusion for scoliosis when I was 13 and more recently have had 3 decompression surgeries for Chiari Malformation and had a stroke due to excess swelling after my first surgery. So I would be at increased risk for stroke and intracranial hypertension. I have more frequent and easier onset of headaches and have started experiencing sharp pains along with numbness/tingling down both arms whenever I cough, sneeze or need to clear my throat. I was recommended Mirena for my heavy and shifting periods as a safer option due to my medical history. I have just learned of the risks listed in this article and the studies that were done and because I’m having symptoms that have signaled a need for surgical intervention in the past, but are similar to the side effects possible with the Mirena, I am wanting to eliminate the possibility that it’s the Mirena causing my symptoms and will most likely be having it removed. I am asking your opinion on my case and about how long after the Mirena is removed would it take for symptoms to recede?
If my mirena was removed about 2yrs ago is it possible to still have the effects or side effects of things such as (IH)?
I don’t think so. You could still get IH, but at that point it would be unlikely to be related to the Mirena.
Yes! I started having symptoms after having mirena installed and once I took it out, things started getting better but then got worse!!
I have swollen optic nerves, vertigo, dizziness, fatigue, and pulsatile titinnus! During an episode, my arm feels numb and I start seeing halos!!
I have had the mirena for 17 months, with a consistent headache for about 14 months. About 6 months ago, my right arm began tingling during sleep and my vision changed occasionally. I saw my physician, had labs drawn and saw an optometrist. All came back unremarkable. I feel better but have become slightly depressed with the constant headache…plus having 2 children..constant noise. I came across the article a few weeks ago, needless to say, I’m having the iud removed in a week. I’m crossing my fingers my symptoms subside.
Did your headaces go away after removal? Getting mine removed today and I am just praying the headaces go away.
Did they go away I have ih and I had mine removed in April but I had 3 of them just didn’t know
Did symptoms subside
I turned 40 and had a stroke a few months later, with no risk factors except birth control…. I saw an OBGYN specialist who showed me a chart that stated that anyone who has had a stroke should only use IUDs…. but the fine print on the IUD says risk of stroke, and a friend at the local stroke center said that since my stroke was hypertensive I should avoid IUDs completely….I have fibroids so really wanted to improve my pms issues but, am so glad I found this article because since my stroke I have had depreesion and weight gain and neck stiffness and tingling hands and memory issues….. I am waiting for OBGYN doctor to call me back and explain how something that has a known risk of stroke is the best birth control option of a person who JUST had a stroke….
I am starting to wonder if I don’t have this particular problem. I’ve wondered for years but unlike most I have little or no choice in the matter. I’m not overweight but I do have leukemia and take chemo drugs. As a result I’m not allowed to take most birth control medications or use any of the methods that I’m normal when an IUD does not work. I was on Depo-Provera at two times in my life both for about nine months. Have had an IUD since January 2013 and going back to replace it in a couple of weeks. Short of a hysterectomy I have no other option but I’ve struggled with some of the above mentioned symptoms since November 2013 with a definite worsening in May 2015. Definitely intend to raise this with my doctor even if I can’t change birth-control methods. I don’t want to go through what would likely be a complete hysterectomy at 21 thank you very much. If anyone has any suggestions I would appreciate hearing about them.
I know exactly the struggle. I have been dealing with this for years now. Getting doctors to run labs more difficult than getting congress to agree. Even in the face of valid research that shows vitamin a toxicity, hormone links etc. They are quick to offer meds and surgery. https://www.jackkruse.com/cpc-6-pseudotumor-cerebri/ follow this link. I am working on his recommendations now. He really makes alot of good points and i ve not been able to prove him wrong. I am a man dealing with an issue that primarily affects women but they look dumbfounded when i suggest testing hormones. There are several labs that let you pay cash for testing without doc orders. It might be a to get answers when the medical community wont. Only do surgery as last resort. Hope this helps.
refuse to see this connection*
Thank you for this post. The doctors I’ve seen, who have done an abundant amount of research concerning IIH, always ignore the fact that I was 125 pounds at 5’3.25 and ran quite a few miles a day and ate healthy when I got the Nexplanon in me in two years prior being diagnosed to IIH. After having the BC in me for about a month, I had constant headaches, which I knew were a side-effect and ignored them. By three months, I felt a band of pressure around my head. By 6 months, I was losing my IQ, was slurring words, had a foggy brain, my brain felt heavy, and was afraid to even drive at times–I was pretty sure I had a brain tumor, but also thought I was overreacting and maybe had been out of school for too long.
I was told my headaches and pressure were “tension headaches.” After my a trip (about a year and a half after getting the BC in), I started to get the whooshing in my head. I went to an ENT who literally laughed at me, and even made fun of me for wanting to get a MRI done. He told me nothing serious was going on, that I was young and healthy. Yeah right, who just gets whooshing in their ear? I got severely depressed, and was even more sure that I had a brain tumor. I also became bedridden during this time and for about 7 months following this. I felt absolutely helpless. Eventually, when my peripheral vision started to be affected, and my MRI showed nothing, I was glued to my computer doing research for about two weeks. I came across IIH, and knew that’s what I had. I demanded to be seen to see if I had optic nerve swelling, which I did. The doctors didn’t rush to do anything, in fact, the doctor in the ER told me not to come back unless I was blind…can you believe that? If I had waited that long, I would’ve had to have surgery!
I saved myself from going blind, and demanded my BC get taken out, and at least be seen by doctors who knew what they were talking about. However, now my doctors blame me for being overweight, and tell me I got this because I gained weight (they’ve only known for 3 months and have only seen when I was fat). I tell them I used to be skinny, it’s like they don’t believe me. My next doctor I am going to I am even bringing pictures with time stamps to prove this about my weight! I had this before I gained weight, precisely about a year and a half before.
Now, my IIH symptoms, and pressure, become unbearable right before my period. However, even without losing weight, I basically have no optic nerve swelling anymore (only a little trace, not even grade 1). This isn’t supposed to happen unless I lost weight, this has ONLY been about 3 months since I’ve gotten my BC out…..coincide? I think not, yet, my doctors? They’d rather blame my weight, they refuse to this connection that is RIGHT IN FRONT OF THEM!!!!!!!!!
Please keep advertising this important information. Please keep advocating for women’s rights–women should know the serious effects BC can cause! Eventually the doctors will catch up with you/us. There will come a time when they can’t blame weight for everything and will have to search for the actual true and complicated answers.
Having the BC removed, did this correct your whooshing? Did your body heal itself? I am considering getting this removed after hearing this.. I’ve had this whooshing since I had it inserted, about a month later Mirena IUD, I’ve had it every since.. no headaches or vision issues but the whooshing drives me crazy, never had it before.. 🙁
Is there a way to test for this? I have been experiencing some of the symptoms listed below so im kinda curious if this can be prevented by any way of ia it necessary yo have the IUD removed..
Hi Zahira,
Here is some information about diagnosis: http://ihrfoundation.org/hypertension/info/C72. I would definitely raise this concern with your doctor.
Philippa