birth control stroke

Migraines and Birth Control: A Neglected Stop Sign

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No sooner had we landed than my phone began to convulse with a cacophony of bells and chimes. Most of the notifications were last minute details about the live broadcast that brought me to town. In one voice message, a coworker informed me that the producer cancelled our pre-production dinner meeting because of her migraines. He added, “When she eats certain breads, it triggers her headaches.”

This happened early in my research on hormonal contraceptives, but I had read enough to know that birth control could cause migraines, and women with migraines were at a higher risk for strokes. I also knew that doctors at the Nelson Pill Hearings testified that birth control pills affect the way a woman’s body metabolizes carbohydrates in myriad ways. I had no idea what the mechanism of action could be, but at that moment I would have bet my children’s milk money that our producer was on hormonal birth control, and I intended to ask her about it.

This was my client’s client. I wondered if it was safe to broach the subject of birth control with her, but I knew the answer before I could even fully form the question in my head. I wouldn’t be able to forgive myself if she ever had a stroke, and I hadn’t warned her.

The next morning she felt better and showed up for the load-in. When no one else was around, I asked some questions about her headaches, ending with, “I’m curious, did you start getting migraines after you began birth control?”

When you ask a question like that, you know there’s a better than zero chance the reaction could be negative. Thankfully, not even a glimmer of disapproval flashed in her eyes as she replied, “Oh no, I took The Pill for a long time before I had my first migraine.”

I said, “That’s still after you started.”

She laughed it off as a silly question. However, after sleeping on it, she approached me the next morning, “You know, you may be onto something. I hadn’t thought about it, but my migraine symptoms did get a lot worse when I switched birth control brands.”

Connect the Dots: Birth Control and Migraines

The correlation between birth control and migraines has been known for decades, as has their connection to an increased risk of stroke. However, two hurdles probably play a key role in preventing patients and their physicians from making the connection in the real world today – those being familiarity and latency.

Many side effects of hormonal birth control occur as extremely common ailments, such as breast cancer, strokes, and migraines. Not coincidentally, they’ve grown even more common in direct correlation to the introduction and prevalence of hormonal contraceptives. Paradoxically, they’ve become so familiar and so unremarkable that doctors rarely look for the primary culprit that causes the migraines. Essentially, they can’t see the tree for the forest.

Some side effects, such as migraines or depression, can happen almost instantaneously. (Even so, doctors frequently miss the connection.) However, it usually takes some time for the symptoms to precipitate. This latency can hinder even the most astute physician from considering hormonal contraceptives as the likely cause of problems. I’m being generous in my phrasing. In reality, I can’t help but wonder what role fear of litigation plays in this ‘blindness.’

Ultimately, why they overlook the correlation to birth control is less important than the consequences it creates, which include dramatic under-reporting of complications. In 1970 while discussing strokes at the Nelson Pill Hearings, Senator Gaylord Nelson expressed this prescient concern:

Every time the issue has been discussed here concerning the increased incidence of this disorder or that disorder, they always end up saying, “but the statistical sample is so small that there is room for error, and we can only make sort of an educated guess.”… I am just concerned with the fact that the reporting of these side effects and their effect on the cause of death may not be related to the pill at all. (Monopoly Subcommittee, page 6419)

Dr. Herbert Ratner added his perspective (Monopoly Subcommittee, page 6743), “For the first time in medicine’s history, the drug industry has placed at our disposal a powerful, disease-producing chemical for use in the healthy rather than the sick.” [my emphasis] Yet, forty-five years later, we still have no national registry, no way of tracking patients on birth control so that scientists can conduct comprehensive etiological studies that would connect the dots and precisely reveal the consequences of hormonal contraceptives. In fact, our healthcare reporting system is so fractured we can’t even put our finger on an accurate estimate of how many women take hormonal birth control. Estimates from trusted sources range from 11 million to 18 million.

The Pill, Migraines, and Strokes

The University of Virginia student health services published a document on their website outlining the definitive link between migraines and strokes. Beyond warning that the “increased risk of stroke is amplified by the use of estrogen-containing birth control methods,” the doctors who prepared the document boldly state,

it is strongly recommended that women with a personal or family history of migraine headaches should select non-estrogen methods of contraception. [Their emphasis]

This information should be part of every ‘informed consent’ conversation before a doctor writes the first birth control script. Not to mention the many other complications that need to be discussed. This kind of warning should be the norm. Unfortunately, it’s the exception.

Strokes Redefined

It took only three generations of users for hormonal contraceptives to redefine our perception of strokes. A young women starting on The Pill today may not even realize that when her great grandmother began birth control, strokes were considered an old person’s disease.

But, strokes aren’t just for grandparents anymore. A recent article in the Washington Post leads off with this troubling statement about strokes in young people:

In a study released Wednesday in the Journal of the American Heart Association, researchers found that between 2000 and 2010, hospitalizations for ischemic stroke, the most common type, dropped nearly 20 percent overall – but among people ages 25 to 44, there was a sharp 44 percent increase in the rate.

There are a couple of other interesting facts later in the article – or rather, one interesting fact, and another made interesting by its glaring omission. The first comes from a description of the study:

The data analyzed includes information on 8 million hospital stays and came from the Nationwide Inpatient Sample, the largest publicly available database in the United States on these patients.

In stressing the importance of a large database, the author underscores the necessity for a national registry to track patients so that important lines can be drawn. Of course, the second part is that the lines actually need to be drawn. Amazingly, here’s what the Post article says about what might have contributed to the increase:

Doctors attribute the apparent rise in strokes among younger adults to the same lifestyle risk factors traditionally found in older patients, such as obesity, diabetes and high blood pressure.

It isn’t until much later in the article that they include:

Each year significantly more women die from stroke than from breast cancer — and yet many women think of stroke as a man’s disease. According to a 2015 national survey, only 11 percent of the 1000 women surveyed could identify female-specific stroke risk factors, like migraine headaches with aura, hormone-replacement therapy, oral contraception and pregnancy, particularly in the final month and postpartum.

Talk about burying the lede. Maybe women would stand a better chance of identifying these factors if journalists dared include them in the “lifestyle risk factors” mentioned previously.

Testimony Without Equivocation

The science linking birth control pills to strokes hasn’t changed. As far as I can tell, no one has disputed the correlation since The Lancet first published Dr. Victor Wynn’s study in 1966.

Pay attention to this excerpt from Dr. Alan Guttmacher’s testimony at the Nelson Pill Hearings. Dr. Guttmacher was the founding president of Planned Parenthood/World Population, and was arguably the staunchest proponent of The Pill ever to live:

We know the facts about thromboembolism. I think this is pretty uncontested. We know the facts about development of high blood pressure in a certain small proportion of patients. We know the fact that certain patients get depressed on the pill. These are the facts we are all privy to. (Monopoly Subcommittee, page 6615)

Earlier in the hearings, Dr. J. Edwin Wood explained the phenomenon that caused healthy young women to develop strokes:

One of the major contributing causes of thrombosis in veins appears to be that of reduced velocity of flow of blood in the veins or relative stagnation or stasis of flow in the veins…

Studies of women taking oral contraceptive agents have led to the clear-cut finding of dilatation of the veins of the extremities – other veins as well perhaps but they have not been studied. These dilated veins carry the same amount of blood as before but since they are wider in diameter the blood flows more slowly.

The net effect of this series of events is a slowing of the blood flow during oral contraceptive therapy. This finding is distinctly abnormal and is not observed in any other circumstance in young women except during pregnancy or in the presence of varicose veins. (Monopoly Subcommittee, page 6157-6158)

The facts about hormonal contraceptives and strokes were well known in 1970, yet they somehow seem to have escaped the curriculum in today’s medical schools. It may be uncomfortable but if you know a woman who suffers migraines, don’t hesitate to ask her if she’s on hormonal contraceptives. Then, please share the facts about migraines and birth control.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was first published on November  21, 2016.

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Brain Bombs: Survivors’ Stories of Birth Control Induced Strokes

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What does it feel like to have a stroke? We have all seen TV re-enactments of stroke and some of us have had the unfortunate opportunity to witness a stroke first hand, but few of us have any real sense of what a stroke feels like in the moments before it happens. Over the last several months, we have been investigating the early warning signs of birth control induced blood clots. Stroke survivors represent the largest group within our study so far. Their stories tell us a lot about the early warning signs of birth control induced strokes. Full stories can be read here, but since few have had any experience with stroke, especially birth control induced strokes, we thought it was important to highlight the key patterns.

Does It Hurt?

One of the more interesting questions, is there pain associated with a stroke? In some cases no, the stroke appears to come out of nowhere. In other cases, there is a clear progression of head pain in the weeks, days, and hours leading up to the event.

From no pain:

Right before the stroke – I was just really tired and crabby I went to take a shower and all of a sudden I felt really dizzy. I tried to get out and lay down but I fell out of the shower instead. I couldn’t tell anyone what was wrong because I couldn’t form any thoughts or words.

…head rush, as if I stood up to fast. No pain.

My left cheek had started to feel funny. It felt like when you went to the dentist and got Novocain and starts to wear off… an irritating numbness.

I was sitting down to tie my shoe and all of a sudden, my left hand wasn’t cooperating. It was banging against my shoe…I called for my husband but my words didn’t come out right. I tried to walk to him but collapsed on the floor…I didn’t feel any pain and definitely didn’t notice any symptoms prior.

I had trouble walking down the stairs…two days later, I became extremely confused and disoriented.

I got up to use the restroom. When I got back into bed, I couldn’t lift my right leg. I tried to wake my husband, but I couldn’t speak, so I shook him instead.

To paralyzing pain:

…The headache was extremely severe, almost paralyzing. Whatever song was playing on the television got trapped on repeat extremely loudly in my head…

I felt a pain that I will not soon forget strike through my right eye and up through my skull. It felt like a white hot bolt of lightning electrocuting my brain. The horizon was bouncing when I looked across the way. Worst migraine I’ve ever had for five days straight.

I had a headache that would not quit. I had worked all day and was going to a family wake. My headache was severe and my spouse looked at me and said I was going to the hospital.

I felt a sharp pain behind my left ear followed by an intense migraine headache with dizziness, falling, nausea and vomiting.

The Lead Up to Stroke: Early Unrecognized Symptoms

If birth control hyper-activates blood clotting, surely as clots progress in size and number, especially if they are in the brain, there would be symptoms? Indeed, there are. As women, however we tend to ignore our own health, and unfortunately, so too do our physicians. So even when the pain reaches an unbearable state, and we seek medical attention, it is often dismissed.

“I may have been having transient ischemic attacks for about six months prior to my stroke…I had been having episodes of dizziness and headaches leading up to my stroke. Since my stroke I have not had any of these episodes.”

One of my legs was swollen for a month before the stroke. My stroke started in the morning while I was at work. I have chronic migraines, and at first, I thought it was migraine. After work, I went home and rested. The symptoms kept getting worse, and when I tried to get up, I couldn’t walk.

The headache started a month earlier…I also had unexplainable pain in my left thigh.

Headache responded to Tylenol for five days. Wasn’t thinking it was a stroke. Vision blurry in one eye for a few days – assumed contacts needed changing or a new eye exam. Not until speech became impaired did we jump into action and rush her to the ER.

I had a burning and throbbing sensation in my head. It was not a headache. The sensation was felt from ear to ear, around the back of my head, across the center of the back of my head. I also felt the sensation on the right side of my head, close to my ear. I felt it for about a week in January (four months prior to the stroke), then it went away. The blurry vision started at the end of February (two months prior), and by March (one month prior), the burning and throbbing was constant – all day, every day.

Electrical shock sensation down my arm. Immediate dizzy spell…Tried to get dressed and my left hand didn’t understand that I was trying to grab my jeans of the bed. I went to work. Didn’t know that I had a stroke…I wasn’t diagnosed with a stroke for six months following. They assumed I had MS. The lesion on my brain looked like MS…

Clotting Disorders and Birth Control

One of the more striking patterns that we saw across all types of clot events, was the lack of recognition that hormonal birth control is contraindicated in women who have clotting disorders. None of the women in our study were tested for clotting disorders before being prescribed the contraceptive, even when there was a family history of clotting.

“I told my gynecologist that my father had had blood clots. She said, ‘That’s not a problem. The pill is only contraindicated if YOU had a blood clot.’”

Clotting disorders, it appears, are only ever recognized after one has a clot. For some women, this medical misinterpretation is deadly.

Missing the Clot

Over and over again, we saw symptoms dismissed or misdiagnosed. With impending stroke, the pain is often attributed to migraine, but as was indicated above, the pain was far and above that of a migraine.

The gynecologist told me the pain in my leg was probably just a muscle strain and she prescribed Imitrex for the headache…The migraine medication made the headache go from dull and persistent to unbearable…Over the next two days, I would take three ambulance rides, be sent home from the emergency room twice, begin to lose control of my body, and be given a very stern lecture from a nurse who thought I needed to learn how to ‘manage my stress’.

Since the medical staff at the ER originally thought it was a bad migraine, I received narcotics and Novocain shots in the back of my neck and the base of my skull to numb the muscles.

What Have We Learned?

The more stories we review, the more clearly we recognize that as women we don’t trust our intuition that something is wrong. This is often because our concerns have been dismissed by doctors in the past, or we fear that they will be. Except for perhaps those crises that happened suddenly, there were warning signs, sometimes seemingly innocuous warnings, but warnings nevertheless. Inevitably those warnings were put aside. As women, we are taught to be tough and plow through our health issues. We go to work, take care of our kids, our families, even when in excruciating pain. I think it’s time we learn to take care of ourselves first. If something doesn’t feel right, we need to trust our instincts, and be persistent in advocating for our own health.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on October 5, 2016. We subsequently lost funding to finish this study. Nevertheless, we are still accepting stories about birth induced blood clots. If you’d like to share your story, send us a note: Write for us. Other stories and articles about birth control and blood clots can be read here.   

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I Had a Stroke From Hormonal Birth Control 

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A little over 2 years ago, on May 31st, I had a stroke caused by my birth control pill, Loryna. I had been on the pill for approximately 9 months before the clots developed. I didn’t even know what a stroke was until I was in the hospital and I kept hearing the word. Here I was 31 years old and in the hospital after suffering from a stroke.  

I was 6 months into a new manager position when the pandemic hit. We closed like everyone else. I worked for 2 days then I was off for the weekend. I woke up that Saturday and my left leg was killing me. I could barely walk, but I still managed to go back to my place of business to see if they needed any help. After work, I did some shopping and then went home because I couldn’t stand the pain anymore. I went to the ER later that day and they gave me an ultrasound. They said they found nothing. NOTHING! They were very dismissive and sent me home. 

The next morning changed my life forever. I woke up and my leg hurt even worse. I called my mom and told her what happened and told her that I wanted to go to a different ER. Things went downhill from there. I passed out and hit my head on my nightstand. By the time I woke up, my mother was there with the EMTs. I know I couldn’t breathe. I had an ischemic stroke and pulmonary embolism. The clot went up my leg, through my lungs, across my heart, and into my brain. I was in the hospital for a week. 

As I said before, I had no idea what a stroke was before this! I kept hearing it when I was in the hospital and they said my birth control, Loryna, caused the stroke. I also found out that I have a clotting disorder. I would think my doctor would have tested me for a clotting disorder before prescribing birth control, but I guess they don’t do that and they don’t tell women about the risks. I didn’t know that my birth control would give me a stroke. Think before you decide to get birth control. The birth control I was taking had low hormones, but I still developed a clot that led to pulmonary embolism and a stroke. 

I learned the hard way that doctors do not take the symptoms of blood clots seriously. I knew something was wrong, but I was sent home from the ER. If you feel like you have developed a blood clot from hormonal birth control and are being pushed away at your doctor’s office or ER, go to another one immediately. It could save your life. 

It has been just a little over two years since my stroke. The stroke affected me in many ways. I have issues with my speech. I had many panic and anxiety attacks that I still suffer from today. I was depressed, lost the best job I have ever had, and my confidence went right out the window. 

My stroke was pretty severe but they said because of my age and how healthy I was overall, I survived. After the stroke, it took a lot of people to convince me that I could do anything, as long as I put my mind to it. My first job was at a beauty supply store and currently, I’m working as a receptionist for a great company. They say in therapy that after you have a stroke, you are always recovering. I find that to be very true.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Photo by Marcelo Leal on Unsplash.

Birth Control Fatalities Show Unexpected Characteristics

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Over the better part of the last year we have been collecting data about birth control induced blood clots. This work is part of a multi-phased project to determine a more realistic appraisal of clotting risk than those currently marketed by industry. We know that the synthetic hormones used in birth control increase blood coagulation factors by 170% and decrease anti-coagulation factors by at least 20% in all women who use these products. What we do not know is why some women develop clots relatively quickly after commencing with these medications and others can withstand the changes in hemodynamics for years, sometimes decades, before the clots become problematic.

Industry safety pamphlets tell us that clot risk is increased in women over the age of 35 years, who smoke and/or are overweight, suggesting that for everyone else the risk of clotting is minimal. Similarly, there is a recognition that women with known clotting disorders are at increased risk of birth control induced blood clots (though very rarely are these tested before commencing hormonal birth control). Beyond that however, the major medical societies routinely proclaim the safety of these medications for all women, even women with health issues that should logically preclude the use of hormonal birth control, like those with migraines, high blood pressure, and diabetes.

How is it possible that a class of medications known to alter hemostasis and affect over 50 metabolic reactions (Nelson Pill Hearings, pg. 6311) be considered safe for all, or for anyone really? Politics aside (and yes, we are pro-women’s rights, choice and health), it is difficult to reconcile the very real changes in chemistry with any legitimate conversation about safety. The chemistry predicates the clotting, incontrovertibly. Eventually, the alterations in chemistry induced by hormonal contraceptives are bound to create problems. The only questions that remain are when and with what degree of severity?

These are important questions that one should have answers in advance of deciding to use hormonal contraceptives. Indeed, these questions should have been answered decades ago, but they were not, leaving women to make these decisions based more on faith than on facts. Our mandate for this project is to answer those questions. With Phase 1, the pilot study now complete, patterns are emerging, that if confirmed in Phase 2, may flip what we think we know about hormonal birth control and blood clots, upside down. Namely, who gets clots, the over 35 smoker or the otherwise healthy younger woman? And once those clots develop, who is likely to survive them?

What We Found

Contrary to what we expected, the results from our study showed that it was younger, more active women who developed clots in general, but also who subsequently died from those clots. Our sample size was small and these trends may change with the larger sample size anticipated in Phase 2, but for now, our results are in direct conflict with the stated risks. The women who survive blood clots were older, less active, heavier, and had more cumulative health risks than those for whom the clots were fatal. In addition, NuvaRing was proportionately more likely to correspond with blood clot fatalities than any of the other contraceptive methods.

Why younger women were more likely to clot and subsequently die from blood clots is not yet clear. Clotting disorders did not explain this finding. Two variables that may be indicative, include exercise and alcohol use. Overall the younger women were more active and in the deceased group activity levels were significantly higher than in the survivor group. Similarly, alcohol use though low overall, was higher in the deceased group as well. Both of those variables are known to favor clotting dynamics; then again, so too are smoking and obesity and neither of those variables was significant. Similarly, it is also possible that NuvaRing was uniquely involved, either because of the progestin and/or because of the route of administration. Since NuvaRing tends to be favored with younger women it may be a factor in the younger ages of those who perished. With the larger sample size anticipated in Phase 2 of this project, we’ll be able to more fully delineate these risks. For now, the results tell us that what we think we know about hormonal contraceptives and clotting may require re-evaluation. Described below are the study details.

Birth Control and Blood Clots Pilot Study Results

General Information

Phase 1 of the research involved collecting survey data and case reports from women who have suffered from blood clots while using hormonal birth control and from family members of women who died from birth control induced blood clots. The survey was advertised via social media and respondents completed the survey online. Case histories were collected online and included phone interviews. The final sample included 87 completed surveys, including 77 self-reports and 10 surveys completed by a family member of a deceased woman. This was from a larger pool of 125 partially completed surveys. Case histories were collected from 26 women or families and continue to be collected as part of the second phase of the project.

Demographics

  • Average age at diagnosis of blood clot: 31 years (range: 15-52)
  • Average duration of birth control usage at time of clot: 8.52 years
  • Race/ethnicity of respondents: 90% Caucasian

Type of Event: Primary Diagnosis

  • Pulmonary Embolism (PE): 33%
  • Deep Vein Thromboembolism (DVT): 19%
  • PE plus DVT: 16%
  • Stroke: 44%
  • Peripheral Artery Disease: 3%

Which Contraceptives Are More Dangerous?

While the small sample size and the possibility of an availability bias in participant recruitment precludes answering this question with confidence, the early trends suggest that the NuvaRing and the drosperinone-based oral contraceptives may pose a higher risk for thrombotic events and NuvaRing may pose a higher risk for fatality. Notably, a significantly higher proportion of the women who died from blood clots were using NuvaRing at the time of their clot than those who survived, 66.7% versus 19.2%, respectively [ X2(2, N=87) =9.985, p = .007]. As the sample size increases in Phase 2 of this project, these data may change and results will become clearer.

  • NuvaRing (etonogestrel) -21
  • Drospirenone based oral contraceptive (Yaz, Yasmin, Ocella) – 15
  • Levonorgestrel based oral contraceptive (LevLen, Seasonale, Amethia, Lovara, Microgynon, Camrese) -12
  • Norethidrone base oral contraceptive (Loestrin, Microestrin, Gildess, Estrostep, norethindrone, micronor) – 15
  • Norgestimate based oral contraceptive (OrthoTriCyclen) – 10
  • Desogestrel based oral contraceptive (Marvelon, Viorele, Mircette) – 7
  • Cytoproterone based oral contraceptive (Dianette, Diane) – 4
  • DepoProvera shot – 3

Risk for Clotting: Stated Versus Actual

We know from the chemistry that all hormonal contraceptives induce system-wide changes in hemodynamics. From this standpoint, one would expect that all women who use these medications would develop clotting issues at some point, that longer duration increases risk, higher dosages induce clotting more quickly, and additional health risks expedite the time frame to clotting event. These trends have not been born out with any consistency in the decades since the associations were first observed, suggesting that how we look at the risk factors for clotting may be incomplete or incorrect. Some of our preliminary data suggest that the marketed risk factors are not as clearly impactful, from a population standpoint, as expected. That is, the commonly stated risk factors occurred in very small percentage of the test sample suggesting that other, yet to be identified variables may contribute more heavily to risks.

All contraceptive risk labeling includes four primary risk factors: genetic clotting disorders, obesity, smoking, and age. Absent those risk factors, contraceptives are marketed as safe.

Genetic Clotting Disorders

  • Only 9% of the total sample had a clotting disorder, all identified after developing a clot and there was no significant difference in the proportion of women with clotting disorders between the groups.

Obesity

Obesity was measured using the body mass index (BMI) calculation. A BMI of greater than 25 is considered overweight and one greater than 30 is considered obese. It should be noted, however, that BMI calculation, though a standard measure, has several limitations including overestimating obesity status in athletic, highly muscular women. Overall, the women tended to be overweight, but not obese, with a large variability in weight across the sample.

  • The average BMI for the sample was 28.33, SD=7.6
  • There was no statistical difference in BMI between the women who survived and those who did not, although the average BMI of the women who died tended to be lower (M=25.27, SD = 2.6) than those who survived (M=28.8, SD =.87).

Smoking

  • Only 17% of the study sample had ever been smokers
  • Only 8% of the women were smokers at time of their clot crisis
  • 75% had never been smokers
  • There was no statistically significant difference between the proportion of women who smoked, developed blood clots, and survived, and those who did not.

Age

  • Risk literature emphasizes that women over 35 are at greatest risk; however, in our survey population the average age of women at the time of their blood clots was 31 years; nearly 70% of the women who developed clots were under the age of 35.
  • Women who died from blood clots were significantly younger (M=24.78 years, SD =5.80) than those who survived [(M=32.5 years, SD =8.9), t(65)= 2.518, p=.014]. This is in direct opposition to what would be expected e.g. that older women would have a reduced likelihood of survival. With a larger sample size, this trend may change.

Contributing Lifestyle Variables

Long periods of sitting as would occur with extended travel is a known risk for clotting, across all populations. Early researchers noted that exercise naturally increased clotting factors and recent research suggests that alcohol use also increases the propensity to clot (in men). Additionally, one might expect the use of other medications would impact clotting and survival. As part of the pilot study, we assessed those risks to see if these variables were contributing factors.

Travel

  • 6% of the women reported extended travel in the three months leading up to their blood clots.

Exercise and Activity Level

Survey respondents rated their activity level based upon the following scale. Over half of the total respondents were somewhat to very active.

  • Completely inactive – 1%
  • Not very active – rarely exercise -40%
  • Somewhat active – moderate or vigorous intensity exercise 150 minutes per week – 34%
  • Active – moderate or vigorous intensity exercise 300 minutes per week – 22%
  • Very active or athlete- intense physical exercise 6-10 hours per week – 2.35%

When we compared the activity levels of the women who died versus those who survived another striking pattern emerged. The women who died (M= 2.5, SD =.93) were significantly more active than those who survived (M=1.78, SD =.84), [F 1, 83) = 5.274, p =.024].

Alcohol Intake

Respondents were asked several questions about alcohol intake over the three months preceding the clots. These included average days per month that alcohol was consumed, average number of drinks per day, and maximum drinks in any one 24-hour period. While alcohol consumption was relatively low over all, there was a significant difference in the number of drinks per day between women who died versus those who survived. The deceased group drank an average of 2.11 drinks per day (SD =.46), while the survivors group consumed only .65 drinks per day (SD = .11), [t(85)=4.056, p=.000].

Medication Use

A number of medications increase clotting while others may increase bleeding. How most medications interact with each other and with hormonal birth control to influence clotting is unknown. Delineating those interactions is important for women. The small sample size in the pilot study prevents us from addressing individual medication interactions. Nevertheless, we decided to assess the overall trend in medication use and propensity to clot; more specifically, whether the use of fewer medications would contribute to survivability. What we found was surprising. A significantly smaller proportion of women who died (33%) versus those who lived (67%) were using additional over-the-counter and/or prescription medication [X2(2, N=87) =10.233, p = .006].

Combined Risks

While we cannot yet determine what combination of risks predict clotting overall, we ran some preliminary analyses to see if an accumulated number of lifestyle factors increase or decrease the survivability of clots. Unexpectedly, the women with fatal blood clots had a non-significantly lower number of accumulated risks (M=3) than those who survived (M=4). The limitations of this study preclude any definitive conclusions, but this trend could indicate either that how we tabulate risk is incorrect and/or that it is simply and solely the hormonal contraception that increases the risk.

Time to Clot

One of the pervading myths surrounding birth control induced blood clots is that they develop early on. The suggestion is that if one makes it through so many months or years without clotting, clotting is unlikely. This is partly because of the substantially increased risk of thrombosis in women with genetic clotting disorders and the assumption that those events will develop at the onset of hormonal contraceptive use. We cannot yet answer the question of whether those with clotting disorders develop clots more quickly compared to women without (the numbers are still too small, only 9% of our sample reported a genetic clotting disorder). However, we can say that most women in our study developed clots after at least a year of use.

  • 75% of the women developed clots after a year or more of use

Early Warning Signs

Blood clots are notoriously difficult to diagnose as the symptoms often correspond with a myriad of other non-specific health issues. One of our goals for the entire study will be to determine early warning signs. To that end, we asked the respondents to rate the presence/absence and severity of 35 common symptoms of blood clots a month before, a week before, the day before, and the day of the crisis. Although we found significant linear trends in the escalating severity of many symptoms across time for the group as a whole, more telling were the patterns that emerged when we divided the groups by diagnosis (DVT,  DVT + PE, stroke, etc.). There we saw distinct patterns in the type of symptoms as well as the trajectory of expression and severity.

As we reported previously, when we looked at the patterns of early warning signs of pulmonary emboli, we see two, possibly three, trends emerging. In some women, pulmonary emboli seem to appear suddenly with few if any warning signs. In other women, symptoms either increased over time or waxed and waned (or both), sometimes for months (as reported in the comments section), until reaching an apex of severity. For the latter group, the waxing and waning seemed related to the movement of the clot(s) from the periphery to the lungs. That is, the localized pain, swelling, and temperature changes, either in the legs, pelvis, abdomen, or collarbone regions, would be severe for a week or a month before the event and then dissipate entirely, only to re-emerge as the crushing pain associated with the pulmonary embolism. We will be reporting more details in subsequent articles, but preliminarily, the data and the personal accounts suggest the possibility that PEs may be preventable, if the signs of deep vein thrombosis (DVT) are more readily recognized.  With the larger sample size in Phase 2, we may be able to delineate these trends more fully.

Medical Inattention and Dismissal

Among the more disturbing findings was the complete disregard for even the most basic but well-known contraindications when prescribing these medications (age, smoking, and family history of clotting). Also troubling was the dismissal of symptoms by medical professionals once the crisis became imminent.

Ignored Contraindications

If clotting disorders, age and smoking are known risk factors, we would expect those risks to be identified prior to the prescription and in some cases, prevent the use of these medications entirely. This does not appear to be the case.

  • Only 1% of women were tested for clotting disorders prior to receiving the prescription, even when they reported a family history of clotting disorders.
  • 33% of our sample were over the age of 35 at the time of their blood clot crisis; 19% were over the age of 40 and the oldest was 52 years of age at the time of the clot – well past the age when hormonal contraceptives should be used.
  • 8% of the sample population were smokers, smoking is reported as contraindication for hormonal contraceptive use.

Medical Dismissal

A review of the case stories and the comments sections within the survey reveal that a good percentage of women recognized something was wrong, sought medical attention, but were dismissed and sent home, sometimes repeatedly and sometimes over a period of weeks and months. It was often not until arriving via ambulance that the severity of the situation became apparent. Even then, the case stories suggest that the physicians seemed to place the possibility of a birth control induced clot low on the diagnostic differential. Blood clots must be ruled in, rather than ruled out. This is something that has to change.

Final Thoughts

These results, while preliminary, show striking trends; namely that younger, more athletic women may be at a higher risk for clotting and clotting fatalities. To fully delineate and validate these trends we will need more data. If you or someone you know has suffered from a birth control induced blood clot, please encourage them to participate in Phase 2 of our study.

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Transient Ischemic Attack While Taking Birth Control Pills

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I was 24 years old, married, and had moved into our first house the summer before. I was healthy and active. I had even completed a marathon the year before, though that had been a big stretch for me with LOTS of training. I’m active, not an athlete. Being healthy, I did not expect to have a transient ischemic attack–a precursor of a stroke.

It was April 2005. I had been married 3 months shy of 3 years and had been using oral contraceptives (ortho tri cyclen) for almost exactly 3 years. I loved being on birth control – it made me feel grown up, I had clearer skin, and super easy periods. No one had ever told me that I wasn’t getting an actual period on oral contraceptives, that is was just a withdrawal bleed, because my body was no longer making my own hormones. Had I known that plus the risks, I would have looked for alternatives. But none were presented to me when I went on the pill in April 2002.

A Terrifying Episode

It was an early morning in April 2005, around 6am. I was just about to head out the door for work and was sitting down to tie my shoe. I clearly remember holding the “bunny ear” with my right hand expecting my left hand to follow protocol and loop around, a simple task repeated mindlessly thousands of times. But my left arm just swung into my shoe.

I remember thinking how strange and alarming that was, and tried again. But my left hand swung again into my foot like a pendulum swinging from the shoulder, no control or response from my fingers, wrist or anything below my shoulder. Concerned and a bit afraid I called for my husband, but my words didn’t come out right. They were muffled and my voice was deeper, without enunciation or clarity. I stood to go to him but collapsed on the floor. I didn’t feel any pain and hadn’t noticed any symptoms prior to the episode but it was all very terrifying!

The Diagnosis: A Transient Ischemic Attack

It was over quickly, in less than 30 seconds, and everything went back to normal. However, I went to the ER because I had absolutely no idea what was going on. They did a variety of tests, not all of which I remember now. I do remember an ultrasound of my heart and a CT scan. After release, I was referred to a neurologist, had an MRI, and some procedure where they went down my throat with a camera to look at my heart. Overall, I feel like all the doctors did a great job of ruling out every possibility.

I can’t remember when the final diagnosis was reached, but it didn’t take too long. It was diagnosed as a transient ischemic attack (TIA). A TIA is just like a stroke, where a blood clot blocks a blood vessel in the brain, except with a TIA that the blockage is transient and goes away on its own. These episodes serve as a warning sign that a stroke is going to happen. The doctors told me to stop taking birth control and to be wary of any hormonal replacement/interference in the future. I have stayed clear since then and have never had anything of the like happen again.

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.

Stroke on the Birth Control Pill at 21 Years Old

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Please be patient, my spelling and writing are difficult since my stroke. I should back up a little bit though. I started the birth control pill when I was 17. Partly, I was dating a guy and it was really serious, but also everyone else was taking it, so it seemed like the right thing to do. I was overweight a little when I first started taking the pill but gradually that got worse. Oh well, right?

I was on the pill the entire time I was in college. During that time, I was very stressed with different things: school, my boyfriend, being overweight and trying to figure out what to do with my life. I was 21, and I had one quarter left until graduation. At this time, I was taking Ortho-Novum 1-35. I had my stroke while I was on spring break. I was at home visiting my family and friends. It was March 27, 2005.

My boyfriend and I had a fight the night before so I was grumpy that morning. I hadn’t slept well.  My mom thought maybe I was getting sick because I was acting very tired. Around 10 am I went upstairs to shower. I got very dizzy in the shower and so decided to get out and lie down but instead I fell out of the shower.

My parents heard me fall and rushed upstairs. I remember my parents knocking on the door and my mom covering me with her robe. And my mom telling my dad to call 911. All I could say was “I don’t know, I don’t know “ over and over again when someone would talk to me. The paramedic saw my birth control pills on the counter and said he thought I was having a stroke. I don’t remember much after that, except going down the stairs on the stretcher and feeling like I couldn’t breathe as they intubated me in the ambulance. Then nothing.

I went to Harborview Hospital in Seattle and they were amazing. They saved my life. I had a very large stroke and at first the neurologists weren’t even sure I would survive. I was in intensive care for a little over two weeks and then in serious care for another week. I can remember waking up and thinking that I was having a horrible nightmare and freaking out when I realized it wasn’t a dream. My brain was getting swollen and they inserted a probe to keep track of the pressure. My sisters watched all this and were so scared. I had such kind nurses – one of them had a sister my age and washed my hair for me. I wish I could remember her name.

We never found out where the clot originated although the doctors did every test imaginable. All of the neurologists agreed that I should have never been on the pill and I should never take hormones again. All of my blood work was normal. My only risk factor was that I was overweight, and that was partly because of the pill itself. I never smoked or did drugs. So it seemed okay to take the birth control pill but it wasn’t. No one ever checked my blood pressure, weight or health after giving me the pill. I think women on the pill need to be monitored. No one really warns you about the problems with it. They just assume it will be all right.

When I was going to school, I was a history major. I was thinking about trying to get a job in one of the large archives. Or maybe I would try to be an author because I was a good writer. I thought I had found my niche. Now I have aphasia and it is so difficult to read and write. My mother is helping me to type this. When I read, I need to have the audio along with the book. Reading makes my brain so tired.

I thought I would have children, but now I am single and live with my parents. I’m pretty good with one hand but a baby would be difficult. I’m alive and walking around and many women aren’t. It’s not fair. Women need to be more aware of the danger. There really is no warning that this might happen to you. Doctors need to discuss what the risks are when prescribing the pill and follow up with appointments, not just hand you a prescription.

So, please be cautious because this could happen to you.

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.

Stroke and Coma Precipitated by Birth Control Pills

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My name is Jessica. I had been taking birth control pills for two years when I had a stroke at the age of 38. Before age 36, I’d always avoided hormonal birth control, but I was getting annoyed with the diaphragm, so I decided I’d give the pill a try as soon as I stopped breast-feeding my younger child. The first two months on the pill, I took Estrostep, and then I switched to Tri-Norinyl, because my insurance didn’t cover Estrostep.

This is how my stroke happened. During the night, I woke up to go to the bathroom, and on the way back to bed I felt my legs give out and I fell. The sensation in my legs felt neurological, like an electrical short circuit in the nerve. I knew that was weird, but I was tired, so I got back into bed and went to sleep. Hours later, I woke up with the worst headache of my life. It felt as if my head were being ripped apart from the inside. I was also vomiting.

I had trouble walking down the stairs that morning, because my legs felt as if they weren’t working properly. I called my doctor’s office, described the symptoms, and was told to go to the nearest hospital. Leaving my two children, ages 8 and 3, at home with their grandmother, my husband rushed me to the hospital.

The ER doctor gave me medicines for the pain and the nausea, and did several tests, including a spinal tap and a CT scan. At that time, we didn’t know that my CT scan showed a clot, because the hospital’s radiologist had misread it. We were told my tests showed nothing life threatening, and I was sent home with a diagnosis of possible migraine.

Two days later, I became extremely confused and disoriented, and my husband brought me back to the hospital. At that time, the ER doctor told him my CT scan had been read by a second radiologist, who had discovered that I had a massive blood clot in my brain. I was admitted to the hospital immediately and given the powerful clot-busting medication TPA, to save my life.

The next day, I had a brain hemorrhage, stopped breathing, and went into a coma. The doctors had no idea whether I would ever wake up. After six days in a coma, I did wake up. However, I was unable to move my arms, legs, or neck.

After nearly a month in the intensive care unit, I was transferred to a rehabilitation center. Over the next two and a half months, I made great progress, first holding up my head, then sitting up, then standing and, eventually, walking with a walker. I continued to undergo physical therapy and occupational therapy for a few years, and then began exercising on my own to build strength in my previously paralyzed muscles. Today, I am able to walk with a standard cane and two ankle-foot orthotics (ankle braces). I can even walk without the cane when I am at home, as long as I wear the ankle braces. (I still use the walker whenever I walk without my ankle braces.)

Doctors have done every test imaginable to try to figure out why I developed a clot in my brain. They tested for all known genetic clotting disorders, since I do have a family history of clots, but all the tests were negative. I have never been a smoker, and my blood pressure has always been normal. My cholesterol and my weight were also normal at the time of the clot. Doctors told me my only risk factor was birth control pills.

Today, I am very grateful to be alive. My stroke definitely could have killed me. I want to warn other women to avoid birth control pills and other forms of hormonal birth control. Safer methods exist, and the convenience of the pill is not worth risking your life. Women’s lives matter.

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.

Severe Heart Attacks While on Birth Control Pills

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My name is Kristyn. On August 19, 2014, I had two massive heart attacks followed by 20 more. This began my medical nightmare that resulted in a heart transplant, losing my right leg above the knee, and many months in the hospital that included sepsis and almost dying from pneumonia.

I had been on birth control pills and the NuvaRing in my early twenties without any problems. After I had my son, my periods were very irregular so I went back on the birth control pill (Gildess FE). Within a week or two of starting the pills, I began to feel unwell. I had no energy at all, and I was spotting. My hands had also been going numb, on both sides. I called my gynecologist twice to discuss my symptoms, but was told to keep taking the pills, and that things might improve.

I was at a kick boxing class, when after class I started feeling weak and dizzy with significant tunnel vision. I walked back into class to get a ride home, but I didn’t make it far before I had to lie down. An ambulance was called and on the way to the hospital I had 2 heart attacks. As they tried to reestablish my heart rhythm, I had 20 more heart attacks. I also had a stroke during this time, caused by the heart attacks. After being defibrillated 13 times my heart function was at 5%; my heart had basically been fried by the defibrillation.

The doctors put me in a hypothermic state and helicoptered me to Cedars Sinai, where I spent the next 6 months. Before I had been transferred, the doctors had tried to put me on extracorporeal membrane oxygenation (ECMO). This is used in people who don’t have enough heart or lung function to get oxygen into the blood. In attempting this, a needle that was too large was used in my leg. This shredded the artery and the muscle, and I lost the blood flow to my foot. This resulted in gangrene in my foot, and by the time I was booked into an OR in Cedars Sinai, the gangrene had spread up to my knee. Therefore, my leg had to be amputated above the knee.

I was found to have blood clots everywhere. In addition to the clots in my heart that caused the heart attacks, and the clot in my brain that caused my stroke, I also had clots in my leg, pelvis and neck.

While I was waiting for a heart transplant, I became septic. After surviving this with the help of an experimental drug, I became sick with hospital-acquired pneumonia, and once again, almost died. Five other patients in the ICU also had pneumonia, transmitted through hospital staff, and two of the other patients actually died. I survived, but was on a ventilator for two and a half months and had to learn how to breathe again.

While waiting for a heart transplant, I couldn’t be on ECMO for the whole waiting period, so I became the only patient in Cedars Sinai to ever have both a left ventricular assist device and right ventricular assist device (LVAD and RVAD). These are surgically implanted, battery-operated mechanical pumps that help fulfill the functions of the heart. I eventually received a heart transplant from a 19 year old college girl named Chandler.

I was extensively tested for blood clotting disorders and rheumatological disorders to try to explain how this would have happened to me. However, all the test results came back normal. It seemed that my only risk factor was the birth control pill.

Before the heart attacks, I was living a normal life with my family. The week before, I was hiking with my husband, parents, and two and a half year old son. The day of my episode, I had five other children at my house for a pool party. Hormonal birth control turned my life upside down.

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.