I’ve been on a quest over the past several years. I’ve been trying without success to get someone, anyone to tell me exactly what is meant when it’s said that females have more difficult recoveries from concussion because hormones are a cause. That’s it. That’s all you hear. “It’s hormones” or a variation of that. A bullet item on a slide. A mention in a list. No details, though. I’ve asked and asked and asked.

I’ve been looking for information. Noting articles when I see them. Asking in webinars, in Twitter chats, on Twitter in general – asking anywhere I could think of whenever I saw it mentioned, and when I didn’t. No luck. Noone really knows, and it just keeps getting repeated over and over again.

I also have been hearing some alarming stories from people looking for information. Tales of periods that go on for weeks since having a concussion. Periods that stop completely. So people have contacted me (moms and dads included) looking for help. Their doctors don’t know what to do. (I won’t ever say who contacts me, BTW. ) People come to me via my AllConcussion.com sites because they can’t find the help and information they need from the medical community. (Update: July 21, 2014 I’ve rebranded FightingPCS to AllConcussion, and moved all content to the new site. People continue to contact me there.)

Enough was enough. Back in December 2013, I put on my technical communicator hat and got to work researching hormones. Here it is, mid-March, and I’m finally able to publish some of what I’ve learned. I found an incredible amount of information. The more I looked at it, the more questions I had. It quickly became apparent that it is an extremely complex topic and varies considerably by life phase. I was both fully enveloped and intrigued by the topic – and upset, because the generic “it’s hormones” is clearly so inadequate. It’s an empty statement, really. It’s not enough. Not even close.

So I ask everyone, everywhere. Read through all the information I’ve found for each life phase. Realize that it’s just a start, a hint at the complexity and depth of knowledge and study needed. Most important – whenever you hear “it’s hormones” push and ask for specifics. It’s no longer enough to get away with empty phrases. Read what I’ve found, and you’ll have some specific questions you can ask. It’s time to get some answers.

On this page, I’m going to highlight some items to give you a general overview of what I’ve found. Read other pages for more details.

Hormones at Different Life Phases

At each life phase, there are differences for female hormones. I’ve set up four different posts for four phases: puberty and mid-adolescence, late adolescence and childbearing years, perimenopause, and postmenopause. Here are some of the key points for each phase. Details and sources are on the pages specific to that phase.

Puberty and Mid-Adolescence

• The average age of menarche is 12-13.
• If menarche doesn’t occur by age 16, a girl likely has primary amenorrhea
• Periods are irregular for a while
• Menstrual cycles during puberty can be anovulatory
• With later-onset menarche, it can take 8-12 years for cycles to become ovulatory
• Bone growth is mostly complete by the end of mid-adolescence; bone loss during this timeframe cannot be restored

Late Adolescence and Childbearing Years

• Motor vehicle accidents are a common cause of brain injury for those in the childbearing years
• Females may have menstrual cycle dysfunction such as Luteal Phase Defect (LPD) and Polycystic Ovary Syndrome (PCOS)
• LPD and PCOS could affect fertility
• Hypothryoidism during pregnancy could affect fetal development
• College students have a high risk of assault (1 in 5), and assault is a cause of TBI
• A sudden drop in progesterone levels during the luteal phase (the “withdrawal hypothesis”) could result in prolonged recovery
• Hormone levels during the luteal phase can contribute to PTSD, something of importance for veterans
• Females can have secondary amenorrhea for a variety of reasons

Perimenopause

• Women in their 40s remain active and participate in recreational sports
• The 40-44 age group has the highest participation rate for some sports that I reviewed
• Hormone levels fluctuate
• The menstrual cycle may change in length; there may be longer intervals between periods
• Estrogen therapy begun late in this age group might help with cognition (the “critical window”) during postmenopausal years

Postmenopause

• Falls are the greatest cause of TBIs for this age group
• Estrogen therapy may or may not help with cognition; it depends when it’s used (the “critical window”)

Gender-Specific Questions

There’s debate about whether or not there are gender differences related to concussion. I believe that there are. Hormones for females make it so. Taking that away for a moment, I think that it’s not necessarily that studies aren’t showing differences. I think it’s because of the questions. My thought is:

If you don’t ask gender-specific questions,

you won’t get gender-specific data.

Here are some examples of gender-specific questions.

Headache

In symptoms lists, headache is an item. Both genders have headaches following concussion. A gender-specific version of a headache question for females could be expanded as follows:

• Did you have a headache?
• Was it a migraine?
• Did it occur in the days right before your period started?
• Did it occur in the days just after your period ended?
• Did you have sensitivity to noise with it?
• Did you have sensitivity to light with it?

An interesting note regarding sensitivity to noise and light is what was discovered in the University of Washington middle-school soccer study. Sensitivity to light and noise were two of the top three symptoms that prolonged recovery. So while both genders might report sensitivity to light or noise, it may be causing prolonged recovery periods for females and not as much for males. That study is one example. I’ve seen that in another place as well, but don’t recall it at the moment. For questions about noise and light sensitivity, it might make a difference to dig deeper and collect additional data for females.

Menstrual Cycles

Neuropsychological tests are used to determine severity of concussion. All the baseline tests are neuropsychological tests. They’re short in length compared to full ones administered by neuropsychologists, but they’re used quite a bit. With any of these tests, though, there’s one simple fact:

You can’t track menstrual cycles on neuropsychological tests.

Because menstrual cycle  and period dysfunction can tell so much and can indicate larger serious issues, this is something that can no longer be overlooked. Tracking and reviewing menstrual cycles the very definition of gender-specificity. Continuing to use neuropsychological tests alone for studies regarding gender differences is no longer enough. You have to start tracking and including menstrual cycle information.

A perfect example of gender-specific studies and information that’s exactly what’s needed for concussion are these:

• University of Rochester study that looked at menstrual cycles
• Female Athlete Triad research: there’s quite a bit of information in studies that have been completed over recent years. There’s data on menstrual cycles and physical activity, on hormones, and more. This is a place to start looking.  This is the type of research that’s needed for concussion.

Finding the Root Cause

As a technical communicator (aka technical writer) you’re able to learn and write about many topics. For a number of years before my accident, I worked for a large corporation in the Seattle area. One type of documentation I worked on was OSHA safety manuals: emergency action plans, hazard communication, asbestos, hearing conservation – those types of topics. Safety is the most important focus at that company, and in manufacturing facilities in particular. If there were ever an accident, there were detailed procedures for finding out the “root cause” of the problem. You had to keep digging until you found the root cause. Anything less was unacceptable.

Coming from that background, I look at all the concussion research for females in particular and ask: what’s the root cause? Neuropsychological tests don’t tell you that. I think they identify results, not causes. That’s why I think it’s necessary to keep digging, to look at those gender-specific questions I’ve noted and to look for more. So to researchers, I say this:

Keep digging. Go back. Get more information. Find the root cause.

I think that hormones and endocrinology are keys to the puzzle. Those are places to start looking at in detail, IMO. They’re areas which haven’t been reviewed as much yet, I don’t believe.

Note: I learned much about decibel levels, health effects, and noise mitigation when I worked on the hearing conservation manuals. That’s one reason noise is of high interest to me. That it’s common for concussees to have noise sensitivity, and perhaps for females in particular, I think more could be done. Look at my noise posts for more information about that. The main one is Noise as Cause of Concussion Symptoms: The Case for Further Study. I think it would also be helpful to talk to Industrial Hygienists about noise.

Female Athlete Triad

There are similarities between the Triad and concussion. Plus there’s an important aspect of birth control use, one which may negatively affect bone mineral density (one of the Triad issues). It’s something that I think is used for menstrual cycle regulation after concussion, but I’m not sure. There’s an incredible amount of data and studies with regard to menstrual cycles and hormones because of the Triad work for many years. Obviously, this is also of great important to athletes. In any case, this is important to look at. I’ve described that in more detail in this post, so look at that, definitely.

The Female Athlete Triad and Concussion Recovery

Conferences

Conferences, summit meetings, and other professional and public gatherings are increasing in number. That’s great! There isn’t always a gender-specific discussion item on the agenda, however. At this point, I think it would be good to start ensuring that there’s at least one session for females specific to hormones and menstrual cycles. Professional and public events are opportunities to share and learn. People might have questions. Ideas. Solutions. When it comes to hormones, I think it’s very important to have sessions regarding this topic.

If you don’t include sessions devoted to female concussion

at conferences, summits, and workshops

to enable discourse on this topic,

you’re virtually assuring that no progress will ever be made.

What’s Next

Research. Focus on hormones. I hope! Each age group has unique characteristics and needs regarding hormones. Hormones can impact growth, fertility, fetal development, cognition in later life, and more. Endocrine and pituitary issues are known to cause problems after TBI. That has not been looked at enough. Get endocrinologists involved more. When you research, you have to look at the entire picture. Look at all the life phases. Look at what research has been completed in other areas. Start digging.

Everyone, everywhere: advocates, patients, caregivers, journalists. Press for details when anyone says “it’s hormones.” It’s time for answers.

It’s no longer enough to just say “it’s hormones.”

It’s no longer enough.

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