The Wolves are Burning: Living with PMDD

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There’s really no reason I’m writing this post -now- except that I was sitting at my laptop thinking about the fact that I haven’t blogged in a week or so.

For some background, to ground out this entry a little. I was diagnosed with Premenstrual Dysphoric Disorder (PMDD) in 2005,  but there is strong indication that I had been showing symptoms as early as 1997 (roughly the start of puberty, in my case). This disorder, not to exaggerate, basically ran my life for a very long time and caused all sorts of, um, interesting situations develop throughout my life cycle.

It is hard to describe how PMDD differs from ‘normal’ PMS because you’re almost talking about two completely different things. Sometimes PMDD is framed in the media as ‘exceptionally bad’ PMS which I have honestly seen lead to women trying to self diagnose, or worse, downplay what those of us with PMDD go through on a monthly basis-well I cry and get annoyed and eat a lot of chocolate and bloat. I don’t require medication and other interventions.

There is such as  thing as severe PMS, and I am the first to admit that part of the issue is that we don’t talk about either reproductive or mental health with nearly the level of respect that we talk about other health conditions. But here’s the thing: women are sometimes pushed to the point of suicidal ideation with PMDD. This disorder destroys marriages, interferes with women’s ability to work, and drastically impacts quality of life. This is in large part due to the nature of the disorder itself: the easiest way to frame PMDD may be to view it as a hormonally triggered disorder more similar to bipolar than PMS. You really can’t relate this to PMS other than the fact that it hits each woman somewhere between ovulation and active menstruation each month. In order to get a diagnosis you need to experience symptoms to the level of life disruption for multiple cycles a year.

No woman will experience symptoms in the same way (I get the anger and anxiety issues, other women get intense energy shifts, other women have issues with food), or at the same point in the cycle the same way-I can actually tell when I’m heading into my flare point when I start obsessing about money. No joke. It’s almost a 100% success for me. No two cycles will hit the same way, and you can go multiple cycles with no symptoms and then hit a flare that almost shuts you down completely.

Symptoms shift over time and won’t necessarily show in every flare. Average symptoms include:

irritability ranging into anger control issues

depression

anxiety

extreme bloating

changes in interest in food

fatigue, including intense fatigue

changes in the sleep cycle

impulse control issues

A sense of a loss of control, both over self and over life events

Extreme mood swings

Physical symptoms connected to PMS such as breast tenderness

Again, this is not a full list and these symptoms have to range beyond what would normally experience with PMS, and need to reduce or end completely at menstruation [it is a very odd sensation to actually feel your hormones shift, because you can -feel your mental state change as it does-]. I also need to stress that this is not ‘hysteria’ or ‘overreacting’-while it took perhaps longer than necessary for PMDD to end up in the Diagnostic and Statistical Manual of Mental Disorders V, it is in there as a recognized disorder. It is however fairly rare, with an estimate as high as 8% of women experiencing these types of disruptions-however, not to get into gender politics, but it might be a lot higher since women are so actively discouraged to talk about this aspect of their health.

So what does it feel like to actually live like this? It is an extreme study in balancing. There is still a lot of research going on to determine base causes, whether it’s a brain chemistry issue, if it’s a hormonal issue, if it’s something else entirely. It’s knowing that for two weeks a month  I can suddenly flare and basically fall apart. It’s fighting your brain all the time. It’s a constant search for what ‘works’ for treatment.

In terms of treatment I’ve tried a great deal and have finally found a working system. Often women are put on both hormones and SSRIs for symptom control (hormones to hold your levels steady since it seems to be the shifting that sets of symptoms, and SSRIs for the mental health symptoms). Some women experience symptoms intense enough to require surgical interventions. I can’t take either SSRIs or estrogen for medical reasons, so I have developed this balance for myself:

-Buddhist style Zen and mindfulness work

-Mantra work

-Exercise [a minimum of four miles walked a day for it to work]

-dietary changes including low carbs two weeks a month and low levels of red meat

-D3

-Magnesium

-B vitamins

-Passion flower extracts

-Cognitive behavioral therapy [CBT]

-Progesterone

So basically constant walking or dancing and at least five pills a day two weeks a month. The trade off is that I have maybe one ‘bad’ flare a year now-but that doesn’t mean that the rest of the year is awesome, it just means that I’m not waking up screaming into a panic attack or getting enraged suddenly.

[This is one of those disorders that impacts the people interact with the women flaring as much as it does the women themselves. I would love to get Mid to write or dictate his experiences, because he’s had to deal with some intense…shit. I have no other word for it, since being with me. He once described a time we went out in public during a flare in which I was pushed into a confrontation as ‘the time Katie rode in on a pack of burning wolves.’ It’s been called wolf week in my household ever since.]

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