If you want your brain to work well, you’ve gotta be good to the rest of your body too.
If you’ve been following along recently, you’ve probably noticed that my Crazy Lady diagnostic status is up in the air. Well, not exactly – everyone still thinks I’m crazy, but after more than two years, the docs still haven’t figured out what’s going on. Sad but true.
When I started this blog, my diagnoses were Bipolar Disorder II and Attention Deficit Disorder. Earlier diagnoses included Major Depressive Disorder (Recurrent), and Anxiety Disorder NOS (not otherwise specified). More recently, I was handed Premenstrual Dysphoric Disorder (aka Depressive Disorder NOS). Mood Disorder NOS shows up on my test orders, but Bipolar II is still on my therapy slips. NOS fits nicely, I think, since it basically means “something’s definitely screwy but we don’t know what.”
The lack of diagnostic certainty around the mood disorder used to bother me, but I basically don’t care anymore so long as I get what I need (as if). However, unlike the mood-related brain cooties, the ADD Dx has 100% agreement from every single clinician. Not once or twice, but five times, and verified by computer-based testing. So that diagnosis is sticking. I wish the rest were as clear.
The bottom line is that with so much uncertainty, I’m really not comfortable with my blog tagline anymore – “Bipolar bird tells all” hardly seems to capture the crazy properly and I’m a stickler for truth in advertising. Plus it was never really that good of a tagline.
Which leads me to announce my first-ever blog contest: help me craft a new tagline! Your very own clever/snarky/witty words could grace the header on my successful, well written, attractive (smartypants crazy) blog!
- Submit as many taglines as you like via comments on this post.
- If you put more than one tagline in a comment, they must be numbered. Sequentially. With integers.
- Reader support for submissions will be taken into account, so reply with your +1 (or whatever) on taglines you like. Vote early and often!
- Taglines must be three to six (or so) words long, in English, with no line wrapping.
- Spelling and grammar matter. Incorrect use of apostrophes is unacceptable under any circumstances. Punctuation should be avoided unless necessary for cleverness or clarity.
- Submissions are open through Friday, July 25; finalists will be announced on Monday, July 29 (probably with a poll for voting).
- The winner/s will be announced on Friday, August 2.
- In the event of temporary insanity (ha!) decisions will be delayed until I’m able to make sound judgments and rational comments.
- The winning tagline author will be credited and linked on my “About” page, if so desired.
- If y’all are incredibly clever, there could be more than one winner.
- I have the right to censor anything I feel is inappropriate.
- I will make the winner a prize.
- I have the final word.
- Play nice, OK?
Let the games begin!
When I read this story about premenstrual dysphoric disorder, “All the Rage”, it was like when I first read books about bipolar – here, yet again, is my story…a few details aside. It’s pretty convincing as a mirror of my own experience, in which what appears to be bipolar disorder is in fact premenstrual dysphoric disorder. Except the data aren’t quite as clear for me. That would be too convenient.
It’s much more likely I have a hormonal imbalance on top of a mood disorder. Plus the ADHD, of course. A recent blog post by Natasha Tracy on how a person with bipolar disorder thinks also really rang true – she describes the general tenor of my mental patterns very accurately. I have been a catastrophizer extraordinaire since I was at least 4 – I can remember episodes acute anxiety about improbable disasters for over 30 years! I never thought it all that odd, but how would I know? Anyway, those thinking patterns alone do not bipolar disorder indicate, either.
In fact, there are a lot of really confusing, conflicting details, and it has been an uphill battle to get anyone to take a look at the bigger picture before diagnosing through the lens of their own specialty. I find that after pinning so much on a diagnosis that could give some some kind of answers, after a few years what matters the most to me now is that I get the most effective treatment possible. The label that goes with it is less and less meaningful, at least until I try to talk to anyone about it.
Perhaps I’m just jaded, or in a bad spot with respect to acceptance right now. Maybe I’m right about everything, or maybe I’m wrong about everything – either conclusion sounds completely logical to me, depending on which day you ask. More likely I’m right about some of it, in whatever fashion is most ultimately ironic.
Regardless, I hereby relinquish my bipolar disorder diagnostic status out of respect for those whose symptoms better match the clinical specification. I’m OK with “mood disorder not otherwise specified” for the time being.
I now have two diagnoses that many people like to write off as medicalizing normal human functioning: ADHD and PMDD.
I invite those poor deluded people to walk a mile in my shoes. I’ve previously discussed how debilitating ADHD can be, so today, it’s all about PMDD, premenstrual dysphoric disorder (with the excessive length and defensive tone brought to you by the letter D for Dysphoria…)
Most* of what the Internet has to say about PMDD is either useless and/or underinformed, or 2) contentious opinions with no real empirical basis (which fill me with rage) from people with zero exposure to what PMDD means in real life.
Let me set the record straight(er): PMDD is not stigmatizing or simply medicalizing a normal female experience, because this ain’t your mama’s PMS. Technically, with estimated 30%-80% heritability, it’s my mama’s “PMS”, which struck fear into our little hearts as children (none of us knew that was why she went bonkers on a regular basis, of course).
In fact, calling PMDD a “severe” form of PMS is beyond insulting – the fact that the symptom lists are the same is incredibly misleading and is likely the root of much of the irresponsibly ignorant opining in the media. The general public simply doesn’t understand what “severe” means in medical terms. As the amazing Ruby very aptly put it, it’s like saying that disembowelment is a “severe” stomachache. I do not jest when I say that it can be life-threatening.
Calling PMDD a ‘severe’ form of PMS is beyond insulting… It’s like saying that disembowelment is a ‘severe’ stomachache.
There isn’t yet much research on PMDD, but what they do know is that it’s not caused by anything to do with abnormal hormone levels, like you would see in PCOS. There’s evidence of low levels of serotonin precursors – the chemicals your body turns into serotonin – and in addition to the serotonin hypothesis, the general belief is that PMDD is caused by an abnormally oversensitive physiological reaction to “normal” hormonal variation.
So I’m just being oversensitive, you might say, as though I have a choice in it. But I’m really not that stupid, folks.
I don’t like…
- Pain that forces me into a whimpering heap
- Suicidal thoughts – they scare the shit out of me
- Lashing out at my poor husband with irrational temper tantrums at the least provocation
- Losing hours at at time over some triviality that sets me off
- Being so spaced out that I can’t talk coherently, read effectively, or follow the plot on a TV show
- Spending days crying
- Putting 90% of my energy into maintaining my composure because I can’t stay home from work all the time for a week or two every month
- Losing a quarter of my life to cognitive dysfunction and emotional lability
I only wish I were making this up, but there’s actually more that I’m not going into. A hell of a lot more. I have all 11 symptoms in a bad way. And me, I hit the jackpot! I’m genetically incompatible with the treatments shown to be most effective.
- First-line treatment is SSRIs, contraindicated by CYP2D6 ultrarapid metabolizer status, plus other (5-HT) genes: severe side effects extremely likely and sexual dysfunction guaranteed. With the right allele combination, SSRIs are poison.
- Physical symptoms are treated with NSAIDs like ibuprofen, naproxen, and aspirin. For CYP2C9 poor metabolizers like me, NSAIDs are not only less effective, there’s also greater risk of gastric damage.
- One oral contraceptive has been FDA approved to treat PMDD; apparently the drospirenone in Yaz is a meaningfully different progestin. My endocrinologist says that because hormone levels are not causal, oral contraceptives won’t help. On the cognitive-emotional end, so far I have to agree, though it does help physical symptoms and that’s very welcome.
- Doctors (five so far) are unwilling to give me real painkillers because – as far as I can tell – I don’t whine convincingly or loudly enough. It’s been brushed off so many times that I expect no help from anyone when it comes to managing pain. SIX THOUSAND mg daily of naproxen only takes the edge off the cramps. That’s cruel and unusual punishment for simply existing.
- Supplements and vitamins have been shown to help – PMDD is one of the few conditions where natural/alternative treatments have been studied more than pharmacological ones. I’m taking all the vitamins already, but homeopathy is mostly ineffective for me with the exception of Indica for pain relief.
- Moving to a holier-than-thou lifestyle health-wise generally helps – with the same recommendations as for every other mental condition – sleep hygiene, uber-healthy eating, exercise, weight loss. I’ve done all of that and seen no observable improvement to PMDD symptoms, although my general health is much improved.
This adds up to a pessimistic prognosis – to date, the best treatments either don’t work, cause intolerable damage, make only tiny improvements, or are just plain denied. As far as I can tell, I’m stuck with another 20-30 years of chronic part-time hell. I’ll have to endure rapid-cycling bipolar symptoms without any real hope of remission until menopause, which will itself make things even worse until that special time is over.
So let’s do some math.
12 months x 20 years = minimum 240 dysphoric episodes before my damn ovaries give out. If I’m lucky enough to hit menopause at 55, that is. Average episode duration ~ 8 days; 240 x 8 = 1840 days = 5+ years of guaranteed suffering, on top of the usual ration we all receive, menopause, and the sentence already served. That’s what I get to look forward to.
So go ahead, invalidate me and tell me you “don’t believe in” PMDD. Tell me that you believe suicidal ideation is a normal part of the female menstrual experience – everyone you know is doing it, right? Tell me that every woman has cramps so bad she can’t stand up, and that OTC painkillers are an adequate solution. Tell me that you think it’s OK to be simply incapable of functioning adequately a quarter of the time, and for doctors to just shrug and look away as if there’s nothing they can do.
What, you don’t think that’s normal or acceptable? Funny, neither do I. And I’m not alone.
*Candida Abrahamson’s blog has the best discussion on PMDD I have yet found on the whole entire Internet (as usual!)
**For my pre-menopausal comrades, if you’re adequately comfortable with your body, a menstrual cup is far more hygienic AND ecologically responsible AND economical AND comfortable AND convenient than traditional sop-up methods of dealing with flow. It takes a cycle to get accustomed, but seriously, I will never, ever go back!
I sat down to write a post and drew a blank. The last couple of weeks have been relatively peaceful, stable, uneventful, and more or less productive. Nothing exciting to relate, and nothing much to complain about in the here and now.
The longer days and spring weather are a tonic; I just plain feel better when the sun comes out a little more often, when I’m not waking up in the dark, and when it’s warm enough to spend time outdoors (but not so warm that I have to retreat back indoors).
I said things in therapy today that felt amazing. Like, “I can’t do it all.” And then we both smiled (really big genuine smiles) because it has taken so long for me to say that, and not just say it, but also believe and accept it. After commenting that I seemed almost perky, Hippie Dude remarked,
I wish I could bottle you like this for when you’re just dragging.
I know exactly what he means. He asked if I was fixating on waiting for the other shoe to drop, as I usually do. I said, “What other shoe? I’m ignoring it. It’s not going away, but I don’t have to pay attention to it right now.” He seemed mighty pleased.
My moods have been fairly stable for the last month (a whole month!) aside from some irritability. The hormonal horrors have been muffled or muted or entirely absent. My system still needs a couple months to “settle in” but if this improvement sticks around, I’m going to declare it a miracle. I’m actually letting myself get my hopes up.
The Yaz seems to be stabilizing the hormonal layer of my mood issues, so we’re further reducing lamotrigine to 100mg. Three months ago I would have laughed and then cried (all day) if you’d said that I’d be titrating off Lamictal this spring. It’s terrifying, in a really complicated way, to let go of a drug that has served me well. But the idea of being free of it – well, that’s quite a carrot.
It’ll probably take the rest of the year to perfect my morning cocktail, but it suddenly seems possible. I can’t begin to express what an enormous relief that is. Seriously. It’s sort of mind-boggling.
At least for today, I’m feeling optimistic about getting my brain cooties under control. Not every detail has been accounted for as yet, and basically only time will tell, but it seems increasingly likely that the bipolar Dx could be rescinded. Although, ironically, one can argue that PMDD is a bipolar spectrum disorder – the affective symptoms sure can match – even though the cause is clearly hormonal. The DSM doesn’t rule that out, last I checked.