Cortisol & Childhood Trauma: Medical Mystery Update

I didn’t want to post about this until something was working; it was too hard to wait, while doctors talked to each other and labs came in and the pharmacy waited to get a medication in stock. My labs show some evidence of over-active thyroid, but the endocrinologist I saw surprised me by looking for, and finding, low baseline cortisol levels. Our first appointment was long, because she asked for my life story behind the bare medical facts. It’s long, especially when my dad’s mental health comes up. I had never seen an endocrinologist before, so I just went with it. I wasn’t surprised when she sent more for more labs and told me to come back after she had the results.

I was surprised when my next visit revealed her suspicion that my diagnosis would actually be low cortisol. She gave me a three-page handout on low-dose cortisone treatment for this, but told me she would wait to call in the prescription until after I had done one more cortisol test. This is a blood draw that has to be done before 9:00 am, while fasting (just putting off breakfast and no late-night snacks). I cracked a joke about torturing me with all these early tests.

“I am not a morning person,” I said.

“That’s because you have low cortisol,” she replied, and left the room.

This shook me up. I have not been able to get myself on a regular sleep schedule, well… ever. The anxiety meds were supposed to help with that. The SLEEP AID was supposed to help with that. Nothing has worked. Not even having a baby who became a toddler who does not sleep past 7:00, and 7:00 is a sleeping-in day. Her theory is a good one, because cortisol is supposed to peak at 7:00 am. It’s part of what helps us wake up!

I had no idea about the healthy reasons we produce cortisol–I knew it only as “the stress hormone,” a trigger for adrenaline. I thought of it as bad, because a spike in cortisol means panic. Anxiety attack. I knew that very high levels could harm a developing fetus, because this was one reason I decided to remain on my anti-anxiety medication during pregnancy. If anything, I would have guessed that my cortisol baseline would be very high, all the time. But then, I remembered seeing a post on Facebook, a link to a TED talk about childhood trauma and health, later in life. I googled and found it. This is a transcript of Dr. Nadine Burke Harris’s talk and this is a link to an ad-free video of her speaking about “How childhood trauma affects health across a lifetime” – I’ve embedded the YouTube version, here, for our convenience.

Here’s what knocked the wind of out me:

In the mid-’90s, the CDC and Kaiser Permanente discovered an exposure that dramatically increased the risk for seven out of 10 of the leading causes of death in the United States. In high doses, it affects brain development, the immune system, hormonal systems, and even the way our DNA is read and transcribed. … What kind of trauma am I talking about here? I’m not talking about failing a test or losing a basketball game. I am talking about threats that are so severe or pervasive that they literally get under our skin and change our physiology: things like abuse or neglect, or growing up with a parent who struggles with mental illness or substance dependence. [emphasis mine]

Here I was, seeing my psychiatrist, midwife, general practitioner, and an endocrinologist, because my life around my monthly cycles had become hellish. And here was this video, suggesting that it could all go back to life with my dad, particularly those last four years, when I lived alone with him, as his paranoia deepened into psychosis. “Lock the doors and the windows. Your mother is going to try to kidnap you.” And I did.

The day I heard the low-cortisol theory, I went to therapy (thank goodness for therapy) and threw a tantrum. WHY did everything go back to my father? Did this mean that he was still an abuser, still in control, after I hadn’t even spoken to him in almost two years? I actually wished that a hormonal shift had been caused by having a child, because that had nothing to do with my dad. He’s never met my child. I was angry.

And then, I watched this speech, and I was relieved. It wasn’t that my dad was winning. It wasn’t my fault. I hadn’t given in to him. It just happened. My father’s mental illness began before I was born, and it got worse as I grew up. My brain and body responded just as Dr. Burke Harris describes:

Well, imagine you’re walking in the forest and you see a bear. Immediately, your hypothalamus sends a signal to your pituitary, which sends a signal to your adrenal gland that says, “Release stress hormones! Adrenaline! Cortisol!” And so your heart starts to pound, Your pupils dilate, your airways open up, and you are ready to either fight that bear or run from the bear. And that is wonderful if you’re in a forest and there’s a bear. … But the problem is what happens when the bear comes home every night, and this system is activated over and over and over again, and it goes from being adaptive, or life-saving, to maladaptive, or health-damaging. Children are especially sensitive to this repeated stress activation,because their brains and bodies are just developing.

A little more research into cortisol, specifically, revealed that while a child going through that trauma usually has a high baseline level, the adult who is no longer in that situation will often have a low baseline level of cortisol, but the minute we encounter a stressor, cortisol skyrockets. We still react to stressors as though we are seeing a bear in the woods, even if all we face is the prospect of going to the grocery store.

My third and fourth cortisol tests came back low–not “subclinical,” which would indicate a disease like Addison’s disease, but near the bottom end of the “normal” range. This range is skewed, because we do not test the cortisol levels of people who feel good. The same problem exists for thyroid testing. Many patients are told to go home, that there is nothing wrong with them, because testing does not show dangerously high levels. We may not be suffering from a dramatic, textbook illness, but our suffering, fatigue, headaches, insomnia, muscle aches, whatever it is that brought us to that specialist in the first place, well, that suffering is real. It deserves attention. My psychiatrist sent me to this specific specialist because she wants to know why a patient suffers, regardless of what the lab numbers say.

My specialist’s theory, about me having low cortisol “because of the trauma” (her words), is cutting edge. I’ve had time to ask a lot of people with a lot of childhood trauma in their backgrounds, and no one has heard of this. But here’s the thing: it’s working.

I started taking the first of the low doses of hydrocortisone last week. I cut a pill into four pieces and took 1/4th each day for three days. Then, I doubled it. Then, I took half a pill after breakfast and a quarter after lunch. But here’s what happened: the second day I started this treatment, I began to need sleep at night. The next morning, I woke up on time, by myself. That hasn’t happened every day, but I’ve been carefully listening to my body. On six of the past seven days, I have felt tired between 8:00 and 10:00 in the evening, and I have woken up, on my own, without even my child’s voice (or feet in my face) to help me up. I have had energy during the day. The fatigue that once kicked in a few times a day, leaving me feeling like I couldn’t move a muscle, is gone. It’s just gone. I can take a nap at noon, and wake up at 1:00pm, replacing my old habit of getting up at noon and napping from 3:00pm until 6:00pm. I don’t even know what to do with all this time! What a fantastic problem!

I don’t know why, honestly. I don’t know why a tiny amount of cortisone is helping. I don’t know if this will help my anxiety, or help me reach and maintain a healthy weight. I have about 10,000 questions for my next appointment. I want to know if the plan is for me to take this stuff forever, or if my body and brain can heal.

I do know that this specialist is doing something brave and remarkable in trying this treatment with me. It’s a low-risk treatment, but as I said, it’s a cutting-edge theory. She falls into a movement Dr. Burke Harris describes in her talk:

The single most important thing that we need today is the courage to look this problem in the face and say, this is real and this is all of us. I believe that we are the movement.

Me, too. I’m in.

Medical Mystery, 27 Months Postpartum

Fair warning: I’m going to swear, at the end of this.

Something is very wrong. At first, I thought that I was exhausted from holiday travel, and I assumed that this had triggered mid-winter depression. It’s not uncommon. I asked my psychiatrist for a higher dose of anti-depressants and bought a sun lamp. It let up. Then, it got worse. Curious about why my cycles seemed closer together, I started tracking them. To my very great surprise, they were almost a week shorter than they used to be. When the migraines and moods hit for the second time in January, I fell apart. I couldn’t wake up before noon, but I couldn’t make myself fall asleep, even with a sleep aid. I had taken on this “depression” by setting up a schedule for myself, so it was a sudden change in my sleep patterns. By day 2, I couldn’t stop crying. I had a panic attack about calling my therapist, let alone going to her office. I made it in once or twice, in all of February. I went in to get blood drawn (six vials) so my psychiatrist could run some tests. I saw her as soon as the results were in, but before she even looked at the labs, she listened to me. It was a medical mystery she had seen before: women who had given birth for the first time in our late 20s/30s (instead of at 19, as previous generations might have), seemed to have PMS that sounded almost like peri-menopause. My labs did show a potential risk for some thyroid dysfunction, which would explain a lot, and my Vitamin D levels were very low, so that might explain a lot, too.

Hormones were the big worry, though. We talked about who to see, next. The Vitamin D was the easiest fix: since my number on that test had been 14, instead of between 30 and 100, the normal range, every single time I had been tested since before my pregnancy, and nothing I had tried had budged that number even a little bit, she told me that an endocrinologist would prescribe “this brand that seems to work, when nothing else gets absorbed.” I don’t know what the brand is, yet, and that doesn’t really make sense to me, scientifically, but I had heard about this from a friend, very recently. Because I cannot gain weight–I am eating, people! and I am still under weight by 5-10 pounds! no amount of bacon has given me 5 more pounds!–and have a few other symptoms, she recommended an endocrinologist who wouldn’t focus on the numbers that might not mean much. Evidently, the range of “normal” for thyroid tests is not reliable; we don’t test people who feel great, so no lab has a great idea of what is actually normal. Printouts from labs give you big bold “out of range!” numbers, even when something is just a tiny bit out of range, so it was important to see a specialist who was willing to “try things” to see if they helped me feel better. I listened; I was willing to try just about anything, by then.

By the time I saw my psychiatrist, I was functioning again. I walked to her office, which isn’t far, but that means that I did this all by myself, while my mother-in-law took care of the toddler, at her house, and my husband worked. I made it through 24 hours alone, without freaking out, while ten days earlier, at the beginning of my cycle, I had actually eaten breakfast in bed, because getting out of bed was just. too. much. The timing of all of this sparked a long story, from this Doctor Who Listens, a rare creature, and not one I had expected to meet, having chosen her from an insurance directory based on her proximity to my house.

A long time ago, decades, perhaps, she had met with a “coop” of psychiatrists, ob/gyns, midwives, and endocrinologists; they were all seeing women who had had their first babies in their 30s and arrived at their respective offices with the same symptoms. They couldn’t sleep without waking every few hours, even when their children were sleeping for six. They had “PMS like teenagers” and skin changes to match. Their cycles seemed to refuse to go back to what they had been, before children. They were exhausted, all the time. Some of the doctors in the coop dismissed this as Motherhood. Some decided to start testing hormone levels. They saw enough women with levels somewhere between Healthy 30-year-old Women Levels and Peri-Menopausal Levels to convince about half the care providers that pregnancy was causing a permanent change for the worse.

To make life extra fun, I don’t fit neatly into any category: no obvious thyroid dysfunction, no obvious estrogen withdrawal, definitely no psychiatric cause. The last bit is very good news. My fears that I was spiraling into some sort of psychotic break have been put to rest. The fact that I have no answers and now wait on Doctor Time for appointments and new tests and still don’t know what any of those tests will be or what they will show? That fact SUCKS for anxiety levels. I’m a tangled ball of anxious thoughts, racing around my mind like NASCAR drivers.

These are the first words I have written in weeks.

My sleep is getting worse, as my appointment with the recommended endocrinologist approaches. My fear is not that tests will show something horrible; I had enough blood work to rule out just about everything terrifying, including HIV and Lyme’s disease. (How’s that for thorough? From a psychiatrist! So rare!) Even before those first results came back, I wasn’t afraid that I was *dying* – I didn’t feel like my body was in major trouble. I just feel wrong, inside. So, my panic before getting those first results, and my anxiety, now, is that a lot of specialists and testing will tell me that nothing is wrong. I should go home and get more rest and take Vitamin D and go for more walks, and blah blah blah. Everything I’ve heard before. I want something we can all agree is THERE, and I want something that a simple medication can help with. I don’t want to go through anything like trying to find the right combination of psychiatric medications. I don’t want to try mood stabilizers. None of that is on the table, now, but I just don’t know what will be left to try, if this medical mystery remains a mystery. What if I feel so wrong, moods swinging every which way, for no discernible reason?

I want my body back. I want my mind returned to its previous state, even if that’s a state that requires enough anti-anxiety medication to make most adults sleep all day. I want more than two good days a month. I want to stop feeling terrified that my cycle is going to shorten again. I want to inhabit this body without fears about what it will do to my mind, once or twice a month.

I nearly hugged my psychiatrist, when she said, “Of course, there is no research on this, because it doesn’t happen to men.” She rattled off a list of things I’ve heard chalked up to changes every mother just has to deal with, and I realized all over again, for the 10,000th time, that women are told to put up with all kinds of pain and discomfort and anxiety and mood swings, because that’s just what life as a women is like.

I started teaching a HypnoBirthing course to a lovely family, and I heard myself talking with them about how the uterus functions, and why there is no physiological reason that healthy uterine muscles should cause us pain, not even during childbirth… and the light went on yet again. It says, right there, in the script I know so well, that even during a healthy woman’s menstrual cycle, there is no physiological reason for the pain we call “normal.” Painful cramping is a sign that hormones are out of balance. The medical community knows this, because these are just muscles, and as they function normally, just like any other muscle, they should not hurt. But just as the medical community KNOWS that birth happens without any need for medical intervention but BEHAVES as though each birth is a medical emergency, women who are not pregnant hear that, for no reason at all, we are destined for pain and suffering.

I need all my willpower not to start reciting my HypnoBirthing curriculum, when I hear women joking about how much childbirth sucks, and how it must just be amnesia that lets any woman agree to go through it all again. I remember almost every darn minute of my birth, and it was amazing. Sure, there were moments of discomfort and even pain, but my body, mind, heart, and soul worked together with my baby to accomplish this incredible thing: a baby’s gentle entry into the world, from my womb to my arms. The sensations I remember most clearly? Tension and pressure. Muscles tensing in this incredibly powerful, strong way, in waves what moved down when my baby was ready to move down through the birth path. Pressure as my body unfolded to make space for that tiny body to move, gently, from the uterus to the outside world. I later learned that my child crowned for AN HOUR, and all the while, I craved love and support and gentle reassurance, not painkillers.

I will not settle for a monthly cycle that sucks days from my life, because my body can function perfectly. If hormones calmed me down, during pregnancy and childbirth and that first year of breastfeeding, with no periods, then I refuse to accept that hormones will now turn me into a weeping, raging, miserable person I do not recognize. Somebody who knows where to look had better look everywhere, and find me some damn answers.

I see my midwife a week after I see the endocrinologist, and I’ve already spoken to her on the phone about what we’ll be discussing. Now I just have to pray that my body cooperates enough to let her do her work, because God help me, I only have 8 days between the onset of the next period, as predicted by my handy charting app, and my appointment with my midwife. In the meantime, you’ll find me on Polyvore, distracting myself by making collages of pretty things. And hey, if you want to buy some pretty things, or take a HypnoBirthing class, I am happily competent (no crying!) while I’m working on Jamberry, Chloe and Isabel, and childbirth education.

It felt so good to write this. I keep myself going by reminding myself that I am successfully refusing to lose ME to these moods, or even insomnia, while I wait for answers. I haven’t lost anything, the system has just been hacked by a nasty fucker who is not welcome and will not stay.

FMP app. I like elephants.

FMP app. I like elephants.

Too Poor for Wellness (With Some Good News)

I’m feeling stuck, and it’s because of money. I saw a path other than traditional psychiatry through integrative medicine, and I wanted it to work. I’ve been working with practitioners over the phone for months. The science is fairly simple, and it involves real healing at the heart of a chemical imbalance like the one at work in depression–I’ve been using amino acid supplements to help my brain make more of its own serotonin and dopamine, and to help it transmit and absorb those chemicals properly. I’ve written about this, before. It’s been hugely successful. But I have to stop moving forward, and stay where I’m at now, because apparently, I’m too poor for wellness.

Here’s what I mean by wellness: feeling good, rather than feeling not sick. I want to feel less anxiety, not simply that I have medications that manage my anxiety. I can still feel it, trying to create havoc, in the background of my mind, even while the medication (Klonopin, primarily) keeps the symptoms like agoraphobia (fear of leaving my house) under control.

But let’s back up: I sought out an integrative medicine practitioner for help with migraines. As long as I keep taking a low dose of the amino acid supplements I started in the course of this treatment, I don’t get migraines! I don’t get any hormonal symptoms at all! I don’t wake up with headaches, and I don’t wake up feeling exhausted (unless I’ve gotten no sleep). I call that a huge WIN.

Along the way, I did a lot of reading about what these amino acid supplements were supposed to do, however, and between the books and the articles and talking with my practitioner, I really began to hope. I hoped that the chemical imbalance that causes my anxiety and, sometimes, depression, would slowly heal itself, with the help of this relatively new system of treatments. And I might never find out if that’s possible, because I can’t afford the hourly rate, the lab tests, or the extra supplements. I’m mad about that!

I’m also mad about this: people who offer things that help with anxiety/mental health really need to prepare themselves better for ANXIOUS PATIENTS. I’m not a high-maintenance patient, mostly because my anxiety is something I’m highly aware of, but when I am feeling extremely anxious after providers of alternative treatments have done something like charged me an unexpectedly high amount in an invoice, I would really appreciate it if the anxiety that caused me to seek their services in the first place played some role in their responses. “The doctor doesn’t make exceptions of any kind” was the entirety of one response I received, from an office that sees thousands of patients. Surely, there are several of us who feel anxious about money. When I email anyone asking “Why was I charged twice what I thought I would be charged? Can this invoice be altered in any way? This will have a huge impact on my family’s ability to by groceries!” then is it wrong to expect a little empathy in the response I receive?

As you may have noticed, this has become a rant. I’m feeling stabby, and I need to rant this week. I’m going to continue to rant, now. Warning: I’m about to rant about medication, psychiatry, and anxiety about long-term health effects of taking medication for more than ten years. I’m at seven years, so it seems like the time to think about this for me, but you may want to skip the next paragraph if it’s not something you want to think about. Important! The side effects of NO meds, for me, would be daily panic attacks, agoraphobia/not leaving my house ever, being afraid to eat and answer the phone, among other things. I just want to try life without SSRIs, because I’m not sure I need them. I want to taper with the help of a psychiatrist, because that’s the ONLY healthy way to taper any prescription medication.

Thanks to Gratisography.com for being awesome about free images.

Thanks to Gratisography.com for being awesome about free images. And thank YOU for reading my rant!

Now then, here’s my rant about how, in my experience, the Wellness Community has failed to take my wellbeing into account:

The same practitioner who is too expensive to continue working with frequently enough for me to have any hope of trying to get off my meds (something I had hoped to TRY, eventually) suggested that I read a book called The Anatomy of an Epidemic, which is apparently about the long-term health impacts of taking medications for depression and anxiety. A book written by the practitioner himself addresses the physical damage done by trauma, anxiety, and medication, in the long term. When I wrote an extremely anxious email about not being able to afford his services, he replied that I could find the supplements on other websites, for less money, and did not address in any way the fact that I now had all this knowledge about potential harm being done by my current medication regimen and NO MORE HELP. In fact, I’m pretty sure that he could have shaved off a significant amount of time (and MONEY on my BILL) in the one session we did have together, had he simply not started the conversation we had about how psychiatrists, in general, don’t really seem to be motivated to help patients like me, who are concerned with the long-term use of the medications they prescribe. Looking back, I can see $100 and a lot of time and energy and anxiety that I would not have used up, had he just stopped talking, after he agreed with me when I said that it seemed healthy to TRY life without Effexor. But no, we had a conversation, one I was then charged for, about how psychiatry would fail me, Integrative Medicine would help me, and then, HE SENT EMAIL SAYING THAT INTEGRATIVE MEDICINE WOULD NO LONGER BE HELPING ME (outside of allowing me to buy supplements). It doesn’t take a genius to guess that maybe, that would do more harm than good. And this dude is supposed to be providing HOLISTIC care.

The good news is that I’ve dealt with my fears, tallied up how much I’ve gained from this whole process, and moved on, all by myself. BECAUSE MY THERAPIST IS ON VACATION. Because the universe is apparently testing me, somehow. I’ve come out on top, universe! Do you hear me? I win! Here’s the result: I’m ok with taking the same dose of supplements I’ve been taking, and I will see one of two providers, infrequently, to keep an eye on how that’s going, as long as they are up front about how much it will cost and agree that, barring any real increase in cost (ahem, NOT accidentally talking for too long), I will pay only the amount agreed on in advance for their time.

I did that all by myself, by talking to my support system (Nathan! thank you! friends! thank you!) and looking carefully at my family’s finances. Oh, and by the way–our food benefits from the department of social services are completely up in the air, because they don’t know how to deal with graduate student pay and “can’t verify” Nathan’s income without a whole week of work. And I’m not freaking out about that.

I feel better after ranting. I win.

Study Finds SSRI Use in Pregnancy Safer Than Believed

I cannot tell you how excited I am to share this news. Of course, it hasn’t spread like wildfire among media outlets, because it isn’t scary. But I’ll put aside my cynical hat for the moment to celebrate that the Massachusetts General Hospital Center for Women’s Health has reported finding SSRI use in pregnancy safer that previously believed. The findings of previous studies were inconsistent, with some reporting a link between SSRI use in the first trimester and an “increased risk of cardiac malformations,” while others found no such link. This particular study is a big deal for a few reasons. First, the MGH Center for Women’s Health set out to resolve problems with previous studies, in order to make their findings more conclusive. Second, it has a world-renowned reputation for doing high-quality research.

While I suspect that doctors will continue to issue vague warnings about Zoloft and heart problems, their better-educated peers can reassure women who depend on this type of antidepressant that they are not, in fact, putting their developing babies at a greater risk. SSRIs, or selective serotonin reuptake inhibitors, are the most commonly prescribed anti-depressant, and I get email almost every week from women who read this blog, and my story, and feel wracked with guilt for taking their medications during pregnancy. I so appreciate any good, solid, scientific information I can pass on to them to relieve any one of the many fears they tell me about.

There’s something important to note, here: the study finds that taking SSRIs in your first trimester is not likely to *increase* your baby’s chance of developing a heart defect. This language is used carefully because, as I write to every woman who tells me about her medication guilt, EVERY fetus is at risk for developing all kinds of defects. I still remember my shock, when I learned that taking my meds during pregnancy would simply increase risks that already existed. If there was “something wrong,” no one would be able to say with certainty that my medication had caused it, or whether it would have happened anyway. Babies are born with “cardiac malfunctions” to women who take SSRIs and to women who don’t; they just happen to occur at about the same rate, in both groups.

“There is no such thing as a risk-free pregnancy,” I learned while doing research before my pregnancy. Thank goodness that this common class of medication doesn’t seem linked to any additional risks to worry about!

Being Right Feels Awesome

I feel awesome. Because dropping my Effexor dose was the right thing to do and made my crazy symptoms go away. And because I was right to insist that my psychiatrist drop my dose of Effexor. Reminder: I write my experience; I don’t give medical advice. Just in case anyone mistakes this for me endorsing tapering medication without supervision, though, let me clarify! I am still under supervision. The lower dose I’m taking is a small step down, the smallest possible, a careful step, and it was prescribed by the same psychiatrist who has been writing my prescriptions since early 2012.

I explained last week why the amino acid supplements I’m taking probably warranted a smaller dose of Effexor, by just a little bit (so far), and why I was angry at my psychiatrist for being rude about my attempt to use holistic, integrative medicine to improve my anxiety. I have an appointment with her in ten days, and I’m pretty darn excited to be able to go and report that I feel ten times better, now. I also have the name of a psychiatrist who advertises as having had training in integrative medicine to call in case my doctor is condescending again.

I’ve gotten some props for acting quickly and decisively as my own advocate, and I am taking those props. If I had been wrong, I’d have called up the doctor and told her I was going back to the higher dose. And I’d still be proud of myself for actively participating in my own treatment. I went searching for an image that illustrated how I feel about my own ability to clearly articulate my needs and demand that they are met by my health care providers. Enjoy what I found. She’s pretty awesome, too.

rowboat

This is a woman rowing a boat around 1900. There is no copyright on the image, anymore, but I found it on Flickr commons. I love that she is so strong. I love that she’s part of a team. I love her hat, too.

Why Must Psychiatry Fight Holistic Healing?

My introduction to psychiatry was blessed by a doctor who spent half his working life doing neurology research. Why was this a blessing? Because people who do research in neurology know one thing very clearly: it’s damn near impossible to find out what’s happening inside the human brain. He knew better than anyone that his work in psychiatry was guess work–the best work the traditional Western medical community could do for patients in dire need of help, but far from the more precise science of other diagnostic procedures. When I asked him if I could be feeling something because of a medication I was taking, he once said “Well, it’s not on the list of common symptoms, but that doesn’t mean much.”

I’m not sure how my doctor for my first five medicated years would feel about my current work with a functional medicine/holistic medicine practitioner (Brie) and our effort to use amino acid supplements and nutritional changes to heal the damage done to my body and brain by years of trauma and medication. I do know that my heart draws me to this work, and the more I learn, the more my head says YES! THAT! that is what is for me!

Pause for clarification: when I say that damage has been done to my body and brain by my medication, I’m not referring to any weird theory about medication being toxic and “unnatural.” Meds saved my life. Meds keep me functional, today. I am pro-meds, when prescribed and taken by communicative, cooperative doctors and patients. Any doctor will admit that there are downsides to the kinds of medication I take, a benzodiazepine called clonazepam/Klonopin (generic/Brand) and a selective serotonin re-uptake inhibitor (SSRI) called venlafaxine HCL ER/Effexor XR–“benzos” and Effexor are both notorious for causing chemical dependency, which is NOT addiction, but which leads to withdrawal-like symptoms when we try to stop taking them. There are no clinical studies outlining the effects of  SSRI use for long periods of time (10 years or more), but it does seem that SSRIs decrease serotonin made by our bodies and brains. Click that last link for more information about how SSRIs work–particularly if you think that they increase serotonin production, because they don’t cause our bodies and brains to make more “happy” chemicals. They just change the way those chemicals get used.

Now, what exactly is the work that I’m doing? First: a change in diet. This Monday, 13 days into my gluten-free, sugar/sweetener-free, soy-free, cow’s milk-free, low-glycemic diet, I began taking amino acid supplements in large doses. Why am I swallowing stuff you’ve probably only heard about in the context of food and nutrition to help with my brain? Because one way to get to the brain is through the fatty acids that cross the “blood-brain barrier.” This is exactly what amino acids do, among other things. Why such large doses? The Franklin Institute piece I just linked to explains that “The fact is, if amino acids reach your brain at all, it should be considered a success. Not only do brain cells compete with body cells for amino acids (body cells pull amino acids from the bloodstream more easily), amino acids must pass the protective blood-brain barrier.”

Another pause for another clarification: as the super helpful site I just quoted goes on to explain, “Food is your best source of amino acids. Be cautious about trying to manipulate your intake with individual amino acid supplements.” Please, do NOT read this blog post and go out and buy a lot of amino acid supplements from a drugstore and start popping them. I’m about to go into just how intense this gets, and trust me–you do not want to do this by yourself. If you’re curious about it, start by eating better. More protein, the right kind of protein, balanced with the right carbohydrates, etc. Again, all on this site, here, which my practitioner agrees is a great recourse: http://www.fi.edu/learn/brain/proteins.html. No, I will not post the details of the diet I’m following, because I really needed help feeling ok while making such big changes so quickly. High anxiety and increasingly bad migraine headaches warranted the kind of action I’m taking, in my opinion. But I’m paying an expert to help me, and she’s worth twice what she’s getting.

Now, 730 words in, the story that relates to my title! Sorry about burying the lead, as they said when people still read newspapers, but I’m not feeling so hot. I’m not in a super-high-energy place with anything, let alone editing.

I began taking the supplement course specifically designed for me on Monday. The plan is to send a urine sample for specific testing to see how it’s all going exactly 14 days after taking my first dose. It’s very specific. Two weeks. Not a lot of time. I was surprised, then, but not shocked, when I felt a sudden shift in my overall wellbeing. For the worse. The very much worse. I had been warned, though, that I might feel really badly as my body and brain adjusted, and that this could mean a bad reaction to the supplements, a need for more of the supplements, or that I needed less of my medication. It’s maddening, though, that all three of these things feel pretty much the same way, so trial and error is the only way to find out how to fix it. I did just what I was supposed to do: I left a message for my psychiatrist, who can take a long time to call back, then I called Brie, then my therapist, Linda. Brie was, as she has always been, incredibly smart, clear and helpful. I was going to try this, and if this didn’t work, then that. I called my therapist to keep her in the loop and for comfort (Downton Abbey fans–the woman has the voice, accent and demeanor of Mrs. Hughes). My usually rather warm and always helpful psychiatrist shocked me with her cold tone, short sentences, and distance.

Why? Well, despite the fact that during our last session together, she smiled, nodded and expressed a lot of curiosity about amino acid therapy to help with chemical dependency on medication, my doctor had not done any of the things she had told me she would do. She had not returned Brie’s phone call. She had not done any research into this holistic therapy. Most importantly, she was not supportive of trying a decrease in my medication dosage to see how that reacted. In short, she didn’t believe in any of this. The contempt in her voice shocked me.

This doctor is good at her job. When I was pregnant, she was calm, steady, communicative with my midwives, and always ready to schedule and extra session if I felt nervous. I wish that kind of vigilance were the standard of care for pregnant women with a history of mental health issues. What I’m doing now, however, is far outside her purview. She’s not comfortable, and that’s fine. But she didn’t tell me that when I first explained what I would be doing, when I directly asked her if I could call her, list symptoms and get her opinion as to whether I was feeling too much Effexor or too much Klonopin. Perhaps she didn’t believe that it would do anything, this “kind of thing.” Perhaps she has such strong convictions about the medications she prescribes, that she believe they should be the last change I make. Whatever is going on with her, she handled this badly. I cried a lot. I talked to my therapist for the third time in one day. I ranted and raged about communication and meeting me halfway.

This morning, I woke up newly determined to stay the course with this holistic treatment and very carefully try a lower Effexor dose, before changing my supplement course. This dose of supplements is only supposed to last two weeks, so I wanted to try a tiny step down in the meds before messing with such a short-term program. I felt confident about this because I am very good at communicating with my doctors (yes, even when they suck at communicating with me). I am always honest with myself about my mental health. I feel no hesitation about the idea of going right back up to my previous dose at the first sign of trouble. While my psychiatrist remains uncooperative, she did finally speak to Brie and she is willing (if not happy) to write me prescriptions for lower doses, provided they are within a reasonable range. I’m not interested in huge changes. This afternoon, after a lot of communication with I dropped from 200mg to 175mg. I’ve been paying very close attention to the nutritional aspect of all this, too, so I’m being extra careful to eat more often (an empty stomach exacerbates everything, I find, and makes it really hard to figure out what to do next). I’m sleeping more.

The larger issue here is that I have very few options, when it comes to working to decrease my dosage of psychiatric medications;  when I was so ill that the only way out of that darkest of all places was via medication, psychiatry worked exactly the way that it should. I worked with my doctors. I made informed choices. I was never handed a sample or a prescription without a proper explanation of the short- and long-term side effects and consequences. I was never shamed by a doctor and always felt like an active participant in my own care. In the last 24 hours, I felt as though that had disappeared.

It’s important that doctors are cautious about patients who suddenly want to decrease or drop a medication, especially with histories like mine, that include such extreme symptoms and a hospitalization.

It’s also important that patients like me have a chance to try to find a way out of the prescription cycle, if we want to do that. I’ve been taking meds for seven years. At one time, the idea of taking them forever didn’t bother me. But I have this chance, right in front of me, to try something that could help make meds a less significant part of my mental health treatment, and I want to take that chance. No one who knows me well is worried that I will do anything drastic, like flush my meds. No one is even worried that I will fail to report every single feeling and sensation that I have! And yet, I am stuck working with someone who thinks I have been taken in by “so-called ‘science'” because there is almost no one who can write me the new prescriptions I’ll need who believes that anything else works! It’s a cycle that takes enormous strength and delicate self-care to break. I am so angry that my doctor is withholding her expertise while I Google “symptoms of Effexor overdose” and choose all by myself which drug I want her to decrease, all so that she doesn’t have to be afraid that she has made the wrong choice. I get it. Doctors don’t want to experiment. I don’t want doctors to do much experimenting, either.

But there are many people who point to psychiatry and call my doctor’s theories “so-called ‘science'” – we have no way of actually seeing how these medications work. No one has ever SEEN a neurotransmitter in action, in the brain! No one has watched an SSRI travel through a patient’s blood stream, past the blood-brain barrier, and watched it stop the re-uptake of serotonin from happening. It’s good guess work. There is solid evidence. But there is also a lot of money from many drug companies funding the research that provides that evidence. Holistic treatments, for many reasons, don’t get that kind of research. Before now, I didn’t know how to go about caring for my body in a way that would help my brain, even theoretically. I just want to try this very clear, very specific path, to see where it leads.

The truth is that I’m lucky my doctor is willing to even see me, let alone write prescriptions she doesn’t like writing. She is very interested in keeping me safe, even if she would rather I didn’t do this. I have heard so many stories, mostly from readers I’ve never met, about doctors who simply ask a patient to leave and never come back, because she does not agree with the doctor’s assessment. That would be frustrating no matter what, but it’s downright irresponsible when that patient is chemically dependent on a medication and suddenly left with no refills. It’s not safe to simply stop taking this stuff.

I am safe. I am feeling better. I am moving forward in a way that feels true to my heart and mind. I am scared, of course, because this is brand new territory for me. I am hopeful.

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What A Checkup Can Mean, With A Good Doctor

I love going to the doctor, because I have the most amazing doctor I have ever come across. He has white hair and grandchildren, and a more curious mind than any of the others in his practice. When I came in for a weird knee injury that wouldn’t go away, he asked about breastfeeding and medication with real curiosity. When I told him who had given me the information and where he could read more, he wrote it all down. He mumbled something about an argument with a fellow physician who remained convinced that women should take no medication while breastfeeding, and a patient who was very pregnant. I was so impressed when he was willing to come out to the waiting room to get my breastfeeding consultant/doctor’s card! He always asks about my life, as part of our conversation about my health, and this is the mark of a good doctor. If your doctor doesn’t want to know that you’re still breastfeeding your one-year-old because that baby just loves that milk so very much, but only knows that you are still breastfeeding, then you may have an alright physician. But not a great one. I have a great one. (His idea about how I might have hurt my knee helped me solve the mystery, which had to do with nursing, actually, and I would never have known, without him!)

Another reason to love him: he stocks his exam rooms with very good novels. For years, I’ve been meaning to bring this up, and during my annual physical today, I remembered to ask about the books. He told me, “I’m not really a doctor; I am actually a librarian.” I thought he was going to wink! He gifted me a copy of a book by Irène Némirovsky, because I noted that I didn’t realize another of her works had been translated into English after her book Suite Française. The exam room I most often occupy has an increasing number of books by a good detective novelist/writer of historical fiction whose novel about the Spanish Civil War I’ve been meaning to read for years. (Unfortunately, I can never remember the author or the title until I am in that room, staring at it, again.)

I forgot about how much I like my doctor, because all the while I was pregnant, I went to see my midwives about everything. But he follows up on everything. I wanted Imitrex, because my migraines are more frequent than they were, making caffeine and ibuprofen ineffective (they always are, if I use them too often). He doesn’t just write a prescription, though; he wants to see me in a few months. He has the hematologist check the levels of Effexor in my blood to make sure that they aren’t nearing levels of toxicity, which is rare but can happen. And he explains to me that that is what is happening. He offered to have my test results sent to my home, so that I could share them with my psychiatrist and midwives, just in case his administrative assistants don’t find fax numbers for them.

The longest part of my visit, today, though, was about my diet and appetite. It’s a routine question. But the number on the scale was lower than I had expected. I’ve been forgetting to eat. He genuinely wanted to know how I was going to go about ensuring that I was eating balanced meals. He mentioned my energy levels, a concern for my welfare, while also bringing up the energy it takes to breastfeed a baby and toddler. I didn’t feel like he was worried about my baby; he asked about our pediatrician, said we were in good hands, and moved on. He asked another routine question about a link between my attitude towards food and breastfeeding, but I explained that I can’t tell. I don’t know what’s related to my anxiety, or the relief thereof, and what isn’t. Having a baby has made me happier. Because I am now happier and less anxious than I was before my pregnancy, there have been fewer times when I forget to eat. It still happens. Is the infrequency related to nursing? I don’t know. But I did feel normal, again, when he mentioned a few close family members who become engrossed in their work and forget to eat. It was quite sweet of him, and made me want to be adopted into that family more than a little!

Finally, when I asked whether I needed a booster for my pertussis vaccine, he actually had a detailed discussion with me about the TDaP vaccine and the newly available pertussis-only vaccine, the availability of the shots and how little they actually know about the effectiveness of them.

Self-care is not just about getting a massage and going to therapy and having nice tea for rough days. By carefully selecting my primary care physician and making sure that he is someone who will happily speak with my psychiatrist, midwives and even my therapist, it saves me time, energy and boosts my mood. If something were really not going well, and I wasn’t really aware, they would put the pieces together for me. If my blood tests show that I am anemic, but I haven’t really noticed any dizzy spells, my doctor will prescribe iron and tell my psychiatrist to discuss the relationship between my anxiety and appetite. It’s a mark of how much more I value myself and my life that I even have a primary care physician, than I did in the past. I care about my life and health enough to risk being told that I’ve done something wrong (not enough sun, not enough meat–I often see low Vitamin D levels, low iron, as criticism). That anxiety is real. But I have a safety-net, now.

Today’s lesson: I care enough about myself to make sure that I can’t hide anything that’s wrong, mentally or physically. Having spent the first twenty plus years of my life keeping secrets from my parents and teachers about stomach aches, insomnia, sweating palms, nightmares–this is real progress.

My new book.

My new book.

Women and Meds: a Documentary in the Making

I had a chance to chat with film maker Dina Fiasconaro about her documentary, Women and Meds. I asked her how she came to start working on this project,  given that so few people seem willing to speak openly about the issue and that there is little hard data/information to work with. She wrote such a heartfelt response. I so hope that I can see this film, soon! And that you can, too!

From Dina:

A few years ago, my husband Gary and I began talking about having a child. We were approaching the ‘now or never’ point, in terms of age, and realized that it couldn’t just wait for a ‘happy accident’ because the medication I was taking at the time could potentially cause harm to a baby. Being a control-freak planner, I began researching my options: wean off medication and risk not feeling well, stay on medication and risk harming the baby, or not have a biological child at all. I began scheduling consultation appointments with therapists, psychiatrists and high-risk OB-GYNs. I studied my calendar to make sure everything lined up with my work schedule; as a full-time professor, I could optimize my summer break, and not miss too much of either semester.

Along the way, I discovered that there was a lot of scattered and conflicting information, and no clearly defined path or source of information for myself or other women dealing with these issues. Some of the research material was outdated, or just didn’t exist due to the ethical complications of testing medication on pregnant women. Pharmaceutical companies, even those manufacturing OTC medication like sleep aides, were reluctant to say whether or not their medication was truly safe – so I got passed back and forth between doctors telling me to double check with the companies, and companies saying to consult a medical expert, or, my GYN telling me to check with my therapist, and my therapist telling me to check with my GYN. No one would take ownership or offer a clear answer, which was incredibly frustrating!  And, even the most caring and informed of OB-GYNs and mental health professionals seemed to take an opposite approach from one another – the OB was ultimately concerned with the health of the baby, and the mental health professional with my mental state.

I decided that making a documentary film which followed me on my journey and also highlighted the experiences of other women, would be the best way to consolidate what I was learning and communicate it to others.

Ultimately, I want Women and Meds to raise awareness and provide some guidance and useful information for other women and their families. I’m hoping that people walk away with a newfound sensitivity to what any woman might be going through, as mental illness and reproductive issues are two topics people are very hesitant to talk about publicly. I would also like other women to know they are not alone – there are many of us going through this, and there is help out there. I can’t tell you how many people have contacted me with their personal stories, or stories of others close to them who are dealing with the same issue. One high school friend contacted me to let me know she also discontinued her anxiety medication to have her son, and although she was optimistic about not going back on anything afterwards, found that it was necessary. Another friend who recently delivered a healthy baby girl, reached out to me about her decision to stay on Wellbutrin throughout her pregnancy. Another woman’s mother just today just contacted me about her struggle with mental illness. And said another woman, “Stigma is so ugly, and it makes us feel worse in our darkest moments. I know a film about this will be so wonderful and helpful It’s true that stigma and silence only hinder the process of getting well, and the more support from doctors, families and loved ones a woman has, the greater chance of a positive experience and outcome she’ll have.

We are currently fundraising for the documentary, so if you’d like to contribute via our fiscal sponsor (which makes your donation a tax write-off), please follow this link: http://womenandmeds.tumblr.com/contribute

Please “like” our Facebook page, and help us spread the word about the film!
www.facebook.com/womenandmeds

Here’s a trailer for the film:

To Good Morning America, From Anne-Marie Lindsey

Dear GMA,
I’m sure that you did your best; frankly, your segment and blog post misrepresented my story and [www.mommyneedsaxanax.com]. At best, it was harmless, except for the anxiety and anger it has caused me. At worst, your piece came off as pressure to use meds only in emergencies and to get off as soon as possible. A “response to motherhood” does not even come close to an accurate characterization of most stories. If you want to cover postpartum mental health, say that. If you were trying to cover mental health for women like me, who became mothers after overcoming mental health obstacles, you utterly failed. You may have shown me saying that meds are a tool in my toolbox, but you didn’t mention the other tools available, how to “find a support group” or the fact that 2 of the 3 moms you interviewed were on meds before motherhood. I am not only disappointed, I am angry on behalf of the mothers you shamed today. Now, many of them will have to answer questions like, “Do you really still need medication? Are you sure?”
Women do not take medication because they can’t cut it as mothers alone. That was the message your show and segment sent. You wasted a golden opportunity to change hearts and minds. You perpetuated the stigma that mothers like me are weak. The “anchors” came off as callous and completely lacking in empathy. You could have done worse, and that’s the best I can say for your so-called “news” piece. This was sensationalism and a disservice to mothers. Trivializing mental illness and the medication that helps the mentally ill is never ok.
Anne-Marie Lindsey

We Are On Good Morning America… On Monday! March 11!

After a nerve-wracking and confusing viewing of Good Morning America this morning, I emailed the producer to ask, “Um, why were we not there?” She graciously informed me that the piece has been pushed back to Monday to give the show more time to cover “such an important topic.” Sorry for the suspense and confusion, but I hope you tune in on Monday!

In the meantime, here are some more photos:

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