I don’t even know how many times I’ve been misdiagnosed at this point. But the hits just keep on coming…
What she said.
When we start a blog instead of simply keeping a private diary, it’s because we want to connect with others. When you start to blog, you join a community.
It comes as no surprise that many bloggers are drawn to online communities as a place to work through challenges — to heal and process, find others with similar experiences, and seek (or offer) support. There are lots of supportive communities around WordPress.com: women dealing with breast cancer, people managing diabetes, parents of children with unique needs, and many, many more. Throughout January, we’ll be zooming in on how bloggers use WordPress.com to support their health and wellness.
Today, on the heels of the Blog for Mental Health 2014 kick-off, we’re focusing on mental health. Read on for a look at the many ways WordPress.com bloggers use their sites to improve their own lives, and the lives of others who have…
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Hey, kids – it’s that time again!
“I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”
What to say? I’m feeling less crazy than ever, which is pretty awesome. It seems that a lot of my insanity was really “just” an endocrine disorder, which merely goes to show how incredibly complex our bodies are. Last year, I officially gave up the bipolar diagnosis, and Mr. Chickadee said, “I told you so” because he never really believed it anyway. Despite some tough times here and there, plus a nonstop battle with my health insurance company, I also graduated from DBT and lost over 30 pounds, so a lot of good stuff happened too. I started keeping a gratitude journal, which has helped me stay more focused on the many things I have to be thankful for — and there really are so many.
But the coming year is full of change and anxiety-inducing things like moving and starting a new job, except I don’t know which job or where we’ll be living in 6 months — just that everything we have come to call home is going to change. It’s scary and it’s really hard for me to handle this level of uncertainty, but I feel like I’m doing pretty well with it most of the time. I’m trying to make strategic choices from a long-term perspective and focus on being realistic about what I need to succeed, which might mean a lower-ranked, lower pressure job, and I’m certainly OK with that tradeoff.
I’m hoping that after interview season in January/February, I can start weaning off the Wellbutrin XL that I’ve been on since 2001. I worry that my long-term use of these meds might mean that my body can no longer produce the right chemicals properly by itself, but I have to try. If I don’t really need this $500+/month prescription, it would be great to get it out of my life and save it for the next time a serious depressive episode rolls around. Because I know that’s likely – my standing psychiatric diagnosis is, for now, Major Depressive Disorder, Recurrent.
I haven’t been depressed in awhile, though I still have bad patches of dysphoria in which it’s like someone flipped a switch in my head and turned off self-esteem, confidence, and general competence, while turning on doubt, obsessiveness, and pessimism. Happily, however, those episodes are now less severe, more predictable, and shorter. Apparently my body really does need the progesterone boost for my brain to keep working properly!
And now I’m going to do the best thing I can for my mental health – put myself to bed.
Aloha ‘oe, friends – but just for now!
I told the reproductive endocrinologist about the heart palpitations and he waved them off. My Psych Nurse didn’t; she ordered an EKG, which came back with an abnormal result. I’ve been referred to a cardiologist, and just filling out the paperwork has been stressful enough to give me more palpitations.
There are a couple of obvious potential causes of heart palpitations. As the endo pointed out, caffeine and stress are possible triggers.
- Caffeine: I have one serving in the morning. Sometimes two. That’s not going to cause palpitations throughout the day, and it has never caused them before.
- Stress: Sure, I have lots of stress, and have had for a very long time. In fact, with all the therapy and stuff, I’m a lot less stressed than I used to be, and have much better coping skills. So I don’t accept stress as a primary cause of palpitations either.
- Stimulants: My ADD meds could lead to palpitations. I have never had that happen on any dose of any stimulant, not even when combined with substantially more caffeine than usual and a stressful situation.
- Lamotrigine: Lamictal has potential to create withdrawal arrhythmia despite very slow tapering, as I’ve worked my dosage down from 200mg to 25mg over about 3 months. That timing happens to overlap with taking Yaz.
I don’t know what happened, but all of the sudden, everything makes my heart race and struggle. Adding Yaz was the only recent change to my meds, since it’s possible but farfetched to blame lamotrigine withdrawal alone for causing arrhythmia. The palpitations started about two weeks after I started Yaz, but took about 6 weeks to build up to the point where I was worried enough to mention it to the docs.
I worry that all the meds are worsening an existing but dormant problem, interacting with or potentiating other medications, or otherwise just plain hurting my heart. But Yaz definitely played some kind of role in this – the big clue, as with every med to which I’ve ever had adverse reactions, is that the side effects hit their max at peak blood serum level timing – in this case, 1-2 hours. So I would take my meds at 7 AM and by 8:30 I was having heart palpitations every few minutes, fairly intensely, fading off a little after nine.
But then on the days I took the placebos, there were hardly any heart palpitations at all. So after the abnormal EKG, I discontinued Yaz in hopes that things would return to normal like they seemed to with the placebo pills.
Well, not yet, anyway. It’s unquestionably better, but just a few days after stopping Yaz I was very anxious about making my flight connections and had heart palpitations like crazy, very clearly associated with the anxiety rather than the timing of taking meds.
This never used to happen except during panic attacks, but now it’s just coming up more often for lesser worries, and it’s almost enough to scare me into a panic attack by itself. Since then, even on days when I didn’t take my ADD meds, I’ve still had heart palpitations – not many, but still. Enough to notice and worry. Quite a lot more than before.
I’m a bit terrified of what will come of the appointment with the cardiologist. I’m genetically prone to coronary heart disease but I’m doing everything right in terms of eating properly, losing weight, and getting reasonable exercise. So why am I suddenly having heart palpitations? What the hell is really going on here? What kind of horrible new tests are they going to inflict on me now? And is this a temporary thing, or will I have to deal with a bum ticker moving forward?
Worry worry worry…
Note: I am on vacation this week and won’t be replying until I am not on vacation and can face the computer without shrinking back in horror.
Yesterday brought another slew of blood tests – just what I wanted for Boxing Day! Ye olde V58.69 – long-term use of medications – is the prescription code for “any and all tests I want to run.”
My last comprehensive panels were about a year ago, just after the bipolar diagnosis. Last time I had endocrine levels done was just the start of the “lumpy gonads” shebang (thanks to the Amazing Sara Lomas for that phrase!)
This time I had a whopping 17 tests:
- CBC diff (complete blood count with differential)
- CMP (complete metabolic panel)
- T3 T4 TSH (thyroid levels)
- Lipid panel (cholesterol levels)
- HgAiC (blood glucose)
- Dhea sulfate (endocrines – same for the next 5)
- Testosterone: free, total
- Folate (folic acid)
- Lamotrigine levels (minding the dosage)
- LFTs (hepatic function)
- 25 OHViTD (total Vitamin D)
- VB12 (Vitamin B-12)
A metabolic/lipids panel has to be a fasting draw, and they can’t split up the “prescription” for tests. My body hates fasting draws; my blood sugar is low, I’m uncaffeinated and cranky, and vasovagal syncope – fainting – is practically guaranteed.
Miraculously, however, I stumbled onto the best phlebotomist ever! She did the cleanest, quickest, most painless draw I’ve had in years. It sounds kinda sad, but I’m more excited to find an awesome phlebotomist than I would be to find a great stylist. And boy, could I use a good stylist…
Anyway, the Amazing Phlebotomist drew 3 large and 3 small vials – the most I’ve ever had done at one time – and I didn’t pass out! I think part of it was the Amazing Phlebotomist, and part was having taken Ativan beforehand. I’m much less likely to have a panic attack when my blood serum levels of lorazepam are just peaking. 😉
Some of those 17 tests are standard ongoing monitoring, like verifying that my liver is still working alright and critical vitamin levels are OK. But the rest is taking a closer look at reproductive hormones.
Therein lies the Insidious Grain of Hope.
At a recent 4-month checkup on polycystic ovaries, there had been no improvement in the large cysts from hormonal birth control, so the GYN just had me go off it entirely. My PNP was puzzled about that – the pill had substantially improved cramps and acne (clearly suggesting hyperandrogenism associated with PCOS) so it would have made sense to try a different pill that might work better. Personally, I think the GYN doesn’t want to be bothered to dig any deeper. She probably thinks I’m just crazy.
The PNP, however, seems pretty convinced that PCOS may be one of the root issues. I can’t help but agree. What I can’t guess is whether it’s PCOS and bipolar, or just PCOS. After 7 months trying to get that question resolved, I’d guess “both” but who knows? The hormone levels from these tests will likely get me referred to a reproductive endocrinologist.
In the meantime, this is-it-isn’t-it thing is driving me up the wall. How can I accept and deal with these problems if even the doctor hasn’t fully bought into the diagnosis? At the same time, I just can’t ignore the possibility that it may be entirely hormonal (with a little neuroticism.) Although I’ve struggled with acceptance all along and this is just making it harder, it seems we’re keeping that insidious little grain of hope alive for awhile longer.
Last week I had a transvaginal ultrasound to take pictures of my internal lady parts to ascertain whether polycystic ovary syndrome (PCOS) is really an issue. I won’t regale you with the details, but it’s an easy procedure.
The results? My ovaries are polycystic. They are covered in cysts, some of them large enough to require ongoing monitoring. If they don’t change in 4 months (it’s normal for them to go away after a few weeks), I’ll probably have to get a biopsy to rule out ovarian cancer. But the odds of that are slim and I’m not worried about it right now.
The gynecologist reviewed the sonograms and my endocrine lab results with me. Notably, it’s possible to have polycystic ovaries but not PCOS. However, she pointed out that my DHEA levels are abnormally high, which does suggest PCOS. High DHEA causes hyperandrogenism and contributes to insulin resistance, and can be caused by stress, depression, and PCOS. The GYN had some additional blood drawn to check some other details, among them insulin and cancer antigen (CA 125) levels. I’ve had low blood sugar problems since my teens, and hypoglycemia can be caused by insulin resistance (aka metabolic syndrome).
There are clearly a few more details to evaluate and I appreciate the thoroughness, but I’m glad I pushed for the ultrasound. I gained new respect for the GYN when she said that diagnostic criteria come in books and we shouldn’t fit the patients to the books, but rather the books to the patients. Rock on, holistic Indian gynecologist!
I said that I’m willing to try hormonal birth control, so I have several sample packs of a very low estrogen pill. I waited to consult with the psych nurse before starting them because The Pill interacts with Lamictal, so I wanted to make sure that was not going to cause problems..
Hormonal birth control might help reduce the cysts and reduce the excruciating cramps. It could make acne worse (or better) and cause weight gain (or not.) It might also worsen mood swings – or make them better. Last time I took Ortho-Tricyclen, I gained 30 lbs in 2 months and had extreme mood swings. The pill I’m trying this time, Lo Loestrin Fe, has only about a quarter as much estrogen as what I took back in the mid-90’s, so perhaps it won’t cause problems. There’s no way to know until I try it. So today the experiment begins – wish me luck.
By the book, I have polycystic ovaries and symptoms of both hyperandrogenism and insulin resistance. So despite having normal periods, the evidence is mounting in favor of a PCOS diagnosis. Lovely, eh?
As Mr. Chickadee asked, what does this mean? It remains to be seen; the bottom line is, I have no idea what to expect, except further experimentation with meds. Regardless, I feel like I’m on a course that will get me some more answers. One way or another, I’ll learn more about how my body is functioning, and that empowers me to improve my lot.