a day with episodic mood disorder not otherwise specified

Today I asked my APN what her official diagnosis for me is, hoping (among other things) it might help me present myself more accurately on my blog. She confirmed that, especially based on my past response to anti-depressants, uni-polar “depression” doesn’t capture the whole picture of what’s going on. I guess she’s not sure what’s going on. To the extent that I do know, I have no idea what to call it. I was hoping she could give me an idea. But “episodic mood disorder not otherwise specified” just doesn’t have a good ring to it – even when shortened to “mood disorder NOS.” I might as well just say I have emotional issues. Well, almost. I have clinically-relevant emotional issues.

In other news, she decided to lower my Lamictal dose from 75 mg to 50 mg due to concern about possible side effects. On the one hand I’m glad she’s taking my concerns seriously and being cautious with the only brain and body I have. On the other hand, Wakana had suggested I should increase the dose – that the lower doses aren’t enough to be therapeutic – and I’d been expecting us to move in that direction. I guess there’s still the possibility of increasing the dose if that seems to be the best course of action; it’s probably better to trust the person who has the required training, certification, and experience to make decisions about this sort of thing.

But APN is talking about adding a new medication (that I’ve never taken or heard of before) to help fight the chronic lethargy I’ve been experiencing. I’m really not a fan of taking multiple medications. Even just being on one medication has me concerned about long-term effects and my ability to safely be a biological mother on my own terms someday. Let’s say I do experience side effects: how am I supposed to know which medication is causing them, or whether it’s an interaction between the two? More medications also means more risk of interaction with environmental factors, food, caffeine, and alcohol.

I may not be too thrilled with how today’s appointment went, but I still have confidence in my APN. She’s not just prescribing medications, she’s looking at the whole picture. She suggested I get blood work done so she can get a better picture of my physical health, including how it might be affected by the new medication she’s considering. She also re-encouraged me to have a sleep study done. Maybe if I do that, they’ll address the lethargy well enough that I won’t need to take a second medication! Finally, I appreciate that she asked me if I was seeing a therapist or would be interested in therapy. It shows she considers therapy to be an important part of treatment. She also encouraged me to work on setting boundaries, so I can distinguish between what I’m feeling and what others are throwing at me. That’s what most of the posts in this blog and the work I’ve been doing with Wakana are about, so I guess I’m on the right track. It’s just taking an uncomfortably long time to get where I need to be.

Psychiatry Strikes Back

I had my second appointment with the APN on Friday. It was at 4:30pm and I was a little late so I guess that played into it because it was near closing time but… she seemed very rushed. The hospital where I’m trying to schedule a sleep study needed more information and had called her, so she tried calling them back at the beginning of our appointment. They were probably closed for the day, so she left a message asking them to call her back… but I have no idea whether or when both sides will be available to talk in real time. She doesn’t seem to have time outside of appointments with clients to do anything relevant to their cases; I think that’s stupid and inefficient and a symptom of bigger problems in the U.S. “healthcare” system. But I digress.

I showed her the self-report measure she’d given me to track symptoms such as depressed mood, mood swings, irritability, food cravings, anxiety, sleep issues, difficulty doing things, and physical symptoms. I’d marked most items somewhere from “mild” to “severe” on most days. She asked questions about how I’ve been and family history of “mood swings” and filled out a form on the computer as I was answering her. She cut me off in the middle of trying to explain my family history, so she doesn’t have all the relevant information. At first she thought I’d never been on medication before; this freaked me out because I’d spent so much of our first appointment telling her about my experiences with the generics for Wellbutrin, Lexapro, Zoloft, and Buspar. I had to tell her a lot of the same information a second time. But she didn’t have any time to glance through my file before meeting with me, and there’s no way she could remember my specific case from meeting with me once a month ago. So I don’t hold it against her, personally … I just find it a bit difficult to feel safe working with someone under these circumstances. (And, well, she could have worded things a bit differently.)

Lacking the results from my blood work (I can’t find my copy and the doctor’s office has been closed every time I’ve called to have them faxed to the APN) and sleep study, aware of the problems I’ve had with medications in the past, and faced with some fairly severe self-reported symptoms, she said she would like to try putting me on Lamictal. I’d never heard of it before, so I asked what it was. It’s an anticonvulsant typically used to treat epilepsy but also bipolar. She said something about a possible rash and it takes a while to start working and you have to work up to the therapeutic dose slowly… at the time, it all sounded fairly terrifying. I’m not sure exactly what I expressed, probably a mix of anxiety and confusion, so she wrote the name of the medication down for me, told me to research it, and offered to meet again “as soon as possible.” Session over. I’d wanted to ask if she could refer me to group therapy for people with depression and anxiety, but there wasn’t any time for it.

I asked the receptionist for an appointment as soon as possible and she said the next available appointment is on September 26th! Another month. I … I can’t even comment on that. Another month before I even get to find out whether Lamictal might work for me … or I might be deathly allergic to it. Another month before I can even hear the name of another medication that might be worth considering. Hell, another month before I can ask her why she thinks it’s worth trying!

The receptionist made an appointment for me on the 26th, but also made a note to contact me if anyone cancels between now and then. I thought that was very considerate of her. It’s the same place Fox and I are going for our marriage counseling (which has been quite effective), so I can also check in with the receptionist before and/or after our weekly appointments. I appreciate her willingness to take that extra step to help me out. As frustrated as I was at the time, I also appreciate the APN encouraging me to research the medication instead of dismissing my concerns.

I haven’t been able to find anything particularly useful about Lamictal online, just a terrifying list of side effects. Most of the psychological side effects have become the norm for me, so I’m not too worried about them … I’m kind of “damned if I do, damned if I don’t” in that department. The thing that concerns me the most is that the online sources I’ve found so far claim Lamictal has only been found effective in preventing episodes of depression or mania, not treating current episodes. I really don’t want to take something that has the risk of adverse side effects if there isn’t any evidence that it might help me.

A friend of mine who has bipolar and works in a mental health setting told me that Lamictal is one of the bipolar medications that have been monitored (and found to be safe enough to continue using) the longest. It’s considered to be safe and effective, particularly for treating depressive symptoms. The severe side effects are very rare, so it’s unlikely I’ll experience them. Basically, I’d be crazy not to give this medication a try.

My friend also made a very good point: I’m not going to be able to have a productive, in-depth conversation with the APN. If I want to know something about Lamictal, I have to do my own outside research. I have to make my decision on my own, before I meet with her again. I already know the answer to the question, “What do I do if I get a rash or experience other severe symptoms?” – go to the emergency room. She won’t be available whenever it happens; I’ll have to wait a month to meet with her. So when I do talk to her, I need to ask the one thing I can’t get answered anywhere else, in order to make the best use of our limited time.

I’m going to ask her what the plan is for getting me started on the medication and adjusting the dose to find the one that’s effective and safe for my body. That way, we can work together to create one… or I can at least hear her thoughts and have a basic idea of what to expect. I need that in order to feel safe working with her.

If you’ve taken and/or know someone who has taken Lamictal, would you recommend it? Anything I should be aware of?

Can you recommend any resources that might help me make an informed decision?

Any thoughts about navigating the system?

Return to Psychiatry?

I just got back from meeting with an advanced practice nurse (APN) for a psychiatric evaluation. I like her a lot: she was down to earth and personable. I felt like I could relate to her and trust her. She made a real effort to listen to me and ensure that her understanding of my history and current situation was accurate. She took the issues I’ve had with medications in the past seriously.

She screened me for bipolar and OCD, but hasn’t made an official diagnosis. First she wants to see the results of the blood work I had done when I went to see my primary care provider a few months ago. She also gave me a prescription to get a sleep study done to see if my problem might actually be sleep apnea or another sleep disorder. It could be that chronic lack of restful sleep has been keeping my brain from functioning properly and causing (or at least contributing to) my depression and anxiety symptoms.

Finally, she sent me home with a self-report measure to fill in over the 4 weeks between now and my next appointment. Every day I get to rate symptoms such as depressed mood, mood swings, irritability, food cravings, anxiety, sleep issues, difficulty doing things, and physical symptoms. There are spaces to mark day of the week and whether I have my period. As I complete it, I’ll be making a graph; it’s pretty neat.

Perhaps best of all, she agreed to talk with Wakana to coordinate my care. I guess time will tell how well they can work together to help me.

To be honest, I have mixed feelings about the situation. There’s a part of me that’s disappointed because I don’t have medication to take and either (preferably) gain relief from or complain about. It’s basically more of the status quo, at least until the data from the sleep study has been analyzed.

The rest of me likes that the APN is proceeding cautiously and trying to gather as much information as she can before prescribing drugs that may do more harm than good. She seems to be thinking about what is best for me as a whole person, not what will be the most convenient. It may take longer than I’d like before I have a treatment plan that’s truly effective, but hopefully I won’t have any more false starts and stops with medication. I may have found a keeper.