Back from Boston

And can I just say "wow". It was a whirlwind of a trip - we were only in Boston for around 24 hours. But I learned quite a bit - and can hopefully move forward in my recovery.

I'm still processing everything I was told, and probably will be for some time. A bomb of knowledge was dropped on me and, while some of it is just speculation, it's a lot for me to think about.

Let's start with this: I saw Dr. Brian Schulman at the Bipolar Clinic and Research Program at Mass General. I was sent to see him as a "second opinion". Basically, my psych doc (pdoc) has no idea what to do with me so he wanted me to see the big dogs - the guys who work only with bipolar patients. The appointment was 2 hours long and started with a thorough health and mental history (hubby was not in the office for most of the visit - only for about 30 min). He had me explain things about my past (my upbringing in an alcoholic home, my abusive ex, my father's death) in way more detail than anyone other than my therapist. He had me explain what my mania and depression were like, going over the big episodes and as many of the little ones as seemed relevant.

This lasted the first hour.

We spent only around 10-15 minutes going over meds - what I'm on currently (which he said is a good combo and he wouldn't change it) and what I've previously taken. My reaction to 2 meds (Latuda and Depakote) is highly unusual.

But we all knew that I was unusual.

And then the meat. Then he got to work. He pointed out that the most recent 2 diagnoses that I have been given (rapid cycling bipolar 2 and rapid cycling bipolar 1 with psychotic features) sent up a red flag. See, rapid cycling - true rapid cycling - is rare. (Rapid cycling is defined as having at least 4 distinct mood episodes in a year - each episode lasting at least 2 weeks). He said I didn't actually fit this criteria (while I've been told by my current pdoc, my new pdoc, my second opinion pdoc in Pueblo, and the docs at the hospital that I am rapid cycling). He said that since my hypomanic and mixed states (except for one in October/November 2013) don't typically last for more than a few days, they can't be considered a major mood episode. Hence, I'm not truly rapid cycling.

He told me that 9/10 times when someone comes to him with a "rapid cycling" diagnosis, something else is going on too.

My something else?

Chronic PTSD.

From my childhood. From being raised in an unpredictable, often unstable home with my mom. From my dad, who was my safety net, my confidant, and my strength, dying so young (he was 43 and died from lung cancer). From being in an abusive relationship. From being an RN (yeah - RNs actually build up chronic PTSD - we see some fucked up shit, y'all).

Dr. Schulman said that people with chronic PTSD react differently than say a war veteran with PTSD or a one time rape victim with PTSD. With the acute PTSD, you think of flashbacks, nightmares, all of that stuff. Not so with chronic. We don't adhere to the typical fight or flight - instead, we freeze. We either become numb, or we overreact emotionally.

Now, think about this. I have bipolar disorder. A mood disorder. Characterized by exaggerated moods. And chronic PTSD, in which I overreact emotionally. Let that sink in. I did.

Dr. Schulman explained that the 2 almost feed off each other and it's hard to tell which is which - which mood change that I have is from the bipolar and which is from the PTSD. He said that in the brief time he'd talked to me he saw only 2 "true" manic episodes (meaning they lasted 2 weeks or longer) - one in college and my one in October/November 2013 (this alone earns me a Bipolar 1 diagnosis). My hypomanic episodes (which can last hours to a day or two) could be bipolar mood shifts or PTSD overreactions. Or both - acting off one another.

So, in other words, it's complicated.

My medications, he explained, do an amazing job at warding off the big bipolar mood swings - the true mania and sometimes major depression - but do nothing for the little swings. Which is why changing medications all the time trying to manage these swings is ineffective (and mimics the unpredictable environment I was raised in, he pointed out, which can trigger more cycling).

We've been doing everything ass backwards it would seem.

So what helps these little swings? Psychotherapy. He said I had a lot of work to do in that area, in going over my past. Which, I know. We've spent so much time in therapy doing damage control and crisis intervention that we haven't spent much time delving into my past. I wouldn't even know where to start.

Now, there's the depressive side to this too, we can't forget that (especially since that's what I struggle with). I've had depression for as long as I can remember - 4th or 5th grade at least. And I always seem to have this underling depression, this black void in me that never goes away. Dr. Schulman believes that I also have Major Depressive Disorder - and that it's difficult to tell which depression is bipolar related, and which is depressive disorder related. So the depression is harder to treat. Most likely the constant underlying depression is depressive disorder and my more acute, suicidal depressions are bipolar related. But there's no way to know for sure.

Listening to all of this just kinda . . . clicked. It made sense to me. It seems very plausible. Dr. Schulman pointed out that some of this was speculation, based on the short amount of time we had to meet and talk, but that that was his professional opinion. Does that mean that this is a set-in-stone diagnosis/treatment plan? No. It most definitely isn't. This is another set of eyes taking a fresh look at my situation. This set of eyes just happens to be from a bipolar specialist. And what he said did make sense to me.

So I'm left with this - my diagnoses:
1. Bipolar 1
2. Major Depressive Disorder
3. Chronic PTSD

And work. I have a lot of work to do now. If Dr. Schulman is correct about my smaller swings, then it's all on me to manage them. And I've been doing a piss poor job at that because it's fucking hard, y'all. My mood swings, whether bipolar, PTSD related, or both, are unpredictable and difficult for me to manage - if it were easy, why the hell would I be going through everything I've been going through?

But hearing this, that all these little swings are most likely up to me to figure out and will probably never go away . . . that's fucking daunting. You kinda hold out hope that the right med combo will make it all better - and that's just not going to happen. He warned me that the weight of this would hit me - and might hit me hard. He even wanted to make sure I was seeing my therapist this week because of this. He told me to warn my hubby about it.

As I write this, I feel mostly numb. Mostly. Given the right trigger, I'd break down sobbing. I am so grateful that I had the opportunity to see Dr. Schulman. His opinion is by far the most different from any that I've received, but also the most comprehensive - it seems to take in the whole picture, whereas others are just about the meds.

At any rate, I have more of something that I've been lacking for awhile now. . .

Hope.

Oy vey

So here's some fun stuff. On Wednesday I had therapy. My therapy sessions are an hour long. Except for Wednesday. On Wednesday my therapy session was an hour and a half. With the last 20 minutes involving my psychiatrist.

Why?

So I wouldn't be hospitalized. I really didn't want to be hospitalized. I begged, through tears, to my therapist not to send me. That I could keep myself safe, that my hubby would keep me safe and that I couldn't hurt myself because it would only hurt my hubby and son as well.

I was having pretty strong suicidal ideation. To the point where, if I didn't have my hubby and son, I would have killed myself. There was no doubt in my mind. And my therapist knew this. But we put a safety plan in place and it was understood that if I started feeling worse I would admit myself.

My psychiatrist wants me to up my dose of Depakote from 1000mg to 2000mg - he doesn't think it's the cause of my suicidal ideation. Last night I went to 1500mg and this morning I paid for it with unrelenting grogginess. After 2 more nights I'll increase to 2000mg.

My moods have been . . . not good. Yesterday I had a panic attack during our charge nurse meeting. As in tapping feet/shaking/rocking panic attack. I did my best to stay unnoticed. That didn't happen. After the meeting one of the nurses approached my manager and pointed it out to her. I had to take a Xanax (well, 0.25mg, a quarter of a Xanax) to calm down and then give my manager an update on my mental status and explain what happened. Not a good way to start the day. And my day ended with a crash c-section that resulted in a bad outcome. Only 2 months since my last bad outcome.

I did, however, get some good news today. I have an appointment at Mass General on Monday, June 9th. My psychiatrist has been wanting to send me there for a year and a half and now I actually have an appointment - and I won't even have to miss any work. Fancy that!

I had gotten a second opinion from a med specialist 2 weeks ago, but Dr. C still wants me to go - always a good idea to have a backup plan in place (plus, I'm seeing the bipolar specialists in the mood clinic there).

Good things and bad things. Hopefully now there will start to be more good things. I like good things.

So here's something fun . . .

I had an appointment today with Dr. C which lasted waaaaay longer than normal - an hour rather than 20 minutes (I feel sorry for the people with appointments behind me). We're tweaking my meds again. And he's contacting a colleague that he'd like to have see me - a second opinion type thing on my meds.

But here's the fun part - while in my appointment, he got a phone call. A phone call from Mass General in Boston. They've agreed to take me as a patient for a consult. Only thing? I don't know when yet. Dr.C will be doing the scheduling - the appointment may be a month or two out - we don't know. But they agreed to see me, which is the hardest part of the whole process.

So it looks like I'll be going to Boston in the future. Go me!