News Day Tuesday: Acronyms! (Or: MDMA for PTSD)

Good morning, readers!

School started last week and there’s been a lot going on in my life on the personal side–my 93-year-old grandma, who essentially raised me as her own for most of my childhood, has been ill and I’ve once again been dealing with anticipatory grief.

Anyway, on a happier note, here’s some news for you about PTSD. (And it’s literally happy–it’s about Ecstasy!)

In a nutshell: those lovable FDA officials just granted MDMA “breakthrough therapy” status as a potential treatment for PTSD. Clinical trials will (hopefully) be easier to come by now, and I am very much looking forward to seeing how this develops.

Important distinction: MDMA isn’t FDA-approved, but this is a huge step in a very promising direction.

Right now, PTSD treatment options are super-limited. My brand is pretty wicked, but my only option for dealing with the symptoms is lorazepam/Ativan. I count myself lucky that I only have depersonalization/derealization, anxiety around crowds, and the occasional nightmare. It could be a lot worse. I’ve written extensively in the past about my experiences with dissociation (hence the name of the blog), but like most things, you get used to it.

But it’s not something anyone should have to “get used to.” None of us should have to accept the symptoms as our “new normal,” and for many, the symptoms are debilitating. That pretty much goes without saying (though of course, I decided to say it anyway).

I recently completed a research proposal for one of my summer classes, and while it was a painful process for someone who’s not a big research fan, it was definitely eye-opening. There has been shockingly little research done on depersonalization/derealization; most of what I encountered deals with “dissociation” in broader terms and the individual disorders are either not specified or are all lumped together in a mass that ultimately provides no insight about the actual conditions.

Anyway, that’s a post for another day. What I’m getting at is that PTSD is an incredibly complicated beast. While some symptoms are consistent, it never looks the same in two different people. Anecdotally, the symptoms can look different at various stages in a person’s life.

Seven years ago, I was having flashbacks (not the dramatic Hollywood kind where you’re literally in the memory–the kind where you sort of space out and the memory plays out in your mind’s eye while you’re pretty much unresponsive to the real world). Then, in 2012, the flashbacks stopped and the depersonalization/derealization got its hooks into me and has been hanging on for dear life ever since.

Like I said, you get used to it. The pain fades. You adjust to never really feeling “real,” to being in this perpetual dreamlike state. When it spikes, I try to welcome it as a new adventure and pay attention to what feels different without getting anxious or judging it as “bad.”

Still, it would be nice if there was something out there that could help just a little. I’ll be keeping my eye on the MDMA  breakthrough and keep you posted on further developments.

In the meantime, readers, what helps with your symptoms? Grounding exercises are one of my favorite things to do if I start to feel anxious. It’s less tedious than counting things.

News Day Tuesday: Bipolar Awareness Day!

Happy Tuesday, readers! Today (October 4th) is Bipolar Awareness Day, so I wanted to share an article with you that outlines the basic symptoms (for the uninitiated, as I know there are some new readers here) as well as what’s on the horizon in terms of treatment.

First of all, let’s hear about what bipolar disorder actually is. I’m referencing bt.com for the purposes of this tidbit, as the article I found gives a really great Reader’s Digest condensed version of the illness.

National charity Bipolar UK characterise the condition as “a severe mental health illness characterised by significant mood swings, including manic highs and depressive lows”, and note that, “the majority of individuals with bipolar experience alternating episodes of mania and depression”.

According to this article, it takes 10.5 years on average (in the UK) for people with bipolar disorder to be properly diagnosed. The National Depressive and Manic Depressive Association (NDMD) paints a similarly grim picture: it can take ten years or more for a diagnosis to be reached, and 69% of cases are misdiagnosed.

What are the symptoms?

There are two sides to bipolar: mania and depression.

During a bout of depression, it is possible to feel: grumpy, without hope, guilty, self-doubting, suicidal, pessimistic, worthless, lacking curiosity and concentration.

And with mania: elation, full of energy, ideas and plans, easily distracted, feeling invincible, risky behaviour including spending huge amounts of money.

Both can feature: lack of appetite, insomnia and delusions.

-bt.com

My experience began very early. I remember fits of agitation and depression as early as eight years old, which at the time was chalked up to the incredibly rough hand I was dealt–a broken home, a mother who struggled with bipolar disorder herself as well as alcoholism, extreme bullying, and persistent nightmares (which were later diagnosed as a feature of PTSD). NAMI states that rapid-cycling bipolar disorder, the most severe form of the illness, seems to be more common in individuals who begin exhibiting symptoms early in life.

From NAMI.org:

Early Warning Signs of Bipolar Disorder In Children and Teens

Children may experience severe temper tantrums when told “no.” Tantrums can last for hours while the child continues to become more violent. They may also show odd displays of happy or silly moods and behaviors. A new diagnosis, Disruptive Mood Dysregulation Disorder (DMDD), was added to the DSM-5 in 2014.

– See more at: http://www.nami.org/Learn-More/Mental-Health-Conditions/Bipolar-Disorder/Overview#sthash.l0XKtkSy.dpuf

When I was eighteen, I decided to see a therapist and psychiatrist for the intense mood swings that had plagued me for most of my life. I was initially told that my deep depressions were the result of PTSD. I was prescribed fluoxetine (brand name Prozac), which only made the agitation worse. And I was still depressed.

At 22, I relocated to Wisconsin and began the search for something, anything, that would finally help me feel “normal.” The misdiagnoses continued: major depressive disorder, for which I was prescribed Abilify and trazodone. I felt amazing on Abilify for about two weeks, and then I crashed. Trazodone made me a zombie. (Note: It is not atypical for antipsychotics to be prescribed to treat both MDD and bipolar disorder.)

Bipolar disorder is most often misdiagnosed in its early stages, which is frequently during the teenage years. When it is diagnosed as something else, symptoms of bipolar disorder can get worse. This usually occurs because the wrong treatment is provided. Other factors of a misdiagnosis are inconsistency in the timeline of episodes and behavior.

-healthline.com

When I was 24 and in my first “adult job” with health insurance, I found a wonderful psychiatrist who, over the course of several sessions, examined my family history and asked very specific questions to find the root of my illness. At first, I didn’t even think to mention my “up” periods, because even with the agitation and sleeplessness, I actually felt good–and no one goes to the doctor when they’re feeling well. But upon deeper probing, he came to a conclusion: first bipolar II, then, after further investigation and a few weeks of mood tracking in a journal, rapid-cycling bipolar I.

That first year was rough. I cycled so frequently that the days were exhausting. One day, I bounced between depression and mixed episodes several times in a single 24-hour period. Slowly but surely, the medications my doctor had prescribed (venlafaxine/Effexor, lamotrigine, and lithium) began to take effect. I began to stabilize. There were no more florid creative periods, but I was also able to sleep for more than an hour a night for the first time in weeks. My misery began to ebb, and though it didn’t disappear completely (a dysfunctional marriage contributed, among other things), I began to feel like a person again instead of a defective thing that needed to be turned off and fixed.

Aside from pharmaceuticals, NAMI’s website mentions cognitive-behavioral therapy, psychotherapy that focuses on self-care and stress management, and, in rare cases, electro-convulsive therapy (ECT). Learning to recognize the triggers for each type of episode is key; one suggestion offered by the numerous therapists I’ve seen over the years is mood tracking/journaling.

However, I had to stop at one point because, in the heyday of my illness, I began to obsess over the cycles, sometimes tracking up to ten or eleven times a day. Instead of the journaling soothing my mind, I began to worry that I was untreatable. I found my mood journal during a recent move and it was difficult reading, to say the least. But it was also a reminder of how far I’ve come and how much my quality of life has improved since receiving a proper diagnosis.

These days, I’m doing much better. My medications have been adjusted slightly to accommodate the deep depressive episodes I’m prone to during the fall and winter months, but I am proud of myself for being able to recognize that the winter storm was a-comin’. Three years ago, I would not have been able to see the symptoms for what they are: a warning sign and a signal that I need to not only keep up with my medications, but to practice good self-care. In the past, I saw fall and winter as something awful that I had to endure. Now, I realize that I can still enjoy life even when the days begin to get longer and darker. The seasons are no longer a metaphor for the overall “climate” in my head.

How long did it take for you to receive a proper diagnosis, readers? Are you taking care of yourselves as winter approaches? I hope you’re all doing well and staying healthy and safe. And spread the word–this illness is massively misunderstood, even by mental health professionals, so it’s our job to reach out and counter-strike against the misinformation and discrimination.

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News Day Tuesday: Local Mental Health Resources

Good afternoon, readers! This time, let’s talk local resources for mental health care.

I saw a wonderful counselor through the Johns Hopkins Student Assistance Program (which I’m eligible for because my significant other is currently a student). I’ll share more of the personal details in a post later this week, but the counselor I met with gave me some information about local resources I had no idea existed, and I’d like to pass those on to you. I feel they’ll be particularly useful to anyone in the Baltimore area, but I’m sure there are similar programs throughout the country.

First is Sheppard Pratt. Being new to the area, I was unfamiliar with this hospital, but they have a program specifically designed to help people dealing with all sorts of trauma.

The Trauma Disorders program at Sheppard Pratt specializes in dissociative disorders and CPTSD, which is exciting because I had no idea these types of programs existed anywhere. They certainly weren’t a thing in the Midwest, where I’m from. It’s an inpatient program, which isn’t a good fit for me for a number of reasons, but I plan to reach out to see if they know of any good outpatient therapists who are well-versed in these issues.

It’s comforting to know that there are facilities that offer support specifically tailored to complex post-traumatic stress disorder, which can present challenges to many therapists. I found one therapist during my time in Madison who seemed to know quite a bit about PTSD, including my dissociative symptoms, but she went on maternity leave shortly after I began seeing her. My subsequent searches for therapists was largely unsuccessful, which is not a negative reflection on any particular counselor–as I said, it can be a tricky affliction to effectively treat. I’ve been told that because of the depth of my dissociative symptoms, I’m not a great candidate for EMDR, which eliminates one of the most widely-used techniques for treating PTSD.

The second resource I learned about last Friday is the Baltimore County Crisis Response, which offers not only crisis intervention (as the name suggests), but also a 24-hour hotline and–this is the most exciting part–one-time psychologist and psychiatrist consults, which are particularly useful for people who are in a transitional period and looking for providers in the area but need refills of medication or therapy. That’s right, readers; there’s actually a place you can go for those all-important refills you can’t get anywhere else, which means no more rationing of medication to make it through.

The counselor at JHSAP was also kind enough to email me a long list of references for therapists in the area. Admittedly, I’ve been procrastinating a bit and haven’t gotten around to checking them out, but it’s on the list for this week.

Are you aware of resources and programs in your area, readers? Are they easy to locate, or do they require a bit of digging?

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News Day Tuesday: New drug for PTSD!

News on mental illness (aside from the usual stories about police brutality and the fact that mental illness physically alters your brain) has been somewhat scarce lately, readers. However, I did manage to scare up an article about a new drug for PTSD called TNX 102 SL, which is absorbed sublingually (under the tongue, like lorazepam and other anti-anxiety meds) and reportedly helps with some of the more disruptive symptoms of PTSD, like arousal/startle response, anxiety, and negative thoughts.

The drug is related to a muscle relaxant called Flexeril. I’ve heard of muscle relaxants being used to treat startle response in the past, but I’ve never tried anything of the sort before. I typically rely on lorazepam to control acute symptoms, like when I’m out in a crowded public space and begin to feel the good old irritability and hypersensitivity to sound kick in.

I’m pretty excited that new treatments are even being tested for PTSD, honestly. The startle response is definitely the worst symptom for me–any sudden noise, no matter how small, can provoke an ear-piercing shriek and a huge bump in my heart rate. And because I have chronic pelvic pain that’s partially caused by trigger points, the instinctive tensing makes the pain multiply, which makes me more miserable, and it becomes this whole endless cycle that’s really hard to break.

I’m also hopeful that some new treatments that help with sleep but don’t leave me a groggy mess the next day will pop up. I sleep very lightly now and have a hard time falling asleep. I usually use either lorazepam (if the insomnia’s not too bad, though I need at least two milligrams to get a good night’s rest) or quetiapine/Seroquel if I’m really sleep-deprived. However, even though those drugs work in the short-term, I end up sleeping way longer than intended and am basically a zombie the next day.

Readers, what do you think of this drug, given what limited information we have so far? Would you try it? What do you use to cope, either medically or psychologically?

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