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

a cure for what ails you, anxiety, dissociation, medication, News Day Tuesday, personal experiences, ptsd

Good morning, readers!

School started last week and there’s been a lot going on in my life on the personal side–my 94-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.

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News Day Tuesday: New treatment for PTSD?

a cure for what ails you, News Day Tuesday, personal experiences, ptsd, rapid-cycle bipolar disorder, three hopeful thoughts

Good morning, readers!

This week, I rustled up an article about some exciting developments in PTSD research.

Basically, scientists are looking at glutamate (one type of those fun little things in your brain that sends signals) and how alterations in glutamate levels affect PTSD. What this means for us is that PTSD is now being studied on a molecular level, which means that new treatments could be on the horizon!

My PTSD is generally well-controlled, as far as “controlling” it goes. I’m still mad-jumpy and don’t have a good time in crowds (the dissociation spikes, and sounds that hit my left ear first seem to make it worse, though my previous psychiatrist had no idea why). I still feel depersonalized/derealized every single day, though the level of detachment varies widely. I haven’t been able to pinpoint exactly what it is that makes it better or worse, but admittedly, I’ve been super lazy about charting it.

However, I’m sleeping soundly for the first time I can remember. I think a lot of us can relate to the hypervigilance and, by extension, light sleeping. Loud noises still startle me awake and my fiance sometime scares the bejeezus out of me by touching me–gently–to wake me up. But! and this is good news–the sounds of the cats wheezing or vomiting or fighting don’t wake me in a panic. It’s more of a “God, this again?” reaction, which, while not fun, is better than waking up with a racing pulse and momentary confusion about where I am.

As far as journaling about symptoms goes, I’m still trying to figure out a system. How many times in a day should I note what’s going on upstairs? I don’t want to become obsessive about it, as I did with my mood journal when I was first beginning treatment for bipolar disorder. At the same time, I want to make sure I have an accurate log of my symptoms and the events that may have caused an increase/decrease in the weird floaty feelings of unreality.

That being said, it’s sometimes hard to notice the changes because they’re subtle. Because this has been chronic for six years now, it often takes an absolutely massive spike before I notice anything is off. On a related note, I often don’t notice the symptoms decreasing because hey, it’s my “normal” now.

Any ideas or tips, readers? Should I follow the standard day/time/preceding events/level (on a scale of 1-10) format I’ve used in the past for mood tracking? What system(s) do you use?

I look forward to hearing from you! I’ll see you next week and as always, stay safe and remember to say one nice thing to yourself every day. Today I have two: “My new DIY manicure is bangin'” and “I am surviving my fiance’s work trip with zero negative emotions!”

It’s important to focus on the positive, especially when our emotional weather is often stormy.

28.

Authoress, ptsd, three hopeful thoughts

Today is my 28th birthday. I generally don’t put much stock in them–it’s just another day when you get past a certain age, in my opinion. But my fella made today really special (breakfast and a mini scavenger hunt to my gift!), so it’s the best birthday I can remember.

Birthdays are significant to me for one reason: they’re proof that I’m still alive. It might seem silly to most people, but as quite a few of you know, those of us afflicted with PTSD tend to also be plagued by the belief that we’re just not going to live very long.

For me, this feeling of dread started when I was in my mid-teens. I thought I wouldn’t make it to sixteen, then nineteen, then twenty-one…and here I am at twenty-eight, having endured three lifetimes worth of horror and survived it all. Every year on this date, I take a moment to marvel at that.

It’s kind of incredible. And you, my readers–all of you–are incredible for hanging on and being alive. Remember that when the bleakness starts to press close and you feel like you’re buried above ground. You are still here, and you should be so proud of that.

Until next time, readers, stay safe and lovely.

 

News Day Tuesday: Local Mental Health Resources

a cure for what ails you, abuse, anxiety, medication, News Day Tuesday, ptsd, therapy, three hopeful thoughts

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: Childhood Mental Illness

News Day Tuesday, ptsd, rapid-cycle bipolar disorder, relationships, stigma

Good afternoon, readers! This week, I’m featuring an article from NPR related to the early detection of mental illness in children. Child psychologist Rahil Briggs states that half of all children show signs of mental illness before age 14.

On a personal note, I began experiencing symptoms of post-traumatic stress disorder around age seven or eight. My mother had gone to prison when I was six years old, and I went twice a month to visit her at the correctional facility that was several hours from my home. By this point, nightmares were a common occurrence–I’d had them regularly since age five–so my guardian and other relatives didn’t think much of it when the frequency increased slightly after these visits began. There was some talk of finding a therapist for me, but the idea was abandoned.

One of the earliest memories I have of PTSD-related symptoms was one night when I was attempting to play chess with my aunt in the basement of my grandmother’s home, where I lived for the majority of my childhood and adolescence. I began to feel odd, detached from my own body and my surroundings. I remember saying to my aunt, “Do you ever feel like you’re in a dream?” because that was the only way I could describe it at the time.

She had no idea what I was talking about and gave me a strange look, a reaction for which I can’t exactly blame her–if I weren’t “in the know” about the symptoms of PTSD, I would have found such a statement very strange.

As a child, I was generally calm and reserved, but I did occasionally “act out.” I would get panicky and anxious, a tiny ball of pent-up energy and what I can only describe as rage at nothing in particular. That energy had nowhere to go, so it was directed inward, causing lasting damage before finally exploding outward. I would storm around the house in a dark mood, only to erupt moments later in a fit of crying so intense I felt like I couldn’t breathe.

My family was helpless to help me because they didn’t understand–or perhaps didn’t want to accept–the reality of what was happening to me. Bipolar disorder, which has spread throughout the family tree like Spanish moss, was beginning to wreak havoc on my still-developing brain.

Childhood mental illness is a tricky subject. It’s hard to recognize, and it’s terrifying, both for the sufferer and the child’s loved ones. It can strike anyone at any time, regardless of socioeconomic class or education level or how strong the family’s ties are. Therefore, it’s especially important for parents to remember and impress upon their children that it is an illness like any other and is not a moral or character judgment. It is not evidence of parental failings or proof that the child has not been loved enough. It simply is, and the earlier it is detected, the earlier treatment and healing can begin.

Did you start showing signs of mental illness in childhood, readers? How did your family/caregivers react?


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News Day Tuesday: Press Release – CPTSD.help

News Day Tuesday, ptsd, stigma, three hopeful thoughts

Greetings, readers! It’s News Day Tuesday once again, and I have something exciting to share this week. A little over a week ago, I was approached via email by Adriaan Bouman,  a web developer from Holland who’s created a new online community called CPTSD.help. The following is the press release I received:

FOR IMMEDIATE RELEASE:

CONTACT:
Adriaan Bouman
CPTSD.help
info@cptsd.help

https://cptsd.help/

Introducing CPTSD.help

– Community-based recovery –

Complex Post Traumatic Stress Disorder: Knowing the name of it helps. Knowing that you’re not alone helps even more. CPTSD.helpis a secure, online, real-time chat platform where members can share experiences, offer support and discuss recovery topics in a safe space.

“Recovery can only take place within the context of relationships; it cannot occur in isolation.”

– Judith Lewis Herman

While C-PTSD is not yet recognised within the Diagnostic and Statistical Manual of Mental Disorders (DSM), it is defined as a psychological stress injury, resulting from continuous or repeated trauma over which the victim has little or no control, and from which there is no real or perceived hope of escape.

Web developer, Adriaan Bouman, created this open-source chat site not as a substitute for traditional therapy, but to establish a community that could help others on the road towards recovery. “In my own personal discovery and research I found that there are three main phases,” Bouman explains. “The first is diagnosis: identifying your condition as C-PTSD. The second phase is the journey towards recovery: a very personal journey. And the third is the period after recovery.”

This platform is for the many individuals within the middle phase. It’s for those who have identified their condition and are embarking on the journey towards recovery. Although that journey is always incredibly personal, it does not have to be taken alone.

CPTSD.help also links to many of the online resources that already exist, but what sets it apart from the rest is that its interactive nature encourages the dialogue necessary for understanding, grappling with, and hopefully overcoming C-PTSD. Discussion topics range from managing emotional flashbacks, finding the right therapist and mindfulness, to relationships, family, work, and even politics and philosophy.

Counsellors and therapists are also encouraged to join the community,” states Bouman. “The future aim is to have regular online Q&A events with experts; not only therapists, but also community members who have recovered from C-PTSD.”

– MORE –

While we may not know how many people suffer directly from the condition, we do know that there are millions out there who have been exposed to trauma on a continual basis. CPTSD.help allows us the opportunity to share valuable information, gain insights, and develop a community voice to demand a space in the DSM in the near future.

ABOUT CPTSD.help

Adriaan Bouman is a freelance front-end engineer and web developer from Holland, working out of Barcelona. He is not an expert in C-PTSD. His vision is simple: by building the platform for community engagement and support, those experts will eventually arise and help guide those still starting their recovery journey. No stranger to the power of online communities and international collaboration, Bouman brings a wealth of expertise in terms of digital and user experience design, to ensure CPTSD.help remains a secure and interactive platform for safe chat.

– END – 

I’m intrigued, to say the least. In general, I don’t jump into online spaces about mental illness because I usually go online to distract myself from whatever’s going on inside my head. However, this community is one to watch and I’m definitely going to be checking it out.

What communities are you into, readers? Have you had any experiences with targeted sub-Reddits (r/bipolar, for example)? What are your thoughts on an online community that includes patients as well as mental health professionals?

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News Day Tuesday: New drug for PTSD!

a cure for what ails you, medication, News Day Tuesday, ptsd, three hopeful thoughts

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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Numbers.

medication, ptsd, stigma, therapy

I started seeing a therapist when I was eighteen and saw my first psychiatrist around the same time.

Six years later, we’re on to therapist #7 and psychiatrist #3 and I feel like if this isn’t the combination that finally does the trick…

Image

I’m 24. I feel that I am both too old and too young to be going through this tired old song-and-dance again. I am tired of feeling like I’m tormenting my husband (though he insists that while watching me suffer is upsetting, my illness is not a burden) and tired of trying to keep it all together. But falling apart is completely terrifying, which is why I get up every morning and put on the pretty dress and the high heels and the makeup and the perfume instead of doing what I really want to do, which is stay in bed and cry and drink or take assorted drugs until my mind is a big, blissful zero.

Because it’s a slippery goddamn slope and I’m too old to be such a mess but too young to give up.

Also, this is why having chipped nails or unshaven legs bothers me so much. It might seem silly to care so much about my appearance when there’s so much noise inside my head–some days, it is like having ten radio stations tuned in at the same time–but it makes me feel less sick. If I can be pretty and charming, even in all my infinite, glorious messiness, part of me believes that I’m going to make it through this.

But first I need to buck up and get over the “I don’t want to live like this anymore!” weepiness that’s been heavy on my mind lately. All these pills, man. All this therapy. All these bills that I keep putting off, paying in tiny installments because I know I’ll never be finished.

And maybe that’s okay.

Another new beginning.

medication, ptsd, stigma, therapy

I’ve decided to use my writerly skillz to document my latest round of treatment for the PTSD and major depressive disorder with the end goal of potentially selling excerpts or actually finally finishing a “book.” I realized that a memoir in the traditional sense would be the wrong move for me right now, since there’s no real resolution yet and I’m not ready to relive all the trauma. I also thought that writing it while I’m undergoing treatment–almost like a diary, but more polished and meant for others to read–will help me gain new insights into my conditions and my treatment as well as helping others understand what living with these disorders is actually like (hint: it’s a daily struggle). Below is the small bit I’ve written so far. As always, comments and questions are loved!

I meet Susan for the first time on a cool, rainy day in early June. We make polite small talk for a few minutes before she asks why I am here. My voice is robotic and well-rehearsed as I summarize nineteen years of trauma in under a minute.

“You’ll like Susan very much,” the on-call therapist had said to me over the phone a week before, trying in vain to calm me down during my first-ever panic attack. And I do–she is young and stylish, hippie-chic in her embroidered flats and colorful scarf. She gazes at me with concerned eyes as we begin discussing my dissociative symptoms. She asks me to describe what a typical episode of derealization is like versus depersonalization,  how long they typically last, how I know I’m having one. I explain the unnerving disconnect from my surroundings and between my mind and body from the moment I wake up each day until I go to bed late each night. This disconnect, this disquieting dreamlike feeling that has existed in varying degrees each day for the last year, is back in full force as I ghost my fingertips over the creamy leather of the armchair, my brain taking a second or two to catch up with the physical sensation, just as it always does.

When Susan speaks, her voice is solemn. “Well, it’s not great.”

I force a laugh in an attempt to chase away the sick churning that has started in the pit of my stomach at her words. It doesn’t work. “Yeah, that’s probably really bad,” I agree, trying to keep my voice casual.

“No,” she replies gently. “I meant that the prognosis doesn’t look great. A whole year of these dissociative symptoms without a break is pretty extreme.” I bite my lip and flick my eyes toward the ceiling, struggling to steady my breathing and ward off tears. This helps me calm myself and I fix my gaze once again on hers, fingers interlaced around one bare knee.

I mention a therapist I saw in June of 2012 who was disturbed by my “flat affect” and thought that any sign of emotion–even uncontrollable sobbing, which I frequently did in her office–was good. She pushed me to reveal too much too soon, and instead of having a dissociative episode that lasted a day or two, I’ve been plagued by feelings of unreality ever since. There is no relief for me, and in this moment, I feel that there never will be, that there is no hope, that the only escape from all this numbness will come when I finally kill myself. But I convince myself that I need to stay positive and tell her that while I understand the prognosis is grim and I understand that we could potentially make things much worse, I still want to try. Any chance at relief is better than living like this.

Susan explains that my defense mechanisms, which were very helpful and kept me alive when I was a child, were likely highly triggered when I was forced to relive the trauma in one massive chunk during therapy. This, she says, is what will make our therapy difficult. She will need to be constantly vigilant, always looking for “cracks” in the facade, little slips of the tongue or small clues that give her an opening into my psyche. If she can get in that way, she says, we can work around the defense mechanisms enough to make progress. As she speaks, I imagine her as a cat burglar dressed in black, shining a tiny pen light into the darkest recesses of my mind. The work will be very slow and therapy will be very difficult, but I mustn’t get discouraged. And above all, we need to trust each other. I need to tell her when I’ve had enough, or perhaps set a limit–fifteen minutes of talking about one topic before “changing the channel” to avoid triggering my defenses is one suggestion, and I readily agree to it. I am so desperate for relief, any relief, that I am willing to agree to anything.

The next day, I see my psychiatrist again. I tell her in a flat, quiet voice how I feel I’m having a relapse of my depression; the Effexor doesn’t seem to be working all that well, and it’s been a year since I last had a complete absence of dissociative symptoms. As I recite these facts, my eye are fixed on the large digital scale sitting in the middle of her office. We talk about different treatment options–she is in favor of Abilify, but I balk at the drug when I learn that there is no generic equivalent. I’d been on Cymbalta for a few months in late 2012 but after I reached my maintenance dose, it stopped working, which was probably just as well; I couldn’t afford the $40-a-month price tag on top of my other bills and medications. We settle on risperidone, which my psychiatrist tells me is a “mood stabilizer” that should help alleviate some of the dissociative symptoms as well. Since it is to be taken at night, she says it may even help me sleep, though she warns me that it can cause weight gain.

She invites me to step onto the scale when I confess that I don’t know my weight; at this point, I haven’t weighed myself in several months, knowing from years of experience that it’s unlikely to go down no matter what I do. Besides, I have just gotten comfortable in my own skin again and don’t want to get hung up on a three-digit number when I have more important things to worry about, such as my rapidly declining emotional state.

I watch, mute, as “154.5” pops up on the little screen in fat black letters. I look at her and shrug, and this time I don’t even have to feign disinterest because for the first time in four years, the number means nothing to me. I sit through a brief lecture about how I’ll need to be re-weighed when I come back in a month, because even a few pounds gained can be a red flag that my body doesn’t like the drug and is likely to put on even more weight if I remain on the risperidone.

She explains that sometimes it takes a while to find the right combination of medication. I nod, we chuckle–silly brain chemistry!–and she sends me away with three prescription sheets and a lopsided little smile. I realize that I’ve just been prescribed an antipsychotic, but it doesn’t bother me. My interest in psychology began when I was a sophomore in high school and continued all the way through college; the term “psychotic features” and the names of various drugs don’t feel scary or threatening, but instead seem like familiar old friends. It occurs to me that perhaps I should be annoyed that my doctor didn’t simply call a spade a spade, but I have other things to focus on, such as navigating through the fog that descends every morning when I wake up.

I begin to see my defense mechanisms as a dragon, something living in the darkest recesses of my mind that I must be very, very careful to tiptoe around; I know from years of experience that waking them up, no matter how innocent my intentions, can have severe consequences.

I spend the day after my psychiatry appointment walking around in a daze. As I apply my makeup before work on Friday morning, I watch my husband in the mirror and jokingly tell him that it feels like being high without the benefits of actually being high. He smiles, but there’s something serious in his eyes; he knows it’s not a joke at all and that this weird detached feeling has become my new reality. It’s difficult for me, but it’s more of an annoyance than anything–something else to deal with. I can’t imagine what having a sick wife must be like for him. I worry that I’m turning him into a tragic Leonard Woolf type, but I feel helpless to stop it.