Sticky: Guide to the blog

Latest Post: alternatives to 12 step and why addiction recovery is crucial to PTSD recovery

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This is sort of the "best of" section where I'll link to the blog entries people seem to read the most. Perhaps I ought to have a page on "What is PTSD" but lots of others have already done that, so I'll just my favorite, a glossary from the Sidhran Institute [link checked 7/12/20].

Two notes before we begin.  First, I am not a professional.  I have kept this blog to share my experience with PTSD, but I cannot help you directly if you are suffering from PTSD.  I only check in here intermittently and it breaks my heart to see someone plea for help and get no response.  Please, if you are in crisis, call 911.  If you are looking for treatment or direct help, please contact the Sidran Institute. They are an excellent resource and can help you find appropriate treatment.  If you are finding out about PTSD in yourself or another and want to know what my experience has been, read on.

Second, if you make comments that contain negative statements about people at various facilities by name, I will not publish them.  Stay general, and even say there are problematic people to avoid, but no names.  Probably best to leave out names of people you consider praiseworthy too.  Self-promoting comments or links to link farms or anything that is the least bit suspicious will be deleted.  I err on the side of caution.  That said, there is a wonderful compendium of knowledge and wisdom in the comments, so thank you to all who have shared there over the years, and please feel free to continue commenting as you see fit.  They are one of the great rewards of writing this blog!

People in crisis often want to know where they can get help. Grounding exercises for PTSD can help get us through the short term. Here is a way of finding US and global treatment centers that specialize in PTSD. That is of course assuming you are privileged enough to have access to these resources. Not everyone is. And in case I forget next winter, here are some tips on PTSD and the holidays.  One of the most disturbing symptoms of PTSD is flashbacks, especially when they result in "non-epilectic seizures" or what a doctor might have called "pseudo-seizures," though there is nothing "pseudo" about them.

If you are looking to help a loved one diagnosed with PTSD, you might want to read my open letter to someone looking to help a loved one with PTSD. My partner, who is a key part of my loving and supportive network of friends, has been absolutely critical to my ongoing recovery, and I share some of the ways she has both helped me when I could not help myself and some of the unfortunate costs she has paid as a result of my PTSD.  It is a hard road, but we have come through stronger than ever, so there is hope.

Picking a therapist can be difficult for someone with PTSD, because often times the PTSD itself messes with our pickers. Through necessity and trial and error and generous borrowing of other people's wisdom, I've come up with a brief subjective guide on how to choose a therapist for ptsd. It contains links to some other, less subjective guides too.

Along with getting medical and psychological help, medication helped get me stabilized even though I was really resistant to it because of being a recovering addict. I wasn't resistant to trying Effexor, and kind of wish I had been (see Battle of the Effexor and Joy of Meds: Effexor withdrawal) I have quite a bit to say about PTSD and 12-step programs. While 12-step programs saved my life, I found that their one-size-fits-all model did more harm than good after the initial haze of the drugs and alcohol wore off. There is more than one type of addict (and some more on the subject here). And although it claims not to hew any one denominational line, it is based on Christianity in some ways that were harmful to my recovery. I finally decided to leave 12 step approaches, a difficult decision. In hindsight, however, some of the most exploitative folks I ever met were from the halls of twelve step rooms and the addictions recovery industry. Spiritual and psychological abuse are real and create huge barriers to recovery. Just to be sure, I tried a few alternatives to 12 step approaches that were promising but fizzled out, so I tried again, home group and everything,  The results were the same, but magnified in a way that really drove the point home.  For the past few years, I have found an Al-Anon home group that takes care to welcome everyone and not get caught up in "my way or the highway thinking.  It turns out that my main problem, as long as I don't pick up, is not with substances, but with addicted dysfunctional people, so this Al-Anon has turned into a real home group for me. Might not work for everyone, but it is working for me.

Betrayal bonds form a major part of PTSD as I have experienced it, so I've spent a lot of time writing about them. You might have heard of this as Stockholm syndrome. They take a number of different forms. Fully understanding the nature and effects of betrayal was key to beginning my recovery from PTSD. While the guy who wrote the book on betrayal bonds associates them with sexual addiction, I have found this ain't necessarily so.

 If you are interested, I can tell you more about my PTSD. Some days are still rough (skin-crawling, time-wasting, losing time, etc) but I have found a certain amount of recovery, and my life is once again bearable, even enjoyable on good days. And I'm still here, yes still here, and even now, still here.  Partly it depends on which dogs I feed. It also helps to have a loving and supportive network of friends. Oh, and to stay far away from toxic relationships.

An open letter to someone looking to help a loved one with ptsd

Hi,

Since you did not post anonymously and wanted to get a hold of me I won't publish your comment but will respond to your email.  If you want to repost anonymously, you might get some help that way too, so if it comes through again anonymously I'll publish the comment.  I never had Electro Convulsive Therapy (ECT), and have heard nightmarish stories about it, even in the new and improved version.  If it is not having a helpful effect, please reconsider it!

First off, sorry to hear you and your wife are having such a tough time.  When I went through the worst of the flashbacks and other stuff I was very difficult to deal with and a real burden.  I am fortunate my wife recognized what was going on as similar to what happens to battered women (she had done some work in the domestic violence field) and people who have been abused, but we had no idea when it went down what PTSD or flashbacks were.  It was incredibly frightening...I thought I had just gone crazy.  That is why I publish the blog, so that if people are hunting around they will know that what is happening is not unique and that there are ways through it.  The only way out, unfortunately, is through.

It put me out of work for 1 and 1/2 yrs, and I had to go to inpatient.  We basically maxed out credit cards and borrowed from friends and my wife's family.  Insurance would not cover anything.  I looked into but did not get social security for a disability, we were too busy with the symptoms to be able to go through with that when it actually could have helped.  My family of origin was in such denial they did not help and went on a sort of in-the-family PR campaign to discredit me and my wife.  I don't talk to them at all any more.  That whole things was weird, because the immediate causes of my ptsd were not directly anything to do with family other than raising me so I couldn't recognize psychopaths when I encountered them.  We had ok credit but not much income at the time and basically maxed out the 0% introductory offers and juggled them around for a couple of years before paying them off.  No fun, but it worked.

If you can go that route, do careful research on the place.  I went to Life Healing Center in New Mexico.  Some people, like me, have gotten a lot out of it, others, not so much.  It did not cure me, but it did give me enough tools to manage the worst of the symptoms and set up a structure of recovery, which slowly happened (with lots of work from me) over the next five years.  I have not had a flashback in bout five years, but I know that seems like forever from the other side.  With help though, it can and does get better.  Without help it will not ever get better, and would have resulted in incapacitation, institutionalization, and death for me if left untreated any longer.  It kills lots of people through suicides and addictions, and the stigma prevents the experience from helping others.

About the careful research, look at the comprehensive list of treatment centers.   You might contact Life Healing Center and ask where to go or what you can do.  They were supportive when we called.  The Sidran Institute that is listed at the top of that page serves as a clearinghouse of info and advice on getting help with PTSD.  They have a great help desk.  I would also check "how to choose a therapist" on the blog.  While setting up longer term plans, try to get short term support in place.  If Kaiser will pay for therapy, try to get a referral for PTSD.  There are lots of positively harmful mental health professionals, I would say the majority of them, so if you get a bad vibe with one try another.  It is not you!  Other people I know on Kaiser have managed by trial and error to keep trying the therapist they assign and if that one does not work ask for another.  Make the first session an interview.  You may want to attend with your wife, because if she is now like I was a few years ago, I would pick abusive therapists!  Ultimately though it has to be someone she feels she can work with, so you can only support, not do it for her. But she has a right to get appropriate treatment specific to her case, and might need help to do that.

Kaiser may want to do an economy one-size fits all solution, but you have the right to get the help you guys need.  Especially be careful with psychiatrists prescribing meds.  If you get a sense they are just prescribing this week's pharmaceutical company offering and not listening to you either before during or after you start on meds, clear out fast!  I'd say psychiatrists approach closer to 90% incompetent.  I really had to hunt to get a good one that would actually listen.  My wife helped me find a good one, and the "how to pick a shrink" page is what we learned about how to find one and interview her or him.  Meds are an important part of my recovery today though.  But if one gets overmedicated, it is just zombifying, and if your wife gets on the wrong meds and the psychiatrist does not listen, it is horrible.

Also, check the laws in your state.  In my state, major depression, which I had from the PTSD, qualified for more intensive treatment and the insurance company had to pay for unlimited sessions, not just the usual 24/yr or whatever.  The insurance company of course will not tell you this, so check the laws and the fine print of your policy on it.  I went twice a week sometimes when things were just starting to get better.

If there is addictive behavior involved, tread very carefully around 12 step programs.  They have little to no understanding of trauma issues and even if it works for the addiction, like it did for me (I went to 12-step groups for 16 years), the cure can be worse than the ailment, and charlatans and @$$holes abound.  That is not to say don't use it as a resource if it works for halting the addictions, because the addiction, particularly to drugs or alcohol, will prevent any progress in recovering from the ptsd.  Just don't drink the kool-aid that says it is a cure-all and if you are not happy joyous and free in 6 months you are doing it wrong.  That is positively harmful and very prevalent.  Get help with the PTSD elsewhere.

With that said, a number of treatment centers are incorporating trauma work into their inpatient programs.  The meadows in Arizona and the Caron Foundation rehabs in PA are two examples.  Places that work with trauma primarily often won't take a person with substance abuse issues until they have come through a rehab for that.  When I went to Life Healing Center I was already 16 years sober and had to do a bit of convincing to get in without having to go through another drug and alcohol rehab!  Without the sobriety, the other work is impossible.

I am forever grateful that my wife and my friends I had made outside of 12 step groups came through and stuck with me.  I did get better over time and returned to being a more-or-less fully functioning adult again.  It was (and still is) a long slow process, but things do get better.  My wife was for me when I was not, when I was hopeless, she supplied the hope, and we came out the other side of it fine after some couples counseling.  Don't underestimate the strain on yourself and inequitability of what is happening.  It is not fair that you should be stuck cleaning up trauma that you had nothing to do with, and Christian strategies of turning the other cheek and repressing anger will backfire, coming out sideways and destructive.  It is a tremendous strain to live with someone going through PTSD, to the point they have a name for it, secondary PTSD.  So please, if you are going to support your wife, remember that you need to take care of yourself ultimately too.  That can get lost in the cycle of crisis, but it is crucial if you are to be supportive and if the relationship is going to come through in the long run.  It can and does happen, even if it seems hopeless now.  Having come out the other side, it was an awful expereince, but once we sorted things out, with a lot of emotional work from both of us and short term guidance from a good couples therapist when we got stuck, we are stronger in the relationship than ever, and I owe my recovery in large part to my wife's unstinting support.    I'm not advocating martyrdom though, please be clear.  I had to work hard at my recovery and do a lot of work in restoring the relationship.  If I had not done that work, even when I saw no point in it, nothing would have gotten better between us.

I hope this is of some help.  I know PTSD is terrifying and awful, so please hang in there.  All the struggles and hardships paid off for us in the long run and I hope they do for you too.  I'll probably post this as an open letter on the blog without hooking it up to your comment.  Thank you for writing.

grounding exercises for ptsd symptoms

Today I'll go over a grounding exercise I learned that was very helpful in managing ptsd symptoms. Its not a cure. At best, it makes the unbearable manageable. Sometimes when things were really bad it did not work well at all, but I did it anyway. The goal is to bring the ptsd sufferer back to the present by way of the senses, out of a flashback or intrusive memory. Anytime the symptoms of ptsd come on, whatever they are for you, is a good time to practice this exercise.

First look around and see five things present where you are, naming them -- out loud if possible (the naming out loud is supposed to help, but sometimes I would cheat and do it under my breath, too). Anyway, name specific things, in detail, as you see them. For example, I see a picture of my old dog with a wet nose; I see a black computer speaker; and so on. Then name five things you can hear, like the humming of a fan, cars passing by, the dishwasher running, and so forth. Then name five things you can feel. I had a hard time with this first, because I thought it refered to emotions, feelings, but that's not what I was supposed to be after. Its the sense of touch, so I feel jeans against the skin of my left thigh; I feel the soles of my feet on the floor, and so on. If you get stumped, its ok to repeat things, just concentrate on actually sensing them in the present. Then repeat the whole process for sight, hearing and touch four times, then three, then two, then one. You get extra bonus points if you become so wrapped up in your senses that you lose count. Generally, this would bring me back a little. I would still be miserable most of the time and in pain, but the memory part would subside and sometimes the worst symptoms of a flashback would recede.

[n.b.: updated 12/8/08 to replace broken links with new ones]
This isn't the only way to do it, just a very simple and easy to learn one that worked for me if you need it. About.com has some simple suggestions. The Mental Health Matters web site breaks it into three options: accept it and go through with it, learn to control it, or escape it. It is not always a matter of choice though. Their methods of coping are the same for whichever option you choose (or which chooese you!), including one that I tried during the worst of the flashbacks at the behest of counselors in the PTSD treatment center I was in. They had me hold two liter bottles of frozen water (ummm, I think they call it ice :), one in each hand to bring me back. I melted the ice in both and still didn't come back...they were about to send me off to the hospital, but I managed to get a handle on things after about a four hour flashback. Possibly the worst few hours of my life. Cold, the site explains, activates some reflexes that slow down the heart and exert a calming influence. Finally, you can read a more academic but still enlightening and useful treatment of coping techniques in the book Rebuilding Shattered Lives by James Chu.

ptsd, flashbacks, and "pseudo-seizures"

Just a quick post today. I have lots to write about. Working hard on recovery and finding out some new things from this experience of blogging about my ptsd. I'll share in little bits over the next few days. Plus, I just spent my blogging time commenting on another thought-provoking article on Holly's Fight to Stop the Violence on Internet Porn and Sexual Addictions.

BTW, grounding exercises can help a little with flashbacks, so if what I describe below is familiar try them out. They don't make the flashbacks tolerable or make them go away, but they helped bring me back to the present a little sooner when I could do them.

I just want to talk about what are called "pseudo-seizures." They are a particularly nasty kind of ptsd flashback. When I first came upon the name in therapy, I was relieved that there was even a name for what I was undergoing, namely half-hour to hours long episodes in which I would become a tautly curled up shaking sobbing mass of pain, followed by major disorientation...I often would not know what day it was or if and how long ago the thing had happened. I had hundreds of these over the space of a few months, utterly terrifying and exhausting, doubly so when I didn't know what they were. I just thought I was going crazy. So unlke ReallyNotImportant, who dismisses the labels as not very helpful, I found having a name for what I was experiencing comforting to some degree. At least I was not alone. This was within the range of human experience, even sane experience.

If you are having these things, which doctors are now starting to call "non-epileptic siezures" because sufferers have understandably negative and invalidated responses to the "pseudo" part of the label, I truly feel for you and hope you will get help however you can to get through it. There is another side, as far away and impossible as that may seem. I didn't think so either but there is, so plz hang in and get help. There is nothing pseudo about the experience at all. It is horrible.

I tried to think what I might have called them if I didn't know what they were...When I was able to contain them to when no one was around, I invalidated them as just me being dramatic -- though never with an audience. I just tried to minimize, hide, and wish them away. Ultimately, they outed me and that is when I got help from my wonderful family of choice. I thought they would think I was crazy and just discard me like my abusers had when they were done with me.

I guess "crazy" or "insane" were my descriptors once the cat was out of the bag. And they would have been correct I suppose if I hadn't been so fortunate as to be able to get help and support. I looked and felt battered and emptied out of all humanity, only able to feel pain and not able to get rid of it for a moment. No relief.

I still get shadows of them today. Sometimes I shake badly. Sometimes like today I feel like I am hitting the top of an elevator all day, an unsteadiness in the pit of my stomach. It serves as a reminder of worse times, but it is nowhere near the intensity of before...I have been "pseudo-seizure" free for a couple of years now. They slowly worked their way out of me. So if you have 'em, please don't let them get that last little bit of you that you hang on by, even if you have to fight tooth and nail and act all unseemly and cry alot. I needed medication as part of my solution...Geodon was the key one for me, though I know others who hate it.

So if you are having these sorts of intense, seizure-like flashbacks, or have had them in the past, leave a comment and let me know I am not the only one in the blogosphere to have had them!

ptsd and me

OK, the description by the title says a lot about what I want to do here, but let me tell you a little about me. I'm a white guy (but a bit of a race traitor), mid-40s, good job that I'll never get rich from but pays the bills and is fun. I'm happily married, live in a beautiful place, and life is pretty good -- when I can be present for it.

I also have severe, chronic, complex, delayed onset ptsd. It makes my life challenging, but now that I know what it is, I at least have a handle on what was and is happening to me. PTSD is of course, post-traumatic stress disorder. Let me go through the other parts.

Severe? The last major run-in with it put me out of work for over a year. I had about 120 flashbacks over the course of about seven weeks, what get called pseudo-seizures -- they look like regular seizures but I remained somewhat conscious and aware of my surroundings, though sometimes delusional about that. When I came out of them I wouldn't know what day it was or be able to remember how long ago they happened. Maybe I'll go into more detail about them sometime, but they totally freaked us (my wife and me) out. We had no idea what these were or what to do about them at first.

There was more: intense crying jags, incredible bodily pain (I had an operation for hemorrhoids, which is supposed to be about the most painful recovery you can imagine, and ptsd was worse -- though I wouldn't want to repeat either), and something called intrusive thinking...memories of traumatic events triggered by anything, everything, and nothing; lost forty pounds, couldn't sleep, sex life totally fucked up (part of my trauma is sexual abuse, something I'm still trying to deal with), couldn't focus enough to read, self harm (ripping chunks of flesh out for example), and there was probably more I cannot remember. Ummm, no fun.

We (actually, mostly my partner) did a lot of research when the flashbacks started and I ended up in a treatment center for ptsd (Here's another good one, and a comprehensive list for the US). It didn't cure me, but it gave me some tools to help manage things. Slowly, with lots of medication (which I struggled against), therapy, and lifestyle changes, some of the harsher symptoms have gotten better over the past few years.

Chronic? I have come to realize that I have had some version of ptsd for most of my life, but it has been treated and mistreated and outright abused under a bunch of different names.

Complex? Well, let's see...It starts with childhood sexual abuse (which I still struggle with identifying because as a kid I normalized it and my family of origin is in complete denial -- so much so that I am no longer in touch with them -- too crazy-making), neglect, emotional and verbal abuse, depression, and substance abuse. I left home at a young age and added physical abuse and more sexual abuse onto that from street life. I developed a nasty drug and alcohol addiction, something pretty common for ptsd sufferers (I've been clean now for more than twenty years, but other addictive behaviors have haunted me) and became occasionally homeless. The depression continued, I was suicidal. Substance addictions, sexual acting out (nothing violent, but stuff that I'm ashamed of) combined with intense isolation and loneliness contributed to having a really miserable existence.

After getting clean in 12 step programs, my attraction to sick, twisted people (also part of my ptsd) caused more trauma, some of it worse than the substance abuse addiction. Cult abuse, some serious, life changing betrayals by people I trusted and opened up to, suicide attempts, two three-week stays in the loony bin: I wasn't getting the "happy, joyous, and free" promised by 12 step programs. For their part, 12-steppers (and I guess my own internalized twelve step training) often blamed me when things didn't work, saying I was just not doing things right somehow rather than seeing something was wrong that the program couldn't -- and wasn't designed to -- fix.

Severe spiritual and therapist abuse compounded the traumas rather than treating them. This has been a major challenge in my recovery from ptsd. Trust is a problem. A lot of times I don't even trust that the world is not going to disappear beneath my feet. On bad days, every step is an adventure, like walking on a rotted out rooftop or thin ice.

So yeah, its complex.

Delayed onset? The flashbacks started nine years after the events that caused them, long after I was supposedly "over it." In hindsight, I was displaying symptoms of ptsd the whole time, but no one recognized them as such. I got diagnosed with depression, obsessive-compulsive disorder, and a few other things and got put on whatever drugs the pharmaceutical companies were plugging that week with awful results.

I thought I was a sex addict and went to those meetings for a while, but they all had sex with other people. My problem was with porn and compulsive masturbation. I used this as a painkiller because nothing else worked and I was not about to give up sobriety -- too scared of people to act out any other way. Sometimes internet porn would eat up whole days every day. It is something I still struggle with and will write about more, but I didn't feel safe or supported in the twelve step rooms for sex addicts. My sponsor there was hitting on me under the guise of male intimacy and spirituality and others were perpetrators of stuff that I had been a victim of and were having a hard time seeing it as a problem. Not a safe place for me.

I'm actually pretty fed up with twelve step programs even though at the time I got sober they no doubt saved my life. Here's what one study (.pdf file) has to say about it:

Messages in substance abuse treatment such as Dont work on the PTSD until youve been clean for a year or Substance abuse is the only problem you need to focus on, while well-intentioned, can be perceived as invalidating of clients trauma history. . . clients and clinicians report that when a client has PTSD, getting clean and sober is a bigger hurdle and such traditional methods may not work as well. For example, the tendency for PTSD memories and feelings to worsen as clients get clean is a common phenomenon. . . . Sadly, clients with the dual diagnosis of PTSD and substance abuse have worse outcomes than those with either disorder alone, and may internalize a sense of failure when they do not succeed in standard treatment programs that work for others. Feeling crazy, lazy, or bad is common-- a sense of demoralization, self-blame, and a feeling of something being terribly wrong with them. . . . initial evidence suggests that working on PTSD and substance abuse in an integrated fashion results in positive outcomes in both of these disorders, as well as related areas. Contrary to older views, treating both PTSD and substance abuse at the same time appears to help clients with their substance abuse recovery, rather than derailing them from attaining abstinence.

I got sober under the "older" model. Against the odds, I didn't pick up. When people at the treatment center heard my story, they were amazed that I stayed sober through it. But drugs and alcohol were a hell I didn't want to go back to.

Anyway, that's a little of my "war story." One last thing for now: I have talked to people who have combat ptsd, and the symptoms don't seem a whole lot different, even if the causes seem different. My ptsd is pretty un-macho, though, so if that offends or you can't deal or you think I just need to get over it, maybe you need to look elsewhere or start your own blog. I have no desire to play the ptsd version of what Elizabeth Martinez calls the "oppression olympics."

I guess the next thing I'll do is post some links. Leave a comment if you read this, let me know someone is there.