How long have you been struggling / diagnosed with PTSD and what help have you gotten?

[rusty_maestro]

The "changing the brain" concept is kind of lost on me- I accept that we are changed by trauma, for sure, but each of us in unique big ways, and as a group in measurable but not entirely reliable or repeatable ways.

I had hepatitis C until I did the regimen and cleared it in 2005. People I told about it thought hepatitis A, B, and C were similar. They told me all about someone they knew that had type A and how they got better, you will too. I explained that comparing hepatitis A to Hepatitis B or C was like comparing head injury rock to head injury baseball bat to head injury face plant. All head injuries, all unique and different for everyone with a head injury.

Same with PTSD. PTSD trauma. PTSD assault. PTSD bad childhood. PTSD combat. All causing measurably similar changes in the brain, but each unique, and each and every sufferer unique within the classifications.

We are all on the bus, just going to different places, sitting in different seats, and we all got on in different circumstances.

I put a lot of faith in neuro-plasticity, They used to think that we had a finite number of brain cells, once one was killed by a shot of tequila, it was gone forever. Now they say that challenging ourselves to think hard by doing things like learning new languages or skills can actually put new cells in play.

drinking while playing musical instruments is hopefully a break even

I like what you bring to the table, well put to. Neuroplasticity surely brings hope. With new science these days and with Teslas brain chip who knows. If a brain chip implant could make everything better for you, would you take the chip? Sci-fi stuff here but we are not far from that.

 

[Friday]

If it does physically change your brain though, it seems we are constantly fighting an uphill battle

It’s the constantly that I’d challenge.

One thing to keep in mind? The vast majority of people here on this site are EITHER brand new to PTSD, just learning how to ride this bitch, and can expect to fully recover within a few months/years; or are on the teeny tiny narrow end of the spectrum who will be experiencing symptoms long term, despite serious work at managing it & their lives. That teeny tiny narrow end? Is -at last read- only something around 4%? 3% 6%? I’ve read different numbers, but they’re all that teeny tiny small. Meaning over 90% of people with PTSD can expect to fully recover/go into complete remission. Those are damn good odds.

Quite frankly, I don’t know if I’m on that narrow end, or not. Personally, it doesn’t matter, because this is the only life I’ve got to live, ya know? My job to make the best of it, whether I wake up tomorrow fine as frog hair, or am eyeballs deep in problems for the rest of forever. I like knowing the odds, but it don’t matter one whole helluva lot... except in the kicking knowledge piece.

I liken PTSD to diabetes an awful lot... because they’re shockingly similar. Both are incurable, but highly manageable. Both are incrediably reactive to outside stimuli (activity & sugar, or stress & trigger). Some people will have mild cases that are at worst annoying even when they’re doing everything “wrong”, whilst others have severe cases losing limbs, sight, life even when working their asses off to manage it. But most people? Whether they can manage their diabetes with diet & exercise alone, or need insulin or even insulin pumps... diabetes wreaks extreme havoc in their lives UNTIL it’s managed, but aside from the occasional flare ups? Quickly sorted... Is a virtual non-issue in their lives. Yes, they have diabetes. Yes, it’s managed. No, it’s not a problem for them. A bit of a learning curve in the beginning, but they’ve got this. Ditto PTSD. Whilst some people have mild/annoying cases, and other extremely severe resistant cases, most people? Deal wih havoc wreaking in the beginning, followed by a swift/steep learning curve, and minus a few occasional flare ups it’s a non issue in their lives. Yes, they have PTSD. Yes, it’s managed. No, it’s not a problem.

People, as a species, are supremely adaptable. Whether you’re talking diabetes & asthma & paralysis, or PTSD & other psych stuff... we adapt. Improvise. Overcome.

Curable is great, but manageable is badass.

 

[rusty_maestro]

It’s the constantly that I’d challenge.

One thing to keep in mind? The vast majority of people here on this site are EITHER brand new to PTSD, just learning how to ride this bitch, and can expect to fully recover within a few months/years; or are on the teeny tiny narrow end of the spectrum who will be experiencing symptoms long term, despite serious work at managing it & their lives. That teeny tiny narrow end? Is -at last read- only something around 4%? 3% 6%? I’ve read different numbers, but they’re all that teeny tiny small. Meaning over 90% of people with PTSD can expect to fully recover/go into complete remission. Those are damn good odds.

Quite frankly, I don’t know if I’m on that narrow end, or not. Personally, it doesn’t matter, because this is the only life I’ve got to live, ya know? My job to make the best of it, whether I wake up tomorrow fine as frog hair, or am eyeballs deep in problems for the rest of forever. I like knowing the odds, but it don’t matter one whole helluva lot... except in the kicking knowledge piece.

I liken PTSD to diabetes an awful lot... because they’re shockingly similar. Both are incurable, but highly manageable. Both are incrediably reactive to outside stimuli (activity & sugar, or stress & trigger). Some people will have mild cases that are at worst annoying even when they’re doing everything “wrong”, whilst others have severe cases losing limbs, sight, life even when working their asses off to manage it. But most people? Whether they can manage their diabetes with diet & exercise alone, or need insulin or even insulin pumps... diabetes wreaks extreme havoc in their lives UNTIL it’s managed, but aside from the occasional flare ups? Quickly sorted... Is a virtual non-issue in their lives. Yes, they have diabetes. Yes, it’s managed. No, it’s not a problem for them. A bit of a learning curve in the beginning, but they’ve got this. Ditto PTSD. Whilst some people have mild/annoying cases, and other extremely severe resistant cases, most people? Deal wih havoc wreaking in the beginning, followed by a swift/steep learning curve, and minus a few occasional flare ups it’s a non issue in their lives. Yes, they have PTSD. Yes, it’s managed. No, it’s not a problem.

People, as a species, are supremely adaptable. Whether you’re talking diabetes & asthma & paralysis, or PTSD & other psych stuff... we adapt. Improvise. Overcome.

Curable is great, but manageable is badass.

@Friday Challenge accepted. I will give that to you, I cannot say I'm 100% of the time struggling. So I would have to withdraw the word constantly and put often or even sporadically or temporarily. There are moments when I feel I'm over with this shit and having a good day but then I get surprised at the least expected moment with some anxiety I never had before. I'm still new at it and learning to ride this bitch like you said. After being surprised a few times it does put me on guard and waiting for the next episode but that is something I can learn to let go and deal with it when it happens. I have learnt to pace myself as well, I'm careful how much I do each day cause if I do too much I get tired (more quickly then before) and then I get easily triggered in those moments. I guess it feels constant because I feel I have to be self aware, keep checking in with my self all the time, which is not a necessarily a bad thing but surely more then I had to do before. Thanks for your input Friday, good reflection.

 

[lil_fighter]

Diagnosed 7 years ago.
When first diagnosed, had CBT for a few weeks and was on SSRI medication for 4 years.
Have had long term therapy for the past three years and doing much much better. Have been in a long term relationship for 4 years and life has been so much more settled. I do still dissociate but it is much less frequent. I feel much calmer and focused these days. I have noticed that because I am feeling more settled in myself, I make better choices and life seems so much less chaotic. My choice of friends is also much healthier. I do find my relationship has challenged me to be assertive and ensure I have strong boundaries and my partner does understand and is supportive. My home is my sanctuary and I have recently had to move out due to the landlady putting rent up, also living separately from my partner now so a few changes and I have been struggling but when I have a stable home again I know that is the key. So it has been a journey that has improved a lot over time but I have to be kind to myself and allow myself those days when I wrap myself in a duvet and just heal. Therapy helps me to be grounded each week and routine has definitely helped me. I accept that PTSD is part of my life and I will fully process the trauma when I am ready to. Have not yet processed it fully in therapy but I guess when I do, maybe life will be even easier - maybe, maybe not, who knows.

 

[RussellSue]

I was diagnosed 2 yrs ago, work related, received 3 months treatment of an experimental treatment based on exposure therapy. Helped a bit decrease the intensity of symptoms but surely didn't get rid of it. Can you ever get rid of it? Sounds from what I have been reading that at best people cope/manage their symptoms or get a reprieve for a period of time but sooner or later it catches you when you least expect it.

It's funny how different people see things differently. I constantly feel like people are recovering around me.

A couple of years ago, I was finally told that I officially did not appear to have PTSD (though I still have a solid history of complex trauma and serious generalized anxiety). This sentiment was repeated last year and this year by different doctors and may continue. How long did I have it? My estimation is that I had it for at least 31 years BUT my formative years were very destructive and my teens were spent not permanently housed, etc. meaning that I did not have a lot of protective factors and I also had trauma come at me from multiple angles over multiple decades. My guess is that I am not out of the woods, yet, and that the real test is going to be how I react to the next major trauma that comes along.

My perception has been and I think the research reflects that when PTSD starts in adulthood in people who have healthy relationships and coping, it doesn't have to last for decades and can even be relatively short-term. I seem to have seen a lot of people recover in my many years in and out of group therapy.

I am doing EMDR now and I wish I'd have done it 20 years ago. It seems to really be helpful.
I also did DBT and CBT, talk therapy for 15+ years and dual diagnosis groups.

 

[rusty_maestro]

It's funny how different people see things differently. I constantly feel like people are recovering around me.

A couple of years ago, I was finally told that I officially did not appear to have PTSD (though I still have a solid history of complex trauma and serious generalized anxiety). This sentiment was repeated last year and this year by different doctors and may continue. How long did I have it? My estimation is that I had it for at least 31 years BUT my formative years were very destructive and my teens were spent not permanently housed, etc. meaning that I did not have a lot of protective factors and I also had trauma come at me from multiple angles over multiple decades. My guess is that I am not out of the woods, yet, and that the real test is going to be how I react to the next major trauma that comes along.

My perception has been and I think the research reflects that when PTSD starts in adulthood in people who have healthy relationships and coping, it doesn't have to last for decades and can even be relatively short-term. I seem to have seen a lot of people recover in my many years in and out of group therapy.

I am doing EMDR now and I wish I'd have done it 20 years ago. It seems to really be helpful.
I also did DBT and CBT, talk therapy for 15+ years and dual diagnosis groups.

Thanks for sharing, that's hopeful.

I have to read more research but so far what I have found is that your brain physically change. Thus should be considered a brain injury. Does that ever recover physically I didn't read that yet. Neuroplasticity would say we can create new neuro pathways. Some research seem promising to with mdma and other psychedelics. When people have no symptoms is it just dormant or cured? I have not read the word cured either. Time will tell I guess.

 

[RussellSue]

I have to read more research but so far what I have found is that your brain physically change.

When I was in high school my IQ was 130. When I was 26, I went to a neurologist because I didn't know where my own plates were supposed to go and had an IQ test and my IQ was recorded as 81. My brain had changed a hellova lot and I was on the verge of being put in a home as a result.

But, I got lucky and when I was a couple of years older, I got a babysitter. He gave me a schedule and set of chores and basically watched me like a hawk for 3 years. I did what he said and I started college when I was 29 even though I was barely functional. I kicked and clawed, tried to keep my stress down and took niacin (nicotinic acid) by the handful (once an experimental treatment for schizophrenia) and ultimately finished graduate school when I was 37 with an overall GPA of 3.9 (4.0 in my English program) which I am pretty sure I did not do with an IQ of 81.

That is what I know about neural plasticity. I do not have the same brain I had when I was 26 -- no more serious depression, no more insomnia, no more flashbacks, I can read, I can think, I can even concentrate most of the time. But I changed everything I was doing, forced myself into a routine, studied for school and studied about neuroscience, exercised, ate well, etc. while in therapy. From age 30-35, I worked my ass off just trying to get my brain back.

When I was first told that I did not have PTSD, it was made very clear that I did not have it right then -- like it might come back. The last time, that was not mentioned. I think it can come back, especially if something severely traumatic happens but part of why I am doing EMDR right now is basically as insurance. If I can process through all that trauma, maybe the next one won't attach to everything else and try to kill me. I don't know. It's worth a try.

 

[Deanna]

Sheesh.. Everyone is so different but I have had cptsd since I was about three years old and was diagnosed at 53? Or, four years ago now. Close to 5, really. I've cut down on my meds some because my doses were making me paranoid.(SSRI's)No one even knows I'm PTSD except some close friends. The depression is what kicks my butt. I still work and that keeps me active but I can honestly say that physical exercise is what really helps me. I do take one anti-psychotic medication and counceling is a joke for me although I do it. I'm not that volnuerable in real life but I do what I'm told by my psyche doc. There really is no change for me since I was diagnosed. Prescription for me and PTSD for management. Life is decsent.

 

[Still Standing]

I have chronic PTSD. I sought therapy about 3 1/2 yrs ago at age 67. I have had this since childhood and added onto by medical traumas. Didn’t know what was “wrong” with me had a name until then. I’ve tried CBT, ARC, EMDR, and about to embark on DBT. But, at the moment I am doing some talk therapy, too.

 

[rusty_maestro]

If I’d actually known anything , or even better, actually understood PTSD the first go-round? I very much doubt I’d be here, today.

What would you have done different?

 

[Skywatcher]

I have cptsd, but wasn’t diagnosed until my mid forties. I’m on my fourth year of therapy and am finally in a spot where I trust her and can work on stuff without going into a bad spiral. We mainly do emdr, but she brings in other types of therapy as well. It’s nice that I can recognize how much I have improved.

 

[woodsy1]

Hello @rusty_maestro,

I was diagnosed with MDD and GAD in 2014, right when I came out of an abusive faith group. I think my VA providers saw this as a recurrence of the MDD and GAD I experienced back in 2003 instead of a new diagnosis.

This was likely my own fault to a large degree. I wasn't talking about my trauma yet. Heck I didn't even realize yet that I had been through abuse. I also didn't fully recognize I was in an abusive marriage yet.

I was just trying to survive.

About a year later, a coworker in a mental health agency at the time suggested I apply for VA Disability. She had and said I really deserved it. So I applied.

I figured I would get a 10%-30% Disability rating from the VA. Well, I got diagnosed with PTSD, MDD, GAD, and Social Anxiety. And I got 50% Disability!

I kept working but was struggling like crazy. I missed many days at work. The VA was throwing at me every medication in the book. Nothing was helping. Most made my situation worse.

I was missing a lot of work. I still wasn't dealing with my traumas. I was just medicating symptoms and trying to survive. It wasn't working.

I was going to urgent care fairly regularly for "heart attacks." It was actually anxiety attacks. I was having trouble interacting with people at all.

In 2017 my wife at the time and I bought a used home. It only cost a little more than renting and the money was going toward our future instead of a landlord's. Seemed like a good idea at the time.

It was all a blur to me. I'm not even sure how we found and purchased a home. But we did.

Shortly thereafter I just collapsed. I couldn't do it any more. I was done.

I stopped going to work and applied for their short term disability. They fought me on that for 6 months. A trauma focused mental health agency fought against giving me guaranteed short term disability! I couldn't believe it.

I still wasn't working on my trauma. But I was slowly recognizing it was just that, trauma. At different points along the way, I tried seeing counselors/therapists. It never worked and I had time finding a good fit. I finally found a good fit and then just couldn't do therapy anymore.

I became isolated in my house. I curled up on the couch and played Poker Heat on my phone to distract my mind from the constant onslaught of intrusive thoughts. I spent the better part of 2 years like that.

After enduring 2 years on my couch, I finally decided that I wasn't going to spend the rest of my life like that. I started drinking with my wife. We'd go out and socialize.

My wife cheated on me with a guy that was doing drugs and running around with various women. That brought our 12 year marriage to an end. I don't know what has become of her.

I continued drinking for a total of less than a year. It masked my symptoms and gave me a false sense of "normalcy." The normalcy was false, but it was better than isolated torment on the couch.

My divorce was final in February of 2020. I stopped drinking in August 2020. My thoughts began to clear up.

I just started seeing a therapist about a month ago. I am finally facing my trauma and discovering who I am now as a sober person with extreme Complex PTSD.

Im not in a position to say what it looks like when people learn to cope with their symptoms or overcome PTSD. I'm really only beginning to know what it's like to function at all. I do know that where I am now is somewhat better than where I was a year or two ago.

Woodsy1