Misdiagnosed for 12 years...

[AdecadeLost]

Hi to all - 12 years ago I experienced a traumatic (for me) event that sent me into a deep depression. I had a history of depression, but this was unlike any before. Suddenly I could not be on time, think straight, multitask - and the panic attacks! Unbelievable. I was raising a 12 yr old daughter alone. Every antidepressant combo did nada, and I was diagnosed with treatment resistant major depressive disorder. I insisted that I had PTSD. Nobody listened. So I live in hell for over a decade until two weeks ago I do google research and come across complex ptsd. They describe the behavior and symptoms - IT WAS ME. So I am switching all my doctors to ones that are trained in this and prepare to start over. I was 42 then - I am 54 now. What a waste of time and money and health. I am happy to have found this forum. I hope to learn and grow with you

[Hidden]

Hello and Welcome! Thank goodness you have found support here and you now have a true understanding of what has been happening. I am really blessed with a good GP Dr. who understands PTSD and I have a very experienced trauma therapist. When it comes to the therapist be very pro active when trying to find the right one. I wish you the best of luck.

[AdecadeLost in reply to Hidden]

Thank you so much. I am doing my best to find someone who has done work with c-ptsd and is trained in DBT. Other than that and a good "fit", is there anything else I should be looking for? I just found one of the top psychopharmacologists in NY to work on my meds if necessary so I believe I am ok there. Any thoughts or suggestions are greatly appreciated Capejoy

[Hidden in reply to AdecadeLost]

My issue was finding the right therapist for my trauma. I tried a few different ones and after a few sessions I left because I could tell it wasn't going anywhere or they were not a match. I also have c-ptsd and for me I need someone who I can develop trust with, I like someone strong, direct, and honest, I also like natural healing and spirit type work, and of course they have to have experience treating traumas. I even ask how many years they have been doing that. There are a lot of different ways to heal so if you can figure out what you may be interested in as far as modalities and start looking from there that should be a great start. Best of luck!

[luvdance in reply to AdecadeLost]

i am wondering who the pharmacologist is if u don't mind sharing the name? and also does this person take ANY insurance. also I'm wondering if you have found any particular meds helpful for the PTSd (CPTSD - I've also been dx with developmental trauma disorder among other things) - i haven't found anyone who can help me med wise and I'm also fearful of the side effects of most antidepressants - don't want to trade one problem for another - put on webutrin bc none of the side effects but it also seemed to stop working after one week of euphoria. any suggestions would be appreciated

[AdecadeLost in reply to luvdance]

Lets talk on a private message about this ok?

[jackie-wright in reply to AdecadeLost]

I don't know if your familiar with Peter Walker, but he has a lot of good info on complex PTSD , in fact he is the first person I ever heard mention or talk about it before He also has a very down to earth way of explaining it so you can understand it.

[AdecadeLost]

Thanks!

[Palomineo Pioneer]

Hi

I think most of us here have been misdiagnosed for years, till we search it out or find a person who has experienced it...

There is help here and everyone has been willing to offer the things that helped them.

Check the toolbox for PTSD for some good suggestions!

[AdecadeLost in reply to Palomineo]

Thanks Palomineo! But where is the toolbox located? Probably a dumb question but I this is my second night in a row not sleeping so I am kinda dim. I either sleep through days or not at all...

[Palomineo Pioneer in reply to AdecadeLost]

Ok I tried posting the link. It disappeared...

There is a search box on the top of the page... Type in tool box and you'll fined it!

T

[Palomineo Pioneer in reply to Palomineo]

I use a couple of techniques and I combine them

Meditation plus breathing and I build things I like in my head... Concentrate on it and it Crowds out the bad stuff! I build things like an electric trike, or a house... Even a tree house... then use the breathing exercise ... I can sometimes get to sleep that way!

[AdecadeLost in reply to Palomineo]

Thank you Palomineo - those are really good suggestions. I will try to do them today!

[Hidden]

I am so Happy you are on the right track!! Good for you. Sad but health care whether mental or physical is hard to get the right diagnosis. I think mental more. Everyone responds to traumatic situations differently. Some common ground for sure but some are not as effected as others.I am very sensitive therefore, I am open more to PTSD. When they all add up I am a mess. Very hard to untangle from all the emotions. Where to start and so on.. I hope you find a Great Doctor and find some peace of mind and heart soon

[AdecadeLost in reply to Hidden]

Thanks and I know how you feel as well. At first I was so angry and confused at the wasted years. Now I see I am not alone on this journey. Time to stop the pity party and get working on DBT and I hope you and I find peace soon.

[MicheleR Founder]

Welcome, AdecadeLost! Palomineo is so right when he says most of us have similar stories. PTSD mirrors other issues and is often misdiagnosed. I'm so glad you did your own research and have become your own advocate -- that's really what gets us on the right track to healing. I went undiagnosed for 24 years, so I know what you mean about feeling you've wasted time and money.

Regardless, it is possible to heal. You're in the right place to connect with others who are serious about figuring out what to do, how, when and with the help of whom.

On my radio show I've interviewed experts about complex-PTSD and recovery. Their ideas might be useful to you:

What Is Complex-PTSD and Can It Be Healed?

changeyouchoose.com/what-is...

Complex PTSD: Reclaiming Identity After Trauma

changeyouchoose.com/complex...

Here's to your progress and finding your unique path to healing!

[AdecadeLost in reply to MicheleR]

Thank you Michele. For this site and your wisdom and words. I will most definitely listen to those shows. I am just beginning to put my childhood life into why I am this way, which isn't pretty. And it hurts - but I know I must get through the hurt to come out the other side. Thanks for all you do.

Best,

A decadeLost

[AdecadeLost in reply to MicheleR]

Thanks so much Michele! I have been reading much of your writings and they have really been inspirational. Are you going to be doing any workshops or speaking engagements in South Florida the first 2 weeks of January? I am going to be in the Boca Raton/Delray Beach area visiting my parents. Just thought I would ask...

Happy Holidays!!

[aujoymyjoy]

Hey, you are not alone. I have been working through my stuff with NO therapists for 10 years, found help in a Celebrate Recovery 12 step women's group, met a friend who helped and finally found this website. I have found myself, some friends and my son to be my main source of help. No money/ insurance changes the options. Good for you, you found this forum! And check out Michele's webpages: boatload of help!

look up healmyptsd.com and changeyouchoose.com

hey, I am 57 and am glad I finally am not alone in my struggle. What you described as happening at work was my life for 10 years until had to quit working. Couldn't do it anymore.

[AdecadeLost in reply to aujoymyjoy]

Gotcha! I actually found this support forum after I found Michele's websites. And when I was at my worst symptomatically with no relief from a bone crushing depression too - my own family fired me from the business I helped to build. I haven't worked steadily since. So I understand that feeling you probably have inside. Mine is embarrassment, shame anger. I am an imposter.

[aujoymyjoy in reply to AdecadeLost]

Wow. That is horrible! To be cut off from something that was your world, an essence of who you are, your life's work is debilitating, from my point of view. Geez, it is more than being fired from a job.

OK, I don't want to tell you how you are feeling and I am not an expert. If that happened to me, the firing would mean, we don't want you anymore, we don't need you anymore, what you offered is worthless, go away. Is it touching more than just a job in you? Does it touch your value as a person? Was your work a part of your identity? And you lost it after being fired?

[AdecadeLost in reply to aujoymyjoy]

I was well the best word was ...traumatized. Looking back I realize my behavior was not consistent then. But it was done in a heartless way and that added to my extreme pain. I am also the oldest of the kids. I was a VP at a pr agency, running events all over the country. And now I can't get to work ontime? So shame was in there too at first. Anger came later.

[aujoymyjoy]

Hey, next time you post something, chose the 'community' button at the end. Otherwise your post is open to all kinds of people and the response may not be kind and understanding. Just a heads up.

[AdecadeLost in reply to aujoymyjoy]

Ugh, thanks that's all I need, right?? I will be careful from now on

[trekster22]

18 years after fighting for a CPTSD diagnosis one could be on the cards so I empathise with your situation.

[AdecadeLost in reply to trekster22]

Thanks Trekster, glad to know others understand!

[alamagoosa Pioneer]

Learned about PTSD 1993, after 20 years of wrong diagnosis of Bi Polar. Learned about C=PTSD 3 years ago. Got the right treatment for it 3 years ago. I was mistreated and wrong medication and wasted decades of my life. I wonder if there is a diagnosis of love deprivation or hug deprivation. It's all about chemical imbalances. The mental health profession has lost it's humanity.

[AbideinLove Pioneer]

I am glad that you discovered the correct diagnosis. That sure helps when it comes to knowing what we need to do to heal and recover. Very sorry it took 12 years to find this out.

I had so much shame over being diagnosed with anything, that it took me three years to accept that yes, I do have PTSD. The childhood and adolescent trauma I went through were deeply repressed until three years ago when my husband passed on of colon cancer and I lost our home and business. in Japan.

All the stress and grief opened the dam and out came out horrible memories of what I had been through. Then the catastrophic earthquake hit Japan and the government wanted all foreigners to leave the country. So I fled, like I had back to my family in the USA where all the initial trauma had occurred.

Oh my! PTSD symptoms kicked in big time. I decided to move across country to a country where I had a close friend and could receive the treatment I desperately needed. It have been in therapy three times a week for three years, but I still feel I have a long way to go. Finding Michele Rosenthal's website really opened a door for me. I feel more hope than I have in a long time.

This forum is our "safe place" to learn, grow, heal and recover from PTSD, with others who have survived trauma too. I am very grateful to have Michele's guidance and this supportive community she is providing for all of us. Thank you Michele! : )

I welcome you and look forward to reading your posts and sharing what we learn.

[AdecadeLost in reply to AbideinLove]

Thank you so much. I think you are one very brave woman - your story gives me hope. Thank you for sharing it with me

[alamagoosa Pioneer]

I looked up Daniel Amen on you tube about PTSD and brain injury. I hit the back of my head on a car windshield at 13 while riding a bike. I broke the windshield and was knocked unconscious. The car left 55 foot skids mark on a dry road.I had amnesia. Everybody just went back to business as usual when I got out of the hospital. That was in 1969. In 2010 I got a QEEG brain scan and it said I have moderately severe brain damage. Yesterday I found out that the back of the brain, the cerebellum, is where the higher functioning area is. Could it be that 40 years of meds and therapy and diagnoses were all wrong from the beginning?

Bi Polar? Depressed? Lazy? Try harder? You have a fascination with your illness? Feeling sorry for your self? Sitting in your own shit? I have heard it all. But now I have information that may actually help me. Thanks. I want to get SPECT scan as soon as possible.

[IChoose]

At 19 was given Haldol. Had major dystonia that sent me to emergency room. Fast forward over 30 years later, had a diagnoses of GAD, schizotypal, delusional disorder. How I have avoided Seroquel this time around I have no idea. Oh, and, of course, I have trauma. Two psychologist Trauma experts within 6 months have said PTSD only with splitting, fragmenting and dissociating. Funny, these wto psychologists are the only people who I get better with.

[trekster22]

Welcome from someone who also had a long delay in getting diagnosed.