Post

My Story-including Recovery

I had my first symptoms in the beginning of 2008.  It began when I was at work finishing up my lunch break.  I went to stand up to go back to work and I could not move my legs.  Luckily, I worked with my sister and our boss let her take me to the hospital instead of calling an ambulance.  That was the beginning of grueling and torturous 9 months.  Before leaving the hospital, I gained movement back but my episodes and symptoms grew progressively worse.  Psuedo seizures and psuedo syncope were terms I learned because they became my most common symptoms.  I lost my drivers license and spent a year practically in isolation.  I had to stay home all day, could not work, could not go anywhere.  If I wasn't feeling completely isolated, I felt completely suffocated because at times my symptoms were so bad I couldn't be alone to even use the restroom.  At 20 years old people around me were trying to talk me into getting a walker to give me some independce and to aide me so I could simply go into public without constantly falling down.  I refused a walker but accepted a cane.  My worst episode involved me falling when I was home alone and I fell just so that when I went into another psuedo seizure I was banging my head against a door jamb and wall with my neck kinked.  Somehow, I had my cellphone in my hand and did not drop it so I was able to call my husband to get me help.  I had so many tests done during those 9 months that I spent in and out of hospitals, yet no one could tell me what was wrong with me.  They speculated that maybe I had MS, lupus, and an array of deblitating and chronic diseases and disorders.  Finally, I went to see a psychiatrist for the depression that set in as a result of all these months.  It was then that I was diagnosed with conversion disorder.  I freaked completely when I found out and yet there was a major sense of relief simply from being able to name what was wrong.  However, all the stories I found online where of people being wheel chair bound and having this disorder for a lifetime.  I looked up the clinical information on this disorder and felt more relief.  This could be overcome.  It may take time, but it could be done.  I merely had to figure out the root traumatic experience and go to a psychologist to help me work through the experience.  Many of my symptoms tapered off by simply knowing what was wrongs.  However, I continued to go to therapy.  Eventually, I got to where I am today.  I got my license back, and only occassionally do I feel shaky.  Becuase I have learned to recognize my more minor symptoms that are precursors to the major symptoms, I am able to manage it.  For example, if I feel shaky or weak I simply tell everyone I am out of commision for a day or two and spend the time getting extra rest.  I haven't had a psuedo seizure since the end of October 2008.  It's also been awhile since I have had any problems with speech impairment or mobility impairment.  I still have my canes though I haven't used them for a few months, but I am much better.  I am so thankful for my improvement because right after that big episode, I found out I was pregnant.  I am due the end of July and my baby has been healthy and safe the whole time.  If anyone is dealing with conversion disorder, I urge you to go to therapy to figure out what your traumatic experience was and deal with it.  Most often it's some sexual abuse suffered, usually as a child.  Maybe even try hypnotherapy because sometimes our minds block it from memory as a defense mechanism.  But if you deal with the issue, you will get better.

awakening87 awakening87 22-25, F 14 Responses Jun 28, 2009

Your Response

Cancel

Dear Awakening87,<br />
I've read your story several times over the past few months, and it gives me strength every time. I've been sick for 9 months but I was only diagnosed with Conversion Disorder last June. I promptly found a therapist to help me and I've managed some of my symptoms successfully although I have a ways to go. I essentially took the summer off to find treatment and recover, meaning my summer has been very low stress. I'm afraid that my symptoms will flare up again when I return to College in two weeks. Like anyone in this situation, I'm looking for a point where CD won't be a limiting factor in my daily plans. It brings me immeasurable hope to know that by dealing with CD through therapy I can get back to life as I knew it. It means so much to me to know that you have overcome CD and gone on to a happy life. Therapy has helped a lot, but the online support from your post and others like it are what keep me going on my hardest days.

this gives me hope I have suffered from this disorder for almost 2 year now and it is talking a toll on my my and i

My brother has been diagnosed with acute clinical depression and conversion disorder. He has just been released from a psychiatric hospital today as he tried to take his own life. He has been in and out of hospital for the last 15 years and he feels like a fake and that nobody believes him. Its now good to have a diagnosis but reading all these forums I am really frightened for him. I am so worried that he will try to take his own life again. We had a very troubled childhood and he is now in a considerable amount of debt due to the amounts of time he has taken off work. I am trying to help him through all these matters but he is just so depressed about the whole situation.

wow, i can really relate to your brother! i have also been in and out of the hospital. it's extremely hard to hear so many people call you a faker but to know in your heart that is so NOT the case. i, like your brother, have made attempts on my life.... a lot of the time it was because i felt so alone and betrayed by my own body. so the best thing YOU can do is to ensure him that he's not alone. if he wants to there are many people on here (including me) that would be happy to talk to him. i found it very comforting to talk to people who KNOW what i'm feeling. good luck to you and your brother!

My daughter was diagnosed this past week with CD. It is so frustrating because the medical world does't understand CD. We were treated very rudely at the hospital, and I requested a letter from our Doctor to give to the school so that my daugther would have her absence excused. She was in the hosital for 4 days. The letter was produced but it said that my daughter was experiencing emotional and behavioral problems with bouts of depression. UGH so frustrating. She does not have behavior issues, and is depressed because of school bullying and physical abuse from her boyfriend. She has not had anymore symptons, but was placed on medication for a mood disorder..... now she is drugged! any suggestions would be appreciated.

My daughter has had CD for about 6 weeks. It started with loss of speech, then walking. She began have fainting spells and pseudo-seizures/tremors - whatever you want to call them. Then she began losing hearing and sight. This has all been really scary. She was diagnosed within a week. We took her to the ER at Scottish Rite and they put us on the right track. She is now under the care of Psychiatrist who has worked with CD in children for 15 years. Today is the first day that she has not displayed symptoms. I've read on the internet that CD is completely curable. Yet, I keep reading stories of people who suffer for years. We have not found any evidence of abuse. just a series of things that have upset her. Divorces, deaths in the family, an older brother's rebellion, etc. One therapist we work with has described it as being under a pile of rocks and trying to get out. You have to move one rock at a time.

Star Dust - - I have a very strange Suggestion for you - - and only make it because you are a Psychology Major. There is a book that was recommended to me - - I had posted a question on a group I'm in on reading suggestions and this one one of about 250 different books - another book I'm reading is on economics so a broad range of books was suggested. <br />
<br />
The book is by Julian Jaynes - and it is "The origin of Consciousness in the break-down of the Bicameral Mind" It is a very tough read and I'm only about half way through - - but it is a very different way of think about how the mind is connected and works. As a Psychology Major your might understand the book better than me. <br />
<br />
You said "I am having a hard time believing that everyone started like he did." I don't understand what you meant by that could you tell us a little more. <br />
<br />
You also said "I need answers so that I can be more understanding and helpful. ". What are your questions? - - I will try to answer what I can about my daughters case.

I have a fiance who was just diagnosed with CD, and I was just wondering if anyone know what caused everyone to all of a sudden have CD. We possibly know what cause my fiance's as he was severely abused and traumatized as a child until he was a young teenager. I am reading all these stories, and I am having a hard time believing that everyone started like he did.<br />
<br />
I am a Psychology major, and have decided that I want to know so that I can better help him and others. We have been together for four years and he has had CD for three. He was only diagnosed in January of this year. It is so hard to watch, and I feel so frustrated because I can not help more. My girls love him so much, and my oldest has decided she wants to go into the medical field so that she can help daddy. I sometimes feel very alone, but it is good to know that there is someone to talk to. <br />
<br />
I want to understand, and am in the process of writing a letter to a doctor at Rush Medical in Chicago that had seen us in January. They are conducting a clinical trial as we speak in the Movement Disorder Clinic. The doctor I am writing to is heading it up. I need answers so that I can be more understanding and helpful. I know I will not get them all, but there has to be more than what I am getting.<br />
<br />
Any thoughts?

awakening87 or anyone else? <br />
<br />
what do you feel triggers events for you? Physical things like lack of sleep, poor eating? smells? lack of feeling loved? Stressful events earlier in the day? or our they completely random with no connection to your present life? Flashbacks? <br />
<br />
awakening87 - - so sorry that you had events again - - this is a very fustrating condition. Especially since there doesn't seem to be answers out there - - my dauther seems to have accepted that they will happen and just goes on with her life. She works, and lives as normal a life as possible and makes her condition a small part of her life and not a major pieces. She just doesn't want to discuss her events at all. <br />
<br />
I do like the new name non epileptic attack disorder much better than Psuedo-seizures or even the term conversion disorder - - at least it tells me someone is thinking about this group of people.

Well, something I forgot to add earlier...2 nights ago I relapsed with seizures as well as last night. No other symptoms...just seizures both nights were after I laid down to go to bed. :( Luckily they were not the really bad ones, I could move afterward though I couldn't talk normal for about 20 minutes...

I ended up getting treated by an Air Force Psychiatrist and Psychologist. I would suggest a mental health clinic that has you with a psychiatrist and a psychologist. A team approach made me feel more comfortable and confident in the treatment. Be sure to find one that will listen to her and make her feel like her view is important.

What doctor helped you? Where? My daughter has had this for 5 years - didn't like the first couple of doctors and refuses to get treatment.

I agree with the symptoms keeping in check. I feel them coming on as well and try to distract myself by walking or working around the house. There are times that I loose the battle and have to sleep it off. I still get the muscle twitching ( makes me nervous) and left side numbness in my arm and leg. Therapy is helping me see some of my stressors from past sexual abuse but I have not conquered the CD yet. Let me know if you find any good resources.

Thanks for sharing your story. It was encouraging to read how your dealing and delt with it. <br />
<br />
My doctor just told me about 2 weeks ago that I have conversion disorder too. This is all very new to me. I had my first Psuedo seizure June of 2009. I had know idea what it was nor the doctors. And they kept getting worse and worse and kept reacurring more often. I was away at school at the time. At one point I had to be pushed in a wheel chair. I didn't have much strength to do anything. It was scary in that time not knowing what it was. But, its easier knowing that its not exactly life threatening. It's crazy what the mind and the subconsious can do, isn't it?<br />
<br />
I would like to hear how your doing if you get this. <br />
Take care. :)

I'm so happy for you that you have conquered most of your symptoms. The advice your giving to others is sound.<br />
Hopefully by continuing therapy you will conquer it completely.<br />
Thank you for sharing.