I developed conversion disorder (long)

[Soyrizo]

I thought I could share my story, and also get some pointers on stress management in regards to pursuing a nursing career. I am a pre-nursing student, and would be starting the darn program by now if I hadn't developed this recent illness. Taking time off of school and letting go of my time line was not easy!

I also did a search on conversion disorder, PNES/pseudoseizures is a common presentation, and was surprised about the general lack of knowledge and distinction vs malingering, so maybe in the future someone like me will come across it and it could help.

My background is a I am a relatively healthy young woman, married with 3 wonderful children. My psych history is average, mild/moderate depression and anxiety well controlled with anti-depressants. No personality disorders, no constant dramatic issues with family or friends, never been arrested, never used drugs or abused alcohol, I don't visit the ER regularly, etc. I am quite boring, LOL. I do have a fair bit of external stress; 2 of my 3 children have significant special needs, my DH has a chronic illness, and there's never enough money to go around. I think my coping method for the last 6 years has been stuff it down, suck it up, and do what needs to be done.

This spring I had some minor health issues and had surgery. The day after surgery I started stuttering, I assumed it was from the surgery, the pain meds, and just being exhausted. Instead it got worse, and my head and neck started twitching the next day. I saw my doctor, who had no idea but was concerned so he sent me to the ER. At the ER they had no idea either, and said it wasn't serious, it should go away. Fine with me. But instead of getting better, it got worse to the point I couldn't walk or talk. It was extremely odd. If I was laying quietly, I felt fine. If I tried to move, there was no pain or weakness, I simply couldn't get my muscles to receive the message, they either wouldn't move or they would wildly spasm. And all the while I kept having the feeling I *should* be able to control it but somehow wasn't able to. It's hard to explain. Have you ever had a cough, and you convince yourself you can control the coughing but occasionally there's a breakthrough cough that proves you wrong? It was like that feeling.

My DH took me back to the ER, and they promptly admitted me. I spent a fun night being examined by the house residents who had no idea what to make of me, and then was woken up by a group of medical students wanting to see what was going on. I felt like sideshow attraction. I had an MRI, EEG, a whole battery of tests. Finally the neurologist showed up, examined me, and stated with a cheerful grin that nothing was wrong with me, I just have conversion disorder. GREAT, I am not going to die, yay! Wait, what's conversion disorder? I think his response was along the lines, "It's all in your head." Luckily, some doctors with him took up the slack for his poor bedside manner, and explained it better and more thoroughly. Later, my wonderful nurse also took time out of her busy day to talk with me about some educational printouts on conversion disorder and how I was feeling (in fact, all my nurses were wonderful!) The next day I went home after seeing a psychiatrist who confirmed it, and was told I needed to take better care of myself in stress management and go to therapy.

Which I did, I threw myself into weekly therapy and read every self-help book I could get my hands on. And of course, I googled my heart out about it. What I found, between talking to my doctor and my research, is there isn't a lot of information out there for the average person like me but it's pretty common for doctors to see (conversion disorder=hysteria, or hysterical neurosis,) it's just generally not quite as dramatic as my case so it may take some time for a firm diagnosis to be made. All medical issues have to be ruled out first, and even after a diagnosis. I saw 3 neurologists and a couple of other specialists to confirm that nothing neurological or medical was wrong, as a CYA but also to convince my unconscious quite firmly that nothing was wrong.

Here are some links.

Conversion Disorder: eMedicine Emergency Medicine

What's important to note is that you can't both have factitious disorder/malingering and conversion disorder. One of the key diagnostic criteria for CD is that it is involuntary. There may be some psychological gain, like having positive attention from caregivers, but it isn't a conscious manipulation as with malingering. The unconscious brain is telling the body to act out to get it, but the conscious brain is saying, "What is going on? I don't want this!"

Progress in understanding conversion disorder

What is interesting about the above link is the section on neurobiology of CD.

What they're suggesting from imaging studies of patients is that possibly there are areas of the brain that are more sensitive to emotional stress and inhibits or influences those sections to produce symptoms of CD.

I also learned that the vast majority of CD cases resolve once it's been diagnosed and the patient has accepted it. I took this to mean BAM! it's all gone like magic, but in my case it took 6 months for symptoms to stop popping up intermittently. Sometimes I still stutter or twitch, but it's very mild and not noticeable. 75% never have it again, and 25% have it longer but will eventually resolve, but only a smaller number have it for the long term. Up to half of patients have co-morbid mental illnesses and personality disorders. Rate of misdiagnosis is under 10%.

[Soyrizo]

Okay, so now that I got all that out, how do I handle nursing school and being a nurse with CD never, ever happening again? No one has been able to answer me how I can successfully add more things to my plate and still balance it all, KWIM? I only ever get the generic self-care things like sleep, time management, etc.

Plus, I am also really surprised about the lack of education and experience with CD I've experienced with counselors and psychologists. It's been like finding a needle in a haystack to find someone experienced in treating it!

[JustMeLPN]

I am glad I found this, your personal story and information has been very helpful.

I have suffered from "neurological" symptoms for almost 7 years now which over time have caused me to fall and severely injure myself. I recently went to a major research hospital for help and had the best neurologist anyone could ask for. All of my tests came back normal. Alas, the CD assumption. I will begin psychotherapy soon and am just amazed that the things that happened to me in my life that traumatized and hurt me years later could do this to me.

I have lost all of the feeling in one leg, most of the feeling in both hands, stutter, have seizures, bladder and bowel control issues and even vision problems. I am the poster child for CD. As a nurse who had to stop practicing I am anxious to get into therapy and possibly go back to work one day. They believe at this time though it may take years and I may never regain the feeling in my leg and hands. With underlying mental illness's and now physical problems from the falls depression has set in. I am 30, married to a wonderful man have a beautiful daughter and a career I dreamed of but apparently it doesn't make up for rape, molestation, physical and emotional abuse... to name a few things I have experienced as a child.

You are not alone, I am not alone. At first I felt ashamed and embarassed but then to be told I'm not doing this willingly and it's "not in my head" reassured me being a guinea pig for 7 years was worth it. To finally possibly have an answer and a chance at life again, I'm ready and will embrace this and fight it with everything in me. I would love an update on you.

[Soyrizo]

JustMe, I am doing well. I can honestly say that it wasn't the therapy or the self care that helped the most (and don't get me wrong, making sure to get enough sleep and talking about my life with a therapist are invaluable things) but it was simply reinforcing over and over again that my illness is CD and it will resolve eventually made the biggest difference. Every single time anxiety would pop up I would do simple cognitive behavioral techniques and remind myself that I have a disorder where my brain is sending erroneous messages because it can't handle stress the normal way, that I am not faking this for attention and it is real, that the misdiagnosis rate is 4%, etc. Eventually I shortened it to, "This is all in my head, knock it off."

I also practiced guided mindfulness meditation, Jon Kabat Zinn is my favorite, and read Sarno's books over and over again until it stuck. It's been over 6 months and I don't have any symptoms. My doctor told me even after fully accepting the diagnosis it can take a while for it to take. I wish you luck, JustMe.