Functional Neurological Symptom Disorder (Conversion Disorder)

I can’t remember when I started to have problems with my memory, pain in my muscles and joints, vision changes and muscle weakness. I’ve had these issues for so long that I just got used to them.

When my hands first started to tremor I didn’t think much of it. It only happened when I buttoned a shirt or counted money. When I began having trouble keeping food on my spoon or fork and spilling whatever I was drinking because my hands were shaking I knew something was going on.

I went to my GP who sent me to a Neurologist. My GP had mentioned Parkinson’s and MS. I admit I was worried. The Neurologist diagnosed me with Essential Tremors. He had found other brain abnormalities that I found scary but he didn’t. Essential Tremors are hereditary and no one in my family has ever had them.

About a year went by when I started to stutter.

A person with Conversion Disorder (CD) or Functional Neurological Symptom Disorder (FND) experiences physical symptoms without an underlying physical cause. Symptoms are usually connected to emotional or psychological stress or trauma. The person has no control over the symptoms and are not deliberately producing them.

The typical signs and symptoms of FND are:

• Deafness or hearing difficulties
• Difficulty concentrating *
• Difficulty swallowing *
• Fatigue *
• Impaired movement *
• Lack of responsiveness *
• Loss of balance *
• Loss of senses
• Numbness *
• Pain in muscles, skin, or joints *
• Paralysis
• Seizures
• Speech problems *
• Tremors *
• Vision Problems *
• Weakness *
• Twitches

Symptoms may come and go or they may persist. They also vary in severity and location. In some people they can last for years and make everyday life difficult. In other people the symptoms are short term.

The exact cause is still not known. Researches used to believe FND happened mostly to low income women with little to no education. This has been proved to be false.

The other false belief is that Cognitive Behavioral Therapy is the way to cure FND but CBT has only a 13% success rate.

When my stuttering got to the point I couldn’t talk my Psychiatrist sent me to a Doctor who specialized in Movement Disorders. He was more than happy to tell me that the reason I was stuttering and my hands had tremors and I was losing my balance was that I had Conversion Disorder.

I knew nothing about it at the time and I was shocked. All I could think was “My brain is doing this?” “If my brain is doing this why can’t I make it stop?”. In fact the harder I tried to control the stuttering the worse it would get. The more frustrated and embarrassed I became the worse everything would get. I didn’t understand that yes it’s my brain but I still have no control over it.

I understand it now but many other people don’t. My family certainly doesn’t. Of course I am one of the lucky ones who most likely will not get better because I have an underlying mental illness, addiction, and traumas.

There’s also another issue. I do have actual physical problems. When my GP or any Doctor checks my reflexes, I don’t have any. They keep boppin’ my knees and nothing happens. I keep telling them they are wasting their time but some are determined. Same thing with my blood pressure. Some nurses will get 3 different machines even when I tell them I have LOW blood pressure. They just won’t accept what they’re seeing. Which kind of worries me but no one else. I’ve stopped asking questions.

Again, I do what I can depending on the day.

WHAT IT’S LIKE TO HAVE CONVERSION DISORDER

Not long after I was diagnosed with Bipolar Disorder, my Psychiatrist noticed my hand tremors. I told him that I had been diagnosed with Essential Tremors. He was skeptical. When the stuttering started he sent me to a Doctor who specializes in Movement Disorders and was also a Neurologist. He put me through a series of tests, each one causing my tremors and stutter to worsen as we went along. He was happy about this. It confirmed his suspicion that I had a “real” case of Conversion Disorder.

When your brain can’t deal with an event or memory it will hide it from you. But it has to manifest somehow. Some people have seizures or paralysis, I had a more difficult type to treat, tremors and stuttering. For some reason when people are told they have Conversion Disorder it usually stops. It will come back under stress now and then. Not with the type I have, it’s always there waiting.

Before anyone asks, yes I’ve had a second and third opinion. They all agreed.

I never know what will set it off. Sometimes it’s a small incident and I can move through it. Sometimes it isn’t.

The first big incident was at my sister’s house a few years ago. Our relationship hasn’t been the same since. We were on her couch talking about our Dad and what to do about him. My brother in law had recently stopped drinking and was attending AA. He was on the couch opposite us. I noticed he was anxious and moving around too much. I didn’t say anything.

In the middle of my conversation with my sister he jumped up from the couch and yelled at me “Have you ever taken responsibility for anything you’ve done in your life?”. I was surprised and angry at the same time. I responded in a normal voice “Gee, Terry have you?”. That’s when he screamed for me to “GET THE FUCK OUT OF HIS HOUSE!”. I stood up because I wasn’t comfortable with him standing over me while he was yelling. When I stood up he repeated for me to “GET THE FUCK OUT NOW!”. Only this time one arm was pulled back and I noticed his hand was in a fist. This caused a serious red flag reaction. I was back in the old days feeling threatened and no one was ever going to hit me again. I exchanged words with him and my sister finally got in the middle of us and told me to just go. I didn’t have my car. She had picked me up. I don’t remember much after that. I know I was walking on the highway in the rain. I don’t know for how long. My sister eventually found me and got me in her car.

She said we sat in her driveway while I was curled up in the seat stuttering, crying, and rocking back and forth. She couldn’t understand what I was saying. My Dad came and they both had to put me in his truck. I don’t remember the ride home. I spent the next 2 days in bed. I didn’t eat or drink. My Dad wanted to take me to the Hospital but I wouldn’t go.

The only thing my brother in law ever said was “I’m sorry. I forgot I have to be careful when I talk to people like you”. My sister never said a word. After that I wasn’t really invited over much anymore. I miss my nephews but I don’t want to scare them. I think that’s what my twin sister is afraid of. It hurts more than anything to know that the people you love the most don’t have your back or are maybe even afraid of you.

I only have my Dad now. The other incident involves my niece and I don’t really want to talk about that. She called me a loser and said some stuff about my mom not loving me as much as I thought she did. There was worse than that but if I open that can of worms I’ll lose another 2 to 3 days over it. She isn’t worth it.

I know my mom loved me. I know my Dad loves me. I know because I’m the only who stayed to help them out. I caused problems but I also gave them all of my love.

TONGUE TIED AND VULNERABLE

My tongue is nailed down, a useless thing.

My jaw is locked and loaded, misfiring every shot.

My lips are sealed tighter than a goddamn drum.

You feel okay saying the hurtful things you say.

Why not? You know I can’t respond. So do your worst.

Expectations set too high I should’ve known better

Not one of you said a thing for me

You just watched as I retreated into myself

The damage done I couldn’t remember pieces of it

Just wailing and the feel of the cold floor for days

Twice you let it happen without stepping in

Twice I lost chunks of my sanity while taking the blame

I still can’t control it And you still don’t understand

What it’s like to be silenced by your own mind

Like a pressure cooker I will only take so much

Before the same happens again

Will you continue to watch as I lose everything

Or will one of you finally be my voice?

CONVERSION DISORDER~ FACT OR FICTION?

Scientist/Researchers now know that Conversion Disorder is a rare Psychological Condition.

It occurs when your brain is unable to handle emotional or physical trauma. The only way your brain is able to cope is by manifesting these emotions into physical symptoms.

A doctor can’t properly diagnose you with Conversion Disorder without doing extensive Neurological and Psychological testing. This also includes a brain scan. Depending on your symptoms an underlying illness has to be ruled out.

I know this all too well. I went through all of it. At first I was told it was possible I had MS. Then I was told it could be Parkinson’s. Essential Tremors were brought up also. I was unsteady at times when I walked. I would lose my balance easily.

I felt extreme pressure to assure my family I wasn’t drinking because I wasn’t looking too believable. I kept asking them to smell my breath. It wasn’t a fun time. Trying to sign my name on a credit card slip or at work was becoming harder and harder. It got to the point where keeping food on a spoon or fork was impossible. Then came the stuttering.

I was not working by then. I felt embarrassed and as usual like the outcast. The one everyone laughed at. And some did. There are people in this world that still think it is ok to make fun of someone who stutters by imitating them. I’m talking about adults. I secluded myself once again, only leaving to go to doctor’s appointments.

I was finally referred to a group of Neurologists and Psychologists that worked with my Psychiatrist. The two Neurologists specialized in Movement Disorders and were published Doctors on the topic of Conversion Disorder. This is why my Psychiatrist wanted me to see them.

As I have written before the visit didn’t go well. I was diagnosed with Conversion Disorder but the Doctor was so excited to have a confirmed case with obvious symptoms he wasn’t thinking of the actual human sitting in front of him.

It’s almost harder to hear that you have something you really don’t want to deal with in your mind. I know the things that I’ve done and that have happened to me. What the hell could be worse? I didn’t know if I wanted that information. I still don’t.

Some people with Conversion Disorder bet better as soon as they hear they are not physically ill. People like me have a harder time because we also have a mental illness (Bipolar Disorder) and Alcohol addiction. This makes it harder to treat. In most cases where there are other issues the person will usually continue to have symptoms.

Symptoms can range from:

• Paralysis
• Seizures
• Stuttering
• Loss of Coordination
• Tremors
• Abnormal Muscle Movement
• Temporary Blindness
• Inability to speak or a lump in the throat

For some reason people that have tremors or seizures not caused by Epilepsy have the hardest time finding relief from Conversion Disorder.

There are only 14 to 20 “true” cases per 100,000 people of Conversion Disorder. To me it doesn’t sound that rare. But I live with it so what do I know?

I Love Doctors Like I Love Colonoscopies

Yesterday I went to see my Psychiatrist for my usual 3 month visit. I had some issues to address with him about my file and the diagnostic codes. As soon as I asked I caused a panic.

I couldn’t get a word in. Finally I got as loud as I could and said ” I just want to know what I am, what I have, what is told to the review board!”. He stopped to look at me and said ” It doesn’t really matter if you are Bipolar I or II it matters how well you function and if I think you can handle the stress of working and you can’t”. I told him it does matter because Bipolar II is still seen as Bipolar Light or Soft by Disability and even other people that have Bipolar Disorder.

His response was that I don’t fit the Bipolar I criteria because I haven’t had a manic episode that involved hospitalization due to full blown mania with hallucinations, voices, etc. I have never read that to be the criteria. Only that you have to have had at least one manic episode lasting more than 48-72 hours.

He also said it was Medicare doing the coding and that he was putting in all the info on me. I find this hard to believe when I downloaded copies of my records and it wasn’t there.

I have some decisions to make. He once again asked me how I was doing on the Brintellex when we stopped it 3 visits ago. It might be time for a change and someone with fresh eyes.

The Ass Maker

I have a habit of telling someone how I really see them or how I feel about them. It makes people uncomfortable to hear the honest, heartfelt, good observations about themselves. I’m not blowing smoke up any asses, I don’t need to. There are people who find this annoying and for that I say too bad.

If a lyricist has written a song that makes me feel something whether it’s sadness, anger, lust, or enlightenment, I want them to know. If later they think I’m a nut job for my observations then it’s a shame. And I then feel shame for voicing my joy and appreciation for an art form I use to speak for me at some of the most important times in my life .

Sometimes when I’m angry and I can’t release that anger because there is a tremor in my vocal chords and a stutter in my brain I put a song on that equals that emotion.

I get cut off on the freeway- Pantera “Walk”

I think about my mom’s death and me- Blue October “Hate Me”

I’m happy sexy- Aerosmith “Chip Away the Stone”

The drinking love song- Aerosmith “What it Takes”

The drunk belt it out songs- Motley Crue “Home Sweet Home” and Aerosmith “You See Me Crying”

I could do a great “Ace of Spades” when I drank too but not now.

Since I was little music was such a huge influence on me. It had nothing to do with fame or fortune. These people got to sing and have other people HEAR WHAT THEY WERE SAYING.

When I spoke no one ever really heard what I was saying. They didn’t hear:

Help me

I don’t want to be here anymore

No one loves me

I let them hit me because it means they must care at least a little bit

I don’t remember last night

I’m sorry I just don’t want to feel

Now they try to hear me but don’t have the patience for the way I think and speak. They walk away.

When I tried to communicate with a person or 2 that I mistakenly thought would understand me I was laughed at, blocked, and saw the report where I was called “annoying”.

This 42 year old woman has been through things in her lifetime that would make most men squeal like a bitch. But I took it all.

I am now sober and where once I would beg to be pretty I now know that I am.

I still have a lot of work to do.

I won’t apologize for telling someone I appreciate what they do. Thank you again Mr. Tyler.

I’m not The Ass Maker anymore I’m Dana like it or not. P.S. I’m the one with reddish hair the other person is my hair dresser who listens to me and let’s me take my time and think before I speak. In exchange she get’s to do what she wants to my hair except cutting it short.

My Psychiatrist is About To Be Tested!

I have an appointment with my Psychiatrist on 11/11/15. Things are going to be different this time. I’m going to make a list of everything I need to ask him and everything he needs to do. I’ll try to get my sister to help me. lol If she answers her phone. If the things on my list are not done or addressed than I will find another Doctor.

The problem I’m having is when I look on the Medicare website where you can download your records, I see what he’s putting in my file and what he’s charging Medicare.

Medicare is over charged by 99% of doctors. There are fewer and fewer doctors taking Medicare in my State because they feel they don’t get compensated enough and it’s a pain in the ass. So the one’s that do pad the bill. I’m not going to say anything about that. If I do it will get around to other doctor’s in the system and they will not take me as a patient.

The fact that he copies and pastes every visit I DO have a problem with. This was what almost cost me my Disability. If I hadn’t had a lawyer to point it out to the judge I would’ve lost. I thought he stopped doing it. He hasn’t.

Every visit says the same thing Bipolar II.

This is wrong. I am Bipolar I, I also have Conversion Disorder, General Anxiety, Social Phobia, and someone added Catatonia which I have no idea what that is even about. None of these appear in my file.

So when I go up for review and the board looks at my file all they will see is the incorrect diagnosis of Bipolar II.

I have to figure out a way to explain this without stuttering and getting upset. I don’t want to offend him. He really isn’t a bad Doctor he just hates paperwork and the record keeping part. He’s told me so himself. But lately he’s been off his game as a Doctor also. Asking how I’m doing on a medication that I discontinued 2 visits ago and is on the screen in front of him. Or it should be. Something is different with him. If I get the same feeling on the 11th than it’s time to go.

The problem is where? We all know a good Psychiatrist is hard to find let alone one that takes your insurance.

I wish my Hematologist could be my Psychiatrist and all my other Doctors rolled into one. He’s the only one I like. The only one to encourage me to advocate for myself and learn about what I’m diagnosed with. He also encourages questions. NONE of my other doctors do that. He’s rare. Maybe he’ll adopt me.

The point is make sure your doctor is putting the correct info in your file and explains things to you. If they don’t like you asking questions then there is something wrong and try to find someone else. Good luck we need it.

Agitated, Irritated, Complicated, Superfragercalalisticexpealidocious and Hair

I’m feeling agitated today. Just some little things. I don’t know if many of you know this about me but I have a child like voice.

When I could eat fast food and would go through the drive thru I had several people working the window say that I could “work in cartoons”.  Some people like my voice and some people don’t.

It has gotten a little deeper with age possibly because I’ve been intubated several times but I’m still a quiet person. It’s hard for me to yell. It has to do with muscles in my diaphragm being too weak. Sometimes a telemarketer would call the house, I would answer and they would ask me if my mommy or daddy were home! I would then tell them “No” they would ask who was home with me. I would say “No one”, at this point I could hear panic on their end so I would tell them how old I was. I thought it was funny, they didn’t.

Some people get the impression that you are weak or innocent in nature when you have a small voice. I hate being seen as weak. My voice isn’t going to get any deeper.

The appointment with The Urologist the other day was an example of where I felt someone was being condescending. Over complimenting my Burgundy Leather Moto Jacket and Boots until it was awkward was irritating to me. It was like he was saying “good for you” or “see you can do it all by yourself”. I wanted to tell him I was doing shots on the tour buses of rock stars when he was in diapers and not to talk down to me. Also I’m incredibly fashionable. Just not when I’m in the Emergency Room for KIDNEY FAILURE!!!

He isn’t the only one. People that I have met in the last few years learn of something in my past and are shocked. SORRY!! I had a life that included alcohol addiction, concerts, dive bars, sometimes meeting known people, and a lot of the time causing trouble. I do not do it now.

No, now I cringe at loud noises (mostly loud men), startle easily, forget where I am, only leave the house about 2 times a week, never meet new people in person, cry often for no reason, get bursts of weird euphoria then crash, want to do things but don’t because I’m tired from doing nothing. This is my hair and outfit for the Urologist. That’s a feather sticking out, my hair stylist colored my hair to match the feather.

Invasion of The Doctor Snatchers

I had the most interesting doctor’s appointment today. My sister came with me as back up because I have trouble remembering things. My appointment was with the Urologist that can be a little overbearing and I always take what he says the wrong way. Even my sister has heard him through the wall being an ass to an elderly man with prostrate cancer.

When he entered the room he apologized profusely for being late and gave me a hug. He said he loved what I had on. He then said hello to my sister and said how great it was to see her again. We went over what the plan was going to be for my kidney problem. He wanted to take out one of my stents in their office surgical suite but wasn’t sure.

I was trying to explain to him my problem with waking up from anesthesia because of the Conversion Disorder. I was stuttering and getting emotional. It’s embarrassing when this happens. I needed him to be aware so his staff would know. At the hospital they are a little more equipped with dealing with these problems.

My sister was getting annoyed and said “He doesn’t need to know all this.” He actually hugged me again and said ” Look I love you and care about your well being so I do need to know. If you think the hospital is better than we will do that.” I thought I would fall off the chair. My sister looked even more annoyed.

I think she looked annoyed because she was diagnosed with a version of Conversion Disorder that was easily taken care of. Mine may never go away. Her’s was due to being fired from her job, having 2 small children, and her husband’s addiction issues. Mine is caused by multiple traumas. I also have a coexisting condition that makes it harder to treat. She will never understand this.

When at one point she tried to “shush” me, I said “Don’t you dare do that to me”. It didn’t come out clearly like that because of my stutter but she got it. So did the doctor. On the way out I got more hugs from him. When my sister and I got outside we both started laughing. We couldn’t believe the “hugging” and the “I love you’s” during my visit. I told her there was something not quite right with the guy. You never know what you’re going to get. But I’ll take today’s visit over the other ones anytime.

My Experience With ECT

My experience with ECT is probably not the usual one. I don’t remember if I had been diagnosed with Conversion Disorder yet or not. As with many other people I was at a point of desperation. I should have waited and planned an Outpatient ECT Program with my Psychiatrist. I wasn’t thinking clearly at the time and admitted myself to the hospital he worked at. They were set to do the ECT until a blip showed up on my EKG. They were worried about not having the emergency equipment on hand if something happened. The doctors agreed I needed it done and transported me to a nearby Hospital that did it. This is where things started to go downhill.

The Psychiatrist in charge did not believe in the use of Klonopin. They also didn’t carry the medication I was on because it was too new. No one knew that when you have Conversion Disorder with Bipolar Disorder that it can make things difficult when you wake up. The staff was unprepared.

Anesthesia and Conversion Disorder can sometimes be a bad combination too. When I woke up I wasn’t expecting to feel like a spike was being driven through my skull with a sledgehammer. My eyes were constantly leaking tears. I had regressed to the age of a 5 year old. I kept asking when my mommy was coming. She was deceased so that wasn’t happening. The staff played along and kept telling me she was on her way. I don’t know if this was helpful or not.

I didn’t know if you were supposed to slowly remember on your own. It took about 6 hours for the memory of my mother’s death to play back in my mind. It wasn’t pleasant. The doctor was not compassionate or sympathetic. They didn’t give me any of my meds or anything for the extreme pain in my head.

My ECT was bilateral. When I finally got home and a few days went by I noticed a huge difference in how I felt. I was happier, I did things on my own and left the house more. This lasted for about 6 to 8 months.

If there was a guarantee that I could have it done in the correct setting with the right doctors I would do it again.

Now my physical health is too bad to have it done, my medications are not working to their full extent. I have gone downhill so much in the last year. Everyday is a challenge. My family is so annoyed and sick of hearing about my illness. I try not to talk about it.

Today was extremely bad and I had no one. My sister finally calls me back. Her answer was for me to “get my shit together”.

It’s overwhelming. From now on I’m not discussing it with anyone in my family.