Conversion Disorder

I talk about Conversion Disorder frequently because it’s part of my daily life. I’ve been disabled from it for years now, though it’s slowly affected me since I was seventeen. There are so many people who understandably know very little about this illness that I find myself explaining it over and over because the more people know, the better. During a hospital stay, I was repeating my symptoms to every nurse and aide with each shift change so they were clear. I know they communicate, but that doesn’t stop a panicked nurse from waving smelling salts under my nose when I’m staring blankly, unresponsive, while inside I’m saying, I smell it! Get it away, please! I beg you! I’m awake!

I don’t blame them. They just don’t know. There needs to be more awareness. One night, I’d been having a rough time of seizures and couldn’t sleep for the extra pain, so I was surfing YouTube and feeling rather alone with my problems. That’s when I found other people’s videos documenting seizures. Often, it’s the best sufferers can do to help others understand because more energy put out to spread awareness brings added stress, which makes our symptoms worse.

I thought I should make a page on my site not only for doing some small part in raising awareness, but also so I have something to link to whenever I mention my disorder. It is much easier than repeating myself.

So what is Conversion Disorder? It can be different for many people, but imagine if your mind is managing stress by keeping this shield up around you. Bad days can chip away at it, some more than others, but it’s rebuilt as you rest.

Well, what if your mind never gets that rest, whether it’s from psychological trauma (even subconscious) that you’re unable to let go of, or something around you at all times? That shield will wear thin until every little stressful thing that hits you, like a loud noise or swift change in emotion, can cause such a shock to your mind that it subconsciously short circuits. It doesn’t know what to do with this overload of anxiety, so it converts it into something physical.

This can resemble the entire body shutting down, though you’re wide awake, or a full body charley horse of twists and spasms. It could be gradual through the day as twitches or vocal noises. Your knees could wobble and drop right out from under you. You could feel like you’re on a ship at sea. You could go temporarily deaf or blind. The list goes on and on! It’s up to your mind and how it chooses to deal with it. And you have no conscious control over this.

These are called seizures and they might or might not show up as seizure activity when tested, but the source is different than with epilepsy, so they can’t be treated as such. Different causes require different treatments, after all. The good thing about these being non-epileptic seizures is that they don’t cause as much damage to the brain and nervous system as epileptic seizures can. The bad thing is that we’re awake during them, feeling every bit of pain and/or the stares of people around us as we cause a scene.

One thing people with Conversion Disorder are not: crazy. While this is considered a mental disorder, we are still completely functional, psychologically. This is a subconscious issue and we can’t help it. Many sufferers may have other psychological problems in addition to this, but simply being diagnosed with Conversion Disorder does not mean you’ve lost any faculties of the mind. You’re still normal in that sense.

See a neurologist about getting a study done with EEG and video (both are important) so they can rule out epilepsy and thus confirm Conversion Disorder, or possibly find out something else that is causing the activity. Remember that many doctors have no idea about this illness and even more don’t understand it properly. Be prepared for this, and be patient.

So now that you, hopefully, have a better understanding about Conversion Disorder, I’m going to get into detail about my personal bouts with it, because it’s a little different for everyone.

In May of 1992, I was in a vehicle accident on a southern Missouri country road. A car sped around a blind curve, cutting it wide so he was in my lane, hitting me head-on. I seemingly walked away with little damage that a few stitches and a few days of healing couldn’t handle, but I had dizzy spells and hallucinations throughout the following months. Doctors labelled me a schizophrenic and doped me up on psychotic meds.

Later that year, my parents moved us to central Florida and I eventually stopped taking the meds – they weren’t helping because I wasn’t crazy. Still, I couldn’t concentrate in school. I took the GED test, passing it easily, so I could be done with that and worry about healing. I tried working here and there but the dizzy spells were intensifying and I couldn’t hold food down. This is really a different, and long, story, so I’ll summarize by saying after three years of going in circles with various doctors, it was finally discovered that my skull was shoved into my brain from the accident; the bipolar region was swollen under the pressure. The rest of my skeleton was out of place in several places, as well. Sometimes, my jaw still pops out while eating and I have to massage it back.

Well, a year after the accident, I was sitting on my couch one day and realized I couldn’t move. I stared at the TV remote and concentrated hard on picking it up. My arm finally reached out for it, but it took several minutes of moving in slow motion. When this spell wore off, I immediately reported it to my parents and they sent me to the doctor. This is when they discovered that my thyroid had stopped working and put me on medication for it. It was assumed that my metabolism had simply bottomed out, and when it occurred once or twice every six months or so from then on, we figured that was what happened.

Then in 2010, shortly before my 35th birthday, they worsened, lasting longer and becoming more frequent. My family doctor was convinced I had cataplexy, where your body shuts down completely but you remain awake. My legs would buckle under me and I’d drop like a rag doll. I could still see, though my eyes relaxed which made everything blurry, and I could hear. People might think I was unconscious but I was quite coherent. My eyes were usually open, staring blank. I could swallow and I retain control of bodily functions (no messes in the pants) yet my limbs, jaw, and neck were completely limp. Sometimes I could talk or mumble, but most of the time I was unable to communicate.

A neurologist did several studies on me and concluded that the cataplectic seizures were non-epileptic, meaning that while they were indeed very real, there was no odd brain activity or damage occurring during them like with normal seizures. It was my subconscious telling my body to do these things against my will. He said that normally, this is caused by deep-seated psychological stress, and while I have my share of that, he said that it was most likely caused by the head trauma sustained at my young age. Amazingly, this sort of thing can just sit there in the brain until it peaks at around 35, then come out full force. And since mine is the result of physical trauma, and because I don’t really have any lingering psychological issues haunting me about it (that I know of), there is no need for me to see a psychologist about it. Or at least, he doesn’t push the matter with me. He knows that while I understand the importance of psychologists (my ex-wife is a disabled paranoid schizophrenic), I’d been misdiagnosed and falsely medicated in the past, and if there was some deep-seated trauma, it was partially thanks to them telling me my very physical problems were “all in my head.”

I was put on disability in 2011, which was fortunate because my Conversion Disorder had only gotten worse. By then, I was also getting dystonia, which is just the opposite of cataplexy. Instead of going completely limp, I get severe muscle spasms throughout my body, either randomly or everywhere at once. They will twist and contort me in various directions over a course of several minutes, and it’s extremely painful throughout. Like the other spells, I’m conscious and plenty sore afterward, as one would with a charley horse. Between the hurt muscles and the buckling legs, I generally got around with a walker, and often my legs simply wouldn’t work for a while, or at least not well enough to support me.

The seizures hit me throughout each day, sometimes one kind, sometimes the other, sometimes a bit of both. I tend to get cold and clammy feeling during them or right after, often pale-skinned. They can last a few minutes or an hour. The medication I’m on helps to keep the duration shorter and relieves the pain a bit. My first dystonic seizure, by the way, lasted four hours and I broke the recliner I was sitting in! Thinking it may be an allergic reaction, a doctor on the phone suggested taking Benadryl and that finally settled it down. That’s been the only thing to stop the bad ones from getting any worse.

I mentioned this to someone on YouTube once, saying how I didn’t know why it helped so much, and someone with the username of blobvision offered this useful reply: “Benadryl is also useful for migraines. That’s what I take when I get them and they go away within an hour or less. It seems that it has positive effects on certain neurological problems. Also, it helps alleviate certain symptoms of vagus nerve damage. Benadryl is from a class of drugs called anticholinergics, which affect the parasympathetic nervous system. That’s why it helps with medical issues like dystonia.” I’ve been told since then that it’s often given to those with Parkinson’s to alleviate tremors.

In addition to the seizures, I also might go a good half a day with pins and needles in my feet or hands. Frustrating but nothing debilitating. I have a lot of moments of confusion and trouble concentrating. My muscles twitch often and my vision blurs. I went to an eye doctor right after a seizure and he didn’t have to dilate my eyes. They were already dilated! I have severe migraines that I take medication for. At times, the headaches are simply the muscles in my forehead having dystonic spasms. My throat acts up once in a while where I have trouble swallowing or talking. It’s sometimes comical when my voice changes as though I inhaled helium. I call it my Joe Pesci voice!

Conversion Disorder Triggers! What sets them off? Here’s a list:

1. Stress is a big trigger. Good or bad, if I get any sort of anxiety, I’ll be having a bad day of seizures.

2. Fatigue. I have sleep apnea so that was aggravating it until I got the CPAP machine to help. Also, I take medications to help with insomnia. See, I’ll be dozing off and start twitching or twisting in my sleep, which wakes me up. The fatigue of that will set off a seizure. I had a bad experience with Restoril: it gives me bad dreams. This added stress was causing actual spasms while in deep sleep. I was pretty sore when I woke up!

3. Emotional shifts. If I get pissed off. If I laugh too hard. If I get depressed. If I’m given an unexpected kiss. I’ll drop like a sack of bricks. For this I take Prozac. For me, it’s not for depression, but to keep my emotions more controllable. Once, I stepped into a restaurant, said, “Oh wow, this is nice!” and then I had a seizure. So if something impresses me unexpectedly, that’s all it takes.

4. Sudden sounds. I’m a fainting goat, no kidding. I’ve been in a grocery store and a bell sounds off – I have a seizure. If it’s quiet and the phone rings near me, out I go (I call it the startle box). You get the idea. The Prozac helps with that, as well, because I’m more mellow. But as much as I enjoyed the Fright Night movie remake, when that woman blew up in the sun, I jumped and… well, I had to finish watching it the next day. When taking a shower, I tend to turn the radio on, things like that to keep me from getting startled in case something falls or whatever.

An interesting note is that sudden sounds (or certain noise) cause actual physical pain, more than just the spasms, etc. It’s like a taser being placed to my head. If someone sneezes, the dog barks suddenly, babies cry (especially the loud yells and more so over the phone or Skype where it squelches more), someone calls on their cell phone so it’s squelchy, road noise in a vehicle (that hum of tires on asphalt), elevators beep, or if I’m in a store and the overhead speakers are letting off static noises, it’s like painful jolts of electricity going through my head. If allowed to continue, my vision blurs and crosses, then I’ll continue to degrade toward a full-blown seizure, especially muscle spasms across my forehead, from one temple to another. If startled, I’ll still drop, etc, as mentioned above, but you might hear me grunt or cringe first, and you’ll know why.

5. Some visuals. I say “some” because this isn’t the same thing as flashing lights causing seizures, as with epilepsy (video games, etc). I play video games often to pass the time without problems because my seizures aren’t photosensitive. The only ones I have to be careful of are when things jump out and startle me. I can’t put my finger on it, but the only real visual things that can set me off are a particular dim, energy-saving light – those ones that have almost an orange or purple hue. It seems when a bulb is not quite on or off, it does something to me. Not flickering, just inbetween. Unfortunately, more and more places have this sort of lighting.

6. Sometimes it just happens. I don’t always need a trigger. While I type this sentence, everything is cool and yet my right foot is twisted in an odd angle. It will eventually relax. Or I may get worse. Moment by moment is how I take it.

Well, that’s all I can think of for now. I’ll try to add more as I think of it. Getting back to my recent hospital stay, I was astonished at how despite how well I’d explained my condition to them, it didn’t really set in until they saw it for themselves. And likewise, people on YouTube filming their attacks are helping to raise awareness, putting a face on the illness. I struggled with the idea, thinking I’d be unable to do it, but seeing how it affected others (yes, it scared the crap out of them but they appreciate the severity of Conversion Disorder and certainly know more about it now), I decided to keep the laptop near the bed one night.

And sure enough, I woke up once with hard twists and twitches, and that familiar feeling that I was losing control. I turned on the lights and hit “record” in time to film it, and now I can add another face to it in public.

I seriously don’t recommend that my friends watch it because it’s fifteen minutes of me in my usual, everyday pain. I mean, go ahead if you want, but you won’t like it. It’s not pretty, but I did it for educational purposes:

Click Here for a helpful tip based on my own experience: Help yourself out of a seizure!

CONVERSION DISORDER UPDATE:

As of late January, 2014, I’m having about 2 seizures a day on average and all the usual issues inbetween: trouble moving about due to weakness or simply all-over muscle soreness from the seizures. This is all thanks to including Vistaril with my medications, which, like Benadryl, is an antihistamine in addition to anti-anxiety. Cutting from 2-3 a day from 5-6 a day is quite a change!

I’ve noticed my blood sugar tends to rise before a seizure and lowers after – just my own observation, nothing super-scientific. I still fall on occasion, sometimes I can feel it coming with the room spinning and sometimes my eyes roll up before dropping, but I always remain conscious.

Instead of using a walker, I have been able to stick with a cane, which is better, though I’m always looking around for where to sit in case there’s a loud noise… if I can make it instead of hitting the floor, lol.

Here are the meds I take and why (related to my Conversion Disorder), and this is what works for me. Always check with your doctor for what may work for you:

Vistaril: 50mg capsules, 3 times a day. It’s a non-habit forming antihistamine to work as the Benadryl helps but throughout the day, decreasing seizure activity and also decreasing some anxiety.

Topamax: 25mg tablet, 3 times a day for migraines and motion sickness. I still get migraines after a seizure and lingering ones at night, but nothing like before.

Benazepril: 20mg tablet, 1 in morning and half in evening for severe muscle pain.

Requip: 1mg tablet, 1 in morning and 2 in evening for twitchy muscles and spasms that occur throughout the day, otherwise, and keep me up at night. Similar to restless leg syndrome but all over, and it still happens but not as severe.

Ambien: 10mg tablet at bedtime.

Baclofen: 10mg tablet 3 times a day to relax muscles which are nearly always tense, otherwise, and thus, causing more weakness, etc.

Trazadone: 75mg tablet at bedtime to help rest and decrease anxiety.

Just before going to sleep, my mind will somehow fight it by causing a strong, painful twist in my arms, legs, neck, or waist.

*Regarding sleeping pill alternatives, I’d tried Restoril – my hands and feet would twist and tighten up through the night while I slept, so not good. I also tried Valium and it increased my seizure activity, possibly due to the lingering fatique the next day. I was on Ambien for a while but I was having a problem with getting up and typing strange things online, and also purchasing things without remembering the next day (a common side effect, apparently).

Prozac: 10mg at bedtime to help rest and decrease anxiety – less chance of changing moods quickly, even as a normal person would, which might trigger a seizure.

And of course liquid, children’s Benadryl is given to me, squirted in my mouth during a seizure since I can still swallow. It’s much easier than a pill! I’m given the equivalent of 50mg and makes the seizures stop very quickly as opposed to going on for an hour or more.

CONVERSION DISORDER UPDATE:

In mid-2014, I had to face some harsh realities that my biggest trigger was my wife, whom I’d been taking care of for fifteen years as schizophrenia ravaged her mind more and more. The insomnia? It was from literally sleeping with one eye open too much, never knowing if she was going to get up and try to walk out the door and into traffic. Or perhaps something else that would hurt herself.

I lived with a chain of keys around my neck because I had all the chemicals, medicines, and knives locked away. I say “chain” because it was heavy, so I always knew it was there and not misplaced. All through the day, I’d hear her repeating, “No, no, no…” or “Blood! They’re gonna get me! Blood! Blood!” and I’d be trembling with stress while trying to calm her.

That was my broken shell that couldn’t heal. My neurologist moved out of the country, and before leaving, he said, “You are at a point where you can improve, but you won’t until your situation changes.” And he left it at that.

I had to face the fact that I could no longer physically care for my wife, and she agreed. We divorced and she was set up in a home. And I have, indeed improved, only having a few seizures a week instead of a day.

If you suffer from Conversion Disorder, I hope this page helps you figure out your triggers, or at least get you started on the right path for it.

  • Bev Beckstein

    hello,i have had same condition since 2008, any thing set me of. though i have gone noise sensitive, so loud noise’s can effect me, i have non epileptic seizures and functional weakness, always full conscious. i also take trazodone, diazepam, sertraline.

    • JerrodBalzer

      It’s a tough beast to live with, and while I’d never wish it on anyone, it’s still a bit comforting to know we’re not alone in the struggle. Hang in there and hugs to you.

  • Brittany

    Wow this actually helped so much, thank you for sharing! I am 16 years old and was diagnosed with conversion disorder about 6 months back and ever since having my first episode my eyes are always super dilated and its nice to know its a side effect and nothing else I should worry about, I have about 2-6 episodes a day but they diagnosed me with the disorder and didnt continue to plan a treatment or medication, they told me there wasn’t anything to help it.

    • JerrodBalzer

      I’m thrilled to help in any way possible. I had my annual eye exam just last week and they had the dim, energy-saving lighting, which is a bit of a trigger for me. I took some Benadryl to head off an oncoming seizure (which did the trick) and sure enough, they checked my blood sugar and it was on the rise, and they didn’t need to dilate my eyes because they already were! I joked that it was my superpower 😉

      • Brittany

        Hahaha! Thats cool, I tell alot of people I am possessed! I have so many people commmenting on my eyes all of the time though, the super power thing is funny though I might steal it from ya and use it!

        • JerrodBalzer

          There you go! I do keep sunglasses handy, though. It tends to make you more sensitive to the light.

    • Angel

      Hey I’m 16 going on 17. It’d be really nice if we could talk

      • Brittany

        Im 17 now :)! And yea I would love to talk to ya! What about?

        • Angel

          Just dealing with these things when you’re trying to just live your life like everyone else our age.

  • metoo813

    Hi, glad i found this site. My wife has been diagnosed with this condition just recently as she was paralyzed on her left side and was unable to speak. We took her to the hospital and after various scans and tests all results came back negative. Additionally, our daughter who is now 10 is experiencing the same exact symptoms. Would you happen to know if this is hereditary? It is very difficult watching my wife and daughter go through these episodes, hopefully now that we know what it is we can try to identify the triggers that cause it.

    Thanks!

    • JerrodBalzer

      To my knowledge, it’s not hereditary, though our abilities to handle stress is, and chronic stress can affect our DNA (according to some documentaries I’ve watched). Believe it or not, Conversion Disorder has been linked to mass hysteria, where multiple people in an area suffer from similar symptoms. This happened a year or so ago with several teenagers. It put CD in the news for a few months. It’s very unclear how all that works, though I imagine it’s something picked up on a subconscious level. Perhaps the brain is saying, “Oh, so that’s how I’m supposed to deal with stress and anxiety,” and mimicks it, completely out of the victim’s control. I’m only guessing, naturally.

  • Stephanie DeCosta

    hello I am very glad to know that others suffer with the same diagnoses as myself. I myself had to play ring around the rosy with many doctors. I’m still in the process of trying to get my conversion disorder a bit controlled. The start of my story is a bit different. This started when I was in kindergarten. I didn’t go through any traumatic event or accident. The cause of mine is still unknown. I am trying to find others out there to confide in who go through this conversion disorder as well. Having any type of disorder can make one feel alone in a world of people who do not quite understand, especially if the disorder is not well known at all. I would be very grateful to anyone who wouldn’t mind confiding in each other about this.
    you can most likely email me at stephdecosta@aol.com

    • JerrodBalzer

      It sure is frustrating, isn’t it? Especially when doctors are struggling with it, as well. You wait for months for an appointment, only to be given vague this or that, and then more appointments for several months ahead. That’s how I was feeling until, one night, I happened to type “Conversion Disorder” into YouTube and find some videos of fellow sufferers. I was tears to see others going through it, but at the same time, there was so much relief to have that confirmation of its definite existence, and to know I was not alone. Sometimes, it’s our only rock in the sea of confusion. I can be reached via the Contact Me part of this site, by the way. Anytime and by anyone.

    • Angel

      It’s really nice to know you’re not alone in this fight and confusion 🙂

  • Dr. Gossadi

    My wife is suffering since three years. She has exactly the case you have that i see in your uploaded video.
    Usually she has this case after emotional stress. Otherwise she is fine.

    I don’t find clear diagnosis till now.
    Please if you find curable medication just contact me on this e mail
    Drgossadi@gmail.com

  • Dr. Gossadi

    Hi, JerrodBalzer
    Thanks a lot for your reply on google. really, this webpage is very informative and help full.
    I reviewed most of the medication you mentioned below and it is almost save but some of them should be taken under supervision of doctor and not be taken together.

    • JerrodBalzer

      Oh, absolutely! My medication list is completely prescribed and managed by doctors. In the States, at least, they can’t be acquired without doctors. The only thing that is over the counter is Benadryl, which I take as needed when an actual seizure is coming on. It really puts the brakes on them, especially in liquid form because it acts faster (Children’s Benadryl). I share my med list mainly for others to share with any doctors who are scratching their heads over this. It’s not a perfect recipe because everyone is different, but it may help.

  • Angel

    Hey I am 16 living with conversion disorder. I can definitely relate to the emotional shifts triggers. One second you’re commenting on something that impressed or disappointed you and soon enough you’re waking up unable to move or talk properly. I gotta say my recovery has been pretty good. In 3 years I’ve gone from 7-10 seizures(from 2 minute to 2 hour episodes) a day to maybe three times a week (my good weeks). I still get daily symptoms though. Do you wake up with a numb, foggy, tingly feeling all through your body and mind? Or just suddenly lose the ability to move your legs or open your eyes during your normal daily activities? I do. Frequently. I want to get a wheelchair for part time use. Fatigue is a really bad trigger for me. I am slightly unfit (not really my fault considering everything above) but you’d think walking up a flight of stairs wouldn’t wipe me out for 5 minutes to even a whole day. Do you think I should try a wheelchair? And if so how do I tell this to my supportive but slightly fed-up parents?

    • JerrodBalzer

      HI, Angel! I do, indeed, have issues waking up where I’m unable to move or open my eyes though I’m awake (cataplexy). When this happens and my mother stops by to find me like that, she squirts about 12mL of children’s Benadryl in my mouth (since I can still swallow) and it knocks me right out of it. It feels a lot like sleep paralysis keeping a firm hold.

      And yes, it seems only a little bit of exertion is all it takes to start breaking me down. Fatigue being a trigger, it doesn’t take much activity before anybody feels even the slightest bit of fatigue Everyone gets even the tiniest bit tired after walking up a flight of stairs, right? Well, for a conversion disorder sufferer, this can lead to that familiar light-headed feeling and the legs buckling underneath, etc. Things just stop working correctly. It makes doing things around the house take forever! Stop and go, stop and go… but at the same time, you can’t let it stress you out because that’s another trigger!

      On my bad days, I sometimes head for the electric shopping scooters or wheelchairs when grocery shopping. Not only all the walking around, but seeing so many labels on a shelf, the lighting, random loud announcements on the overhead speakers, plus children screaming, there are just too many things that could kick off a seizure so it’s best to be sitting down. Even on good days, I walk around with a cane to be safe.

      Naturally, I’m not your doctor and he/she would be the one to recommend a wheelchair, but for day-to-day use, I would personally avoid one if at all possible. My reasoning behind this is because we want our legs to be as strong as possible. As they become stronger, it’s that much easier to keep from falling during those weak moments throughout the day. The more we give in, the weaker we allow ourselves to get, and the more it will hurt us in the long run. Stay strong!

      A few years ago, I was using a walker around the house often because I had no other choice. As I slowly got better, I went to a cane and then nothing just within the house. Then I began taking short walks (very short!). Nothing too tiring, just to get used to doing it. Now, after a LONG time, I’m up to walking around the block with no troubles, and I do that two or three times a day. I keep a little bottle of children’s Benadryl in my pocket in case I begin to feel bad, so I can just take a drink and keep moving. Keeps it all in check.

      Basically, learn your current limits, then push them a little each day. Don’t give in to them.

      I hope I’ve helped!

      • Angel

        Thank you that is helpful. My mum used to get me a wheelchair for shopping which I very much still need but I guess now what I get is ‘snap out of it’ and ‘just a bit further, we’ll be done in half an hour’. I’m just hoping to get one for school. School is full of screaming and fatigue and heavy text books. I think it would improve my learning capabilities if I wasn’t as exhausted. I’ve sort of gotten over stressing about possibly having a seizure. Seizures are horrible every time but I’ve learnt to just say ‘okay, its happening and it’ll be over soon’. It helps to have a couple of preventable triggers. I used to be triggered by flashing lights but now that only affects me if I’m already tired.
        I plan to keep up walking and I do love running. I have a skateboard and a bike. I guess it’s about choosing the right times. If I want to ride my skateboard I need people with me and the option to lie down every few minutes. I also love soccer which isn’t something I can play properly anymore.
        Anyway, I guess what I’m trying to say is that I won’t be giving up on my legs, just improving my education and shopping experiences.

        • JerrodBalzer

          Ugh, school would be difficult for sure, especially with the extra difficulty in focus and memory that comes with this, added to the usual everyday struggles. I hope the other students don’t come down too hard on you. People can be cruel, sometimes, but keep your chin up. You’re not alone.

          In this page’s sidebar, I have a link to a post I’d made to help yourself out of a seizure. It’s something I’ve worked on over the years. It’s not a perfect method that works all the time, but it does help me a lot. Maybe give it a try.

          You definitely have the right attitude about it! It’s so easy to panic when it’s happening, and often the stress of others’ reactions around you can intensify it. But yeah, you just have to accept it, calm down, and get through it, ignoring everything else until it passes.

          With your parents, keep in mind how stressful it must also be for them. It’s not your fault and I’m sure they know this. When they get frustrated, it’s most likely because they feel so helpless. When a loved one is going through such experiences and there is very little that can be done, it’s easy to snap here and there because they want to make the pain go away but how? Just imagine seeing your baby go through so much hell, right before your eyes, and being unable to do anything about it. It can be infuriating! They’re surely keeping a lot of their own emotions bottled up in an effort to stay strong, which isn’t healthy. This can lead to the occasional burst. This is where you need to be as supportive for them as they are for you. You’re a team!

          A few quick tips: White noise can be a trigger, so try finding quiet, relaxing places like parks, etc, to ride your bike and skateboard. The sound of traffic can wear you down faster. If possible, bring your parents along sometimes so they can relax, too! They need it. Wearing noise-cancelling ear buds with an iPod can help with this, as well, especially during road trips, where even the white noise of the tires on asphalt can trigger something. Also, lots of people talking at once like in a school cafeteria or in the halls between classes creates white noise. I don’t know what the rules are at school, but if you’re allowed to use an iPod during lunch, go for it, even if it makes you a bit anti-social. It may improve your focus, etc, while in class. If the school is touchy about this, perhaps you parents could talk with the principal, maybe get a doctor’s note about it. Just throwing things out there 🙂

          • Angel

            School is getting better.Not long after I’d been diagnosed with anxiety disorder, I had my first seizure AT SCHOOL. It was terrible. I walked out of my english class because I was having a panic attack. Next thing I knew I was lying on the concrete with a burning feeling within my body, I couldn’t move, open my eyes and was frothing at the mouth. At the point when I woke up and became aware of this, my best friend came to check on me. She tried talking to me, wanted to know if I was okay but despite my efforts I was paralyzed and she didn’t know I was conscious. She informed my teacher, panicking. My teacher said to leave me alone. So my teacher left me there, not caring in the slightest at which point my best friend yelled at her and got another friend to help her take me to the office. At the office they informed me, once I’d started recovering, that I’d had a “severe panic attack”. I was sent home and all they told my parents was that I’d had an anxiety attack so because of that all I had to say about the experience was disregarded. My second seizure at home was when my parents started getting worried. I was frothing at the mouth and when I recovered I couldn’t talk. I was disorientated, scared and helpless. My dad doesn’t handle stress well so after what felt like forever he finally stopped yelling at me and calling me a spastic and suggested I go to the hospital. Everything from there is a blur of weeks in hospital, medication for epilepsy, having my mum help me eat and help me shower and basically getting no privacy because I couldn’t even sit up without assistance. Then there was going home, being in an ambulance, in a different hospital, etc. The other kids cared while I was in hospital but now it’s just staring and “I don’t get it” and pushing me on the stairs “you’re too effing slow”.
            I’m now back at school full time and have been for a while. The school had been really good about it until now. Now I’m treated like I’m faking or being ‘diagnosed’ with psychosis by the new guidance officer. Everything is a bit crazy now but I have an amazing best friend and he takes good care of me.
            I read your method and it’s one I try using myself. I suggest you try putting water on the inner part of your arms. It helps me.
            Hmmm yeah an iPod would be a good idea. That’d certainly be helpful. I used to use it for my anxiety.
            I absolutely understand where my parents are coming from. The helplessness makes me angry too sometimes. I guess, like me, they’re just a frustrated with my disorder and the way it affects our lives. It affects my whole family. In a way, they’re living with it too.
            It’s good to remember that.
            Thank you for actually listening and responding 🙂

          • JerrodBalzer

            Water on the arm sounds like a very interesting tip! Thanks for sharing that 🙂

            Right before a seizure comes on for me, I tend to get symptoms of a panic attack. I might also get really touchy or snappy, sick feeling because my blood sugar literally rises (I’ve tested and found this out on multiple occasions). And this past year, food will smell and taste horrible to me right before one. So at least I’m getting better at heading one off by knowing the signs. Providing I can gather myself enough, or if my mother is around to say something to me, I’ll take some Benadryl when I feel this way and prevent a full-on seizure from hitting me. I’m going to put a link to the little bottle I recently got to carry my children’s Benadryl in up there with the other Conversion Disorder stuff. It comes in very handy when I feel something coming on. Again, I’m not a doctor (have to say that), but Benadryl seems to be the only thing that helps me control them. It makes you sleepy, but over time, you get used to it so you don’t so much.

            Speaking of getting sleepy, I’m a coffee-holic and drink a lot of energy drinks to keep the fatigue at bay. My favorite energy drink is the blue, sugar-free Monster. If you’re having a rough fatigue day, that helps. BUT don’t drink too many in a day because they can be hard on your heart. Again, if you need to check with your doctor first, please do.
            But just remember, the panic attack and any other symptom right before a seizure is literally that short circuit in your subconscious at the start of the seizure. In terms of a computer, it’s like that blue screen you get saying something is really wrong and it’s about to shut down.

            Being disabled, I’m pretty available on the computer, so I’m here any time you need to talk about it. And hopefully it helps others who find the page, as well 🙂

          • Angel

            Hmm unfortunately I can’t have caffeine. My brain reacts to it the way other people’s brains react to recreational drugs. Found that out the hard way and although I remember very little of the experiences, it was pretty funny.
            Yeah I’ll take a look at that and talk to my doctor.
            Mostly I’m just told the usual ‘we can’t do anything more than keep up your appointments with a psychologist’.
            Have you ever gotten symptoms and illnesses that you know are separate to the conversion disorder but been told that they’ve already done all tests to figure out what’s wrong with you?
            It’s frustrating. It’s like now that they’ve diagnosed me they think I can’t possibly get another illness.
            Which leads me onto a small worry that I have. Do you ever worry that one day you’re really going to need an ambulance but no one will know because they’ll think it’s just the usual?

          • JerrodBalzer

            Oh, absolutely! I worry that I’ll have a heart attack or something and I’ll just be told to take some Benadryl. I have gone to the emergency room in the past for chest pains and found out it was just part of an anxiety attack that came out of the blue (I was relaxing, watching a movie). So what if the real thing happens? Will vital help be delayed? But honestly, worrying too much only hurts us more. Focus on improving and that worry can go away 🙂

            In addition to a neurologist who is familiar with Conversion Disorder, the very best professional to seek out is a Cognitive Behavioral Therapist. Most places that offer therapy services have one. A good CBT will help you dig around to figure out all of your triggers, what methods of relaxation work best for you, and may even help find what’s causing it. Often times, just talking it out with the right person solves a lot of issues. A lot of these places have pay scales, too, based on income. I know they can be expensive so make your parents ask about such things if necessary.

            This is a great book for families and sufferers alike when dealing with this, btw: http://amzn.to/1Q2D9zq

          • Angel

            Thanks for that link. I’ll talk to my doctor about a CBT, I live in Australia and I may be able to see one through the public system.

          • JerrodBalzer

            That’s good to hear! Keep me posted on your progress 🙂

          • Angel

            Hey, I’ve been so busy lately. School block exams were so hard for me. Having two exams in one day made my mind slow down and then just stop.
            I haven’t been able to see a CBT but I have discovered sensory processing toys online and I’m going to have some new strategies for the new year. I really hope they help improve my quality of life. I’ve been experiencing new symptoms but also coming to understand some of the familiar ones. Everyday is a battle for me and I’m going to start facing this with the attitude of a winner, I have after all survived this long. For the new year I will start carrying a bag of sensory toys and earplugs and not caring what anyone, even my family thinks of this. They might be worried I’m being overly cautious but if I have a helpful bag with me wherever I go I may be able to go out more and actually enjoy it.

          • JerrodBalzer

            EXACTLY! I love, love, LOVE your attitude! Adapt and conquer. This will not beat you down but make you stronger. If someone asks why, don’t be shy about it. Educate them to spread awareness. And if someone can’t accept that you do different things, oh well. I refer to one of my favorite songs by Depeche Mode, “Walking in My Shoes.” https://www.youtube.com/watch?v=GrC_yuzO-Ss

  • lori relf

    Hi, My name is Lori. I am curious how they discovered that you had conversion disorder? I tried to read your whole introduction but I am unable to focus and my attention span is short as of late. My short term memory has also been affected. I have these “dystonic reactions” or “spells” as the doctor would like to call them. My body goes into a seizure like mode and my jaw and facial muscles are contorted and spasm. I do have Spasmodic Torticollis which is located in my neck but now I am wondering if I could also have this as well. This is so frustrating. My neurologist has no clue what to make of it and is sending me to Psychotherapy. I just needed to vent. You are very brave and helpful to send this message to everyone. Thank you.

    • JerrodBalzer

      Well, it’s a neurologist that needs to make the diagnosis, but there are many who are not knowledgeable on the subject. Even in the university hospital where I was diagnosed, only one of many neurologists knew how to work with it. They get the diagnosis by monitoring you overnight with both video as well as all the hookups. It’s a routine monitor for seizure activity, looking to catch your episodes, and the video part is essential. They can use the results to tell if the episodes are epileptic or non-epileptic. If non-epileptic, they’ll then know you’re most likely suffering from Conversion Disorder, also known as PNES (Psychogenic Non Epileptic Seizures). A large part of the treatment is Cognitive Behavior therapy, so when you see the Psychotherapy offices, be sure to mention this. The main part of treatment is figuring out your triggers and working to control them.

  • H.B. Kaye

    Discussion on Balzertown 32 comments
    Conversion Disorder
    H.B. Kaye
    H.B. Kaye 13 hours ago
    Detected as spam This isn’t spam »
    Thank you everyone for commenting- I too have conversion disorder- triggered by years of physical, emotional, mental stress, anxiety, depression, chronic pain, fibromyalgia, chronic fatigue, vassal vagal disorder etc. Mine started when I was 18 and in college- I am a perfectionist who goes far beyond what most people have to do because of being a premie, and growing up with a cognitive delay. The amount of pressure I place on myself for being reliable, hardworking, but also living in fear of failure for the 24 jobs that I have had has taken it’s toll. In every job I only could manage 6-8 months before my conversion disorder brought me literally to the floor.
    Now I am 35, disabled, and trying to find my identity, since I can no longer prove myself physically. This was more evident then ever when I became fully paralyzed every day of my college career. Like others of you, I cannot even move my fingers to pick up a pen without breaking a sweat. I feel like I am trying to lift an elephant. A feeling like being swallowed in cement. I went through every test available, and the end result: you have conversion disorder, brought on by living in the fight or flight mode for 15 years. But other then that, you’re in perfect shape- ha!
    My daily life now is living apart from most of society- the noises, motions, smells, lighting, etc, and chaos of everyday life overwhelms my nervous system. I cannot go in public without someone escorting me, or without my cane. It grounds me when I have no ability to stand or walk normally. I rely on the generosity of family and friends to take me outside of my home just to do basic things. I wear a hat and dark sunglasses daily to cut down on the stimuli.
    I am also an artist, a musician, a wife. I am blessed to use these abilities as able, but my day to day, hour to hour cannot be counted upon. If I can do the dishes, I’ve had a successful day. All these things take a toll on my emotional and mental state- I constantly have to tell myself I am not a failure, I am still a good wife despite not checking off my to-do list. Just this last week, my husband and I had to put down our sweet dog Bruce. He was our child, and my sunbeam on happiness on the days that I didn’t want to go on. This took a huge toll on me, and this last sunday, after playing the drums at church, (exhausting me physically) I had one of the worst episodes I’ve had in a long time.
    What was worse, was not the paralysis, but being unable to communicate to people 3 ft. Away- I had been resting on my cane, in a chair, when I felt my body shutting off- oh crap, here we go again. Then gravity slowly made me slump to the side- later I heard people say they thought I was “resting”- does this look comfortable to you!!? I managed to cause myself to fall, a face plant into the floor before people rushed over to me. My eyes were frozen open, and I could hear and feel people checking my pulse, calling the ambulance. The whole time I was aware, but helpless. At least this time, I was with people. When i worked independently as a professional cleaner, I had multiple “episodes” that left me stuck, contorted in a non-epileptic seizure for an hour or more. I made sure to take my xanax- maximum dose- to keep me from panicking. But then I was alone, and that feeling of being helpless to this disorder makes all of us crazy.
    I am grateful for all of you posting your own stories. I would like to know what you have done to help you cope and move forward, and not be “stuck” in life. My therapies include naturalpathic cranial sacral adjustments, message, back manipulations, acupuncture, etc. I wish you all well. Please feel free to write back. I need all the support I can get, from people who have been there, living it daily. Thank you again. -mk

  • Regena

    I have a question I was just diagnosed with conversion disorder. But I’m not so sure that’s what it is. Here is what happens. I get a fast heart rate (in the 180’s) then get short of breath and eventually pass out. To the point I don’t know what’s going on. I sometimes go in to respiratory failure and wake up the next day on a ventilator or a bipap machine stuck to my face. After I wake up I feel so groggy and a little confused. I don’t think it is a conversion disorder. I’ve had about 15 hospital visits like this in the last year. A psychiatrist didn’t diagnose me but a hospitalist did. What do you think conversion disorder or not?
    Thanks and hope you are doing well

    • Jerrod Balzer

      Hello, Regena! Wow, that must be horrible to go through! Hugs to you. Conversion Disorder comes in many forms, really. They are limited only to what the unconscious mind can think to do with our physical bodies. Naturally, I’m no doctor so I can’t say for sure, and it’s a neurologist that gives the best diagnosis. However, the illness is, at it’s root, an anxiety disorder. In essence, an episode is a panic attack times a thousand. It’s when your subconscious mind has had enough stress and freaks out one way or another, but against your will because your conscious self is otherwise under control.

      My mother knew a man who went deaf until he divorced his nagging wife. Then his hearing came back. In the HBO miniseries “Band of Brothers,” a soldier goes blind on the battlefield but is okay after he has rested, and this was based on a real person. There was once a woman who was pronounced dead because her heart rate slowed to the point of fooling the doctors. During a scan in the hospital once, I even scared some nurses who thought I had died on the table. I was unable to move, staring blankly, and my breathing and heartbeat slowed. These are all examples of the many ways Conversion Disorder can strike.

      One thing you’re suffering that is very common with me is the confusion as an attack sets in. And my blood sugar shoots through the roof, and I never mentioned it but yeah, my heart rate usually jumps up during the nasty ones.

      It never hurts to keep checking for other causes, that’s for sure. In the meantime, give a good hard look at your current lifestyle and see if you’ve perhaps been putting too much on your shoulders lately. Many of us pile it on because we figure we can handle it. Maybe you’re like me and work best when under pressure. But it took its toll on me because we’re more fragile than we think. Try to remove some stress from your life and take more time to relax. I imagine you’ve earned it. Then see if these episodes let up.

      • Regena

        Thank so much for responding so quickly. I really don’t have a lot of stress in my life at this moment. Just a son that has ADHD was diagnosed several months ago. He’s not difficult at home just at school.
        I have other health problems one in which would explain the respiratory failure called myasthenia gravis. Though hospitalist don’t know much about it and I think maybe because they don’t know too about it they can’t figure out what’s going on with me and therefore blame it on the brain. She went as far as having me baker acted for conversion disorder. But even if it is a conversion disorder one does not do it on purpose to harm themselves or anyone else. I was discharged right away from the looney bin. When I feel it coming on I try to relax and take it easy but it still happens. I take several antidepressants. Prozac, seroquel, abilify, Wellbutrin and klonopin. And they seem to help with my depression and anxiety. These episodes went from maybe every other month to once a month now almost weekly. I will know next week if I can be helped. I am having an ep study with ablation for the fast heart rate. One of the cardiologist that saw me said it was atrial tachycardia. So if it helps maybe that’s what it is and if it is indeed a conversion disorder it will still happen. Again thanks a lot for responding.

        • Jerrod Balzer

          One thing for certain is Conversion Disorder is not the same type of mental disorder as bipolar or schizophrenia because the sufferer still has full control of their mental faculties. In simplest terms: they’re not crazy. So if someone claiming to be a professional baker acted you for reasons of Conversion Disorder, there is definitely something fishy with that person. You may also be taking hard to some of your meds, or some may not be interacting well. The ep study should give you a lot of answers. In fact, it’s generally not good for a doctor to diagnose Conversion Disorder until after a full video and audio exam has been done to rule out epilepsy as the cause. There are doctors out there who throw this diagnosis around because they’re too lazy to dig deeper. It makes it more difficult for the real sufferers to be taken seriously. I wish you well in your search for answers and I hope you keep me posted here, regardless of your findings. It sounds like you have a good head on your shoulders, no pun intended (lol).