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Conversion Disorder

***New medical updates at the bottom of this entry.

I talk about Conversion Disorder frequently because it’s part of my daily life. I’ve been disabled from it for a few years now, though it’s slowly affected me since I was seventeen. But the thing is, there are so many people who understandably know very little about this illness. So I find myself explaining it over and over because the more people know, the better. During a recent 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 that I have something to link to whenever I mention my disorder. It will be 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!

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, and 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 – I hope – you 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 strong bouts of 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 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!

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 Ambien 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. Switched to Restoril and it’s better than Ambien but gives me bad dreams. This added stress in my sleep is causing actual spasms while I’m in deep sleep. I’m pretty sore when I wake up!

3. Emotional shifts. If I get pissed off. If I laugh too hard. If I get depressed. If Robin walks up to me and gives me a 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 so mellow. But as much as I loved the new Fright Night movie, when that woman blew up in the sun, I jumped and… well, we 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.

*New note (5-1-13): I wanted to add that for a while now, sudden sounds (or certain noise) have been causing 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 actually 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 like Lea 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 recently 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 at 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:

*UPDATE*

Vistaril has been keeping my seizures at bay! Details ON THIS BLOG ENTRY

*UPDATE 2*

When first put on Vistaril, my seizures all but stopped. Three months later, I wanted to note that I’m back to about one dystonic seizure a day with the occasional cataplectic ones throughout. I have my days where I’m not getting around well and concentration is still rough, but I’m still loads better than before Vistaril. I see my doctor in month four after starting the med, so I’ll update again then.

*UPDATE 3*

Up the dosage of Vistaril. Details ON THIS BLOG ENTRY

*UPDATE 4*

As of late January, 2014, I’m still 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. 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 CD), 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. Just before going to sleep, my mind will somehow fight it by causing a strong, painful twist in my arms, legs, neck, or waist. The Ambien knocks me out so the other night pills can keep me rested. Otherwise, I have very uncomfortable insomnia.

*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.

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

Trazadone: 50mg tablet at bedtime to help rest and decrease anxiety.

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.

*UPDATE 5*

I finally blogged about some recent breakthrough information, which is more personal but I don’t mind sharing. It can be found HERE.

*UPDATE 6*

And here is a very heartbreaking blog about coming to grips with my #1 trigger HERE.

  • Red!

    I didn’t think my heart could be broken by a man I wasn’t in love with before, but that video had me in tears. I love you and am trying very hard not to pity you. God bless! I will be praying more earnestly for you.

    Red.

  • Casie F.

    Thank you for sharing your story Jerrod. It is so encouraging to see individuals who have a positive outlook during these situations instead of becoming depressed. I know that is hard to do because I do it on a daily basis myself. I do have a question for you. You mention you received disability in 2011. Were you denied at all? That is the process I am going through right now. 

  • JerrodBalzer

    Thank you, Casie! I had fully expected to be denied the first time around, as is usually the case with disability. My wife was denied her first time for her schizophrenia and we had to get a lawyer to help get approved the second the time.

    But with me, I was approved within a matter of months! I applied in October of 2010 (pressured by the hospital and rising medical bills) and was approved the following January. I believe that having sleep apnea contributed, plus I had a few episodes in front of the doctor that they sent me to, I suppose because I was stressed out about it.

    The important thing is to be honest to yourself, to the doctor, and to everyone around you. Figure out your limits, accept them, and adjust your life accordingly. This doesn’t mean to give up trying to meet your goals. But if you continually attempt to do things that you are no longer able to do, the stress of it will only cause more damage.

    I hope that helps!

  • jimmyzz

    Thank you for your story. I also have conversion disorder, but not in the way you do. I have migraines, stroke like symptoms, and amnesia with mine. It is so nice to find someone who is dealing with the same disorder, and is positive. I feel so lost in that no one understands what is going on, and because of the disorder my wife has decided she can no longer deal with me, took my kids, and has filed divorce stating I’m mentally unstable and a danger. If there are any support groups or anything that you know of that would help I would appreciate it.

  • JerrodBalzer

    Oh wow, that’s terrible! If you’re some kind of physical threat to her or the kids, it would be more understandable, but otherwise, so much for “in sickness and in health.” I don’t know of any support groups for this, unfortunately, though there should be. I did have a small contact form on my site but took it down because of too much spam. I need to get a new contact page up, but my email is jerrodbalzer (at) gmail (dot) com if you need to vent.

  • http://www.facebook.com/dana.cook.7393 Dana Cook

    Thank you Jerrod! I am Bipolar and was misdiagnosed with essential tremors for years until I started stuttering severely.I was re-diagnosed by a different neurologist with conversion disorder I was with my twin sister who is a very strong woman unlike me.The doctor could see I was not taking the news well and wanted to videotape me for his students and the other doctor’s at Butler Hospital this made me tremor and stutter uncontrollably while he smiled the entire time like I was a specimen, an experiment.My sister finally had enough and yelled at him that I was not some sideshow and there would be no tapings she asked him if he would write down my diagnosis for disability when they sent the form and he responded that he “didn’t like to do paperwork and would pass it on to my psychiatrist” who never got it. I did get disability with a review in 6 months because the conversion disorder wasn’t there and the judge didn’t understand how my “score” from my psychiatrist could always be a 55.The don’t know that 55 is as low as you can go without having someone institutionalized and I had already been in several hospitals and loathed each and every experience so he didn’t want to do that to me again.I do have to say as horrible as shock therapy was (only had it one time) it did help with stutter and tremors. Who knows? I do know that the doctor from Butler went to Columbia University and did his residency at Mount Sinai Hospital very reputable and he has writtern several books. You would think he would know how to treat people better specifically if they have had trauma in their lives. Good Luck to you! I hope you have a good support network I would have been gone a long time ago if I didn’t.

  • JerrodBalzer

    Hi Dana! You know, in the hospital where they did the EEG, etc, last August in Columbia, the doctor was a bit quiet in his opinion. They didn’t talk to me about it until the following December, in fact! This was because they were taking the time to study the recordings and brain waves, etc, carefully before telling me what they thought. It can be a very sensitive issue, after all, and they want to be as thorough and professional as possible. As for showing to students, well, I figure with all the mystery around CD, we want new doctors to know all they can so they can help others, right? It creeps me out knowing all those young people are watching me spazz out, but it’s for science, lol. Emotions run high with things like this, especially the paranoia that people may think you’re faking it and such, and also this being a stress disorder, it’s easy to have a panic attack. The doctors understand this which is why they don’t push too hard, but they can’t help unless you allow them. Stay strong!

  • Sandy Peters

    Jerrod. I am sorry to read about your pain. These things are hard enough to bear without the medical people and friends not understanding. My13 year old Grand daughter is in hospital now and is to be there for 8 weeks. she had a bad session last night. She is confused and unhappy as she is so young. As it is the subconscious have you tried really deep relaxation tapes. Made by the Bob Nightingale people. Anything to help. I have shed tears today for my girl which made me search online. I was in terested to see Lea. Thank you. Healing vibes to you.

  • JerrodBalzer

    Oh, the poor dear! I’m just glad she’s got a good support system at such an early age to help her cope. Me, my biggest issue is that I’m surrounded by stress triggers all of my waking hours. While my wife didn’t cause it at all (goes much farther back), caring for a disabled schizophrenic woman 24/7 keeps the stress hitting hard. But this is something I gladly choose to take on and she’s there for me when the effects get me down. We kind of go back and forth with the caregiving now. Tomorrow is our tenth wedding anniversary!

  • Cheryl

    I have dystonia disorder and my employer is being very mean due to me being off with this, I have a meeting with him in a week but feel he is going to try and sack me, is that allowed, some days I’m in a lot of pain x

  • JerrodBalzer

    Hi Cheryl! I really wouldn’t be able to answer that properly because there are so many legal factors involved, like your state employment laws on the matter or company policies on days absent. I do know, however, that one of the most difficult things to cope with when being disabled is just that: being unable to do things, including work. If the disorder is preventing you from doing the current job, try to gauge your limitations and figure out what you CAN do. Perhaps your employer can work with you on that end, as well. Often, what it takes is swallowing pride (I’ve had to) and saying, “I can’t do this anymore, but please don’t give up on me. What else can I do?” They may not be willing to cooperate, or the job may not be that flexible, but you have to look at it from their end too; they need employees that they can rely on coming in. Otherwise it’s like throwing a wrench in the whole works. Most decent employers would rather work something out than fire someone if at all possible, though, so give that a shot if you can.

  • shaz

    I have conversion disorder took two years to diagnose. I have faints and seizures. Daily almost. I dont let it ruin my life now. I get on with things and deal with f an s as i go along. Had two faints in the hairdressers yest. If anyone wants to talk about it im here sharoncarter9373@gmail.com take care all

  • JerrodBalzer

    Thanks for sharing, Sharon! And yep, it’s just an adjustment (a big one!). We adapt and persevere, but it helps to have others to talk to, for sure.

  • Chasty Toth Windle

    I was just diagnosed with this. During the seizures I know what’s going on around me. Does anyone else? Also I have a constant clicking I do with my mouth. My eyes will shut for a little while & then they finally come back open. I will have random jerks. I can’t drive right now which stinks. I have an appointment with a shrink in a few weeks. Do you all know what’s going on around you during the seizures? Does anyone do clicks with their mouth or have problems with eyes closing or random jerks with their body? Help Please!

  • JerrodBalzer

    Yes! In fact, one of the big thing that sets Conversion Disorder’s seizures (non-epileptic) apart from epileptic is the fact that we are aware of our surroundings during them, feeling every bit of the pain. Generally, an epileptic will be unconscious during this. It can be frustrating, as I mention at the beginning of this page, to hear people talking like you can’t hear them when you can, and I’ve even had smelling salts put to my nose, unable to do anything about it! The nurses didn’t know any better, though.

    We all have different symptoms and behaviors when it comes to certain specifics. I get the random jerks all the time – hate them! Generally, it’s my right shoulder, so it’s always extra sore from them. Also, my head jerks to the left a lot, making my neck very sore. But really, I get them all over otherwise, even full body twists or muscle spasms when not in a seizure.

    My eyelids often droop closed slowly like they’re shutting down or something, and my eyes dilate, like things going blurry, especially during a seizure and for a while afterward. An eye doctor confirmed this because I had a seizure right before seeing him and he didn’t have to put drops in my eyes!

    I don’t click my mouth, but then again, my jaw was messed up in an accident I was in when I was 17 (seems to be the one that helped cause my CD). My jaw is a bit stiff and pops out of place on the right side easily, where I have to massage it back in. It sometimes clicks when I’m chewing and it’s on the way “out” but that’s all. Who knows? Maybe I’d have your clicking symptom if it was in better shape.

    Cognitive behavior therapy is an excellent method of treating this, since it’s the unconscious mind literally converting stress and anxiety into physical trauma. We can’t control it consciously, so the therapist helps us tune in deeper. Keep an open mind with that and remember, this has no connection with our actual sanity. You are not ‘crazy’ for having Conversion Disorder. That other stuff is caused by chemical imbalances. This is completely different ;)

  • Chasty Toth Windle

    Thank you for responding so quickly! I can’t believe how bad your going through it. Does therapy not help you? Everything I have read is not real promising because people have this for years. I haven’t heard any great recovery stories. I am okay with my jerks eye stuff & mouth ticks now. They ware me out but I hate the seizures. We do have fun at home & work of making fun of the crazy stuff my body does. It’s best to laugh than cry. Im a very happy person. I went through anorexia, bulimia, cutting & Im bipolar. I’ve lived in my car before worked 3 jobs to be able to pay child support. Now all of a sudden this happens. I thought my crazy was gone & this shows up.

  • JerrodBalzer

    Honestly, I think I’m just finally getting into some good therapy. I had one other last year but he left shortly after working with him, and there just aren’t many around here that work with those with Conversion Disorder. Found one though, and she seems to know her stuff. Crossing my fingers!

    Attitude is everything, for sure. Adapt your life the best you can and don’t let it get you down. There is no real cure for it, just ways of making yourself more comfortable or the seizures less frequent, but one positive thing is that since the seizures are non-epileptic, they aren’t doing any serious damage to your brain each time, since it’s your brain causing them and not an abnormality IN the brain. I guess we sort of trade that off with epileptics in exchange for us being aware during the seizures so we have to feel every agonizing moment. But honestly, I guess I’d take that, if given the choice.

    Also, there is always that chance of a therapist breaking down the right wall and nearly stopping it altogether. You never know!

  • Melissa Bryant-porginski

    I would love all the help in the world of this disorder. My daughter is 9. She was recently diagnosed with this. Please anyone help with every little bit of information possible…. Thank you Melissa Bryant lyssa1435@hotmail.com

  • JerrodBalzer

    Yeah, the Internet sure doesn’t offer much besides the standard jargon, which is why I made this page to at least offer something. I feel for your daughter – that’s so terrible. You’re welcome to shoot me an email via my contact (top right corner of the site – the email pic) any time you need to vent. Naturally, I’m not a professional so I can’t offer actual advice to follow, but I can say what helps for me, as always.

  • Melissa Bryant-porginski

    Thank You from the bottom of my heart to the top of the world….

  • Hilary Day

    My name is Hilary, and until 1 year ago, I was basically a 26 year old invalid, suffering from what I did not know was Conversion Disorder. I suffered the SAME symptoms as you do, and was told that I was either faking or dying of some terrible, rare illness. I only became well after suffering a medical emergency in New York city around a doctor who had treated conversion disorder in Hurricane Sandy and 9/11 victims. PLEASE contact my doctor located at University of Irving Dr. Adrian Preda, HE SAVED MY LIFE, I was given affective hypnotherapy (which I thought was not going to work) and no longer have to take ANY medication. https://www.doximity.com/cv/adrian-preda-md/1 I am now 100% seizure and medication free, and living a normal life again.

  • JerrodBalzer

    Thank you for the advice, Hilary! I was recently discussing this with my therapist, in fact, and I saw that a hypnotherapist recently opened shop near me, so I was considering looking into it :)

  • Hilary Day

    i STRONGLY suggest that you contact University of Irvine…there is A LOT of voodoo BS out and about, and improper therapy can exacerbate or worsen symptoms. The doctor who preformed my therapy at UC Irvine was a part of a entire team devoted specifically to abnormal psychology and neurology. I showed a total turn around in symptoms within less than a week.

  • Angela

    Thank you so much for your post…my 11 year old son was diagnosed with conversion disorder about 6 months ago, and his main symptoms were total or part paralysis, anxiety, deafness, inability to speak etc. It wasn’t until the last few days he has started having violent seizures, and by putting “seizure” into my searches I finally came across this most helpful site! I have emailed the Dr you mention, desperate for some help. We live in NZ, miles away, but whatever it takes, especially for your children. Many thanks again!

  • JerrodBalzer

    That is exactly why I did this! We all need to reach out to one another because it’s awfully scary alone. Hugs to your son!

  • Brittany

    Do you talk or mumble trying to tell people what is going on while having seizures?

  • JerrodBalzer

    Before or after one, I tend to mumble or have slurred speech, but during, I can’t talk at all, save for grunting and groaning from the pain, and sometimes what some call the “Grudge ghost” noises, lol. For the majority of my seizures, however, I’m suffering in silence, which is why people have to check on me steadily. The video of my seizure above rings true for most. I often feel like I’m burning up or nauseous shortly before so I can expect one coming. I’ve also found that my blood sugar rises sharply right before one, then drops back to normal directly afterward. It’s probably contributing to the sick feeling.

  • Angela

    I have emailed and left phone messages with the University of Irvine, but had no response. Would you have a contact name/email for Dr Preda? My son is not getting better and the Drs here don’t know what to do next. Many thanks!

  • Pickle

    Thank you for writing this. I was diagnosed with this recently. I have lesions in my brain, wearing clothes hurts sometimes, they have diagnosed me with hemiplegic and basilar migraines, transient alteration of awareness. Temperatures effect me, hot or cold. My muscles hurt extremely bad if I don’t pace myself. Do I truly accept this diagnosis.. No. I do believe it is some kind of autoimmune disease. Either ms or RA. They tried to throw me under the fibro bus but I wasn’t accepting of that and filed a complaint on this big shot headache doc that suddenly diagnosed me with crazy but neither my Ms neuro or the headache doc would tell me. Some other neuro sent it to my reg doc to tell me

  • JerrodBalzer

    Oh boy, the part above where I mention how I went to various doctors for dizzy spells and such before it was discovered by a chiropractor that my skull was shoved into my brain and causing pressure swelling and a myriad of other issues? Well, one of those doctors was also a big shot who specialized in dizzy spells. He took one look at my long hair, boots (I wore motorcycle boots then because it helped my balance and the steel toes helped for when I kept stubbing my toes on everything), things like that and he thought I was some rebel loser. He put in his report that my wobbliness was intentional and I was putting up a front to mooch off of my mother.

    Some doctors just want the easy cases (easy money) and make up excuses when a challenge comes along. It’s why when you find a doctor who gets excited to take on a challenge and work with you closely, stick with them and be patient.

  • Ajokd

    Hi Jerrod, I am so glad you posted your story. I found out yesterday after my most recent trip to the hospital that I may have conversion disorder, however mine would be so different from yours. I have stroke-like symptoms (3 months), migraines (3 years) with some occasional memory loss time/day (2 months). All testing and there has been lots of it, has been negative so far; so the hospitalist believes this could be CD. However he did not have any recommendations as what type of doctor that I need to see as he just doesn’t know enough about the condition to give me a direction. His only recommendation is seeing a academic medical facility. So is there a specialty (i.e. neurology) that specifically treats this? Any information is appreciated. Thank you!!!

  • JerrodBalzer

    Hello! And yes, it can affect everyone differently, while with others, it changes as it goes (it has me). The best bet is definitely a neurologist, and in addition to that, a cognitive behavior therapist. The neurologist can help on the medical end of it, treating you with medicines to help relieve you of all the pain you’re going through and try to make each day more bearable, and the therapist works with you to dig inside and figure out what could be triggering this subconsciously. With both working together, you can accomplish a lot!

    Both won’t be found in a same department, and whether or not a medical facility has both depends on the place. I’d start with a neurologist first, and he/she may be able to recommend a good cognitive behavior therapist. One important thing to remember is while it’s a disorder in the mind, it’s is not a chemical imbalance or the like. You’re not crazy. The brain is still such a mysterious, powerful thing and it’s simply doing abnormal things to otherwise “normal” people. It’s something that a lot of people struggle with when first diagnosed, wondering if they’re losing their mind. Nope, it’s still there :)

  • Ajokd

    Thank you very much for your quick response and most importantly the information. I wish you and yours more good days than bad!

  • Amber

    im not really sure how to use this but I also have conversion disorder an I am looking into starting a blog and to follow others, I am hoping it will help me cope with it all and get a little more closure with accepting the fact that it is now a part of my life. thank you for sharing

  • JerrodBalzer

    Good luck, Amber! The more of us out there talking about it, the more fog that’s lifted around it for others :)

  • Kay

    Thank you for sharing convention disorders are so difficult and so misunderstood..

  • Dlh55

    OMGosh!!! I’m so relieved to find your article. I feel like I’m the “crazy lady”! My symptoms have only been going on for a few months. The frustration with the medical community is wearing the fight out of me!!
    I appreciate your honesty and medication suggestions.

  • JerrodBalzer

    A lot of the times, doctors want to help but don’t know where to start. Hopefully, something like this can offer a nudge, or at least get the gears turning.