***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 Lea’s videos, documenting some of her seizures and I found her blog. Please visit it HERE and bookmark it. Spread the word if you’d like to help inform others. The organization she mentions has been put off because, as anyone with Conversion Disorder knows, we try to do constructive things but the added stress makes our symptoms worse. Anyway, I was so impressed that I emailed her that night, and I try to keep in touch here and there without being a pest.
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? I feel that Lea says it best on her blog page. Please CLICK HERE to read her explanation of it. It tops what you might find on Wikipedia, etc. It won’t take long. Go ahead, it’s RIGHT HERE. I’ll wait until you come back. You can tell I’d really like it if you took a look, huh? Lol, here’s the link again: CLICKY!
Here is her video that summarizes her various attacks with a narrative that I find inspiring:
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 will buckle under me and I’ll drop like a rag doll. I can still see, though my eyes relax which makes everything blurry, and I can hear. People might think I’m unconscious but I’m quite coherent. My eyes are usually open, staring blank. I can swallow and I retain control of bodily functions (no messes in the pants) yet my limbs, jaw, and neck are completely limp. Sometimes I can talk or mumble, but most of the time I am 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 is fortunate for me because my Conversion Disorder has 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 get around with a walker these days, and often my legs simply won’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.”
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 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:
Vistaril has been keeping my seizures at bay! Details ON THIS BLOG ENTRY
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.
Up the dosage of Vistaril. Details ON THIS BLOG ENTRY
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.
I finally blogged about some recent breakthrough information, which is more personal but I don’t mind sharing. It can be found HERE.