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Conversion disorder frustrations

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Conversion disorder frustrations

Postby alycorn » Sat Dec 09, 2006 5:56 pm

Hi everybody,
hope things are still at least somewhat active here, since it doesn't seem like there's been many posts recently. I've been dealing with depression since I was six, and about 7 years ago(when I was 20) I started having conversion symptoms. In my case they were muscle jerks. They started as body trembling, near to a pseudo-seizure but not as violent, and got worse. The apparent cause was a unhealthy relationship I was in. The short version was that he would consistently get into a fight with me, walk out, and vanish for up to a week or so, then return and behave as though nothing happened. If I had any emotional response to his behavior, he'd vanish again. Bear in mind, we were at university, and the school had about 1300 students, so it takes incredible dedication to vanish for that long. He broke up with me, then tried to get back together with me, then left, etc, for the entirety of the school year(after we'd been dating, and he'd seemed...stable, I suppose...for the first year of our relationship). At the time they diagnosed me with 'myoclonic episodes' and left it at that. They gave me clonozopam, and eventually the symptoms settled down. For the next three years, I got along pretty well, occasionally having mild symptoms(for a week or so), but they'd go away again, so I pretty much ignored them. In 2003, my bladder stopped functioning properly. I suddenly felt a constant need to urinate, could never empty my bladder, and I was, to put it simply, miserable. I was told I had a UTI, and put on meds. A month later, nothing had improved, and I was sent to urologists. Who couldn't figure anything out either, and alternated between catheterizing me and trying to give me bladder control medication for overactive bladders. The medication made it physically impossible for me to pee while I was silmultaneously experiencing extreme urgency, and the catheterization actually gave me a bit of a break, other than the pain of having it put in, taken out, and having it attached to me for several days. Finally I went to see the neurologist I'd visited several months after first experiencing the 'myclonic episodes', and he had me scheduled to have an MRI taken of my spine, in case that was the cause of the damage.
During all this I had been working as a field biologist, and the apparent cause of my bladder problem was the stress of waiting to find out if the fishery observer job that I'd had and loved was going to continue - our president took his sweet time signing the budget, and ended up slashing the program's funding, and by March I found out that the job was not going to continue. I found an outdoor educater position for a brief while, then ended up banding birds a very long commute from my apartment. I took a better paying job doing chemistry work with lobsters closer to home, and had several other stresses occur that same weekend, and ended up having constant muscle jerks by the end of that weekend. I was pretty much constantly shaking(except when asleep), with more severe jerks occuring for up to 30 seconds or so every few minutes. This started saturday night, sunday, I was taken up to my parents house, and tuesday was admitted to the hospital near that neurologist. One of his colleages checked on me occasionally, they did more testings for seizures(I'd been tested around age 11 for temporal lobe seizures and when the condition had first appeared i'd had eegs, seizure testing, a whole battery of things, with no result other than 'myoclonic episodes'), and they knocked me out, did an MRI of my spine and discovered...nothing. Every day I was promised that they'd send a very good psychiatrist in to see me(I'd been off antidepressants for about 6 years at that point and was very proud of myself for that), and he never showed. Eventually one of his colleagues appeared, and by this point I was so exhausted and stressed out that she declared that I needed to be immediatly put on mood stabalizers, antidepressants, etc. The neurologist finally suggested to me that I go to the center for movement disorders in Manhatten(Columbia Presbyterian hospital), and a couple weeks after I got out of the hospital I finally had that appointment. In June 2003, I was finally tentatively diagnosed with conversion disorder. I am still seeing that neurologist, and he has at this point taken over my medication management, and is helping me to call the shots on my treatment. He sees me every 3-9 months, makes sure I'm not developing any sort of neurological disorder, and checks on my progress with the conversion disorder.
I'm now on my second psychologist(the first was clinical...talk therapy - she was nearby, supportive, but by no means an expert on conversion disorder, the second, is more about psychoanalysis and looking at relationships - he's in Manhatten - a 2 hour commute for me - but he seems to be helping), was seeing a psychitrist for med management until he refused to treat me when I changed to medicaid insurance - at which point my GP took over briefly, with my neurologist taking over a bit later when I was hospitalized.
Bouyed by having a name for my illness, I started my new job with the chemistry department of NMFS. My bladder still wasn't working properly, which was attributed to the conversion disorder, and I still had muscle jerk episodes. At this point they were not as frequent, but they looked pretty bad when they occured. I also had discussed and agreed with my doctors that I should not drive, because the muscle jerks included most major muscle groups in my body, and the fear was that I would have my legs jerk out of my control at a bad time. I was told that my condition was temporary and that I had a good prognosis for recovery. I started driving again a month later(still having episodes, but they were less frequent), and pushed myself a little too hard one week in August, and had a severe twitching episode while driving to work. I ran a red light, but avoided an accident, pulled over and tried to think for a while, then eventually drove the rest of the way, very shook up. As I was going around a sharp bend, my legs did go out of control, and I had the fright of my life, arrived late at work vowing that I would not drive until I was recovered. I walked in and was fired because my episodes were worrying my coworkers(we worked with dangerous chemicals, I was supposed to drive a truck, and I'd had to refuse to do a task the day before because I knew that if I did I would start shaking and I would ruin the project), and they decided that I could not do my job. Two weeks later I was unemployed, constantly having to pee, an emotional wreck and feeling very sorry for myself. I had a significant other at the time, who had been a good friend for years before we had started dating. We'd started dating shortly before I lost my observer job.
It was at that point that I realized I could not continue with my career goals, because it would take too long for me to recover enough to feel secure with a job that required either field or laboratory work. I also realized that I could not go to graduate school at that point(which I'd been contemplating around when I took the observer job), because of fatigue and my episodes. So I gave up for a while, and lay in bed and felt sorry for myself. That November(2 months later) my father died very suddenly in an accident. My condition worsened to nearly constant twitching, I was depressed(despite the antidepressants and mood stabalizers they still had me on). My boyfriend really pulled through at that point, as he had lost his father to suicide 5 years earlier. I got myself on unemployment, used the department of vocational rehabilitation to retrain myself how to work with Geographic Information Systems(computer work with mapping and connecting data with spatial information) - painfully slowly at first. I was writing down any time I had an episode - which was now every 20 minutes or so if I did anything more strenuous than lie in bed, and seeing doctors, figuring out how to get myself places, since I could only use public transportation. The relationship with my boyfriend got painfully worse(among other things he kept telling me I couldn't have a career in GIS because I didn't have the computer skills), and in March he dumped me. That was the first time I cried since my father had died. I was very out of touch with my emotions, at least positive ones, and while my symptoms were slowly changing, it just felt like I was going nowhere.
My roommate moved out on me at the end of the summer, and had stopped speaking to me several months earlier. I was almost completely socially isolated, and still having bladder problems, muscle jerks, and my mother was so involved in her grief over dad that she pretty much just left me alone. My therapist was my main social outlet.
Now, about two years later, I've been hospitalized once(the muscle jerks got so severe that I was slamming my chest into my legs so hard that I was afraid that I had broken or otherwise damaged my breastbone), which led to the change in therapists and my neurologist taking over my medication management - that was this past February. My body no longer stops moving when there's something in front of me, so I constantly have to worry about slamming my head or arms into things. My bladder calmed down for about 3 months, and then in November at the anniversary of my father's death, when my insurance was about to run out, I foudn out the internship I'd been working wouldn't be able to pay me, and that the only insurance I could get(medicaid) I was only eligible for if I was employed, which I now wasn't. I was driving again at that time, but that was also when I started hitting things(first clue was when I slammed my head into a computer desk), so I had to discontinue the driving again. I now haven't driven in a year, but have gotten pretty efficient with public transportation. My bladder is still mostly uncontrollable, so I'm forced to wear poise pads, and I know where every bathroom is on all the routes I normally travel. I still have episodes of muscle jerks, pretty much whenever I see a ladder or an ambulance(my father fell from a ladder, and my mom tells a very vivid story about her ride in the ambulance with my father's body), or when more sensitive if I hear such things mentioned. I've found that my muscle jerks are normally associated with some form of stress - but that can be anything from social(first dates, meeting new people, being crowded on bus, train, or subway) to physical(summertime going from outside heat to air conditioning sets me off every time), to work-related(giving a presentation - only before and afterwards, never during...focusing on one task for a prolonged period of time), to emotional(anytime I should feel upset/angry/scared/happy - anything strong, I twitch instead). I've also found that fatigue makes everything much much worse, and that I tend to need about 10 or more hours of sleep a night. The muscle jerks take a huge amount of energy, so I also can eat like a horse(I'm rather petite).
At this point, I've started my own business(I can't take on a full time job because I'm spending about 15 hours or so a week on treating the conversion disorder, and I need to sleep a lot), am living with my fiance(who has his own set of issues to deal with, but is incredibly physically and emotionally supportive of me, which is what I need now), we're pretty much backs to the wall financially, but otherwise the relationship's good. I've discovered that attempts at sex are very painful for me, and the best information I've gotten on that is that many emotional disorders can cause some sort of sexual dysfunction. Normally my muscle jerks are down to occuring at relatively irregular intervals, and there are some people who have met and talked to me who don't know I'm dealing with an illness at all. Most do though. I've only really been able to make it through by having at least one or two supportive people around me most of the time. That, and I know that there's no point in giving up because this isn't going to kill me, and if I don't try to get over it, my symptoms will get worse and I'll just have to start over again. I am getting very frustrated at this point because its just hard for the friends I do have to empathize with what I'm going through - physically and emotionally, and I'd like to be able to have something to talk about besides my illness and my career, but I'm constantly feeling the need to get out statements about those things, since they, and my fiance are the focus of my life now.
I had a pregnancy scare, and have discovered that the clonozopam that I am taking would cause severe problems to a fetus if I got pregnant. The antidepressants aren't really a problem in that regard, but I'm not sure what the sleeping pills would do(I've been taking sleeping pills for about 2 years now, in part because in order to seem to live a normalish life I have to go to bed much earlier than I would get tired, and in part because I have bouts of insomnia when under stress or when alone). Thinking about this has set me off emotionally, which has prevented me from sleeping(despite the sleeping pills), and has run me down enough that I got a cold(another stress that makes my symptoms severe), and so I have been relatively miserable, tired, and bearly functioning for the past few weeks. Anybody reading this, I'd love some words of support, or sympathy. I know my symptoms are unusual even for this oh so unusal illness, and I guess in a lot of ways I'm lucky, since I can usually find a workaround for my issues. But the consistency of them is really wearing me down now, and I'm just hoping to be able to find some help in blundering through this all and actually managing to RECOVER. I suppose I should be happy that now I'm actually able to go on long crying jags and get angry and such, but its all so exhausting that I'm having a hard time seeing the forest for the trees.

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Postby muppet » Sat Dec 09, 2006 8:01 pm

Hi Alison.

I haven't been on this site for a long time and received a reply to one of mine so catching up really.

I went through sexual abuse as a child, and then a bad physical/mental/emotional relationship for a few years in my early 20's (I'm 39 now).

I have had CD for 2 years now. My main symptoms are balance and walking, memory and co-ordination. I was in a good job at Fonterra on a temp contract and they kept me for 16 months (when original contract was 3 months) so I couldn't fault them there, but my time just ran out. I couldn't get into the building I was supposed to work in so that put a dampener on things majorly I think. I was unemployed for 3 months then got another job (which they hired me in my wheelchair). It is amazing how many places are not wheelchair friendly. 4 weeks later I had my 3rd "attack" and this set me back badly. My hubby had to feed me, dress me, tell me everyday I couldn't get out of my chair and walk, not go to work, not drive. I have driven twice since then (June 2006). The first time we came to a stop sign and when I thought my foot was on the brake I hadn't actually moved it off the accelerator, so pushing down of course nearly overshot the stop sign. The 2nd time I drove was better but it was just open road, not stop signs in sight. But I'm scared to drive in case I have another relapse (I've had 4 all up in 2 years). Hubby is very good, he has gone back to work now. I can get around the house myself but am limited to chores etc I can do. My maths has gone away with the fairies. I am doing a book for 9-12 years old and can't add or subtract even. I go to counselling once a fortnight. I have not been put on any CD medication. The neuro-psychologist I saw says in a year I may have to be put on anti-depressants (even though I have not been classed as depressed). I am the opposite - I laugh at everything (a nervous thing they say) but my physio says euphoria is a sign of depression as well. Neuro-psychologist says antidepressants is basically to affect the front of your mind which may help. No idea why they want to wait another year though. I was due to start a 3 month rehab programme to get me walking but then dislocated my knee so that has put that off for a month.

Hope things are going better for you (as better as can be). You aren't alone (like I thought I was when diagnosed with this) and I am so glad I found this site, but nobody had posted for a long time. It's good to see people still here (if that is appropriate to say).

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