Sunday, July 10, 2016

Background Part 2: How it all began

I want to tell you how my movement disorder began, but to tell you that I have to give a little more background from before that.  And I apologize in advance for how long this post is.  There is a lot of information contained in it and some of it has been festering in my head for a while.

I was diagnosed with depression in 2000 or 2001 as a senior in high school, but I had symptoms long before that.  I won't go into the gory details, but this information is somewhat relevant.  I started treatment at that time, but as a stubborn teenager I didn't enjoy taking the medication because of the side-effects and decided to stop.  I didn't get treatment again for a while (I honestly can't say how many years).  When I did get treatment again, I found a medication that worked on the first try with minimal side-effects.  I was on it for 6 years, but then it no longer worked for me.  My doctor tried increasing my dose and decreasing my dose, but since she was a family doctor there wasn't much more she could do.  I was already seeing one of her colleagues, Dr. X, for sleep medicine since I have sleep apnea and at that time a sleep/wake disorder called idiopathic hypersomnia.  (The name literally means "I don't know why you're tired all the time" and it is closely related to narcolepsy.  Narcolepsy could not be ruled out at the time because I was on the antidepressant.)  Dr. X also has special training in psychiatry.  He had me try a couple of medications.  I honestly don't remember most of them, but they weren't helping my depression anyway.  One day in 2013 I made a glib remark to my boss about killing myself.  She told me later that day that she was seriously concerned about me and wanted me to get help.  She offered to take me to the ER and have me admitted for suicidal ideation.  After thinking about it for several hours, I told her I was OK with that.  I had thought seriously about killing myself at some point every day for a while prior to that day and I was afraid that I was going to have a moment of weakness and act on those thoughts.  I was admitted to the nearest hospital with psychiatric specialty, which is where I met Dr. S

Dr. S tried a completely different medication regimen with me and said that I didn't just have depression, I also had anxiety and borderline personality disorder.  I was out of there in three days, and saw Dr. X later that week.  All he said was that he wanted me to continue what Dr. S had me start and that he wanted to see me again in four weeks.  Dr. X was very difficult to get an appointment with, so when he said he wanted to see me again in four weeks, the soonest his scheduler could get me in was usually six weeks.  I decided that this arrangement wasn't working for me, especially given the current situation and his lack of action prior to my hospitalization, and called Dr. S's outpatient office to see if he would take me on as an outpatient.  He was willing and available.  I'm not sure how soon thereafter I first saw him.

After I had seen Dr. S a couple of times and had been on his medication regimen for a couple of months, I told him that I was having problems sitting still.  The worst time was when I was in bed at night.  It felt like I couldn't get my legs comfortable.  He said it could be restless leg syndrome (RLS) or extrapyramidal symptoms (EPS).  He gave me a prescription for a medication (a beta blocker, usually taken for high blood pressure) and said that if it helped it was EPS and if it didn't it was probably RLS and I'd have to see my sleep specialist.  The beta blocker did help, so the problem was considered "solved" as long as I kept taking the beta blocker.

The depression continued to be pretty heavy.  Medication doses were increased and other medications were added.  I was admitted to the psychiatric unit a second time because the suicidal ideation was not getting any better.  That was when Dr. S recommended electroconvulsive therapy (ECT, or "shock treatment" as it is colloquially called).  Since I was desperate, I agreed to do it.  After five or six sessions I didn't want to do ECT any more for various reasons.  A little while after I stopped, I noticed that I wasn't thinking of a new way to kill myself every day.  I was still depressed, but not suicidal.  That was a step in the right direction.  I decided to keep going with Dr. S's medication regimen because it seemed that he knew what he was doing.

About a year after starting the medication, I had a new complaint.  When I laid down and closed my eyes, my head would move.  Initially it was just like I was snuggling into the pillow and was pretty controllable, but it got to the point where it wasn't controllable.  You know how it feels when you just can't get your head comfortable on the pillow, so you wiggle it around until you do?  That's what my head did from the time I closed my eyes until I fell asleep.  If I tried to control it, I wouldn't be able to sleep because I was contracting my muscles and straining so much.  If I let it happen, I wouldn't be able to sleep because I was still moving.  And then I would get anxious because I couldn't get to sleep, but that would just make my head move more.  Now I will say that the "wouldn't be able to sleep" part is an exaggeration.  I did get to sleep eventually most nights.  I told Dr. S about it, calling it "restless head" since it felt a lot like the EPS I had in my legs that was similar to RLS.  He didn't do anything about it for the first couple of months that I told him about it.  Finally he tried giving me mild sedatives.  I think I tried two or three mild sedatives before he started giving me "sleeping pills" (hypnotic sedatives).  I actually stayed on one of the mild sedatives for a while because it was a close relative to Benadryl and made my allergies tolerable.  Nothing had any effect on my "restless head" at the time, and everything made me sleepy the next day.  If I took the "sleeping pills," too low of a dose had no effect on helping me get to sleep, and a "therapeutic" dose made it next to impossible to wake up in the morning and then I felt in a fog all day.  I was seeing a different sleep specialist at the time, someone my family doctor insisted I switch to, who was also in her practice.  When I told him about my problems with not being able to get to sleep and not being able to wake up, he diagnosed me with delayed sleep phase syndrome (DSPS) and told me that he wanted me off of some of my psychiatric medications.  He never offered or asked to call Dr. S.  I talked to Dr. S about it and he and I agreed that what we were doing was working better than nothing at all and that a change in my medication regimen was not a good idea at that time.  I went back to the sleep doctor and told him that, but he said again that I need to get off of my psychiatric medications.  I decided I would see a different sleep doctor.  The last time I saw that sleep doctor was early March 2015.  Since he was within the same practice as Dr. W, if I switched to this new guy, I couldn't switch back to Dr. W.  At the time, it sounded like switching to the new guy was not optional.  Now I wish I had stood up for my rights and stayed with Dr. W.  I later found out that Dr. W is one of the only two doctors in central Indiana (maybe all of Indiana) with dual certification in sleep medicine and psychiatry.

Three months later, I had an appointment with a neurologist who "specializes in sleep disorders" (according to her group's website) who came highly recommended from a few friends with narcolepsy, Dr. C.  I told her all the problems I was having, including the "restless head" and subsequent insomnia, and she said that she had a few ideas of what to do but needed to speak with Dr. S first since she wasn't totally familiar with my psychiatric medications.  I was OK with that.  I was scheduled for a follow-up appointment 8 weeks later.  In that time, I had called her office a few times (OK, maybe once or twice a week) to see if she was able to talk to Dr. S and let her know that his schedule is kind of wonky.  He would be in the office for two weeks, but only work in the afternoons in the office (the other half of the day he was at the inpatient unit at the hospital), then the other two weeks he was out of the office completely.  When he was out of the office completely, he didn't check his voicemail, none of his associates took care of his patients, and there was no way for a patient or a doctor to contact him.  I assume he was working somewhere else those two weeks.  I was scheduled to see Dr. S again a couple of weeks before I was schedule to see Dr. C (I think it was late June 2015), but my appointment was cancelled about a week in advance and between his schedule and an insurance issue I had to deal with they wouldn't be able to get me in again until mid-September 2015.  Here's the rub: the office knew at the time that they scheduled my appointment that Dr. S had requested to be on vacation that week, one of his 2 weeks out of the month that he would be in the office.  I had called Dr. S's office several times before my next appointment with Dr. C to tell him that I wasn't able to sleep hardly at all and that I really needed him to either call me or call Dr. C and talk about what to do.  I even said that on the nights I couldn't sleep, especially when there were consecutive nights, I was having suicidal thoughts.  I did not hear back from him.  I finally saw Dr. C's nurse practitioner on my scheduled date.  Nothing had been done regarding my "restless head" or insomnia, so I didn't see a reason to go, but I did go.  At my initial appointment, I had said that I had "dizzy flashes."  I was told that I had vertigo and needed to be tested for it.  That test was finally scheduled after my second appointment (the one with the nurse practitioner) since there was nothing else that could be done about my sleep at that time anyway.  I did have the test and I was diagnosed with unilateral (right) vestibular hypofunction, which just means the balance mechanism in my right ear isn't working as well as the balance mechanism in my left ear (actually it's at 49%) and that was throwing me off balance even when I was sitting still.  I had an MRI to determine if it was due to an infection.  Nothing was determined about my dizziness, but they did find that I have a calcium deposit in my left frontal lobe and said it was most likely due to an old head injury or maybe even just bumping my head really hard.  According to my mom and dad, I never had a head injury as a child and know I haven't had one as long as I can remember.  We will revisit this.  By the way, the "dizzy flashes" went away on their own as my brain learned to adapt to the imbalance.  I have not had a single "dizzy flash" since shortly after that MRI.

I ended up scheduling an appointment with a new psychiatrist, Dr. M, at an office recommended by my therapist for early August 2015.  The night before I went in to see him, I had 5 hours of sleep.  That was considered a "good" night at that time, but I was still a nervous wreck the next day.  When I went in to see him, I was able to hold myself together for about 30 seconds.  Then I was crying inconsolably.  I told him that part of the reason I couldn't sleep was because of anxiety.  He was hesitant to give me anything for anxiety because of my sleep apnea (medications specifically for anxiety can slow the respiratory rate in a regular person; in a person with sleep apnea, it not only could slow my respiratory rate, it could also reduce the signal to my brain to take a breath since that system is already malfunctioning and I could go without breathing long enough to suffocate in my sleep).  He finally ended up calling Dr. C right in front of me to discuss with her what he could give me.  He said he talked with her directly and one of the things she said was "I am not a sleep disorders specialist."  I was put on a trial dose of a medication that is usually given for seizure disorders and nerve pain but has a nasty side-effect of fatigue.  I was to try it in a taper up fashion, meaning that if one 300mg pill every night didn't work after one week I was to try two.  If that still didn't work after another week I was to try three, but I wasn't supposed to go any higher than three pills in one night and I was only supposed to take it at bedtime.  I did as I was instructed.  And the medication did nothing for my sleep.  I was not even groggy the next day.  I stopped taking it.  I forgot to mention that during the time I was under Dr. C's care I started developing what I could only call "restless hands."  For the most part it started like the "restless head."  The movements were somewhat controllable, but there were times I couldn't control it.  In the beginning, if I had to do manual cervical (neck) traction on someone, my fingers would wiggle.  It was almost like I was trying to add a little massage to the grip.  A little while after I started seeing Dr. M, he said something about the "restless head" and "restless hands" being called "akathisia."  I found out that it is a specific EPS and that it was most likely caused by the antipsychotic I was on.  Dr. M started lowering the dose since I was still on all of the medications and dosages that Dr. S had prescribed including maximum dose of the antipsychotic.  I eventually told him that I would like to get off the medication altogether.  I took my final dose in early December 2015 after being on it for about two and a half years.  This is a medication that, when used in short-term situations (about eight weeks) doesn't usually have many significant side-effects, but long-term use is known to have higher incidence of side-effects.  I later found out that "best practice" for this medication is to taper off, discontinue, and find another antipsychotic as soon as movement problems arise.  I was told when I started the medication that, since it was a second-generation (atypical) antipsychotic (SGA), movement disorders were not as common with it as they were with first-generation (typical) antipsychotics (FGAs).  I have since found at least one article that says that the incidence of movement disorders with SGAs is approximately the same as it is with FGAs in long-term studies.

Because Dr. C said she was "not a sleep disorders specialist," I decided to find someone who was.  I asked my narcolepsy group for input again and they suggested someone from another medical group.  I had an appointment to see her in late October 2015.  When I finally saw her I told her about the "restless head" (which had pretty much gone away by that time since the antipsychotic dose was decreased) and "restless hands."  She postulated that it could be due to anemia, since that can cause RLS and there's no reason why it couldn't cause RLS-like symptoms elsewhere in the body, and had me do some blood work.  When I was in the office I was too anxious to tell her that anxiety was part of the reason why I couldn't sleep and that I needed her to talk to Dr. M about putting me on something for anxiety.  Fortunately I was able to email her after I got home.  Dr. M finally wrote a prescription for something for anxiety.  And it turned out that one of my blood iron values, the one that says how much stored iron I have in my body, was ridiculously low.  Everything else was either within normal limits or just a touch low.  So I started taking iron.  None of the "restlessness" was getting any better, though, and one of my signs was causing another problem.  If I wasn't thinking about them, either when sitting quietly or when using them, my wrists would flex significantly.  I started having tingling in my thumb and first two fingers on my right hand and occasional tingling in the same places on my left hand.  I went to my family doctor.  She had me do an in-office test that indicated that I had carpal tunnel.  At first it was mostly in my right hand, but then it went to my left hand.  After I saw her the second time three weeks later, after braces and anti-inflammatories didn't make a difference, she ordered an electromyogram (EMG) of my arms, which tests how fast signal conduction is from the shoulder to the fingertips along certain nerves.  Based on the conduction speed indicated by the test, it turns out that the carpal tunnel in my left hand was "moderately severe" while the carpal tunnel in my right hand was "mildly severe."  I also was discovered to have cubital tunnel in both elbows, but it wasn't enough of an issue to concern my family doctor, especially since I wasn't reporting symptoms.  She recommended that I see a hand surgeon, but I insisted that there was no point to surgery.  If I'm continuing to do the behavior that causes the problem (flexing my wrists) and have no control over it, I see no point to fixing the carpal tunnel, which I see as just a symptom of the problem.  I eventually told her that I would like to see a neurologist to work on the cause of the problem.  I was very reluctant to schedule the first appointment after what I had gone through with Dr. C, but the neurologist who did my EMG seemed like a nice guy, so I wanted to give him a chance.

Since I wasn't working at the time, I saw Dr. W for the EMG the day after my family doctor wrote the referral, but because I was working at the time that I decided to see him for a neurology consult it was three weeks between when the referral was written and when our schedules lined up.  When I finally saw him, I had a hard time explaining the problem to him because doctors make me anxious and after my negative experience with Dr. C I am most anxious around sleep doctors and neurologists.  And at that time I hadn't figured out the term "movement disorder" to explain what was happening.  He agreed that I need to see a hand surgeon, but wasn't entirely sure what to do otherwise.  He prescribed some medication to help with the tingling, which by that time had become painful and is best described by the word "neuropathy" (literally meaning nerve pain).  He said that should help with the uncontrollable movements, too.  It was the same medication that Dr. M put me on to help me sleep that had no effect on me.  Dr. W also said he would do a little research.  Finally, I showed him my MRI report and asked him if the scarring in my brain could be from ECT.  He said that it is possible that I had a minor brain hemorrhage that healed and scarred, but he couldn't say definitively.  I saw him again four weeks later and had no significant improvement.  I had actually declined a little and was better able to describe the problem.  One of the things I described to him was that my left wrist flexes whenever I try to exert a lot of control over it, like when putting tape on a patient or writing.  He actually listened to me and treated me like a partner in my care team instead of an idiot, which is the way I feel doctors treat me in spite of knowing my job title (physical therapist assistant) which is always in the paperwork and I declare in their office when I try to help them solve the problem (a.k.a. tell them my self-diagnosis).  He also admitted that he wasn't entirely sure what was going on.  He thought that it might be a form of dystonia (another EPS).  I told him I would think about it and get back to him, and he said he'd see me again in four weeks.

At that four week follow-up, things were still pretty much the same.  I asked him what he thought about me seeing someone who specializes in dystonia in another practice and he said that he would be OK with that since it wasn't in his wheelhouse.  He asked if I would be willing to see one of his associates, one who knows more about the Botox injections that are standard practice for dystonia.  I was very unhappy to leave this doctor who I had initially feared but grown to like a lot, but agreed to see his associate for a Botox consult.  At the time, I was pretty sure Botox wouldn't do anything for me anyway since my problem wasn't a fixed muscle spasm, but a problem with controlling movement that presented as a "functional" spasm.  When I scheduled the appointment to see the other doctor in his practice, I let the office assistant know that I was very anxious about switching doctors and she reassured me that the other doctor was very nice.  I saw him, and he said it didn't look like anything that could be helped with Botox to him, and said at least three times in my 15 minute visit with him that I MUST have carpal tunnel surgery.  I was incredibly upset when I left my appointment with him.  I was crying so hard that the office assistant knew my visit went very poorly.  That doctor told me to follow up with Dr. W, and so I did as soon as possible.  He and I discussed the pros and cons of doing carpal tunnel surgery and that if I didn't do it and ended up getting worse I could be crippled for life.  I told him that I feel like I already am with the movement disorder.  He said that since we don't even know what the movement disorder is there is a chance it could get better.  I told him that I had been doing some research and that he might as well just slap me with a diagnosis of "tardive dyskinesia" because it's definitely a dyskinesia (which is another specific EPS) and I was on an antipsychotic for over 2 years.  Dr. W said that he did not want to saddle me with that diagnosis because there is no treatment for it and he doesn't want to give up hope.  He also said that I didn't have enough facial tics for it.  He admitted that he had only seen tardive dyskinesia (TD) once when he was in med school, and that the person he saw could hardly control their face.

According to the National Institute of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health (NIH), Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs. Neuroleptic drugs are generally prescribed for psychiatric disorders, as well as for some gastrointestinal and neurological disorders. Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Involuntary movements of the fingers may be present.  (  It does not say facial tics are mandatory.  They are considered "normal presentation," but they are not mandatory.  I actually told a few people about his comment.  One person had just graduated from a nurse practitioner program, and when I told her that he said that I don't have enough facial tics she said "like blinking a lot?  Because you do."  I told someone else whose sister has TD and she said "you are pressing your lips together almost constantly."  I realized that Dr. W did not look at me a whole lot when I wasn't talking.  Just like with my hands, my presentation varies based on what I'm doing, how severe my anxiety is, and whether or not it's a "good" day.  I'm not sure how my brain determines what is a "good" day and what is a "bad" day, but consistently Wednesday and/or Thursday are my best days and Monday is one of my worst days, regardless of what I do, employed or unemployed.  I told Dr. W about that at one of the first visits and he said it was totally weird and didn't help him with figuring out the diagnosis.

I am seeing a new neurologist at the beginning of August.  When I originally contacted the medical group that this neurologist is in, I told them that I need to see a movement disorders specialist and asked for the one they had listed on their website.  They said that the person listed on their website is not available but they have someone else available.  They told me his name, and I have looked for him on the medical group's website multiple times and cannot find him.  His name is two first names that are super generic in the US, so just doing a Google search for his name with MD after it yields a lot of results, none of which are those two names combined into one from this medical group or even within my state.  I am afraid that when I get there I will be seeing a "generalist" neurologist, like Dr. W, who will say "I'm not sure what to do," or even worse try to "fix" me based off the symptoms they see and not the root of the problem.  Fortunately and unfortunately, the only movement disorders specialists in my city are in this group.  I really want them to send me for some sort of a functional evaluation.  Something where someone (preferably an occupational therapist) watches me do everyday things like writing, typing, using a mouse, eating, cooking, etc.  And since the cause of the cause of my vertigo was never determined, I want to find out if that could be connected.  But having high expectations with Dr. C is what got me into the most trouble.

I know I haven't talked a whole lot about my full symptom presentation yet.  I actually plan on making that my next post.  I already have a lot of it written out from when I was trying to figure out what to call the stinking thing, all the way back to before when I recognized to call it a "movement disorder."  I just have to update it to include the current symptom presentations.

I want to leave you with a little bit of running wisdom that I came up with that I thought was totally profound and should win me a Nobel Prize (OK, not really).  It was in response to a post from a magazine talking about using running as a defense against depression.  Here goes:
When my demons are threatening to overtake me, I lace up my shoes and try to outrun them. Sometimes I cry on the way to the park. Sometimes my emotions interfere with my ability to push myself to run and I end up walking instead. Sometimes my short, fast workout turns into a long, slow workout. And 90% of the time the demons don't follow me home.

Much love,
Twitchy Tina

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