I no longer feel groggy, headachy, drugged, wobbly, and flu-like upon waking

The above problem I’ve been dealing with consistently for a year and a half.  It got to the point where my choices really sucked: be tired, or respond to fatigue by napping and then be permanently groggy and wobbly on my feet for the remainder of the day.

I am off Trileptal and no longer experience ataxia, which is what the wobbliness was. It is completely gone.

I have had bad headaches since the fall, probably due to many factors, including dehydration, poor nutrition, altered vital signs from Imipramine, agitation and tension from Imipramine, and of late, my thyroid being off.

I have had hypothyroidism for a long time and I don’t talk about it because I always thought it was a non-issue.  You get your blood tested, and if your thyroid is too low or too high, the doc adjusts the medication and if you felt bad, you’ll probably get some relief.

My thyroid was off this spring.  My new doctor said once the thyroid level is correct, I would see improvements all over, such as reduction in headaches, less trouble fighting off dehydration, and reduction in edema.

I wish the edema bit had come true.  Unfortunately, the edema is worse than ever.  I can make a noticeable dent when I press anywhere on my legs, not just on my ankes.

I think the thyroid fix was what really helped the recent headaches and flu-like feeling.  I also feel better in my overall mood.

Another thought: didn’t the headaches start to get a lot worse around the time I got my flu shot?  This was also when I started Imipramine.

I napped for a long time.  I just woke up and I don’t feel wicked sick.  That’s pretty much a first.

One big goal for this afternoon is to take care of those overdue library books….

Please don't ask me to rate the quality of my day on a scale of one to ten

More often than not, I feel kinda embarrassed or even ashamed mentioning “progress” I’ve made with my mental health.  This is not usually because I’m afraid to speak too soon.  Sometimes, though, I’m afraid my “progress” will be stolen from me.  What I mean is that it will be denied or made trivial.  I’ll mention an example of progress robbery and you’ll see exactly what I mean in a flash.  In brief:  I was 26 and wicked discouraged an no way did I expect help right at that moment.  No one listened, no one cared, and no one that was treating me knew anything about eating disorders or cared that I had one, so I’d long since stopped talking about it, and given up.  I had no faith in the doctor.  He decided to give me Lithium.  I took it.  Right away, my eating disorder improved.  Nothing I had tried even compared to how much this pill helped me.  I said to the doctor, “This Lithium has helped me very much.  It feels like a miracle.”  He said, “This is not true.  Lithium doesn’t work that fast.  You couldn’t possibly be better.  What eating disorder?”

So theft is one reason I hesitate to reveal progress.  I have had progress denied and stolen from me many times.  Folks don’t see the change in me even though I feel it deep inside me and know it’s there, or they claim it’s not possible.  Well, it’s my body.  What I feel is what I feel.  You don’t feel what I feel.  What in fact isn’t possible, Doctor, is for one person to feel another person’s feelings.

The other reason I hesitate to mention progress is due to embarrassment.  This goes way, way back, probably deep back to early childhood.  Oh, I could probably go on and on about progress with toilet training and go into making poops and getting praised up and down for my so-called progress with body function, maybe write an entire essay on that alone.  But I won’t.

I think I will indeed focus on my parents, though, but at a much later time in my life.  I’m talking about a time when they were overly involved in my mental health care.  I would say that it went so overboard that they were privy to unlimited information about my case from my psychiatrist and therapist.  At any time, they could call these people and discuss my general welfare in detail with these people.  Not only that, but these people shared stuff with my parents that they never shared with me, stuff about future plans for my care, for instance.  My parents could ask any question they wanted and they’d get an answer.  In this sense, my treaters and parents together considered me a child who didn’t have any capability or responsibility when it came to my own care, or need or desire for knowledge.

So you get the picture.  Little Julie with a room full of big adults.  The playing field.  The doctor asks, “Julie, can you tell us how you are feeling?”  My parents on the edge of their seats, ready with their pom-poms and confetti.  I wait a minute.  I take a breath.  I say, “I think I’m feeling…I’m feeling…I think I feel good today.”  My parents jump for joy.  My mom waves her arms and cheers.  “Yay Julie!  Rah rah Julie!”  And then the parade starts.  Posters are erected for Julie.  “Look at Julie!  We’re so proud of you!  Rah rah!  Let’s all go out and get some slurpies and stuffed animals!  Everyone, come and see big Julie, all better!  She is the star of the show!”

So you can imagine.

Okay, so say my response is that I feel bad today.  Here’s what they say in response.  Their faces fall.  They droop.  They say, “Aww.  You lost.   Let ‘s kiss your boo-boos and make them all better.”  Certainly no raised arms.  No parade.  And to the doctor, “What’s wrong?  Give her more pills!”

So this was my cheerleading team, for years.  Yes, they rubbed it in.   They rubbed their own noses in it, saw it so up close that they saw nothing else, and nothing else mattered.   They were short-sighted.  They were unwise, and they were fools.  I was unwise as well to let all this continue for as long as it did.  What I wanted to tell them was, “Hey, ‘This too shall pass.'”  I saw as well as any of them there that not only did life have its ups and downs, but that life was more complicated than just having a bad day or a good day.

Finally, I pulled the confidentiality card, and stopped allowing my parents to participate in any way in my care.  For many years, I continued to argue fruitlessly that to rate my “mood” on a scale of one to ten, as doctors and other mental health practitioners often insist, is trivializing “mood” to the extreme.  The same goes for rating how my day went.  How can I put a number to something that is qualitative and not quantitative?  How can I put a number to something that has many, many dimensions?  This is like rah rah.  This is trivializing. This is like reducing to “good” or “bad.”  This is saying whether I won or not when I didn’t win or lose this day.  I breathed this day.  I might have felt like a winner or felt like a loser, but that’s only one of the many, many thoughts and feelings that I have had when all is said and done.

So I hesitate to mention any progress.  But right here right now on April 10, 2012, I do feel progress is happening.  I am fifty-four years old and I have spoken about some of this progress and repeated some of it over and over and over.  Some of it I haven’t mentioned out of embarrassment, fearing rah rah, fearing that someone (real or imagined) will pounce on it and steal it.

When I was in the hospital, I used to write stuff down, and I’d have these meetings with the doctors and bring my writings with me.  Nine times out of ten…well, no…just about always, no matter how much or how little I’d written, they’d sit there and say, “Say it in your own words,” or they’d say, “How about summarizing.”

I have a couple of things to say.

These are my words, first of all.

Secondly, this thing that I have written is a summary.  That’s why I wrote it in the first place.

But before I even had a chance to say that much, most of them had already sized me up.  They hadn’t even read my chart.  But they’d flipped open a page, written their orders, and said they had no more time for me.  Case closed.

Now and then, I’d walk into these meetings with something written in list form.  A tiny piece of paper gets a more positive response, and I’m more likely to get more of their time, maybe even more of their attention.  Sometimes, I wrote progress lists.

Here is my progress list for April 10, 2012:

I am forging my own path in regards to my care.
I have rejected “traditional care.”
I have rejected inpatient eating disorders treatment.
I have rejected tried and rejected the one “eating disorders” partial program that I tried.
No residential care takes “public assistance” insurance (Medicare, Medicaid) and I have rejected these forms of treatment.
I choose to stop therapy.
I have chosen to taper off as many psychotropic poisons as I can.  I started this process and have done well.
I chose to stop DMH services.
I chose to end “weekly weight checks” and cease weight-centered eating disorders treatment.
I chose not to follow a traditional “meal plan.”

Without hesitation or doubt, I know that the above decisions were and continue to be the right path and my true destination.

Where am I headed?  I am forging my own path now.
No one tells me what to do.
This means I make mistakes.
When you are doing “traditional care” with a “team approach,” mistakes get made, too.
The difference now is that I am the one making the mistakes.
I and I alone am responsible for the mistakes I make.
I own them.
I forgive myself, pick myself up, and move on.
Sometimes, it takes a bit to get going again.

Here are some very concrete examples.  I will try not to get too embarrassed over this.
I have experimented some with my medications.
And if you are bored with this gibberish, skip this paragraph
And go on to the next one, okay?
Lowered my Trileptal.  That didn’t work out too well, so I put it back up again.
But I seem okay on half the Lamictal I was taking.  Better, in fact.
Naturally, it’s all experimentation.
Of course I do shitloads and shitloads of reading and re-reading of
drug inserts and interactions and titrations and stuff I read all over the place about side effects
and potentiation (which means when one drug makes another drug more effective than it normally is)
and weird things that happen when you get off a drug
that the drug companies hid from the public.
What’s most important is what happens to me
How I react.  How I benefit or don’t benefit or react badly to a drug.
Lamictal kept me awake at night and gave me double vision.
I used to take 600 a day.  It says clearly on the insert that is included with the original bottle
That for “bipolar,” doses above 200 produce no further effect
While in certain research, higher doses are claimed to have effect…hmm….
I have lowered my dose from 600 to 100.  I feel much better, can sleep finally,
And finally, finally, when I look at Puzzle, I am less puzzled,
Because I see my one dog, and not two.
I can’t afford twice the vet bills.
I am off my antidepressant because it stopped antidepressing
And stopped stopping my bingeing.
I’m hoping that my vital signs will normalize.
I’m hoping that my breasts will return to normal size
And in so doing, maybe I’ll get some relief from body dysmorphia
Which I think is caused by increased breast size from galactorrhea
(this time I think I have it spelled right)
Which is increased milk production, a side effect of the antidepressant.
And I am also successfully reducing my Topamax.
It, too, has pooped out.
As used to prevent bingeing, it doesn’t work for years and years, typically, I’ve read.
For whatever reason, Trileptal seems to help me
So I’ll stay on it.
Enough about meds.

And here’s a bit about food:
I played around with what types of food I ate
What types of food I purchased
What types of food I could afford
I made decisions based on food price
I made decisions based on nutritional value
I made decisions based on how long I could store a food
Where I stored that food
How I stored that food
What quantities I would have to purchase
Whether it contained sugar
What form of sugar
I asked myself how much sugar I wanted to consume
I asked myself about how different foods made me feel
Both physically and emotionally
Whether a food made me feel satisfied
Whether a food tasted good
I thought about flavor
What went with what
I thought about what foods felt scary to me
For any reason.
I knew that I didn’t have to justify to any other person
Why these foods felt scary.
I noticed that when something was labeled “natural”
This word, “natural” was pretty much meaningless.
I want to buy food that I can bring home on the bus
Or carry on my back in a knapsack.
I asked whether a food contained a whole ton of salt
I asked myself about processed foods
I decided that diet soda was a waste of food stamps
Which really I already knew
I no longer buy coffee at coffee shops, ever
My own is better
I noticed that processed foods were more expensive
I noticed that foods that were made already
Were much more expensive
Than if I bought the ingredients and put them together myself
I considered the risk of ending up bingeing on that food
I made decisions based on what would make me fat
How many calories were in it
Yes, I admit this.

I found myself suddenly very, very broke
And go to food pantries now
I have learned a lot about food pantries
Through experience.
It takes practice.
I want to write about the unique experience
What it’s like to have an eating disorder
And experience a food pantry.
I have learned what to choose in canned food.
And what not to choose.

Yes, I still binge.
This has changed drastically.
I no longer spend…how much of a bill was I running up?
It is unthinkable.
We’re talking cash.  Well, no more.
I don’t do sugar binges anymore.  This is amazing.
Don’t ask me how I made this change.  I do have a credit card and I very well could use it,
But I don’t.
I don’t run out and buy cake or ice cream or candy or peanut butter
I don’t eat a stick of butter by itself
No donuts or pastries or muffins or bakery stuff
No pretzels or chips
No cheese or cookies
Nothing delivered or from a restaurant of any kind

Why is this?
It is embarrassing and awkward buying this stuff.
I can’t afford it.
It’s damn embarrassing using my food stamps to pay for it.
It makes me feel very, very sick afterward.

So.
Oatmeal.
Pasta (not that “ramen” shit, which tastes like pure oil to me).
Canned soup on sale.
Canned veggies on sale.
Any quick-cooking, very inexpensive grain, whatever’s on sale.
Potatoes.
Yams.
Leftovers.
Canned pumpkin (I get a lot of coupons for it).
Fresh veggies (not expensive ones).

I have almost broken my tendency to dig into Puzzle’s food.
Almost.
I am just about dog-food free.

When you add it all up
And consider everything
I have spent time eating nothing at all for days.
I have spent time bingeing for several days in a row.
These two things are the same as before.
But what I binge on has changed,
So financially, I’m not dropping hundreds of dollars a month

And the other thing that has changed
And here I’m a little embarrassed to admit this
Is that I have spent a few days
Actually eating meals.
This is brand new.
No, not real big meals.
It’s kinda scary.
No, not freaking “meal plan”
An approach I did indeed try, over and over
And it never worked for me.
I am forging my own way.
I am experimenting.
Trying out.
Seeing for myself and my own body
What works and what doesn’t work.
I will continue what works and stop doing what doesn’t work.
“Meal plan” didn’t work.
I would rather do something that not only works
But is inexpensive, healthy, practical, and logical.

I see progress.
I see learning from mistakes.
I enjoy learning.
I am not embarrassed about learning.
I am proud to share the fact that I have learned new things with others.
I am proud to say that I have found things that have worked.
I am cautious about suggesting to anyone else to do what I am doing.
I encourage others, though, to look around, to keep an open mind
To listen
And to realize

Although my path may be a little bumpy
You can trip on any path, even one that is well-trodden.

I carry a flashlight.
I bring my dog with me.
I pick up after her.
I pick up
After myself.

So,

I have a couple more things to say, and then I’ll shut up.

These are my words, first of all.

Secondly, this thing that I have written is bit longer than a summary.

There is a place for summaries, and there are places where I can go on and on in as much detail as I want.

This is my blog, a place where I write whatever I want.  A place where no one tells me “time’s up,” and shoos me out of the office.

If you didn’t want to read this, you wouldn’t have gotten this far down.

And now that you’ve gotten here, it’s my turn to say, “Time’s up.”

You can get out of this blog entry now, and walk through the door.

My door is never, never locked.

 

I want to buy food that I can carry home on the bus
Or on my back in a knapsack.

 

 

 

What I will discuss with Dr. P today

I will be seeing Dr. P today.  Hopefully, she won’t spend the entire session lecturing me about my weight.  I think we have been over that a zillion times.  I will start the session by saying, “I have a list,” and hopefully this will start off the session without the lecture!

First of all, I will mention the vertigo I have been experiencing.  This is how I will present it to her:

When I wake up, I feel just okay.  I’ll tell you about that in a minute.  I shower and walk Puzzle.  Then, I feel fabulous.  My mood is really high.  I feel absolutely terrific.  I have a smile on my face.  I even feel good when I pick up the poops.  [I have more to say about this that I’m going to not say here–not about poops but about something else.]  Then, I come home and have the first morsel of food of the day.  Within ten minutes, I get vertigo.  Dr. K has confirmed that this is vertigo by the way I have described it to her.  I even feel dizzy while seated.

At this point, my mood rapidly drops.  Recently, the vertigo has started to become extremely distracting, and I have started to become mentally confused.  Fifty percent of me suspects that the vertigo is a sign of the return of “It,” given that so much of “It” was physical.  At this point, my day is ruined.  I can’t do anything for at least 2-1/2 hours, often more, waiting for the vertigo to end, and even after that, I feel crappy for hours, usually into the afternoon.  Every now and then, the vertigo has lasted all day.

Here’s what I want to say about the bingeing:

I have had maybe three bingeing episodes since I last saw you.  These happen two or three nights in a row, then I stop.  I’m not talking about two sandwiches.  I’m talking massive binges.  I do not throw up.  I repeat, I do not throw up. The binges have to do with self-destructiveness and sudden dip in mood.  As you know, I do not binge voluntarily.  They cause really bad edema.  I am extremely concerned about the health consequences of these bingeing episodes.  My list of physical consequences, in addition to the edema, is something I want to get into with Dr. K, but it’s serious, and I’ve got to stop.

Here’s what I’m going to confess about that Trileptal:

I cut back on the Trileptal back in April.  I halved it.  This immediately stopped the swaying.  I had to do this to enable me to run on the treadmill.  As you know, I have been diagnosed with arthritis in my right knee and have been advised to stop running and walking for fitness.  The treadmill is a thing of the past.  I chose to bring the Trileptal back to its original dose as of nine days ago.  The swaying returned.  A couple of things about the swaying that might interest you include the fact that if I don’t sleep well, the swaying is worse, and if I take a nap that’s too long and I’m groggy, the swaying is extreme.

She will ask, “How’s your eating?”

I will say, “Good and bad.”  Bad, actually.  “Mixed.”  Of course, my response means nothing.

I don’t know what she will say to that, except, “Your last weight wasn’t good.”

I will probably hang my head.  Not so much in shame but in hiding the fact that I am hiding the fact that I am hiding something.  Well, I am not hiding but leaving out the facts.  I am not ready to tell her.  I am not ready to tell any human all the details of my food problems.  Maybe, I will write them down and let it all spill out in this Notebook.

The session will end there.

As we speak, I am experiencing the vertigo I experience almost daily.  It’s pretty bad at the moment, and has been going on for about an hour and a half.  I am sitting here typing at the computer.  I am sitting here, discouraged.  As usual, except for Puzzle’s walk, it’s not a good morning.  I wish there were answers.  Maybe Dr. P will have some.

Vertigo resulting from anorexia nervosa and in addition to this "swaying" from ataxia side effect of Trileptal–both at the same time–oy!

Yesterday I ended up getting my usual vertigo about 10 minutes after my first morsel of food for the day.  This is always a glass of skim milk.  That’s all I generally have for breakfast, anyway.  From my research on the Internet, people with anorexia nervosa can get vertigo after eating.   Mine comes only after the first bite of the day, consistently 10 minutes later.   I think it’s from malnutrition.

The vertigo is bad, bad, bad.  I can’t really go out when I am experiencing it, not safely.  Everything kind of swirls around, or, more accurately, I get this intense wobbly-dizzy feeling totally unlike the “swaying” feeling that is more physical and not dizziness at all.  The vertigo comes from my head and is more of a feeling.  I experience it even when I’m sitting down.  I feel like I’m going to fall over.  I kind of stumble around and feel clumsy.  Yes, like It.  Also, the vertigo is extremely distracting.  I find it hard to concentrate on anything. It’s very disturbing to go through this.  It’s definitely nutritionally related.

The “swaying” is from ankle weakness.  This ataxia is a side effect of Trileptal.  It came back when I returned the Trileptal dose from 150 to 450 to the original dose of 600, which was what I was supposedly taking all along.  Dr. P never found out that I had halved it and then halved it again.  I will tell her what I did.  I will tell her I was a “good girl” and brought the dose back up again.  I need the Trileptal to prevent binge eating episodes.  I will tell her that I realized how stupid I was.  But I will also say that the “swaying” disturbed me, and that it made running on the treadmill impossible, and this was a damned good reason to lower the dose!  But due to the fact that I have now been diagnosed with arthritis and won’t be on the treadmill, I have decided to raise the Trileptal back up to the original dose. So now…ataxia…”swaying.”

Agreeably, the “swaying” isn’t really that bad.  It’s only a problem if I’m sleep-deprived.  But yesterday I awoke from a nap, really out of it, and the ataxia was bad, bad, bad.  And I still had the vertigo!  Now, the vertigo is 10 times worse than the “swaying,” yes, but the combination…that and being sleepy and groggy and weak from not enough food…well….It sucked.  I was completely non-functional.  You could say it was kind of a nightmare.  An anorexic nightmare.

You know, all I have to do is eat.  Get some food into me.  At my last weight check, my blood pressure was pretty low.  The systolic was okay, but the diastolic was something like 54.   This isn’t what’s causing the vertigo.   Vertigo is not the same as postural hypotension, which is a lowering of the blood pressure upon standing.  (Sometimes, postural hypotension can be caused by medication.  I used to get it from my meds.  It’s a very common side effect.)  If my nutritional status was okay, I wouldn’t get the vertigo and the host of medical problems I now have.

I don’t eat because I don’t want to gain weight.  Period.  I have anorexia nervosa and I am scared to gain weight.  I am sitting here at the library and I am scared to gain weight right here right now.  I am sitting here at the library weak and starving.  All I have to do is to go down to the cafe and buy a nice sandwich.  Oh, I’ll eat in a bit…lunch…vegetables mostly.  An hour later, I’ll be weak and starving again.  This is my life.

When will the insanity end?  Will I ever get so fed up with the medical problems that I experience–daily–to want the insanity to end at last?  Because all I have to do is to eat a decent amount of food and that will fix a lot of what I go through.

I really, really, really don’t know.

Vertigo somewhat improved…I am leaving shortly for therapy

I think I’m going to be okay to go.  The vertigo is finally fading.  I should be okay in a little while.  Yesterday, it lasted five hours.  Today, it seems to have been just as much of a trickster.

Meanwhile, I have a bit of ataxia from the Trileptal that I just raised to help with bingeing.  This causes “swaying” on my feet separate from the vertigo.  I also have some edema from the bingeing I did right before I raised the Trileptal.  I haven’t binged since the increase.  I had to lace up my shoes very loosely this morning.  That didn’t help my walking any.  But I was just now able to tighten them adequately.

This really sucks.

Two things don’t suck:  1) my knee injury is vastly improved.  I am off crutches completely.  They are back in my closet.  2)  I don’t feel depressed today.  Just wicked annoyed.

I’d like to close this entry with some kind of funny remark.  But right now, I don’t feel very amused by all this.

I am putting the Trileptal back to its original dose–Hello, Dr. P

I decided, after a horrendous three days of eating binges, to put the Trileptal back to its original dose.  According to my records, I sprained my ankle March 25th and subsequently lowered the dose April 8th without the blessing of my psychiatrist, Dr. P.  I never told her.  The main reason I lowered it was that I had a lot of trouble walking and running on the treadmill at the gym.  This of course was completely unacceptable to me.

One side effect of Trileptal is ataxia, weakening of the extremities, which includes the ankles and wrists.  The test for this is for the patient to stand with his/her feet together, hold his/her arms out in front, and close her/his eyes.  If she/he sways, she/he has ataxia.  It was obvious that I had this side effect.  I knew, knew, knew that it was from the Trileptal and not from my other medications, because it started when I started taking Trileptal.  After all, I was perfectly capable of using the treadmill before, wasn’t I?

However, I was given Trileptal to help with bingeing.  It worked.  When I lowered the Trileptal from 600 to 300 and the swaying stopped, I still promised myself that if the bingeing started up, I would think twice about having lowered it.  Bingeing Hell is not a place anyone wants to go.  Did I keep that promise I made to myself?  No!  I lowered the medication further a week ago.  I became miserable.

Last night, I put two and two together, that is…150 and 150, and 300 and 300 t0 make 600 together again.  I don’t want to muck around with my meds again.  After three days of utter Bingeing Hell, I have had enough.

Dr. P, I totally respect you.  Yes, you were wrong about the cause of the “swaying.”  But you were right that lowering the Trileptal did “destabilize” me.  I will go back.  I will go back to the security of the dose that you put me on, the dose that I left McLean at last winter, a therapeutic dose that works for me.

Now that I won’t be on the treadmill, what does it matter if I can use it properly or not?  What does it matter?  Really?  I know I can keep my balance on all the other machines at the gym just fine on 600 mgs Trileptal.  So what’s the big deal?  How can I function in my life if I’m living in Bingeing Hell?  If I’m bingeing, I won’t be at the gym anyway.  So there  you have it.

Today, I’m picking up the pieces.  Organizing my life.  Doing a bit of cleaning up around here and organizing my thoughts.  Just doing a lot of thinking and assessing my situation.  I woke up this morning not wishing I was dead, but determined to stop the bingeing and carry on with my life.  And that’s something.

It’s a start, anyway.

Update: News About Me

Last night I cut my dose of Trilptal in half, from 300 mgs each night to 150.  My doctor still doesn’t know that I cut it from 600 to 300 in March.  I cut it down further because of the return of the “swaying” a few days ago.  I plan to get off Trileptal in a few days, or maybe week.  I don’t see any point in taking 150 mgs, because that I know of, it is not a therapeutic dose.  I could be wrong about this.  Don’t take my word for it.  I feel okay about this because I am also on two other anticonvulsants, Lamictal and Topamax.  I take all these three medications for mood stabilization.  They also help me with bingeing (that is, an eating binge).  I found that the Trileptal lost its anti-binge properties after maybe six weeks after I started taking it, though initially it was quite effective.  Mood stabilizers are the only medication that help me with bingeing.

Right now, I am working on not bingeing by behavior techniques, and my special friend Frank has been very supportive and helpful to me.  We have hopes that I can stop bingeing, at least for a long, long time.  After I have not binged for 21 days, we are going to have a binge party!  We are going to binge together–on nothing!  We are so excited about this celebration!  Of course, I have no clue as to whether I will be able to do 21 days, so we are taking it one day at a time.  I am celebrating x days today.  This morning, I am listening to a Daughtry CD that I borrowed from the library, and celebrating.  I have never heard Daughtry before, because I don’t listen to the radio, but I understand he’s quite popular these days.

I will probably not keep you posted on my progress.  It will be too embarrassing if I screw up.

Today I will meet my case manager from the Department of Mental Health for the first time.  This will be mainly yet another intake meeting–the third.  We are meeting with the director at my home.

After that, I am seeing an orthopedist about my knee.  It is time.  It’s been three weeks now that I have not been able to walk 1) without pain, and 2) without a mobility aid (crutches or cane).  Frequently, I have pain even when I am off my feet.  I have spent little time outside my home.  I have been miserable because of this injury.  I can no longer do this alone.  I need specialized, professional help with it.  I got an appointment very quickly.

As to my anorexia…I am still restricting…eating mostly vegetables….My weight is dropping…again….

I still have edema and I hate it.  But it is lessening.  Today I said to myself, “Fuck it.  It is going to be hot out. I’m wearing shorts.”

I have developed these incredible upper body muscles from using crutches.  Forgive me for boasting, but last time I was at the gym, I was nearly able to lift my entire body off the floor using the triceps pull.  My muscles are larger now (muscles really show when you are very skinny) and I am absolutely positive that I can lift myself off the floor entirely now.  Next time, I’ll give it a try when nobody’s looking.  Of course, I’ll take the pin out of the resistance thingy after I’m done!

I still get vertigo. I get it about 75% of the time–that is, I get it ten minutes after the first morsel of food I put in my mouth in the morning, and it lasts for several hours, 75% of days.  There seems to be no pattern.  On Sunday, it lasted all day.  I swear I am not making this up.  I know it comes from my anorexia.

I have been keeping Microsoft Excel charts of my food.  I have been doing this obsessively.  I spend hours at it.  I print them out at the end of the day.  These are secret charts that I plan on showing no one.  I think the only good thing about it is that I am learning Excel!  More on this later.  I intend on writing an entire entry discussing these charts.

Okay, enough.  Have a nice day.

Trileptal reduction–dose cut from 600 to 300–it's been over a week now–progress report

I’m okay with it.  I’m sleeping fine.  I’m definitely not manic.  I am not having crying jags as I was before I got on Trileptal, nor am I emotionally labile.  I am not having ups and downs.  I am not going through eating binges.  My eating is progressing about as you would expect.  My commitment to improvement in that area has increased because of circumstances in my life that give me motivation to eat well and maintain a healthy body and mind.  This has nothing to do with the Trileptal except that the lowered dose has improved my running ability, lessened my chances of injury, and has allowed me to run on the treadmill in addition to running on the track.   So I guess it has a lot to do with the lowered Trileptal dose indirectly improving my feelings about my body–and, my ability to care for my body sensibly.

Let me explain to those of you just popping in out of cyberspace: Trileptal has the side effect of ataxia.  It’s a common side effect.  Ataxia is a weakening of the extremities, namely the wrists and ankles.  You don’t notice it in your wrists unless it’s pretty bad, and in that case, you might have a little trouble typing, or you might drop things or have trouble lifting things.  But weakness in the ankles means you “sway” while standing.  It is noticeable if you put your feet together and hold your arms out in front of you.  But for many, it affects walking.  For me, it meant leaning on something while waiting for the bus, and needing to stand with my feet separated.  It also meant–I know this sounds silly–feeling like I was falling over when I bent over to pick up Puzzle’s poops when we were out for a walk (Puzzle is my dog).  Another thing was that although I could walk fine, my gait had changed.  My feet were not aligned; they were separated considerably.  I developed shin splints from walking.  Eventually, I sprained my ankle!  Eeks!  It healed quickly.  I was only lucky.  When I tried to run, I found that I ran on my heels.  I was completely unable to run on the treadmill.  This would NOT do.

When I complained to my doctor–sorry to bore you regular readers, but I know that people google me and pick up these posts–my doctor said it was the antipsychotics, and told me, “Just stand with your feet apart!”  No, Dr. P.  No, no, no no.  Without her permission, I cut the dose in half.

It’s been a week now.  I have yet to tell anyone on my treatment team what I have done.  I plan to tell Dr. P next time I meet with her.  I’m absolutely fine, and the Trileptal is helping me just as much at 300 as it did at 600.

My medications are as follows: Risperdal 3, Synthroid .1 (for my underactive thyroid), Lamictal 600, Topamax 300, Trileptal 300, Abilify 20.

So you see, I’m on three anticonvulsants.  I felt it was safe, therefore, to go down on the Trileptal with no ill effects.  I do not have seizures.  This was confirmed by the neurologist I saw a couple of weeks ago.  Even though going down on an anticonvulsant can cause seizures anyway, I was protected by the Lamictal and Topamax.

Originally, I was put on Trileptal in January while at McLean Hospital for emotional lability and binge eating.  Trileptal worked wonders for both.  I wasn’t binge eating at McLean but I strongly felt the urge.  You can tell when the urge is gone.  It also helped with depression at the time.  I do not believe it helps with depression now.

I was put on Effexor toward the end of my stay at McLean.  Without Dr. P’s permission–this is the only other time I have done this–I stopped the Effexor.  I had to do this because Effexor caused binge eating.  It was a shame, because Effexor helped with depression, but it wasn’t worth it.  As soon as I stopped the Effexor, the bingeing stopped–thank goodness–that is a Hell I do not want to go through again.  Both times I have made these changes in medication without Dr. P’s permission have been on weekends when Dr. P isn’t available except on pager, anyway.

So right now I’m fairly happy with my meds the way they are in terms of my psychological stability.  I do worry about my slight case of Tardive Dyskinesia in my right hand.  It was worse for a while there.  It has–believe it or not–lessened over the past few days.  You could see it when I put my hand in my pocket.  It is only in my right hand.  It doesn’t affect my handwriting or typing or ability to perform any task.  It is there when I hang my hand at my side.  The doctor at the community hospital denied that I had TD, saying she didn’t notice a thing, and that what I had was not TD, but a tremor.  No way.  It is TD.  There is no doubt in my mind of this.  It lessened when we halved the Risperdal (this Dr. P and I did very, very carefully last year).  Of all the “atypical” antipsychotics, Risperdal is perhaps the most likely to cause TD (I’m not exactly certain of this so don’t quote me on it).

The future of my meds: I wonder if someday I can lower my antipsychotic medication–the Abilify and Risperdal.  I wonder how much the Abilify is actually doing at this dose, but I know how difficult it has been to lower Risperdal in the past.  I have no desire to lower the anticonvulsants any further.  I think all three are essential and are helping.  I worry about the TD and want to speak with Dr. P about it–again–next time we meet.  I will keep you informed.

For those of you bored by medication talk, I apologize.  For those of you who are interested, stay tuned.  There are tags for “Trileptal ordeal” and “Tardive Dyskinesia” on the sidebar that you can click on for more posts.

UPDATE: I lowered the Trileptal to 150 June 7th due to further “swaying.”  At the time, I was not running because of a really bad knee injury.  I couldn’t even walk without crutches.  I figured the “swaying,” which had suddenly returned, was going to cause a problem on crutches, a danger in fact.  I lowered the Trileptal by cutting the 600 tablets into quarters starting the night of June 7th.

A week later, I began some serious bingeing (on food).  I had already gone through a period of bingeing on 300 mgs Trileptal, but hadn’t thought that this was caused by the lower dose.  I just wasn’t thinking straight.

In between all this, my injury had been diagnosed as an arthritis flare-up.  I didn’t even know I had arthritis in my knee, but it all made sense: I had fractured it in 1999 and at that time was told that this could happen.  So I was advised by this specialist not to run or walk for fitness.

In other words, the treadmill was out.  So last night, I did some thinking, and realized that I had made this promise to myself, that if the bingeing returned, I would return the Trileptal to its original dose.  Trileptal stops the bingeing.  No more treadmill = no necessity to eliminate “swaying.”  I’ll live with it.  I do not want to live in Bingeing Hell.  Anyone who has an eating disorder knows this place.  You do not want to go there.

So that is how the story went.  Have a nice day.

 

Trileptal dose halved–Day Four

After taking a total of 300 mgs Trileptal yesterday (down from 600) I feel fine.  Great, actually.  I am not wobbly.  I was able to run on the treadmill this morning.  I walked 1/4 mile, ran 3-1/4 miles, then walked 1/2 mile to cool off, total 4 miles, in around 50 minutes.  I had no problem whatsoever with the treadmill.  My endurance was fantastic.  I had a smile on my face the whole time. I listened to the group Virginia Coalition. The album is 40 minutes long, perfect for my running segment (37-38 minutes) and also listened to Vertical Horizon and Anberlin for my walking segments.  But I am getting off topic here.  I feel fine, no mania, no crying jags, no mood swings, no emotional lability whatsoever, on the lower dose, nor have a I had an eating binge.  Because I have been able to run so much better, I feel tons better about my body.  My eating has improved tenfold.  I now eat three meals a day and a bedtime snack, and drink a quart of milk a day.  I have been doing this since I started running and putting in more walking mileage.  It seems that I put in about seven miles every morning before my day gets rolling.  Then later, I might do three more walking miles in the afternoon, if I feel up to it.  I’ve been doing this for about a week now.  I feel positive about the Trileptal reduction so far.

UPDATE: I lowered the Trileptal to 150 June 7th due to further “swaying.”  At the time, I was not running because of a really bad knee injury.  I couldn’t even walk without crutches.  I figured the “swaying,” which had suddenly returned, was going to cause a problem on crutches, a danger in fact.  I lowered the Trileptal by cutting the 600 tablets into quarters starting the night of June 7th.

A week later, I began some serious bingeing (on food).  I had already gone through a period of bingeing on 300 mgs Trileptal, but hadn’t thought that this was caused by the lower dose.  I just wasn’t thinking straight.

In between all this, my injury had been diagnosed as an arthritis flare-up.  I didn’t even know I had arthritis in my knee, but it all made sense: I had fractured it in 1999 and at that time was told that this could happen.  So I was advised by this specialist not to run or walk for fitness.

In other words, the treadmill was out.  So last night, I did some thinking, and realized that I had made this promise to myself, that if the bingeing returned, I would return the Trileptal to its original dose.  Trileptal stops the bingeing.  No more treadmill = no necessity to eliminate “swaying.”  I’ll live with it.  I do not want to live in Bingeing Hell.  Anyone who has an eating disorder knows this place.  You do not want to go there.

So that is how the story went.  Have a nice day.

Lower dose of Trileptal–Day Three

For those of you just dropping in out of cyberspace, I am lowering my Trileptal without my doctor’s blessing due to “rocking” on my feet while standing.  I started taking Trileptal in January.  This “rocking” is from the side effect called ataxia, which is a weakening of the ankles and wrists.  Some people have ataxia so bad that they wobble while walking.  I, thankfully, can walk just fine, but I have noticed that I walk with my feet slightly separated, that is, not aligned properly.  A couple of weeks ago, I sprained my ankle.  I was very fortunate that this was a minor sprain, and I it has healed entirely.  When I pointed this problem out to my doctor, her response was that it was due to my antipsychotics, and that it was a “balance problem,” and that I should simply stand with my feet apart.  Bullshit, I thought.  This is unacceptable! I left a message for her two days ago begging her to lower the Trileptal.  Her response was that she objected to this.  My dose was 600.

I had my run this morning after 150 Trileptal last night, and felt fine–back to normal at last.  I had a total of 450 yesterday, which included the accidental 300 in the morning, which occurred because I goofed and took my bedtime meds instead of my morning meds in the morning.  How stupid can you get!  I use a med organizer, and I just wasn’t looking!  So yesterday I had 450.  Today I had decided to take 450 spaced out, that is 150 three times, over the course of the day.  Thankfully, I went for my run BEFORE taking my morning 150.  Now, I am “rocking” on my feet badly.  I took the 150 Trileptal at 8am.  It kicked in at 8:30, and now it’s 10:30.  The “rocking” has only gotten worse, not better.  I’m not certain how wise it will be to go to the library.  I feel miserable, not sedated, just miserable.  I am a little unsteady in my chair even.  Totally discouraged.  I have decided to take 150 tonight, lowering the dose to 300, and take none (obviously) Monday morning, and 300 earlier than usual Monday night, so it won’t affect me Tuesday morning.  I plan to go running at the gym tomorrow morning.  It will be raining, so I can’t run at the track.  I should be okay.

So far, I seem to be okay mentally.  I think the lessening of the obsessions has nothing to do with the Trileptal, and everything to do with the fact that I am running now. Of course, lowering Trileptal enables me to run.  Running helps me feel better mentally, and feel better about my body.  It also helps me eat better.

So there, Dr. P.

UPDATE: You can follow this whole story by clicking on “Trileptal Ordeal” below.

UPDATE: I lowered the Trileptal to 150 June 7th due to further “swaying.”  At the time, I was not running because of a really bad knee injury.  I couldn’t even walk without crutches.  I figured the “swaying,” which had suddenly returned, was going to cause a problem on crutches, a danger in fact.  I lowered the Trileptal by cutting the 600 tablets into quarters starting the night of June 7th.

A week later, I began some serious bingeing (on food).  I had already gone through a period of bingeing on 300 mgs Trileptal, but hadn’t thought that this was caused by the lower dose.  I just wasn’t thinking straight.

In between all this, my injury had been diagnosed as an arthritis flare-up.  I didn’t even know I had arthritis in my knee, but it all made sense: I had fractured it in 1999 and at that time was told that this could happen.  So I was advised by this specialist not to run or walk for fitness.

In other words, the treadmill was out.  So last night, I did some thinking, and realized that I had made this promise to myself, that if the bingeing returned, I would return the Trileptal to its original dose.  Trileptal stops the bingeing.  No more treadmill = no necessity to eliminate “swaying.”  I’ll live with it.  I do not want to live in Bingeing Hell.  Anyone who has an eating disorder knows this place.  You do not want to go there.

So that is how the story went.  Have a nice day.