Deja vu

I suddenly had three episodes of intense deja vue in the past 5 day. Last Wednesday, Thursday and Saturday the sense of deja vu just overwhelmed me, leaving me confused and struggling to stay grounded.

I also had a few moments of stumbling while walking. And once I fell while getting out of the car. Fortunately we were parked on the grass. But I’m still bruised up. I don’t know if the deja vu and stumbling are related, but it’s a bit disconcerting.

I always hate to mention any such issues to my husband for a couple of reasons. First, he’ll suggest I go to the doctor, and I don’t think that that always helps. I do need to get my blood valproate levels and liver panel checked. Depending on how those turn out and whether I have more seizure-related (?) activity, I’ll consider a visit to the neurologist.

But the other reason I hate to say anything to my husband is that he can’t do anything about it. He already does so much for me, and I often feel like a burden to him. So I hate to bring up yet something else.

Tremors

All the anticonvulsants I’ve been on have left me with tremors in my right hand. They are drug-induced kinetic tremors, as opposed to resting tremors that are typical of Parkinson’s disease. They happen primarily when I am holding something in my right hand. They are most obvious when I am in the midst of an activity such as bringing a glass to my mouth or putting on eye liner — an activity that requires some intention and precision.

The most frustrating part about it is how the shaking looks in public. I try to drink with my left hand but can’t always. And I worry that people will get the wrong idea seeing how badly my right hand shakes. Considering that it’s really none of their business, I tend not to mention it. Furthermore, doing so would require a lengthy explanation of having epilepsy, oh but not the grand mal seizure kind, and how it’s just the medication that makes me shake.

My daughters always notice it, and point it out, especially when it gets really bad. It it often bad enough to make it difficult to write. Typing is fine. But my handwriting can be just horrendous when the sjaking is particularly strong.

Moments of lightness

When you are used to feeling bad so often, when you have a day in which you feel good, you notice it. It’s not that people like my husband, who is perpetually happy and energetic and pain-free, take their feeling good for granted. But I do think that those of us who are used to feeling bad more acutely notice an occasional lightness of being.

Just this morning I was sitting across the couch with my 20-month old son as we were reading books together. I was struck by a sense of lightness. My chest swelled. My head felt almost (positively) tipsy. And my eyes teared from this terribly infrequent sense of wellbeing.

The sad thing about this moment is that it comes from being back on Depakote. And the wonderful thing about this moment is that being back on Depakote allowed me to have this moment.

On again

Well, that was short lived. I said a few weeks ago (see post) that I was taking myself off of Depakote because my health insurance won’t pay for it. I just can’t stay off. I’m not even fully off. I’ve been reducing the med so slowly that I was taking one pill (500 mg) every two days. But the effects are worse than paying out of pocket for the drug.

I’ve had frequent headaches, a full-blown migraine and borderline migraines for the past 10 days. My tremors have increased. My thinking and speech has actually been worse going off of the med than being on it.

The last straw was blowing up at my husband and the drive-through worker at Subway today. I just can’t do drive-through at Subway. The menu isn’t complete. I don’t eat their food often enough (maybe twice a year) to be familiar with the menu. And there are too many choices to make in a drive-through line. But I was driving my husband home from the emergency room where he was diagnosed with cellulitis in his foot. He was starving and suggested driving through Subway so that he didn’t have to get out of the car. Fine. The worker was, in my opinion, impatient with me when I didn’t know what I wanted and then when I didn’t know what my options were for “vegetables” on my sandwich. When I yelled, “Screw it. We’ll come in,” to the worker, my husband was so embarrassed that he yelled at me to take us home.

True, I’ve been intensely on edge, irritable and in pain while going off my med. When my husband was totally baffled about my behavior, I finally told him what was going on. I had not told him before that I was taking myself off the medication.

Trying to save my family money by going off the medication just resulted in upsetting the delicate balance at home that exists only when I am fully medicated.

It really sucks. But I think it perfectly illustrates why so many people on long-term meds end up perpetually going on and off of their medication.

Every time I’ve gone off a medication and had bad results, I’ve sworn, “I’ll never do that again.” And yet here I am again.

By the way, I’m sorry, nameless, faceless Subway worker.

Video game epilepsy

The most severe seizure I’ve had was while playing Final Fantasy X. For you fellow fans, I had just defeated Biran and Yenke and had started the trip up Mt. Gagazet. Suddenly, everything felt wrong. I just knew that I had already finished this part of the game, even though I recognized that this was my first time there. The sensation of déjà vu and dread were so intense that I felt the need to get up and run away. But I felt immobilized. Tidus and Lulu (two characters in the game) were suddenly in my living room. I didn’t know where I was, even though I knew that I was supposed to be home. Then tunnel vision, and I was pulled backwards out of the room. I heard yelling circling my head.

When I came to, I was still lying back on the couch, but my hands had fallen, the game controller was on the floor, my head was draper back too far over the pillow, and my neck hurt. I felt paranoid. I could not remember what day it was, and, for some reason, this was of the utmost importance to me. I couldn’t remember where my husband was (England) or my children (with their dad). I felt scared and stupid for not knowing where they were, but still not knowing the date made me panic the most.

Looking at the TV screen, I would feel déjà vu again. I felt myself slipping into more seizures as my surroundings still didn’t look real. I went to my bedroom, sat on the bed, rocked and repeated the mantra, “You’re OK. You’re OK. You’re OK.” I was still slipping, so I called my husband in England. It was late enough here that he should have been just waking up. His voice helped ground me and bring me back to reality.

But off the phone, I still felt unsteady and unstable. I stood in front of the mirror and repeated the mantra while looking at myself. When it felt too difficult to keep myself “here,” I went to the hospital. (I took a cab. Cheaper and quicker than an ambulance. And I didn’t want to disturb my neighbors at 3am.)

Apparently, video game epilepsy is a form of photosensitive epilepsy. Only 3 to 5% of people with epilepsy are photosensitive. And several factors affect whether such people will have a seizure in response to strobe lights, grids, parallel lines or video games. Sleep deprivation, fatigue and watching/playing too long facilitate a reaction, as do the usual seizure threshold-lowering factors of alcohol, stress, hormones and skipping your medication.

In my case, I had not been sleeping well. I was up late (past midnight) playing FFX for several hours without break. And I was worried about our cat who was sick and ended up dying the next week. I have not had another seizure around strobe lights or while playing video games, though I have always felt strange around strobe lights. I still play video games, but I take breaks, keep the room well-lit and try not to play too late at night.

Seizure vs. fainting

When I was 7, in first grade, I had what I believe in retrospect was a seizure. My classmates and I were standing on stage rehearsing for a play. I remember things going black, falling to the ground and buzzing yelling circling my head. When I came to, my music teacher was rousing me. Kids were still standing in their places. The music teacher sat me in a chair, and my mother came to pick me up. I remember feeling worn out and confused.

My mother took me to my pediatrician. He asked if I had eaten breakfast, which I had. He did the routine check of listening to my heart and checking my blood pressure. Then he pronounced me as having fainted. He told me to eat a good breakfast every morning, which I already had.

I always thought it was weird for that episode to be automatically called fainting (specifically vasovagal syncope) when I had eaten and didn’t remember feeling lightheaded. In the years after that episode, particularly when I was a teenager, I did have episodes of fainting or near-fainting. They were always preceded by feeling lightheaded and flush and hearing ringing in my ears. I could avert an episode by lying down or sitting down with my head between my knees.

After being diagnosed with seizures, I looked back on that fainting episode at age 7 and found more similarities with seizures. The confusion I felt afterward is more like the post-ictal phase of a seizure. I have never felt confused after fainting — worn out, but not confused. The ringing yelling circling my head is the most common part of all of the seizures I’ve had. I hear this yelling circling my head as part of the aura or the beginning of the seizure. I have already blacked out at that point. During the episode on the stage, I don’t believe that anyone yelled or screamed. I was told later by a friend that someone had said at the time that maybe a cat bit me. No, it makes no sense, but we were 7, and I loved cats. My classmates certainly weren’t circling me while screaming, yelling or singing.

I have read that too often people are diagnosed with a seizure disorder when really all they have is syncope. And yet I have had doctors on two separate occasions misdiagnose my seizures as syncope. Perhaps it was my fault for not giving as much detail as I could have about the episodes (such as the yelling and the confusion). But if you don’t know you’re having a seizure, you don’t know what information you should be giving. Instead of a doctor just asking, “How did you feel afterward,” perhaps she should additionally ask more specific questions, such as, “Did you feel tired/confused/disoriented/etc.”

Attempt no. 1

Seven years ago, D tried to kill herself by taking an overdose of pills. I believe that she meant to succeed, and yet she did not take as many pills as she could have–she left some pills in the bottles. She took an antidepressant, sleeping pills, pain pills and a muscle relaxant. When she didn’t show up for work, a friend she worked with went to her apartment and found her in bed barely breathing. In the ambulance on the way to the hospital, D stopped breathing but was revived.

We were friends then. Not too close at that point, but close enough that I visited her in the hospital. She was furious at having been found and saved. She railed against the doctors and her visitors. She asked everyone to help her get out of the hospital so that she could do it again–and do it “right” this time.

Her in-patient psychiatrist told her divorced parents that she needed to stay in the hospital for intensive therapy. Since she refused, the psychiatrist suggested that they try to have her committed.

D’s suicide attempt was a complete shock to her family and to her friends. We weren’t even aware that she was taking an antidepressant. She never talked about it. And since she lived alone, no one ever saw her stash of pills.

I felt so bad for her parents. One minute they think they have a happy, healthy daughter. Then they are being pressured by some psychiatrist to have their daughter committed to a psychiatric hospital. Having someone committed isn’t as simple as signing them into a hospital. It requires appearing before a judge and in part proving that the person in question is (1) a threat to themselves and/or to others and (2) incapable of making decisions for themselves. There is no guarantee that a judge will approve a committal. And D’s parents worried that if they failed at the effort, D would be so angry at them that she would never forgive them.

D’s parents consulted with an attorney and with some of D’s friends. The psychiatrist seemed to be making no significant headway with D, and she would be allowed to leave the hospital in a few days. So D’s parents finally decided to pursue having her committed.

Amazingly, when they told the psychiatrist what they had decided, he said that it was no longer necessary. He believed that D had “turned a corner” and would do just fine with out-patient therapy. In fact, the psychiatrist told D’s parents that they would lose if they tried to have her committed since he, the psychiatrist, would no longer support their efforts. (WTF?)

As far as I know, D has never learned about her parents’ decision. If she did know, I think that she would cut off all contact with them. She dumped a friend who told her that she was angry at D for attempting suicide in the first place.

D and I talked about her suicide attempt only a couple of times. At first, I thought that it might bring us closer. I certainly related to her being depressed. I never knew that she could relate to it in me. But it quickly felt awkward to compare notes, if you will, on depression. And, even if I did want to ask, it felt inappropriate to ask, “So, any more suicidal thoughts lately?” I didn’t even ask how therapy was going. That was something I would not want someone to ask me about.

Maybe I was too stuck up my own ass, the way depressive people can be, to reach out to D in a more helpful way. I based all of my words and actions on what I would want people to say and do with me. I used D’s newly (to me) acquired label of Depressed to define new guidelines about how to treat her. In short, I backed off, and so did she.

A relationship that could have been mutually supportive and beneficial has faded into one that consists only of a yearly e-mail or two.

Not just a headache

My 13-yr old daughter gets stomachaches. Honestly, we were sort of dismissive about them for a while because they never follow any pattern. They aren’t caused by eating too much, eating too little, not eating at all or eating the “wrong” thing. They have always been self-limiting and would go away after about an hour or so.

While digging around for migraine-related information for myself last fall, I stumbled upon abdominal migraines. The description fits my daughter perfectly. Dull pain in the upper, middle part of her abdominal that is usually moderately intense (severe on a few occasions). During the migraine she has no appetite, appears pale and usually feels nauseated.

Fortunately her abdominal migraines aren’t severe or debilitating enough that we have considered prophylactic treatment. She usually gets over them easily enough with a homeopathic remedy or just rest. Apparently, abdominal migraines usually occur in childhood and tend to go away in adulthood. However, since both my sister and I have classic and common migraines, I fear that my daughter’s abdominal migraines may turn into the head type one day.

Noncompliance and health insurance

Patients may not comply with their doctors’ orders for many reasons. They don’t understand the orders (“Does ‘once’ mean ‘una vez’ or 11?”). They don’t understand they reason for the orders (“It’s not like I could cause any ‘superbacteria’ by not finishing my antibiotics”). They stop following orders when they start feeling better (“I don’t feel schizophrenic anymore”). They stop following orders when they start feeling worse (“I’d rather be manic than feel like a zombie on lithium”). They disagree with the orders (“No vaccines for us, thank you”).

Of course, there are myriad other reasons for patient noncompliance. My current reason for noncompliance is health insurance. I am taking myself off of Depakote ER because my insurance won’t pay for any seizure-related expenses, and the medication is too expensive for me to keep paying out of pocket every month.

Depakote ER has been costing me $148 for sixty 500-mg pills. Since I am supposed to take two pills per day, one prescription lasts me one month. To make a script last longer, I have played around with how many pills I take each day. I’ve been taking one on odds days and two on even days. If I start to get a migraine, then I take two for several days, then go back to alternating days.

For the most part, Depakote works well for me. It keeps seizures auras away. It lessens the frequency and severity of my migraines. It stabilizes my mood. The side effects aren’t awful. I don’t like the increase in acne or the shaking in my right hand. But I don’t tend to gain uncontrollable weight on it, and the mental sluggishness isn’t debilitating.

Ultimately, it’s having to pay for the drug myself. I’m not going to start a U.S. healthcare discussion right now. I’ll also delay a diatribe on the cost of prescription drugs. This is more of a personal decision than an attempt at social reform or protest. Though what a ripple we could create if we all just went off of our expensive anticonvulsants!

No, I’m not inciting anything. Yet.

I’ve been taking one Depakote every 36 hours for the past few days to take myself off completely. I have only 3 pills left. I already ended up with a migraine yesterday. My daughters were leaving town, so I just had to suck it up. But it kept building all day. I finally knocked it out (or masked it) last night by taking 2 Tylenol, 2 Motrin and plain Alka Seltzer; a few hours later 2 Excedrin and more Alka Seltzer; and finally 2 more Motrin and Alka Seltzer Cold. Today I feel groggy and hungover. The headache is the worst, but the day after is always almost as bad.

Paying $148 per month may end up feeling quite reasonable. In the meantime, maybe Dr. V will put me on some generic med that still helps.

Eliminate the negative

For a while now I have been contemplating doing an elimination diet–basically not eating anything that appears on any list of foods suspected to trigger or exacerbate migraines, headaches, depression, PMS or seizures. The problem–in addition to the fact that I don’t want to live without chocolate–is that just about every known food is a trigger of something or other. Add on top of this trying to “eat right for your type” (I’m what Dr. Joseph Mercola calls a “protein type,” but you may follow any one of myriad other nutritional types), and it becomes dizzyingly difficult to plan a meal, much less a grocery list for the whole family.

I know that my diet is not optimal. But a few things are making me lazy about changing it. I sense that I would most benefit by making huge changes–not just cutting back on sugar, for example, but really cleaning out the kitchen–and such changes usually require a significant event to get started. Even though pain avoidance is a stronger motivator than pleasure seeking, I’m so used to feeling perpetually bad that it often feels as if nothing I do would make any difference.

I had food sensitivity testing done 9 years ago. I don’t have the list anymore, but I remember being sensitive to wheat, oats, barley, rye, corn, and various herbs and spices. I was so fed up with having several migraines a week that I eliminated from my diet every food on my list plus chocolate. And it worked . . . for a while. For almost a year, my migraine frequency and severity were significantly decreased. Then the migraines started to return. I know that there is so much more involved than just food, but this was really distressing to me. I mean, I had given up chocolate!

After plateauing in regards to migraine frequency and severity, I slowly added back into my diet most of the items I had eliminated with no ill effects. Of course, one thing led to another, and my diet ended up as a free-for-all again–as it is now.

I don’t have a ton of hope that an elimination diet will “cure” me, but I think I’m almost desperate enough to try it again. At this point, the biggest obstacle will be convincing my family (husband, 13-yr old and 11-yr old daughters, and 20-month old son) to join me and convincing myself that I can live without brownies.