Warning…this is going to be long, but PLEASE PLEASE read it. My marriage is on the brink of collapse and my wife is near suicidal. What makes this problem so very frustrating is that I can describe EXACTLY what happens, how it happens, and in what order it happens, but nobody can offer any help. My wife has been having “episodes” for the past few years, however in the last year they have become MUCH more frequent.
The Beginning: A few years ago, while I was away at college, my wife’s (girlfriend at the time) parents called me late at night to say they were taking her to the hospital for a drug test. She was walking into walls and talking incoherently. Although she has absolutely no history of drug abuse, they thought it must be that she had taken some of her mom’s painkillers or some other drug. At the hospital her symptoms began to clear, and, of course, her drug test was negative. We chalked it up to a freak occurrence - maybe some bad food or something - and forgot about it.
The Middle: It happened a few more times over the next year or so, but it was very infrequent and usually mild. She would just seem “vacant”, but able to respond and such. Her family physician thought that it could be panic attacks and prescribed her with Lexapro. Her condition did not improve. Two years ago, she had one severe enough that warranted another ER visit (mind you, w/o insurance of any type). They checked the obvious stuff (sugar level, blood pressure, drug test, EEG, CT scan, EKG), but nothing came up. By the time we left the ER that night, she was back to normal. At that time, they said her nutrition levels were low – especially potassium. They suggested some vitamins and eating high-potassium foods, but had no other suggestions. NOTE: She has been taking vitamin and iron supplements ever since (this will be important later). It happened a few more time of varying intensity, but I was able to start nailing down a definite pattern. It happens the EXACT same way, every time. The only difference is where it “stops” and how fast it gets there.
Symptoms: There is a very specific order of events. It generally begins up to 24-hours PRIOR to the cognitive symptoms with heavy mood swings and profuse sweating. She can get very irritable and will start to sweat like a fat man in 90 degree weather – even in the dead of a Pennsylvania winter. The sweating will continue over the next several days until the episode is completely over. Lately, the episodes have lasted 3-4 days, with the first and last days being milder than the middle days.
Day 1 of cognitive effects: Her mood will be completely opposite – nice as pie. Literally, I can scream in her face with the nastiest words, and she won’t even flinch. Additionally, she’ll have diarrhea and usually a headache. Almost always, the cognitive symptoms will begin in the evening – usually after 5pm. As I said before, the symptoms following can stop at any time and will begin to “lift” in the opposite order that they appeared. When the cognitive symptoms begin, I’ll notice a change in her voice (it becomes slower and more drawn out). Her eyes will seem vacant – like she’s being hypnotized. Within 15-20min her muscles will begin to tremor all over - every muscle, from lips to legs. Sometimes (especially on the first day) it will not go past this point. If it continues, at first the tremors are light, but they get progressively worse until she can no longer hold things. She’ll get the hiccups (I’m guessing her diaphragm is spasming as well?). She can’t feed herself or drink. She’ll feel like she needs to use the bathroom frequently, but never actually does. Her gait becomes very wrong. She will not be able to walk unassisted (although she WILL try to. If I don’t run to help her, she will fall). By this point, speaking becomes very difficult. She tries, but it’s like her brain cannot figure out how to make words. For instance, she might attempt to say, “I need a drink”. What she says is, “I…I…eh…dri-….”. At this point it has been anywhere from 1-3 hours since the beginning. By now, she probably began passing out. She’ll be sitting at her computer or watching TV, and she’ll just pass out for a few minutes. Then she wakes up again. If I can get her to lie down in bed, sometimes she’ll fall asleep for hours – even if she’s only been awake for a few hours and got a full night’s rest. If this is the case, it’s near impossible to wake her. I can only get her up by shaking her violently and yelling, otherwise I must wait until she wakes on her own. She’ll also begin exhibiting the oddest symptom of all – she gets EXTREMELY aroused. She’ll take off her pants and begin touching herself. Then she’ll start asking me if I want to have sex (usually in the form of, “Wan…wa…do….” *sigh of frustration followed by pause*...”wanna…wan..fu-…-ck…me”). This is NOT the way she normally behaves or talks. She’s actually fairly modest, and I have never EVER seen her act this way except while she is going through an episode. Of course, I turn her down. Literally less than 5 minutes later, she’ll say the EXACT same thing…as if the previous event had never occurred. Even if I say, “don’t you remember just asking me that 2 minutes ago??”, she’ll have no recollection. This may happen several times in a row. Also, if it’s gotten this far, the next day she will have no recollection of these events. By now I’m usually trying to get her to go to sleep. It seems this is the safest way for her to ride this out, since this behavior will last for hours and hours. Once she finally does fall asleep, her legs (and only her legs) are very restless. She’ll generally bend them at the knees – feet flat on the bed – and sway her legs from side to side…all while fast asleep and without moving her arms or head. This movement actually persisted through HEAVY doses of depakote while she was in an induced coma in December (see below).
Day 2: She’ll wake up feeling a little dizzy and “weird”, and she’ll have a headache again. She’s otherwise normal. She’ll be fine throughout the day and in a good mood (like before, as if nothing happened and life is bliss). Generally, the cognitive symptoms will repeat that evening, but this time she is almost guaranteed to get the full host of symptoms described above.
Day 3: Again, she might wake up feeling weird and with a headache. Again, she’s fine & happy during the day and the symptoms repeat in the evening. Her episode may be as bad as before, or she may seem to improve with a milder episode.
Day 4: She may have a mild episode again today (in which case the following will be on the 5th day). If her episode was mild the previous day, she may awake feeling normal, but very depressed and/or anxious. She’s in a bad mood. Sometimes she will have a panic attack, but the topic of the day is usually how much her life sucks and how nobody will ever find a cure. She’ll talk about how she’s never going to be able to have a baby (we’ve been holding off because of this problem) and how there is no reason for her to live. She’ll have absolutely no interest in doing anything. Whether this is a symptom of the disease, or just depression caused by the repeated episodes, we haven’t figured out yet. Of course, she is generally depressed due to this problem, but she will feel FAR worse this day than any other day. Even by her own accounts, she’ll note that she doesn’t understand why she feels so much worse that particular day. In other aspects, she’s back to normal. The cycle will repeat in a week or two.