All That is Good Sometimes Isn’t.
About four or five months ago, my PDoc and I decided to try Trileptal. Now let me say right off the bat…I do NOT want this article to discourage anyone else from trying this medication. It was just a case of one of the meds working for A, B, and C, but certainly not for me.
He asked if I’d ever had a low sodium problem. Nope. As a matter of fact, I’ve always had low blood pressure and my warped way of thinking assumed that if it weren’t for all salt I consumed, I’d have zero blood pressure. In other words, I was a salt freak.
So on to the Trileptal I go. Keep in mind, that I have more mania than depression but trust me, if and when I hit a depressive spell, which isn’t that often, it can last up to a year. So my PDoc’s main goal was to get my mania under control before working on the depression. When I first began taking the Trileptal, I had the typical forewarned light-headedness and nausea. I kept a disposable shaker of salt at my desk and would take a handful whenever I felt that feeling coming up. After about three weeks, I no longer needed the salt. I didn’t even crave salt.
Ever since I can remember, I’ve had trouble with insomnia. Big surprise right? Well I kept telling the PDoc that I’m only getting two or three hours a night and the pills put me to sleep, but it’s staying asleep which is the problem. At 3:30am my eyes pop open just like a mechanical doll and I’m not merely, almost awake, hey buddy, I’m full blown awake. To which the PDoc stated that it was the depressive side waking me up. Excuse me? Well that makes no sense to my mind whatsoever, but he’s the one with all the initials behind his name so I let it pass.
Even back in the days when I was abusing alcohol ( wayyyy back) I could drink like a fish and pass out maybe for 30 minutes and bam, wide awake again. I actually slept in till 5:30a.m. the other morning and felt like doing a happy dance jig.
Anyway, back to the story. As I complained about the insomnia, he would gradually increase the Trileptal. Now remember, I wasn’t having my blood monitored because I’d never ever in my life been told I had low sodium. One thing that I noticed and my family and coworkers noticed was that I was getting mean. I’m always sarcastic in my humor but I was beginning to snap things at people I would never in a million years ever consider snapping at. By the end of the fourth month on this med, I went to my primary care Doc, actually a new one who had just moved into the area. I was having a regular cholesterol blood screen done and lo and behold, the new Doc noticed something the old Doc there had never picked up on. I have a lot of blood tests for non-Bipolar things because it seems I’m always picking up something. Anyway, new Doc immediately called my PDoc and told him what he’d discovered. Which was this: My sodium ion electrolyte levels had dropped so low due to the Trileptal that I was on the verge of having a brain seizure at any given moment.
I arrived home that evening to find an urgent message on my machine from my PDoc’s nurse stating that I WAS to be in the office the next day ASAP! Well now, we all know how hard it is to get into these people ASAP, so I figured something bad had to be in the offering. I go to see him and he is livid! He’s frantic! I’ve never seen him like this, totally uncomposed. He informs me I am to walk across the street to the Emergency Room and check in for at least two days so they can put me on a Saline IV.
Well Homer take me to the fair, because I have no idea what the hell is going on. So he tries to explain it to me. I can sense the seriousness of it but I told him no way I could go at that moment. I lived 22 miles away and have house pets to be attended to and live alone and I just couldn’t put my life on hold for 48 on a moment’s notice. Oh my, did he get upset. He said that if I were a member of his family or someone he loved, he would himself take me over there. To which I responded, well I’m not a member of your family or someone you love. Let me go home, do what I have to do then I promise I’ll drive back. “What if you have a brain seizure while driving?” he asks. I said, that first of all I didn’t think I would because I kept salt in the SUV and whenever I felt myself getting lightheaded, I’d pop some salt and that would make it go away. And that besides, if it happened on my way home or to the ER, then I guess he’d best call the local funeral home to come and get me. He had called an endocrinologist while I was there and got his opinion as well in case this was a genetic thing. Then he called the ER admit desk and explained I would be in later.
I did as I said, came home, called my family, made plans, explained the situation, even took a bath…(it was 104 degrees that day). However, before I had left for home, I swung through McDonald’s and got a large order of fries and loaded them with salt. I go to the ER, check in…a local D.O. from my hometown was on call, which I wasn’t too happy with because in my own personal opinion, a D.O. should never be in charge of an ER, only an M.D., but that’s my own bias.
What followed comes from the twilight zone. Once the ER admit desk figured out who the heck I was and that I had orders from a fairly higher up on the hospital ladder to be there, I was led into the vitals room. First note of bad omen: nurse forgot to take my blood pressure. Then she leads me to the room, etc. They leave the door open. Well now. Not only do I hear them all laughing and making jokes about MY being hypo manic and talking a mile a minute, but I am privileged to hear stories about other Bipolars who have been through that particular ER which really made me angry because of the new so-called patient’s privacy act. Every physician I see still has signup sheets in their offices, which were supposed to be hidden or removed.
Now keep in mind, the only time I’ve ever had an IV was during and after surgery so I was never conscious when they were put in. The young lady making the attempt was the same one who forgot to get my BP during my vitals so I knew I was dealing with a rookie. Granted, IV needles are larger than your regular needle. But for Abner’s sake…I finally asked her if she was drilling for oil in that vein! That was a pain I don’t ever want to go through again. And she wasn’t exactly adept or fast at it either. She took one look at my hand and said no, better go for the arm. Yep, that made me feel better. So while this young lady is trying to drill for oil in my right arm, the Doc came in. I’d smuggled in a bottle of water because of my always-increasing thirst, another sign of low sodium ions. He comes in and I’m sitting there on the bed with my legs propped up and my arms around my ankles…just like the girl in the Exorcist. I started off quietly with a “ya now Doc…you really shouldn’t be making fun of the patients when they’re in earshot and the door is open.” Well once the admonished and stunned looks fell from his face, he bent over my bed and rested his face next to mine and said they were doing no such thing and that they’d been laughing about the fact I said I’d seen him before and he didn’t remember. Nice try doc, not buying it…your body language belied your tongue. Besides, they weren’t exactly whispering their humorous comments.
So the drilling woman, ER nurse finally struck oil and let out a “whew.” I don’t have to tell you how comforting that was to hear. I said, is it over and she said, oh no, I just got the IV in, we still have to hook up the Saline which will burn because it’s salt water. Now I’m beginning to rethink that brain seizure thing as not such bad way to go. I’m looking around the room trying to find something to cause trouble with because I’m beginning to cycle into full blown mania not to mention getting a bit arrogant and demanding with the staff. She hooks up the saline… burn? I don’t’ feel diddly.
So Doctor loose lips comes back in to see how I’m doing. Oh I’m just ducky, He says, no more water ever. I tell him that I do quite fancy the new blue Gatorade and he says that they can probably get me some but not the blue. So I’m waiting in there, watching the saline bag while they get my room “upstairs” ready. Want to smoke badly. I yell out and ask if I can drag my IV tree outside to smoke. “NO.” Geeze.
Doctor Loose Lips keeps demanding my blood work results, which were sent upstairs because according to my PDoc I’m to be admitted for two days. They finally get the results back to ER and the doctor announces quite giddily and loudly, that “Hell she doesn’t need to go upstairs. Her ion levels are back to normal.” CRASH. I mean I start a bipolar crash so fast that well, trust me it’s fast. First the PDoc has me scared to death I’m going to die, then the drilling woman comes at me plus the humiliation of being made fun of by the staff. Those must have been some fantastic McDonalds’s fries after all.
The nurse comes in to check on me and I’m in tears and telling her I’m crashing and it’s almost time for my meds. So the Doc comes in and says, did you drive here alone to which I say yes. He said, “Well, I was going to give you your night meds” and I said “No way, they knock me out within 10 minutes.” And it’s a 30-minute drive home.” By now I can tell, not one person on that staff had the slightest clue what was going on because I’m bipolar. I hear the nurse tell the Doc “She’s cycling”. He responds with something to do with bicycling. GOOD GRIEF GET ME OUTTA HERE.
So I wait, I keep squeezing the saline bag to rush it along. It crosses my mind to yank out the IV like they do in all the movies but then as much as it hurt getting it in there, I’m fearful of how much it will hurt removing it. Besides, if I walk out on my own, the insurance won’t pay. Great. Trapped. Didn’t even need to be there. Still suspect that my levels jumped over 40 points with one large order of fries, but hey, I’m the patient. I waddle to the door and tell the Doc that the Saline bag is almost empty can I please go? He comes in, I’m sitting on the edge of the bed, head in hands, tears streaming down my face…he gives the bag a squeeze and says “Hell, there’s still plenty in there. You’re paying for it, may as well wait.” Without even looking up at him I say, “Um no, I’m not paying for it. My insurance is paying for it.” He leaves without a word.
Soon a new nurse enters…puts her arms around me, asks what’s the matter and I tell her I’m cycling and they won’t let me leave so I can get home and get my meds. Now I’m no idiotic, I saw immediately that this nurse is in a different colored uniform beside ER blues. I said to her, “You’re from the psych ward aren’t you.” “She just smiles and as the door opens I see a couple of officers standing there looking my way. Oh great, now the paranoia sets in and I wonder if they called them in case I “go off” or if they’re there for other reasons.
The psych nurse calmly gets up, goes over and removes the IV from my arm and tells me to get dressed and I can go home. I’m so grateful to this woman for rescuing me. I tell her I have to visit the restroom and is there anyway to do it without walking by all the staff that has been humiliating me all evening long. She sadly says no there isn’t. So I get ready, take a big swig of water, and open the door. Amazingly enough, there isn’t a single soul in sight except for the psych nurse. I’m assuming she asked the others to make themselves scarce during my departure.
So I drive home, smoking and weeping all the way. For the next 7 days I have to go to the local clinic to have my blood drawn for sodium ion levels. My PDoc can’t understand why it went up so fast within 8 hours and he’s not overly enjoyed that I was discharged from the ER without his first being consulted. The levels stay low then bounce up then drop again. I start taking the salt tablets and living on Gatorade as per instruction. I meet with my PDoc a week later and he says, “What are we going to do about this?” I just laughed and said, we’re flushing the Trileptal down the drain and forgetting about it because I’ll be damned if I’ll take a drug to help “control” my illness while having the possibility of hurting or killing me in another manner. He agrees. I go back in about 7 days for one more last ion check…all is fine.
I return to work and give a tearful but heartfelt apology to all for the mean witch behavior that had been emanating from me like evil and they all say they understand. They’ve all either been on meds or have family that is on meds, so they’re very cool about it. I apologized to more people that day than I did in one of my AA steps. But the wonderful thing is, all the people accepted the apologies. So this article in a way ties into one of my other articles, “Look, Act, Seem.” When on the wrong meds, I guess we DO look, act and seem Bipolar or crazy.
Plus it reaffirms my constant preaching about how we are all unique individuals and the miracle med for you may not be the other for someone else. I know many on Trileptal who consider it their lifesaver. For me, that was not the case. I have more problems with my manic side and oddly enough, most anti-mania drugs either increase my mania or lead me down the road to the walking dead. The latter of which I cannot abide by, as I need to be a highly functioning part of society, but most importantly, for myself.
**Disclaimer: any typos, grammatical errors should at the very least be overlooked mainly because I have no editor, spellchecker isn’t foolproof and as usual, my mind works much faster than my fingers. **
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