This is an update to what I wrote in late 1997 about my personal experience with manic-depression.
Continuing where I left off…I was off medication and things were going fine until around late August or September, 2000. My husband started becoming concerned about me – he thought I was getting a little ‘active’ (for example I was sleeping less and talking very animatedly). Because he was concerned I called the psychiatrist I’d seen during my first illness. It had been about three years now since I’d last seen him, at which time he’d said that it was up to me to come in if it seemed like there was reason for concern; otherwise I didn’t need to.
I saw him regularly over the few months, according to when he had me come back. He suggested psychiatric medication one time but I declined. We discussed ways that might help me sleep. I talked to him in general about what was going on in my life. Looking back I do realize my thinking wasn’t entirely ‘normal’ during that time. In early December I was continuing to get worse and I became quite delusional. On December 6, various people talked to my husband on the phone about my condition. He took the next day off and took me to the psychiatrist himself in the morning.
When my psychiatrist saw me, he had a new concern as well as the Bipolar disorder. He thought I might well be having some sort of ongoing continual epileptic seizure activity, based on what he saw. The best description I can give is that I was shaking a lot, quite frequently and quite violently. From my point of view this wasn’t as involuntary as it probably appeared; it was part of my delusions that this was how I was supposed to be behaving. Anyway, he was very concerned because a period of continual epileptic seizures can cause brain damage. So he wanted me to have an EEG done. This a trace of brain activity which reveals whether someone is having epileptic seizures or not. It took a while to persuade me to have the EEG done (I was there for hours while they tried to persuade me).
It was a very difficult day for me in a variety of ways. (Not that it was easy for the people who were with me, either – in retrospect I can see that). As far as I was concerned, no-one on that day explained to me that they were concerned about me suffering brain damage if they didn’t intervene medically as soon as possible. I didn’t understand why I couldn’t just come back the next day for them to see whether I’d improved. But they said, if I didn’t have the EEG trace done they’d hospitalize me. I truly don’t understand why they didn’t explain the urgency to me. Despite being delusional I was aware enough to be in despair that basically the thing I had most hoped to avoid by having my own psychiatrist this time, happened again! In other words, I was in a situation just like the first time I was most ill, in which there was no-one present who was willing to try to get the key facts across to me, in a way I could hear, that day. My husband told me later that he thinks they did tell me but I was incapable of listening and/or understanding in the state I was in. Personally I don’t think I was and it made things much harder for me that day, that from my point of view, no-one would help me understand why they felt they had to intervene the way they did. Anyway, after a few hours my psychiatrist and his neurologist partner and my husband left me alone in his office to think about whether I’d have the EEG (which they happened to have the equipment to do in their shared office space) or whether I’d continue to refuse in which case they’d hospitalize me that day.
The sinking realization that I was quite possibly heading towards a situation where I’d be powerless again – just like my first hospitalization – had hit me earlier that morning, as my husband was driving me to the psychiatrist’s office. Once it occurred to me I sought reassurance from him that that wouldn’t happen, but he wouldn’t provide it. I can see why, in retrospect. And sure enough, a little later there I was in the office given the ultimatum, have an EEG or we’re hospitalizing you.
As I said, my husband, my psychiatrist and the neurologist had spent a while trying to persuade me to have the EEG, without success. Finally they gave up and left me alone. I suppose they thought they’d said all they could say. Although I still don’t understand why they didn’t try harder to convey the reason for the urgency, to me. I don’t even remember them telling me, once, why it was urgent. And I do remember the part of the day before I was medicated, quite clearly, in general.
I was very angry and upset about the ultimatum. It was hard not to focus on how unfair I felt that was. But nevertheless, when they left me alone, I did think about the situation I was in and tried to decide what to do, with all that was in me that day. I prayed and thought and I saw that unless I was willing to be hospitalized, I’d better have the EEG. (They probably thought I wasn’t capable of figuring anything out that day, but I was…) There was no way I wanted to be hospitalized. So that was that and although I wasn’t at all happy about it, I gave in and said I’d have the EEG. In preparation for it, the psychiatrist told me I needed to take Xanax so I’d be still enough to have a decent trace done (remember, I was shaking). I don’t honestly know if I could have totally stopped entirely but as I said, I know I had some control over the extent of my movements.
I took the Xanax and had the trace which evidently did show seizure activity. I was given more Xanax after the first dose; it was very sedating and I think it caused some short term memory loss too, so I have only a vague recollection of the 12-24 hours after I took it. I had a meeting at church the next morning – which was to do with managing my relationships with people at church. These, of course, had been significantly affected by my condition. Looking back I’m annoyed that I had that meeting that day. It would probably have been best not to have it in that partway sedated condition and when I was that delusional. But anyway, I don’t suppose that much matters now.
I was sent home after the EEG trace with anti-convulsant and and anti-psychotic medication. The anti-psychotic medication made me feel horrible and I begged to be off it; as a result, after a couple of days I was on the anti-convulsant medication only. It was a new medication called Trileptal, similar to Depakote. It so happens that anti-convulsants treat both Bipolar disorder and epilepsy, so I was given just the one medication to address both diagnoses. I was much better, relatively speaking, (i.e. no more activity related to seizures and way less delusions), in just a few days; I personally believe the drastic intervention had as much to do with it as the medication. No matter how delusional I was, it was clear to me I hadn’t wanted to end up powerless again. With rights and choices I took for granted, taken away, again! And so I know that – whether or not I had a complete understanding of how ill I was – on some level I had been decisively forced into the realization that all was not well. And not well was not how I wanted to be.
Anyway, I was not happy with the way my psychiatrist handled that day or with subsequent visits and phone calls and follow-up. . In what turned out to be my last visit to him he had to ask me what medication I was on and what dose because he didn’t have access to my records. (Because the office was rearranging the records, so he said. But surely he could have retrieved mine first.) At one point during the visit he stood up behind his desk and said “Don’t play games with me young lady!”
I didn’t need that. (And, for what it’s worth, my husband would look back and agree in questioning his ability to treat me effectively). So, in January I decided I had to find someone else. This was all quite difficult because whatever my true motive, I know it must have appeared like resistance to appropriate medical treatment for my condition. I went with my husband to visit another psychiatrist who was recommended to me by a friend who is a doctor. That visit was a low point for me. He said he’d have to change my medication because the one I was on was simply too new. I felt it was working so this made no sense to me! And he said I’d have to see a neurologist as well as him because of my epilepsy diagnosis. I didn’t like the idea of that either and began to realize how the dual-diagnosis could complicate getting effective treatment. I didn’t want to change medication just because mine was ‘too new’, regardless of whether it worked or not. And I didn’t want to end up on two sets of medication, seeing two specialists, since the two conditions overlap quite a bit and are treatable with the same medications.
And he said unfair things in front of my husband (in my opinion), like “Are you just going to go from one psychiatrist to the next until you find one who agrees with you?” I don’t remember how I responded to that, if at all. Perhaps by then I’d realized there was no way I wanted to have him as my psychiatrist and so I’d given up saying much. It was a depressing, discouraging visit. However, he did say at the end – which turned out to be very helpful – “I know a psychiatrist who is board-certified in neurology, if you’re interested” and he gave me his phone number.
Having realized the complexity of being treated with a dual diagnosis I was quite interested to follow up on this. I did go see the other psychiatrist with my husband and it was a very different experience than with the psychiatrist who wanted to change my medication. This one was kind, calm and respectful and I felt he listened to me. We (my husband and I) both felt good about the visit with him and so I switched to him. To this day, he is my psychiatrist. Shortly after I started seeing him he suggested changing my medication to neurontin since I wasn’t particularly better and he had had good experience with that one. I wasn’t convinced about it but I reluctantly agreed to try it (and I’m still taking it as of today)
I’m not sure how long it was until I was ‘back to normal’ again. I think that I was still delusional to some extent, into the summer of 2001. Then, it seems to me I was getting much better as autumn got underway although maybe I was still somewhat on the ‘reactive’ side. From then on, I continued to improve and have been basically “normal” for a while now (I’m writing this in December 2002). Or, as “normal” as I ever am…maybe that would be a better way to put it!
One thing I am very glad about is that I started seeing a counselor soon after I was put back on medication in December 2000 – I think I started in January 2001. I don’t remember my exact reasons – it might have been because I wanted someone to help me communicate better with my husband – so I was looking for someone we could see together. When I’m ill that can be very hard…anyway, however it began, the counselor wanted to see me by myself, mostly (go figure!) He moved out of state earlier this year and I’ve been seeing the person to whom he handed over his practice, since then. Seeing a counselor has been extremely helpful to me. I really wish I’d had a counselor back in 2000 when I was getting ill. I’m hoping that if I have trouble again, my counselor will be able to be that person I needed and didn’t have – someone who will take time to communicate with me, listening to me and explaining things to me with patience and kindness. And perhaps that kind of help will enable me to avoid any more ‘crisis interventions’ which are very stressful, painful and difficult for me and those around me.
Until my second episode I was thinking of my psychiatrist as somewhat of a counselor – since I used to talk to him for longer than the customary 5-10 minutes medication check. But now that I know what it’s like to see a professional counselor, I wouldn’t go back to being without the help of someone who has that training and experience. I now have the more usual arrangement where I see the psychiatrist for meds checks (every three months, at present) and I see the counselor (every three weeks), to talk about how things are going.
I tried to get my records from my psychiatrist that I no longer see. He eventually (after I’d complained to the state regulatory board about him not sending them) sent a few things to my current psychiatrist but evidently he’d lost the EEG trace, which was what I most wanted! This is frustrating because now I can never get a second opinion about the epilepsy diagnosis that was based on the trace. The outward behavior which led to the test being done and then that diagnosis stopped within days of the test and hasn’t recurred. Maybe it doesn’t matter that I don’t have the EEG trace, since the medication I’m on for Bipolar disorder also treats epilepsy anyway. I still wish it hadn’t been lost, though. I would have liked to have a copy of it, at least.
So…that’s the update! At the end of what I wrote in 1997, I said I don’t know what the future holds. I still don’t. I do think I learned a lot during my first episode; perhaps I learned even more during my second. But I don’t know whether what I learned in combination with the treatment I’m receiving, will, or can, prevent further episodes. I don’t know but I can hope…and take one day at a time… 🙂