The Epic Quest for a New Prescriber

At my last psychiatric appointment, my prescriber of nearly 3 years (an awesome advanced practice nurse) informed me that she’s retiring – and the community mental health clinic where I’ve been receiving care isn’t hiring a replacement. There wasn’t any offer to help me find a new prescriber or set me up with one. She just gave me a list of numbers to call, and sent me on my way.

I knew I should’ve started the search immediately, but I was stressed out by the idea so I did what I do best: I procrastinated. I got distracted. I focused on just about everything else. To be fair, “the incident” happened soon afterward; I needed time and energy to recover from that. (Things are going well, by the way, update pending.)

Two months have passed.

Somehow my lamotrigine & clonazepam prescription refill cycles got de-synchronized, so I’m in a kind of weird situation. I used the last lamotrigine refill a few days ago; “additional refills require authorization.” I have 26 full doses left, including today’s. There’s still one more refill on the clonazepam.

So it’s crunch time. I need to find some way to refill these medications – preferably before I run out or resort to cutting pills in half. I honestly fear for my life if I have a disruption in access to my meds – if not my physical life, my ability to continue my activism and maintain healthy relationships. Perhaps more importantly, I fear losing the ability to do the things I need to improve my life – such as completing my degree, finding a job that pays a living wage, consistently functioning well in that job, and learning how to keep my home from becoming an unlivable nightmare. Even more importantly, I fear losing the ability to take care of myself, which includes the ironically (read: cruelly) daunting task of accessing and engaging in treatment.

These fears are among the most potent triggers for my worst depressive symptoms.

Oh, and by the way, my state just cut funding to community mental health. Clinics are closing or cutting whatever (whomever) they must to try and stay afloat. My current clinic no longer serves clients with private insurance, and it had to let go of its front desk staff.

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Star Trek: Next Generation characters Picard and Riker both facepalming. The text reads: “Double Faceplam. For when one facepalm doesn’t cut it.”

So, yesterday, I began The Search. My counselor (who helps me with behavioral approaches to wellness) had suggested that my primary care doctor could possibly authorize refills, so I called his office. They said he “might” be able to, “depending on [my] situation,” so I made an appointment. I’m hoping he can authorize a one month supply of the lamotrigine, and if necessary I can return to him for a three month supply of both medications. (Clonazepam is a controlled substance, so any ‘new’ prescriptions not filled within 30 days expire and need to be reauthorized – at least in my state.)

Even if my primary care doctor can help me, seeing him for psychiatric consultations is not sustainable. I don’t have, nor do I anticipate developing, the rapport I’d need to literally trust him with my brain. I need a specialist who really knows what they’re doing, especially if and when it becomes necessary to make adjustments to my medications. (Which may be soon, I’m still trying to figure out to what degree my current problems can be addressed through music therapy and changes in behavior, vs meds.)

Ideally I’d like to switch to the other prescriber at my current clinic, whom Fox has been seeing and seems to like. If not her, perhaps someone at another location in the same agency – surely that would provide some consistency of care, right? I called the intake office; the person who answered seemed surprised I hadn’t been referred to another prescriber. “Well, you might want to call the other numbers on your list, because we’re currently scheduling for September.” “September?” “Yes.” I hung up on them.

I started making some additional calls. Bad number. We don’t do that. We’re not accepting new clients. We’re currently at capacity, but may be hiring someone, you can check back.

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My to-do list item on Habitica.com with several steps checked, reflecting the efforts I put in yesterday.

There are several additional numbers on my list, but most of the clinics are in urban areas that may be … inconvenient … to access. Middle class suburban snobbery aside, I anticipate that these locations are even more likely to be “at capacity” or otherwise struggling to serve clients for whom they’re the only choice.

So I’m gonna try calling intake for my current clinic/agency back, see what they can do for me. (I realized later that September is only about a month and a half away.) Hopefully my doctor can set me up through August, maybe September as well; if there’s any interruption in my access to meds it will hopefully be short enough that I’ll be okay. And I’d rather have this set as a backup in case my doctor can’t help me and/or I can’t find a prescriber elsewhere; the longer I wait to make the appointment, the later it will be and the more likely this is to become devastating.

I forgot to refill my prescriptions until I ran out – of course on the day I was running late and had to rush out the door. I tried to put in the refill request for the clonazepam first, but was unsuccessful; somehow my prescriptions got de-synchronized so I was out of refills with that Rx number and I didn’t have the new one to put in. I was in crazy anxiety rush mode, so I didn’t try refilling the lamotrigine – even though it had 2 more refills with that Rx number.

I asked Fox to go to the pharmacy for me and he did, because he’s wonderful. He said (they said) they didn’t have anything in the system for me. I was tabling at a pride event and he had to leave for work and it was Sunday, so there wasn’t really any opportunity to follow through on anything.

On Monday I realized I should’ve tried to refill the lamotrigine, better to have one of my meds than neither, right? That was no problem, but I had to speak to a pharmacy representative to deal with the clonazepam. The person I talked to at the pharmacy had an irritating tone to her voice and was too nonchalant, like there was no problem with them not having the information necessary to make sure I have access to a medication that keeps me alive. She didn’t even try to be polite like saying ‘sorry’ – but she did offer to fax my prescriber. And she explained that the clonazepam prescription had expired because it’s a controlled substance, so it has to be filled within 30 days.

I walked to the pharmacy with my inner voices screaming, an irritable mess, barely holding myself together. By the time I got the lamotrigine my ears were ringing and my eyes were so full of static everything was in a darkened haze and I couldn’t think straight and everything felt completely WRONG. That was after missing one dose – and it’s not even that high a dose. I took the dose – better to at least take one of my meds, right? and everything cleared within minutes. The difference was noticeable to Ron over the phone.

I had to play phone tag with my prescriber for a couple days, but I was able to refill the clonazepam today. I didn’t notice as much as an effect when I took it, except that maybe I’m a bit calmer? And I was rather sleepy, I attributed it to waking early from a bad dream, but the medication is known to make people drowsy. Ron seemed surprised I’m able to function at all taking [my dose] of it every day.

To be honest, between what ze’s been telling me about it and what I’ve read online, I’m a bit wary about staying on the clonazepam. Apparently it’s habit forming and it’s better not to take it for extended periods of time. But my prescriber added it for a reason – I think because even with my mood stabilized I was still struggling with anxiety. And I don’t know if I wrote about this yet, but my prescriber is retiring, so I need to find a new one within the next month or two. I’d rather not change my meds until I’ve developed a good rapport with the new prescriber.

So, yay, I’m back on my meds! I anticipate that going a day without lamotrigine and two days without clonazepam will have thrown my levels off; it might take a while for them to get back to normal. And I’m a bit shaken by how profound my (withdrawal?) symptoms were before I took the lamotrigine. I’d come to accept that I’ll probably be taking these medications for the rest of my life, and I’d rather do so consistently than risk going back to how things were before I started taking them. Still, this was a rough reminder of how dependent I am.

Fus Ro Dah!

Since writing my last post and looking at lists of Lamictal/lamotrigine side effects, I’ve done a 180 and no longer feel safe taking my medication. Part of me believes it is a lot easier than confronting the APN about her decision to have me stop taking the medication. Part of me believes that I’ve been experiencing side effects the whole time and either ignoring them, not attributing them to the medication, or acknowledging them and attributing them to the medication but refusing to admit that maybe this isn’t the right medication.

All of me is angry at the APN, psychopharmacology, and the entire “healthcare” system: all doctors, their administrative staff, and especially managed care… I want to say I know it’s irrational, but is it, really? My blood pressure and heart rate are high and that’s set off some alarms regarding the medication… but maybe it’s due to the stress of trying to access medical care!

There isn’t really anywhere for this anger and the accompanying destructive urges to go. The APN’s office is closed for the federal holiday, so the earliest I might be able to talk to her is tomorrow. I have too much other stuff on my plate to waste time trying to get in touch with someone as flaky and dismissive as her! Verbally abusing anyone else would be mean and probably backfire. Physical acts of aggression, homicide, arson, etc. would take way too much effort. I’d rather play Skyrim. Shouting at people in that game is a lot more satisfying, and if it isn’t enough I can set them on fire with my mind.

So I’m just fed up with the whole thing and the thought of swallowing their b.s. in the form lamotrigine dispersal tablets makes me sick! I checked, online sources state that stopping lamotrigine without slowly reducing the dose first is safe for people who are being treated for bipolar, but not epilepsy. (do NOT take this as medical advice! Always talk to your doctor before stopping a medication.) Given the alternatives, I’d rather say “fuck you!” to medication and harness the energy from my anger to be awesome at my classes than keep taking something that may be making me sick.

There is a quiet voice in the back of my head saying that maybe it’s the therapeutic effects of the medication that have helped me get to this point. But my symptoms haven’t been much better than before I started taking it, and I’m inclined to attribute the ups and downs to the circumstances of my life. I can’t tell if it’s making a difference, so maybe it’s not. “There’s no point in taking it just to take it.” Right?

I’ve been wasting too much time and energy on this. There are about a million better things I could be doing!

Dismissed

I had another appointment with the APN on Friday. She took my blood pressure – which was a bit high, both for me and based on the health guidelines I’m aware of – and said it was “fine.”

Then she asked how I’ve been. I told her about being tired and unmotivated to do anything; sometimes I don’t even feel motivated to play Skyrim. I tried to put it in the context of everything that’s been going on: the stress of the holidays and then everything just stopping. I told her when I’m very depressed there’s less anxiety because I don’t want to do anything so there’s nothing to be anxious about, but when I’m less depressed and starting to want to do things I feel anxious about them. (To be honest I’m not sure that’s entirely true. I experience different kinds of anxiety. But I didn’t express this to her.) I also told her about the ominous voice twisting all the imagery in the guided meditation into things I found threatening. I told her I’m both excited and anxious about my classes starting next week: excited because I’ll have some structure in my life and anxious because of the responsibilities. (Not to mention my social anxiety.)

As I was talking about this stuff, she was making notes on the computer (facing away from me). Then she looked back through her notes from past appointments and the information I’d provided in the intake paperwork before our first meeting. She weighed me and told me I’m a candidate for sleep apnea. She told me to go get blood work done so she could see if there is a problem with my thyroid or something (past blood work has ruled that out, but I haven’t been able to show her the printout to prove it). She also called a sleep center for me and handed me the phone, basically forcing me to make an appointment for a sleep study.

Okay, I’ve been dragging my heels, I can kind of understand her being a bit heavy handed. But the next thing she did utterly terrified me.

She told me to stop taking the Lamictal/lamotrigine. She said I’m “sensitive” to it and it doesn’t seem to be helping. “There’s no point in taking medication just to take it.”

That’s it. No plan for slowly reducing my dose over time to minimize withdrawal symptoms. No concern over what effects suddenly stopping Lamictal might have on me. Granted, I’m only taking 75 mg, but we’ve worked our way up to that dose very slowly. If I’m “sensitive” to it, doesn’t that increase my chances of being “sensitive” to suddenly not taking it?

I honestly don’t know if it’s helping. Maybe it isn’t. Maybe it’s wreaking havoc on my central nervous system and I should stop taking it immediately. She didn’t explain why she thinks I’m sensitive to it, and gave a very simplistic explanation of why I should stop (which suggested she views me as medication-seeking). Her tone sounded dismissive to me, so I didn’t feel comfortable asking questions. I couldn’t think quickly enough to formulate them and felt like she wouldn’t listen anyway.

Maybe it is helping and my depression would be a lot worse without it. I feel like she’s not taking my life circumstances into account. I was doing great up to the wedding, then suddenly all my loved ones had gone back to their own lives, nothing meaningful had changed, and I no longer had something important to work on. I couldn’t sleep for a week or so while Mom was having work done on the roof. Then the holidays were a blur of excitement, socializing, not getting enough sleep, and thinking my godmother was going to die. Then, once more, everyone left and everything stopped – except worrying about my godmother. The floor dropped out from under me – and my pending courses for the Spring semester are looming over me.

The courses are the thing that has me the most concerned about stopping my medication. I’d like to have a bit of stability going into such a big lifestyle change; the last thing I need is unpredictable changes in my body chemistry and mood at the same time I’m going into a frightening and challenging situation. The last time I took these courses I had to drop them because they were triggering self harm and suicidal urges. I don’t feel safe trying to take them again without some kind of safety net. (I should probably talk to my instructors about this.) At least taking medication is something I’ve been able to do with some consistency; I feel like I’m doing something to help myself!

I suppose I could possibly enjoy the same effect from continuing to take my supplements (omega-3, vitamin d, and a vitamin b complex with folic acid and vitamin c), but I really don’t want to give up on the Lamictal just yet. Wakana has been urging me to take medication for so long (since before I started this blog), I hate the idea of finding that yet another one doesn’t work. I don’t want to start from scratch again…

During the meeting with the APN, my mood went from 1) low energy, depressed and a bit anxious, to 2) slightly higher energy and a bit irritable, to 3) more depressed, frustrated, and wanting to cut myself. She ended the appointment after telling me to stop taking the Lamictal; she didn’t even ask if I had any questions or concerns or anything else I wanted to talk about. I feel like she thinks I’m not really depressed or only mildly depressed and that I’m being lazy.

(Much of our conversation was her giving me advice: to make healthier food choices, move around more, make a schedule for myself, and give myself a to-do list with simple tasks that help me feel good. Some of these are lifestyle changes I want to make anyway and think would be helpful, but in general it sounds like stuff laypeople say to people with depression because they don’t understand it.)

I left and made sure I have future appointments pre-booked, but thought about not coming back. In an ideal world I would find a better psychiatrist, but with my insurance that would be a nightmare. And I’d have to start the whole medication dance all over again! When I was halfway across the parking lot I thought about going back to ask about reducing my dose slowly, but decided I wanted to consult with someone before trying to advocate for myself. I had just utterly failed at advocating for myself and was in no state to do so successfully.

I talked to someone I know who works with adult psych patients and has bipolar himself, and with his wife who has a good amount of medical knowledge – including potential effects of different drugs and what various symptoms might indicate. Together they helped me decide to continue taking my current dose of the Lamictal until I’m able to talk to the APN again. They encouraged me to talk to Wakana about it and have her talk to the APN as well. My friend with bipolar also made an important point: my insurance might not approve the sleep study right away, or in time for our next appointment, or ever. I can’t wait, untreated, while they bathe in red tape (as I have been for my tooth – brief update: I have an appointment for a periodontal consultation and another to get a root canal).

At the very least, I want a better understanding of her thought process. I want her to sit down and look me in the eye and answer my questions until I feel confident in whatever course of action she prescribes. Is that so much to ask? If I have to go off Lamictal, I feel much safer reducing my dose slowly with a plan we’ve come up with together. If possible, I intend to have Fox there with me. He’ll be there for my future scheduled appointments, at least!

Side Effect?

I’m having an experience that’s new since I’ve been taking Lamictal/lamotrigine, possibly since my daily dose was increased to 75 mg. It happens when I’m very tired and close my eyes and drift off a bit: if there is a sudden sound, I see an explosion of small white lights. Kind of like fireworks. The sound doesn’t have to startle me, just bring my attention back to the present. The phenomenon isn’t painful, scary, associated with a change in mood, accompanied by physical symptoms/movement, or anything else that would suggest it is a serious concern. It’s just… different. I’m not sure whether I should be concerned about it, but I plan to bring it up the next time I talk to my advanced practice nurse.

Good to See You… but I Wish You Weren’t Here

I just got back from my fourth visit to the APN. I told her the Lamictal seemed to be helping; I’ve been less depressed, my lows haven’t been as low, and my mood is more stable – even with the stress of adjusting to Fox’s new job and wedding planning crunch time and health issues, etc. She decided to increase my dose to 50mg daily and encouraged me to find things to do that would give my day structure and social opportunities.

Someone else was coming in for an appointment as I was making future appointments to see the APN once a month; after a short time I noticed that person was waving to me. It took a few moments for me to recognize her: a former classmate! She started asking how I was and when I was done making my appointments she came over to give me a hug. I was glad to see her but concerned: she seemed stressed and anxious and was clearly going through a rough time – otherwise why would she be at a community mental health center? I wanted to ask questions to show interest in her well-being, but I didn’t want to ask anything that might make her feel uncomfortable. And then she had to go in for her appointment.

On the one hand it was kind of encouraging to know I’m not the only one from my school / program needing to take some time for self-care. It’s kind of normalizing? And I’m glad she’s able to access at least some of the help she needs. I like my APN and I’m pretty sure that’s who she was there to see; I feel fairly confident that she’s in good hands.

On the other hand, I’m kind of shaken. I wasn’t expecting to be in a peer social situation with someone from school. We’d had some opportunities to bond as classmates but I see her more as a “friendly professional acquaintance” than a friend. I’m used to doing everything in my power to hide my mental health issues from friendly professional acquaintances; now one has seen me at a community mental health clinic! I don’t think she’d tell anyone – just like I’m disinclined to tell anyone who might know her – but it’s still awkward!

And my first response is to try and figure out what I can do to help her. What would be appropriate to say to help her feel more comfortable? How can I reach out to her to try and offer some support? I need to be careful how I proceed so I don’t risk outing her. Maybe I shouldn’t even be writing about this!

I guess it’s good that I’m so compassionate. But I need to think about how I feel and what I need. I kind of needed to be in and out of my appointment without unexpected socialization. I also need to socialize with peers other than Fox and the all-too-occasional rendezvous with other friends. I kinda want to reach out to her – “Maybe we can meet at a cafe or diner that’s convenient for both of us? Are you free during the week?” And I kinda want to hide in my shell, try to pretend this didn’t happen.

Psychiatry Strikes Back

I had my second appointment with the APN on Friday. It was at 4:30pm and I was a little late so I guess that played into it because it was near closing time but… she seemed very rushed. The hospital where I’m trying to schedule a sleep study needed more information and had called her, so she tried calling them back at the beginning of our appointment. They were probably closed for the day, so she left a message asking them to call her back… but I have no idea whether or when both sides will be available to talk in real time. She doesn’t seem to have time outside of appointments with clients to do anything relevant to their cases; I think that’s stupid and inefficient and a symptom of bigger problems in the U.S. “healthcare” system. But I digress.

I showed her the self-report measure she’d given me to track symptoms such as depressed mood, mood swings, irritability, food cravings, anxiety, sleep issues, difficulty doing things, and physical symptoms. I’d marked most items somewhere from “mild” to “severe” on most days. She asked questions about how I’ve been and family history of “mood swings” and filled out a form on the computer as I was answering her. She cut me off in the middle of trying to explain my family history, so she doesn’t have all the relevant information. At first she thought I’d never been on medication before; this freaked me out because I’d spent so much of our first appointment telling her about my experiences with the generics for Wellbutrin, Lexapro, Zoloft, and Buspar. I had to tell her a lot of the same information a second time. But she didn’t have any time to glance through my file before meeting with me, and there’s no way she could remember my specific case from meeting with me once a month ago. So I don’t hold it against her, personally … I just find it a bit difficult to feel safe working with someone under these circumstances. (And, well, she could have worded things a bit differently.)

Lacking the results from my blood work (I can’t find my copy and the doctor’s office has been closed every time I’ve called to have them faxed to the APN) and sleep study, aware of the problems I’ve had with medications in the past, and faced with some fairly severe self-reported symptoms, she said she would like to try putting me on Lamictal. I’d never heard of it before, so I asked what it was. It’s an anticonvulsant typically used to treat epilepsy but also bipolar. She said something about a possible rash and it takes a while to start working and you have to work up to the therapeutic dose slowly… at the time, it all sounded fairly terrifying. I’m not sure exactly what I expressed, probably a mix of anxiety and confusion, so she wrote the name of the medication down for me, told me to research it, and offered to meet again “as soon as possible.” Session over. I’d wanted to ask if she could refer me to group therapy for people with depression and anxiety, but there wasn’t any time for it.

I asked the receptionist for an appointment as soon as possible and she said the next available appointment is on September 26th! Another month. I … I can’t even comment on that. Another month before I even get to find out whether Lamictal might work for me … or I might be deathly allergic to it. Another month before I can even hear the name of another medication that might be worth considering. Hell, another month before I can ask her why she thinks it’s worth trying!

The receptionist made an appointment for me on the 26th, but also made a note to contact me if anyone cancels between now and then. I thought that was very considerate of her. It’s the same place Fox and I are going for our marriage counseling (which has been quite effective), so I can also check in with the receptionist before and/or after our weekly appointments. I appreciate her willingness to take that extra step to help me out. As frustrated as I was at the time, I also appreciate the APN encouraging me to research the medication instead of dismissing my concerns.

I haven’t been able to find anything particularly useful about Lamictal online, just a terrifying list of side effects. Most of the psychological side effects have become the norm for me, so I’m not too worried about them … I’m kind of “damned if I do, damned if I don’t” in that department. The thing that concerns me the most is that the online sources I’ve found so far claim Lamictal has only been found effective in preventing episodes of depression or mania, not treating current episodes. I really don’t want to take something that has the risk of adverse side effects if there isn’t any evidence that it might help me.

A friend of mine who has bipolar and works in a mental health setting told me that Lamictal is one of the bipolar medications that have been monitored (and found to be safe enough to continue using) the longest. It’s considered to be safe and effective, particularly for treating depressive symptoms. The severe side effects are very rare, so it’s unlikely I’ll experience them. Basically, I’d be crazy not to give this medication a try.

My friend also made a very good point: I’m not going to be able to have a productive, in-depth conversation with the APN. If I want to know something about Lamictal, I have to do my own outside research. I have to make my decision on my own, before I meet with her again. I already know the answer to the question, “What do I do if I get a rash or experience other severe symptoms?” – go to the emergency room. She won’t be available whenever it happens; I’ll have to wait a month to meet with her. So when I do talk to her, I need to ask the one thing I can’t get answered anywhere else, in order to make the best use of our limited time.

I’m going to ask her what the plan is for getting me started on the medication and adjusting the dose to find the one that’s effective and safe for my body. That way, we can work together to create one… or I can at least hear her thoughts and have a basic idea of what to expect. I need that in order to feel safe working with her.

If you’ve taken and/or know someone who has taken Lamictal, would you recommend it? Anything I should be aware of?

Can you recommend any resources that might help me make an informed decision?

Any thoughts about navigating the system?