Finding a Positive Experience- or, New Psychiatrist

[Content: summary of improper/abusive medication practices on a minor, detailed descriptions of a Psychiatrist appointment.]

I had my first truly positive experience with a psychiatrist. I don’t know for sure that it’s him, the facility he works out of, or just that my needs and his techniques lined up. But I do know that I wanted to share what happened, especially in light of the number of horrible or even traumatic experiences I’ve had with others in the past.

When I was a kid, I was medicated and medicated badly. It seems like every med that came out, I got tried on, in a wide range of uses. Indeed, some of the things I was medicated for was caused by other medications. very rarely was my body allowed to detox from one medication before starting another. And every visit- once every 3 months- my medications would change again.

I have a long long list of things I will not ever allow that is written in my Mental Health Advanced Directive. Some of the things were given to me as a form of long term chemical restraint on the part of the doctors, particularly after my childhood in patient hospitalizations. Some were given to me based on appointments where the doctor fell asleep during the appointment, and then would write down notes that could only be explained by falling asleep and dreaming while my mother was talking. That is my mother’s belief of what happened, and she saw the notes. All I know is I sat in the appointments and watched her nap through my mother’s talking.

I was on so many medications that I cannot list my past meds completely. I can list a few. Sometimes I can even check boxes off a list, but even then I miss some. I know I gained 60 lbs in 3 months at age 12 from Depakote. (Even when I was Bulimic in High school, I never have been able to get below the weight I gained then.) I know that on Risperdal, I became violent seemingly out of no where. I know that on multiple occasions, Seroquel was used to increase compliance and ease of handling by staff- and the vast majority of the other young people seeking treatment at those places that prescribed it were on it as well. Prozac made me manic as an adult, and made my compulsive behaviors more difficult to control- and I was house bound at that point. The list is seemingly endless.

All of this in addition to the disrespectful and disregarding attitudes and actions on the part of the people prescribing. Don’t get me wrong, I had some okay-ish Psychiatrists once or twice. I even had two who *wanted* to be helpful to me. One of them advised taking me off of medications completely when I was 14, upon which time the behaviors my mother found most concerning either diminished or vanished.

(A side note: My mother, not being a Psychiatrist and living in a rural area, followed advice on the med side of things. Over time her records and increasing advocacy skills lead to my getting to the doctor I had when I was 14. Those same skills also helped her teach me advocacy skills.)

But the vast majority of my psychiatrists were not respectful and wouldn’t listen to my internal experiences and motivations for the behaviors they were trying to medicate away.  I don’t remember having someone talk through their process, take my input seriously, or give me options that were tenable. I definitely don’t remember a Psychiatrist who  was comfortable with leaving behaviors I didn’t want or care to treat alone.

As a result of all of this, I have what I think is a pretty well earned fear around seeing psychiatrists. For several years, I’ve been having my general practitioner manage my medications. (I’ve been back on meds off and on since I turned 18.) However, my other supports indicated that seeing a psychiatrist was a good idea and Medical Assistance threatened to drop me if I didn’t try to find one.

We started looking for a Psychiatrist. I was looking specifically for someone with experience dealing with Autistic adults and anxiety. The nearest we could find with sufficient experience was the Merck Center in Pittsburgh. My Case Manager helped me and my mother do the pre-visit medical history and needs paperwork. At first I was concerned. A number of my behaviors that are not things I was looking to treat were on the list as check boxes, while other things I had no idea how frequent they were.

On February 17th, I had my appointment. I was scheduled with Dr. Hudak for that morning, and I took my mom with me. They had used my papers to figure out which of their doctors would be most appropriate to my personal needs. This alone is an improvement over many of the programs I’ve gone through where case load determines your doctor, not specialty.

I bring my mother to these appointments for a couple of reasons. She functions as support staff, where she helps navigate administrative issues, pick up on cues and behavioral aspects of people who are new to me, and helps out with remembering when and how things happened. But she’s also there because, should I become incapacitated, she will be the one needing to know what I want as far as treatment, accommodations, and other needs.

The waiting room was plain, and the unfamiliar check in process was a little nerve wracking for me. I was pretty oblivious to the people there, as my fears about the appointment made it hard to observe there. However, my mother says that she found everyone helpful- which seems familiar- and that when she was observing the other people there for services, no one seemed anxious. I don’t know how often you’ve had a chance to sit in a Psychiatric waiting room, but they are usually full of worried and anxious to be there people.

The doctor came out to get me, and got confirmation from me that I wanted my mother in the actual appointment with me. Then he lead us back to his office. I noticed a lot of books on OCD, Anxiety, and ASDs on his book shelf. That was comforting to me. My mom found his office to have the right balance of personal vs professional to make him seem like a real person.

He was definitely very interested in my internal experiences of my anxiety, and worked hard to understand how I was communicating that inner experience of it. He didn’t disregard or shoo away my internal experiences, which was a pleasant shock for me. I’ve had a lot of doctors- even medical ones- disregard my internal experiences to focus on external behaviors and evidences, and as a minor focus on other people’s reports on my behavior.

He addressed all of his questions to me, unless I then asked my mom to elaborate on a point that I couldn’t remember the details of or that I was having a hard time putting into words. He was very good from my perspective of understanding and negotiating that she was there as my support staff. My mother felt that he was good at asking her appropriate questions, and felt that he listened to me well.

What I appreciated- and what some  people don’t like- was that he was excellent at talking through his process with me as he goes. This is one of the key access needs I have with any doctor, and I felt that he was very good at it. My mother’s impression of this aspect was that he was thorough and that his process reflected that he was actually listening to my input. It was the first access need I remember mentioning (other than explaining a stim toy) to him, and one that he seemed pleased to hear as it is the way he works. I understand some people don’t like this feature in a doctor, but it reassures me that I am being well informed as well as that the doctor is considering my remarks. It also makes me feel more confident in the outcomes of an appointment.

Something that I didn’t fixate on but that my mother has highlighted to me as I was working on this entry was that he was very direct about wanting to meet my needs. He asked about what there was he could do to make me feel more comfortable in his office, especially in light of my fear around Psychiatrists. He made sure he was aware of what accommodations I might need, as well as the role of my mother. He made sure to let us know that we should feel free to communicate needs in the future as well.

When it came time to make choices about medications, he talked about his thoughts on the issue, as well as how things would work with my other medications. When I made it clear that it is my anxiety, not so much the other things, that I am seeking his help with, I felt that he was very supportive. He gave me two medications to chose from. One had a greater chance of success, but might have side effects. The other has fewer side effects but some people don’t find that it works well enough.

Because of the history I have with horrible and unexpected side effects, I chose the second one, which is called Buspar. (It’s been okay so far, but this post is about the visit itself, not the medications.) He was very good at answering my questions about the medications. He also made sure to assure me that if we end up unsatisfied with the Buspar, the other medication is still an option.

When I asked him if it would effect my “twitchies” he told me that it might reduce any that are anxiety triggered, but only because the anxiety would be less frequent. Other wise, I shouldn’t expect to see any changes in the twitchies, which is a good thing because they (both tics and stims) are a part of me that I’m okay with. He was very accepting, I felt, of my wishes to keep my stims and their value as self soothing or self focusing/regulating strategies.

I had one of my stim toys, a mop slipper that is both green and a texture that I enjoy, with me the entire time, and he seemed to have no issues with it that were apparent to either myself or to my mother. She agrees with me that he respected that stims and to some extent tics are a part of myself that I am at peace with and embrace in myself.

After he made sure that all my questions and comments were answered, he let us out and had us schedule a follow up for late April.

Overall, it was one of the most positive experiences visiting a psychiatrist that I can remember.

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10 thoughts on “Finding a Positive Experience- or, New Psychiatrist

  1. i’m glad this psychiatrist was better! i tried buspar for anxiety and couldn’t take it (i think it was the medicine that caused such severe lethargy i literally couldn’t walk) but i really hope it helps you, or that the other med he mentioned will help. i’m so glad you got someone who actually listens and treats you with dignity.

    • I’m having some pretty heavy duty lethargy, but we aren’t 100% sure if it”s the BUspar or if my anxiety was mitigating narcolepsy episodes.

      My mother has narcolepsy without cataplexy, and even before I got put on the Buspar, I was having cataplexic episodes. I do have a history of my anxiety attacks keeping me awake at night, so it’s not unreasonable to conclude that my anxiety, improperly treated, was mitigating some of that. Kind of like how my lactose intolerance was balancing my chronic constipation.

      Compared to meds that have made me lethargic in the past, this is not the ssame kind of head space. other meds- like seroquel- made my head foggy, kind of like having a really bad pain day but without having the pain. Buspar I’m mentally pretty clear headed, but physically exhausted. I fell asleep on the bench at the mall waiting for my mom to pull up to get me today, for example.

      • the physical lethargy sounds a lot like what i experienced on buspar. mentally i wasn’t too foggy but i physically couldn’t move. but it could definitely be other things too.

        • good to know! I’m on a very low dose, and I can’t imagine what my system would do on a “normal” dose. (Doctor seems to get that my brain needs the smaller doses ha ha)

          I’m learning all sorts of things that I can bring back to my doctors from the comments on this!

  2. omg cataplexy! i didn’t know there was a name for that! i’ve always thought of it as my “weird seizures.”
    thanks for teaching me that word. and also yaaayy on having a good doc!

  3. I’m glad you had a positive experience with this guy. Maybe he’s a keeper. Especially as he wasn’t patronizing — i.e. by talking to you instead of your mom — and respectful of your wishes.

  4. Glad you found a respectful-acting psychiatrist, and I hope you continue to be comfortable working with him. I have seen one who fit that description, and listened to me (though he was operating on the assumption that I was bipolar and, yeah, mood stabilizers. etc., really don’t help when it’s autism).

    I know what you mean about the meds list, unfortunately–along with too often having gotten more to treat the effects of others. I am frankly too afraid to even try seeing another one, though I could use anxiety meds if they weren’t so hesitant to prescribe benzos at all here because of earlier overprescription–and have to give you a lot of credit for courage just from what you’ve said about previous experiences!

    I wouldn’t be surprised if anxiety did help make narcolepsy less obvious. That kind of thing is complicated. On a couple of meds that made me fatigued and trying hard not to go to sleep all the time, my anxiety levels went through the roof with my system trying to compensate and stay awake. (Off those meds, the anxiety decreased again.) I would not be too surprised if some of the anxiety might also be a coping mechanism, if there is a narcolepsy problem going on–besides helping mask it.

    One thing I’m not sure I’ve ever seen brought up with Buspar, which I had problems with and narrowed down to that through elimination: trouble with thermoregulation and just not sweating properly, to the point of serious overheating episodes. I didn’t think it was helping the anxiety much, but kept taking it on the basis that it also didn’t seem to be doing any harm, but yeah. I do already have some hypermobility-related problems with dysautonomia more toward the overheating side (the adrenaline overload also causes anxiety, yeah), so I don’t know how likely this is to happen without that added factor. Definitely not a good thing when taking Seroquel, etc., which are known to cause heat-related problems. 😦 I don’t know how unusual it is with Buspar, but I was especially reminded with summer on the way.

    • . . . OMG thanks for those comments about meds and thermo regulation.

      I’m unfortunately not having that issue withh the Buspar. Why unfortunately? Because I sweat too much. I have night sweats bad enough that when I took my last sleep study, they had to redo my electrodes halfway through because I had sweated them off. I got heat stroke this past summer in DC from walking from the metro to the nearest restaurant, and from the metro to Reagan National. we are talking 100-500 ft in the heat. I had to get cool beverage and hide in the air conditioning to do anything.

      Ever since puberty/menarche– when I was on the the most meds- I’ve had heat regulation issues. As a pre-pubescent, it wasn’t that bad. We assumed it had to do with the fucked up ovary/uterus stuff, though considering I do have a permanently fucked up metabolism from over medication it wouldn’t be too far off to assume that I also have a fucked up thermoregulation.

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