Alert: psyche and blood pressure meds and chronic kidney disease

I have found out in the past year that I have chronic kidney disease. My levels have been pretty much constant since 2003. The nephrologist has told me that years of lithium use may explain the CKD that I now have. The good news is that creatinine levels and eGFR levels have not progressed that dramatically since 2003. I have been on clozapine since 2008.

I have also found out yesterday from the nephrologist that low blood pressure can be as damaging to the kidneys as high blood pressure. My PCP never mentioned that and never caught it that my levels were too low when I brought in a journal of my blood pressure levels from the last year plus earlier in March 2023.

This serves as an alert to all my friends taking psyche meds and other meds out there. Please double check with your psyche doctor and your PCP about your psyche med impacts and their side effects and other meds (like high blood pressure meds) and their side effects. I would hope this information would be taken into account when we are prescribed certain meds we need for mental and other health stability. Does not make sense that we would have to take a hit on our physical health just to get the right psyche meds.

The more information we can gather the more we can make an informed choice about our whole health. It appears that whole health requires we look at all meds we are taking and be sure side effects are kept to a minimum.

Please keep informed! Please keep well!

Dreams Going Forward

I recently have reduced my prescription of clozapine from 450mg to 400mg a day under the care of my doctor. My dreams have been much more vivid throughout this process probably due to being less sedated and thereby remembering things. I am keeping a log of my dreams and their potential interpretations. This is something I did in my twenties and thirties but haven’t done since. A lot of the dreams include my being pregnant which according to writings shared with me by my therapist may mean a new chapter in my life is beginning. We will see….

I may or may not share my dream work depending on how intense things get.

Irony or Contradiction – Med Impacts throughout the Day?

For many of us with mental illness, psyche meds are part of the package for movement forward from illness into remission. What I am wondering about today is why my anxiety is the worst when I first wake up for that first hour or two of the day?

The main psyche med I take is Clozapine. The other two are Clonazepam and Oxcarbazepine. I typically take an extended dose of the Clozapine at night before bed around 9:00pm or 9:30pm with a smaller dose of Clonazepam and Oxcarbazepine.

Logically I would think that the time I would feel most vulnerable is the time that is the furthest away from when I last took the Clozapine. In other words, after 24 hours I would expect the medicinal effects of the Clozapine to begin to wear off. What I would expect is that my symptoms would be worse (not better) right before bed at around 9:30pm since that is about 24 hours since my last Clozapine dose.

On the other hand what happens is that my anxiety peaks about 12 hours (not 24 hours) after I take the Clozapine. This peak is at about 9:30am the following day. On the morning after the 9:30pm dose at 9:30am or thereabouts is when I experience the most anxiety.

To complicate matters, the time before bed from 4pm to 9:30pm is usually the least anxiety ridden part of my day. How does that make sense if it is almost 24 hours (not 12hours) since my evening dose of Clozapine? Is it just the routine at that part of the day that calms me?

Overall, these time-frames don’t make sense to me. Again, I would have thought that 24 hours after my last Clozapine dosage would be my most vulnerable time? Not my most anxiety-free time? I also would have expected 12 hours since the last med dose to be a stable time? Not when my morning anxiety peaks?

Does anyone else experience a disconnect between when they take their meds and when symptoms are at their best?

Sleep: When is too much of a good thing or not?

When I was in the early stages of bipolar disorder, a gap of 2 nights sleep was a trigger that I might need to be hospitalized for bipolar disorder or go to my sister’s house for in-home care.

Some 25 years later, I find that sleep is also an indicator of how I am doing with the bipolar. If I have interrupted sleep or sleep less than 7 to 8 hours, the next day is a struggle and a warning sign for the next few days to come that things are fragile.

In semi-retirement and as an empty nester, I allow myself more sleep than I normally would. I go to bed around 9:30 or 10:00pm and wake up between 8:00 and 10:00am the next day after several interruptions in the night. I know some people might see this as a sign of depression. I actually don’t. I have come to rely on the good nights sleep with clozapine since 2008. And this sleep generally helps keep me feeling relaxed and less anxious through the day. It is not a cure-all for anxiety, but being well-rested does mean I am less likely to expect the worst in whatever situations cross my path that following day.

I am not tied to the schedule of ten to twelve hours per say. I do get up and go to early doctor’s appointments and the like. I just like being completely exhausted of the need to sleep. If I can put it that way.

Does Anyone Have Information on Loxapine for Bipolar?

I am in the process of looking into a new psyche med. I currently use Clozapine as my main psyche med but it requires a monthly blood test and causes weight gain. I have also been on Clozapine since 2008 and wonder if its effectiveness is waning.

The drug I am considering is Loxapine which is structurally very similar to Clozapine. Both meds are used for schizophrenia mostly but have been successful in treatment of resistant bipolar which is my gig.

Does anyone have stories to tell about Loxapine for bipolar? Or for other off-label uses? Thanks in advance for sharing.

As an update: I talked to my doc yesterday about switching from Clozapine to Loxapine. He indicated it was not a good idea. And while I am somewhat disappointed, I trust his judgement completely. So there will be no switch to Loxapine. I am however still interested in stories of how Loxapine might have helped in your treatment if you have used before?

Thanks to all of you who have reached out here and before.

How long do you go between sessions?

When I first exited the hospital in 2008 after starting on clozapine, I was seeing my therapist once to twice per week. Eventually this developed into a meeting every two weeks and then every month. Now I am on a frequency of every 6 to 8 weeks for seeing my therapist. During this time post 2008 I saw my psyche doctor every month or every two months. Now I see him every 3 months for meds management.

It is important to note that these elongated timeframes happened for me after years of work with my therapist and with my meds. It feels good to move to longer timeframes between visits, but it is true that pre-2008 I used to “play mind games” with myself regarding my psyche visits. I would deliberately schedule doctor’s visits every three months out to tell myself I was doing “fine” when in retrospect this should have been monthly. I was not doing fine and I was on a drug that wasn’t working. In part, this was because I was not maintaining the proper dosage of the meds.

I feel like today I am honest with my therapist and my psyche doc about how frequently I need appointments. I used to have to have a therapy appointment lined up for the next time when I completed a session so as to be able to “see” what was upcoming on the horizon. Now I basically see how I am progressing and schedule a session every 6 to 8 weeks or so as needed.

Any thoughts on your session frequency with the therapist or the MD?

Worklife after Postpartum Depression

This includes work at:

– a local planning and environmental company in 2004/2005

– a major telecommunications company in 2007/2008

– a non-profit environmental organization in 2010 and 2011

– a health services company in 2013

– a nonprofit management services company in 2014.

Work at the local planning firm built upon prior work I did in the community for naturalizing the stream near my home. I served to facilitate the steering committee that was all-volunteer and dedicated to this stream restoration project. My health at this time was still impacted by the postpartum depression. The job was cut short when the principal developed lung cancer and retired and shortly after passed away. Generally speaking, working in the environmental sector proved less stressful than in telecommunications information technology.

A year or two after completing the job at the environmental planner and program manager job, I decided to go back into project management work at the telecommunications company. This was a mistake. The job was highly stressful. At one point I was asked to work over a 70-hour workweek. This was the death knell for my health. Shortly after being up all night with a computer software launch, I began having break-through bipolar symptoms. Within a day, this was full blown mania. I wrote an incoherent email and forwarded it up the chain of command. I was a contractor at the time. My contract was immediately terminated and I was escorted from the building. I was not even given the opportunity to retrieve my belongings. The representative from the contracting agency retrieved my personal belongings and brought them to my house a few days later. The treatment I received there made me feel like I was a criminal and/or dangerous to my colleagues. There was absolutely no understanding of mental illness and/or bipolar symptoms.

Later that year, I was hospitalized for an extended period of time and started on a new regime of meds called Clozaril or Clozapine. It was discussed at that hospitalization that I would perhaps not be able to work again. After an extended stay in the hospital, I began weekly therapy visits and participated in CBT and other talk-therapy protocols. My daughter by this time was almost five years old.

After a two-year stint away from the workplace, I landed a part-time job with a local environmental non-profit. I started working there 20 hours a week and eventually was promoted to 30 hours a week. At this juncture, I was completely upfront with my boss about having bipolar illness. My boss was more understanding than most people. It appeared she was somewhat familiar with the illness. During this time I made many contributions as project manager to this environmental start-up. In addition to making strides on various environmental projects, I helped with the sale of one program to a national management non-profit organization. I continued to work here for about two years but found that interpersonal relations with my boss were such that I wished to leave this place of work. And I did.

From here the story tends to repeat itself. I was hired in 2013 to do software development project management work. This contract lasted two months or less. In 2014, I was hired to do project management in the certifications and educational departments for two non-profit agencies at a non-profit management company. This job lasted about 6 months.

All in all, I found that project management work was too stressful for me. I was not able to divide my time between two major projects I was asked to work on simultaneously. I would tend to work on one major project and let the other slip. Once in 2013 and then again in 2014, I resigned from each position in the project management information technology space within the period of several months. Basically since I started on Clozaril or Clozapine in 2008, I have not been able to stay at a job for longer than two years. And that was part-time work.

From here picking myself up in 2017, I resumed my work as a volunteer in the town where I live. I was appointed to the local environmental sustainability board in the spring of 2017 and served on that board, chairing one committee for a time, until the end of 2020.

All in all, my work history after the extended postpartum period in 2004 has been very inconsistent. I have had to re-orient myself as to what is productive behavior and what is not. I have been very accomplished at volunteering locally and at researching and writing papers that were or have been presented in national and/or international settings. But this work has not been “paid.” I have had to re-direct feelings of being “less than” because I have been unable to keep a paying job.

All in all, I feel like a major component of my checkered job history is due to the fact that bipolar illness carries such a stigma with it. I either have been asked to leave employment because of it or I have left employment early because I was unable to manage bipolar symptoms and worklife at the same time. If there had been some sort of support for mental illness like referring me to a less stressful job, perhaps I could have made a go of it. As it stands now, I have basically given up working at a for-pay job. I spend my time focused on managing homelife and illness and doing volunteer work including my blogging. I also am striving to see if I can get published with my story of bipolar illness. So far the only publishing options available to me are self-publishing.

What about weight gain? Anybody experiencing that?

Asking about memory issues is popular on my blog, so I thought I would start a similar discussion on weight gain.

Back in 1985 when I was diagnosed with bipolar disorder, I was prescribed a combination of lithium and tegretol. There was a five to ten pound weight gain associated with those meds. With a diligence for exercise I managed the weight implications associated with lithium without a problem. As long as I stayed on lithium off and on until about 2004 my weight seemed largely manageable.

Fast forward to 2004 after the birth of my daughter. I never got off my baby weight. Also due to the postpartum depression, I suffered additional weight gain in that I ceased to be motivated to run 4 to 5 times a week. In fact, I am doing well now to get a short walk in.

In 2008, I was prescribed clozapine / clozaril which largely became therapuetic for me but also was associated with a good bit of weight gain. To this day I am 20 to 30 pounds heavier than I want to be. I also want to be walking regularly. In addition to the meds’ impact on weight, I began to eat as a nervous eater and a stress eater. This did not help with the weight issues.

I am hopeful if I can jumpstart myself back into an exercise regime, I can begin to address the weight-gain and the stress eating. Because my daughter is pescatarian we largely eat healthily as a family but portions are too large and snacking is too much.

My Sojourn through Bipolar Illness – Rock Bottom

That said, it is not unusual for medications to become ineffective or non-therapeutic after a certain point in time. It is also true that as a patient I have had to participate in the “laboratory rat syndrome” and try different medications by trial and error and see what works and what doesn’t. This ‘laboratory rat syndrome” is described later in the text.

But what is most important to convey about this time period in my life is that I made a conscious decision to be transparent to my health team including my doctor, my therapist and my family.

It was at this time that I hit rock bottom. As they say in many recovery programs, you don’t really ever reach sobriety or true healing until after you hit rock bottom. This period of three to four years after my daughter’s birth is my rock bottom. I tried several doctors. I tried several therapists. I tried several new types of meds. But none of these worked. At the root of what was going on in hindsight is that I was not being honest or truthful to myself and my support team. I would schedule doctors’ visits every three to four months as compared to once a month so as to “prove” to myself I was healthy and not in need of help. There were times when I felt the drugs weren’t working and I stopped taking them.

This period of sheer and utter chaos in my life finally came to a close when I decided to put my health first. After the lengthy hospital stay, I stopped working altogether and began weekly sessions with my new therapist and monthly sessions with my new doctor. I communicated openly to my husband James, my mother and sister Jane about my health and how I was doing. I became transparent in my place of worship and informed my clergy of my condition. Basically, I decided at this critical juncture in my life that I was not going to lie to myself or to any other person close to me about how I feel. Further, I determined that I am not going to hide my condition from myself or from my support team.

Slowly and very very slowly, after this lengthy hospitalization and move to Clozaril or Clozapine, I began to gain more stability. This I believe is equally due to the meds, my work with my doctor, my work with my therapist and my dedication to illness transparency in my place of worship and in my family and extended family. I do not believe the end of the rock bottom period would have occurred without any one of these four developments: meds, doctor, therapist and transparency.

Further, the end of the rock bottom period did not occur suddenly. There was no silver bullet toward health. But rather, this time of reparation was marked by gradual developments in learning to express my fears for safety, learning to address these thoughts of safety before they developed into full-blown paranoia, learning how to be a mother to my child which was preceded by my developing ability to be a parent to myself. This journey was to take not just weeks or months but years of work.

Initially, my therapist and I met weekly to work through issues of abandonment and replacement child concerns. But what was a complete turnaround for me was when I began to talk openly to my therapist about how I perceive the world. It was at this time that I started talking more openly about how I am drawn toward coincidences, patterns and pattern-recognition. We talked about my fears for safety for my family, my nation and my world. These fears continued to haunt me throughout the process of climbing out of the hole at rock bottom, but somehow just knowing that another person understood what it meant to see the world in terms of patterns was a huge relief and an even more huge release.

For the first time in my life (literally) there was a person who understood my train of thought. I no longer felt that my thought processes were singular and inexplicable and inaccessible. By somehow working with my therapist and my doctor on the intricacies of how my mind worked and how my feelings had been somewhat left behind in the process, the fear that had consumed me for the first three to four years of my daughter’s life was released. Not cured however but released.

By talking about the patterns that I saw, I no longer felt isolated in my existence. Without the isolation, the fears of safety seemed to become more and more manageable. In those years that followed rock bottom, my therapist and I were working on releasing the fear that had been mounting for me as a person not just from the point of birth of my daughter but from a point all the way back to college days at Ivy College where I first discovered my chemical imbalance. We talked a lot about Professor Flannigan but mostly we talked about how I was intellectually a star student but not so much in touch with my emotions. Someone more centered in his or her emotions would have been able to tell Professor Flannigan to “go to hell.” From here, we spent several years looking at my propensity to approach life from my head rather than from my heart.

In addition to this work with my therapist, I developed a huge amount of trust and respect for my doctor. We talked about the fact that for the four years’ preceding my work with him, I had not found any sort of solace in my meds. This doctor seemed to understand that prescribing me an anti-depressant as doctors had been doing since my postpartum period was a huge problem and something to avoid. This doctor realized that anti-depressants that had been prescribed had been catapulting me into mania off and on for four years prior.

Perhaps in writing this book or blog, I am encountering a new aspect of the rock bottom experience. Perhaps the chapter of my life that includes potential abuse as a six-year-old is now sitting on the desk awaiting work. Working through these details surely will help enable my security and my feelings of security and well-being both for myself but also for my daughter and for my family in general.