Category: Chronic Fatigue Syndrome

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BIPOLAR and DEMENTIA: AN UNHAPPY PAIRING

Bipolar and Dementia: An Unhappy Pairing

5 Novemberr, 2022

This post requires a preface: 

Life seems to give us as many obstacles as it does choices. If you are lucky enough, you will find a path around or through your obstacles. Never overlook obscure opportunities that may help you on your way. In a worst-case scenario, blaze your own way … kick ass and take names. 
I won’t say that we only live once because I do not believe that, but we do owe it to ourselves to make the best of the life we are living now.

With the greatest blessings, 
Noor 

(“Noor,” is a common Arabic unisex name meaning “light”, “The Divine Light.” May I help bring light to you through life’s many foibles and success!)

A couple of weeks ago, I loaned a book to my boss about dementia and how the philosophy and education methods we use are being applied to persons with dementia. It is a way to keep dementia patients mentally active and engaged, and potentially to slow the rate of the disease’s progression. I have taken many courses that are specific to working with persons with dementia, and my Master’s degree is specific to my educational philosophy and methodology. It is a union with a great deal of promise. 

After lending the book to her, I started thinking about how my Bipolar might be affected should I begin to develop dementia. I took an entirely fresh and idealistic approach to researching bipolar and dementia. I thought of it as a big “IF” or “unlikely” that I develop it. What I began to discover killed the glee and optimism I was feeling. What I was finding was terribly disturbing. For once this was not some creative writer’s errant opinion, but rather it was hard scientific investigation and facts from doctors and researchers … medical professionals. I did not like what I was finding. To quote a line from a recently watched show, “People lie. Facts do not.” Since a lot of this material was in scientific journals with terms and formulas which I would struggle to paraphrase, there will be some direct quotes with hopefully sufficient documentation should you wish to delve further. I will spare us all the torture of APA formatting in this post.

What immediately jumped out was a 2020 analysis where it was determined that people with bipolar disorder are about three times more likely to develop dementia, while another expansive analysis also found a significantly increased risk (1). These chances increased exponentially with the earlier the age that Bipolar arises in the individual. My Bipolar reared its ugly head at around the age of 12 or 14, so this was not exciting news for me. My pediatrician at the time chalked it up to prepubescent mood swings and anxieties, setting a decades-long period where I went undiagnosed and untreated despite what should have been clear Bipolar warning signs.

Another statistic that was commonly shared by most of the researchers revolved around the frequency of severe Bipolar episodes in relation to increases in the likelihood of dementia. “The number of bipolar episodes someone experiences could also play a role in dementia risk. In a 2004 study published in the Journal of Neurology, Neurosurgery & Psychiatry, the rate of dementia increased about 6% with each bipolar episode that led to a hospital admission.” (2)  For me, as well as for most people (especially for those with finance or insurance limitations, or more importantly those who are not yet aware they are dealing with something as serious as Bipolar) there are likely a myriad of instances when we should have gone to the hospital but didn’t. This qualification of hospital-admission is skewed in my opinion because the number of serious Bipolar episodes one has had may not be properly credited to Bipolar-and-hospital stay stats. 

On a bit of personal reflection regarding my last post and my family medical history, I found more statistics, heavy on the Bipolar numbers. They say that “if you were diagnosed with Bipolar at an early age, this generally predicts a shorter overall lifespan (see above paragraph). Though, it does depend on your lifestyle and individual contributing factors, which can be improved.” (2)“Experts have established that living with any mental health condition reduces your life expectancy by anywhere from 8-10 years. The life expectancy for someone with Bipolar Disorder is approximately 67 years old.” (3)  This I found particularly upsetting as I have enough planned for my future to maybe get me to 80. But it might also explain why of three of my grandparents with mental health issues, two died at 69 and a third barely made 70. As good healthcare and healthy living are important to all of us, this may be a key primarily for dementia, proper medication care can be the tool for Bipolars to outlive the statistics.

I am including the results of a couple of pharmaceutical studies that show us that no matter what the facts tell us, there is always something new and promising waiting around the corner, in this case a lithium vs. valproate comparison: Which one works?

Scientific Reports volume 12, Article number: 14142 (2022)

“Effect of valproate and lithium on dementia onset risk in bipolar disorder patients“

Compared to non-users, valproate-only users and both users showed a higher risk of dementia (59% and 62%, respectively). In sub-group analysis, valproate increased the dementia risk when prescribed for at least 59 days or 23 cumulative defined daily doses. However, the dementia risk associated with lithium is unclear. Therefore, we concluded that lithium has the potential to be the safer choice as a mood stabilizer over valproate for elderly bipolar disorder patients considering the risk of dementia. (My note to you: I have been on lithium for almost 15 years. Look for studies related to Lithium treatments).

Finally, use the information above as a tool to improve your lives – and stats. I am not married to the statistics above, but rather I will try to rewrite them. Eat well, mind my foods choices (or in moderation) that promote good health. See a doctor often. Change my meds if/when they are no longer effective. Create a happy and full existence and watch as I pass that 67 year old landmine! I intend to look back at it from my 70’s or 80’s.

Hang in there!!!

Blessings,

Noor

  • Bipolar Disorder and Dementia: What’s the Connection? Written by Angel Ridout, Jul 19, 2022
  • National Library of Medicine, National Center for Biotechnology Information. History of Bipolar disorder and the risk of dementia: a systematic review and meta-analysis. Journal List, HHS Author Manuscripts, PMC5365367

Trusted Source, 2021

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CHANGE CAN BE A BLESSING

1 October 2022

CHANGE CAN BE A BLESSING

Constant and often difficult change defines my youth and early adulthood. My family was always moving … New York, Pennsylvania, Chicago, and Europe (I was packed off to university in England to get as far away from the smothering and dictatorial control of my parents … it brought about significant changes in my development as a person), Phoenix and Dallas. The next few moves were of my choice, so they were better, but it was still change, starting all over with a new city, new job, new home, and new friends. When you are young and experience significant change, it can offer the opportunity to reinvent yourself. New friends did not know the painfully shy boy that I left behind in the last city. Sometimes change provides opportunities for personal growth. Moving to NYC with my then-boyfriend, now-husband, was a period of great change and social upheaval. After many wild years, we settled into our quiet comfort zone, pleased with the metamorphosis that has become us, and we settle into a calm peace.

Being enveloped in the status quo feels safe and comfortable, like the blanket carried around by Linus (the Peanuts cartoon character). I’ll admit, I am keen on consistency and calm, things being the same, stable, and safe. I do not even like changing planes at the airport even when I know it will get me to the destination I seek. Moving in the near future (anywhere) for retirement scares me even though I know the outcome will likely be incredible. Any degree of change, now or in the foreseeable future, ramps up my anxiety, and I have to labor to bring it down to a palatable level. Well, that, and I have medication.

One thing that has affected me very strongly in the last year is a severe deepening and dark descent into the depression side of my bipolar. These dark days last longer than my normal lulls, often passing a week or more. I have been dealing with bipolar/depression almost my entire life. I know how to read it, how to pacify it, and how to act and react in order to try to minimize its impact on my daily life. But these trips to the depths of the Bipolar Sea have been different. I had lost interest in simple things, things I needed or wanted to do, and was overall indifferent to everything. I was not suicidal, but bipolar and depression run wild in my family tree, and the suicides I am aware of in my family happened in older age. I am not going to be part of a family statistic.

My first step was to have a serious and revealing chat with my psychiatrist (NOT with Lucy from the Peanuts). It is the longest discussion we have had in a long time. My frequency and severity of bipolar episodes have worsened with age, and medications may need to be changed, or medication amounts of what I already take might need to be adjusted or increased. When I spoke with my doctor, I let her know that my medications and their amounts had changed minimally since I was diagnosed and prescribed in Switzerland 15 years ago, although symptoms presented themselves while I was in my teens and I lived untreated the bulk of my life.

I had previously been reluctant to request changes since I had remained relatively stable all of these years, but I knew that something in my body and brain was changing and becoming less stable. I mean, who wants to walk around all day every day ready to burst into tears for absolutely no reason? Plus, I realized I was manifesting more afflictions attributed to maturing persons with Bipolar, including constant sadness and fatigue, concentration issues, sleep changes, and hopelessness. My doctor, alarmed by what I was sharing, changed (actually doubled) one of my daytime medications. I am happy to say, it has made a profound impact on me and my outlook. I only wish I had addressed this sooner. But better late than never.

But that was weeks ago now. The euphoria I experienced during the first week on the increased medication was great. I felt as if I was walking on sunshine. I was happy and invincible on a level I had not experienced in quite a long time. Now, I have somewhat reverted backward. I am not beaming rays of light, but likewise, I have not fallen back into the dark caverns that haunted me so often. I am in a middle ground, neither elated nor depressed. If that is the best I can get for now, I can be content that it is not worse. This is a status quo I can live with until the next adjustments in my medications.

What do your medications and mood swings tell you? Are you in a good enough place to just keep plugging along? Are you as happy as a kid at the carnival? Or do you feel like you fell through a hole in the ice and are frantically clutching at the ice around you just to hang on?

Think about where you are and where you want to be. Only you can make a difference, and be the catalyst for the life you want and deserve.

Blessings,

Noor

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COVID AND CHRONIC FATIGUE SYNDROM

24 April 2022

COVID AND CHRONIC FATIGUE SYNDROM

A couple of weeks ago, my husband asked me why I was always so tired all of the time and why I tired so easily. I guess I felt so “blah” that I never gave it much thought, that I was so relieved to be able to just stop whatever I was doing that I never questioned it. So I looked fatigue up. CFS, in relation to COVID, has lots of write-ups. Generally speaking, COVID fatigue only lasts a few days to a few weeks (my COVID was February/ March of last year and here I am, physically still tired and mentally foggy today). The one thing the numerous articles had in common was that we still do not know all of the long-term effects of having had COVID, and that there is an increasing awareness of what is called “Long-Haul” COVID.

According to an article in Healthline, “one 2021 study Trusted Source collected information from more than 3,000 people in 56 countries who had COVID-19 and experienced symptoms lasting longer than 28 days. The researchers noted several similarities between long COVID and CFS. At 6 months with long COVID, study participants reported three common symptoms: fatigue, cognitive dysfunction, and post-exertional malaise (PEM). PEM occurs if someone has worse symptoms following physical or mental activity. This mirrors what happens in CFS, when people may find it difficult to do the tasks they want to do. The same study found that nearly half of the participants had to reduce their workload due to their symptoms, and 22 percent were unable to work at all.”

I have mentioned in past posts that my former manic episodes were a mixed blessing. I did not need much sleep and I accomplished an amazing amount of tasks. That sense of constant animation was tempered by my bipolar meds when I began taking them, but I considered the loss of some motivation acceptable because it also tempered the depths of my depression episodes. Still, nothing seemed to answer constant fatigue I live with every day now. I can still push myself, but it is difficult. Yesterday I gardened for a couple of hours, but I had to drag myself to do it. It was the first day where the weather was agreeable enough to force myself to tackle the overgrown retaining wall and the Hell-strip. I never see this side of the house anymore, so when I did I was mortified. I accomplished a lot. Not everything I hoped for, but my mind was fuzzy as it always seems to be, and the work tired me enough that I took a two-hour nap. I would have napped longer but then I would have missed dinner.

I met with one of my doctors this week and we discussed my husband’s comment regarding my constant fatigue. She agreed that there is a physical link to my constant tiredness, and that as we move further away from the initial onset of COVID, new short- and long-term health issues are being discovered (there is a study being conducted on US veterans on the effect COVID and heart disease). She thinks that my physical manifestation is exacerbated by the mental exhaustion from anxiety and persistent depression, both of which have maintained higher than normal levels because of work-related issues this last year, and the societal effects of COVID such as isolation. It seems to make sense since my anxiety levels fluctuate between high and higher throughout the work day. Her only recommendation was to keep on doing the stress-relieving activities I have been doing all along. If it works even in the slightest, keep it going.

Anyway, that is enough to think about for now. I would be interested to hear what others are feeling.

Tschüss,

Urs