During my late 40s, I began to experience bouts of utter exhaustion and brain fog, often around the time of my menstrual periods which were irregular. I would wake up feeling like I had not really slept and my memory was sluggish. There were times when even lifting a frying pan took a great deal of effort.
I spent much time on the couch during this time of the month, and did my motherly duties in spurts and with verbal instructions rather than being able to fully participate in the activities. I had experienced this at various times in the past, especially postpartum. Driving was a challenge, and familiar routes would no longer feel automatic as they had before. I would go to bed early thinking I just needed more rest, but at times I would not be able to sleep. My severe iron deficiency had not yet been identified.
I was already seeing a psychiatric provider, and I was waiting to see an endocrinologist because I had an autoimmune thyroid disease which had been diagnosed 16 years prior. I had moved and needed to wait for insurance to go through and get the referral. My mental health provider was a nurse practitioner and she thought I needed to take something for the insomnia and difficulty staying asleep.
Ambien was prescribed. I was told that it would help me fall asleep and possibly prevent waking up in the night. I started on 5 mg; the first month I took it on and off and thought it helped me fall asleep. I did notice that in the morning I felt like I was still not fully awake upon rising. I called my mom and told her and she said I should try coffee. I chose tea, and it provided some relief but I started having the jitters from the caffeine. This was a stressful period of time in my life and I trusted my provider. Unfortunately, a 20-minute appointment was not sufficient to make an informed prescribing decision. Then a couple months later she gave me another script and I started taking the Ambien more frequently.
I had nights when I actually got out of bed and was performing household duties like it was the day and I was awake but I did not realize it. I would wake up and not remember cleaning the bathroom partway or leaving food out on the counter. My awareness of my surroundings decreased, and daytime driving was extremely difficult. I would not remember my schedule for the day and had to keep checking what day it was. I was still exhausted and felt like my legs were heavy and I just needed to take breaks. I also felt on edge, and got triggered by some people questioning my health, as well as the upstairs neighbors who had left a candle burning and the fire trucks had to come. I shared this added anxiety with my provider, who then added a benzodiazepine and I began taking this at night also.
To the best of my recollection, that is when I started getting up more frequently at night and feeling like we were not safe. I found myself at a neighbor’s place, calling for help. I was able to carry on some conversation but it was not all logical and I knew my memory was not reliable enough to care for my children without assistance.
After being hospitalized, several months passed before I was seen by a neurologist. Blood tests revealed anemia and a ferritin level of 6 (optimum levels for women are said to fall between 50 and 100, with levels below 30 being considered clinically deficient). I was told that my insurance would not cover iron infusions or the special type of iron that was quickly absorbed, and so I was put on ferrous sulfate. That caused nausea and constipation no matter how much water I drank. My ferritin level did not go up much, and during this time I still had great fatigue and I was told I was depressed. Another symptom of a “mental illness.” No one told me that anemia could be contributing to the mental health issues that would not resolve. It is my belief that sleep deprivation led to the psychotic features I experienced. The providers put me on antipsychotics; meanwhile, my underlying iron stores remained depleted.
For years, I battled low iron stores and mental health symptoms. There were periods of clarity, but each time I had my menses I still had insomnia no matter what medications I took. I was also diagnosed with restless periodic limb movements, which the neurologist stated was a side effect of the antipsychotics. I was prescribed medication (gabapentin) to combat that.
There were stressors in my life at this time: I was separated from my youngest child completely and this added confusion to my life which no medication could resolve. My ferritin level went up to 16, one point above the low end of the range, and it may have gotten to 20 briefly but the symptoms persisted. No one tried to help me get the iron infusions or special iron supplements I needed, and I actually lost weight from nausea related to iron supplements. My functioning remained limited, and waking up to go anywhere before 10 am was almost impossible. So many people were telling me I was ‘depressed’ and not taking care of myself. I even tried eating liver during my menses. I was doing my best to work part time but on some days I would lose track of items easily and could just barely function after doing my cleaning job for a few hours.
My underlying medical condition should have been treated sooner. Nothing had helped, not even extra B vitamins. I know now that women generally clear Ambien slower than men and that it alone can impair alertness. Although my symptoms began before I started taking Ambien, they were likely compounded by the medication. This provides important context for understanding my experience. Years of my life were disrupted by adding one medication to my regimen that was supposed to help but resulted in chaos.
People in my life accused me of not taking care of myself, of taking medications improperly or not at all, of not getting enough therapy, and that my emotions were all just in my head. It was hard not to have trouble emotionally when I was not getting complete sleep.
I went through abrupt medication discontinuation at the hospital to start another trial with no effect. My iron deficiency was not even mentioned to the significant people in my life, except my mother who advocated for me but was left voiceless. I recall that the neurologist prescribed melatonin, up to 15 mg to help me sleep, on top of the gabapentin for the restless limb movements that were attributed to antipsychotics. The mornings after taking that, I would not be able to get out of bed until around 11 am. I was called lazy and I felt horrible about myself. A few years later, one practitioner told me that high doses of melatonin can induce manic-like symptoms. I am sure this is why I was told I was having mixed episodes of bipolar disorder.
To a mental health provider, I was a complication. And through false allegations my children were separated from me, which contributed to a deterioration of my self-image and confidence in myself as a person and a Christian. I recall people telling me to pray harder, that I was not applying scripture, that I was not casting my cares upon God, that I was going through this trial because of secret sins and much more. Each time I was hospitalized, I had severe PTSD from the traumatic experience and the accusations against me increased.
Medication side effects were not taken seriously, and the communication between the neurologist and the psychiatrist was inadequate. People helped in their way with my children, but no one really took my underlying medical conditions seriously. No one brought me food, even when I was so weak and unable to go to the store without dark sunglasses, ear plugs and ice on my neck. I know I must have looked quite odd but I kept trying to function.
My mom did what she could, and she believed me that there was more to this. I recall having a heavy menses and collapsing and having to drive myself home from work in a bloody mess, and the OBGYN said that as long as I was not going through more than five heavy pads in a day and no extra large clots that it would pass. I was on the couch for days and had to fend for myself. I was barely making it; thankfully my pastor was kind enough to help. At that time, whenever someone asked me how I was I said “tired” and that I could not sleep despite all the medication that was supposed to help me. I was “severely mentally ill” according to the doctors, and this was going to be a life sentence.
I wish I had been more of an advocate for myself, but those medications make you a bit docile, and if you question their medical authority the doctors say you lack awareness or you are not compliant and the benefits of a medication outweigh the risks of another apparent episode. If someone had taken the extra time to look at me as a person and not a diagnosis, my life would have been different. A sleep-deprived person has much trouble with emotional regulation, even if they have never been diagnosed with a mental health challenge. Clinicians should have been looking at my lab values and scratching their heads to figure out how to help me restore my iron levels.
Adding medications to offset side effects was not helpful. I later found research showing that certain antipsychotics can block iron absorption, and that often only 10 to 20 percent of ferrous sulfate is absorbed into the bloodstream. My distress should not have been labeled merely as a “mental illness” problem. This medical stigma negatively impacted my life and my relationships and my trust in the medical field. Being a nurse, I knew there was more to this and I tried to eat liver and exercise and do all the sleep hygiene protocols they suggested. Each time my emotions were off, I was offered another medication and told I needed to comply.
I think it is important for psychiatric clinicians to look at lab values and the symptoms together. If a value is on the low end and the patient is still having trouble, why should they be denied iron infusions or special supplements? My very low ferritin level should have prompted clinicians to see if iron deficiency was the main contributor to restless limb movements. If stacking gabapentin onto the medication pile to reduce the side effects of antipsychotics is not clearly working and providing the sleep necessary for functioning, then what is the use of continuing to increase the dosage? Clinicians need to collaborate with each other and communicate clearly, with shared goals and evidence-based approaches.
This matters because my life and possibly the lives of many others were not improved through psychiatry or neurology. My physical health symptoms overlapped with apparent psychiatric symptoms and medication side effects. A person having psychiatric distress needs more careful medical evaluation, and effective treatments should be made available immediately. It is my hope that other people will see the dire need for reform and accountability so that another person’s life is not destroyed for years. And the stigma of “mental illness” being all in your head should no longer be allowed to influence churches, court systems and medical professions. So many have suffered and been left without a voice and forced into medical compliance while their underlying medical needs are left unmet.
I am one of the fortunate ones who still has my life, and my mind came back. I had to relearn skills, repair my gut, and heal in body, soul and mind. I truly thank God that He allowed me to survive and get help with a functional medical provider. When we start seeing people as individuals with unique medical needs and not as a diagnosis, that’s when real help can begin.
