Nikki's Story:
April 3, 2023 by Nikki and Anne Heart
Although we wrote this post together, we have chosen to present this story through Nikki’s experience.
What You Can Learn
In the fall of 2015, at the age of twenty-four, I was still having unsuccessful results with my current treatment plan.
So, I decided to seek help elsewhere.
After researching medical professionals, I chose a doctor who had thirty-plus years’ experience specializing in psychiatry.
At my first appointment, I informed Dr. S of my current medications, Lithium, Abilify and a chasteberry supplement.
Additionally, I openly discussed my past medical experiences as well as my current physical and mental health.
During this appointment, I was informed the supplement I took likely caused more problems than benefits, so I decidedly choose to stop taking it.
After I discussed the years of unsuccessful medication treatments I received, I was briefed on what treatment plan I can expect.
Subsequently, the new plan I was going to receive was to be geared again toward medication management.
I was also told during this first visit by Dr. S., how she would reach out and consult with other highly knowledgeable doctors to establish the correct medication treatment plan (or as she commonly referred to as “the right cocktail”) I would be receiving.
A few days later at my next appointment, I was told that another doctor was indeed consulted regarding my treatment plan.
Accordingly, it was advised that a new medication plan be prescribed to help me feel better. I was reassured by Dr. S., I would be receiving the “right cocktail” for my wellness.
I, along with my mom, believed and trusted her.
The new medication treatment plan I was prescribed basically consisted of an additional drug, Depakote Sprinkles Capsule.
This new plan also included an increase in my current Lithium medication dosage, but my Abilify dosage was to remain the same.
Soon after, my health mentally and physically took a major turn for the worse.
Within one-month of beginning Depakote Sprinkles, my dosage was increased twice while also adjusting my Lithium and Abilify several times.
Consequently, every time my Depakote Sprinkles was increased, I experienced increased side effects and my overall wellness declined.
My current unwellness now included erratic mood behavior which increasingly worsened over time. Along with episodes of hallucinations that became a regular occurrence.
Eventually I developed a rash on my face.
In this short period of time, I also went through several withdrawals from the constant altering of my medications.
Within two months on Depakote, I started experiencing increased anxiety as well as extreme negative thoughts.
By this time, I also began having heart palpitations. My weight continued to increase without even my awareness at the time it was happening, and my skin appeared to be hardening.
Now, I was currently taking three Depakote Sprinkles’ Capsules for a total of 375mg.
In constant communication with my doctor, I nonetheless reached out for help, telling her the pain I was going through and the symptoms I was having.
I continually received reassurance that I would get better once the “right cocktail” was established, always with encouragement that it will just take a little time to be figured out.
Particularly, it was pointed out to me that the difficulty in my treatment most likely caused by my sensitivity to the medication. Unfortunately, nothing further was done regarding this problem. No medical tests out of the normal blood work were ever suggested.
With my symptoms worsening, Dr. S recommended I open one of the Depakote Sprinkles’ Capsules and sprinkle approximately half of the capsule on my food nightly.
In her opinion, I can decrease my Depakote slightly which should help me get relief.
By the end of December 2015, just a little over two months on Depakote, I had nauseousness, increased heart palpitations, joint pain, major anxiety, weight gain and uncontrollable negative thoughts.
It was decided at this time that my Abilify dosage should be decreased slightly.
To obtain this decrease, I was again told to cut the tip of the Abilify pill.
I continued this current medication regimen which included two Depakote Sprinkles’ Capsules and a few beads from a third Depakote Sprinkles Capsule until the summer of 2016.
Overtime, it became apparent that taking a consistent amount of Depakote this way was impossible.
I noticed that each bead was a different size and counting them was impracticable for a precise measurement.
I took it upon myself to call the manufacturer of the Depakote Sprinkles Capsule.
The information I received from the manufacturing representative was that the capsules should not be opened to take partial beads, since the dosage was based on the weight of all the beads together.
After informing Dr. S what I found out and the increased side effects I was having, she switched the Depakote Sprinkles Capsules with two 125mg Depakote DR Tablets.
During a period of a little over a year being on Depakote, I experienced severe memory loss, nauseousness, uncontrollable weight gain, extreme joint pain, tardive dyskinesia behaviors, dizziness, hallucinations, increased depression, rashes, and worsen irritability.
There were many times I would look in the mirror and not recognize myself and at other times I couldn’t remember how to begin a conversation.
I was in constant extreme physical and mental pain. Simple tasks such as walking became extremely difficult and required me to use a cane most of the time.
At my last appointment with Dr. S., with my mom at my side, I walked in with a cane, somehow still confident Dr. S. would see me and help.
But instead, I was given a thirty-day notice to seek treatment elsewhere.
The only information I was given at the time was, “I can longer help you, and it was in your best interest to seek help elsewhere. Don’t worry, I will help you make the transition.”
During the time I was prescribed Depakote, my life became stagnant.
I no longer was able to work; and in fact, I rarely left the house due to neurological dysfunction episodes and extreme negative thoughts.
Years passed as I constantly reached out for help for an appropriate wellness plan. Always hopeful and always trying to do the right thing.
Unfortunately, the medical community seemed to have turned their back on me once they became aware of the drugs I was prescribed.
Memories still haunt me of the times waiting in the ER for help, and no one acknowledged my existence.
And numerous times asking for help from neurologists and other medical health professionals, only to be brushed off again and again.
While others looked at me as though what I was going through wasn’t real.
As I transition to yet another medical practioner, I started my slow withdrawal from Depakote.
On November 18, 2016, I stopped Depakote completely.
From the beginning, the withdrawal came on full force.
Evidently, there were periods of intensified memory loss, episodes of mania to deep depression in matter of minutes, extreme negative thoughts, confusion, hallucinations, speech loss, body shakes, anxiety, weakness, and incontinence.
Eventually my memory loss was so severe I was unable to comprehend the world around me.
Frequently, I couldn’t remember how to speak or how to use the toilet.
I experienced sharp pain in random parts of my body, including my back, legs, arms.
At times I would feel like something was eating at my brain, but no doctor every acknowledge this as withdrawal.
I needed supervision during the day and throughout the night. The initial withdrawal lasted for over a month, with remnants of the drug lasting years later.
To this day, I can’t recall all that happened during the year I was prescribed Depakote. I still currently experience short-and long-term memory loss as well as concentration problems.
It is unclear what exactly was the direct result of Depakote or the combination of drugs knowingly being prescribed to me by a medical doctor and filled by the pharmacist.
How is the story of my journey important to YOU?
- To help you become aware
- To provide information you may not normally get
- To empower you with knowledge
- To stop this from happening to you
Why can this happen to YOU?
- A lack of knowledge in prescribing drugs
- Incorrect information provided to you
- Relying on protocol treatment plans instead of looking at the individual patient
- Not truly listening to the patient
- Unwillingness to recognize a problem with treatment plan
- Lack of awareness of physical and mental pain pertaining to mental health
What can YOU do?
- Question the medication prescriber
- Research about the medication
- Learn about different techniques and self-help programs
- Realize there is no such thing as a quick fix
- Trust yourself
Tips for YOU
- Know how YOUR medication should be taken
- Verify if YOUR medication pill can be cut, opened, or altered in any way
- Realize cutting or altering a medication can change how the drug is released into your body
- Be Aware of misinformation regarding medication
Facts YOU Need To Know About Depakote (Divalproex Sodium)
- General information
- Brand names
- Side effects
Note: All information in “Nikki’s Story” are based on detail journals covering seven years of Nikki’s life on prescription drugs.
Medical Disclaimer:
We share informational resources that are intended to help you with your self-care plan. We are not professionals. We write based on personal experience and personal research.
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