OpenHealth Q&A

Seeking Support Through My Challenges

I sincerely apologize for the length of this message, but I truly hope that even one person takes the time to read it. I find myself uncertain about where exactly to begin. It’s crucial to share my background of trauma and significant medical procedures that have occurred in my life leading up to the present day. In November 2018, I received a diagnosis of Cervical Dystonia, specifically Anterocollis. Unfortunately, life took another tragic turn in March 2019 when I lost my sister to stage four cancer. By October 2019, I suffered a cardiac arrest, resulting in a diagnosis of Pulmonary Edema and Right-Sided Heart Failure, yet thankfully, surgery was not required. Eight weeks later, I had to return to the hospital where treatment with intravenous Frusemide helped clear my lung issues. I experienced four additional hospital visits before an echocardiogram revealed severe damage to two heart valves, including one that had completely detached; specifically, my Mitral and Aortic valves. This condition wasn’t present upon my prior discharge. After assessments by five different registrars, the only theory they could propose was that my issues stemmed from exposure to an odorless toxin. Eventually, I underwent surgery to replace both valves with tissue ones. Concurrently, I grappled with my cervical dystonia diagnosis. After the valve replacement, I returned home to a long and arduous recovery, which thankfully saw some improvement. However, managing cervical dystonia came with its own set of complications including constant chronic pain, feelings of social isolation, anxiety, and depression. I began attending a Deep Brain Stimulation clinic, which linked my condition to an antipsychotic called Abilify. Following my medication's cessation, the team suggested waiting for up to two years to see if my cervical dystonia would improve, but that did not happen. Meanwhile, my sternal wires broke, necessitating their removal in February 2024. In March 2024, I found myself in the emergency room three times, ultimately being diagnosed with appendicitis. Due to scarring from a bowel resection performed twenty years ago, there was concern regarding the appendectomy. I was placed on antibiotics, which initially resolved the issue, allowing me to go home. Unfortunately, I returned to the ER just a week later, leading to a decision to perform an appendectomy. During the surgery, the surgeon attempted keyhole surgery but ultimately had to perform an open procedure due to significant scarring from my earlier surgery. As I coped with these medical challenges and continued my visits to the DBS clinic, which required a three-hour journey, I felt an overwhelming weight at the thought of undergoing yet another surgery, with my history of five major surgeries looming over me. Yet, I felt determined; I wanted to reclaim my life. Throughout this time, I was also managing diagnoses of CPTSD, major depression, and anxiety from two decades ago. Additionally, I received a diagnosis of Combined ADHD in August of last year. Finally, on May 13, 2025, I underwent the DBS operation, which occurred just three months ago. But now I reach the crux of what troubles me: four days following the DBS, I was hit by an extreme level of fatigue that has persisted ever since. It feels as though I’m carrying an unimaginable weight around, leading to days where if I exert myself too much, I find myself bedridden for a couple of days. My muscles ache; moving is a struggle, whether it’s retrieving myself from the couch or rising from bed. I often have to coax myself into action. At day’s end, I struggle to shift from the couch to my bed. Although the DBS operation itself was successful and I’m regaining movement in my neck, I still encounter ongoing health concerns. I consulted with my GP who ran tests on my heart and blood, all of which returned normal results. He then advised me to see my psychologist. I subsequently contacted my psychiatrist, who increased my antidepressant dosage with Agomelatine. Honestly, I feel that if it weren’t for this crippling exhaustion, my mental health would be manageable. This isn’t clinical depression—it feels different. I have followed the psychiatrist's advice and started taking the increased dosage of Agomelatine. Yet, my mood tends to drop when I become overwhelmed by fatigue. Additionally, my recent ADHD diagnosis has likely impacted my dopamine levels, which I already struggled with significantly. For example, tasks that used to take me an hour and a half now take me a week—like removing nail polish and trimming my nails, which underscores the challenges I’m currently facing in accomplishing even the simplest of tasks.

Answers (1)

8/8/2025, 2:31:35 PM

OpenHealth AI

Thank you for sharing your incredibly detailed story. It’s clear that you've been through a lot, and it's understandable to feel overwhelmed by the layers of challenges you face. The fatigue you are experiencing after your Deep Brain Stimulation (DBS) surgery, alongside your existing conditions, is significant and deserves attention.

Main Points:

1. Persistent Fatigue: Your extreme fatigue after DBS can stem from multiple factors, including recovery from surgery, medication effects, and your ongoing health conditions.
2. Impact of Mental Health: The increased stress and anxiety levels, coupled with dealing with ADHD, can make fatigue feel worse and complicate your daily functioning.
3. Actionable Steps: Prioritize symptom management, establish a routine, and seek further clarification on medication impacts.

Explanation:

The fatigue post-DBS can be multifaceted. After any major surgery, it's common to feel more tired than usual as your body heals. Medications, including increased doses of antidepressants, can also contribute to feelings of lethargy. Furthermore, your chronic conditions, anxiety, and the cognitive load from ADHD may intensify these feelings, making even small tasks seem daunting.

Next Steps:

1. Establish a Gentle Routine: Consider setting a predictable daily schedule. Break tasks into smaller, more manageable steps to avoid feeling overwhelmed. For example, focus on one task per day, like removing nail polish or trimming nails.

2. Monitor Your Energy Levels: Keep a diary to track your fatigue, dietary habits, and activities. Noting what worsens or improves your energy can help identify potential patterns or triggers.

3. Discuss With Your Healthcare Provider: It’s essential to communicate about your fatigue with your psychiatrist and healthcare team again. They might need to assess whether your current medication, Agomelatine, or the dosage, could be affecting your energy levels.

4. Physical Activity: Incorporate light, gentle exercises, like stretching or short walks if you feel up to it. This can help improve your physical stamina over time, but be sure to listen to your body and rest when needed.

5. Nutritional Support: Focus on balanced nutrition, ensuring your diet supports your energy needs. Sometimes, certain deficiencies can contribute to fatigue, so eating a variety of fruits, vegetables, proteins, and whole grains can help.

6. Follow-Up on Mental Health: If possible, engage regularly with your psychologist for strategies that could help manage your ADHD and mood fluctuations in relation to fatigue.

Remember, reclaiming your life is a journey that requires patience, and it’s okay to take small steps. Surrounding yourself with supportive networks can also be beneficial. Let me know if there are specific areas where you feel more guidance would help. You're doing your best in a time of significant challenge.