How my Rare Disease caused Brain Fog

What You Must Understand About Brain Fog

Read time 5 minutes

This blog is another opportunity to feel grateful. Thank you, dear Universe, you continue to bless me with recovery and health.

Day by day, hour by hour, the aftermath of my rare neurological-based prescription deepened my experience of brain fog.

How my Rare Disease caused Brain Fog

Initially, it was hard to speculate as the responsible medicines sneaked up, as still as a mouse. However, it was possible to overcome it with the right strategies and support.

Have you ever experienced issues expressing yourself or finding the right words? What about making efforts to even talk, utter confusion, or even remembering things for that matter?

My Neurological condition, Isaacs’ Syndrome affects the peripheral nervous system. In my experience, there was vagueness and numbness in the head. Also, feelings of being overwhelmed, confusion, forgetfulness, and mood swings. Moreover, the psychological impact of having the disease was significant.

This blog post explores how rare prescriptions can easily control a patient. It is important to understand the potential medicinal side effects in such cases. It is crucial to create awareness about such subjects to:

  1. The patient’s medication plan can be reviewed and customized to cut down on the ill effects of the medicines.
  2. Some extra support and care could be offered to curb adverse reactions.
  3. It can lead to better management of physical and emotional medicinal side effects.
  4. The associated risks vs benefits of the prescribed medicines could be evaluated.
  5. It could be the driving force for future research and development.

My Rare Disease

I was diagnosed with a rare disease called Isaacs’ Syndrome. Isaacs’ is a neuromuscular health condition that stems from muscle hyperactivity. In the process, I also discovered that I had Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks. I was also accompanied by Glaucoma. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease. I faced tremendous issues with my gut, stomach acid, and digestive enzymes. I also developed Diabetes and Blood Pressure.

I was diagnosed with a rare disease called Isaacs’ Syndrome. Isaacs’ is a neuromuscular health condition that stems from muscle hyperactivity. In the process, I also discovered that I had Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks. I was also accompanied by Glaucoma. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease. 

My prescription was a huge list with a daily of 42 pills. It included medicines for the rare and chronic diseases. During my journey, I even developed Blood Pressure and Diabetes. Also, acute problems with my gut, stomach acid, and digestive enzymes.

My list of medicines included painkillers, immunosuppressants, steroids, food supplements, and sleeping pills. Also, oral and intravenous antibiotics, anticonvulsant medication, Insulin, blood thinners, and statins. The list continued with beta-blockers, Corticosteroids, Diuretics, probiotics, IVIG, and Plasma exchange therapies. I was also on Homeopathic and Ayurvedic medicines.

Many rare and chronic diseases characterize day-to-day unpredictable situations and symptoms. The situation can easily make one vulnerable to creating further complications.

The entire transformation from being normal to rare and then living with it isn’t easy. Various unpredictable moments, practical and emotional difficulties, and social imparity are tough adjustments.

Initially, I thought experiencing a different myself was just a passing cloud

It is important to acknowledge that each person is unique and so is their situation. Having said that, the connection between rare diseases, cognitive responses, and brain fog is quite diverse.

It didn’t happen in a day!

As I spent more time with my neurological prescription, the experience deepened. I faced difficulties in conversing and focusing and also forgot simple things.

I felt a gap in what was expected out of me vs delivered during conversations

It was challenging to interact with others due to a general sense of space. There was a lack of desire to indulge in conversations. Though I had all my family’s support, yet, at times the compulsion to communicate was exhaustive. I noticed a sense of dullness in my brain and had unconventional thoughts.

Navigating social interactions was particularly challenging because of physical and psychological limitations. Most often I felt anxious and self-conscious about the fear of being judged. It felt important that many such barriers need more inclusive and supportive answers.

Don’t go by my looks as the reality of living with an invisible disease is even more difficult!

Many rare diseases like Isaacs’ Syndrome are somewhat invisible illnesses. I mean it does not have obvious physical signs therefore making it less likely to notice the severity of the condition. At times, the reality of living with invisible diseases is even more difficult.

I often heard ”but you look great” but people hardly could relate to what’s going on within. It was hard for them to digest when one day they saw me fine and the very next day found me hospitalized. To be honest, even after 8 years, I don’t understand either.

Strategies Imbibed to Overcome this Cognitive Impairment

Brain Fog and Isaacs Syndrome and Lyme Disease

A rare prescription especially those that affect the mind and mood is capable of altering the sense of self. It can lead to various confusions about which facts came from behaviour vs that which were influenced by medicines.

Despite the challenges posed by brain fog, I found several strategies that helped me cope. They eventually helped me overcome brain fog:

  1. To begin with I tried rebuilding my confidence with simple activities. I often reinforced my lanes of memory, focused on thoughts, and wrote the ones related to work. Initially difficult yet with time I realized not missing out on important matters.
  2. Inhalation of Rosemary oil helped reduce mental fatigue and activated a sense of calmness.
  3. I cannot miss mentioning the use of dark chocolates. While they are not magical brain boosters yet moderate use of it offers benefits.
  4. Having said that I was asked to limit my use of refined sugars for many reasons including its association with lower cognition.
  5. Customized mindful practices of self-care techniques like yoga and meditation.
  6. Keeping a watch on self-behavioural patterns helped.
  7. Ensured getting enough rest.
  8. Though it was challenging but I tried doing something creative.
  9. Going outdoors, and taking some fresh air was a positive promotor of mental clarity.
  10. Increased my intake of fruits, protein, vegetables, and healthy fats.
  11. I stopped questioning too hard about the changes instead coming to terms was helpful. Also, I noticed that becoming impatient only worsens and challenges the situation.
  12. I maintained open two-way communication with my health professionals. It helped in identifying that my range of medicines across genres was capable of leaving a residue on my overall health.
  13. Revisiting the prescription and making periodic adjustments reduced the burden.

Conclusion

Brain fog is a lay term that describes cognitive difficulties. It is that vagueness, forgetful feeling that can happen for various reasons.

Brain fog can be a response to certain health conditions and the use of specific medicines. Also, poor nutrition, lack of sleep, stress, and neuroinflammation could be responsible.

Knowing the symptoms can help address the underlying contributing factors and treatments.

Dealing with brain fog as a result of a rare neurological-based prescription can be a daunting experience. However, it is possible to overcome it with the right strategies and support.

By sharing my journey, I hope to inspire others facing similar challenges. I hope others find resilience in their journey towards clarity and cognitive wellness.

DISCLAIMER

The views expressed in this article are the author’s own and do not represent any kind of medical advice.

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