New and wondering what MCI as a precurser means

jglehman

Hello - I’ve lived with autoimmune issues, celiac disease, and a series of traumatic brain injuries that resulted in vertigo, tinnitus, and auditory and visual intolerances for 20 some years.  Two years ago I had to stop working due to speech and memory issues that became painfully noticeable to colleagues, to my supervisor, and to those I supervised.   But some progressing cognitive problems and facial pain, which continue to disrupt our family’s daily life, had us seeking an opinion at Cleveland Clinic (CC) recently.  We chose CC because of their speciality in concussion and facial pain.  

When we heard my Cleveland Clinic neurologist say, “Unfortunately you don’t just have trigeminal neuralgia (TN)”,  I knew this was not good,  “your cognitive issues…you have mild cognitive impairment, which is often a precursor to a form of dementia.  It may take 1-10 years for that progression to really kick in but I think you’ve been smart enough to manage it for a while now, at least since 2015 when you did your first round of cognitive testing.”  I didn’t hear the rest “… any questions?”  I was too stunned to react let alone think of questions. Somewhere in there he also explained that the fainting episodes we were previously calling and treating as a symptom of vestibular migraines were actually epileptic seizures.  

I head back to their Brain Restoration Institute to meet with specialists for testing (sleep study, cognitive mapping, EEG, diet management, physical and neuro therapy, and ketamine therapy for the trigeminal pain if we can manage the seizures by then) in September.  

I’m terrified to go back in September because right now I continue to live in the hopeful (yet still tough) zone of MCI. 

Emotionally, having to stop work was tough - I was an executive leader who at the age of 50 was just seeing the fruition of years of hardwork.  The loss of my driver’s liscense from seizures was another loss of independence.  My husband won’t let me bike after two seizures on the bike.  I feel as if  I do everything right: exercise, eatting, and sleep habits - although I’m so exhausted I seem to be sleeping 10 hrs or more on bad days and on every day fight to stay awake until 7pm. Good days are great but bad days are really bad and completely out of my control with slurring, memory issues, and wandering. 

I don’t understand MCI as a precursor and what that means… can’t I just stay in MCI?  From what I’m reading I can.  Couldn’t my still unmanaged seizures be contributing to the cognitive issues?  

And I am so sorry for those diagnosed with EO because the possibility of that scares me more than anything.  

Patiently waiting…and thankful there is this group willing to share.  Sorry for the long introduction!  I’ve been holding this all in for a while…

Iris L.

Jg, you have a lot going on medically. Read about CTE. I wrote a long answer on your other post, so I'll add a bit here. Before you stopped working, did you apply for medical disability? A diagnosis of MCI has the distinction of being variable.

--A person with MCI may return to baseline if the MCI is caused by treatable medical causes.

--A person with MCI may remain at this level indefinitely, due to nonprogressive medical causes, such as brain trauma or another disease process.

--A person with MCI may progress to having Alzheimer's Disease or one of the other dementias. In this case the MCI is a precursor of dementia.

There is no way of predicting if MCI will revert to normal or remain stable or progress. Treat whatever is treatable and wait and see.

Regarding being terrified. One of our emeritus members, Alan in Colorado, who was himself a psychologist, warned us that stress and anxiety would decrease our cognition by HALF! Once I learned this, I focused on practicing stress relief techniques. My primary technique was, and still is, deep breathing. I also looked into aromatherapy, for which there are many threads here. I used many other techniques. The main thing is to limit or eliminate stress and anxiety as much as possible.

I can tell the difference when I am stressed--my mind goes blank. AD is one of the scariest, if not the scariest disease. We can't change the disease, but we can change our approach to it. When I thought I had dementia, I decided I would not become a victim. This didn't mean that I had a cure, but that I would take charge of my life. And I am doing that! Jg, I hope you can learn to be not so terrified.

Iris