Exceptionally Heavy Rains - When Your TSC Spikes out of control!

By   

Alexis Minnaar  

Written: 05/04/2021  

Updated: 26/11/2021  

  

Hey, friends and family!  

 

Full disclosure? I drafted this article in April. However, honestly, I have not had the energy to post it. So, here is an update, (along with the original piece).  

Recently, a friend of mine pointed out that I have been absent for a while. He casually remarked, “Hey Alex, when are you writing again? I haven’t received any notifications recently.” At this point, I explained to him, when living with TSC and epilepsy, you do not have control all the time. Sometimes, epilepsy spikes and spirals out of control. When experiencing between 10 and 15 seizures a day, you lose control over your own mind. You lose control over your own thoughts. You lose control over your own body. This sensation is frightening as well as frustrating, rendering you helpless - trapped within your own vessel: body, mind, soul. Over the past month and a half (in April) ten months to date, this is where I am. 

  

In February, I was hospitalised for three days; seeing doctors, undergoing scans trying to figure out what has been causing my epilepsy to suddenly relapse. Before this, my epilepsy had been under control for three years. Thus, the tidal wave of seizures took me by surprise. While in Sunning Hill Hospital, I underwent a 24h video EEG (electroencephalogram) including two strobe EEGs and two hyperventilation EEGs. Along with this, I also went for an MRI scan (Magnetic Resonance Imaging).  Although I was having seizures, the EEGs did not pick up ANY readings supporting the events but instead, it returned normal. The MRI results, however, were surprising to say the least. According to the newest results, the doctors may have discovered an apparently “new” nodule deeper within my brain tissue. This “new” nodule is situated in the white matter. I say “new” because the odds are, it has always been there; the older machines just never picked it up due to its depth. Dr T Aduc (my Paediatric neurologist) and Dr J Pearl (my adult neurologist), then agreed to change my medication dosages. The Tegoratol has now increased from 200mg to 500mg (morning and night). This has been done in an attempt, to stabilize the seizures. So far, this has been unsuccessful. 

 

I adamantly continued seeking professional help during this time. Dr Peal subsequently has referred me to Dr Bulter, an epileptologist. He specializes in (you have guessed it) - epilepsy. At the end of November, I am travelling to Constantia Berg, Cape Town to meet him. This stay is scheduled to be a long one. Dr Butler has more advanced technology than the hospitals here in Joburg, therefore, I will be hospitalised in Cape Town for three weeks of investigatory tests. During this time, we will be doing scans and research to determine WHY my seizures are acting the way they are. I honestly, just hope we gain some insights this time.  

  

In the meantime, it has been important for my mental health that I return to the land of the living. After my hospital visit (in February), I returned to work, I had to continue to take care of my family, I had to return to my studies. The one thing I have learned, repeatedly, is that the world does not end, even during times we feel like it might. I am a wife, I am an educator, my life cannot simply stop because I am struggling. There are others in my care, classes continue, life moves on. This means, adjusting my lifestyle to promote balance and getting enough sleep and nutrients to function optimally. 

  

Sometimes, (but not always) we bring these types of situations on ourselves. Things like, sleep deprivation - because we have SO MUCH work to do or fun things to experience, bad diet – because it is easier to order Uber Eats and drink one more coffee than make our own lunches, or like staying in a toxic relationship or toxic friendships because you are afraid to be alone, (or people have told you, you will not survive without them). Sometimes, our health relapses due to circumstances outside of our control; stress, trauma we have suffered, emotions we suppress because we are afraid of being “weak.” 

 

In all this though, how we deal with, and work through uncontrollable epileptic episodes is what matters most. We cannot allow ourselves to stay in a position which causes us more harm than good. 

  

So far, all the tests I have done, have frustratingly returned normal. There is certainly an imbalance somewhere, in either my lifestyle and/or my epilepsy that needs to be identified. The doctors and I are looking at a few theories which will explain the relapses in my condition. I will keep you all updated as we discover more. 

  

I hope you are all staying healthy. 

 

Live without being defined by your condition. 

 

Power through whatever you are currently going through. Remember, to talk with professionals, as well as doing your own research. Eventually, a solution will be found. Difficulties such as these, help to build character within us. Take courage and stay strong.  

 

P.s If you are looking for encouragement, look to the Hibiscus flower. The one in my mother’s garden, only blooms after exceptionally heavy rains.                              

My Mother's Hibiscus