While the journey continues, it is certainly not without it's challenges. True, she has completely eliminated one pharmaceutical and is now nearly 99% off of her final drug, the last little bit has proven to be quite the challenge. Tapering by just .01 mg is showing the drugs true weight or impact on her with each taper. Many resources that we have relied upon have shared that specifically, Onfi, is very hard to get off of and that it seems the last little bit is extremely tough.
So please continue to pray for Princess. She is definitely tired and these last few days have left her emotionally discouraged, physically exhausted, and mentally fatigued.
Your Name...., Please?
Another interesting find for us is that Princess' memory seems to be incredibly impacted. Her ability to create memory or even retain memory seems non-existent. This has been incredibly tough for Princess as she can recall phone numbers from 30+ years ago, birthdays from friends she has not connected with in years (just to list a couple); however, events like our wedding, and Critter's birth, have vanished. Even seeing friends it is a struggle for her to process names. People who she has just met, will unfortunately, not be remembered due to the decline in her memory. For her, it is truly tragic as she does not mean nor even want to offend or come across as rude, yet, her seizures are an invisible illness. She does not ever want for others to not be thought of and never wishes to make anyone feel like they are not important. But how do you do that when you can't create the memory?
So, if you are reading this and come across her path, please mention your name. It is important to her and we are seeking ways to cement the memories in her journey of healing.
Resources
For our journey, we have been connected to many resources, friends, and groups that have provided encouragement and education. One particular article came across our path the other day and it was relieving! In this ongoing, nearly 13 year journey, we have encountered many (professionals and naysayers) that have questioned Princess' seizures or even questioned what we have seen to be triggers/causes for seizures. To feel like you are alone at times or have a physician question you as to what you are personally experiencing is deflating.
Having said that, the following information came from an online article on WebHealth Magazine. While we are not claiming the validity or the scientific evidence behind such, there is comfort for us that certain things we have seen or questioned as to being a trigger is not so much an exaggeration or aberration and are also experienced.
(for your curiosity, our notes are in bold italics below)
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You Might Be Unaware Of These Weird Epilepsy Triggers
Some things make seizures more likely for some people with epilepsy. These are often called Epilepsy triggers. Triggers do not cause epilepsy itself, but they are things that make it more likely that you will have a seizure. Here’s a list of uncommon Epilepsy triggers you may have experienced or know about:
1- Music: Musicogenic epilepsy is a form of reflexive epilepsy in which a seizure is triggered by music or certain frequencies. (very common- worship at church, certain sounds, even a car blinker)
2- Atmospheric Conditions: Changes in air pressure or any instantly action, (like arising from a prone position too quickly), can act as an instant stressor. Like taking off or landing in an airplane…going up or down on a speedy elevator or escalator. (currently tracking- moreover, tracking barometric pressure. Recently found a study that indicated weather/pressure being a factor)
3- Barometric Pressure: Weather differences such as instant changes in temperature, dark skies, thunder, or bright, hot sunlight and humidity may be a sure Epilepsy triggers.
4- Boredom: You always thought you could be “bored to death” but it can also incite a seizure. By being isolated, having no social interactions, diversions, or recreational activities — all that’s left is to think about yourself and anticipate when your next seizure will come. (never would have described it as boredom, but we were created to be in fellowship, 13 years is long and there are many days of feeling alone, thank goodness for Starbucks and friends that will just check-in and be available to just sit)
5- Dental Problems: Have your teeth and gums checked regularly. Your state of health (especially the state of your immune system), whether you still have amalgam fillings, the amount of mercury you’ve been exposed to over time, and the amount still present in your body, directly influence the number and severity of your symptoms. You’ll never achieve optimum health if you have poor oral health.
6- Diabetes: People with hyperglycemia tend to have focal or local seizures. And those who are hypoglycemic, tend to have tonic-clonic Epilepsy seizure triggers.
7- Grapefruit: It has been proven that grapefruit/juice/rind/skin is also include in Epilepsy triggers that can negatively affect some medications. You are probably saying “but I thought these grapefruits were good for me and my health?” Grapefruit juice provides many nutrients such as Vitamin C, but chemicals in grapefruit interfere with enzymes that break down certain medications in your digestive system which, in turn, causes a high risk of bringing on seizures.
8- Odors and Perfumes: Perfume directly affects the brain and has both a physiological and a psychological effect upon our respiration and breathing, as well as upon our moods and thoughts. Although our sense of smell declines with age, you need to be aware that strong or even subtle smells or perfumes can be one of your Epilepsy triggers for seizures. (this is a huge one! essential oils included. Princess' primary care doc even requests of her patients to not wear perfume for the welfare of her patients, my mom brought this one to our attention with her own sensitivity to Air Wick Plug-ins and other scents in the home...Scentsy, Young Living, etc.)
9- Mah-Jong: Apparently, playing this thinking game, which can require intense concentration, can induce seizures. (You heard it first here!) (though not tested personally, Princess cannot read or write due to the focus required. When reading online, it is generally on a large screen and skimming. There seems to be a concentration factor for us!)
10- Hyperventilation: Sometimes in a stressful situation, it’s the body’s way of saying there is confusion in the brain and it just doesn’t know where to turn. Oxygen is not getting to your brain and the hyperventilation expends vast amounts of energy. You could be in shock and this is where it is difficult to tell whether it is a response from an over stimulated brain or a true seizure. But you could go on to have an epileptic seizure following the stress and lack of oxygen. (For a long time, hyperventilation has been used as a means to provoke seizures. It’s often used to trigger epileptiform discharges and/or seizures during EEGs.)
11- Immersion in Hot or Cold Water: Anything done too suddenly (a quick change of any kind) can lead to a seizure. Going from cold to a warm temperature, or going from a warm house to a bitter cold day outdoors can shock your system. When having a bath it is best to have the bath water warm rather than hot as getting into a hot bath, along with the added humidity present in the bathroom also may be enough to trigger a seizure. When immersing yourself in cold water it is best to do this gradually and make sure you have another person with you to ensure your safety. (though not tested, we have seen that sudden changes to the environment will trigger a seizure)
12- Low Blood Sugar Level: This leads to an insufficient supply of nutrients to the brain causing brain degeneration. (add electrolyte imbalance here, too. July 2017...)
13- Migraines: People with epilepsy are more than twice as likely to develop migraine headaches as those without seizures. Research showed that more than 20 percent of people with epilepsy have migraines, compared to 11 percent of the general population. And there’s an overlap in the two conditions. In another epilepsy study, about 16% of those people who had migraines also experienced epileptic seizures before, during or after a migraine. (all too common Princess can go a few days without a seizure to only have a migraine that may last for 4 days)
14- Overeating: Causes hardening of the brain arteries, leading to a decrease in mental power.
15- Sleep Apnea: Sleep apnea includes Epilepsy triggers in whish the patient of epilepsy face the problem like pauses in breathing, indicated by gasping, snoring or difficulty in breathing during the night. It is more common in men than in women, and often occurs in larger people whose throat muscles and fat tissue cause an obstruction while they’re sleeping. These pauses in breathing can easily be confused with seizures. In fact, having apnea can Epilepsy triggers seizures. Having seizures can also trigger apnea; so it can work either way.
16- Talking Rarely: Intellectual conversations will promote the efficiency of the brain. (it feels good to serve and be a blessing, Princess would love to just visit, interact, serve)
17- Water: Yes, you can have too much of a good thing. Water is good for us, but it can dilute your medications. It’s best to spread your fluid intake over the day. Your body needs a balance of salt and water. And be cautious of drinking water from plastic bottles and leaving them lying around in the heat.
18- 3D video games as Epilepsy triggers: 3D and certain patterns/colors ARE seizure triggers. The truth is there is a propose legislation (I read this somewhere) to put a label in certain video games that have that type of flashing light/patterns that could affect people. (flashing lights, riding in a car at night, dimming or raising venue lights.... we've seen it)
There you have it! Certainly not an exhaustive list, but it certainly was one that told us that these seizures were not just in your head (as one Neurologist actually said to us a few years ago).Please pray for Princess' journey!
Specific Prayer Requests:
- guidance with the taper schedule
- strength to endure for the days ahead
- local friendships to form that would allow for socialization, prayer, and healing
- GOD TO GET THE GLORY IN ALL THINGS
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