Tumor Growth? Nah Probably Seizures.

I had a major breakthrough on Friday. For some reason a little voice drew me to the computer to Google simple partial seizures. What I read blew me away. I've copied and pasted the page below; the highlighted yellow areas directly describe my seizures. The red notes are my explanations. From what I read, I am now less convinced of tumor growth, and more convinced that I am very subjectable to seizures. Much more so than I realized. Also, by sharing this information with Danny and my parents, I have finally been able to explain what has been happening in my brain for years. I hope this provides a window into my reality. PS Ben, thank you for the idea on getting a seizure dog. We have tried to train our dog (to no avail - she doesn't have the attention span) and we can't get another pet. But I'll bet the next dog we get will be a seizure dog! What an amazing capability those dogs have. It's wonderful.

Partial Simple Seizures (www.epilepsy.com)

Motor seizures:

• These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. - My right hand and arm stiffen, losing function.
• The movements may spread, either staying on one side of the body or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements. - I lose the ability to open my pill bottle, or explain what I need. I can usually say the basics, but the more I have to explain what I need the more likely the seizure will progress to a more severe episode. The more I have to think the worse I get. The worse the seizure progresses, it moves from my hand, to my arm, to my shoulder, to my face.

Sensory seizures:

• These cause changes in any one of the senses. - Everything becomes too loud, too bright, too hot. I also get voraciously thirsty.
• People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. - I hear voices. And pins and needles show up starting in my right hand, traveling up my arm, and if it progresses it moves up to the right side of my face. It hurts.
• Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. - I just wrote about that sensation in the last post - the floating, or falling throughout space. Crazy! I didn't know that was the seizures! Apparently I get them more often than I realize.
• They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear. - During heavy seizure activity I hallucinate conversations and experiences with people (both past memories, and novel interactions), my surroundings feel like they're moving - I hallucinate about what's currently happening around me, yet I'm conscious and responsive. I had no idea that this aspect was an active seizure. I thought I just had a very vivid, active imagination. It's truly an amazing, ethereal experience. Oddly, at the time, it feels like I'm living in my own version of string theory. It's fascinating.

Autonomic seizures:

• These cause changes in the part of the nervous system that automatically controls bodily functions. - During seizure activity I have to urinate, and if I can't make it to the bathroom it makes me nauseous to the point where I feel like I might defecate. Dan has even had to pull over to the side of a rural road once and help me pee behind the bushes. It's a dire situation in the moment. For those familiar with me you know that I am very private about bathroom stuff so that was mortifying. To be that vulnerable, essentially helpless, is degrading. As of yet I have had zero accidents in my pants, and I focus that on that 100% success rate. Pretty proud of that.
• These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; sweating; or goose bumps. - I always thought that the heart rate, sweating, and goosebumps were just an automatic fight or flight situation, I didn't know that that was actually part of the seizure. In the moment I need lots and lots of ice water to cool down, then I start sweating, and get chills, and goosebumps all over. Then all of the tensed muscles in my body release causing me to essentially collapse. It's very subtle, because usually I'm sitting or laying down  (in anticipation) but regardless, it's exhausting.

Psychic seizures:

• These seizures change how people think, feel, or experience things. - When I'm in a seizure I feel like I'm in another world, a state where I'm on Earth, and in the room, but I'm also omnipresent.
• They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. - Often my seizures occur while I'm reading, or talking, and I can't understand why the words don't make sense. I have the sensation that the written symbols mean something, but I can't figure out how to comprehend what I'm looking at. Or I can see that someone is speaking to me, but it's as if they're speaking in a foreign language. Then I realize I'm about to have a seizure. I didn't realize that I was already in a seizure at that point, I thought that part was just an aura.
• They may suddenly feel emotions like fear, depression, or happiness with no outside reason. - For me it's deep remorse, and embarrassment. About 50-75% of the time I cry. I apologize over and over to whomever is around.
• Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar). - We have all had the sensation of deja vu, but it's different. I can tell the different between a deja vu in normal life and a deja vu during seizure activity. It's as if they're both fruits, but one is an apple and one is an orange. It's unexplainable, but there are clear differences. 

Who is at risk for simple partial seizures?
Anybody can get them. They may be more likely in people who have had a head injury, brain infection, stroke, or brain tumor but most of the time the cause is unknown.

What is it like to have a simple partial seizure?
When people have simple partial seizures, they are fully awake, alert and able to interact throughout the seizure. Overall, these seizures are brief lasting less than 2 minutes
Medical disorders such as, stomach disorders or a pinched nerve can cause some similar symptoms. Hallucinations can accompany psychiatric illness or the use of certain drugs. And some symptoms (such as déja vu) are experienced by almost everyone at some time. Whether the symptoms represent simple partial seizures depends on how often they occur and whether they are associated with other episodic changes or other seizure types.

What happens after a simple partial seizure?
When a simple partial seizure ends, the person more often than not simply continues doing whatever they were doing before it started. If the simple partial seizure is an aura (a warning) a stronger seizure with loss of consciousness may follow. No first aid is needed for a simple partial seizure. - My simple partial seizures are the first step. If I can get to a cool, dark, quiet place and lay down with lots of ice water and my pills, I can stop the progression. If I don't stop it in time it will progress to a grand mal or other type of more severe seizure. 

How can I tell if someone is having a simple partial seizure?
Because the person is fully alert and able to interact, someone may not be able to tell when a person is having a simple partial seizure unless the person tells them. - Unless someone asks me a question and I look confused, or am unable to respond, people will not know I'm having a seizure. I always warn those around me when it's happening so that they know that I need help.

How are simple partial seizures treated?
There are several medicines, a device (Vagus nerve stimulator), surgery and diet that can help prevent further simple partial seizures from occurring. - Unfortunately (or fortunately) I do notice a decrease in seizure activity when I remove carbohydrates. If I focus on eating lots of healthy fats like avocados, nuts, meats, vegetables, and lots of water, my brain is much more clear and seizure activity remains low. It's not fail safe, but it definitely helps.

The Abyss

I broke through the cloud this morning, so I write. My brain, my brain escapes me. The elusive bandit comes and goes, leaving me at times incapable of understanding written words. It seems worse these days, and instead of wallowing in fear, I just avoid blogging, reading, emailing, researching. It's probably just seizure activity which, of course, has halted my driving, limiting my independence yet again. 

I haven't been trusting my brain to be around people much, just an hour or two at two different baby showers over the past two weeks. I refused to miss them, but was nervous throughout that I could lose control of my brain, therefore hijacking the party. That's the number one reason why I avoid events, I don't want to cause a scene, or distract from whatever is being celebrated. It's mortifying. Even typing right now is tricky. The spelling of words isn't naturally registering. Thankfully spell check occurs.

Technically, I'm still coming down from the seizure a few weeks ago, and I've had an aura since then. With all of the scrambled electrical currents in my brain, it's no surprise that I'm having problems, but there is always a hovering fear of tumor growth as a possible cause as well. Especially since my diet has been more off than on. The guilt and the fear compound which makes me wonder why the hell I eat sugar in the first place. Then I remind myself that sugar is addictive, and it stimulates pleasure centers in the brain so of course I would want it. Damn sugar devil. I wish it didn't exist. Life would certainly be easier. What a double whammy that the delicious sweet stuff feeds cancer. To trick your body into thinking sugar is a good thing (poor hijacked endorphins). Jerk.

My next MRI should be Saturday May 31st. Thus begins the final month of trying to play it cool, trying not to panic, reminding myself that if the tumor grows it is not the end of my life (not immediately anyway); it's just a time to try new additional tricks and treatments. 

Before I can spend much energy on the results of the next MRI, I'm stuck saddled with the confusion of why my brain doesn't always recognize my hands and arms, or words. I'm in a daily haze, trapped inside the depths of my own grey matter abyss. It is isolating. If not for Dan's patience, and our shared sense of dark humor, we would probably be losing it. Instead, we laugh, and laugh, even when I'm too tired, or dizzy, as he scoops me up and carries me to bed.

Between the bouts of mental less-capacity (I'm making that phrase up, but it suits), Dan and I have gently, slowly, made it to the gym the past two days. What I noticed the first day, after lifting weights, was that I could feel the blood pumping in my right hand. You remember that guy, right? The numb hand I roll around with? Anyway, it was very comforting to have a physical breakthrough during a time when my comprehension of things, and mental acuity are faded. These waves of complete capability to barely being able to function could just be my new normal. And I try to remind myself of that. That this could be my life, a continuous roller coaster ride of comprehension or lack thereof, but it will never cease to surprise me when I'm unable to take care of things. It will always make me fearful when even my inner dialog remains scrambled, beyond my best efforts. To not understand the voice inside my mind, to lose that most basic navigation, is humbling, and makes me feel elementary, simple, obtuse. Sometimes I literally feel like Alice falling through the rabbit hole, just falling and falling, flailing my arms through the air in the darkness. 

So forgive me for those who email and call or text, I am just treading water these days and can't even remember to breathe regularly. As my grandmother loves to say, "This too shall pass." And I'm sure it will. At least a reprieve of sorts will occur. It's the nature of the game, the ebbs and flows. For now I need to rest. 

The view from our chaise (which is technically part of our couch, but we divided it and now I have the perfect little cozy nook). Our happy little triangle park, so gorgeous, full of blossoms. I never tire from looking.