Monday, May 12, 2014

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.

4 comments:

  1. Jess, I too have seizures. I have been on medication for years. Took me 2 years to get regulated if you start meds, I can help you sort things out. The other thing I had and have been having is good old vertigo scares the hell out of you at first because you think there is a recurrence, it has been since 2008 since my last tumor. 6 surgeries and a bike accident with no helmet put me at high risk for epilepsy.\
    Here is more info on vertigo.
    http://www.webmd.com/brain/tc/dizziness-lightheadedness-and-vertigo-topic-overview

    John, I mean Ben(whatever you would like to call me)

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    1. Ha! Oops, I'm so sorry! Blame it on the tumor? Thank you for the info on vertigo. Very helpful!

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  2. Hi Jessica. After my son was born in 2005 I started experiencing the smell of cigarette smoke everywhere I went, even in my car with the windows rolled up! It could last days or weeks and it would always be there. The doctors now say it was most likely seizures but I don't understand how a seizure could last days or weeks with no break, but obviously it had something to do with my tumor because it hasn't happened since I was diagnosed. Very strange. I researched seizure dogs when I was really bad of but you have to be having them everyday and they have to be able to test the dogs with you while you are having one and mine were very unpredictable, so it wasn't going to be possible for me. It sounds like you are having them frequently. It sounds like a good option for you. My next MRI is on the 27th, close to yours. Good luck to us both!

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    Replies
    1. Isn't the phenomena of seizures amazing! Good luck at your MRI, I'll be thinking of you. Xx

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