The depression they treated with medication for a while, which just made things worse. The medication made her emotionally numb and drugged all day long. Consequently the kids often just ran wild around the house exploring and also trying to get attention.
The fatigue they did all sorts of research on, but found nothing. They tested thyroid and gallbladder and any number of different organs and they all checked out as normal. They did a sleep test and said everything was fine, except maybe a little twitching in the leg, which after everything else I am thinking they didn't pay attention correctly to what the symptom was. She have had several ultrasounds of various organs and parts of the body. She has had a few MRIs to look at different areas of the brain. She has chest x-rays, EKGs, stress tests, many blood tests. Most everything was "normal".
Several times they checked her heart do to weakness in the body or chest pains.
We were thinking maybe it was Fibromyalgia at one point.
She has also had memory loss and for lack of a better term ditsiness. Both of which we just blew off as being blonde or whatever and didn't think much of it, other than it was frustrating at times. It turned out that these symptoms were probably related too.
Finally after years one doctor sent us to a neurologist. They did an EEG on her and still just barely saw anything, but for the most part it was normal. By her symptoms and what he slightly saw on the EEG he figured she was having seizures and diagnosed her with epilepsy. They did an MRI and could not find the lesion that would cause the seizures.
As she has thought about it she thinks there are two possibilities as to what caused it. She recalled that when she was a child she was being pulled behind a vehicle in the snow on a tube or a sled with her uncle. They rolled off the sled in order to avoid hitting a puddle and her head went into a tree. She recalls being out of it for a few days after that, but seemed to recover fine.
The other incident was as a passenger in the front seat of a car, years after the tree incident, the driver hit the breaks hard and she recalls hitting her head on the dash board or windshield.
It has been very frustrating trying to find the right diagnosis and subsequently the right treatment. It has also been hard for her to not be able to function like she wants to, being tired and sore all the time.
Most of her seizures have been at night or in ways that we didn't recognize as seizures. Lately we have noticed things before bed time happening and it has been very frustrating and scary for her to not be in control of her body.
Before we knew what was happening she would sometimes start laughing for no reason and we would ask her what was so funny and she didn't know and then she would cry, also for no apparent reason. She would also at time space out for a few seconds and we would have to repeat things to her.
Now she does that a little more frequently and it is a bit more noticeable. She also will sometimes twitch her right hand or arm, but lately once in a while both sides jerk. They are quick jerks and then a pause and then a quick jerk or some other symptom. Sometimes she will stretch her head forward and make a pucker face. Sometimes her eyes will roll back in her head for a moment. This sort of thing will go on for an hour or so at times. Not a constant seizure, but several small quick ones.
Once she was eating something and she couldn't chew, nor could she respond to our asking what was wrong. Not because she was choking or anything, but just because she was seized up. We would be talking to her and she was aware of what we were saying, but could not respond. Tears would just begin to stream down her face.
Her triggers seem to be fatigue, evening time, and light. Like clock work around 7 at night things start up with her feeling seizures coming on.
To combat the trigger of light she has gotten some big sunglasses and a brimmed hat. She found that being in stores for very long would trigger a seizure later in the day. The same things with lighting in our home and at church and also with looking at a TV or computer monitor.
She feels self conscious wearing sunglasses everywhere in doors, especially big ones, but they seem to be helping. She frequently gets comments from people that find it difficult to talk to her through sunglasses or or ask if she had her eyes dilated that day or that she must be all ready for summer or that she looks all Hollywood. I myself thought they reminded me of glasses I have seen Yoko Ono wearing before.
Possibly related to the light issue is that she finds that using a colored overlay when reading a book helps her. It appears from research we have done that each person is different on what color overlay works best for them. We are finding that the overlays may be helping our kids reading and each one of them needs a different color.
She has tried several medications. Most of them, if she took them morning and night would keep her knocked out all day, so she just takes her medication at night now. Others would give her intense anxiety. Others would drop her blood pressure and temperature. After some of those she had another MRI to check to see if the thermostat in the brain was damaged, but everything was "normal". She has always run a little cold and had blood pressure on the low side within the normal spectrum, but the meds dropped her into danger zones in both temperature and blood pressure.
She is current taking generic Keppra. Sometimes it works fantastic and she sleeps through the night with no seizures. Most nights she wakes up around three or four in the morning and can't fall back to sleep. Perhaps she has had a seizure. She is generally exhausted the next day.
Sometime when she wakes up in the middle of the night she has an intense craving for milk. We heard one source say that milk is not good for epileptics. We are not sure what to make of the cravings. Maybe her body is needing more Calcium or Vitamin D or something in milk, even if she shouldn't have the other stuff that is in milk that might cause epilepsy complications.
She has found a community at http://www.epilepsyfoundation.org/ where she has been gathering information and also feeling support for others having common experiences. She has also enjoyed being a strength to others who have been feeling down because of going through it themselves or because of having a child that has epilepsy.
She has generally been shy about sharing personal things on the internet, other than the casual Facebook use, so I was surprised recently when she suggested that she might want to put a video up on YouTube about her experience with Epilepsy. I have included the video below.
We have found through this process that we have to do most of the research ourselves and present a plan to the doctors on what we want to do. We found that for the years that we tried to find out what the problem was. At times we resigned that no one knew and we stopped going to doctors to pursue it and then things would get worse and we would start again. Sometimes during the process the doctors would forget where we had been and start over with us. I think one of the first things we went in for was headaches and when we presented to the doctor we had been going to for a while a possible diagnosis, she told my wife it couldn't be that because she would be having headaches if it was that. That was very frustrating to have been walking down this road with a doctor and have it made clear to us that no one was researching the problem except the five minutes were speaking to them when we came in and the only thing they were working on was the symptom we had brought to them that day and not the ones we had previously come in with that had no gone away.
It is best to keep a record of which medications you have been on and what dosage and why you were taking off of them (side effects and what not). We have had times where the doctor did not know what medications we had taken previously even though they had prescribed them. We also found that some medication that had been prescribed during the day that were unacceptable, were worth trying as a nighttime medication. Without documenting what the side effects were we wouldn't know if we should suggest going back to it.
We have found that due to the memory problem that can be associated with Epilepsy and with Epilepsy medication my wife has to try various things to remind herself of what is going on during the day and even when to take her medication. We have different medication containers for day and night and for each day of the week, so she can visually see that she has already taken them. Even with that occasionally she gets the blue container mixed up with the orange or whatever colors we are using and also sometimes get days of the week messed up.
Recently I saw someone post on Facebook about people being sensitive to chewing or other noises and that someone has given it a name, Misophonia. The headline stated that it can cause rage. I thought the wording was very inflammatory, which I think is the trick publishers use to drive views these days. Nonetheless, for years my wife has tended to get irritable and somewhat irrational when someone is eating an apple in the same room as her or chewing gum or various other noises. I am wondering if it is related to the Epilepsy. It seems to get worse when she is on the verge of having a seizure. At those times she is very sensitive to noise or having her chair bumped or any sort of disturbance.
Update 17 Jan 2012
We are now finding that what was once diagnosed as Epilepsy is now likely