Frustrations

I have been to countless doctors and had countless tests to get a diagnosis for my seizures… with NO luck.

My GP thinks I’m nuts… My first neurologist was willing to try medication but he moved away and left me in the hands of another neurologist. THIS neurologist suggested I go to therapy. I beg your pardon, sir, but I’ve already got my shit together, thanks. I don’t need to pay someone to tell me how I’m feeling and why. I think I’ve got that under control far more than many of the other people in this world. Do you get some kind of a commission for referring people to therapists? jeeze.

My current neuro not only thought I should try therapy, but also that I should continue “dancing” (as I told him I like to dance for fun [ like to footloose!]).

I don’t have a problem with dancing, not at all, in fact, I was doing it today. And guess what… I had a SEIZURE.

Everyone who thinks it is caused by my excessive caffeine consumption… I haven’t had ANY caffeine in OVER two weeks, so…. I don’t think that’s it.

Today is the second day in a row during which I’ve had a seizure. I had one yesterday, too. And the past few times I’ve had them, it’s only been once per day rather than 5-7 times a day.

I guess that’s good, but god effing damned if I’m not frustrated as all hell.

I’m going to the hospital for 5 days in mid December for a Video EEG. I will be confined to my hospital room… hooray.

I’m just SO frustrated that it has been almost a YEAR since these things started and STILL no one can give me any answers.

And no, I can’t avoid the activites I’m doing when they happen… If I did that I would have to stop: Dancing, Showering, Looking at Calendars, Attending Class, Running Errands, Getting Juice, Entering my Kitchen and/or Bathroom.

Just not practical I tell you!

 

ughhhh….. sorry, needed to vent.

 

Seasonal Seizures

I’m beginning to think that my seizure correlate with the seasons.

During the Spring and Summer I was basically seizure free. Now that it’s starting to get cold again, I’ve been having them, and when I do have them, I have several a day. I’ve had two today in a 5 hour span.  I believe I’ve had 7 in the past 3 weeks.

They started happening in December of last year… and they were pretty frequent up until Spring, when the weather started improving.

I don’t know but they’re really affecting my mood and energy levels now. I get either really upset, over emotional, irritable, or I get extremely lethargic. After the last seizure I had today, about an hour ago, I’ve been extremely tired with a dull yet persistent headache.

Want to know what sucks about having the seizures today? I’m scheduled for a 24hr EEG in exactly ONE week to try to catch one. Think I’ll have one then? Probably not.

I would REALLY, REALLY like to get these things under control because I’m so beyond frustrated at this point.

Not out of the woods

I haven’t been having seizures for several months now. It has been almost a year since they started happening.

I find it a bit ironic that today, just a few weeks before my neurologist moves to Florida, my brain decides it would be good for me to have not one, not two, but THREE seizures.

I had one while taking a shower, one while getting ready, and the third while going to school.

And I forgot how much they take out of me. I have been dragging ever since.

I got my hopes up when they stopped happening. I shouldn’t have.

Maybe my MRI results will show something helpful, but I won’t know until October 1st.

Getting Somewhere

After months of no action, I’m finally starting to get somewhere with these seizures. My mom saw me for the first time right after a seizure yesterday and decided to take matters into her own hands. (Just one of the many reasons why I love her). She’s been making calls to all sorts of people, the insurance company, my GP, neurologists… and getting me an appointment with a neurologist ASAP (maybe even next Thursday if I’m lucky). So with any luck I’ll get my diagnosis and treatment in the next few weeks. Keep your fingers crossed… I am.

Thanks Mom <3

Seizure Calendars

Obviously I spend a lot of what little free time I have researching Temporal Lobe Epilepsy.

More recently I have been focusing on specific triggers.

I have found that many people experience a seizure during or directly after a sneeze. (A relief in some weird way)
Of course lights are a giant trigger for seizures, even in some people without epilepsy or a seizure disorder.

I have not found one single case, however, of a seizure triggered by a calendar. I have had numerous seizures triggered by looking at calendars. I had one this morning.

I find it ironic that most people, doctors included, recommend keeping a seizure calendar and recording what triggers the seizure on any given day. (And yes, I know you can do that without using a legitimate calendar… but still, it’s a bit ironic, isn’t it?)

More reasons to hate seizures

I’ve never been one to “fear” things. I love scary places, movies, etc. That’s one reason why I’m really pissed off about this whole Temporal Lobe Epilepsy thing.

The seizures I have are not pleasant. They leave me feeling uncomfortable and anxious.

As a result, I’m sort of starting to “fear” the things that trigger them. Opening the refrigerator, turning on the lights, sneezing, hearing other people sneeze, looking at a calendar, being in the sun, bright moonlight… sometimes even just waking up in the morning.

All these things are basically unavoidable, which is why I’m so upset about my IDIOT doctor not taking me seriously. I don’t need the runaround here. I need treatment. In order for treatment, I need SOMEONE to listen to me.

I don’t want to be one of those people who’s afraid to live. I don’t want to have to hope every time I want some juice or need to write a date on the calendar that I’m not going to go into an epileptic fit. It’s gotten to be ridiculous.

Doctors are Idiots

Doctors are idiots.
Okay, so not ALL doctors, just the ones I go to apparently.
I went to the doctor specifically to discuss the possibility of having Temporal Lobe Epilepsy (because I am 96% sure I do indeed have it). Of course in the back of my mind I expected to be looked at like I’m crazy. (Click the link and you’ll probably see why.) I was hoping, however, that these were just silly thoughts and a medical professional would take me seriously. WRONG.
I tried explaining what happens to me during a seizure to the best of my ability. I was greeted with an expressionless stare and the occasional “mmhmmm”.
Finally after I got tired of trying to make this woman understand something she’d obviously never heard of before (don’t they teach you these things in Med School? I don’t know I’m not a doctor), she decided to focus on something much more generic: Headaches.
Yes, I get headaches, so does everyone else in the world. Yes I get migraines sometimes. That’s not why I’m here today.
“I think you’re getting these headaches because your life is too stressful. I want you to try to avoid stress. Don’t go out in the sunlight. Don’t eat any food with MSG. Don’t skip any meals. Don’t eat any cured meats. Don’t take any medicine to HELP the headache. Instead, try taking a walk or listening to music. Maybe you should do yoga. Keep a diary for 6 weeks and then come back and we’ll see how you are.” “Oh and we need to take some blood.” (yeah try 6 vials worth). Taking blood doesn’t trick me into thinking you have the slightest idea what you’re doing.
Idiot.
If I wanted some bullshit advice like taking a walk or listening to music I would have gone to a homeopathic doctor. I wanted a DIAGNOSIS and TREATMENT for these SEIZURES I’ve been having for the past 3 months.
Uh oh, I’m getting stressed; I better go write in my diary.
Idiot.