Thursday, July 26, 2018

My EEG Experience (part 2)

So...here are more thoughts about my EEG worries (that I mentioned in a previous post)


Wishing For Symptoms

An EEG works best if you actually have the symptoms that concern you. I have symptoms every day, but on some days, I have hardly any symptoms and on other days, I have a lot.

With the myoclonus, I got the idea that the level of the symptoms were connected to my menstrual cycle.  It seemed like I was at a low level the week of my period and the week after; then things would be more intense in the two weeks after that.

BUT...then I changed birth control.  Instead of having two weeks high and two weeks low, it seemed to be close to off.  I had tiny bits of myoclonus just a few times a day. It was close to nothing.

This was a bit confusing and frustrating, because it was at that time that I had my neurologist appointment.

Should you go to the doctor if your symptoms have disappeared or greatly reduced?

I decided to keep the appointment, since a) I was still having SOME symptoms b) I didn't know if the level of symptoms might change again.  I figured maybe this birth control hadn't reduced my symptoms. Maybe it had just changed the schedule.

Sure enough. Soon after the doctor appointment, the myoclonus became more frequent. And now it seemed instead of two weeks on, two weeks off, I was on a schedule of one month off and one month on.

Though I wasn't quite sure about it, since I hadn't been on the pills long enough to know the actual pattern of it all.

But I worried that during the EEG, I wouldn't have enough symptoms, and the whole thing would end up being a waste of time and money.

I decided to do what I could to increase the symptoms.

I did a lot of Googling and learned how female hormones effect epilepsy. Apparently, estrogen increases the change of seizures and progestin decreases. Therefore I wanted to increase my estrogen.

I did more Googling in hopes I could find foods and drinks that might help me.

It was confusing, and I realized that some of the websites I was consulting seemed to be a bit of the pseudoscience sort.  No...NOT the ones about epilepsy and hormones. I think those are legit. But the ones about food.....

Well, some of it seemed to be legit.

The conclusion I eventually came to was that soy might help me increase estrogen, and green tea might reduce it.

So for the weeks leading up to the test, I ate a lot of edamame and soy ice-cream and I avoided green tea.

Oh, and I also ate licorice, because...well, I guess I read something that convinced me this would work. 

Now when I say I ate a lot of soy, it's not like I overdosed. I probably ate what's normal for person in Asia and/or who's vegetarian.

I guess what I'd say is I didn't eat servings that were larger than usual.  I just made sure to eat soy every day.  During other times, soy is more of a maybe thing.  I eat it when I'm in the mood or we order from an Asian restaurant.

Anyway....

I'm not sure if my symptoms are truly related to my hormones. Nor do I know if the special diet worked.

But symptom-wise, things worked out quite well for me.

This could be because I DO have epilepsy, hormones play a part, and the foods I ate helped manipulate that. Or it could be a coincidence. Or it could have been some kind of placebo effect.

Either way....

I had a fair bit of myoclonus during the test. I don't think it's the most I've had, but it was enough to prevent me from thinking, Why the hell did I get this test when all I have is a few twitches now and then.

The crazily good thing is that on Wednesday I had major symptoms.

I have other symptoms besides the myoclonus. One of them is the worst symptom I have, but I fortunately don't have it too often.  This is where I get this weird/bad feeling which sometimes leads to a 1-2 minute episode where I spit up huge amounts of saliva.  I've had this for years and have had no idea what the hell it is. I don't think I ever suspected epilepsy. But when I started looking into epilepsy because of the myoclonus. I started wondering if these episodes could be a type of seizure. Then recently I found an article about a man with symptoms that are somewhat similar to what I experience. And it turns out he has epilepsy.

I hadn't had an episode since April, so having one for the test seemed kind of lucky. Usually I hate having the episodes, but with this particular episode, I felt I had hit the jackpot.

AND another one of my brainy symptoms is hallucinations. I have had audio ones, usually when just waking up from sleep.  But I hadn't had one in several months. On Wednesday night I had one.  So that was cool.

The good thing about having symptoms is I can get a more accurate diagnosis.

I can find out if the symptoms are epileptic seizures...or if they're something else. Mental issues? Our house is haunted? I'm possessed? I'm an alien disguised as a human?  Those kinds of things.

If I didn't have all these symptoms, I'd be less satisfied with the results of the test. If it comes out negative, I might think, Well...so that myoclonus isn't epilepsy, but how about the spitting episode?

Financial Issues 

We're American, so we don't just have to worry about having health problems. We have to worry about having a financial disaster each time we have a health problem.

The (maybe) good news is that, with our current insurance, we chose to pay a high monthly fee and get a low deductible.  With my MRI and some tests that Tim had done, we've already met our deductible.

I'm not sure if this means all our future tests this year are free; or if we have to pay a copayment percentage.  If I lived in a country with reasonable healthcare prices, the latter wouldn't be so worrisome. But in the US, you don't know what kind of price tag you're going to see.  The doctor's office could decide they want to charge $30,000 for the EEG.  And even if the insurance pays 80%, we'd still be stuck with a $6000 bill.

I'm thinking we should have asked the price of the EEG. We did make sure that the doctor's office checked to see if it would be covered by insurance. But we didn't ask the actual price.

Well, I just read something that made me feel a bit reassured.  This website says, without insurance, a 24 EEG would cost about $3000. So that might be $9000 for three days. If our copayment is 20% that would give us a price tag of $1800.

And that kind of sucks, because we could buy some good plane tickets with that money.  BUT...it's better than some situations.

Now that I think of it, I think WE did ask Victor, the tech guy, how much it would cost. This, though, was when he was already at our house with the equipment. I wanted to know the difference between the EEG without video and with.

Unfortunately I don't remember his answer. I think I was too busy being annoyed that they seemed to be pushing the video on me. 

Cats

I had a slight worry that Yeti and Annie would be scared of the wired version of me.

Fortunately, the cats ended up being totally fine.

They didn't treat me any differently.

I still got an ample supply of feline-affection.

The other worry was that the cats would chew on the colorful wires. They didn't.

Yeti went after the backpack straps a couple of times. That's about it.

REMOVAL

The wires were attached to my scalp with glue.

I assumed Victor would put the stuff on AND take it off.

The day Victor came to put it on, I learned I would be taking it off.

He said we should use coconut oil or acetone.

I had this bad feeling that the removal would be easier said than done.

It ended up not being so terrible.

The best thing is Tim was absolutely wonderful. I expected to have to go at it alone, but he insisted on helping. He actually did more work than me...at least in the initial stages.

Well...and he he Googled to get insight and instructions about the situation. And I hadn't. (which is so uncharacteristic of me!)

I'm thinking...

You know that whole love language thing?

Maybe Google is my love language.

I think if someone Googles to learn more about me or something I'm enduring, it's a sign of love.

Or at least it shows they care or are interested.

So anyway....

Tim Googled. He helped put the coconut oil in my hair, and he helped pull off the tape and wires.

Getting the wires off my head went smoothly.

Getting the actual glue out of my scalp was a little more difficult.

A little came off in the shower. A lot came off when I brushed my hair. Quite a bit stayed in my hair.

Another issue: I put too much coconut oil in my hair and didn't do a good job removing it.  I didn't quite realize this until hours later when I saw my hair still looked wet. I realized my hair wasn't wet with water. It was still soaked with coconut oil.  This is probably also about the time that I realized I still had quite a bit of glue in my hair. It looked like dandruff, and we had gone out to dinner with me like this.  I wonder if the waitress noticed!  Hopefully she wasn't the most observant person, and hopefully it was at the level where you'd have to look close at my scalp to see.

Now I'm four showers past the ordeal. My hair is soft rather than greasy I don't see any more glue, and my scalp is less sensitive (it had been a bit sore this past weekend).

Negative Isn't Always Completely Positive 

When you have a medical test, it seems the proper thing to do is hope and pray that it comes out negative.

Yet there is a big part of me that would prefer the test to come out positive.

Judging from what I've read on message boards, I'm not alone.

I think if you're having symptoms, there's relief in knowing that there's physical evidence proving that these symptoms are real.

When I go to the doctor...if she says, your tests came out completely normal, I think I'm going to be embarrassed.

I'll be embarrassed that I told my family about my issues.

I'll be embarrassed that I got angry at some members of my family for not acting like they cared that much.

I'll be embarrassed that I blogged about it.

I'll be embarrassed that I went to the doctor's office for it.

I'll be embarrassed that I paid for all these tests.

Faking vs. Emotional Distress

When I first learned that my symptoms might be psychological, I was quite upset.

Slowly as I read more and more, I started to accept the whole idea.

I think one problem a lot of us have is that we blame ourselves for things that are not our fault.

Even if the issue is biological/medical, I think there can be some shame.  I remember in high school being petrified when I had to be tested for diabetes.  I'm sure some of the fear was about potential treatments and lifestyle changes. But I'm guessing a lot of the fear was also about shame. Stigma.

Even with basic things we feel embarrassment or shame. We're embarrassed if we have to shit in a public toilet. We're embarrassed when we fart. We're embarrassed about our periods.

So no. I don't think it will be that surprising if I end up being embarrassed or ashamed about having a psychogenic disorder.  And I don't think I should feel ashamed for feeling ashamed.

But I AM working on being less ashamed.

One thing I have told myself is that I can NOT control my self-conscious mind.  And if this is a psychological disorder, the subconscious mind is what's causing the symptoms.

 It would be kind of like dreaming.  Just as I can't tell myself NOT to dream about a certain person, I also can't tell my toes, shoulders, legs, arms, face, etc. to not move.

This whole dream comparison. Well, when I thought it up, I thought this is how I'd explain things to my family. And then MAYBE they'd understand.

But I'm trying to come to terms with the likelihood that no matter how many analogies I provide and no matter how many articles I send, my family is going to feel that I've been faking it for attention. They're going to think I'm being overdramatic and silly.

For those who are reading this and think I should be more positive...I'll just say that it's already happened to some degree.

I told one family member that there's a chance it could be psychological. The response was something like, I don't get it! Why would you fake it? 

I tried to explain that I wasn't faking it, but I don't think I got through to the family member.

Also....

There's the fact that when I told my mom I was worried about having an eating disorder relapse if I went on a diet, she scoffed at the whole thing and told me I never had an eating disorder.  She said people with eating disorders are in the hospital and weigh 40 pounds. She said I had just been yo-yo dieting.

It hurts to not be believed. It hurts to not be taken seriously.

I have had a lifetime of psychological invalidation. When trying to communicate my fears, needs, thoughts, emotions, etc...I've so often been giving the message that I'm too dramatic, too silly, too picky, too negative, too sensitive, etc.

So with all that, I can't be expected to expect my family to be understanding.

And also with all that, I can't say I'd be surprised to get a psychological diagnosis.

My brain waves might be okay.  But all this invalidation and other shit has really fucked up my head.

Even if I get diagnosed with epilepsy, I am pretty sure that some of my symptoms ARE psychogenic.

Medication Fears

If my EEG comes out positive, I'll have the wonderful validation that comes from having a real medical disorder that can be detected with tests.

But if that happens, I'll probably have to go on medication.

Medication costs money.  So that's one shitty thing. Though I think insurance will help a bit with that. Hopefully.

What bothers me most about medicine is the side effects.

Sometimes I read about side effects and I think, what the hell? I don't get it. The side effects sound worse, or just as bad, as the original symptoms!

Early on in this myoclonus drama, I thought to myself that I would fight against being medicated. The exception would be if taking medicine could prevent the problems from getting worse.  If all I have is some mild twitching and jerking, I think I'd prefer that over drowsiness, fatigue, vomiting, weight gain, liver problems, rashes, headache, etc.

BUT I have other issues besides the myoclonus and if those issues are seizures, that's another story.

I have this thing where I wake up in the middle of the night and have this awful feeling of weirdness. I can't describe it well. This happens to me almost every night. If this is a seizure and medicine will put a stop to it, will it be worth enduring the possible side effects? Or should I just keep my own problems and not trade them in for new ones?

Then there's winter. I've been starting to put the puzzle together. Whatever I have, it seems to get worse then I'm cold.  It seems I feel awful all winter from later afternoon onwards.  If that comes from messed up brain circuitry, I should probably say yes to the medication. I should probably skip the fight against it.

 It's when I think about all this that I start to think the psychogenic diagnosis might not be so bad after all.  I can skip the medicine and just hope that my subconscious stops trying to mess with me. Maybe I'll get some therapy to help with the process.

The Scary Stuff

When the myoclonus began, I considered some scary, fatal possibilities—brain cancer, Creutzfeldt-Jacob disease, Multiple System Atrophy, etc.

As months went by and I didn't spiral into a dreadful, scary level of disability, it seemed likely I didn't have the worst things out there.

After I had the MRI and didn't hear anything back from the doctor, it seemed reasonable to also rule out moderately dreadful stuff like MS and benign slow-growing brain tumors.

Then a few weeks ago, I was looking for information on myoclonus and EEG reports and I ended up reading a bit about the progressive myoclonic epilepsies.  I had seen them mentioned before, but for some reason I kind of skipped over it.  I think I thought it was something that happened to children, and since I was an adult this seemed unlikely to be the diagnosis.

But I learned recently that it can happen to adults.

The thing that stops me from totally freaking out is that these diseases are rare.

But that's not 100% reassuring. Because rare is not impossible.

What scares me the most about it is the genetic aspects. And that's all I'm going to say there because it's something I don't like to think about...or write about.

Diagnostic Mistakes

This would all be easier if I had 100% faith in doctors and medical technicians.

But I don't.

I'm a bit paranoid...partly because I'm a distrustful person and mostly because I've read horror stories.

My mind is swimming with what-ifs.

What if I have a tumor and it was too hard to see on the MRI because the imagining center didn't use contrast?

What if I have something serious on my MRI, and the results were misplaced?

What if the technician is playing a video game while looking at my EEG results and misses something?

What if something is seen on the MRI or EEG, but it's small, and the doctor decides it doesn't need to be mentioned.  I'll think I have a psychogenic problem until years later I end up getting another MRI and learn I had a problem growing all this time.

What if, because of medical misogyny, my tests are given little attention because it's assumed I'm just a typical woman with hysteria.

What if I don't have epilepsy, but something is over-interpreted, and I end up having to take medications I don't need?

I think I worry less about a false positive, because I've educated myself enough to fight back against that.

For example, I would know not to accept a diagnosis of epilepsy based on symptoms alone.  I feel lucky to be aware that some seizures-like episodes are actually psychological.  If the doctor ended up saying something like, Well, you're EEG came out negative but with these symptoms you're having, I'm still guessing it's epilepsy.  Let's try this medication here; I think I'd have the knowledge and courage to speak up and argue.

I can't say I'd have the courage to say things like, Are you sure you read my EEG carefully enough? Are you sure those were my MRI results?  Could you have gotten the wrong ones?  Are you sure there's not anything strange on my MRI that you're keeping secret from me? 

Well, anyway...that's about it for now.

I shall hopefully have more information in the next few weeks. I might not fully trust the information, but at least I'll have it.