Here are the things that worried me most about my 72 hour EEG. And some things still have me worried, because the entire experience isn't over yet.
1. That the doctors, at DFW Neurology, would insist I'd have to be videotaped during the EEG
2. That I'd feel absolutely disgusting because I wouldn't be allowed to take a shower for 72 hours.
3. That I'd not have enough of my symptoms during the EGG
4. That the EEG would end up being ridiculously expensive, and our wallets and bank accounts would be much thinner.
5. That my cats would be afraid of me while I was wearing all these wires.
6. That I'd have a horribly difficult time removing the wires and glue from my hair
7. That after all this drama, my test would will come out negative. I'll be stuck with mysterious symptoms that are probably "all in my head".
8. That if my symptoms are psychological, my family won't accept or understand that it's out of my control; that they'll believe I've made it all up.
9. That the test would come out positive and I'll end up having to take medication that gives me dreadful side effects.
10. That I'll end up having a horrible epilepsy that gets worse and worse. And worse than those worses; the epilepsy ends up being genetic and some of my genetic-loved-ones get the disease as well.
11. That my EEG report won't be read carefully, and I'll get a false positive or a false negative.
And now I'm going to blab on and on about all these things.
The Video EEG
When Dr. de Jesus suggested I get a 72 hour EEG, I was so relieved that she wanted me to have an EEG, in the first place, and that I was skipping the routine EEG; I didn't pay attention to the video bit.
One of my fears (that I forgot to mention above and I'm too lazy to mess with renumbering) is that I'd encounter a doctor who was completely dismissive and would assume, without any testing, that I have a psychogenic problem.
The first neurologist I saw wasn't dismissive and ordered a routine EEG. That was much better than nothing. But....
The problem with a routine EEG is there are a lot of false negatives. From what I've heard, the test is less than an hour. A lot of people don't have seizures on an hourly basis. I have hours where I don't have myoclonus.
Some people have weird brain waves even if they don't have a seizure during the test. But that's not the case for all.
I never had the routine EEG, because we switched insurances and switched doctors.
Doctor de Jesus jumped straight to the ambulatory EEG. I liked that.
It wasn't until hours or days later that I started remembering that the word "video" might have been included in the order.
I wasn't happy about that. I had told her my myoclonus is small. It's hard to see, and as far as I know, no one has noticed it. I'm not sure how a video would see it. Plus, a lot of the myoclonus happens in my toes. Unless they were going to point a camera at my feet, the camera would probably not pick up on anything.
Then I looked at DFW Neurology website and saw that they were promoting the fact that they now have video EEGs. I got this paranoid (or not) idea that the clinic had invested in these new machines and they now needed to find gullible patients to agree to using them.
The main reasons I didn't want a video EEG: invasion of privacy and wasted cost.
I don't want a tech hearing our family conversations. More importantly, I tend to have a lot of gas at night. I really didn't want to struggle to hold in all my farts in fear that a tech would end up hearing it all.
Though...now that I think of it, I'm not sure if the video also included audio. If it was silent, maybe it wouldn't have been so bad.
But still...I don't think there'd be anything to see.
Anyway I played about two weeks worth of email and phone tag with DFW Neurology and eventually got the assurance that I'd not have to have a video EEG.
Then, when Victor Remmers, the EEG tech, came to our house, he had the video device with him! Remmers said we didn't have to use it. But he felt better keeping it with the rest of the equipment. He wanted us to keep it at our house. We didn't need to turn it on.
I got very suspicious and started asking Remmers if we'd still have to pay for the video bit. He said something like, No. Don't worry. The insurance will take care of it. WTF?! I don't think the insurance is going to pay for the whole thing. Besides that...as much as I hate insurance companies, I don't think it's right for them to have to pay for unnecessary (and actually unused) tests. Right?
I did a bit more questioning. In the end, Remmers decided to take the video recorder back with him. My feeling is they DID plan to charge me for the test and then realized I wasn't going to be that easily scammed. Though he did say, at one point, that if the camera wasn't turned on, I wouldn't be charged. I HOPE that's the case. I hope they weren't trying to trick me and the insurance company into paying more than needed.
(Edited to add 7/11/19: Things turned out much worse than I would have ever expected. Read here for more info about that)
Three Days with No Shower
You are not allowed to take a shower during an EEG.
I was actually at an advantage here, because I take a shower every other day rather than every day. So I figured I'd have only one day of feeling gross rather than two days.
What about people who take multiple showers a day? They'd really be suffering!
I think, though, that I might have OCD-the contamination version. I wash my hands a lot and get grossed out by vomit, feces, and stuff like that. I also have come to the point where I worry I'm going to contaminate other people with my own stuff. Like I'll wash my hands if I just touch the edge of my nostril, and sometimes the same goes for when I rub my eye.
I also do this thing where I wash my hands, dry my hands with a towel; then worry I didn't wash my hands good enough, and put the towel in the laundry. Then I wash my hands again.
So yeah. I worried something gross would happen, and I'd have a huge need for a shower.
For example, if there was human vomiting...I'd need like 10 showers before I'd feel sort of clean again.
With cat vomiting, I can deal a bit better. But I'd still prefer a shower.
Well...anyway, it turned out okay.
I never felt contaminated enough that I needed a shower. I felt only slight bits of contamination and that mental state was relieved fairly well with wipes.
I think what also helped is I avoided cleaning jobs that would make me literally dirty. I think this happens when I do things like dusting. I think a bit of the dust ends up going on me, and I start to feel the literal dirt on my skin.
I also avoided sweating by doing much less stair-climbing exercises. And I cranked up the air-conditioning to avoid night sweats.
I really didn't feel too dirty by the third day. I thought I'd be rushing to take a shower, but it wasn't like that.
What WAS hard-but I survived-is the EEG backpack. The wires on my head were attached to a backpack that I could not separate from. I had to take that backpack into the bathroom with me. This might be fine with some people, but I'm the kind of person who doesn't want to wear my jacket in the bathroom because I'm afraid it will touch the toilet seat.
When I poo, if possible, I take off my shirt because I'm afraid I'm going to end up touching my shirt between the wiping and the hand washing.
Yeah. I'm that bad.
And now suddenly I had a backpack stuck on me. I had to wear it while on the toilet.
I'm proud to say I mentally survived the experience. And maybe in the long run, it made me stronger.
It did help to have wipes available. I'd wipe the backpack down after most bathroom trips.
On top of all that, I didn't have a complete nervous breakdown over the idea that this backpack very likely had accompanied other people on their bowel movement adventures. Sometimes I'd reassure myself with the idea that DFW Neurology decontaminates the backpack and equipment after each use. But knowing what I know about the medical profession and the spread of germs, I was pretty sure my reassurances were delusional.
So then I'd go the comparison route. How many times have I checked out library books that were once held by people taking a shit? Before my maybe-OCD got this bad, I even read library books on the toilet. I read most of Cold Mountain while suffering with a gastro illness. I don't think I cleaned the book before returning it to the library.
Anyway...to be continued.
1. That the doctors, at DFW Neurology, would insist I'd have to be videotaped during the EEG
2. That I'd feel absolutely disgusting because I wouldn't be allowed to take a shower for 72 hours.
3. That I'd not have enough of my symptoms during the EGG
4. That the EEG would end up being ridiculously expensive, and our wallets and bank accounts would be much thinner.
5. That my cats would be afraid of me while I was wearing all these wires.
6. That I'd have a horribly difficult time removing the wires and glue from my hair
7. That after all this drama, my test would will come out negative. I'll be stuck with mysterious symptoms that are probably "all in my head".
8. That if my symptoms are psychological, my family won't accept or understand that it's out of my control; that they'll believe I've made it all up.
9. That the test would come out positive and I'll end up having to take medication that gives me dreadful side effects.
10. That I'll end up having a horrible epilepsy that gets worse and worse. And worse than those worses; the epilepsy ends up being genetic and some of my genetic-loved-ones get the disease as well.
11. That my EEG report won't be read carefully, and I'll get a false positive or a false negative.
And now I'm going to blab on and on about all these things.
The Video EEG
When Dr. de Jesus suggested I get a 72 hour EEG, I was so relieved that she wanted me to have an EEG, in the first place, and that I was skipping the routine EEG; I didn't pay attention to the video bit.
One of my fears (that I forgot to mention above and I'm too lazy to mess with renumbering) is that I'd encounter a doctor who was completely dismissive and would assume, without any testing, that I have a psychogenic problem.
The first neurologist I saw wasn't dismissive and ordered a routine EEG. That was much better than nothing. But....
The problem with a routine EEG is there are a lot of false negatives. From what I've heard, the test is less than an hour. A lot of people don't have seizures on an hourly basis. I have hours where I don't have myoclonus.
Some people have weird brain waves even if they don't have a seizure during the test. But that's not the case for all.
I never had the routine EEG, because we switched insurances and switched doctors.
Doctor de Jesus jumped straight to the ambulatory EEG. I liked that.
It wasn't until hours or days later that I started remembering that the word "video" might have been included in the order.
I wasn't happy about that. I had told her my myoclonus is small. It's hard to see, and as far as I know, no one has noticed it. I'm not sure how a video would see it. Plus, a lot of the myoclonus happens in my toes. Unless they were going to point a camera at my feet, the camera would probably not pick up on anything.
Then I looked at DFW Neurology website and saw that they were promoting the fact that they now have video EEGs. I got this paranoid (or not) idea that the clinic had invested in these new machines and they now needed to find gullible patients to agree to using them.
The main reasons I didn't want a video EEG: invasion of privacy and wasted cost.
I don't want a tech hearing our family conversations. More importantly, I tend to have a lot of gas at night. I really didn't want to struggle to hold in all my farts in fear that a tech would end up hearing it all.
Though...now that I think of it, I'm not sure if the video also included audio. If it was silent, maybe it wouldn't have been so bad.
But still...I don't think there'd be anything to see.
Anyway I played about two weeks worth of email and phone tag with DFW Neurology and eventually got the assurance that I'd not have to have a video EEG.
Then, when Victor Remmers, the EEG tech, came to our house, he had the video device with him! Remmers said we didn't have to use it. But he felt better keeping it with the rest of the equipment. He wanted us to keep it at our house. We didn't need to turn it on.
I got very suspicious and started asking Remmers if we'd still have to pay for the video bit. He said something like, No. Don't worry. The insurance will take care of it. WTF?! I don't think the insurance is going to pay for the whole thing. Besides that...as much as I hate insurance companies, I don't think it's right for them to have to pay for unnecessary (and actually unused) tests. Right?
I did a bit more questioning. In the end, Remmers decided to take the video recorder back with him. My feeling is they DID plan to charge me for the test and then realized I wasn't going to be that easily scammed. Though he did say, at one point, that if the camera wasn't turned on, I wouldn't be charged. I HOPE that's the case. I hope they weren't trying to trick me and the insurance company into paying more than needed.
(Edited to add 7/11/19: Things turned out much worse than I would have ever expected. Read here for more info about that)
Three Days with No Shower
You are not allowed to take a shower during an EEG.
I was actually at an advantage here, because I take a shower every other day rather than every day. So I figured I'd have only one day of feeling gross rather than two days.
What about people who take multiple showers a day? They'd really be suffering!
I think, though, that I might have OCD-the contamination version. I wash my hands a lot and get grossed out by vomit, feces, and stuff like that. I also have come to the point where I worry I'm going to contaminate other people with my own stuff. Like I'll wash my hands if I just touch the edge of my nostril, and sometimes the same goes for when I rub my eye.
I also do this thing where I wash my hands, dry my hands with a towel; then worry I didn't wash my hands good enough, and put the towel in the laundry. Then I wash my hands again.
So yeah. I worried something gross would happen, and I'd have a huge need for a shower.
For example, if there was human vomiting...I'd need like 10 showers before I'd feel sort of clean again.
With cat vomiting, I can deal a bit better. But I'd still prefer a shower.
Well...anyway, it turned out okay.
I never felt contaminated enough that I needed a shower. I felt only slight bits of contamination and that mental state was relieved fairly well with wipes.
I think what also helped is I avoided cleaning jobs that would make me literally dirty. I think this happens when I do things like dusting. I think a bit of the dust ends up going on me, and I start to feel the literal dirt on my skin.
I also avoided sweating by doing much less stair-climbing exercises. And I cranked up the air-conditioning to avoid night sweats.
I really didn't feel too dirty by the third day. I thought I'd be rushing to take a shower, but it wasn't like that.
What WAS hard-but I survived-is the EEG backpack. The wires on my head were attached to a backpack that I could not separate from. I had to take that backpack into the bathroom with me. This might be fine with some people, but I'm the kind of person who doesn't want to wear my jacket in the bathroom because I'm afraid it will touch the toilet seat.
When I poo, if possible, I take off my shirt because I'm afraid I'm going to end up touching my shirt between the wiping and the hand washing.
Yeah. I'm that bad.
And now suddenly I had a backpack stuck on me. I had to wear it while on the toilet.
I'm proud to say I mentally survived the experience. And maybe in the long run, it made me stronger.
It did help to have wipes available. I'd wipe the backpack down after most bathroom trips.
On top of all that, I didn't have a complete nervous breakdown over the idea that this backpack very likely had accompanied other people on their bowel movement adventures. Sometimes I'd reassure myself with the idea that DFW Neurology decontaminates the backpack and equipment after each use. But knowing what I know about the medical profession and the spread of germs, I was pretty sure my reassurances were delusional.
So then I'd go the comparison route. How many times have I checked out library books that were once held by people taking a shit? Before my maybe-OCD got this bad, I even read library books on the toilet. I read most of Cold Mountain while suffering with a gastro illness. I don't think I cleaned the book before returning it to the library.
Anyway...to be continued.