I'm scared, probably for no reason...what the heck is up with MY brain?-- SMALL Update Post #9

[Sierra]

Tell me what other uses, besides checking for seizures, that sleep deprived EEGs have?

In October, I wrote this on another board:

I am concerned specifically about my brain. I am concerned about memory loss (both short and long term), difficulty with speech, frequent "episodes" in which I think one thing and say another or in which I can't think clearly (for example, today I 100% thought we were in August even though I spent the morning leading an autumn worship service), strange emotional episodes, loss of common sense, and episodes of vertigo.

Now I am getting kinda scared. I went to a neurologist. She noted that my throat is very small, and she suggested that sleep apnea might be a big part of what is going on. I thought that was terrific! That is a common, simple problem with a good solution...oxygen at night. Okay, I can deal with that.

So I went and had a sleep study. I was all prepared to go in for my follow-up and get some oxygen. I was so excited to have a potential cause and solution.

Well, my sleep study results have gone back to the neurologist, and I just got a call today that I need to have a sleep deprived EEG. Apparently, sleep apnea was ruled out by the study. However, other concerns arose during the sleep study.

My ds has had sleep deprived EEGs to rule out seizures. I don't know what else they are used for. (Anyone??)

I want answers, and I want them now! I don't want to have to wait to figure out what the heck is going on. I can tell my brain is really not right, and it is making me cry because I am getting so scared.

They scheduled my sleep deprived EEG for Thursday, but I leave for New Orleans on Thursday. I might have to wait until I come back.

It was the nurse who called me today. She couldn't give me any info. I asked to speak to the neurologist, but she wasn't in today. What I really want to know is what the exact concerns were from the sleep study, and what they hope to rule out with the EEG.

I wouldn't be so scared if this hadn't gotten really bad over this last year. But I can feel something is not right. Help!

[thebarkingbird]

can you go in tomorrow? just show up and say i'd like to speak with the doctor? ask, specifically what the test is for?

also, i think they have to show you your medical records if you request them you can go in and ask to see a copy in the office. the first (or last) page should have what the ref feral was meant to dx.

[julie anne]

Sierra, . I know when you don't know the outcome of something & people aren't forthcoming, that can add to the tension/anxiety. I would second the pp's suggestion of going into the doctor's office (maybe call anonymously to find out if the doc is in today, before you go). Also, maybe there's a way to postpone your trip or send someone in your replacement to New Orleans instead of the other way around & delaying your EEG. Lastly, maybe a call into the sleep lab to inquire what a sleep-deprived EEG assesses could give you a window into what they may be trying to test you for. Keep us posted. We care. Big hugs to you.

[sbgrace]

I don't know that this is the best option but I would in the least have them copy your sleep study report for you. That's if they won't allow you to speak with the doctor yourself. Can they bump up the study so you can still do your trip maybe?

[Sierra]

Thanks everyone.

This is hard. I called the neurology office this morning, again, and their phone lines were down so I got the answering service. No call back yet.

The office is quite a drive from me, so I don't think I'll go in unless I absolutely have to. I might, however, ask them to fax me my sleep study results if I don't hear back by tomorrow afternoon.

I also called the office where the EEG is going to be done. They said I needed to talk to my neurologist about what the EEG would be testing. Urgh. I switched my appointment for the Tuesday after I get back (the 26th). It is hard to wait but this has been going on long enough that I don't see what waiting a week and a half will hurt. I can't postpone this trip, and it would be a REALLY big deal to get someone to go in my place. I'm one of a few leaders on a Katrina-recovery trip, and I am taking a group of about 40 adults and teens with me. It would be a lot of stress to turn this over to someone else, and I'm not sure I could juggle that.

[MindfulBirth]

So sorry the neuro is not getting back to you. Honestly, I've never heard of an EEG being used for anything other than measuring brainwaves...ie, seizures. The good news is that there are some new meds out there that can help you with fewer side effects than the older ones. I was on phenobarb as a kid and was totally drugged up. I'm now on Lamictal and can function normally. Epilepsy is not a fun diagnosis, and there may be some things you will need to reasses in your life to ensure your safety and that of your family. I hope that the testing gives you the answers that you need.

[mamaverdi]

Tell them you are going out of town and if they have concerns that you are having seizure activity, YOU NEED TO KNOW NOW before you take this big trip.

[Sierra]

Originally Posted by MindfulBirth

Epilepsy is not a fun diagnosis, and there may be some things you will need to reasses in your life to ensure your safety and that of your family.

Thank you. I really appreciate your post. One of the hard things about this is that I already have a chronic illness that complicates our lives quite a bit, and brings up special safety considerations. I get so scared thinking of something else on top of that, especially because I don't want to be disqualified from future adoptions due to having two major chronic illnesses.

mamaverdi, that's a really good idea. Thank you.

[Sierra]

Small Update:

I wasn't able to speak with the doc but was able to speak more with the nurse today. Because she could answer only limited questions, I asked her to just read me the neurologist's notes on my sleep study.

She corrected the first nurse I spoke to. She said the test indicated that I actually do have mild sleep apnea, and even though this likely isn't my main problem, I could benefit from oxygen at night. That's good to know, and I am eager to get started with it.

She did verify that I had abnormal brain wave activity during the night, and she confirmed that seizures were a primary concern. She said this is why the EEG has been ordered, but she still framed it in terms of ruling seizures out, rather than confirming a prospective diagnosis, so perhaps there is another reason the sleep study could have shown abnormal brain activity. She did not seem too alarmed about me switching my appointment to when I get back into town, so that is good.

One frustrating thing is that when I called early this afternoon, the administrator said the doc had turned in the chart with a note that she called me this morning. Now, my cell phone is out of batteries and I can't find my charger, so that may be the issue. However, I did let the nurse know that the doc hadn't gotten in touch with me, I gave her my work number, and she said she would have the doc give me a ring. But I did not receive a call, at least not at work.

Now, so far I REALLY like this neurologist. She is an amazing doc. I do not want to have to consider switching at this time. She's too good. But this issue of having to wait around for communication on such a worrisome matter is very frustrating. Ugh.

Just wanted to keep you all posted.

[mamaverdi]

Yes, there are abnormal brain patterns that are normal.

[Sierra]

Okay, so what does that mean?

I have my EEG in the morning. I am doing the whole sleep deprivation thing as we speak. I am getting really, really nervous. I am realizing I want the EEG to give me some answers-- to lead to a diagnosis-- because other than the mild sleep apnea, I have no answers right now. And things are scary. So that's it. I just want answers. Even if it means we know something is wrong.

Oh what I would do right now for a treatable condition.

The next step after this is my follow-up with the neurologist. I have an appointment with her later this week (I made it as my follow-up back before the sleep study), but I am not sure she'll have the EEG results by then. I can't recall from my ds' testing...how long does this usually take?

[MindfulBirth]

Best wishes on your EEG today. Sending you ~~~peace~~~ vibes. I hope that the EEG gives you answers one way or the other.

PS. sorry about your dog. I just saw that on your siggy.

[RedOakMomma]

Depending on how the techs mark the EEG, and what they're looking for, it can take just a couple of hours or a couple of days. It really depends on how long it takes for the Neuro to sit down and look it over, and how well the tech marks questionable spots (some EEGs have a tech in the room marking spots, some don't).

[Sierra]

Okay, so the test this morning took about an hour and a half or two hours. The tech was very experienced. He has done this for about 30 years. He was very nice too, and showed me sample testing and everything.

He said my neurologist is actually responsible for reading all the hospital EEG's this week. Hooray! He said she'd probably read it this afternoon or tomorrow morning. He said after it has been read, it usually takes a few days to get a report. However, since I have an appointment this week, hopefully she'll be able to clue me in.

I was a little disappointed because the tech said my test looked "good" to him. Of course, the neurologist has to interpret it still. When I tried to feel him out further he just said, "I didn't see any big spikes or anything that made me want to call your neurologist right this minute."

I found I was exhausted afterward and tried to go to work but had to go home to sleep instead. I slept for four hours straight! I have been having anxiety on and off since awaking. I am also experiencing episodes of dizziness, related or not. I found that the induced hypervenilation during the test nearly gave me a panic attack. That was very hard. Anyway, I think now I am just nervous about the results...combined with other life anxieties (my dog, work stuff, etc.).

Thanks, by the way, Mindfulbirth, for your sympathies regarding my dog. He was six years old. His leash somehow unclipped from his harness and he went running. 45 minutes to one hour later he was hit by a car. He died shortly thereafter. I found him after he was dead, when I saw the police car at the next major street. It has been very hard.

[mamaverdi]

Sierra, I am so so so so sorry about the loss of your dog. How horrific.

Regarding "abnormal waves that are normal"...it means, that there are certain kinds of waves that are abnormal, but so many people have them of a given age group that they are consider possibly normal. Usually they will do follow up tests and consider them in light of other data. Not sure if that makes more sense or not.