Neuro update- EEG

[Buffheart]

Hello all! Today I had an appointment with a new neurologist at a hospital about an hour away. Originally I was going to see an epileptologist but plans had to change. I had a list of symptoms I wrote down and I gave it to him for him to browse over.

He seemed nice enough, but I'm a bit worried that he isn't going to believe me. I guess I just keep thinking about my last neurologist who told me not to waste my time by seeing him again.

He looked over part of the list and decided to schedule an EEG. He thinks it is related to migraines because they run in the family though I haven't had one for months but he said that the jerking I have, especially in my arms, isn't common with migraines and he seemed a bit concerned about when I told him that as a child I has bad reactions to strobe lights. They made me feel dizzy and confused and I felt like I was going to pass out.

He has me scheduled for an EEG next Thursday. He said it'll be about an hour long and they will use the strobe light. I'm mostly nervous that nothing will happen and he'll just tell me not to bother him anymore. I really wish I was able to see an epileptologist instead of a regular neurologist and I wish I had gone over the list with him instead of handing it over because chances are he won't read it, but overall I'm very glad that he seemed to believe me more than my previous doctors have. Guess I'll just have to wait and see and have faith that everything will work out for the best.

I do however have some questions. Will I need somebody to drive me home? What happens if I have a tonic clonic seizure there because of the lights? Will they have to keep me longer? What happens if nothing shows up? There is a very good chance I will have at least one myoclonic jerk while I am there. Probably more. But they are very mild, so what if the EEG doesn't pick it up? How sensitive are EEGs? Lastly (for now) is there anything I need to do to prepare for the test?

Also, the nurse said I had low blood pressure. 95/54 with a pulse of 92. In September my blood pressure was normal. This means one of two thing: either the nurse got the numbers wrong or I have more problems than I thought! The doctor never mentioned it, even after I told him about the "strong" heartbeat I have been feeling on and off for the past several months.

All in all it was a pretty good day

[huskymom]

Hi Buffheart!

I have had a few EEG's and I was always told to only have 5 hours of sleep before hand. I think this will increase your chances of something showing up on the test. However, most test will show nothing! Don't be discouraged. It happens more than not. I usually will have someone with me just because of the fact that I am so tired I don't trust myself. It is a good idea anyway.

Best of luck with your test and let us know how it goes!

[Nakamova]

For my EEGs they asked me to stay up all night the night before, since sleep-deprivation is a pretty common seizure trigger.As huskymom suggests, you may want to at least limit your sleeping hours, in the hopes that it will make you more vulnerable to seizure activity during the test. You may want to have someone do the driving for you if it makes you nervous (especially if you are worried about having a tonic-clonic). If you do have a t-c during the procedure, the EEG tech is there the whole time to make sure you're okay. Don't worry too much about whether the EEG will pick something up -- if it does, great! If it doesn't (as can happen if the activity originates too deep in the brain), it may mean that a diagnosis will need to be made on the basis of symptoms alone.

Are you currently on anti-seizure meds? If so, you may want to ask your neurologist if these will influence the outcome of the EEG.

Your blood pressure may be something to discuss with your regular doc. Do you have a cuff at home, or can you have it tested regularly somewhere? It's normal to have some variation. The low reading could have been just a blip. For the last few years my b.p. has been on the high-normal side, but at one doctor visit it was low like yours. Since then it's been back to the high-normal readings. There are factors that can transiently lower blood pressure, such as magnesium intake, or dehydration, so it's possible something like that was going for you. If you do have concerns, talk to your regular doc.

Hope things go well the EEG.

[Buffheart]

Thank you both

For me getting no sleep would probably be easier than getting 5 hours. I've had insomnia since about 2009 which is why it is 6:03 am and I still haven't been able to fall asleep yet. Some day I think it would be interesting to have a sleep study done as I know I am having seizures in my sleep.

If I have to have somebody with me then I will probably have to put the test off as next week everybody is busy. And I know the chances of me having a tonic clonic are unlikely because I have only had one in my whole life, but the fact that they are trying to provoke a response makes me a tad nervous. But like you said, Nakamova, there will be a tech there to help me if I do.

My biggest worry about not seeing anything on the EEG is that I have a family history of migraines and whenever I mention that to a neurologist they seem to stop listening and blame everything bad that ever happened in my life on migraines. Hearing/seeing/smelling things that aren't there? Migraines. Myoclonic jerks? Migraines. One foot bigger than the other? Migraines. If something showed up on the EEG they would have to believe that maybe there is an underlying condition causing the migraines and other symptoms, right? I really want to talk to an epileptologist because even this neurologist said some of the things I described don't fit in with migraines. Not to mention the fact that he only graduated from medical school in the past 2 years and doesn't have a lot of experience.

Currently I am on Lamictal but the neurologist said that I am not on a high enough dose to effect the test.

As for my blood pressure I bet it was just an error or a blip as it seemed kind of random for it to suddenly be so low.

[Nakamova]

What dose of Lamictal are you on?

[Buffheart]

200 mg once a day. Should I still take it the night before? I've been taking it for years and it has never changed anything related to seizures, but if you think I shouldn't take it just that once then I won't.

[Nakamova]

No, no, it's a bad idea to stop taking anti-seizure meds suddenly, unless you are in a protective setting with doctor supervision.

I was just curious because I'm on 150mg/day, and that's enough to prevent an abnormal EEG readout. If I am on too low a dose or no meds at all, then the abnormal brainwaves show up. So when your neurologist says you are not on high enough a dose to affect the test, I am somewhat skeptical. I am on a lower dose than you, and it DOES affect my EEG.

[Buffheart]

Thank you Nakamova. I will have to ask when they call next week to confirm the appointment.

[Buffheart]

The EEG was today. It was only about an hour long and I'm hoping they got enough because I was definitely twitching. What they had me do is lay there while they flashed that light, then I had to close my eyes and take deep breaths for a few minutes, then I had to sleep.

All in all the test was pretty interesting. The first interesting thing is that I used to have bad reactions to strobe lights when I was younger, but I didn't notice anything today. Maybe I've outgrown it? I know that does happen. Or maybe today my brain just tolerated it.

The second interesting thing that happened was after the deep breathing, besides the dizziness and tingling, which I was told is normal, I was really shaky, especially in my abdomen and legs. Two technicians came in several times and asked me if I was feeling alright because I was shaking so badly. I've never had that happen before and I have no idea what caused it either. I wasn't cold or scared or even nervous. After a few minutes the shaking went away on it's own and I heard the tech's whisper something about "shoulder shrugging" when I was shaking, so I think they were a little concerned as well. Is that a "normal" reaction to deep breathing? Do you think it could have been seizure related? I couldn't see the EEG, so I don't know...

The third interesting thing is that they didn't want me to fall fully asleep. As soon as I started to drift off into that twilight zone between wakefulness and sleep they called my name, told me to open my eyes, and said I was done with the test. I didn't sleep at all last night, so I was hoping to catch more than a few seconds of sleep, but I fell asleep when I got home so all is good And my hands and legs were jerking as I was laying there, so I hope the machines caught that. Anyway, what information can they garner from just a few seconds of light sleep? Why wouldn't they want me to fall fully asleep? Does anybody know?

I should get the results next week.

[Nakamova]

I don't think it's normal to have the shaking reactions that you did -- those may well be seizure-related and the deep breathing may be a trigger for a you. (One way to sometimes STOP seizures is through the [I]opposite[I/] of deep breathing: Small breaths from the diaphragm, with long exhales).

One of the most vulnerable seizure times is that "twilight" zone between waking and sleeping, rather than deep sleep itself. So it can be more relevant and helpful for EEG purposes than when you are fully asleep.

I'm glad you got to sleep when you got home. I bet that felt great.

[Buffheart]

Just curious about the deep breathing thing, but what exactly is a "normal" reaction and what isn't? Obviously the shaking wasn't normal. And what is the purpose of deep breathing? Is it supposed to trigger a seizure? How?

They also had me hooked up to an EKG to check my pulse and blood pressure. I'm not sure if they normally do that, but there were several times where I felt that strange heart beat thing where my heart is like BOOMBOOM, BOOM, BOOM, BOOM where it kind of speeds up for a beat and then beats really "loudly" (like when you are nervous and can feel your heart beating stronger) for two or three seconds then goes back to normal, so I hope that was picked up on too because I would really love to find out what causes that. I know it happened at least three times.

I'm glad you got to sleep when you got home. I bet that felt great.

Oh, it was fantastic

[Nakamova]

A normal reaction to the deep breathing would be no shaking, no symptoms whatsoever. But for people with a low seizure threshold, deep* breathing/hyperventilation can trigger a seizure (especially absence seizures) or provoke abnormal brainwaves.

Here's how: The hyperventilation reduces the carbon dioxide concentration of the blood to below its normal level (because you're exhaling more carbon dioxide than being produced in the body). This raises the blood's pH value (making it more alkaline), and constricts the blood vessels which supply the brain, thereby preventing the transport of oxygen and other molecules that help the nervous system function properly. In addition, the high pH reduces the level of available calcium. This upsets the nerve cells, makes them less stable, and affects the muscles (causing tingling, hand tremors, and twitching).

Constriction of the blood vessels also causes an increase in blood pressure. This is because smaller blood vessels make the heart work harder to move the blood along. This probably accounts for the feeling that you heart was beating harder.

*BTW it's important to note that in this case, "deep" breathing means large inhaled breaths, as opposed to breaths that originate deep from the diaphragm.

[Buffheart]

How long does it take to get the results back? The test was a week ago today and I haven't heard a peep from them. If I don't hear back from them today I think I will call them tomorrow.

[Nakamova]

The results are available immediately, it's just a matter of the neurologist making the time to actually look at them and interpret them. So yes, give a call to nudge things along.