Can a neurologist answer these questions?

[girlwithadog]

I have an appointment with my neurologist on Monday. I have a feeling he wont be too happy with me. After all the posts and trying to convince myself to take the medication I just couldn't. I have all these questions that weren't answered at my last appointment since I saw the nurse practitioner. And with my wedding and honeymoon right around the corner (it just passed, got married on 4/20) and school and everything else, adding a medication just seemed like too much when I didn't know what to expect from the medication or anything of the sort. So I took it very easy and everything worked out great. I know I need the medication and I will take it, I just need some answers right now.

But I don't know how this works or what answers to expect. Like some people know what kind of epilepsy they have or where it originates or something like that, would I be able to find this out from my neurologist?

He's not an epitologist (small town, we only have 3 neuros here no epitologist and no med school anywhere within an hour of me and y'all know how difficult it is to get around without a license) but would he be able to tell me the differences in seizures and let me know if some of the other symptoms are seizure related? I asked the nurse practitioner and all she said was "it could be" and left it at that. I'd like a better explination.

I'd also like to know what to expect from the medication, if it will make me feel funny, if there is a possibility of it making things worse in the beginning, if for some reason, the EEG had a false positive what would happen if I took the meds and would it do the reverse effect and cause seizures? I also want to know what the EEG picked up because I didn't have anything like an aura during but I did have a visual distortion during it, but that happens all the time with me. Would he be able to help me understand what the EEG said and why I was given the diagnosis more than "there was activity" would he be able to tell what kind of activity or when it happened or anything like that? Does the EEG show where the activity was in the brain?

I only have a short period of time with him and have so many questions, I want to know what I can expect to have answered and make the most of the appointment. My husband will be in there with me so he can remember what the neuro says. I'm trying to be prepared so I can really get on the road with fixing the issue.

 

[LW6279]

I don't think your wrong for not wanting to take the meds. Wedding and school are important things you don't want anything to go wrong. Just talk to Dr. Make them take the time and explain things. If they won't do that then time for another. I know how you feel. Just make sure to write everything down. I don't take meds and refuse to but that is me. I don't want to say you don't need them because you do. You don't want to have more seizures and I think maybe look into NFB in your area and see if it helps. Good luck with the appt.

 

[huskymom]

congratulations on your marriage! it will be almost impossible for someone to tell you want to expect with any medication. Most of them will effect people in different ways. What might be a problem for some, won't even bother others. You can expect whatever you may feel to last for about two weeks while your body system adjusts. If you are still having issues after that period of time, then you may want to try something else. Also as stated above, if you don't feel comfortable with this Dr., then look into another one. That is what I ended up doing and I really like my new one.

 

[KarenB]

This is what I do when we take our son to the neurologist (or to other specialists) -- on one page, with headings, type out all my questions, any seizures or other odd events since last visit, and what we're doing with meds. Keep it brief and concise -- but I assure you, the doctor will appreciate this. You can give him a copy, and have one for yourself to make sure all the points are covered. It would look something like this:

Medication prescribed: XXXX
Dosage taken & any side effects: have not yet initiated (wedding & honeymoon; also prescribed by nurse practitioner and wish to discuss test results and potential medicine side effects with neurologist before initiating).

Events since last visit
1) List any seizures, what type, what time of day, etc. (I often have a separate chart on a 2nd piece of paper with this info (doc will scan this in to his computer)
2) List other events such as your "visual distortions" (these might actually be a type of partial seizure) -- what exactly happens, and how often you're having them, what time of day, etc.

Questions to discuss

1) Possibility of a false positive result from EEG?
2) What, precisely, did the EEG pick up? Where in the brain (i.e. temporal lobe, frontal lobe, etc.) were abnormal spikes or waves noted?
3) Why did the EEG show abnormality when I didn't have any seizures or auras? Could my visual distortions possibly be some type of seizure?
4) Does this EEG give some sort of diagnosis -- such as what type of seizures I'm having and where?
5) What kind of side effects can I expect from this medication? Are there any extreme side effects that are considered a medical emergency?
6) Does this medication require any special testing from time to time (such as liver enzymes or bicarbonate levels)?
7) What do I need to know about this medication with regard to my daily life (for instance, can I drink alcohol? Do I need to drink extra water? Will it interact with any other medications I'm already taking. Will it affect my cognitive ability, memory as I am a student?)
8) Is there any chance this medication will make my seizures worse? What should I do if I have a bad reaction to this med?

***********************
I'm not a neurologist, but I do have a few answers simply from experience:
1) It's more likely to have a false negative from an EEG than a false positive. In fact, I've never heard of a false positive, whereas false negatives are very common.
2) If the EEG showed abnormalities when you were having visual distortions, that's most likely because they were a type of seizure (unless, maybe....migraines? Not sure if those show up on EEG)
3) Occasionally, some meds will make seizures worse, or new types of seizures will appear. This happened to our son when he was on Trileptal, and again when he was on Keppra.

Do you mind telling us which med was prescribed for you? There's a whole lot of folks here who can tell you what their experience was with whatever med it is. Not that you'd have the same effect. But there's certain side effects that are fairly universal with certain meds (for instance, most people lose their appetite with Zonegran, many people have emotional upsets when taking Keppra, many people experience cognitive dulling with Depakote, etc.)

I also recommend that you go online and look up side effects for the med you were prescribed, and include any specific questions related to that in your list of questions for the doc

 

[girlwithadog]

Thank you all for your responses. I really appreciate them.

As far as listing my symptoms and episodes I really don't know what to list. I don't know what would be seizure related and what would be related to anything else. I spent the last nearly 15 years in psych offices because they were convinced I had mental disorders that caused the visual distortions and blackouts and now all of a sudden they are seizure related and not psych related. So I don't know what else would be seizure related or psych related. Like a couple mornings ago out of the blue I had a panic attack. I've always had panic attacks but I also get them before a seizure during the aura phase. A couple days ago with the panic attack I started getting blind spots while I was on the computer in the morning. This typically happens with seizures until it all goes black but it never went black that morning. So I don't know if it was just a panic attack or not. And I have low blood pressure so I get those blind spots pretty frequently so it's hard to tell when to note it and when not to. When I had my grand mal a couple years back I had the blind spots when I stood up from using the restroom (it often happens when I stand up) and the next thing I know I'm coming out of a grand mal. But that doesn't always happen either. Sometimes the blind spots end up being nothing. I also get the spaced out feelings a lot and get times where I can't understand people, can't put their words together or can't figure out how to respond to them. It hasn't happened lately but it happened a few times a day almost every day up until a couple months ago. There's just this long list and I don't know what could be seizure related and what is not.

As far as the medication goes, I was given Keppra. 500mg 2x a day. Another concern with starting the medication now is my new form of birth control. My husband and I are using natural family planning method so we aren't using actual birth control. Turns out I wasn't given completely accurate info on natural family planning (was not told about the fluid check) but found out two weeks to late. We waited until we were married to become active (it was a new decision we made a few months ago) but the wedding night was very close to the time I could have gotten pregnant so now I'm concerned as I was supposed to start today but haven't. Sometimes I'm 1-2 days late so we will see but with our family planning method we need to make sure we are on the right med should we get pregnant.

Thank you all for the congratulations. The wedding was wonderful and the honeymoon was great. I even got in the water and did some snorkeling, and didn't panic about having a seizure in the water! Ever since my grand mal I've been too afraid to go in the water even if someone was there with me, but on the honeymoon I did and didn't think twice about it and we had a wonderful time!

I do have a question though, what other tests might they give you after an EEG? And what does an EEG show if anyone knows? Would it show where you were getting the seizures from and what kind of activity came up on an EEG or does it simply show "activity"?

 

[Nakamova]

I do have a question though, what other tests might they give you after an EEG? And what does an EEG show if anyone knows? Would it show where you were getting the seizures from and what kind of activity came up on an EEG or does it simply show "activity"?

Other tests:
MRI: This is used to check for structural/vascular issues (like lesions or swellings) that may be contributing to the seizures. Most of us have normal MRIs.
Sometimes blood tests are done to look for deficiencies or imbalances that might be playing a role. Cardiac tests may be done if the symptoms (rapid heart rate, fainting, etc.) overlap with ones associated with heart issues.
There are other kinds of tests aimed at finding if there is a very specific seizure focus, but they are only done when someone with epilepsy is a candidate for surgery (i.e. has uncontrolled seizures that don't respond to meds).

What does an EEG show? Does it simply show "activity"?
You would definitely want the EEG to show activity -- otherwise you would be brain dead! What the neurologist is looking for are "epileptiform" patterns. These are spike and wave patterns that occur during or between seizures that are characteristic of epilepsy. In many cases, the kinds of brainwaves and patterns can point to very specific forms of epilepsy. In other cases they may be more ambiguous. The EEG can show if the brainwaves are focal (originating in a specific area of the brain) or generalized (appearing throughout the brain), and this aspect can help with diagnosis as well.

The EEG usually includes a section with flashing strobe lights. This is done because, in some folks, this can help bring on seizure activity. The EEG also usually includes a section where you are asked to hyperventilate. This is done because hyperventilation can often induce absence seizures if someone is prone to them, so it can be a helpful way to diagnose that particular kind of seizures.

The EEG is meant to supplement or confirm any clinical evidence (your actual symptoms) that indicates a seizure disorder. Sometimes the EEG results are definitive, sometimes they are suggestive, sometimes they are inconclusive, sometimes they are negative. The interpretation of the results is up to the neurologist.

 

[Cint]

As far as listing my symptoms and episodes I really don't know what to list

.
Start by listing the following as a symptom. IMO this definitely does sound like a complex partial seizure.

I also get the spaced out feelings a lot and get times where I can't understand people, can't put their words together or can't figure out how to respond to them. It hasn't happened lately but it happened a few times a day almost every day up until a couple months ago. There's just this long list and I don't know what could be seizure related and what is not.

I do have a question though, what other tests might they give you after an EEG? And what does an EEG show if anyone knows? Would it show where you were getting the seizures from and what kind of activity came up on an EEG or does it simply show "activity"?

The EEG shows patterns of normal or abnormal brain electrical activity. Some abnormal patterns may occur with a number of different conditions, not just seizures. For example, certain types of waves may be seen after head trauma, stroke, brain tumor, or seizures. A common example of this type is called "slowing," in which the rhythm of the brain waves is slower than would be expected for the patient's age and level of alertness.
http://www.epilepsy.com/epilepsy/testing_eeg

After an EEG, the dr. may want to do a CT (computerized tomography) or an MRI for more info.

 

[KarenB]

If there's a chance you're pregnant, I'd start taking a folic acid supplement immediately, to help ward off neural tube defects (that might develop in first trimester). In fact, taking folic acid is good for anyone with seizure disorder, since some meds deplete the body's supply of folic acid..

This is an article about Keppra and pregnancy and also neural tube defects:
http://professionals.epilepsy.com/medications/p_keppra_pregnancy.html

Seeing spots before your eyes, or having things go dark when standing up is a symptom of low blood pressure. I have had that, and the worse that happpened to me was that I fainted (but I don't have epilepsy). However, in your case it sounds like maybe low blood pressure triggered a seizure. Also, if you were seeing spots before your eyes or partial darkness when you were sitting (or lying down while having EEG) -- that sounds more ominous to me, and something I'd definitely list as a symptom (and mention that it has preceded a grand mal in past).

Agree with Cint about the spaced out feelings and not understanding people's words as being an important symptom.

Also, your panic attacks, especially if they have preceded a seizure before. Some people can have psychological symptoms independent of seizures, but with many people, they go hand in hand. Some types of epilepsy (such as temporal lobe) tend to also cause psychotic type of symptoms (this is the case with my son -- although certain meds tend to make it worse).