Got my EEG results-

[CathyAnn31]

The nurse just called. Turns out that even though I never experienced any seizure activity during the 48 hrs of my ambulatory EEG, it did still pick up on some abnormalities that they said were consistant with my history of epilepsy, whatever that means. While awake it noticed abnormalities in all regions of the brain, and when sleeping just the left temporal lobe. My Dr wants me to continue taking Lamictal XR and I have my next appt with him in a few weeks to discuss how the meds are working.

Anyone have any questions I should ask my Dr?

I am relieved something showed on my EEG. Now I have a some answers as my 2 MRIs and my bloodwork came back normal.

Looks like I get to stick around this place. What a great forum for support. Thank you everyone.

[TempusFugit]

It definitely is good news in one respect, but of course - it's also a double edged sword. At least now you have some hard evidence.

*hugs*

[CathyAnn31]

It definitely is good news in one respect, but of course - it's also a double edged sword. At least now you have some hard evidence.

So true.

Thanks 4 the hugs.

[Meetz1064]

to you, CathyAnn. While I never wish the diagnosis of E on anyone, at least you have your answer. And, you could have stuck around anyway, even if you didn't have it, we would have been happy to have you! You could have been an advocate for us, or something...but still, you know what I mean.

I would ask your neurologist what he would like to do. What does he think about diets like the GARD, LGIT, Modified Atkins---in order to help you gain some control. If he doesn't know about them, encourage him to learn about them, what you know and maybe point him this way. You can send him to the www.dogtorj.com site for more information on the GARD to start out with.

If your neurologist is strictly pop a pill and go away person, decide if that's what you're willing to do or not. If not, go doctor shopping.......a pain in the neck, but it can be worth it. Keep a journal in the meantime, show him/her that you KNOW what's going on with your body. It will help both of you determine what your triggers are, and go from there.

Take care.

Meetz

[dfwtexas]

Well, it is hard to accept seizure diagnosis, but am glad you got some solid results. Guess you are stuck with us

[Nakamova]

Welcome to the club officially... I agree with Meetz, find out where your neurologist stands on complementary/alternative therapies, not just diet, but also neurofeedback. It doesn't have to be a dealbreaker if he's not open to them or up to speed, but it sure would be a plus. You might also find out how long he recommends that you stay on the meds. (Some docs say "forever", and others are open to controlled tapering in two to five years if it seems appropriate). And find out how easy it is to contact him with any questions that might come up between appointments (like about side effects or symptoms).

Best,
Nakamova

[moonchild1970]

Glad to hear that you got answer. Sorry that it is E. But at least you are in great company here. Everyone here is so nice and understanding and friendly.

One Q though. How did you get the ambulatory EEG? If you request one will they do it?

[CathyAnn31]

Glad to hear that you got answer. Sorry that it is E. But at least you are in great company here. Everyone here is so nice and understanding and friendly.

One Q though. How did you get the ambulatory EEG? If you request one will they do it?

I assume its just routine for my Dr. I tell ya, they got me in within 2 weeks, did an MRI right after my appt, and my EEG was 2 days later. Things moved so fast my head was spinning. Most drs (in general) I've known seemed to kind of drag their feet.


And I hope my comment about sticking around didn't offend anyone. It wasn't intended to be taken seriously... just saying you'll have a hard time getting rid of me.

Another thing... the nurse mentioned something about focal potential somewhere, the rest was medical mumbo-jumbo that I didn't write down. Anyone know what focal potential means?

Thanks everyone!!

[moonchild1970]

Yeah after getting the run around for years. Things have been progressing quickly for me too. Once I described the symptoms, showed them my bit up tongue and had hubby tell what he saw the DR's paid attention.

Just afraid the DR's will give up again when they see "normal" EEG and CT results.

As for your comment, no worries.

[CathyAnn31]

Moonchild- with your seizures happening so frequently, I'd almost demand a longer EEG, atleast 48 hrs like mine was.

My seizures have been 4 months apart...with a few odd spells in between that no one witnessed, so who knows. But what I am getting at, I wasn't expecting any results from my EEG and yet it did pick up on the abnormal activity. Good luck. ***hugs***

[Crystal11]

When I had my 72hr ambulatory EEG, I wasn't expecting anything, seizure wise to show up. I have had 1-20 Complex partials in a day, some as short as 30-40sec, but wasn't really expecting a lot. I was in a "good spot" where I had no seizures but it only lasted a few days to a week. So when I had mine, I did everything I could to be careful of the leads, make sure everything was turned on correctly etc and also kept my normal average school-day routine. I kept a dairy for my neurologist and gave the test back. I thought I would hear "everything is normal" like most my EEGs would be. But this time was different. It showed spikes and waves and also was consistant with Epilepsy. I've had seizures since age 6 but unless you had seizures during the testing, it won't find a lot. It did show some activity all over when the photosensative measurments were taken. I had no idea of this at all. I had troubles with slow moving patterns and dull light, if that makes any sence. So the machine picked up on that. I had a drop attack while the ambulatory EEG was running and I was so thrilled (as odd as that sounds) becuase I was able to grab the marker button and mark it down after I realised it happened. I am sort of aware during those but it happens so fast and you have absolutley no control of yourself. Quite scary.
I will be seeing a new neurologist in November, finally- after waiting for over a year. I hope to get another EEG now that I've been on meds etc.
It does feel good to have some results and I think that having 72hrs of continuous recording, sleeping and wake time helps too.

I'm glad your test was helpful.
Take care,
Crystal

[Rick Rodgers]

Hi Cathy Ann 31,
My name is Rick, I am new here but i would like to make an quick addition. I hope you will take into account my experience as to your results.
I have Complex partial E, of the Grand Mal type. Just switched from Lamotrigine back to Lamictal upon my request. Control is not as solid, and if anyone would know it would be me.
I have had 2 EEG's, one in Jan '08, and the other just last month. They both came out NORMAL. The technician tried to tell me that I went to sleep.(It WAS one of the sleep-deprived variety, but I have alot of experience not sleeping...) I am not going to argue with the professional, but I listened to her playing her favorite tunes all during the session. I was a long distance runner, and the Hyperventilation surely didn't knock me for a loop. I am sure the reason for the 'reaction' that got me into the lab was from the Generics. I have also requested Brand name Tegretol, same with the 'grip' on reality.
So many of your symptoms are just like mine, it's scary. It will be interesting to see what happens for you. Sometimes you have to tell your doctor "Let's get to the bottom of this..." The EEG will show them where in the brain the problem is, and the seizure symptoms will tell them which type of medications should focus on that specific point. I am aware that all persons react differently, and I hope you are successful in finding the answer.
Thank you for your time. Rick

[Bernard]

focal point / focal potential means that they found a specific area where the epileptiform activity originates. This can be important for diagnosing specific types of epilepsy and *could* also indicate that you are a potential candidate for brain surgery.

[CathyAnn31]

Brain surgery? That would scare the crap out of me!!!

Again, thanks everyone.

[Rick Rodgers]

Thanks Bernard----You are administration?? I hope this is the correct way to address a situation like this. This is the first community I have ever participated in. I see all the things that I want to learn more about, and will probably try to apply them right away. I would like to say thank you for pointing out some facts that I had not paid close enough attention to. I would do well to delve a little deeper.

CathtyAnn31,

Don't be scared. Here's a perspective. On a link in this site, I observed the fact that the alternate treatment that yielded the best results was Biofeedback. Surgery is somewhat further down the list. I am in NO WAY a knowledgeable person to make statements about the subject of 'Neurofeedback', but I have read a few books in which it is discussed. [Ilo E. Leppik, Sally Fletcher] I am very interested in it and would do it in a second if I had a chance. I think that with success rates like that, a person would OWE IT TO HIMSELF/HERSELF to give it a chance before any 'surgical' treatment be considered. (Of course I am speaking for myself. )

I don't want anybody getting the wrong idea, I am also as inexperienced with surgical procedures and their success rates. Personally, I would avoid it if possiible.

I hope I have not made any inappropriate statements. I just want to give some hope to someone who might be able to use it.

Best Wishes-----RICK

[RobinN]

CathyAnn - one study I want to point out to you.
There were some children with ADHD, they also have gluten sensitivity. They were given EEGs. They had abnormal results when given gluten.

Many reasons for abnormal test results.

ADHD Caused by Digestive Disorder

[Bernard]

Thanks Bernard----You are administration??

Hi Rick, yes, I'm the admin for the site, but truth be told, the moderating team handles most problems before I get to them. They are awesome.

... On a link in this site, I observed the fact that the alternate treatment that yielded the best results was Biofeedback. Surgery is somewhat further down the list.

The ratings in the chart (see link in my signature) reflect my opinion. It's intended to be a guide and highlight some of the considerations one can use to evaluate different options. You might put more weight/emphasis on things than I did and score them differently.

... I am in NO WAY a knowledgeable person to make statements about the subject of 'Neurofeedback', but I have read a few books in which it is discussed. [Ilo E. Leppik, Sally Fletcher] I am very interested in it and would do it in a second if I had a chance. I think that with success rates like that, a person would OWE IT TO HIMSELF/HERSELF to give it a chance before any 'surgical' treatment be considered. (Of course I am speaking for myself. )

I agree 100% with that.

[moonchild1970]

Welcome Rick. I agree with you.

Cathy Anne- I am so disapointed, my regular DR says EEG results are normal so I have to wait to see neurologist. Meanwhile he has put me on Elavil. It helped in past for those "seizures" they said were Fibromyalgia.

I just am so afraid I am going to get stuck with another DR who gives up on me.

[skillefer]

Hmmm...ok..here's my suggestion for questions to ask your neurologist...

1. Are there any medicines that might interact with the meds you have me on?
2. Are there any foods I should avoid that might effect how the medicine is absorbed?
3. Is it safe to get pregnant while on this medicine? ( If you are considering or may someday consider getting pregnant...)
4. Does this med effect any nutrient absoprtions? (What kind of vitamin should I take?)
5. Please explain exactly what kind of seizures I have in laymen's terms.
6. Are there any complimentary treatments that I should be considering?
7. Is there any chance that these seizures might change over time or get worse?



Keep a journal so that you can show your neurologist exactly what your average day is like...
1. what you eat/drink (what, when, how much)
2. sleep (how much, and whether it's interrupted or not)
3. strange sensations... (any odd sounds/smells/tastes/feelings/visions/emotional feelings that you have, migraines, etc...and when and how long they last)
4. your cycle (some seizures can be triggered by hormone shifts)
5. stress ( any stress your under and how you deal with it)
6. meds (any OTC or prescrip that your taking, why, and how much...decongestants can trigger seizures too....)

I'm sure I'm forgetting something..the thing is, the more your neurologist knows, the better he can help you. Be honest. And make sure you take your journal with you. Jot down any questions you might have, as well as the answers. you'd be amazed how much you can forget. And if possible, have a loved one go with you. It's great support, and helps them be a better support to you.

[stilldancing_98]

Mine were focal before my surgery then went generalized after. And I think it's good to be a good listener when you talk to your doctor. They tend to show their better bed side manner that way. Not always. But I think it helps. And a good pharmacist is the one to ask about meds.They know more if you are going to the same one and they know your history.Anyway I'm just talking now. Sorry. Good luck on this.Teresa