Eeg ?

[kristikay]

I had my first and only EEG in January. It was done during my hospital stay when I was diagnosed. I have only seen my Neurologist two times since then as he sees me every three months. How often should I expect to have another EEG done? When I last saw him in June I was very aware of complex partial seizures. At that time my neurogist changed my second med from Trileptal to Vimpat (Topiramate has remained constant since Jan)...I'm curious because Vimpat has changed things so much. I feel so much better. I can think clearly. I act like my old self. Therefore I thought surely these things can't be seizures, but... I think that I'm still having seizures, I just think they feel different now. Does that make any sense? This is all still so new to me I'm just not sure....So I wonder if I will get another EEG so I will know if I'm still having seizures?

[Ann T.]

Hi, kristikay:

Nice to meet you. :-) I'm glad to hear that you're feeling better since starting Vimpat. I'm also taking Vimpat. I know what you mean regarding its effects. In my case, when I feel a seizure starting, all of a sudden it just...STOPS. And, when I stand completely still, I feel myself leaning forward, then backward, like a balloon that's been poked hard. I also think more clearly, too(now that my A.M. dose has been lowered). With regard to getting another EEG, I think EEG's are mostly used in the process of diagnosis, being tested for epilepsy surgery eligibility (being able to have epilepsy surgery), or if your seizure condition takes a change for the worse, which I hope it never, ever does.

[Nakamova]

Some anti-epileptic drugs work by stopping seizures before they start, and some work by stopping them after they start (like creating a damp circle around a fire -- the fire's there, but it can't progress). So the latter process may be what' you're experiencing.

[Endless]

Hi, Kristikay,

I agree with Anne.

And i'll add that my epileptologist just had another eeg done on me to see how my brain is doing on the trileptal. I think most neuros would skip this step, but my epileptologist is extra thorough.

[kristikay]

Ann, I'm glad to talk with someone else on Vimpat It has made me feel so much better I'm scared its too good to be true. There have been some things that are strange (such as the weird feeling in my ear) but overall its great. Thanks for explaining about the EEG I just assumed I would get another to check the seizure activity.

Nakamova, your anti-epileptic drug explanation makes things so much clearer. The stopping them after they start would explain perfectly what I'm normally experiencing.

Today has been one of those days that I know without a shadow of a doubt that I'm still experiencing seizures unfortunatly ....

[Elisa]

You guys are all doing so well on Vimpat. I want to try it. Well I did try, to try it but it make me so dizzy I couldn't stand up straight. My legs feel out from under me. I think it was the Lamictal and the Vimpat together but I can't just stop the Lamictal till I get on enough Vimpat to control my seizures. ughhhh. I was hoping to switch to Vimpat so that I could get rid of Lamictal. Lamictal makes my hair fall out. Has anybody had hairloss with Vimpat?

[Endless]

Hi, Ellisa,

You may want to read these two strings:

Ahh My hair is falling out!

Types of Hair loss on AEDs

[Ann T.]

Hi, Elisa:-)

May I ask how much Vimpat you were taking? If your legs fell from underneath you, you may have been taking too much, or the Lamictal may not have mixed well with the Vimpat. I was taking 200mgs twice a day, but my legs nearly fell from underneath me in the shower, of all places! [Sorry, guys, I'm not much to look at...now, now keep the Ozahk Mountains, Tennessee foothills swearin' to a minimim...] So, I had my neurologist lower it to 150mg in the A.M. & 200mg in the P.M. I'm doing much better, now that I don't have Jell-O squares for knees.

[Loopy Lou]

I'm glad i saw this thread as i'd been pondering the same thing about eegs. I had mine about two years ago or something and was wondering if i was supposed to have another one or not.

[Meetz1064]

My neurologist is a bit, uhhhhh, more constant with the EEGs. I find it quite AGGRAVATING. However, they're portable, so I do them at home, so it's not TOO inconvenient....I guess I shouldn't whine too much.

Just in the last few years, I have had several a year--but I've also had some issues in between, so it's been more of a monitoring tool. Even though my meds are good, they did find 2 kinds of E 18 months ago...bringing my total up to 4. Yeahhhhhhhhh.

Guess I'm driving my doc and his partners batty.......and they're professors. LOL. I think it's funny, personally. Just a pain.

DO make sure that you have an EEG every so often.......if not every year, then every other year would be a good start. You need to have something to compare your meds and your brainwaves to....and if things get changed around a lot, then it would be a good thing to have one in between.

I can't say that I know the feeling of what stopping a seizure feels like.....mine are strictly nocturnal. But I do think that the description Nakamova gave is a great one to keep in mind. And if you EVER feel like you're Jello, or totally spacey because of the drugs you're on, contact your doctor about it, and see about getting blood levels done to check that you're not having issues.

Take care!

Meetz

[Elisa]

Hi Guys, thanks for your replys . Enless, my hair has been falling out for about 7 years now, and it falls out all over. I had tons of hair it just gets thinner and thinner every year. Hairloss is a well known side effect of Lamictal. The issue is Lamictal works GREAT for me.

Meetz, I was only on 1/2 a pill (50mg)with my Lamictal when it made me that dizzy! I'm going to try it again, just going to try and get rid of more of my Lamictal before I start it . I'm very sensitive to meds, and usually end up taking very small amounts to control my seizures.
I want my beautiful thick, wavy, hair back!

[Meetz1064]

Ermmmmm. Yup, I'd say you're sensitive to meds then. *scratching head*

One other thought about the hairloss though. Have you ever had your thyroid checked, and hormones as well? They're notorious for causing problems with hairloss, particularly the thyroid......

[Elisa]

oh yes, it's been 7 years had everything checked! The hair started falling out the same time the med started. They went hand and hand.
That and I can find lots and lots of peps that loss hair on Lamictal and Topamax both of which I take.

[Endless]

Does Minoxidil help?

[Crystal11]

I have complex partial seizures and take Lamictal XR 400mg and Keppra XR 3000 mg for the seizures. I take Inderal for Tachycardia and Fioricet for Migraines and two allergy meds. The Keppra XR I noticed first as far as seizure control. The "little ones" which are 45sec Complex partials seem to start quick but end within a few seconds. This was an awesome feeling for me because after a while, I didn't noticed them hardly at all meaning they were being helped by the meds. We added Lamictal XR and got rid of the Tegretol XR to see if I could get better control over my "longer ones" which are 3min+ complex partial seizures. Those seemed to be helped more by the Tegretol XR(which stopped working) and now the Lamictal XR is taking care of those.
I did something stupid several times, making it more stupid of me to do again. I reduced my meds by 1000mg of Keppra XR or I would lower my Tegretol XR by 200mg. I never did both at the same time- but after having a more intense, longer complex partial- I went to the ER. I got yelled at by Dr. H for doing this. She said "Do you know why you had a longer complex partial after three days?" She told me that it takes three days for Tegretol to get out of your system or be lowered too much in the body.
Well I learned my lesson- but every time I felt better, seizure wise, I would lower it down- just to have more problems eventually coming up.

So now that I'm off Tegretol, I just take Keppra XR and Lamictal XR which so far is reducing the few I would have a month- down to almost nothing!
I feel on edge but happy at the same time.

My neurologist told me that just because I am feeling better, doesn't mean I can lower my meds because I usually have a seizure that is stronger than normal. So I am taking it more seriously and not being such a non-compliant patient LOL.

Take care
Crystal and her guide Umbro

[peachy]

I understand what you are saying and I feel the same way. I have complex partial seizures and I take Keppra XR 3000 mg a day and 500 mg of Vimpat a day. And since I went on vimpat it seems like my seizures are different. I don't know if I can explain. I never remember any seizures and I never have auras. But NOW sometimes I have times where I just space off, but I remember them and sometimes I think I have auras?? where I feel a very strange feeling and almost smell something or feel startled or something all at the same time. I don't know what it is. But definately things are different with the vimpat. I tried to explain it to the doc and she says she thinks that I am have some jerk thing which I hardly believe. I think the vimpat changes things but not necessarily gets rid of things...does that make sense?

I am not sure on the EEG as I am going through a thousand tests as think my only solution is surgery. I have had 4 eegs.