hi new here from texas...

[tipsynoodle]

Hi...starting a few months ago, i would get this weird taste in my mouth if i drank or ate anything and then a rush would come over my head like im going to pass out , but then it stops..I even asked my fam. doctor about it but he said it was a panic attack lol ....well, on wednesday the same thing happened, i was telling my husband that the taste was "back" and then then he said i just slid down on the ground thightend up and clenched hands inward and i was biting hard on my tongue hmmm this time i ended up having a seizure......the first seizure in my life...I am 46 ..my husband was franic (so he told me) and the ambulance came and got me...i even ended up in icu the first night ...they did MRI and EEG tests on me but all came back ok.....the neurologist came to see me and he talked about a gran mal seizure induced by meds......most of the time i was still tooo groggy to remember everything
I am in the middle of preparations to have weight loss surgery (vsg) on the 26th of july and a blood test last month had found that i had H pylori virus (virus of the stomach lining) and they put me on helidach therapy- 4 pills (2 pebto and 2 antibiotic) 4 times a day and it was found out that these pills contained flagyl ? that caused my seizure........no more flagyl for me lol.....(what is flagyl ??)
anyways this is some scary stuff........i am on topiramate but that keeps me too drugged up (50mg)....im still dizzy most of the time.....will i now always have seizures? will i now always have to take pills? this is all very new to me, heck i don't know what i should be asking....thanks for reading.. i have not taken the pill today.....have a hard time gathering my thoughts....Do the doctors report that u are not to drive for 6 months? something about state law in texas, no driving for 6 months........geez.

 

[Endless]

Hi, tipsynoodle,

Welcome to the forum!

I am so sorry to hear about your seizures. And topamax can be rough for some people. Around here it has the nickname of "dopamax" I had a really hard time on it. I'm on lamictal now. Some folks in here say that over time the side effects get better.

oh - Flagyl is an antibiotic.

Anyway, welcome, and feel free to browse around. I'm glad you found us.

 

[Nakamova]

Hi tipsynoodle, welcome to CWE!

Some of your questions are best-answered by the neurologist. Does he think your seizures were a one-time event caused by the Flagyl? If so, then there's a good chance that you will not need to be medicated long-term, and will not need to take meds forever. It can be hard to predict if that's definitely the case. Often after a grand mal seizure, the patient will opt to play it safe and stay medicated for 6 months or so to make sure they don't have a recurring a seizure (and to potentially allow for regaining driving privileges).

But the meds do come with side effects -- as you can tell. You say that you haven't taken the Topomax pill today: It is very important that you don't stop taking the Topomax cold turkey! Stopping anti-seizure meds suddenly can actually cause seizures! Do let your neurologist know ASAP about the discomfort you are having on the Topomax and ask about slowly tapering off of it. You should also make sure there won't be issues with the weight loss surgery and seizure or seizure-medication issues -- anything that affects metabolism can be problematic.

You should call the Texas DMV to get info about any driving restrictions. The rules are different in every state about physician obligation to tell the DMV if you've had a seizure, and how long you need to be seizure-free before resuming driving. From the TX DMV web-site, it looks like there's a DMV Medical Advisory Board that makes decisions on a case-by-case by basis but it's hard to tell for sure. The neurologist who treated you should also be familiar with the driving restrictions.

Write down a list of questions for the neurologist and try to get them answered ASAP -- it's important to figure out the medication issues before major surgery.

Best,
Nakamova

 

[lovemyladybug]

welcome to CWE ! i just found this site a few months ago after having E for 10 years and couldnt believe how much i didnt know , still figuring things out ! so i wont give you much in the way of advice other than agree DONT just stop tking your meds , like Naka already said that can actually cause you to have seizures & be realllly dangerous ! ( i know that from literature & experience ) best of luck , hopefully this was a one time thing for you

 

[lovemyladybug]

that was suppose to say Nakamova ( not sure what happened ) sorry

 

[tipsynoodle]

hey thanks all

thanks for all your responses.....
ok just to clarify some things now that i am more lucid at the moment lol
the whole time i was in the hospital i was not on any meds other than the iv which was just saline........as i left , i got a prescription for topomax ( pharma gave me the generic one) and the first night home i took one......once i realized how it makes me feel i stopped taking it.....I am aware that u should not stop taking meds but i figured i only took one to begin with...my body aint used to it yet? ....im hoping it will have no repercussions.......
The neurologist did think that the flagyl brought out the seizure but that they were in the making already for a while since i had the weird taste in the mouth months ago......Im just hoping things will go back to normal from here on out....I don't like feeling this way like im not all there and not all faculties are working...still a bit tired and shaky on my feet....
going to see my regular pcm tomorrow to get my blood checked again to see if the virus is still present and take action from there....and to update my file and input the no flagyl .
hmmm..... wonder if sudden weight gain can bring on seizures? I had to (chose to) put on 20 pounds in 2 weeks to qualify for the surgery...my bmi was only 39 needed to be 40 and that all took place 2-3 weeks ago? guess im just trying to come up with an answer that i will prolly never get.....

ok now something else......say i have another seizure? then what? after its over i just lay in the bed until i feel better and then get on with life? is that the norm? or do i need to go back to doctor or call ambulance again? i mean what is life like with seizures? I only had one ( thank god ) sofar so i have no expirience or know how......i guess seizures are a part of life for a lot of people and i would venture to guess that some people take them in stride.....
im hoping to learn as much as i can while i can ....thanks.

 

[Nakamova]

In general, if you know you have a seizure disorder, and you have a grand mal seizure, you don't necessarily need to go to the ER or call an ambulance if you have not injured yourself in the process. If there's any doubt, then call the ambulance. In my case, I've had quite a few grand mals (also called tonic clonics), but the only times I've gone to the ER were when I was in public and someone called the ambulance, and one other time when it was an especially bad seizure and I wasn't sure if I had hit my head too hard.

However, if you do have another seizure that's a sign that you need to be medicated/treated, for a variety of reasons. There's the risk that you might injure yourself or someone else while having one. And there's also the strong risk that untreated seizures progress in terms of frequency and kind as the brain gets in the habit of seizing.

One other thing -- you mentioned the "weird taste" and other warning signs that you may have had a low seizure threshold. It may be related to the h. pylori bacteria -- there seems to be a link between that and epilepsy. Not everyone with that bacteria has epilepsy of course, but a statistically significant number of people with epilepsy have that bacteria. The theory is that malabsorption problems in the gut can lead to imbalances in brain chemistry. If you can repair your gut, that may help. You may want to ask your doctors about getting a nutritional work-up to check for absorption issues and/or imbalances.

 

[tipsynoodle]

thanks i will look into that