Brand new here, very scared

[Cint]

His mom, my daughter in law, took Topamax for less than 2 weeks for severe migraine headaches and even though she has been off of it for over a year her cognitive function has not returned so she has a hard time taking care of our grandson.

I currently take 200 mgs. of Topamax along with 3000 mgs. of Keppra for my seizures. I used to get severe migraines, but my neuro prescribed a medication specifically for migraines (although I do know Topamax is used for migraines and other issues as well). Back in the 90's when Topamax first came on the market, I was taking a higher dose for seizures and it did mess with my cognitive functions, thus the name-Dopemax. But I had two children to take care of while my husband traveled, one was ADHD and had asthma. I did what I had to do, take care of my kids despite the fact I still was having seizures and suffering side-effects of high dosage of meds. My kids got thru it and so did I.

Is your D-I-L suffering from depression?

 

[MAB]

Is your D-I-L suffering from depression?[/QUOTE]

Yes, probably. I addition to the migraines she has a lot of pain from Elhers-Donlos Syndrome.

 

[Sandie]

Hi Jennergize. It really does sound like you have the onset of epilepsy but don't be scared. I was diagnosed last year and I was terrified but you will learn to deal with it and eventually it will just become part of your routine. The car can be a problem. Please don't drive. You may put yourself or others at risk of something far worse than epilepsy. It is not worth it. I have lost my power to drive but I do manage . I cannot take a bus either or public transport without a carer because my neurologist considers me a risk. It is just until the meds are under control. By the way, you have every right to be posting here and I hope you will keep us all informed on your progress. Take care

 

[hillygirl75]

I'm not sure if I should be posting here, as I do not yet have a diagnosis of epilepsy. Excuse me if I am out of line...
I have had two episodes within the last three days where I lost consciousness, convulsed for about 30 seconds, and lost bladder control. I don't remember these things- there was someone with me both of these times. One other time, I fell, lost consciousness, did not lose bladder control, and woke confused on the floor having bumped my head pretty good. No one was with me, so I don't know if I convulsed or not.
I am 32, a single mother of two children, and do not have health insurance for me at this time. I am afraid to go to a clinic, because I fear having my license taken away- I have to drive for work.... I have to work to get some insurance...I need insurance to get this checked....it's a catch-22.

What I'd like to know from you, is- what is onset of epilepsy like? Can I just suddenly have this, at age 32? Do these convulsion incidents/loss of bladder/not remembering sound like what you deal with?
From what I have read about epilepsy, it sounds just like it...
What have you done about healthcare without insurance? What have you done about driving? Work? Kids?
This just seems impossible to me right now....

It is very scary indeed...just had one of my longest lasting general mals a few days ago and my kids almost freaked out! Lasted more than 4 minutes..of course bit my tongue woke up confused went bavk to sleep with a splitting headache and body aches. The next day I see bruises on both the inside of my calves. I didn't fall I was in a recliner chair. I wonder can it be from the muscles spasms is it possible?? Its upsetting not to have control of your own body. I was foaming at the mouth really bad I was told. Just hate my daughters seeing me like that :'( all because I took a nap for an hour. I hope no one ever has to go through this or anything worse ever.
Sorry to hear your situation but all I can say having dealt with epilepsy for more than 20 years is that you have to be strong. Be positive and questioning why me won't help anyone. Yes its depressing but knowing you're not alone and there are plenty out there suffering feeling our pain helps in a way.
Wishing you all the best and stay in touch..hope to hear good news from you. Btw I'm also new here but I have read so many of the threads and I'm always researching on what's new with epilepsy healing hopefully curing one day for all f us here...

 

[Jennergize]

UPDATE:

I mentioned previously that I was having trouble getting care because I have no insurance. Today I got the most amazing break! At my follow up appointment with a new clinic today, the Dr. was able to call an MRI practice that occasionally does emergency MRI donations. I was able to get the MRI for free-- and they got me in the same day! I have no results just yet, but I am hopeful to get some answers on Monday.
I am now a little over a week on Dilantin, with no new incidents. I am still struggling with the Dilantin.... dealing with anxiety, nausea and some odd hypersensitivity after I take it.
Hoping that it will lessen over time.
I've been floating around here on the forum, reading more and more, and finding comfort in you all and your stories. : )

Jen

 

[mejohn1]

That's excellent news about the MRI, hope it shows something! That's one of the most frustrating parts of epilepsy; the initial diagnosis. Many of us have been diagnosed with no concrete proof of anything. You know you're having them, but not knowing why is very tough to deal with (for me at least). Many have never had a postive EEG, MRI or anything, and then there are some who have had major brain surgery. Ask lots and lots of questions, then ask some more. I read a study recently that had HUGE proof that sites like this are more beneficial for the patient then any doctor because we live it every day. We get it. The frustrations, the fear and anxiety, the not knowing if today will be the day you have another, it will get easier to live with. Hang in... Oh, and ask for samples!!

 

[chmmr]

That is great about the MRI i hope you get the results fast. I agree with mejohn1 though that the hardest thing is ironically when things come back normal even though you are having seizures. So frustrating!