120 days down, 60 left of walking

[Justin May]

Hey, I'm new here and have been really glad I found this place to share stories and try to understand more what's got ahold of me. Thanks for having me.

June 14 I had my first and last seizures. Three in one day. I was extremely exhausted from work and play, I think exhaustion had a huge impact on this. Maybe more than the Keppra?

Saw a neurologist a few months ago. He's got me on 2K mg of Keppra alone per day. He did an EEG on me, looked it at and said he wouldn't like to see me for 6 six months. I assume it's good news. I really think Im baffling him, and he doesn't want to admit it or stop seeing me or my insurance check.

Here in Texas, it takes 6 months without a seizure to get back to driving again. Living alone and having no DL as a 28 year old man has been horrible, don't wish it on my worst enemy. No public transport is available for me so I've been walking or meekly accepting rides when offered. Huge change in lifestyle, hating it. Really glad I work from home or I'd be ruined.

What concerns me is that I have two choices right now. Either continue on my Keppra for life at a cost of $500 a year or try to ramp the drugs down and risk another seizure and 6 months of no driving. Neither seems acceptable to me. Any suggestions for me?

Also, how do I upload a photo album?

I feel a lot better, very cathartic. Thanks for reading.

[Meetz1064]

well that's a toss up that only you can decide. I can only tell you that my meds cost a lot more. So, if that makes you feel somewhat better......

For the photo albums, go to QuickLinks in the upper right corner, click on Pictures & Albums and follow the directions.......

Glad things are going well for you, though.

Take care,

Meetz

[RobinN]

Hi Justin - Welcome
Sorry to hear about your seizures. Have you only had the three? All in one day?

My daughter is med free. They did not sit well in her system. I believe exhaustion and nutrition were at the root of her first seizures.... oh and hormones. The first neurologist we saw said "not so". Took me a while to find out otherwise. By that time we were already on the med merry-go-round.

Two years later, she is still not seizure free. We are working on the last one a month. She actually has made it this last month without having one, but we are still in a sensitive time for her, so I am not cheering just yet. We have made nutritional changes, and also have been doing neurofeedback, which helped in many ways. So as you see there are alternatives to meds. You just need to be committed to them. I wouldn't suggest that you come off of meds until you have something else in place. And know that with any major mind drug, you will have some effects when you go up or down.

As for the photos.... you have to be a member for a bit longer before you can upload or link anything. We have had some troublemakers here in the past, and we have kept the peace by putting a guard rails up for a while. I hope you understand.

[Justin May]

Thanks Meetz! Appreciate the welcome. Hope your doing well today.

Its really not the money of it, but more the manner in which the drugs were thrust upon me. Who really knows if its the Keppra keeping me from seizures? It might be my stellar personality or my upgraded nutritional choices and sleep schedule. But, seriously, I think I'll have to learn it the hard way.

I see the quick links on the right, when I try to add an album it busts me for not having the proper permissions.

[RobinN]

One thing to consider Justin.. When Rebecca went for testing at UCLA, they told me that anyone is susceptible to one seizure. I said... but she had two in one day. They said they looked upon that as one seizure.

They were wrong about other things, but that info has stuck with me.

[jgbmartin]

Welcome from a fellow Texan! This place is THE place to come for information!
I am 48 Female, started having seizures in January...but I thought I was having some sort of sleep disorders. When I describe to doc, he suggested I was having seizures...I thought he was off his rocker. He sent me to neurolgist that told me same thing...I kept trying to convince him that he was not right. Then they did the EEG and it showed seizure activity...he put me on Keppra 500 mg 2 times a day for first month and had me come back, talk to me about how I was feeling, did blood work. He had me come back again, upped my dose to 750 mg based on blood work and did another blood test....and then had me come back again in 30 days. Then he told me to come back in 6 months. But...I have had a few seizures in the meantime, so I now have to go back next month.
I think the Keppra is working because before the meds, I would have up to several a day...but at the same time, I would not have them daily. So is it really working, I don't know. My doc did advise me not to drive, but said in TX that dr cannot report you to DPS. I explained if I was not able to drive, I would lose my job and also my insurance. I do drive and have not had a seizure in the car since I have been on the Keppra. I do get aura that warn me that they are coming too. I do worry about driving and only drive to work and church.
As far as the album, I know I tried it when I first came on and it would not allow me to do that...but now that I have been here a few months, it has allowed me to upload my pics.

[brain]

Justin:

I am curious, having 3 seizures in one day, and
I am wondering did the Neurologist ever perform
an EEG? Did the Neurologist ever perform any
tests on you at all.

It's a fact, a known fact, that nearly everyone
would experience a seizure at least once in their
lifetime (but it does not mean that they have Epilepsy).

Is it possible that you might have been ill, or had been
drinking alcohol, or ate something (ie: food poisoning,
MSG, etc) that may have triggered it. Aspartamane:
is a KNOWN seizure trigger and is found in Diet Drinks
and in independent packagings (and it can cause severe
health problems to people as well - and not just Epilepsy).

There's a lot of avenues as why you had 3 in one day
and never having it again. I would strongly recommend
for you to see another Neurologist or better yet, an
Epileptologist for a 2nd opinion and go on from there.
(An Epileptologist is a Neurologist that are experts in
Epilepsy & Seizure Disorders)

It is possible that your one time episode was just that,
but I am NOT a MEDICAL DOCTOR - but these are just
my concerns and questions, and I hope these would be
of great benefit for you.

Additional information would be of benefit if anyone in
your family have Epilepsy? Did you ever sustain head trauma
or head injuries? But nonetheless - I'm a strong advocate
of second opinions and recommend it, after all, you're
entitled to it!

[Justin May]

Robin, thanks for your story. I've still got quite a bit of reading up on this forum. Thank goodness for y'all!

Three all in one day, yes. They had me on Dialitin in the hospital, that stuff was horrible on me. The Keppra has its ups and downs as I've seen but I'm not a walking zombie like I was before with the Keppra and/or dialitin.

My doc even went as far to say that "you don't have epilepsy, yet." but here's 6 months rx of keppra so you can see. Crazy and backwards, to me.

That makes loads of sense about the linking and photos. Good to know.

Hi Justin - Welcome
Sorry to hear about your seizures. Have you only had the three? All in one day?

My daughter is med free. They did not sit well in her system. I believe exhaustion and nutrition were at the root of her first seizures.... oh and hormones. The first neurologist we saw said "not so". Took me a while to find out otherwise. By that time we were already on the med merry-go-round.

Two years later, she is still not seizure free. We are working on the last one a month. She actually has made it this last month without having one, but we are still in a sensitive time for her, so I am not cheering just yet. We have made nutritional changes, and also have been doing neurofeedback, which helped in many ways. So as you see there are alternatives to meds. You just need to be committed to them. I wouldn't suggest that you come off of meds until you have something else in place. And know that with any major mind drug, you will have some effects when you go up or down.

As for the photos.... you have to be a member for a bit longer before you can upload or link anything. We have had some troublemakers here in the past, and we have kept the peace by putting a guard rails up for a while. I hope you understand.

[Justin May]

I have a family & personal history of strokes when I was a child. I think I'm the 1st one of my family that's had seizures. Head trauma, check plus. Texas HS football.

I had loads of tests, CAT scan, EEG, EKG, MRI, MRA, the whole gamut. My memory is shot, so I don't even recall the docs ever giving me the results of any tests...

I was drinking beer moderately this summer, so that may have had a place in it. I know I drink way too many sodas, but have tried to cut down.

I'll visit another neurologist for a 2nd opinion or try to get in with a specialist, thanks for the advice!

[Justin May]

Thanks, JG! I though y'all had a few more Texans than the average board!
It's interesting to know that a doc can't bust me to the DPS. I thought my doc was just blowing me off when he said something about that.

Welcome from a fellow Texan! This place is THE place to come for information!
I am 48 Female, started having seizures in January...but I thought I was having some sort of sleep disorders. When I describe to doc, he suggested I was having seizures...I thought he was off his rocker. He sent me to neurolgist that told me same thing...I kept trying to convince him that he was not right. Then they did the EEG and it showed seizure activity...he put me on Keppra 500 mg 2 times a day for first month and had me come back, talk to me about how I was feeling, did blood work. He had me come back again, upped my dose to 750 mg based on blood work and did another blood test....and then had me come back again in 30 days. Then he told me to come back in 6 months. But...I have had a few seizures in the meantime, so I now have to go back next month.
I think the Keppra is working because before the meds, I would have up to several a day...but at the same time, I would not have them daily. So is it really working, I don't know. My doc did advise me not to drive, but said in TX that dr cannot report you to DPS. I explained if I was not able to drive, I would lose my job and also my insurance. I do drive and have not had a seizure in the car since I have been on the Keppra. I do get aura that warn me that they are coming too. I do worry about driving and only drive to work and church.
As far as the album, I know I tried it when I first came on and it would not allow me to do that...but now that I have been here a few months, it has allowed me to upload my pics.

[tinasmom]

Welcome Justin -

Here is the definition of Epilepsy taken from the National Epilepsy Foundation website: When a person has two or more seizures, they are considered to have epilepsy.

I would be asking the doctor if the EEG showed anything abnormal. Getting a second opinion is always a good idea also.

[jgbmartin]

Justin,
In some states, like CA, it is the law that dr have to report you to DPS...but Tx still is under the law that provides medical confidentiality. The reason behind that is if a patient knows they will be reported, they will not be truthful with their doctor and therefore could jeopardize their treatment.
I think you would be wise to get a second opionion...seizures meds are serious meds and the fact that your dr was too quick to give 6 months supply of them to you and not want some serious followup is a red flag. I had also heard that if you have multiple seizures in one day and not any afterwards...it is considered to be one seizure and one seizure does not make epilesy.
This is a great place for information...I like my neuroligist but there is a lot to learn about seizures and this has been my greatest resource.
Best of luck
J

[Bernard]

Howdy neighbor, welcome to the forum.

... What concerns me is that I have two choices right now. Either continue on my Keppra for life at a cost of $500 a year or try to ramp the drugs down and risk another seizure and 6 months of no driving. Neither seems acceptable to me. Any suggestions for me?

http://www.coping-with-epilepsy.com/...ford+meds.html

Also, how do I upload a photo album?

At the top of the page, in the menu bar (red links), click on Quick Links. Then select Pictures and Albums from the drop down menu. Create/add an album and then you can add/upload pictures to it.