Epilepsy medication-double vision, dizziness

Why and Dotte

Songster
9 Years
Mar 8, 2010
240
0
109
Little Rock,Arkansas
I was diagnosed with epilepsy when I was 13 yrs old, just a few months ago I've been told I was ok to drive, I'm 18 and I finally I have a learners permit. The side effects for the medications that I'm on are- too many, but two are dizziness and blurred / double vision, I've been having double/blurry vision and dizziness every now and then, it's a strange feeling, like a fog sometimes too.I've told my nerologist and she says it's a side effect and leave it at that.
I'm on keppra, topamax and tegretol, just curious if anyone else had epilepsy or used these medications and had the same problems.
I'm going to get kicked off my parents insurance soon and I'm going to have to figure something out, this medicine costs a heck of a lot of money.
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I'm not ready for this.
 

FlashPointFarm

Songster
10 Years
11 Years
Jan 24, 2009
1,891
18
198
Iowa
I was taking Topamax for a while for migraines. My hands and feet were numb all the time and I would lose my balance a lot. I stopped taking it, it really wasn't helping me anyway. Wish you the best...
 

babylady4

Mother Goose
12 Years
Mar 30, 2009
5,150
1,022
426
Central WI
Why are you on 3 anticonvulsants???? My DD has Epilepsy as well (since 8) and has only been on two meds. The first was Trileptal which caused her to have more seizures. Her Doc switched her to Keppra and she has been seizure free ever since. She has reported no observable side effects on the meds.

I think I would either discuss with your Doc why you are on so many meds and if they can whittle you down some. Either that or find another Neuro ( I know that is hard since my DD's left the state and we are trying to find another 'good' one).

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Why and Dotte

Songster
9 Years
Mar 8, 2010
240
0
109
Little Rock,Arkansas
Thank you for replying
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I'm on tegretol for gran mal seizures, keppra because I'm near the max dosage of tegretol and topamax for seizures where I'm just a little out of it, they've all worked except for the side effects, they aren't regular just every now and then sometimes months apart sometimes days.
I was offered a job and everything would have worked out a ride and all, but I know the dizziness would be an issue they wouldn't let me take a nap until it goes away
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I have an appt. in october, if I'm still having issues. Hopefully she'd listen.
 

babylady4

Mother Goose
12 Years
Mar 30, 2009
5,150
1,022
426
Central WI
My DD has the grand mal (Tonic clonic) seizures as well as partial seizures. The Keppra works for both. I still see no reason for you to be on such massive doses.....

Ask your doc if they want to pay for them.......

If you are close to the University of Virginia, I woudl send you there to my DD's Neuro. He is now working at the Hospital there teaching new peds Neuros....
 

Sonoran Silkies

Flock Mistress
11 Years
Jan 4, 2009
20,149
438
421
Tempe, Arizona
Quote:
October is a very long time to wait. You need to talk to your doctor about making your life manageable. I don't have epilepsy, so I cannot speak to your specific meds, but I know that with my asthma meds there are some side effects that are simply too hard to live with--you need to find a balance that will keep you as close to seizure free as possible while still allowing you to function in normal life. You may be able to lower the doses, or as was suggested cut out one or more of the meds. If the current meds are a new treatment variation, it is possible that the side effects will diminish as your body becomes accustoimed. I do recommend that you read ALL the medicine package inserts, including the information intended for medical providers. This will list the expected side effects, how prevalent they are and whether lower doses have fewer side effect while still providing effective treatment. You also need to be candid with your doctor about the costs of the medicines--it doesn't help to have a prescription that you cannot afford to purchase.

As for your insurance, if you enroll full-time in school, most insurance will continue until you are at least 21, possibly older. It is also possible that with your diagnosis you may be able to remain on your parents' insurance due to disability (not completely sure on this, but I do know that with some diagnoses adult children retain coverage).
 

gckiddhouse

Songster
11 Years
Dec 9, 2008
1,019
8
161
Desert Hills, AZ
We don't deal with grand mal seizures, but my son and husband have absence epilepsy.

I am an information geek, of sorts, and I hate hearing about how "we don't know what causes epilepsy". I believe there is a cause, and therefore a cure (or at least a way to treat the cause).

I further believe that medication does just one thing - stops the seizures. Doctors won't claim anything more than that because they know it is true.

If there is a cause (and you already know I believe there is one), then the meds are doing nothing to address whatever the problem is. They are simply a band-aid covering the SYMPTOMS of a deeper problem that, untreated, continues to get worse.

We are attempting to "treat" our son's seizures without the help of meds. We are finding answers!

I don't recommend you stop your medication. I am only suggesting that you consider "treating" your epilepsy. What if you could get off the meds eventually? Or take minimal instead of maximum amounts of them?

Please go to www.dogtorj.com and read everything he says about epilepsy. His book will be out soon. His web site is just a blog, really. One man's journey through the studies that are already out there. All he did was put the puzzle pieces together. I challenge you to research what he says in the literature and you will find that he is really smart. He is not a world class neurologist. But he has answers that the world class neurologists don't have. He is on to something. We will see what the future holds for him and his findings.

In addition to the diet he recommends (which is NOT the ketogenic diet), we had our son's amino acid levels checked and are treating his imbalances there. We are on a 90 day trial and I will be happy to report back at the end of May to tell you if he is still having seizures.

You can think I am crazy if you like. I don't mind. But if it intrigues you just a little and you seek the answers you need, then it was worth you thinking I am crazy.
 

coloradochick

Songster
12 Years
Dec 19, 2007
2,503
15
213
Brighton, CO
My 10 year old son Colton has been have Grand Mal's, Petit Mals, and every other kind of seizure you can think of since he was 9 months old. We've been through every med out there with no control what so ever. At one time he was on 5 different meds. We've been through 8 years of testing, been to Dallas, Detroit, a Vegas Nerve Stimulator, and a Corpus Callosotomy (sp) only to be told there is nothing more they can do for him. Sooo, we live with this every minute of every day. I've slept with Colt since he was 2 because of night seizures when his head gets buried in the pillow, blankets, mattress, etc. It's a horrible thing to watch your child go through. Some days are ok and some he may have several throughout. He also has what we call "Stomach seizures" He says his tummy hurts, sometimes he vomits or not, sometimes he has a seizure or not, and sometime when he does have one it could be a Grand Mal or it could just be a "Staring seizure. He's in a special needs school that he gets bussed to every morning. He thrives there. He can't write, doesn't know his colors, numbers. If you point to things he knows what they are and will tell you. The thing he most lives for is to go in "the Big Truck" with my DH. Or ride on the tractor with whomever will take him on it. He is currently on Topomax, Keppra (both of these for about 6 years now, and he is on Abilify for Autism. The only thing I can contribute to these seizures is when eh was born he weighed 10 lbs 4oz and I couldn't get him out. He was stuck in the canal for a time until the nurse got on the table, strattled me and pushed down while the doctor pulled him out. Completely tore me apart and he ws born a beat up, broken, purple little boy. It's been a very long road and if I could take them from him so he could be a normal little boy I'd do it in a heartbeat.

I wish he could tell us what side effects he's having but he can't. He does say his feet are owie or his head hurts. Maybe it's the same pain you feel in your feet that he is feeling. Doctors are no help. We are on our 5th doctor at Children's Hospital and they have all asked me the same question "What Med do you think is working the most or least?" HUH!?!?!?! I just look at them and say how the heck am I supposed to know when he's on several!!! I pray for anyone that has to deal with the evil things and that they are able to help you.

C

eta How do they check amino levels?
 
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Why and Dotte

Songster
9 Years
Mar 8, 2010
240
0
109
Little Rock,Arkansas
coloradochick, your post had me in tears, I go through so little compared to what your son goes through my prayers are with him and you,
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Like you said the doctors don't care they just want their money, they want to cover the problem not help, if there is a doctor that really cares about the patient, they're full.
I can stay on my parents insurance if I go to college, if my vision issues don't stop by the cut off date I'll probably sign up for online classes, I found out I can stay on until I'm 24 I think.
 

equine chick

Crowing
13 Years
Feb 9, 2007
1,815
517
356
Volant Pa Lawrence County
Colorado chick My heart is with you, colt is blessed to have you as his mother. I have an autistic child too and to top it off with epilepsy I really feel for you. ?You and your family are amazing with the care you give that precious lil boy. IF you ever need to just vent feel free to pm me. I have found venting really helps when you share with someone in your shoes. I wish they could find some sort of answers for you.
Original poster-I am also a nurse so here is my take. Have your mom take you to see an opthmologist. This is not just an eye doctor but one that does eye surgeries. Have the eyes checked to rule out any abnormalities going on. If everything is good, then have your mom confront your neurologist She needs to tell her " that this not okay for you to have double vision. If she says there is nothing she can do say "you will seek out a second opinion" and make sure you go to a larger hospital with a neuroligical center where they can be very objective not some buddy of your doctors. Even if this is the meds maybe they can give you a med that might help to counteract or change you to another epilepsy med.
 

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