Me again, keppra is so pointless for me.

[mrstocks]

hello,

I calmed down after 3 days, had a friend to look at the after the my dog and went to see narnia (terrible acting and 3D isn't fun). I have the full blown side effects mood slings, aggression, paranoia, dizziness, pains in my left side, trouble walking. I found that drinking helps for get calm specially over XMAS. However, i had 2 grandmal and 1 partial seizure last night i had an aura that lasted about 1 hours and had time to get a taxi home. Of course i told the taxi that i'm crazy and i probably will have a fit but, drive, i wanted to get home.

However, i had a fit some days ago (a week?) Since my body is acting terrible, when i broke my skull a year ago, the doctors told me there is a risk of having a heart head, Epilepsy and other compilations (trouble to wright / talk because of the aphasia) trouble hearing because the also broke the bone behind the ear (of course balance due to the hearing)...

After one fit, Lamical, it was terrible they only thing was good about is was i could control fits (taking the pills +1 fit seconds after) for the ECG 30mins nothing so i told then to trust me, 4x0.25mg woooooo, they got the results that wanted.

Keppra makes me feel like shit and doesn't control my fits i'm on the highest dose apparently (400€/month for nothing). What would be the mext one i'm trying, apparently after lamictal it's keppra... maybe there is a next one?

To get to the point earlier, i was on the PC watching a video, woke up on the sofa lucky i wasn't along and it lasted for what people say 5 to 7 mins (i don't have 5+min fits usually its about 30secs to 3mins and partial ones randomly, when i woke up i was i didn't know what was happing didn't know if was *alive* or what i was doing the past few days, memory lost. It wasn't a usual fit; since my right body is acting weird, i have the impression that i can't use it, for example if i tell myself to close the fingers my brain replies you can't but the fingers are closed, shaking hasn't really stopped. When i get a fit, i refuse to get the hospital that one, i asked to get transported to the emergency that time. They scanned my brain nothing (except the 3 balls of dry blood (size of 3 gold balls)).

Was it a sort of heart-attack? Everything is there to be one, i heard about TIA recently i don' really want to go to the hospital again because they would continue the frissium (great taking it, a shit to get off of it) can they go tests if subjected to TIA or it's random guesses by doctors?

PS, Last time i got a brain scan, a CAT scan of been seen even they don't for that?

 

[Bernard]

Vitamin B6 can help with the "Kepprage":

http://www.coping-with-epilepsy.com/forums/f23/kepprage-how-do-you-de-stress-5169/#post48452

But if it isn't controlling your seizure activity, maybe you need another solution entirely.

 

[stilldancing_98]

Mr. Stocks, hi I'm Teresa. I'm so sorry for your situation. It sucks. I know. I can't drive so I walk to help my kepprage. And I'm on vitamens. It really sounds like you have been thru the ringer. It can be hard but you can do it. Keppra can be really bad. It works for me. I have no other choice right now because I have been on every drug possible for my seizures. Brain surgery you name it.

 

[Katie]

Bernard, Keppra was a wonder drug for controlling my seizures but it did give me very bad anxiety. Would B6 help with that? I have tried Lamitcal, which made me worse, and am on Lyrica now that helps but not as good as Keppra. No side effects though. I am only on 75mg though and probably need to increase my dose.

 

[Bernard]

Katie - I don't know. You could always experiment and find out.

 

[mrstocks]

Well, keppra is not good but i can't not-take it. Last time i decided to remove myself from the doctor-lab-rat-test i went very very bad. So i guess keppra is working or atleast trying to work but i on the max and it's not enough.

Lamictal is lamotrigine and created many fits (2 to 10 a day). I bought some Berocca loads of B6 (but also Zinc and Vit C) i will see, another 2 pills a day (5 in the norming 5 at night) at this pace i would not have to eat during the day.

Still, my question was about heart giving up etc.

 

[Katie]

I don't think you had a heart attack. Sorry I didn't read through the post earlier as I was running out the door to work.

I think you need to stop Keppra. What's happening doesn't sound like it's helping you at all and would really concern me, especially as far as permanent damage goes.

I only have petit mals so I don't have much experience controlling grand mals, but your case sounds pretty serious.

Have you considered seeing another doctor? If I were in your shoes I would want to start back at the beginning and not end up in the situation you are now. It sounds like you are maxed out on everything and finding no comfort at all.

 

[George Earl]

KNOW HOW YOU FEEL! As a longtime user of Keppra, I can identify very closely with what you point out. I've had epilepsy in many forms for almost 40 years, and had, as I often say, "Have tried about as many wonder drugs." Nothing I've used has "cured me" of seizures, but over the years, their types have changed. I take 1500 mg of Keppra per day, plus 1000 mg of Depakote. I did begin on double that amount of Keppra (3000 mg) and it took me years to get up enough guts to tell my neurologist that I'd be willing to try going on less. So we lowered my daily intake slowly over two years. And yes, doing so did get rid of the horrible dizziness I felt night and day. And I was far less sleepy. Now that I'm on less, my headaches (the "pounding" type) have left me. I'm far less bitchy. I'm not at all dizzy. And yes, I am a fan of Keppra. However, the amount that works well for patients differs quite a bit depending on the physical and psychological makeup of the man or woman using it. Don't be hesitant to tell your neurologist that you might want to try a different amount or routine when it comes to Keppra. Rest assured that I identify very closely with what you're describing. Don't let it get you down!

 

[mrstocks]

Well was on lamictal and the Neuro was a little strange when i told him "Look, ill have one" a few seconds later i was in a grandmal in his office then i started with 500 keppra the next day, i had still about one or two a day i went to 1000 didn't change much then 1500 same there; know im on 3000 and i had two fits today (last one about 30mins ago because my dog crunched something like a rubber ball). I cant go on for 40 years being scared to go outside and maybe even i (maybe) will loose on side effect in many year.

I would not say i have tried all the drugs (as a ex-IT person) i've research for months including diets.

For know, i'm a little blocked here and i was silly enough to go see my girlfriend, who sort of left me a while back, in a country that doesn't talk the same language and i'm scared to travel back with my dog (a great dane) for 18hours it would destroy me and a great dane in the aeroplane doesn't really work out.

With a diet, Frissium and keppra the fits are very calm but a random noise or a dog too pushy it's enough to make brain dead for a couple of mins. Today was the first time i went shopping for food in weeks! Let alone find a job or learn the language

I will ask for some Oxcarbazepine next time maybe im taking my health in my own hands too much, however the doctors just make random guess too.

Still don't know why my right arm/hand is playing up.

 

[Katie]

I'm really sorry to hear about all of the trouble you're going through. It sounds like you're in a tough situation all the way around.

I just traveled across the country with one of my dogs (a German Shepherd). I might be able to help if you are thinking about flying with yours. I know Danes are huge (and beautiful!!) but it shouldn't be that big of a problem. Are you in the US right now or Vienna?

Also, I still think you should see another neurologist and get a second opinion. I don't know why a doctor would keep you on meds that are making you so miserable, without trying to help ease the side effects. If you are still having arm numbness and if you are having chest pain, tightness, or shortness of breath, I would get to the ER.

If you think you have had all of the symptoms of TIA, then I would definitely get to the ER immediately. TIA often ends up being a true stroke.

 

[mrstocks]

It's been like that for week and some days i don't think it's a life problematic there is other thing to worry about. About the dogs im in Austria at the moment but the farm (where i go to get *well*) is in the ouest of france. I prefer to take a full cabin on the train and go to Paris then i can get someone else (but a box for a great dane it's very expensive!) but still, i will try to change medication here and leave with that.

 

[Katie]

You've been having TIA symptoms for a week? I would absolutely see a doctor, if not get to the ER. I understand your concerns though.

Good luck and be safe. Keep us updated.

 

[mrstocks]

It's often a blood clot but i have 3 bleeding in my head they stopped a while ago (blooding that it) i have E because i "feel" off a cliff. When you look at the effects*

numbness
Sudden numbness or weakness of the face, arm or leg, especially on one side of the body confusion.
Well i was spend my days having aura and complaining that my arm are its strange, for the face i have it too but the right side because i broke some part of the brain that act on the nerve it's better now after re-education.

Sudden confusion, trouble speaking or understanding trouble-seeing
I have aphasia and don't talk the same language

Sudden trouble seeing in one or both eyes dizziness
Not really

Sudden trouble walking, dizziness, loss of balance or coordination
headache
I count the keppra for that!

Sudden, severe headache with no known cause
Well it's a side effect of the keppra too.

So i don't know, last time i completely conked out for over 5mins fell on the floor, forgot days maybe more in the hospital they gave me a CT scan but if they didn't as the scans from before would it so obvious? (Specially as i said that i have 3 injuries before-hand.

 

[Katie]

How long ago did you fall? These might just be symptoms of brain trauma. Intracranial bleeding is very serious but it sounds like you have that under control. Since you had such a bad injury, your symptoms make sense. You are probably having a mix of Keppra side effects and the effects of your injury.

But, I'm not a doctor, so I can't say for sure.

 

[mrstocks]

You are more a doctor than my neurologist :clap:

Thanks for your help, i think the CT Scan should show if there was more currently "available" bleeding however, i didn't see the scans myself can't be certain. I have the report but in german onder:

 

[Katie]

Thank you! I try, but I certainly don't know very much so don't give me too much credit

A CT Scan would definitely show if there was more bleeding, but I don't think they would let you leave the hospital if you were still bleeding. It would be helpful to know what the report says though. But the only German I know is dog commands... haha

 

[stilldancing_98]

Keppra controls my gtcs very well. I have been on it for over 9 years. If I miss a dose I will have a seizure.I get moody and depressed. But I will be fine.Good luck, and play some good music. It helps.