Hello, O. Stocks from France/Austria.

[mrstocks]

Hello,

About a year ago i fell off a mountain/ruin/wall (in order of apparition) and had some concussion with three bleedings on the left side size about 3.5cm and the other ones on the right side pretty small I broke my skull all; this summer i was walking and i felt some thing pretty weird on like cramps on the face, i went outside thinking that it would be over soon, Start of epilepsy.
I must say, i was waiting for it or a seizure and my brain is repairing it's self (i was 26 last year).

After the accident i was in Vienna (austria) and had dose of aphasia took me about 2 months to say shutup to the people who thought it would be nice to talk for me.

Anyway, I tried the lamotrigine got up to highest dose but still had fits then Keppra 4G a day (2g in the morning and 2g at night) its the highest dosage they can offer me i think, since i had less fits but still.

However, the side effect of the Keppra (it's a high dosage?) makes my feel like shit, headaches, unbalance, suicidal, aggression, lose of weight and to crown it all, i often have fits in the street i think its because i get scared of what-will-happen-if-i-have-one-now the seizure that i have all tonic-clonic and most of the time i know 20secs before hand and people ring the ambulance or even worst; try to put finger in my mouth onder:

I have learned my experience with the fits when i see it coming lie down, cat the cats/dog away-down remove quickly many "weapons" whatever breath in deeply as i can breath and tell myself "BRB is 2 mins".

I should make another thread i guess but fell free to move it someone, i rang my neuro doctor and told him about it, i got as a reply "It's very common" such answer leave me fell he doesn't know he is talking about.

Starting three days ago im reducing the medicine by half every 2 days. 4G/2/1/.5/0

Just a hello sign from me Hope to read about everyone's experiences hopefully better first-hand exp than a doctor to reads a 1970 epilepsy for dummies.

Oliver

 

[Nakamova]

Hey mrstocks, welcome to CWE!

Are you tapering off the med under doctor supervision? It's a good idea to let your neurologist know, just in case something happens during the tapering process. Either way, I strongly recommend that you taper on a slower schedule. When going up or down on an AED, the brain is quite vulnerable as it tries to adjust to each change in its electrochemical soup. If you can go slowly, it's easier on your brain, and you will lessen the risk of seizures from the tapering process. (I've been tapering down my Lamotrigine dose slightly. I went down 25 mg and stayed at that level for 4 months before going down another 25 mg).

The mood-related side effects from Keppra are notorious. Many folks have found that taking a B6 supplement helps -- you might want to ask your doctor about this. It does sound pretty like it's been pretty hellish. It's no fun being on the med "merry-go-round", but there are other AEDs to try. Perhaps you can find a new neurologist and talk about the options. And consider alternatives such as diet or neurofeedback.

Here's a good place to start at CWE: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[mrstocks]

Great document and thanks for your welcoming message.

Im reducing the pills very fast, i know and i expect to have some fits however, taking the pills can save me some but also as i have fits even with maybe the treatment isn't worth the money as it 60pills of 0.5g is 80€ about it's about 200€/month (well im not good in maths) i never stopping taking them maybe, like the Lamotrigine it's the cause of the fits, i was having at max 3 fits a day with it mostly 20secs after taking it, one in the morning and lunch time. The doctor doesn't know about it either has he refused it once and send to ergo-therapy for 1 week :clap: (catching balls and stuff...) i will keep the a diary of my feelings on the 2nd i have a meeting with the doctor in france and at last i can take get back my own body or if it worst i can also build up the dosage again, i'm a try/error/restart type of person.

Maybe felling good its more helpful than taking human/animal pills, it all in the mind anyhow.

Ive set myself on holiday until the 1decembre, staying home, not going outside other than walking my dogs (great danes) and Sunday i will take the last pill.

The document talks about diets, i known of the existence and will try one to complete the home-made-treatment as I fell the pills are more dangerous than stopping smocking or other hard drugs.

Again, thx!

 

[Cint]

Hi and Welcome Oliver,

I was in Vienna back in 2007 and loved Austria. So beautiful.

Sorry to hear of your head injury and now the seizures. I currently take Keppra 3000 mgs. a day, 1500 in the a.m., 1500 in the p.m. I agree with Nakamova and would taper off the medication under the supervision of a neurologist. Granted, the side-effects of keppra for some are a nightmare, but so can tapering off the drug too quick and seizures. I've been on 10 AED's and I've had mood problems with nearly all of them, so Keppra isn't a problem for me. Hope you find something that works well for your seizures.

 

[Endless]

Hi, Oliver,

Welcome to the forum!

I agree with Cint and Nakamova. If you are tapering off your meds, do so very slowly. Ideally you will have help and advice from your doctor. If you taper off too quickly you could cause a serious seizure that could be life-threatening.

I've struggled with the meds, too. I used to wonder if they were worth it because the side effects were so terrible. I'm happily on Lamictal now, though. The particular set of side effects on this drug, for me, were better than having seizures every day.

Am I reading right that the Keppra didn't control your seizures either? Don't lose heart - there are lots of AEDs, they will each work differently for you, and not all of them are as expensive as the Keppra or Lamictal. Everyone reacts to each drug differently.

Have you talked with your neurologist about the side effects, and the lack of seizure control? Do you have a neurologist in France?

 

[mrstocks]

Hiya.

I think the most useful drugs are in the mind not pills, if i think i can do it and i would be-off without keppra then i probably will (even if it's not true, i will trick myself into it).

I had 3 neurologists who where studying my case for 6months, the injuries i cause myself where pretty unusual and turned all the brain turned around in a few months (left handed to right handed, developing the right lobe for talking...) but the specialist is in France he was considered the best and but i'm starting to doubt, i have a meeting with him in France on the 2nd (ECG, CAT Scan and random logical tests) and on the 7th December. Last time i arrived at 9am and waited until 5:30pm and im not prepared to do that again especial as they removed my license so spending so much time with the granny is enough to make it brain damaged.

I will keep you inform, i know i should go slow but we only have one life.

 

[RobinN]

Welcome mrstocks -
My daughter began having seizures (no known reason other than hormonal changes) she was 14. The medication was awful for her.
She now is 7 months seizure free, by being extremely careful with nutritional choices.
We also chose neurofeedback as one of her original therapies (after eliminating drugs), which I believe began her healing to raise her seizure threshold.

My daughter had more issues and the quality of her life plummeted while on medication. My intuition told me a lifetime of drugs was not the answer for her. However, it is very difficult to get the conventional medical community to support the alterntives.

 

[mrstocks]

Thanks for the feedback, it's truly welcome and i loved reading it! i asked for some neurotherapy but they will send me to ergotherapy :O, it's two weeks long and i have some great danes to look after. I will have a go with a diet, what's your advice to start with?
Last time i pasted a EEG and the result where normal so i was sent home... The fit are due to my brain changing continuously (personal opinion there) maybe it will repair itself it's another-unknown world up there imho.
My parents force me to go do every therapy, try ever drug and it the maximum studies as possible as the "doctor knows best" gets very tedious at times telling them as should listen to my experience and not a doctor who sees me for 10mins.

As a side note, i known that epilepsy wasn't going away so fast i use to take 0.25x2 Lamotrigine and try to get used to it (with some people to help me out if i had a probleme). Insane.

 

[huskymom]

Welcome Oliver!

I hope that you feel at home here. Everyone is very helpful. :hello:

 

[mrstocks]

Woaaah

that didnt work :/ going to hospital. I'm going to hospital over 5 mins of fit

 

[Nakamova]

I'm so so sorry mrstocks! I hope you feel better soon, and don't have to spend too long in the hospital.

 

[mrstocks]

Unf****king believable teach me right taking my own life my own hands :/

I don't think its was a tonic clonic seizure, the doctors also don't know. I was front of the pc looking at some video on youtube, next i thing i know, i was on the sofa waking up. My father luckily he was here at the time knows that i refuse people to touch me (with the common seizure) and he held my dog from licking my face and turned on the TV.

When i woke up i asked him WHAT HAPPED he told me that i had a seizure but i after i woke up i put myself on the couch. I have no idea that i did that, then i asked myself what did i do all day, i have no memory at all.

In the hospital, i had a CT and MRA scan that shows my old injuries but i don't have any more. Apparently i was laughing and pushed my self back from the chair because the muscle going crazy and knock me out (or the seizure knocked me out) and it lasted 5 and a 1/2. Bloody long time and no aura no warning totally mind-blowing to say the lest.

I did that because i didn't want to take anymore pills now they added a second one Frisium.

((

 

[Nakamova]

Are you photosensitive? Sometimes monitors or certain videos can provoke a seizure.

 

[mrstocks]

i don't think so as i work in IT... don't know what happen but want to change body :/