What type of medication is everyone on and...

[qtowngirl]

Carbamazepine (Tegretol) 1000mg/day, Lamotrigine (Lamictal) 300mg/day, and Topamax 50mg/day.
The Carb was chosen at diagnosis; have had three breakthroughs on it and it's been upped once but I plan to stay on it for life as I have no side effects and I feel three breakthroughs in 8.5 years is pretty good. Lamotrigine b/c I was on Topamax for 2.5 years and it stopped working so the plan was to get off that and start the Lamot.
However six weeks after being off the Topamax it's been added back to the regimen as my partials are getting worse again, and the Lamot. dosage is being messed with as well. Sigh, we are all guinea pigs.
My epileptologist is quite sure (as am I whenever I can accept it) that I am in the 90 per cent of TLE patients who's E is refractory. Hence the October booking for the seizure investigation unit and looking at surgery. Gulp.

 

[tinathesingergirl]

1500 mgs keppra 2x daily and 200 mgs topamax daily and 10mgs lisiopril which is for blood pressure because i was borderline and they put me on it as a precautionary. also i am on the nuvaring for birthcontrol since the doctors do not want me getting pregnant and my seizures only happen during my period since that seems to be my major trigger point. this combo seems to be working for me so far 4 months seizure free which is the longest in 4 years without any breakthoughs.....

Tina

 

[petero]

I find it interesting, almost everyone is on more than one medication.... I've always only been on one medication. Whether it be dilantin or tegretol.

Thank you for sharing....

I forgot to mention one other medication I'm currently on:

the Stanley Cup Playoffs
sorry about your Phoenix Coyotes (assuming your "AZ" in your name refers to Arizona) unless they make a resounding bounce down two games now, but last night looked like ridiqulous odds against them.

 

[Crash]

I am on 2000mg off Epilim per day and also 800mg off Tegratol per day.Also i get 10mg of diazapam per day as stress seems to be a signifigant trigger for me.I was on Epanutin(spelling) from my diagnosis at seventeen untill twenty six but this was not working,so taken off that replaced with Tegratol,taken off that kind off against my will and put on Epilim-total disaster.So the Tegratol was added back on with the Epilim,which does seem to be working quite well.Almost went three tears tonic free untill a couple weeks ago,but i still feel im over medicated,but its like talking to a brick wall when i bring this up with my nuero.

 

[Nakamova]

i still feel im over medicated,but its like talking to a brick wall when i bring this up with my nuero.

Well your neuro can't force you to take more medication than you want, can he? If you'd like to try a slightly smaller dose, be persistent. Let him know that you are aware of any risks, and that it would be worth it if there's a chance of feeling better on a lower dose.

I had to go through that with my neurologist -- she insisted that if I was on any less than 300mg Lamictal I would have a seizure. I stopped at 250mg instead, and then gradually went down to 150mg where I am today: Four years seizure-free, despite her dire predictions.

 

[petero]

Well your neuro can't force you to take more medication than you want, can he? If you'd like to try a slightly smaller dose, be persistent. Let him know that you are aware of any risks, and that it would be worth it if there's a chance of feeling better on a lower dose.

I had to go through that with my neurologist -- she insisted that if I was on any less than 300mg Lamictal I would have a seizure. I stopped at 250mg instead, and then gradually went down to 150mg where I am today: Four years seizure-free, despite her dire predictions.

nothing quite like the terror that only the medical community can instill when seeing them regarding seizure issues huh :/

"wait - are they TRYING to induce a stress-trigger seizure or what? self-fulfilling prophecy here or what is going on?"

 

[RachelinAZ]

I am a NBA gal myself and heavy weight boxing. I never watch either unless I'm with my dad I know nothing about hockey, although my oldest son loves it. I do not understand baseball or football LOL

I forgot to mention one other medication I'm currently on:

the Stanley Cup Playoffs
sorry about your Phoenix Coyotes (assuming your "AZ" in your name refers to Arizona) unless they make a resounding bounce down two games now, but last night looked like ridiqulous odds against them.

 

[MaryK]

Well your neuro can't force you to take more medication than you want, can he? If you'd like to try a slightly smaller dose, be persistent. Let him know that you are aware of any risks, and that it would be worth it if there's a chance of feeling better on a lower dose.

I had to go through that with my neurologist -- she insisted that if I was on any less than 300mg Lamictal I would have a seizure. I stopped at 250mg instead, and then gradually went down to 150mg where I am today: Four years seizure-free, despite her dire predictions.

My phenobarbital level was perfect, I felt good, no t/c seizures, and my neurologist said lets switch to Tegretol. I said something to the affect of no I would rather not at this time, too much stress with family, work, etc and did not want to risk a t/c. He said well 'if you start having seizures on tegretol we will immediately switch you back", yeah as if that would necessarily work..

 

[petero]

I am a NBA gal myself and heavy weight boxing. I never watch either unless I'm with my dad I know nothing about hockey, although my oldest son loves it. I do not understand baseball or football LOL

I was watching "best of Mike Tyson" on some sports channel days ago and man it's a trip watching young Mike. I could really tell when he was about to unload on some guy - he could alter his balance by his ab muscles in about 5 different directions within a half-second it seems. yowz

it's almost as though he had the strength to almost be able to tolerate having a tonic-clonic seizure

 

[petero]

My phenobarbital level was perfect, I felt good, no t/c seizures, and my neurologist said lets switch to Tegretol. I said something to the affect of no I would rather not at this time, too much stress with family, work, etc and did not want to risk a t/c. He said well 'if you start having seizures on tegretol we will immediately switch you back", yeah as if that would necessarily work..

in my case that depends, doc, on whether at that point I'd be interpreting your actions as assaultive by causing my seizures by your insistence on my switching meds causing me to lose all faith in you - but then again my seizures have been causing some psychosis episodes... at least that's what "they" told me... whoever "they" are...

:banana:
nee noo nee noo

 

[RachelinAZ]

wow, it would bother me if the doctor did not have a really good reason switching me. I only switched to tegretol b/c my gums were receeding so bad (still are) and dilantin made me tired.

in my case that depends, doc, on whether at that point I'd be interpreting your actions as assaultive by causing my seizures by your insistence on my switching meds causing me to lose all faith in you - but then again my seizures have been causing some psychosis episodes... at least that's what "they" told me... whoever "they" are...

:banana:
nee noo nee noo

 

[Andrew]

Hi all, I've never used anything else but B vitamins (mainly vitamin B6 which has always been prescribed) to control my rare type of seizures (including Status Epilepticus).

http://ghr.nlm.nih.gov/condition/pyridoxine-dependent-epilepsy

http://ghr.nlm.nih.gov/condition/pyridoxal-5-phosphate-dependent-epilepsy

http://faculty.washington.edu/sgospe/pyridoxine/index.html

http://memo.cgu.edu.tw/cgmj/3301/330101.pdf

2005 I was officially diagnosed with Dyslexia and in 2011 I was officially diagnosed with Asperger's Syndrome.

http://www.autism.org.uk/asperger

http://www.autism.org.uk/imported%20content/lazarus/approaches-therapies-and-interventions/diet-and-supplements/diet-and-vitamins-therapeutic-approaches.aspx (page 2)

http://legacy.autism.com/ari/editorials/ed_vitb6.htm

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Regards,

Andrew

 

[Cint]

My epileptologist is quite sure (as am I whenever I can accept it) that I am in the 90 per cent of TLE patients who's E is refractory.

90% of patient's with TLE is refractory? Are your you sure about that? That's an awfully huge # of patients to have refractory epilepsy.

www.epilepsy.com:

Definition of uncontrolled (refractory) seizures

Seizures sometimes fail to come under control with treatment, in which case they are called by one of many possible terms: “uncontrolled,” “intractable,” or “refractory.” How often does this happen? Studies suggest that epilepsy fails to come quickly under control with medicines in about one-third of cases, but the true frequency depends upon the definition of uncontrolled (French 2006). Most epilepsy specialists agree that refractory epilepsy is epilepsy for which seizures are frequent and severe enough, or the required therapy for them troublesome enough, to seriously interfere with quality of life. How can this concept be made specific? Does refractory mean any breakthrough seizure over the years, or a steady stream of seizures, say at least one a month? Unfortunately, there is no common standard, so any discussion of uncontrolled epilepsy has to define what is meant by uncontrolled.

Mine is refractory because I've tried 10 meds, brain surgery and now the VNS and I still have an occasional seizure.

 

[bctc]

I have petit mal seizure though I have been seizure for 41 years. Origianlly on tegretol and mysoline from the time I was a kid till I was 45. Switched to topomax/dopomax. Then had doc. switch me from topomax to keppra and now on keppra and mysoline.
Topomax - had to many of the side effects. Do not on keppra - tegretol side effects included weight gain and heart attacks and heart disease runs in my family so I was taken off of it after being on it my entire life. I started tegretol when I was 7 - so I never knew how dopey it made me. Now it's like I have a photogenic memory like the rest of my family. Who knew????? Find a neurologist and a good one. Good Luck - you just have to figure what works best for you on meds.

 

[bctc]

meant to say seizure for for 41 years

 

[RachelinAZ]

WHY are so many ppl on Keppra. I'd never heard of it, before this forum. And it seems like everyone is on it, has tried it or been offered it. I am just curious.... <3

 

[RachelinAZ]

I would have liked to have seen that show. I am still curious what would make him bite a man's ear off. Bleh! He WAS the man of the day!

Felt bad when his young daughter (here in AZ), died from cords on blinds. She strangled Made me so sad.

I've been reading he's cleaned up his act, not such a jerk... wonder if it's true. Maybe kids softened him

I was watching "best of Mike Tyson" on some sports channel days ago and man it's a trip watching young Mike. I could really tell when he was about to unload on some guy - he could alter his balance by his ab muscles in about 5 different directions within a half-second it seems. yowz

it's almost as though he had the strength to almost be able to tolerate having a tonic-clonic seizure

 

[RachelinAZ]

I need to find a neuro here in AZ. I've just just stayed on the tegretol. I do not like the weight gain nor the memory loss. I didn't know it could cause either.

I'd be happy if I could remember what happened yesterday. I do remember having a hard time spelling words yesterday. Drove me crazy. I knew it was wrong, but not how to fix it w/o spell check.

I have petit mal seizure though I have been seizure for 41 years. Origianlly on tegretol and mysoline from the time I was a kid till I was 45. Switched to topomax/dopomax. Then had doc. switch me from topomax to keppra and now on keppra and mysoline.
Topomax - had to many of the side effects. Do not on keppra - tegretol side effects included weight gain and heart attacks and heart disease runs in my family so I was taken off of it after being on it my entire life. I started tegretol when I was 7 - so I never knew how dopey it made me. Now it's like I have a photogenic memory like the rest of my family. Who knew????? Find a neurologist and a good one. Good Luck - you just have to figure what works best for you on meds.

 

[Nakamova]

WHY are so many ppl on Keppra?

One reason: With Keppra, you can get up to a working dose very quickly. (Unlike Lamictal, where the process can take many weeks). Keppra also is available as a generic (Levetiracetam), which can keep costs down.

 

[Cint]

I need to find a neuro here in AZ. I've just just stayed on the tegretol. I do not like the weight gain nor the memory loss. I didn't know it could cause either.

Some of the other meds are just as bad. Topomax, as said before, is also know as Dopamax and can make memory worse, Keppra can cause anger/rage/anxiety issues (Kepprage), Trileptal caused low sodium for me, and a lot of the drugs can make memory worse. There are side effects for all drugs.