New AED's

[pinarosa]

Hi. I'm new here and just looking for some help and advice about meds, aswell as to meet some people who may understand a bit what i'm going through.

In the past 3 weeks I have had 3 sets of grandmal siezures, one requiring overnight hospitilisation.

Now I know I need to see a dr and get medication sorted but the problem is I'm scared of what new meds might do to me. I am on 250mg lamotrogine twice daily. Which I've been told is max i can take.

Therefore I will have to either add a new drug, which last time was pregabalin and made me feel so tired I was asleep more than i was awake and felt like i was looking at the world through frosted galss...or change completely which could mean more seizures.

My firends dont understand this, they seem to think it is a simple case of popping more pills. Sad

So I guess apart from just general support I'm wondering if anyone knows of anything apart from pregabalin that could be added to lamotrogine and the kinda side effects to expect.

thank you so much

ps appologies if you post on 'your epilepsy' forum and have therefoire seen this before.

 

[brain]

:hello: Pinarosa!

Welcome to CWE and what a lovely User ID!
I must put emphasis that Anti-Epileptic Drugs
are a "trial and error" basis, and one must endure
it with patience in finding the right medication.

You are encouraged to visit EPILEPSY 101
to learn more - I have also included information
regarding anti-epileptic drugs in there as well,
so you will find that your friends are wrong in
about this "pill popping". Really with all honesty,
no person with Epilepsy enjoys having to take
medications for it! I actually take 3 of them plus
Folic Acid, think I'm a pill popper? It's needed
for seizure-control, since I don't have any other
options.

HOWEVER, there are other options available,
such as neurofeedback, and other resources,
so you're encouraged to browse around!

 

[Bernard]

Hi pinarosa, welcome to the forum. :hello:

... the problem is I'm scared of what new meds might do to me. ...

As I'm sure you probably know, there really isn't any way to tell what adverse reactions you will experience with any AED. Everyone tolerates them differently.

Once you get a prescription, we can help you find information on the most common known side effects, but that doesn't mean you will experience them (and conversly, it doesn't mean you won't experience something that isn't listed in the pharmaceutical databases).

Therefore I will have to either add a new drug ... or change completely which could mean more seizures.

There might be some other options available to you. Have a look:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Also, have a look at the diets, neurobehavioral therapy and EEG neurofeedback listed in this chart of alternative epilepsy therapies. These are all things you can try in addition to whatever AED schedule your neuro prescribes.

ps appologies if you post on 'your epilepsy' forum and have therefoire seen this before.

No need to apologize. Many members here belong to other forums and post questions in multiple places. We're all about helping where we can over here.

 

[skillefer]

Hi pinarosa! Welcome to CWE. You'll find we're a friendly group. I guess my question would be, do you know why there's this sudden increase in seizures? Have you been getting enough rest? I know when I had 3 seizures in 3 weeks, I took a pregnancy test. And yes, I am pregnant. As to other AED's .....well, as Brain and Bernard said, there's no way of knowing how it's going to effect you. Everybody is different. check out the Epilepsy 101 thread and be honest with your doc. That's the best advice I can give.

 

[RobinN]

Welcome Pinarose -
My daughter is no long on medication. We tried 4 and her seizures were different and worse. Now we do a combination of nutritional changes, neurofeedback, and supplements that support brain health.

Rebecca is in a much better place than when she was medicated. She just turned 17 and has been dealing with this for 2.5 yrs.

 

[justPassing]

;-)

My firends dont understand this, they seem to think it is a simple case of popping more pills. Sad

We all get those reactions from time to time. Ask anyone with a regular headache problem or blood sugar issue, they get it also. :soap:

Fortunately what you will find here is a lot of well structured and documented infos (thanks to all the others). Listening ears and compassion. Mind it though it can be addictive onder: ;-)

Many here are new to their epilepsy, as I am also, so do not worry about asking or testing ideas out. It could always help others.

For myself I am trying to see if I can try NeuroFeedback, but I am encountering difficulties finding a practician nearby. I will in all cases test the Magnesium supplements because I have had good results in decreasing my shakes when I was younger with oligo element based Magnesium when I was younger and I have found not counter indication between Magnesium and Keppra (which is personal hell).

As Bernard said, the interesting facts is that most proposed complements to meds is that they should normally simply make things easier.

Take care,

Philippe

 

[pinarosa]

Thank you so much for all your replies.

skillefer - My triggers have always been stress, its just recently I seem even more sensitive to it. I know why I had each siezure. 1) missed a deadline (ironically coz i was trying to avoid putting stress on myself) 2)my friend was badly injured 3) i had a neck injury (whihc turned out to be nothing) and was in a lot of pain.
Thing is in the past I have had injuries far worse than that, seen accidents far worse than my firend's and not had siezures. And how do i eliminate stress from a uni lifestyle? It's so hard.

Robin-nutrition is an interesting thing to look at as i know mine has been pretty bad recently, something else i can discuss with my dr.

Thanks again to everyone for their support I'm just struggling so much atm. I hate the way my siezures effect my friends, its them that have to worry about me when I'm fitting, hang around in hospital and generally look after me. And all this while I'm only semi conscious and not really with it enough to be worried myself.

 

[seizures4ever]

Hi there deary. You sound like you're having a hard time right now. So here's a (((HUG))). :e:

First of all, Welcome!!!

I agree with all of the other comments and suggestions. Robin and Mr. B are very knowledgable people about alternative/additional therapies. :agree:

To answer one of your questions directly: Yes, other medications can be combined with Lamictal. I have taken Keppra, Trileptal, and Klonopin with Lamictal...there may be other drugs for polytherapy with Lamictal, but these are the only ones I can tell you off-hand. Everyone reacts differently to each anticonvulsant; I'm sure your Dr. will discuss this with you.

As a side note, Klonopin is both an anticonvulsant and anti-anxiety medication. So, if you must take drugs, you might as well kill two birds with one stone right??? Just my :twocents:

Like most people, I hate pills too. I wish you the best of luck and encourage you to stand up for yourself at your neuro. and educate yourself on all options available.

Take Care. -Julie

 

[nana1]

Welcome pinarosa to CWE. This is a good place to come to and ask away on questions. Lots of people who are here, have epilepsy or loved ones with epilepsy come and feel like it a place they belong.
As for me. I am on 3 different pill`s. They are keppra, Lamictal200mg, Zonegran. I take these all twice a day. I have been on alot of pills since i have had this {had this over 50 years}. Each person has different side effects or no side effects on there added meds.

Some people just don`t understand what epilepsy is. You may have to get them information on what epilepsy is and how some meds may work, Not everything is fixed by pills.

but i do agree with everyone else.