Hey there ....

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

D

D-mo

New
Messages
13
Reaction score
0
Points
0
my name is d-mo ... and i have been living with epilespys since i was 21 yrs of age ... im now 57. I have worked through all of the drugs ... from dialantin to topamax ... and am now fully controlled ... for the last 26 years. I still take the medications ... as i know known i have epilepsy ..
I would like to provide information/inspriation to those who wish to connect.

d-mo
 
Hey D-mo, welcome to CWE!

Great to hear that you are seizure-free. What medications are doing the trick for you now?

Best,
Nakamova
 
Right now im on Clobazam or what they call Frizium up here in Canada, and Tegretal. I have stopped taking Topamax, as i found it has caused me some sight issues . but all is still going well without the topamax.
Basically the new line of AEDs have worked well with me .... the first drug that controlled my siezures was Sabril, which i took during a drug study, back about 20 years ago .. however I was forced to stop this medication, as it was colapsing my pheripheral vision, which unfortunely never returned after i stopped Sabril.

D-mo
 
Welcome and congratulations on being seizure free for so long. Take care
 
thanks all to for welcoming me ....
even tho i have been controlled ... (man i hate that word) .. i still wish to imput my suggestions/posts to this forum ..
E can rear its ugly head at any time ..

d-mo
 
D-mo said:
E can rear its ugly head at any time ..
Click to expand...

So true, D-mo, and if it wasn't for E rearing it's ugly head nearly 11 years after my first surgery, I probably wouldn't have sought out this site either. Everyone's experiences and sharing of information have been a huge help to myself and others, so grab a seat and get comfortable! :pop:
 
Hello d-mo! As a mother of a teen diagnosed with E, I am always grateful to "meet" those willing to help the newbies! Thank you for your willingness to step in and share!
 
Hey d-mo I am new to this site and I too am seizure free but I have terrible stomach problems and I think that it is because of the drugs that I take. The drugs that you are on right now did not hold me. I am on Epival and Topirmate which are notorious for causing tummy problems. Do you have any suggestions around that?
 
Welcome D-mo,

Great to hear you've been seizure free for 26 years. Let's hope it stays that way for you.

the first drug that controlled my siezures was Sabril, which i took during a drug study, back about 20 years ago .. however I was forced to stop this medication, as it was colapsing my pheripheral vision, which unfortunely never returned after i stopped Sabril.
Click to expand...

I tried that drug too (during a drug study) about 19 years ago after my unsuccessful brain surgery. I couldn't take it because of the depression and headaches it caused me.
 
Your kind of lucky Cint that you were able to stop Sabrill so quickly .. because alot of people lost their sight from this drug. Im still seeing a neuroothomogist every 6 months to monitor a growth the back of my retna and my collapsed fields.
As for the epival/topamax combination ... I used to be on Epival way before topamax, and I found the drug just zooed me right out ... my wife couldnt even recongnize my voice on the phone, when checking in on me at work so see how things were going. I never had any stomach problems with Epival ... infact i gained about 25 lbs on the drug because I ate too much ... and was so laid back ... I was doing 3000 mg a day.
Perhaps your problem with your stomach lies with topamax ... as i know this is a major issue for this drug. People loose wieght .. from my experience ... which is an indication that something does go on there in stomach land.

hope this helps .. d-mo
 
I guess having some stomach pains isn't so bad after all. I had no idea that they were giving people meds that caused loss of vision. That would truly be horrible. So much to be thankful for.
 
D-mo said:
Your kind of lucky Cint that you were able to stop Sabrill so quickly .. because alot of people lost their sight from this drug. Im still seeing a neuroothomogist every 6 months to monitor a growth the back of my retna and my collapsed fields.
As for the epival/topamax combination ... I used to be on Epival way before topamax, and I found the drug just zooed me right out ... my wife couldnt even recongnize my voice on the phone, when checking in on me at work so see how things were going. I never had any stomach problems with Epival ... infact i gained about 25 lbs on the drug because I ate too much ... and was so laid back ... I was doing 3000 mg a day.
Perhaps your problem with your stomach lies with topamax ... as i know this is a major issue for this drug. People loose wieght .. from my experience ... which is an indication that something does go on there in stomach land.

hope this helps .. d-mo
Click to expand...

Lucky?....I insisted with my epileptologist to be taken off Sabril because I was suicidal within several weeks of taking this drug. Plus I knew the side effect of blindness and I wasn't willing to risk it. And after having more and worse seizures after a lobectomy that made my depression worse, we tried many more meds, to no avail. The depression was very bad, so my neuropsychiatrist put me on a medication that brought on Type 1 Diabetes. So now I take insulin along with AED's.

Years ago when Topomax (Dopemax)first came out, I was on a higher dosage and I lost 25 lbs. quickly and was very spacey. I didn't have any stomach problems with it. And I do know Epival (Valproic Acid) is known to cause weight gain but that is one drug I cannot take. And just last week I had my third VNS surgery to help control seizures.

So I'd say you're one of the lucky ones to have seizures under control.
 
Cint life has been truly a challenge. You must be an incredibly strong and powerful woman to have survived so much. The worse side effects that I have had were my gums grew down over my teeth - very weird but not life threatening - the never ending saga of weight gain, some sedation with the old style drugs, and then this really odd one where periodically my vision would go so that the ceiling would look like the floor and visa versa and I would find myself crawling out of places kind of like the Nightcrawler on X-Men.
It's amazing what they do to us isn't it?
 
Elis,

Life certainly is a challenge. As a matter of fact, years ago my dr. actually told me that I'm a challenging patient because at the time they couldn't find anything to control the seizures or the devastating depression. That is why the psych dr. put me on a psychotic drug that caused diabetes.
Sometimes I look back at myself and cannot believe I went thru all that. It is amazing what we allow them to do when we are really down and out............
 
You must log in or register to reply here.
Back
Top Bottom