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Patients Epilepsy

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Topic of the discussion

Carenity Member • Community manager
Posted on
Good advisor

How many different treatments have you tried before finding the one(s) that work the best? How much time did it take you on the whole?

Have you ever stopped taking your medications? Why was that? What was the effect?

Beginning of the discussion - 4/2/18

How many different medications have you tried?
Carenity Member
Posted on

I have taken 4 medications

How many different medications have you tried?
Carenity Member
Posted on

I have taken at least 9,  two of which I have been allergic to Keppra and another one I sant remember the name of both made me violently ill,  I couldn't eat, sleep, think straight, walk, keep water down so I stopped taking them and got on to my epilepsy nurse. And gave out to the neurologist for doing it to me in the first place - they like to trsat you like lab rats don't they ?

How many different medications have you tried?
Carenity Member
Posted on

The list is too long to remember, and also what worked and what didn't. 

I have never stopped taking my medication in the 44 years I've had epilepsy... It's not worth risking! 

How many different medications have you tried?
2

Carenity Member
Posted on

I have taken many medications since I was diagnosed when 4 months old.  Im turning 38 very soon and very rarely miss a dose. 

I wouldn't stop taking my meds as even taking them diligently and having had surgery 6 years ago, has not stopped my seizures.  It has reduced the frequency of episodes though.

Since taking Clobazam with Epilim, 4 years ago, my fits are stable and I have 4 to 5 complex partial absences a month.

How many different medications have you tried?
Carenity Member
Posted on

I have now tried 17 or 18 different meds since birth. Now 52.  Nothing else left - waiting for new meds! Also have had VNS for 18 years!

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