I been diagnosed with Epilepsy and so frustrated?

[Uniq_G24]

I am a heart patient and on several medications. I recently started having seizures and they got severe to one point i went into ( SE ) Status Epilepticus. I have EEG's done all the time every since i started having them and the doctor always say how they look terrible and always add a new medication. I can honestly say i am tired of it i really am and i can't handle the medication i don't want to take it they can't even give me an answer why im having them. Today i had 15 absence seizures and my father counted them all he said i might of had more but hes not sure. I am going on 24-Years-Old if that help and sometimes i can't remember anything. Should i stop these medications until they tell me actually why im having these seizures? I also get cat scans and they show swelling in the left temporal lobe but nothing is done but an increase in medication. They put me on phenobarbital but i refused after it kept me sleep for a whole day. I just really don't know what to do i mean my EEG's are f* up and abnormal and my cat scans is just idk but im really tired of going threw this. I am venting also so sorry about all the frustration i could just break down right now?

 

[vapour]

Hi I am 26 years old, I was diagnosed with Epilepsy last year, and I too have been upset with medications and frustrated... so much so it created very severe depression and I was admitted to hospital.

I am seeing a therapist.. and it might help it perhaps you do too.

I have got to hte point where now Im willing to go through all testing so that I can get the best treatment... which might be less medications.. so hang in with that... u might end up on less meds eventually if you comply etc and do the tests.

One thing that has also helped me is speaking with the therapist.. and she said to not think about the rest of my life, just think about one year. just think about only being on the amount of meds Im on now for just one more year until I get into UCLA and perhaps alternative things might be able to be done... and that has helped alot.

I am part of a research study right now also with USC... and hopefully this treatment will help (TNS)

This site has helped me a great deal, and im sure you will find alot in common with some other people here.

If you ever need to vent send me a message, or just come here.

I am sorry to hear you were diagnosed with epilepsy, its horrible, and frightening....but you are not alone.

HUGS

 

[Nakamova]

Hi Uniq_G24 --

Welcome to CWE. This is a great place to vent about the frustrations of epilepsy, and also to ask questions about what works and doesn't work in dealing with them.

The majority of epilepsy is idiopathic -- in other words, the cause is unknown -- so you may need to let that aspect go. If you feel like the swelling in your temporal lobe needs to be addressed, be persistent with your doctor until you get some answers, and find another doctor if you don't. Whatever you do, don't stop your meds abruptly (that can CAUSE seizures), and let your doctor know if that's what you're planning on doing. Any tapering off meds should be done verrrry slowly to minimize the chances that the withdrawal will provoke a seizure.

You might consider trying to identify your individual seizure triggers. For some folks keeping a seizure journal has been helpful. Tracking the kind and frequency of your seizures, as well as things like diet, metabolism, sleep, and stress can potentially help you isolate and avoid a trigger.

Take care, Best,
Nakamova

 

[McGill]

Uniq_24, I wouldn't advise you to stop taking the anti-convulsant Rx - unless you're allergic to them OR you've been given a toxic dose of the Rx. I empathize with your frustration and memory problems, especially with the absence seizures. Like you, I'm not evern aware that they occur all the time, unless I can see some obvious movements which I can't control and if I'm conscious of them occurring!

Also, ask your pharmacist about the Rx and their side effects. They know more than the drs. about all the Rx which are prescribed. Of particular interest to you should be to see if any Rx for your heart condition might interfere the the anti-convulsant Rx for seizures. I hope this gives you a bit more insight!

 

[celesteam]

Argh!

You're right. It really is SO frustrating when you first start trying to figure out the seizures. I really, really, really get it. It was even hard for me to accept it. Epilepsy? No, it is probably just an imbalance. It will stop next week. Maybe this is the last seizure. Maybe it's not really a seizure, maybe I'm just losing my mind. Maybe I've just lost my balance and become clumsy a lot, accompanied by brief episodes of unconsciousness followed by bruising and that "drained feeling." After all, the doctors hadn't figured it out and the Topamax wasn't working well for me. Then I found this site and started puzzling through triggers, keeping a log of seizure activity and doing the gluten free diet, no processed foods, and taking Magnesium. Oh, and in my case, no fluorescent lights. It all adds up to less riptide episodes (you know, the seizures that pull you under over and over again, in waves?) And with time I'm hoping we find the right meds, and more combinations that help. Here's hoping that you find them too. In my experience, the more triggers that you can limit, the less they "stack up" to your seizure threshold. Sort of like Tetris... keep the blocks down and you win! You're not alone. And I've found that it turns out that acceptance is part of the key to less frustration. We're here for you. Welcome!