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Nurse1911

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Hello all.
Just found this place with general search engine. Nice to be able to read others experiences.
I am coming up on 47 years old and was diagnosed with Temporal Lobe Epilepsy when I was 24 years old. I have been taking Dilantin since the diagnosis and have been seizure free for almost ten years now.
I really believe I have had epilepsy since childhood and had partial seizures for years without knowing what they were (deja vu feelings mostly). It was just never diagnosed until one of the simple seizures progressed to full grand mal.

I am lucky with being on Dilantin for so long. My only side effect seems to be easy bruising. I have considered changing meds but am very worried about losing the good level of seizure control I have achieved.

Thank you all for the personal accounts and good information to be found here.
 
Hi and nice to meet you! I've gotten a ton of help of this web site and I hope you do too.

How bad are your bruises and how often do you get them? Are they so bad that they constantly hurt? Sometimes if the medicine works good for you then you might just want to consider dealing with the side effects instead of switching to another med and have seizures start up.
 
Hi Nurse1911, welcome to CWE!

It can be a tough decision, whether to switch from a medication that is working well. Was Dilantin the first medication you tried? If so, it's a sign that you are "medication-responsive", which bodes well for any other seizure medication you might try.

Dilantin was the first med I was put on form tonic-clonic seizures. It did the job in terms of seizure control, but I found that it was starting to affect my gums. I switched to Lamictal and have been seizure-free for nearly 7 years. You might talk to your neuro about what other medications are out there -- no harm in just having the conversation. If h/she suggests a few different meds, you can research them, ask questions here, and think about whether a switch feels right.

You might also look into adjunctive alternative treatments such as diet modification -- for some, special diets can help with seizure control, or allow for a reduced dosage of medication. You can read about some of these things here:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova
 
The 1st med. I tried was pheonobarbital and it knocked me out! (I was 9) I've been on so many meds since then, I lose count. I'm currently on Depakote and Dilantin and have been for about 30 years. I am trying to get off of at least one if not both through supplements and diet.

Oh, the easy bruising - yep, that's me! I have also developed petichii (not sure of spelling) as a side effect from the Depakote. What that is is tiny red pin-point sized dots that appear on the skin. It's not all over, just my arms.

Oh, and welcome to CWE! :)
 
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