Having a difficult time & would appreciate some feedback

I haven't been on much lately as I have been having a very difficult time with my drugs. I am hoping that I might get some feedback/advice etc. I know we all react to things differently but we all have personal experience with this in one form or another (AVM). Anyway, I had/have been on Dilantin and Clobazam for 7(?) years. It didn't totally stop the seizures and some other things but it was "workable". Awhile ago though new things were happening that shouldn't be so I was refered to a new neurologist (an expert in epilepsy) and his team.Did the EEG, talks, etc. and was put on Lamotrigine. Did the gradual change over but my body hated it. It even came up with one that the neuro team never heard of it doing - Parkinson's disease shakes. It didn't do anything for my original problems. So, back to the Dilantin (properly). Since then my original issues have gotten worse. Since I can't get in to the neurologist until October, my husband insisted that I talk to my family doctor and for a change I listened to him. He is a good family doctor, knows his knowledge limitations and has no problem sending you to specialists. Knowing all about the situation he has tried to help by putting me on Divalproex Sodium (generic Depakote). I have been on it for 3 weeks and my body does not like it either and is not helping with the original issues. I am willing to go a little more even though I am having so many of the side effects to see if it will change, even though one that is a "pain" is that my whole left side is in as much pain as it was after I had a grand mal seizure when I was on brain steroids 5 years ago. I am really concerned about some of the worst ones though that do have a relatively high percent of occurance. I don't want that weight gain again that they say happens often and the other is that there is a high incidence of hair loss. I don't want to lose my hair, besides liking long hair - I grow it and donate it for cancer wigs.

I apologize for rambling, lately it has been "scrambling", but I would appreciate some thoughts from others as my body hurts and my brain is really tired. Thank you.

:frowning: the after meds are the worst part! We need to be on them for one reason or another, but it is hard especially when you are looking for that glass slipper. Shakes is something that is clearly written on the info sheet as a side effect of Lamictal (Lamotrigine). I shook for a little while when I was switching from Dilantin to Lamictal. It went away as did the ringing in my ear that is another side effect. My neuro dude said the only side effect that is of true concern is the rash. The others tend to go away after being on it for awhile. How long were you on the Lamictal before you were taken off of it? No matter what the drug is your body isn’t going to like it. It is not something that is naturally found in our bodies. It all just depends on what side effect you can live with. As long as they aren’t life threatening. I hope you find your glass slipper and quickly!

I agree with Jamie,

We have to be on these pills, they come with side effects. If we didn’t take the pills we’d be in far worse shape!

I believe your body gets used to the drugs over time. If you are particularly tired you may be more aware of the side effects. As for the side effects that are listed with the meds, I ignore them as I gotta take the pills. I’m thankful to be here. I have been on more anti=epileptic drugs than I care to remember: tegretol, epilim, sabril, phenytoin etc etc. I hope you find a drug that suits you better.

Best wishes



I wish I had some really super useful info. I’ve been told to give any medication a full 4 weeks to really let it settle and let your body adjust. When I’ve changed meds or even dosages on the same meds I’ve things come and go. Three weeks does seem like it’s pushing it though. I did have a lot of lingering side effects with Depakote… depression, fatigue, tons of weight gain. I was also told by my neuro that it can be harmful when used long term so you have to have constant blood tests to monitor it to make sure it’s not damaging your liver.
The only other thing I would say is to be careful with generic anti-seizure drugs. I’ve been told by several sources that they are very unreliable. Because they’re generic, they might not be exactly the same each refill which could cause blood levels to change and break through seizures. I know everyone has their own view on whether that’s true, but it is a concern for me and wouldn’t want anything to happen to you!
Take care and good luck!