Telling your neuro off


Reaction score
Long story short I took a double dosage of my meds by accident on Thursday morning. I've done it before and I know that there shouldn't be any problems but I knew my neuro had said I needed to do when taking the rest of my meds during the day.

It was around 9:30am when we called his office on all the numbers we had. We just kept getting the run around from their phone system to 'Leave a message, it may take up to two days to return your call. If this is an emergency go to the ER'. Not sure how many messages my mom left on those. I'd left two messages on his website one at 9:30 and the other at 2pm. I usually get a very fast response from there. The website also has the 'Leave a message, it may take up to two days to return your message. If this is an emergency go to the ER' Even my PCP called the office and couldn't get ahold of anyone! Well this wasn't an emergency so I wasn't going to go to the ER, I just wanted to talk to an actual person to find out what to do.

I spent all day sobbing and crying just because I couldn't talk to someone. I was so upset I couldn't eat. When I sent the second message to him I guess you could say I yelled at him telling him 'THIS IS THE SECOND MESSAGE I'VE SENT! YOU'D BETTER CALL ME!!! CALL ME!!! CALL ME!!!' I felt a bit better after this and I managed to eat something but started crying again a little later on because I didn't get any sort of reply.

I finally did get a phone call at 4:30 from someone, not sure if it was a nurse or not. She said that she always checks the messages before she goes home and she saw there was one for me that needed returned. She told me the message said what I should do with my meds. And during the day I might feel tired and a little sick from having so much meds in me. If it's too bad then I should go to the ER. Who knows what time this message was left to returned because all of these things would have already happened!

It was so sweet this morning when I got up and checked my email that there was a message from her wanting to know how I was! Guess she didn't want to waist anytime with this! #$%#@

I'd like to send a message to his office, not really telling him off, but telling him how disappointed I am with the office. Letting him know that I'd spent the whole day crying because I wasn't able to get any sort of reply.

I've talked to the office before about getting off of Keppra but they don't' want to. I'm taking B6 but it still doesn't take much to get me angry. I don't know if this is also a side effect too but now it doesn't take much for me to start sobbing and crying for hours about things. This last time I cried so much that my eyes hurt. I even ruined half a vacation I'd gone on sobbing and crying because I'd gotten so mad at the hotel. Even during/after little arguments I might start sobbing and crying for hours.

If the crying is, or can be a side effect, I want to tell him because I can't handle it anymore. If it can be a side effect I want to let him know about it in the message so he will see what happened. Maybe that will make him take me off of it.
It is awful when your desperate for some kind of explanation. I believe "Keppra rage" is a very well known side effect.
My neurologist once showed me the large list of possible medications i could try.
I angrily said, "your just guessing". Educated guess was his response.
I hope you get some answers soon.
Briviact is a newer drug that is supposed to work the same way that Keppra does and *might* be better tolerated (milder side effects). It's newer though, so more $$$ and may not yet be on your insurance company's Rx schedule.

There are a few new meds and Briviact is one that I've looked at. It was over $1,500 and it's not covered by my insurance. I'd never be able to afford it.
Our insurance will only cover me for a short period on Xcopri each year. Then I have to submit all sorts of paperwork to the manufacturer--our household income, monthly expenses, etc.--& see if they approve me for their patient aid program. Otherwise, my monthly copay would be close to $600. Cost was why I switched to Zonegran/Zonisamide--I was on Vimpat at the time, & our insurance changed. The new company was requiring us to pay for it out of pocket--$1600/month!!
Top Bottom