Can't handle the side effects any longer

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my2boys99

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I've been on Zonegran for about 2.5 weeks now (200 mg now) and the nausea has been getting worse every day. I feel like I have the flu. Not only do I not want to eat, I don't want to do anything, I feel so sick.

I also wake up feeling super anxious and worried. This is new for me. I feel super anxiety throughout the day for no reason. So between feeling like I have the flu, feeling horrible anxiety and having NO motivation to do anything, I am going crazy.

I lowered it to 100 mg a few days ago (Dr said I could if the itch I had continued, which it didn't), and didn't take one last night because I was so nauseated. I don't know if I can just stop at 100 mg since I've only been on it for a little over 2 weeks or if I have to go down more gradually.

They still don't know if I had seizures or migraine auras. I'm having my EEG this Wed.

I know Zonegran has a long half life, and I still feel super nauseous today. How long might this nausea last?

I will call my neuro tomorrow and hopefully she will allow me not to take anything until after my EEG (if it's abnormal).

Anyone else ever have such severe nausea from their med (or anxiety)?
 
Hi my2boys99,

I was on the same drug yrs. ago and it was terrible the drug increased my seizures and made me very moody. I do know that some of the side effects you are mentioning are from the drug such as nausea, anxiety and having no energy. This drug can mess a person up and cause mental problems also. Be sure that the neuro calls you back tomorrow I know when I had these problems I had to get off the drug and then I went on Diamox and that helped me a lot. I hope you feel better soon and May God Bless You!

Sue
 
Thank you Sue! I seriously started to feel so bad. It's weird because I was on this med before about 10 years ago. I had no side effects! But I also went on after Topamax and VERY gradually. This time, I started at 100 mg and after a week, went to 200. I think either it was too fast a titration or my body just doesn't like it 10 years later (or both!).

Thanks again, I can't wait to start feeling more normal again.
 
Person's Body Can Reject A Med After Previously Taking it!

It is possible that your body built up a tolerance to the med when your took it 10 years ago. That tolerance may be causing your body to reject that med now. This rejection may be what is causing you to have the nauseous reactions to taking the med again after those 10 years.
I have seen people who have had totally different reaction to a med the second time that it has been prescribed to them.
Your body could have changed a lot internally in those 10 years! This could make your body unable to handle the med a second time! :twocents:

ACsHuman
 
I'm surprised they've given you meds before an EEG? Surely that might affect the result?
 
Porkette said:
Hi my2boys99,

I was on the same drug yrs. ago and it was terrible the drug increased my seizures and made me very moody. I do know that some of the side effects you are mentioning are from the drug such as nausea, anxiety and having no energy. This drug can mess a person up and cause mental problems also. Be sure that the neuro calls you back tomorrow I know when I had these problems I had to get off the drug and then I went on Diamox and that helped me a lot. I hope you feel better soon and May God Bless You!

Sue
Click to expand...

I had the same reaction when I was on Zonegran many years ago. I think that came at the end of my Depakote to Topamax to Zonegran nightmare period. I hope that your doctor can find an alternative that at the very least will have fewer side effects. Never had to live with the nausea, but it doesn't sound fun.
 
I'm starting taking that in a couple of weeks, since I've heard such bad things about it I am waiting until after my birthday to test it...

When I was on Keppra I got really screwed up mentally and they put me in hospital so that they could take me off the meds quickly and safely.
Maybe they could do the same for you if you asked?

Sent from my SM-G920F using Tapatalk
 
Well, I thought it was kind of weird that they put me on an anti seizure med before my EEG too, but I figured it was because they didn't want me to have a seizure during driving or something like that.

I am calling the office this morning to see what they say, but I just can't take the anxiety/mood changes it's causing.

As far as the nausea goes, my husband thinks I might have a stomach bug because it got so severe the last 4 days (I had nausea the last few weeks, but not this bad). All I can do is drink Canada Dry on ice and eat very bland foods in small amounts. I haven't vomited yet, but I feel like if I looked at a toilet long enough, it'll happen, lol.

I think since I've only been on it for a few weeks, going off it shouldn't be a problem. We'll see...I'm calling the office now.

Thanks again!!
Jane
 
I was put on meds before my first EEG, and I had tried 3 meds before a 72 hr EEG aided in a positive epilepsy diagnosis.
 
Just left a detailed email for my neuro. It's so much easier than trying to leave a long message with the receptionist. :)
 
Zara-Newman said:
I'm starting taking that in a couple of weeks, since I've heard such bad things about it I am waiting until after my birthday to test it...

When I was on Keppra I got really screwed up mentally and they put me in hospital so that they could take me off the meds quickly and safely.
Maybe they could do the same for you if you asked?

Sent from my SM-G920F using Tapatalk
Click to expand...

keppra is terrible. wow.


ive gone on and off of it a few times. But Zonegran isnt fun either....

Its almost like pick one, they are all bad, just sift threw them til you find one that fits you in a sense.
 
Well, I thought it was kind of weird that they put me on an anti seizure med before my EEG too, but I figured it was because they didn't want me to have a seizure during driving or something like that.
Click to expand...
After my first seizures, when I was awaiting official diagnosis, I was on meds during the EEG -- it would have been too risky otherwise. But my EEG still produced a "classic" brainwave pattern associated with epilepsy, so the diagnosis was very clear. It depends on the individual, but being medicated doesn't necessarily mean that the EEG will come up negative.

I had a bad experience with Zonegran too. Dilantin no problem, Lamictal no problem, but Zonegran...ugh.
 
I must say, people are really making me dread going on Zonegran...haha

Sent from my SM-G920F using Tapatalk
 
Sorry about that Z-N! I hope Zonegran works perfectly for you!
 
So my neuro called me back a few days ago. She said it was perfectly fine to go off the zonegran. She said we will just do the EEG and see how it comes out and go from there (I haven't been having any of those weird auras, who who knows what's going on). I just had my EEG this morning. This is my 5th one, and I forgot how horrible the breathing part is. My mouth gets so dry! Three minutes is a long time to do that breathing! And it makes me feel light headed.

I told her I was on Zonegran for several years with no problems, but I titrated up a MUCH slower pace (started at 25mg, increasing 25mg per week). And I'm not sure I was ever at 200mg. She had me start at 100mg for one week, then go to 200mg. I think my body just couldn't handle it that fast.

And as for the change of mood/anxiety, she said she's never heard of that as a side effect of Zonegran, which I find very strange since it's listed everywhere online as a side effect. But she did say that everyone reacts differently, so anything is possible.

I guess I'll just wait to hear about my EEG, hopefully this week.
 
Ugh, sorry you are having those problems. I had mood and anxiety problems from both zonegran and keppra. With zonegran, the anxiety crept up on me over time and continued to get worse. It affected my life in a big way, and it took me some time to realize the medication was to blame. I was on zonisamide for almost 2 years, it took several months to really get back to my normal self after getting off of it. Every day I am thankful I was able to get off it. It did help my seizures for a little while though. And I know some people do well on it.
 
gymrat827 said:
Its almost like pick one, they are all bad, just sift threw them til you find one that fits you in a sense.
Click to expand...

I agree. And Zara-Newman, I'm really sorry if we've scared you. I don't want you to assume you will have a bad experience with it. You might really like it.
 
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