Zonegran Nightmare/Coping

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hi I’ve had seizures since I was 13, currently 21. I probably have 5 seizures a month( Grand mals as well as 5 or 6 focal seizures) No cause as to why I’ve had them, no genetic problems, injuries, anything. Doctors think they come up from sleep deprivation or stress occasionally. I’ve been on quite a long list of medications since I was 13 but I just started Zonegran(zonisimide) 100 mg after doing a week long eeg doctor stay. So now I am on vimpat 100 mg and zonegran 100 mg combined. It’s been a week and I already feel hollow, depressed, anxiety driven, and angry. I’ve heard about these symptoms in forums. But my doctor said the medication was working(as seen through my eeg.) I honestly just need some help with ways to cope with this anger and mood problems. Or maybe other medications that have worked for you guys? It’s been really hard and I just don’t feel like my happy positive self and I don’t want this to end up damaging me and everyone around me. Thank you!

Comments

I've tried seventeen

Submitted by birdman on Fri, 2019-11-01 - 20:03

I've tried seventeen different anti seizure meds in my 53 yrs. Many of these are from my pediatric days but I've tried many of the newer ones as well including Zonegran and Vimpat. The side effects of anxiety, anger, and aggression from many of these has been great. I separated myself from others because I was getting too destructive and didn't want to hurt others. And often the seizures were not fully controlled as well. I'm back to the old Dilantin. It works the best for me with fewest side effects. But I still have seizures so that is why I'm trying RNS. I hope you are seeing a doctor who will help you consider some drug alternatives.

There are other medications

Submitted by Patriotrehab on Fri, 2019-11-01 - 23:45

There are other medications out there and each medication affects each person differently. Like you and Michael I’ve been on a number of AEDs with intolerable side effects, but I’m currently taking Topamax 400 mg daily and I don’t experience any side effects. I was only on Vimpat a short time but I tolerated a low dose well. Keppra, Trileptal, Tegretol, Depakote and others were not tolerated well for me. But, it’s really a matter of trial an error and sometimes the side effects go away after your body gets used to the medication. For example, I had insomnia for a few weeks when I first started Topamax, but now I don’t have any trouble falling asleep and I’ve been on the medication for years. I do encourage you to do some reading on the medications and discuss it with your doctor again if the side effects do not improve.

Hi,Thank you for posting.

Submitted by Anonymous on Mon, 2019-11-04 - 08:56

Hi,Thank you for posting. Treatment and medications vary for each individual, as Michael & Gianna shared about in their experiences with seizure medications. To learn more about the medications you’re taking and about seizure medication side effects, please visit: : https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems.If you feel you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions,or assistance finding a specialist please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistIt is common for those living with epilepsy to experience feelings of depression and anxiety, so it’s important that you continue to address those challenges with your healthcare team, as well as any changes in changes in seizure types, frequency, behaviors, sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy It's also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health are just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health You may want to consider keeping a journal, or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, managing medications &side effects, setting reminders, recording medical history, moods, behaviors, triggers, and other personal experiences, which can be shared with your healthcare team. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

Hi,Thank you for posting. Treatment and medications vary for each individual, as Michael & Gianna shared about in their experiences with seizure medications. To learn more about the medications you’re taking and about seizure medication side effects, please visit: : https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems.If you feel you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions,or assistance finding a specialist please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistIt is common for those living with epilepsy to experience feelings of depression and anxiety, so it’s important that you continue to address those challenges with your healthcare team, as well as any changes in changes in seizure types, frequency, behaviors, sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy   It's also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health are just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health You may want to consider keeping a journal, or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, managing medications &side effects, setting reminders, recording medical history, moods, behaviors, triggers, and other personal experiences, which can be shared with your healthcare team. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline  

Hi,Thank you for posting. Treatment and medications vary for each individual, as Michael & Gianna shared about in their experiences with seizure medications. To learn more about the medications you’re taking and about seizure medication side effects, please visit: : https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems.If you feel you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions,or assistance finding a specialist please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistIt is common for those living with epilepsy to experience feelings of depression and anxiety, so it’s important that you continue to address those challenges with your healthcare team, as well as any changes in changes in seizure types, frequency, behaviors, sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy It's also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health are just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health You may want to consider keeping a journal, or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, managing medications &side effects, setting reminders, recording medical history, moods, behaviors, triggers, and other personal experiences, which can be shared with your healthcare team. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline