Generic Name: Zonegran for Seizures (zonisamide)
Zonegran for Seizures Reviews
"I have been on 100mg daily of Zonegran for 1 week. Today I will be upping my dose to 200mg daily. Next week I will be upping it to 300mg daily and maxing out there for about a month to see how my body fully reacts to the 300mg daily. Zonegran, so far, is the first medication to help with the seizures. It definitely has lessened the length of my seizures, and how often. The side effects aren’t even close to how bad side effects have been on any other anti-seizure meds. I am definitely very drowsy, a little more irritable, moving slower, and feeling foggy. Have way less of an appetite and not eating early as much. I am having some headaches. Aside from that, I’m happy with this medicine so far. Finding the right medicine can be so frustrating and makes you feel so alone sometimes. Hoping this comment can help others as well! Xo"
"Zonegran has stopped my seizures, but I'd rather have seizures than deal with these side effects. I lost my job due to this medication. I am 21 years old and tried watching Harry Potter... couldn’t understand a thing. Words do not click for me anymore. I had to set reminders for everything because I can’t even remember simple tasks. Social activities are out of the question. I am so anxious and paranoid all the time. I get a feeling that someone is behind me even if I’m lying down or standing up against a wall. I haven’t battled with depression that’s been this intense before. This stuff makes me feel non-existent. All I want to do is sleep. It made me weak physically, emotionally, and mentally. It’s changing my personality and my relationships. It made me so angry and hurtful. It’s scary stuff. I wouldn’t recommend this medication, especially for those who already cannot communicate clearly due to age or disability."
"I have been taking Zonegran, 300mg daily for 8 years. I have complex partial seizures that generalize about 90% of the time. I have tried just about every other medication out there and this is the only one that has kept my epilepsy under control. I do have side effects: some depression, anorexia (defined as loss of appetite). I started this medication weighing around 125 lbs and now after three children weigh 105 lbs and can't remember the last time I was hungry, and I have noticed that it is harder for me to retain information and I sometimes have to read things twice to understand them where before Zonegran I easily understood and retained information. Despite these side effects, I won't ever try a different medication. Totally worth it."
"Zonegran, unlike Keppra and other seizure medicines, gives you a natural feeling closer to a normal feeling. Some seizures still slip by for me, but only when it's closer to my menstrual cycle or ovulation time. My seizures seem to be directly linked to fluctuations in my womanly cycles. Other than that, this medicine has been the best one for me and has been a great relief to me."
"Been on this medicine for a long time. 10 years. It decreased my seizures a lot and my headaches. Also decreased my appetite and I've lost weight, which I have no problem with. Out of all seizure medicines I've been on, I highly suggest this one!"
"I was on this medicine at first 200mg a day then 400mg. I turned into a completely different person. I'm normally a happy, positive & outgoing young woman. On Zonisamide I became extremely irritable & depressed. I flipped out over the littlest thing. I also lost a lot of weight because my appetite essentially disappeared. I weighed about 135lbs when I started and dropped to 113lbs. I finally had enough when the depression kicked in. I would have suicidal thoughts multiple times a day. It was scary and debilitating! I cried a lot, for no good reason. My performance at work and my relationships were suffering so I called my Dr. and switched to Lamictal."
"I have been on Zonisamide for 5 years. I've tried several other medications to control my seizures but always switched due to side effects (hair loss, depression, etc.). Zonisamide works the best so far for me! I love it! I haven't had a seizure in 5 years and I'm very happy with my quality of life! The only setback is my memory, I have word-finding issues big time! It gets very frustrating when I can see the person or the thing and not say the word. I have a Bachelor's degree in English, so you can imagine how annoying that is! But I would choose Zonisamide over anything else for sure! :)"
"Started taking 300 mg of Zonegran/Zonisamide my freshman year of high school and have been on it for 3 years. The drug is good at what it’s supposed to do-control seizures. However, the side effects are getting so extreme that I’m in the process of changing medicine. Lost 60 lbs, hands/feet feeling tingly, slurred speech, getting agitated, and more forgetful. Although those were tolerable and pretty mild, I started experiencing cloudy urine that would be incredibly painful and, at this point, unbearable. If you're thinking about taking this medication, make sure to DRINK WATER!"
"I have taken Zonegran (brand name only) for about 15 years. I have been seizure-free for all 15 years. Prior to that, I was on Topamax (brand name only) and was seizure-free for 4 years. I had one seizure in that time due to exposure to mold. Zonegran is the BEST medicine I have ever had. I do have word-finding and short-term memory issues that are frustrating, and sometimes I experience involuntary jerking of my limbs as I'm trying to go to sleep. In all honesty, I would not use anything else. I don't have to worry about seizures. I just take the meds and live my life. So much so, I am finally driving a car, which is something I thought I would never do because I didn't trust my meds!"
"I took Zonegran (zonisamide) for approximately 4 weeks. That should tell you something. I knew by the third week that something was wrong with me. This drug ruined my thinking process. I got 'brain fog,' was unable to concentrate or focus on anything more than 2-3 minutes. I could not remember 50% or more of anything I read or was told. It made me depressed and discouraged, and I completely lost interest in nearly everything. It began to affect me emotionally, and I became extremely irritable at times. It also made me very sleepy and reduced my appetite tremendously. *Worst of all, it did not stop my seizures. Zonegran must be one of, if not the worst anti-seizure medications I've taken in my life. I don't recommend it."
"Our daughter is 5 years old and is on Zonegran for epilepsy, along with other AEDs. She has had problems since about a week after starting Zonegran: lack of memory and information processing. She is very slow now and has a hard time finding the correct words. She is also very sleepy. At this point, we have actually seen an increase in seizure activity."
"This drug Zonegran made me angry, depressed, and generally uninterested in life. The cognitive effects are pretty severe as well. Almost lost my job due to my performance while on zonegran. When I stopped taking it I felt like someone lifted the fog and turned the lights on again. \"
"I have recently been on Topamax and Keppra, both maxed out. My headaches were worse and my seizures were still happening. My doctor finally switched me to Zonegran 3 months ago. I am seizure-free, headaches have been much better, and I feel a lot more normal. I do have a low appetite, but not to where I can't eat. I love it!"
"Seizures decreased in frequency. Partial seizures. But there was one day of uncontrollable, uncomfortable side effects or a seizure of a different type. I had trouble organizing thoughts, couldn't come up with certain words, and felt extremely hostile at times. Never want to have those feelings again. They were very strong and uncontrollable."
"I have been taking Topiramate for complex partial seizures following my second subarachnoid bleed in 2005, but started to lose my hair, so I am now taking Zonegran. Since changing over, I feel very well, and the hair loss seems to be much improved, and I am feeling great!"
"I've been on this for over 6 months now and seizure-free since then. I do have a very mild loss in appetite, but that has not stopped me from eating, only how much I eat. Side effects are the lowest overall from all the other medicines I've been on in the past (Topamax, Trileptal, Depakote, and Phenobarbital). Best of all, it's only once a day!"
"So far, this is my choice of seizure medicines (complex partial and absence). Dilantin makes me sleepy, Tegretol and Topamax both gave me migraines. No seizures AND no headaches, yay! Zonegran does leave me a bit fatigued and seems to lessen the appetite (but that's not really a bad thing)."
"This is one of the worst AEDs I've tried over the past 41+ years since surviving Reyes. It caused hostility, agitation, nervousness, restless legs syndrome, suicidal thoughts, and made me so impulsive that I requested an early retirement from a position paying about $104k per year. I probably would have not gone for retirement if the effects of the med had not been there. To top things off it gave me gingival hyperplasia so my front teeth are ruined, gum overgrowth is worse than it has been while on any of the other 24 meds I've been given. Intractable epilepsy is tough but this med might help persons who haven't had trauma or brain surgery. FDA and the maker FAILED to warn me about this. I got off of it."
"Taking 800mg of Tegretol, 200mg of Pregabalin, 10mg of Clobazam & 100mg of Zonisamide twice a day plus 125mg of Primidone once at night didn’t work on me. Even after having part of my brain removed didn’t completely stop me from having seizures but increasing Zonisamide to 150mg twice a day thankfully stopped me having seizures in 2010, I’d suffered with them for 9 and a half years. Certainly would never reduce these - I got my life back in my thirties so can do all I used to. Cope with going to soccer matches alone & abroad alone, I didn’t even leave town I lived in alone when suffering with epilepsy. I live in the UK so lucky as do not pay for these."
"I've had complex partial seizures for 14 years half of my life the longest I've went was 3 weeks without a seizure. I have had two brain surgeries also have the Neuropace implant. I've been on so many different seizure medications, still am but my doctor wanted to try me on Zonegran a few weeks ago. Raising the dose every two weeks. I was terrified of the side effects but also happy of one of them, the weight loss because I really need that, this medication so far has helped me beat my record in 14 years become one month seizure free!! And I'm not even on my full dose yet! And I've lost 11 pounds! I really recommend trying out this medication it might not work for everyone but it's worth a shot. The side effects can be rough at first but my body got used to it."
"I love Zonegran. I have no seizures while on this medicine. The only time I experienced a partial seizure was recently when I began including yogurt in my daily diet. Since I excluded that, I'm seizure-free again."
"I was really hoping Zonegran would be my golden ticket to no more complex partial seizures. Instead, I’m having not only more, but have tinnitus. The screeching in my ear is so loud I’d swear people can hear me coming. I’m sure it’s fine for some, just not in my case."
"This week I've started on 50mg Zonegran at night and over the next few weeks will be increasing to 200mg daily. This is the 9th AED I have tried for my complex partial epilepsy. I am taking this in conjunction with 400mg Tegretol daily and 10-30mg Frisium daily. I experience auras daily and have seizures approx. once a week. Since starting this drug, I have not experienced any auras or seizures...however, it is too early to know if it is actually working. The side effects so far have been rather uncomfortable. This includes headaches, nausea, loss of appetite and feeling more tired/foggy than usual. Hoping the side effects will lessen over the next few weeks!"
"Effective prevention of seizures, but I only had two episodes 16 months apart started at age 57. Started at 25mg twice a day, increased to 50mg. Was prescribed to go up to 100mg but requested to stay on the 50mg as I had no episodes and didn't like the effect it had on me. I am now used to it but it makes me drowsy. Big downside is I have just found out that I have osteoporosis and it appears that zonegran is contributing to accelerated leeching of my bones. Will be discussing with neurologist in a couple of weeks."
"I took the medicine for 17 years after I had A VNS implant for my seizure disorder, the brand name medicine I considered to have the most positive experience in removing them overall, as the generic brand names had all side affects to my body by giving more seizure's & head aces ."
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