Zonisamide and Headaches: What Users Say

• bet...
• June 18, 2020

Zonisamide for Seizures "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"

• Let...
• Taken for less than 1 month
• August 27, 2020

Zonisamide for Seizures "This week I've started on 50 mg Zonegran at night, and over the next few weeks, I will be increasing to 200 mg daily. This is the 9th AED I have tried for my complex partial epilepsy. I am taking this in conjunction with 400 mg Tegretol daily and 10-30 mg Frisium daily. I experience auras daily and have seizures approximately 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!"

• Mar...
• June 26, 2015

Zonisamide for Seizures "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 effects to my body by giving more seizures and headaches."

• Anonymous
• Taken for less than 1 month
• March 2, 2021

For Seizures "5 days on this medication, and I started having very bad and scary psychotic thoughts and severe suicidal thoughts, which are terrifying. Also developed severe headaches, which had stopped with nortriptyline but started with this medication. I am STOPPING IT, as the suicidal thoughts are too much. I never had a seizure on it, which was great but not worth the side effects. Great for seizures."

• Yca...
• Taken for 2 to 5 years
• March 30, 2017

For Migraine Prevention "I have tried everything in the book preventatively, but this is the first thing that's worked with the fewest side effects that I notice (I haven't noticed any of the brain fog or cognitive issues that I know of...but maybe I have them and just don't know, lol); I'm on 300 mg for a few years now - lost weight at first, which I didn't mind at all. But recently, every time there's going to be rain in the forecast, I wake up with a migraine...I wake up, have a headache - check the weather and sure enough, there's rain today, so I take a concoction and lay back down until it goes away. I'm going back for my regular checkup next month and we're going to have to discuss options because I cannot manage life around the weather like this."

• Jes...
• February 22, 2018

For Seizures "Started Zonisamide about a week ago, and at first, it was okay. I had a bit of mind fog, and now I feel as if I have the flu. My head hurt constantly, even though I was told to take my meds at night. I couldn't sleep for hours, even though I was exhausted. I lose my breath easily and get super anxious for no reason. Even worse, I called my doctor, and they won't take me off of it. Side effects are awful."

• GMM...
• Taken for 1 to 6 months
• August 19, 2024

For Migraine Prevention "I've been taking 100 mg of zonisamide daily for 6 months. (Only after trying others that didn't work for me.) This has decreased my migraines from 4 a week to 1 every 2 weeks. I am feeling much healthier than ever! The only side effect I've had was getting tired earlier in the evening. And if I drink wine, I'll get a headache the next day. So I limit my consumption to very little or none. Overall, it has been a game changer for me, since suffering from migraines for over 40 years."

• Joe...
• Taken for 1 to 6 months
• March 19, 2021

Zonisamide for Seizures "I've been on primidone for 35 years. My doctor wanted to switch to Zonegran because of my headaches. It definitely stopped the headaches, but I couldn't sleep. However, I wasn't tired the next day either. Two weeks in, I noticed that I was having heartburn, but it was controllable. When I upped my dose to 200 mgs., it was like someone set a fire in my stomach. I called the doctor and went off of it that day. I did notice that my personality changed as well. It didn't work for me, but I'm sure others have had better results."

• Mwa...
• Taken for 2 to 5 years
• January 27, 2017

For Benign Essential Tremor "My shaking is well controlled, but I don't like the side effects I have. I am positive the problems are drug related. I have facial pain, like a sinus pain, nasal burning, occasional headaches, lips, and mouth tingle. I no longer have orgasms. I have low blood pressure, so I couldn't take certain other medications. A couple others make me very nauseous. I decided to live with the side effects of zonisamide for now."

• Anonymous
• June 9, 2018

Zonisamide for Migraine Prevention "I have been taking Zonegran for migraines for about a month. It has helped tremendously. Unfortunately, the past few days my eyes have been in so much pain. And that is causing my head to hurt. I am wondering, will this side effect go away?"

• Anonymous
• April 3, 2016

Zonisamide for Benign Essential Tremor "No help! My hand and head still shake. I have a headache, nausea, and vomiting I never had. My face is red. I have no energy and have to push myself to do things. This is not me!"

• Bri...
• October 2, 2009

Zonisamide for Seizures "Going to Zonegran from Trileptal, still waiting for the headaches, etc., from the Trileptal to go away."

• Luc...
• Taken for less than 1 month
• December 28, 2017

For Migraine Prevention "I feel ill on this drug. Headache, muscle aches, nausea, constipation, gait problems."