Thank you for the info. My son is starting this now. We are hopeful that it helps control his seizures. God bless you and everyone living with the struggle. We all pray for a cure.
You have no idea how helpful this was!! I was diagnosed with epilepsy and given this medication with hardly any explanation and I’ve been having just weird feelings and just anxiety I guess and it’s hard to describe but I recently just had a kidney stone! Now my diet wasn’t necessary the best either but I’m also not huge either I’m 6’6 190 now probably because I went like 4 days without eating, from the kidney stone just from pain and throwing up everything. I’m getting back to normal now but it’s not easy. I get nauseous when I want to eat food and it’s hard because it’s food I really usually enjoy. I just don’t know what to do to help that because I don’t want to get to skinny.
Wow. Hope it didn't noob you that bad because when I took this food was so gross. Have to do nephropathy forever now I dunno if this caused it or a induced seizure.
Nice to see you, even if it's on a RU-vid video! Just wanted to let you know, if it helps any, I am on 400mg of zonisamide twice a day right now and just had my 5th child! She just turned 6wks on Wednesday. I have been on zonisamide during all of my pregnancies, not lessening the dose, raising it during some, and all of my children have been born very healthy with no abnormalities except my now 3yr old having an aortic ring on his heart. He had that fixed and is also a very healthy boy. Zonisamide did cause a kidney stone, I didn't know about it until last year, and it was 17×26 in size. So, overall, it has been a good medication taken with levetiracetam (keppra) and my VNS. Even though my seizures are still not controlled. But it does work very well for pregnancy, at least it did for me as far as safety of the babies!
Holly, thanks for sharing your thoughtful comments! I've found so many people who don't take the "normal" dose, or don't react to a medication the "normal" way, that I always emphasize the your-mileage-may-vary aspect of medications. I hope the kidney stone issue has gone away for you. I'm sure you're drinking a lot more water now....
@@123mja123 I had been on it for 10+ years before it formed. It was found during a pregnancy, by that time it was thought to be there for at least a year or 2. But it's been free sailing since that one! I have only had that one.
My son started on keppra when he was 14 almost 15. He has had 2 major seizures before keppra and 1 major 4 years later. Now he’s almost 20 and had 2 mild seizures, his neurologist is going to start him on 100mg of zonisamide & then work him up to 200mg once a day at bed time. He’s been on 2,000 mg of keppra for 4 1/2 years. I appreciate you making this video because I don’t believe in playing God with my child’s life & I am hopeful that he will not have anymore break through seizures with this like he had on keppra. And I hope we can keep the dosage low. Thank you for making this video!
It does NOT work for me. I get seizures regularly. I am on 400mg. daily. I did not lose any weight. Yes, tired, stupid, sleepy! Plus suicidal thoughts. I am going to request to be removed!
5 years ago My mom had 3 seizure in one night because she mixed alcohol and nyquil, ever since that day she has been taking seizure medication because she doesn't have the coverage for a MRI so that's why her doctor wanted her to get treated for seizures, I feel like she doesn't need medication for seizures if she isn't had anymore seizures please help me understand this better. Thank you
🗣️ listen to your first mind if she only had one sezuire than they just giving her that medicine for nothing that the same medicine I take for my sezuire they 👨⚕️⚕️ dignose me with eplisey after a brain tumor 🧠 removal and I got prescribed with them for my eplisey sezuire and I only can take the night sezuire medicine 💊I can't take the morning sezuire medicine 🙁 I'm allergic to it they didn't even know I was allergic to it until they seen me on a check up with my face swallowing and rashes all over my body ‼️
I was prescribed 100 mg Zonisimide for Auras. Have never had a bodily seizure. This medication caused heart palpitations and pauses. Had only taken two weeks. Stopped 100%.
I’ve been on this medication for a year. 100mg a day. 50mg am and pm. I want off of it. Although it has seems to help with my seizures, I do not feel like the same person I was a year ago. It wakes me up. And worst of all, I now have at least 6 to 7 bowel movements every day. Sometimes I will skip a pill for my nighttime dose so I can get a good nights sleep. But when I do that, half way through the night I wake up with my entire chest area of my t-shirt soaked in sweat. I know everyone is different. But that is my experience with this medication. I absolutely hate it.
Since you are a neurologist, I hope you can help me clarify some things: -How can someone know they are having seizures (temporal lobe seizures) in their sleep, without having to do a sleep study? -If someone is having temporal lobe seizures, and they're having low motivation, anhedonia (if those symptoms were due to epilepsy, can an antiepileptic relieve those symptoms)?
Yes I have sezuire in my sleep 😴 also it call grand mal sezuire they dignose me after a brain 🧠 tumor removal 😔‼️🙏 I died and came back than they dignose me with eplisey ☹️my life been kinda hard I'm only 24 I'm still learning more about my brain disease 💯
What about pins and needles in hands and feet? Or eye floaters? Topiramate was working great for my anxiety and panic but the side effects are not pleasant
This was very informative. I am actually off of zonisamide its been a week bc i was having a bad reaction to it (bleach odor on skin, severe hyperhydrosis, constipation). I am just wondering when the side effects will go away bc its been a week and i’m still experiencing the excessive sweating and its rly debilitating.
Well, the half-life of zonisamide is usually about 60 hours, and it will generally take 5-7 half-lives for the medicine to clear out completely, and then your body has to recover a bit, so...it often takes a while for medications like zonisamide.
@@FormerTrucker Thank you for responding! I guess I won’t know how it will affect me until I try it. I hope it’s worth the risk? I’ve read some scary 💩!
Yes everyone is different. My 14 year old daughter has been taking this for 2 months and it gets her sleepy and has constant constipation. She takes it in the evening and takes 300mg.
hi my husband last year went into cardio-respiratory as a result of the hypoxic injury he developed Lance Adams Syndrome .He has very bad jerky movements of his muscles which means that he cant walk use his hands even .Due to the myoclonus he is unable to produce fluent language i would like to know if zonisamide would help him with the jerky or if you know any other tables that would help him thanx
Do you know if zonegran can also lower your white blood cell count? Ever since I started it last month I’ve felt extremely sick and recently visited the hospital and they told me my white blood cell count was very low and so I looked it up on the internet if it could be the cause, but you know you can’t believe everything you read…
It can happen, actually with a variety of seizure meds. Most of the time the person doesn't have any problems with it, however. If the person isn't having frequent or severe infections, I usually don't do anything.
Thanks, Marco! Considering that the COVID-19 "lock-down" just started here, things are going OK right now. Besides being a neurologist / epileptologist, I am also the Medical Director where I work, so my leadership demands just increased significantly. Oh well...it goes with the turf. I hope you all stay safe and coronavirus-free!
Ive been prescribed this medication for my chronic migraines. Im supposed to take it for 6 months. The doctors told me it would make me sleepy but I should adjust after 3 weeks or so and the drowsiness should go away. Do you think it’s possible? I feel very unmotivated, I just feel like lying in my bed all day and I’m only taking 100mg a day 😱 is there any chance it will change with time? (It’s been only a week since I’ve started). Thank you so much!
You mention it can cause kidney stones from side affect, Im set up for another CT scan,, i was prescribed this drug by my Neurologist , but desided not to take it at that moment, now I’ve desided to begin taking after a week, I’m seeing my Urologist for Abdominal pain,back pain,is this medication safe or if I may have kidney stones,THANK YOU 👍
Thank-you, Dr. Reeves. I do not suffer from epilepsy but will learn more about this medication and how it might relate to Parkinsons, for family. Forgive me if I have already asked this. Are you available for distant consultations? I am able to send a copy of my Brain MRI. I do not require a Diagnosis. I really just want an expert pair of eyes to review my Brain MRI so I can ask specific questions. This isn't the way to really contact you. I will find your formal contact information. Thank-you, Darlene
A friend who is an excellent neurologist tried to recruit me to work in Banff years ago, actually. I called him to recruit him to work with us when I worked for Mayo, and the guy turned around and offered ME a job paying more! Lol! Mrs. Reeves *hates* to move, so I won't be moving to Canada (or anywhere else) any time soon :-) ! Best of health to you, Darlene!
Hey, I've been a longtime fan of your work; as my neurologist would never tell me what actual side effects there are on the medications I'm taking and just uses the excuse 'well all medications have side effects!' without even a second thought about how each one can affect me personally. As someone who's currently going through switching medications because my Keppra gave me pancreatitis, would you suggest Zonegran, or Dilantin? I was thinking about Zonegran after watching your videos, but I'm really not sure. I had the choice to choose Lamictal, but after this pancreatitis scare; the last thing I need is to chance myself with getting SJS. Thank you very much for all of your help, and the videos you make; they help out a lot of people including me!
Every case is different to some degree, of course, but I can say that we don't use too much Dilantin these days because it tends to have more side effects, both in the short run and the long run. Good to discuss with your neurologist, or at least some neurologist who will listen....!
@@andyreevesarchive528 Thank you very much, you saved me! I called them and let them know that I want to get on Zonegran; not Dilantin due to the long term permanent side effects you get! To be clear, I even relied on your videos years previously when choosing which medications would work for me, because the freaking neurologist wouldn't tell me! I can't appreciate you enough for all of your work!!
@@andyreevesarchive528 Update, they seem to have put me on 100 mg tablets at bedtime, is that too much of an introductory dose; or does that sound about right?
@@andyreevesarchive528 Thanks! Just wanted to get a second opinion on the matter. I just want to let you know again, that I really appreciate everything you do! Hopefully this works out better than keppra..
