Dilantin completely compoisoned my digestive system to the point where it crippled my body and my brain. I was put on that stuff after having one fit. After that, I was unable to function for the rest of my life. That was forty ago.
Now I'm on Vimpat and have been for five years. It's causing Urticaria (hives) and I can't take anything for it. Whatever I eat just makes it worse. It's driving me insane. I'm also taking Keppra and if something isn't done about it soon I'm going to stop the Vimpat. You doctors never think of diet first. Why not?
Diet is my main trigger. docs don't want to listen about it. Simple, all organic, no preservatives, and no certain herbs/spices. I keep a health journal, it really helps.
Thanks for that, the more information the better. The patient, I think, should be part of the "cure". Knowing what details to give to the prescriber might help with the eventual drug and dose.
Thank you so much for your kind information doctor. In this regards, please allow me to tell my story to you doctor. Since 6 months ago, I had 7-8 times of tonic clonic seizure in the first three days. Currently, I’ve been on phenobarbital 100mg for 6 months by taking before bed everyday. But right now, I’m suffering with many side effects of them such as: breathing problem, low blood pressure, slurred speech, drowsiness, ataxia, temporary memory loss, concentration difficulty, muscles spam and pain, eyes dry, teeth grinding and blurred visions. All i mentioned about the side effects, I would kindly like you to give me an advice how to deal with this situation such as adjusting the appropriate dosages of PB or changing the new AED. I would really appreciate, if doctor give me some productive way. Big thank.
I was recently admitted into the hospital due to the fact that my Course of medicine I was taking started to Intoxicate me about a year ago. Which was topamax tegretol dilatin Neronetin.This was replaced with Vimpat and Topamax. What is your take on this? If you need more information let me know ?
I suffered Tonic clonic seizures for 14 years. Just over the past year, the type of seizure has changed to Atonic Clonic. I have been prescribed 200g of Carbamezapine in the day and 400mg at night. Also, 200mg of Sodium Valproate in the day and 600mg in the night. I have been taking these doses for 15 years. My question is, since now I am Atonic clonic, should there be a change in medication?
I suffered a brain injury when I was 17 and had brain surgery. now two weeks ago I had a grand mall seizure that was over both hemispheres for the first time at age 37.. I am taking 2 750 keppra pills. One in the morning And one at night.. After my car accident 20 years ago I took a combination of dilantin and lamictal for about two years and never had a seizure.. At this point all my doctors are just trying to figure it out so if you have any advice I would love to hear it.. thank you for your video..
I take depakote and it works about 50 percent of the time even on the dose they have me on. i fall in the both category from a seizure TBI. At almost five years post coma I am noticing the side effects more from the drug and going to a new neurologist for more options on a "normal" haha life.
I was prescribed 500mg valproic acid months after a conclusive episode (EEG months later showed "spikes" and my perception of the world/reality has changed ever since). I have dreadful dreams at night, I get muscle twitches from now and then (left biceps [alone] for few seconds to a minute, then later that day my left triceps, then my right arm). I get frequent headaches, mostly when i concentrate for a period of time on e.g. a video game. And I get a feeling of not wanting to do anything that is mentally demanding. And I get frequent bouts of subtle tinnitus. I didn't take the drug, it might fix anything wrong in my brain, but I don't want the cognitive side effects, I want the drug to "fix me" but keep me able to operate mentally to my "fullest ability". Any thoughts?
My only thought is "Don't decide what bad effects will happen without trying it." You just don't know, and you can't know without trying. If a med causes problems, you work with your doctor to try another one.
I take 500 mg of Zonisamide, 10 mg Onfi, 600 mg Oxcarbazepine, and 400 mg Carbamazepine. Trileptol and Carbatrol have the same ingredients. I've been taking this " cocktail" for several years. I have Tuberous Sclerosis and just wonder why my neurologist hasn't brought up changing anything. I had a surgical consult for the VNS, but taking 4 meds is crazy. I don't even know if I can remember all of the meds I've been on if we were to change them.
Alyssa, Trileptal and Carbatrol have very similar (but not quite the same) ingredients. In my experience it is uncommon for someone to be on both. If you have never seen an epileptologist (a neurologist with special training in epilepsy) then I suggest you consider it. There might be some other approaches for you to consider.
Since I turned 21(about 3 yrs ago) I have had three different neurologists. My current neurologist specializes in epilepsy and is really the only one to consider the VNS. The surgeon said in my file I'm a " STU" which I guess means I'm not interested in trying new meds. I never said that. I have pretty much made up my mind to get the VNS. I have 2-5 seizures a day( my right arm tenses up) and I'll take anything to lower frequency. I just passed my PTA boards so I kinda need control over my body. Thanks for replying!
Hi sir I m female I m having myclonic epilepsy from 17 years now I m sodium valproate I m getting too much side effects pcos ,facial hair growth .weight gain ,hair loss ,feeling sleepy too much I m taking sodium valproate morning 500 mg and night 250 mg please guide me any other medicine which I don’t get side effects and it’s good please help me
Seizure medications certainly can have lots of side effects, including being tired and forgetful. The more medicines one takes, the higher the chances of side effects like you describe. As far as self-harm, it's hard to respond. A lot depends upon exactly what behaviors are happening. The best is to discuss thoroughly with your epilepsy specialist.
Keppra (levetiracetam) is an unusual compound. A lot of folks do really, really well on it, but changes in mood or behaviour can occur, and I see this more commonly in people with mental retardation (but it can occur to anyone). There are advantages to the drug--easy and quick to start, fairly nontoxic, has an I.V. form available, fairly broad spectrum of usage. I always tell my patients that each person's brain is wired just a little differently, and so each person may react a little differently. Some people just can't use it.
Here is my problem. Getting my neurologist to truly listen to me. He continues to (based on your multiple episodes) I continue to correct him. I have had to 2 episodes. 1 in 2012 and most recent Nov 2019. Now I am taking 200 mg of Topamax a day. In my heart I don't really feel it is the right treatment. As I think I had a loss of consciousness not a seizure. I think I am being treated for the wrong thing. I had an EEG and EKG. Now I am kind of stuck with this doctor if I want my driving back to sign the paperwork for next 3 years as I have been through this nightmare before back in 2012. Or go to another specialist with all my records in the hope that someone really listens to me and re-examines all the evidence and determines if I am being treated properly. Why are doctors so quick to have you pop a pill? I really don't want to take this med for another 1.5 years. I don't like the side effects or risks to my eye sight or kidneys that were perfectly healthy before. Ugh!!!!!!!
well it hasnt gotten better with the Drs..the 2 I went to get upset if you question them or ask questions sorry to say.The best Dr ive been to is Dr.Reeves!! He will listen and explain yhings to you .Unfortunately i moved900 miles away so cant see him but highly reccomend him and sometimes feel it would be worth the trip. If the Dr. wont listen to you yo NEED to find a different dr..Ive been on primidone 250 mg 3x aday 50 yrs nit has controled it pretty well if i do my part.some small side effects but nothing i cant live with. ask about it
I went to physical therapy for the first time because of recent grand mal injuries. The nurse was hoping I had been diagnosed with Epilepsy because the office noticed a "dramatic increase" in non-epileptics suffering mysterious seizures "in the past year" so strange
Curious. I haven't seen an uptick in nonepileptic seizure-like events. There's always been a certain level of that in my practice. I certainly HAVE seen an uptick in people with vague, fluctuating symptoms ever since having COVID, getting the COVID vaccine, or both. I doubt I'm alone in that...
I have been on Dilantin for generalized seizures for 20 years. I am now 42 and my dosage has gone from 200mg to now 500mg per day. I am concerned about the long term side effects of such a high dose. Is it worth my while to investigate a new medication? Dilantin is still effective at keeping most of the seizures at bay, or at least stop it from become a generalized seizure.
In my practice you are exactly the kind of person with whom I'd sit down and discuss the pros and cons of considering a switch. There are other meds which tend to work well for primary generalized seizures (lamotrigine, valproic acid, zonisamide, sometimes levetiracetam, topiramate, to name a few). Maybe time to discuss with your neurologist!
My situation regarding seizure medications is very sad!!...............I'm allergic to: phenytoin, carbamazepine, oxcarbazepine, lamectol, valproate, gabapentin, topiramate, keppra, zonisamide, vimpat, and phenobarbital. I very well could be allergic to everything available?......If you know of an anti-convulsant that is totally different from all of these that iv'e become allergic to? Please email me a helpful comment. Thank You
I never had a seizure or epilepsy. I've been put on Keppra (500mg twice day) for a freshly discovered glioma in my brain. I'm waiting for a biopsy to know what it is. Keppra makes me sleep several hours in the middle of the day. I got authorised to cut it in half at day time to reduce the side effects. With half a dose, I can't work, I can only have a shower and cook and be a veggie zombie in front of a TV but don't ask me to understand the plot of a story. I don't get the point of being turned into a zombie to save me from something that never happened to me and might never happen whatever ends up being this glioma. I want to stop this drug at all. I can't be a zombie!!! What's the alternative?
Hello, I am so glad to have found your video today! Do you happen to have an e-mail address or web site, where I may connect with you, regarding my Epilepsy and medication, please? It is very important . Thank you so much. Kindest Regards. C.S.
I actually don't know how to send a private message in RU-vid-land! If you know how to do it, send me message. I will warn you, though, that I don't practice medicine over the internet; I do try to answer general questions and generally be helpful, but specific advice on treating someone's epilepsy is not really appropriate over the internet. I just want to be honest about that point.
KEPPRA is HORRIBLE. I love Lamictal, taking it for over a decade. Prior to that I tried Dilantin, & prior to that Tegretol. Both had terrible toxic side effects along w/ some mild depression. When I switched to Lamictal my quality of life improved. It's anti-depressive, I have more clarity, & it controls most of my seizures. When I moved recently my new neurologist recommended I switch to Keppra since I was having a couple auras each week (which was likely due to stress of moving). Lamictal in high dose can make you feel kind of dizzy & sort of drunk, so I wasn't too sure about increasing my dose, since once I accidentally overdosed Lamictal taking a triple dose on accident, stayed in bed 6 days recovering. If I accidentally skip lamictal dose I am likely to expect an aura 24 hrs later. So my new doc prescribed Keppra. She lied to me. She did NOT tell me I would be at Death's door if I accidentally skipped keppra dose.... which is of course bound to happen at sometime in life due to a variety of circumstances. I would NOT have tried Keppra if I'd known I'd have auras & grand mals for thirty hours straight every 10-15 minutes from accidentally skipping a single dose. Worse, new doc said the ONLY side effect of Keppra is "some mild depression". I believed her because I trusted her. She lied to me. Keppra causes SEVERE SEVERE depression, agitation, rage, apathy, & even suicidal thoughts. Doc also did NOT warn about the risk of anaphylaxis. My anaphylaxis shock came on slow, about 2 weeks in, begining with redness around mouth. My family noticed it, but we did not realize what was happening because it did come on so slow....and since Doc failed at warning me. My loved ones noticed a negative change in my personality. I didnt believe them & didnt care, until one day I dropped a stupid sock on the floor. I became unreasonably ENRAGED. I screamed at the sock & harshly scolded myself for being clumsy. I remember telling loved ones that I was "done being human" & that in my next life I wanted to be something else, preferably NOTHING else. I was not suicidal, I just did "NOT want to be a person anymore". When I realized accidentally skipped my evening Keppra dose, I took an extra half pill 2 hrs after morning dose, something I've always done with Lamictal. That did not help, probably made the anaphylaxis more intense. While I was seizing every ten minutes, I was also breaking out in Keppra rash & my throat was closing up. I had to eat watered down baby food for several weeks & got down to 95 pounds. We chose not to ride 16 miles to the hospital for several reasons: It was on a very stressful hilly curvy road. We know this would have made it much much worse, especially the flashing shadows from the trees. Also, I have been grossly mistreated by incompetent ERs several times & so have a rational fear about being treated in one. My friend is an ER nurse, he explained to my husband what ER would normally do to help, & that for me ER would only make it worse by causing more stress & experiments w/ other meds since Keppra was the go-to in the ER. I'd rather die in my own bed. All said, even without the anaphylaxis, I'd rather take NOTHING & have auras every day than take Keppra, that's how bad the quality of life it created.
