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.
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.
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?
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 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?
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
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.
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 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!
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 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!
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 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 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?
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
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
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 TH-cam-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.
![ไข้ขึ้นเลย! เมื่อแฝดโดนจัดเต็มวัคซีนครบ2เดือน🤒 [cc] แดนแพทตี้ SS2 | EP.54 |](http://i.ytimg.com/vi/z2VHItnyyvY/mqdefault.jpg)
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.
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.
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?
Whats your thoughts on treating seizures with food/diet?
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.
ty awesome data ty
What about the Zebinix stuff? It's so strong & knackers me out! Oh Lord just can't win with 'Epilepsy meds'. Cheers for this...
I would like to volunteer for clinical trials (UK)
is teeth grinding a sign of partial seizure
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?
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 take keppra 3000mgd, tegretol 600mgd, neurotin 900mgd and perampanel 8mgd... I am always tired, down and have lots of forgetfulness 😨
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.
Andrew Reeves Neurology What's your take on Keppra?
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.
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 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!
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..
Video consultation please?
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!
I appreciate your feedback. I haven't sat down with a neurologist in 15 years. I think I will ask for a referral from my GP.
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 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 Keppra 1500 am and 2000 pm I'm on 4 seizure pill in all
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?
Lamictal
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
CBD
The ketogenic diet
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
Any idea what the I.P stands for in Phenytoin I.P 50mg tablets Eptoin 50 made by Abbott? Ty
No idea, actually!
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 TH-cam-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.
What about herbs? A safer approach? Anyone have any luck with herbs?