@shivb
Sorry, I try to be faithful with my responses...but somehow, I missed this.
My brain has been taking short vacations in the memory department...so this is my best guess....I think I was taking 1000 or 1500 a day. I don't recall if they were DR or ER. At the time, I was also taking 1mg of clonazepam, which I had been taking since I was 15 years old. No neurologist has wanted to try to take me off that since I've been on it for so long.
He gave me a reduction schedule and put me on Primidone....funny, that is Mysoline and the first med I was on in 1955, Mysoline and phenobarbitol...the old days.
I remained on just Primidone and Clonazepam until I got GCA in 2019 and was given mega-doses of prednisone which affected the anit-convulsants. Then I went on Keppra, 2000 mg per day. That is where I am right now and it works for me.
I knew my family would be so worried if I had a seizure that they might think I needed assisted living...so as long as I'm seizure-free, I'm fine. As our bodies change, our chemistry changes.
I'm concerned when you said you felt your doctor didn't know enough about the weaning process...he certainly should. A neurologist over-medicated me in 1985 on 24 Tegretol a day!! I was such a mess I went to the Mayo Clinic in Rochester, and they weaned me off --- I got another neurologist. My best💞
My son went off Depakote twice once when he was 13 and the other at 18. Both times he was told to just stop it completely??? I was really concerned about this but he listened to his doctor and it was ok, a little agitated but ok. He was on 1000mg DR at age 18 and probably about 500mg at age 13.
My son went off Depakote twice once when he was 13 and the other at 18. Both times he was told to just stop it completely??? I was really concerned about this but he listened to his doctor and it was ok, a little agitated but ok. He was on 1000mg DR at age 18 and probably about 500mg at age 13.
Wow~! That is a new one to me...but always learning. I'm interested. Did he have to resume any meds after going off Depakote at age 18, or has he been symptom-free? I hope it is the latter!💞
Wow~! That is a new one to me...but always learning. I'm interested. Did he have to resume any meds after going off Depakote at age 18, or has he been symptom-free? I hope it is the latter!💞
He was off for about a month. I requested another eeg. During that test he had seizure activity and was put right back on 1000 mg of depakote. Been on it ever since. He is now 22 and living on his own. Of course I still worry about him all the time🫤. Now that he is older and working he is really feeling the effects of the medication especially the brain fog, memory issues and paying attention. I always thought it was just being a teenager:)
He was off for about a month. I requested another eeg. During that test he had seizure activity and was put right back on 1000 mg of depakote. Been on it ever since. He is now 22 and living on his own. Of course I still worry about him all the time🫤. Now that he is older and working he is really feeling the effects of the medication especially the brain fog, memory issues and paying attention. I always thought it was just being a teenager:)
@tlb101175
I'm going to be blunt~I think it is time for a new neurologist.
I've been dealing with epilepsy for 68 (I can't believe it) years now...I've had the best of treatment in Boston, the worst with one neuro in Indiana....who left me with a case of drug-induced lupus. First..I've never heard of a doctor just stopping anticonvulsants...boom...stop, outrageous. Then, when he went off it....you requested the EEG, which showed seizure activity.
I have a friend in England with epilepsy (70) who just got the right mix of meds so no more brain fog...and fewer memory issues.
He is so young, I think it would be great if he could be seen by a 'fresh-view' neuro. Where do you live? I had two grand mal as a teen, one at 31 and one at 34. But during all that time I was a single mom, running a house with 3 jobs sometimes and mentally sharp and aware. It may take some trial and error, as I experienced, but with today's advances in meds...I'd be surprised if they even had him take Depakote anymore.
I'm sure my parents worried, but I didn't. I used to work with The Epilepsy Foundation while in New Hampshire; my desire was to do away with the fear and restrictions some parents imposed on their young ones. I felt like if I fell...I'd get up. I'm proud of your son for wanting to be on his own. He has to have confidence in his ability to cope. Is he wise at 22? I had one son that was and another who just getting there. Your love for him is evident and he's very fortunate.💞
@tlb101175
I'm going to be blunt~I think it is time for a new neurologist.
I've been dealing with epilepsy for 68 (I can't believe it) years now...I've had the best of treatment in Boston, the worst with one neuro in Indiana....who left me with a case of drug-induced lupus. First..I've never heard of a doctor just stopping anticonvulsants...boom...stop, outrageous. Then, when he went off it....you requested the EEG, which showed seizure activity.
I have a friend in England with epilepsy (70) who just got the right mix of meds so no more brain fog...and fewer memory issues.
He is so young, I think it would be great if he could be seen by a 'fresh-view' neuro. Where do you live? I had two grand mal as a teen, one at 31 and one at 34. But during all that time I was a single mom, running a house with 3 jobs sometimes and mentally sharp and aware. It may take some trial and error, as I experienced, but with today's advances in meds...I'd be surprised if they even had him take Depakote anymore.
I'm sure my parents worried, but I didn't. I used to work with The Epilepsy Foundation while in New Hampshire; my desire was to do away with the fear and restrictions some parents imposed on their young ones. I felt like if I fell...I'd get up. I'm proud of your son for wanting to be on his own. He has to have confidence in his ability to cope. Is he wise at 22? I had one son that was and another who just getting there. Your love for him is evident and he's very fortunate.💞
Thank you so much for your words of wisdom:). I do always tell myself let go let God! We are seeing an epileptologist in December 🤞he is a good kid for sure his mind is just all over the place at times. We live in PA. He is currently doing a plumbing apprenticeship so that’s were all the issues with the medication seem to kick in but he is a hard worker and seems to be doing well:).
Thank you so much for your words of wisdom:). I do always tell myself let go let God! We are seeing an epileptologist in December 🤞he is a good kid for sure his mind is just all over the place at times. We live in PA. He is currently doing a plumbing apprenticeship so that’s were all the issues with the medication seem to kick in but he is a hard worker and seems to be doing well:).
He is fortunate to have you as a parent!! I'll bet he knows that too. That is super about the appointment in December, I'm sure he will experience some positive changes.
It is hard to let go and let God, but our control is limited oftentimes. It is especially hard as a parent. Giving him that opportunity to be on his own and apprentice is a gift to him. It is a gift of building self-confidence that many are denied. Good for you for doing the 'hard' thing so that he benefits. Also, when you believe in yourself, you automatically alleviate some stress. Blessings to all of you.
I always framed my epilepsy this way....if I was a diabetic, I'd have to take insulin and wouldn't think anything of it. Secondly, my brain is fine...it is active with unwanted electrical storms, but I'm fine! A person with epilepsy....is just a person. We used to have a billboard like that.
My best and please keep in touch...I just paid a plumber about $600 a few weeks ago! He is in a good field. xo💞
Chris Gautier OR Santosha | @santosha | Jun 10, 2023
Hi @tlb101175
I do agree with @grammy82. I do not believe that a good doctor who treats epilepsy just stops anticonvulsants from one day to another. I am happy to hear that you and your son are seeing an epileptologist this year.
Sorry, if I ask, but I am not from the States and I do not know well the health system in your country. Is it not possible to anticipate this visit to this epileptologist at the beginning of next semester?
My blessings to you as well
Santosha
No need to apologize. We just saw a new neurologist about 2 weeks ago and she is the one that referred us to the epileptologist. There is only 1 in their practice and 6 months was the earliest he could see him. Seems crazy right but it is that way with every specialist here it seems🤦🏻♀️
No need to apologize. We just saw a new neurologist about 2 weeks ago and she is the one that referred us to the epileptologist. There is only 1 in their practice and 6 months was the earliest he could see him. Seems crazy right but it is that way with every specialist here it seems🤦🏻♀️
Just a thought....do they have a cancelation list? Sometimes if you call every 10 days (they don't usually remember at that frequency) with the sweetest voice ever..... You never know! At least they will think of you if one comes up.😉😅💞
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My son went off Depakote twice once when he was 13 and the other at 18. Both times he was told to just stop it completely??? I was really concerned about this but he listened to his doctor and it was ok, a little agitated but ok. He was on 1000mg DR at age 18 and probably about 500mg at age 13.
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1 ReactionWow~! That is a new one to me...but always learning. I'm interested. Did he have to resume any meds after going off Depakote at age 18, or has he been symptom-free? I hope it is the latter!💞
He was off for about a month. I requested another eeg. During that test he had seizure activity and was put right back on 1000 mg of depakote. Been on it ever since. He is now 22 and living on his own. Of course I still worry about him all the time🫤. Now that he is older and working he is really feeling the effects of the medication especially the brain fog, memory issues and paying attention. I always thought it was just being a teenager:)
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2 Reactions@tlb101175
I'm going to be blunt~I think it is time for a new neurologist.
I've been dealing with epilepsy for 68 (I can't believe it) years now...I've had the best of treatment in Boston, the worst with one neuro in Indiana....who left me with a case of drug-induced lupus. First..I've never heard of a doctor just stopping anticonvulsants...boom...stop, outrageous. Then, when he went off it....you requested the EEG, which showed seizure activity.
I have a friend in England with epilepsy (70) who just got the right mix of meds so no more brain fog...and fewer memory issues.
He is so young, I think it would be great if he could be seen by a 'fresh-view' neuro. Where do you live? I had two grand mal as a teen, one at 31 and one at 34. But during all that time I was a single mom, running a house with 3 jobs sometimes and mentally sharp and aware. It may take some trial and error, as I experienced, but with today's advances in meds...I'd be surprised if they even had him take Depakote anymore.
I'm sure my parents worried, but I didn't. I used to work with The Epilepsy Foundation while in New Hampshire; my desire was to do away with the fear and restrictions some parents imposed on their young ones. I felt like if I fell...I'd get up. I'm proud of your son for wanting to be on his own. He has to have confidence in his ability to cope. Is he wise at 22? I had one son that was and another who just getting there. Your love for him is evident and he's very fortunate.💞
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Helpful -
Hug
8 ReactionsThank you so much for your words of wisdom:). I do always tell myself let go let God! We are seeing an epileptologist in December 🤞he is a good kid for sure his mind is just all over the place at times. We live in PA. He is currently doing a plumbing apprenticeship so that’s were all the issues with the medication seem to kick in but he is a hard worker and seems to be doing well:).
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Helpful -
Hug
3 ReactionsHe is fortunate to have you as a parent!! I'll bet he knows that too. That is super about the appointment in December, I'm sure he will experience some positive changes.
It is hard to let go and let God, but our control is limited oftentimes. It is especially hard as a parent. Giving him that opportunity to be on his own and apprentice is a gift to him. It is a gift of building self-confidence that many are denied. Good for you for doing the 'hard' thing so that he benefits. Also, when you believe in yourself, you automatically alleviate some stress. Blessings to all of you.
I always framed my epilepsy this way....if I was a diabetic, I'd have to take insulin and wouldn't think anything of it. Secondly, my brain is fine...it is active with unwanted electrical storms, but I'm fine! A person with epilepsy....is just a person. We used to have a billboard like that.
My best and please keep in touch...I just paid a plumber about $600 a few weeks ago! He is in a good field. xo💞
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5 ReactionsThank you and good luck to you as well. It was a pleasure talking with you!
Trish
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2 ReactionsHi @tlb101175
I do agree with @grammy82. I do not believe that a good doctor who treats epilepsy just stops anticonvulsants from one day to another. I am happy to hear that you and your son are seeing an epileptologist this year.
Sorry, if I ask, but I am not from the States and I do not know well the health system in your country. Is it not possible to anticipate this visit to this epileptologist at the beginning of next semester?
My blessings to you as well
Santosha
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4 ReactionsHello,
No need to apologize. We just saw a new neurologist about 2 weeks ago and she is the one that referred us to the epileptologist. There is only 1 in their practice and 6 months was the earliest he could see him. Seems crazy right but it is that way with every specialist here it seems🤦🏻♀️
-
Like -
Helpful -
Hug
2 ReactionsJust a thought....do they have a cancelation list? Sometimes if you call every 10 days (they don't usually remember at that frequency) with the sweetest voice ever..... You never know! At least they will think of you if one comes up.😉😅💞
-
Like -
Helpful -
Hug
1 Reaction