Seizures despite medication

Posted by oyeks @oyeks, Mar 16 5:54pm

I have a child age 16yrs we noticed she had seizure time to time like in most cases 4-5 times in a month and she still on her med (trigetol 200ml) yet it’s still same please is there any other med that will be good for her?

Liked by Leonard

What type of seizures does she have? Different meds are used for different types. My daughter, has clinic, pseudo and another type. She is currently taking lamactal 250 mags 2 times a day. She hasn’t had any since around 1/31/2020, however we believe it w stress related.

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Hi @oyeks – I'd love for you to meet @johnbishop @jakedduck1 @crstyday40 and @dawn_giacabazi, who might have input on your daughter's seizures despite medication.

What does your doctor say about the fact that this medication is not working as well as you'd hoped?

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Hi @oyeks, I'd like to add my welcome to Connect along with Lisa @lisalucier and other members. I have no experience with Tegretol (Carbamazepine) but the Epilepsy Foundation has some good information on the drug that may provide some answers for you.
https://www.epilepsy.com/medications/carbamazepine

Liked by Lisa Lucier, Leonard

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@oyeks
Hello,
Yes, There are many other epilepsy drugs some are for Generalized seizures others are for focal seizures.
Do you know what type of seizures your child is having?
How long has s/he been on Tegretol?
Has the physician ever tried different medications or increasing the strength or adding additional medication to it?
How long has your s/he been having seizures?
It can take a long time to find the right medication or medication cocktail.
After 44 years my seizures stopped for whatever reason. I am currently on Tegretol & Phenobarbital. Well actually the brand I take is Carbatrol (both are Carbamazepine) which is a brand name extended release form.
One thing which is very important in people with epilepsy is that if you start on a generic you should stay on a generic and always make sure you get your medication from the exact same manufacturer. do not switch from brand generic generic to brand or between different manufacturers. Although some people are able to switch and not have seizures I’m not one of them and I know many many people who are very susceptible to the differences and have breakthrough seizures when they try to change. Hospitals always switch you to a generic so if you go to the hospital either take your own medication or demand your particular brand or manufacturer are used. they will normally confiscate your medicine and hold it in the pharmacy and dispense it that way which is fine just be sure it’s the same that you regularly take. I have known a lot of people who went to the hospital and started having seizures and when they were switched back to their usual brand or to their usual manufacture their seizures stopped.
There are over 30 different types of seizure medications, some strictly for generalized seizures some strictly for focal seizures and some for seizures within those broad categories and some for specific epilepsy syndromes.
If I were you I would ask your Neurologist for an extended release version of Tegretol and I also ask him if a second line anticonvulsant would be beneficial. i’d also ask if an increase in Tegretol is a possibility.
Is your child having the Tegretol level in her blood measured on a regular basis at the lab? If she’s not get it done. Som Neurologists think that it only needs to be done once a year, in fact I had a neurologist who said that and I said I want it checked now and he refused so I drove to my primary care doctor in a nearby city and she gave me the order however about halfway to to lab I had a focal seizure fortunately my mom was with me and she got the car off the road and stopped. But I crawled over the top of my mom and walked out onto the highway thankfully a security guard helped get me back to safety. My blood level was 2.9 it should’ve been 14. Don’t think for a second that doctor didn’t get all and more than he deserved. Doctors aren’t gods although many of them think they are. if you’re not getting adequate treatment move on and don’t look back.
I wish the very best for your child and for your family I’m sorry that s/he is going through this, i’ve had Epilepsy for 53 years.
Jake

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@ destinysmom
good morning,
I am assuming that if in fact your daughter is having psychological seizures or psychogenic nonepileptic seizures (PNES), you are aware that the anticonvulsant medications will not help. Is your daughter having other types of seizures? How do you know that your daughters seizures are pseudo seizures, which is old terminology and rather insulting which I think is why it was changed. Sadly if someone is experiencing seizures and they have an EEG (electroencephalogram) and it turns out normal some doctors make the assumption that the patient is having Psychogenic seizures which often is not the case.
Wishing you your daughter and family the best of luck,
Jake

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@jakedduck1

@oyeks
Hello,
Yes, There are many other epilepsy drugs some are for Generalized seizures others are for focal seizures.
Do you know what type of seizures your child is having?
How long has s/he been on Tegretol?
Has the physician ever tried different medications or increasing the strength or adding additional medication to it?
How long has your s/he been having seizures?
It can take a long time to find the right medication or medication cocktail.
After 44 years my seizures stopped for whatever reason. I am currently on Tegretol & Phenobarbital. Well actually the brand I take is Carbatrol (both are Carbamazepine) which is a brand name extended release form.
One thing which is very important in people with epilepsy is that if you start on a generic you should stay on a generic and always make sure you get your medication from the exact same manufacturer. do not switch from brand generic generic to brand or between different manufacturers. Although some people are able to switch and not have seizures I’m not one of them and I know many many people who are very susceptible to the differences and have breakthrough seizures when they try to change. Hospitals always switch you to a generic so if you go to the hospital either take your own medication or demand your particular brand or manufacturer are used. they will normally confiscate your medicine and hold it in the pharmacy and dispense it that way which is fine just be sure it’s the same that you regularly take. I have known a lot of people who went to the hospital and started having seizures and when they were switched back to their usual brand or to their usual manufacture their seizures stopped.
There are over 30 different types of seizure medications, some strictly for generalized seizures some strictly for focal seizures and some for seizures within those broad categories and some for specific epilepsy syndromes.
If I were you I would ask your Neurologist for an extended release version of Tegretol and I also ask him if a second line anticonvulsant would be beneficial. i’d also ask if an increase in Tegretol is a possibility.
Is your child having the Tegretol level in her blood measured on a regular basis at the lab? If she’s not get it done. Som Neurologists think that it only needs to be done once a year, in fact I had a neurologist who said that and I said I want it checked now and he refused so I drove to my primary care doctor in a nearby city and she gave me the order however about halfway to to lab I had a focal seizure fortunately my mom was with me and she got the car off the road and stopped. But I crawled over the top of my mom and walked out onto the highway thankfully a security guard helped get me back to safety. My blood level was 2.9 it should’ve been 14. Don’t think for a second that doctor didn’t get all and more than he deserved. Doctors aren’t gods although many of them think they are. if you’re not getting adequate treatment move on and don’t look back.
I wish the very best for your child and for your family I’m sorry that s/he is going through this, i’ve had Epilepsy for 53 years.
Jake

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Dear all,
I am truly happy connected to this great platform,all your ideas are quit encouraging and are welcome,
My child case is not a focal seizure but each time it occurs she fell down and her body became stev and she jeck say like 2-3mins after which she will fell asleep for like another 10min though our doctor did not specify the type as per say but i think going to the lab is necessary, she has been on tegretol for almost a year now,

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@jakedduck1

@ destinysmom
good morning,
I am assuming that if in fact your daughter is having psychological seizures or psychogenic nonepileptic seizures (PNES), you are aware that the anticonvulsant medications will not help. Is your daughter having other types of seizures? How do you know that your daughters seizures are pseudo seizures, which is old terminology and rather insulting which I think is why it was changed. Sadly if someone is experiencing seizures and they have an EEG (electroencephalogram) and it turns out normal some doctors make the assumption that the patient is having Psychogenic seizures which often is not the case.
Wishing you your daughter and family the best of luck,
Jake

Jump to this post

Good Afternoon,
My daughter does have seizures coming from both the left and right temporal lobes. I am also aware that the meds she takes are not for PNES. She started having the psychogenic seizures after working at a job she liked, but with ( NLVD ), Nonverbal Learning Disorder. ( this name also needs to be changed as she can and does speak very well ). The people she worked with did and still do not understand what NLVD is. They made her feel worthless and would give her more and more to do while others would watch. She became very stressed out. The morning I took her to work she had told me she wanted to stay home but was afraid of getting written up. She was only at work maybe, 15 minutes before someone found her seizing in the break room. By the time they called the ambulance and it’s arrival at her work, she had had 3 more. The paramedics told me they looked like grandmal seizures and that was what I also thought.According to the Dr., after 2 days of video EEG monitoring ). I was told that she was having psychogenic seizures I, myself was and am still not sure if I totally believe that she was having PNES but I am not a Dr.). While at the hospital they also found that she has POTS and are telling me that this to was probably caused by the stress she was undergoing. After a few months, she found a substitute teaching position and on her first day while another teacher was going over the schedule with her, she passed out and started again with the seizures and POTS. She has yet to find another job and now would prefer to try and find something that she can do from home. She is so afraid now to work outside the home. Destiny, Bachelors Degree in English and loves to read and edit. I do wish we had better Drs. as well as resources to help her find a job that she would actually look forward to.
Sorry, I didn’t mean to take up so much of your time. I could, like others write a book about all the health issues she has, as well as the fighting I have done with schools, Drs., colleges and so on.

Heidi

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@oyeks

Dear all,
I am truly happy connected to this great platform,all your ideas are quit encouraging and are welcome,
My child case is not a focal seizure but each time it occurs she fell down and her body became stev and she jeck say like 2-3mins after which she will fell asleep for like another 10min though our doctor did not specify the type as per say but i think going to the lab is necessary, she has been on tegretol for almost a year now,

Jump to this post

@oyeks
Hello,
The seizures sound like they are generalized tonic-clonic, older terminology was grand mal. if her seizures have not improved in nearly a year I find it odd that the doctor has not either increased her Tegretol or added another medication long before now. Has she been on Tegretol all this time without having her Tegretol blood level checked, if so I would tell the doctor that I wanted a lab slip to get her blood level of Tegretol checked and don’t let them talk you out of it, demand it. Is she seeing a neurologist?

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Thanks all,
Let and that while on tegretol in first time the. Count actually refused to like 2 times in a month and sometimes even up to 5-6 times in a month while she never missed her med twice daily,
Also she doesn't bring out form while convolting that's make her case somehow strenge

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I had a seizure 6 years ago I was 62 years old at the time lasted 20 minutes.They put me on keppra 500mg twicw a day,but every approx. two years I will have a couple 20 minute seizures.Does anyone think taking more keppra will help or should I try something else.This last on yesterday gave me no warning,found myself laying on the floor.Thank you Dave

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@1710dave I imagine a seizure that you didn't know was coming was quite frightening. Often finding a medication that has little to no side effects, or at least ones that you can live with, can be a challenge. Have you reported this to your physician? Hopefully he/she may suggest adjusting the dosage or perhaps prescribe another medication or strategy. In any event, changes to your medication are best done with your physician.

@kennethracey switched medications after consulting with his physician and may have some experiences to share with you.

Dave, were you doing an activity that you normally would not be doing when the seizure came on? The current health crisis has definitely increased the stress level in most folks throughout the world and stress can trigger many things. Have you experienced a radical change in your lifestyle since the CoVID virus came ashore?

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@1710dave

I had a seizure 6 years ago I was 62 years old at the time lasted 20 minutes.They put me on keppra 500mg twicw a day,but every approx. two years I will have a couple 20 minute seizures.Does anyone think taking more keppra will help or should I try something else.This last on yesterday gave me no warning,found myself laying on the floor.Thank you Dave

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Hello @1710dave, I'm sure it was frightening to find yourself laying on the floor! Do you see a neurologist who specializes in seizures? Neurologists can have general practices or more specific practices.

There are neurologists who do specialize in seizures. I would like to invite @jakedduck1 to this discussion. He has had experience (life-long) with seizures and he might be able to shed some light on your situation.

Liked by Leonard

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@melissarepanshek

@1710dave I imagine a seizure that you didn't know was coming was quite frightening. Often finding a medication that has little to no side effects, or at least ones that you can live with, can be a challenge. Have you reported this to your physician? Hopefully he/she may suggest adjusting the dosage or perhaps prescribe another medication or strategy. In any event, changes to your medication are best done with your physician.

@kennethracey switched medications after consulting with his physician and may have some experiences to share with you.

Dave, were you doing an activity that you normally would not be doing when the seizure came on? The current health crisis has definitely increased the stress level in most folks throughout the world and stress can trigger many things. Have you experienced a radical change in your lifestyle since the CoVID virus came ashore?

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I have a lot of stress,in the last ten years I lost both parents and all their brothers and sisters and now my sister,the last one in the family is dying from cancer,she is in hospice and all I can do is talk on the phone to her once a day and my wife has heart problems,i wake every morning afraid to look over at what I might find.

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@1710dave

I have a lot of stress,in the last ten years I lost both parents and all their brothers and sisters and now my sister,the last one in the family is dying from cancer,she is in hospice and all I can do is talk on the phone to her once a day and my wife has heart problems,i wake every morning afraid to look over at what I might find.

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My sincerest condolences on the tragic loss of so many members of your family. I understand your fear with regard to your spouse. My husband has had cardiac issues for the past 17 years and I am always on the "edge of my seat, waiting for the other shoe to drop". That type of stress does take its toll on an individual. The result in my case was the onset of panic attacks.

I am hoping that despite social restrictions you are able to connect with your physician and see if medication should be adjusted or perhaps another option introduced to help you to get through this extremely difficult time in your life. I know Mayo Clinic is offering various appointment options now to work around social distancing. Do you think perhaps your physician might be open to a conference call, Skype or Zoom meeting?

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@melissarepanshek

My sincerest condolences on the tragic loss of so many members of your family. I understand your fear with regard to your spouse. My husband has had cardiac issues for the past 17 years and I am always on the "edge of my seat, waiting for the other shoe to drop". That type of stress does take its toll on an individual. The result in my case was the onset of panic attacks.

I am hoping that despite social restrictions you are able to connect with your physician and see if medication should be adjusted or perhaps another option introduced to help you to get through this extremely difficult time in your life. I know Mayo Clinic is offering various appointment options now to work around social distancing. Do you think perhaps your physician might be open to a conference call, Skype or Zoom meeting?

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@1710dave
Hello Dave,
I too am sorry about the loss of your family Dave. I only have a brother and a sprinkling of cousins left.
I thought your Keppra had been increased. But if not I believe it would be a good idea to discuss an increase with your doctor. Another thing I would ask about is pharmacogenomics where they are able to use your genetic profile to test how effective a particular medication will work and at what dose. They can also determine if you will have side effects. Another thing to ponder is if your seizures could be stress induced. If so the seizure meds will be ineffective. Stress, Anxiety, depression or other psychological issues are a major enemy in someone with Epilepsy.

Most people I know or have talked to take
2-3,000mg a day.
Have you ever got a second opinion or thought about it. Might be a good idea. If your near Rochester, Minnesota, Jacksonville, Fl or Scottsdale, Az, Mayo Clinic would be an excellent place to go.
Best of luck to you Dave,
Jake

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