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Comment from: 19-24 Transgender 2 to less than 5 years Caregiver Published: August 14

i went on this med as an adjunct to lamictal for uncontrolled simple focal epilepsy and controlled(via surgery) grand mal epilepsy, it slightly reduced the focal seizure rate and slightly reduced my hand tremor but caused extreme constipation only alleviatable by stimulant laxatives. i also had very bad dizzyness at higher doses. side effects definately outweigh improvement.

Related Reading: lamictal | seizure | constipation

Comment from: 19-24 Transgender 2 to less than 5 years Caregiver Published: August 14

i went on this med as an adjunct to lamictal for uncontrolled simple focal epilepsy and controlled(via surgery) grand mal epilepsy, it slightly reduced the focal seizure rate and slightly reduced my hand tremor but caused extreme constipation only alleviatable by stimulant laxatives. i also had very bad dizzyness at higher doses. side effects definately outweigh improvement.

Related Reading: lamictal | seizure | constipation

Comment from: nyc1962 25-34 Female Caregiver Published: March 27

Started our adult daughter on ONFI for LGS. In my opinion, there is an interaction between ONFI and Psych medication. It appears that the interaction amplifies many of the ONFI side effects (physical and behavior). Since ONFI was the only new variable in her medication regime what we observed was more than mere coincidence. Please carefully read the FDA listed side effects of the medication. ONFI is the Neurology team’s new and favorite drug. They can’t or won’t acknowledge that the list side effects are from the result of ONFI. Neurology will go out of their way to blame everything else under the sun.

Related Reading: onfi

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Comment from: 19-24 Transgender 2 to less than 5 years Caregiver Published: August 14

i went on this med as an adjunct to lamictal for uncontrolled simple focal epilepsy and controlled(via surgery) grand mal epilepsy, it slightly reduced the focal seizure rate and slightly reduced my hand tremor but caused extreme constipation only alleviatable by stimulant laxatives. i also had very bad dizzyness at higher doses. side effects definately outweigh improvement.

Related Reading: lamictal | seizure | constipation

Comment from: nyc1962 25-34 Female Caregiver Published: March 27

Started our adult daughter on ONFI for LGS. In my opinion, there is an interaction between ONFI and Psych medication. It appears that the interaction amplifies many of the ONFI side effects (physical and behavior). Since ONFI was the only new variable in her medication regime what we observed was more than mere coincidence. Please carefully read the FDA listed side effects of the medication. ONFI is the Neurology team’s new and favorite drug. They can’t or won’t acknowledge that the list side effects are from the result of ONFI. Neurology will go out of their way to blame everything else under the sun.

Related Reading: onfi

Comment from: Grateful 75 or over Female 5 to less than 10 years Patient Published: September 13

Condition diagnosed as "intractable." Had been cleared for surgery. In process of my deciding whether to go ahead, my specialist put me on Onfi (15 mg/day) as adjunct. Two and half years later, no seizures. Changed my life.

Related Reading: onfi

Comment from: 19-24 Transgender 2 to less than 5 years Caregiver Published: August 14

i went on this med as an adjunct to lamictal for uncontrolled simple focal epilepsy and controlled(via surgery) grand mal epilepsy, it slightly reduced the focal seizure rate and slightly reduced my hand tremor but caused extreme constipation only alleviatable by stimulant laxatives. i also had very bad dizzyness at higher doses. side effects definately outweigh improvement.

Related Reading: lamictal | seizure | constipation

Comment from: nyc1962 25-34 Female Caregiver Published: March 27

Started our adult daughter on ONFI for LGS. In my opinion, there is an interaction between ONFI and Psych medication. It appears that the interaction amplifies many of the ONFI side effects (physical and behavior). Since ONFI was the only new variable in her medication regime what we observed was more than mere coincidence. Please carefully read the FDA listed side effects of the medication. ONFI is the Neurology team’s new and favorite drug. They can’t or won’t acknowledge that the list side effects are from the result of ONFI. Neurology will go out of their way to blame everything else under the sun.

Related Reading: onfi

Comment from: Grateful 75 or over Female 5 to less than 10 years Patient Published: September 13

Condition diagnosed as "intractable." Had been cleared for surgery. In process of my deciding whether to go ahead, my specialist put me on Onfi (15 mg/day) as adjunct. Two and half years later, no seizures. Changed my life.

Related Reading: onfi

Comment from: Anonymous 45-54 Male 2 to less than 5 years Patient Published: May 19

Unexpected status epilepticus first seizure in 2009 from head injury in 1995. Bad seizures continued every few months apart. Tried many medications, but only minor relief, but still passed out and lengthy mental confusion for weeks afterward. Currently taking 400mg Vimpat, 400 mg Lamotragine and 30mg Onfi. Have not had any seizures since starting Onfi. However, they started me at 40mg per day. Caused me to fall over asleep constantly. Very dangerous. They have lowered my dose to 30mg a day, but I still find myself falling asleep during the day. I have fallen out of bus seats into aisles many times. So far I have not injured myself, but I also fall asleep standing up and wake up when I start to fall. Unfortunately, my neurologists are working at a specialty clinic for the poor and obviously for some tax or other benefit, as they don't even follow plans supposedly written in my charts. At this point I am having to act as my own doctor which I do not like. They told me that they wanted to lower my lamotragine from 700mg per day to 400mg. I did not have access to my next month's supply of lamotragine but I had extra Onfi. One other regular neurologist suggested that if I ran out of another drug I should raise Onfi back to 40mg until problem was worked out. This was how I lowered my lamotragine dosage and slowly returned to 30mg Onfi. I am frustrated with having to decide between lowering Onfi dosage to not fall down when sitting or standing and getting injured or having a seizure and getting the same injuries or worse. All of my indigent coverage for all medical conditions was canceled because of another pre-existing condition I have, so I have no medical coverage at all. I need a competent neurologist, but I am unemployed and living with my father. I am very frustrated that I have to go by bus to Mexico to buy my other prescriptions. On the bright side, I am thrilled that Onfi stopped my seizures and I can live with the other side effects apart from falling asleep.

Related Reading: seizure | head injury | vimpat

SLIDESHOW

What Is Epilepsy? Symptoms, Causes, and Treatments See Slideshow
Comment from: 19-24 Transgender 2 to less than 5 years Caregiver Published: August 14

i went on this med as an adjunct to lamictal for uncontrolled simple focal epilepsy and controlled(via surgery) grand mal epilepsy, it slightly reduced the focal seizure rate and slightly reduced my hand tremor but caused extreme constipation only alleviatable by stimulant laxatives. i also had very bad dizzyness at higher doses. side effects definately outweigh improvement.

Related Reading: lamictal | seizure | constipation

Comment from: nyc1962 25-34 Female Caregiver Published: March 27

Started our adult daughter on ONFI for LGS. In my opinion, there is an interaction between ONFI and Psych medication. It appears that the interaction amplifies many of the ONFI side effects (physical and behavior). Since ONFI was the only new variable in her medication regime what we observed was more than mere coincidence. Please carefully read the FDA listed side effects of the medication. ONFI is the Neurology team’s new and favorite drug. They can’t or won’t acknowledge that the list side effects are from the result of ONFI. Neurology will go out of their way to blame everything else under the sun.

Related Reading: onfi

Comment from: Grateful 75 or over Female 5 to less than 10 years Patient Published: September 13

Condition diagnosed as "intractable." Had been cleared for surgery. In process of my deciding whether to go ahead, my specialist put me on Onfi (15 mg/day) as adjunct. Two and half years later, no seizures. Changed my life.

Related Reading: onfi

Comment from: Anonymous 45-54 Male 2 to less than 5 years Patient Published: May 19

Unexpected status epilepticus first seizure in 2009 from head injury in 1995. Bad seizures continued every few months apart. Tried many medications, but only minor relief, but still passed out and lengthy mental confusion for weeks afterward. Currently taking 400mg Vimpat, 400 mg Lamotragine and 30mg Onfi. Have not had any seizures since starting Onfi. However, they started me at 40mg per day. Caused me to fall over asleep constantly. Very dangerous. They have lowered my dose to 30mg a day, but I still find myself falling asleep during the day. I have fallen out of bus seats into aisles many times. So far I have not injured myself, but I also fall asleep standing up and wake up when I start to fall. Unfortunately, my neurologists are working at a specialty clinic for the poor and obviously for some tax or other benefit, as they don't even follow plans supposedly written in my charts. At this point I am having to act as my own doctor which I do not like. They told me that they wanted to lower my lamotragine from 700mg per day to 400mg. I did not have access to my next month's supply of lamotragine but I had extra Onfi. One other regular neurologist suggested that if I ran out of another drug I should raise Onfi back to 40mg until problem was worked out. This was how I lowered my lamotragine dosage and slowly returned to 30mg Onfi. I am frustrated with having to decide between lowering Onfi dosage to not fall down when sitting or standing and getting injured or having a seizure and getting the same injuries or worse. All of my indigent coverage for all medical conditions was canceled because of another pre-existing condition I have, so I have no medical coverage at all. I need a competent neurologist, but I am unemployed and living with my father. I am very frustrated that I have to go by bus to Mexico to buy my other prescriptions. On the bright side, I am thrilled that Onfi stopped my seizures and I can live with the other side effects apart from falling asleep.

Related Reading: seizure | head injury | vimpat

Comment from: 19-24 Female 2 to less than 5 years Patient Published: May 05

I've been taking 10mg twice daily for two years, along with 600mg of Lamotrigine, and since I have started the medication, I have been seizure free.

Related Reading: seizure

Comment from: 19-24 Transgender 2 to less than 5 years Caregiver Published: August 14

i went on this med as an adjunct to lamictal for uncontrolled simple focal epilepsy and controlled(via surgery) grand mal epilepsy, it slightly reduced the focal seizure rate and slightly reduced my hand tremor but caused extreme constipation only alleviatable by stimulant laxatives. i also had very bad dizzyness at higher doses. side effects definately outweigh improvement.

Related Reading: lamictal | seizure | constipation

Comment from: nyc1962 25-34 Female Caregiver Published: March 27

Started our adult daughter on ONFI for LGS. In my opinion, there is an interaction between ONFI and Psych medication. It appears that the interaction amplifies many of the ONFI side effects (physical and behavior). Since ONFI was the only new variable in her medication regime what we observed was more than mere coincidence. Please carefully read the FDA listed side effects of the medication. ONFI is the Neurology team’s new and favorite drug. They can’t or won’t acknowledge that the list side effects are from the result of ONFI. Neurology will go out of their way to blame everything else under the sun.

Related Reading: onfi

Comment from: Grateful 75 or over Female 5 to less than 10 years Patient Published: September 13

Condition diagnosed as "intractable." Had been cleared for surgery. In process of my deciding whether to go ahead, my specialist put me on Onfi (15 mg/day) as adjunct. Two and half years later, no seizures. Changed my life.

Related Reading: onfi

Comment from: Anonymous 45-54 Male 2 to less than 5 years Patient Published: May 19

Unexpected status epilepticus first seizure in 2009 from head injury in 1995. Bad seizures continued every few months apart. Tried many medications, but only minor relief, but still passed out and lengthy mental confusion for weeks afterward. Currently taking 400mg Vimpat, 400 mg Lamotragine and 30mg Onfi. Have not had any seizures since starting Onfi. However, they started me at 40mg per day. Caused me to fall over asleep constantly. Very dangerous. They have lowered my dose to 30mg a day, but I still find myself falling asleep during the day. I have fallen out of bus seats into aisles many times. So far I have not injured myself, but I also fall asleep standing up and wake up when I start to fall. Unfortunately, my neurologists are working at a specialty clinic for the poor and obviously for some tax or other benefit, as they don't even follow plans supposedly written in my charts. At this point I am having to act as my own doctor which I do not like. They told me that they wanted to lower my lamotragine from 700mg per day to 400mg. I did not have access to my next month's supply of lamotragine but I had extra Onfi. One other regular neurologist suggested that if I ran out of another drug I should raise Onfi back to 40mg until problem was worked out. This was how I lowered my lamotragine dosage and slowly returned to 30mg Onfi. I am frustrated with having to decide between lowering Onfi dosage to not fall down when sitting or standing and getting injured or having a seizure and getting the same injuries or worse. All of my indigent coverage for all medical conditions was canceled because of another pre-existing condition I have, so I have no medical coverage at all. I need a competent neurologist, but I am unemployed and living with my father. I am very frustrated that I have to go by bus to Mexico to buy my other prescriptions. On the bright side, I am thrilled that Onfi stopped my seizures and I can live with the other side effects apart from falling asleep.

Related Reading: seizure | head injury | vimpat

Comment from: 19-24 Female 2 to less than 5 years Patient Published: May 05

I've been taking 10mg twice daily for two years, along with 600mg of Lamotrigine, and since I have started the medication, I have been seizure free.

Related Reading: seizure

Comment from: Jchapman6689 19-24 Male 6 months to less than 1 year Patient Published: February 23

I take 15mg in the morning and 20mg in the evening. I also take 8 Rufinimide pills a day but is not enough to stop my seizures. Since starting onfi I went from having 2-3 gran maul seizures a day to none for six months now. Very effective and minimal side effects. Hopefully I can start taking less Rufinimide pills a day and the Onfi will keep me seizure free alone, which I think it can.

Related Reading: onfi | seizure

QUESTION

If you have had a seizure, it means you have epilepsy. See Answer
Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: valikgrl08 25-34 Female less than 1 month Patient Published: October 18

my son has seizures and this medicine with his Topamax has helped tremendously and calmed him and his seizures

Related Reading: topamax

Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: valikgrl08 25-34 Female less than 1 month Patient Published: October 18

my son has seizures and this medicine with his Topamax has helped tremendously and calmed him and his seizures

Related Reading: topamax

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: October 06

The doctor had me start 1/2 a pill twice a day then upped me to 15 MG a day a 5 of the 9 days were seizure free(very rare) I then went upto 10MG pills twice a day. After 8 days I was extremely constipated. I was lowered back to 15MG a day but have yet to have another seizure free day. All bowel movementa during to 2 pills a day took peri-colace and/or prune juice.

Related Reading: seizure

Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: valikgrl08 25-34 Female less than 1 month Patient Published: October 18

my son has seizures and this medicine with his Topamax has helped tremendously and calmed him and his seizures

Related Reading: topamax

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: October 06

The doctor had me start 1/2 a pill twice a day then upped me to 15 MG a day a 5 of the 9 days were seizure free(very rare) I then went upto 10MG pills twice a day. After 8 days I was extremely constipated. I was lowered back to 15MG a day but have yet to have another seizure free day. All bowel movementa during to 2 pills a day took peri-colace and/or prune juice.

Related Reading: seizure

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: September 28

The doctor at first had me on half a pill twice a day for a week then 1 pill in am and have at night. I was then increasesd to 10 mg pills twice a day, brought on 1 dropp attack and 3 complex partials in the next two days. It made me VERY constipated so was decreased to 15mg a day. still constipated but not as bad and seizures are down to 0-6 a day. I take 1 table spoon of olive oil everyother day and prune juice every other day

IMAGES

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Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: valikgrl08 25-34 Female less than 1 month Patient Published: October 18

my son has seizures and this medicine with his Topamax has helped tremendously and calmed him and his seizures

Related Reading: topamax

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: October 06

The doctor had me start 1/2 a pill twice a day then upped me to 15 MG a day a 5 of the 9 days were seizure free(very rare) I then went upto 10MG pills twice a day. After 8 days I was extremely constipated. I was lowered back to 15MG a day but have yet to have another seizure free day. All bowel movementa during to 2 pills a day took peri-colace and/or prune juice.

Related Reading: seizure

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: September 28

The doctor at first had me on half a pill twice a day for a week then 1 pill in am and have at night. I was then increasesd to 10 mg pills twice a day, brought on 1 dropp attack and 3 complex partials in the next two days. It made me VERY constipated so was decreased to 15mg a day. still constipated but not as bad and seizures are down to 0-6 a day. I take 1 table spoon of olive oil everyother day and prune juice every other day

Comment from: Ihavequestions 19-24 Female 6 months to less than 1 year Caregiver Published: August 06

I provide support for a young woman that started having seizures when she was an hour old. Her parents have tried EVERYTHING imaginable to control her seizures and were mostly unsuccessful. Upon trying Onfi we noticed a significant decrease in seizure activity. This was along with many other seizure medications she was taking at the time. But she ended up going a remarkable 10 month period completely seizure free. All of a sudden this sweet, funny, happy going, mischievous young lady began to shine through. Very recently she began to have seizures again. She is having more than she used to before she started the Onfi, and they seem to be affecting her differently. Also, the PRN that she was getting before if she had so many in an 8 hour period is no longer working the way it used to. I was just wondering if anyone has any more information on this drug and if it's effectiveness wears off like this after a while?? Also, how are the effects of getting off a medication like this?? I read all of these testimonials about what the first week-6 months is like. Where is the long term information!? Anything will help, thank you for your time.

Related Reading: onfi | seizure | seizure medications

Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: valikgrl08 25-34 Female less than 1 month Patient Published: October 18

my son has seizures and this medicine with his Topamax has helped tremendously and calmed him and his seizures

Related Reading: topamax

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: October 06

The doctor had me start 1/2 a pill twice a day then upped me to 15 MG a day a 5 of the 9 days were seizure free(very rare) I then went upto 10MG pills twice a day. After 8 days I was extremely constipated. I was lowered back to 15MG a day but have yet to have another seizure free day. All bowel movementa during to 2 pills a day took peri-colace and/or prune juice.

Related Reading: seizure

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: September 28

The doctor at first had me on half a pill twice a day for a week then 1 pill in am and have at night. I was then increasesd to 10 mg pills twice a day, brought on 1 dropp attack and 3 complex partials in the next two days. It made me VERY constipated so was decreased to 15mg a day. still constipated but not as bad and seizures are down to 0-6 a day. I take 1 table spoon of olive oil everyother day and prune juice every other day

Comment from: Ihavequestions 19-24 Female 6 months to less than 1 year Caregiver Published: August 06

I provide support for a young woman that started having seizures when she was an hour old. Her parents have tried EVERYTHING imaginable to control her seizures and were mostly unsuccessful. Upon trying Onfi we noticed a significant decrease in seizure activity. This was along with many other seizure medications she was taking at the time. But she ended up going a remarkable 10 month period completely seizure free. All of a sudden this sweet, funny, happy going, mischievous young lady began to shine through. Very recently she began to have seizures again. She is having more than she used to before she started the Onfi, and they seem to be affecting her differently. Also, the PRN that she was getting before if she had so many in an 8 hour period is no longer working the way it used to. I was just wondering if anyone has any more information on this drug and if it's effectiveness wears off like this after a while?? Also, how are the effects of getting off a medication like this?? I read all of these testimonials about what the first week-6 months is like. Where is the long term information!? Anything will help, thank you for your time.

Related Reading: onfi | seizure | seizure medications

Comment from: FemaleMensan 45-54 Female 1 to less than 2 years Patient Published: February 17

This is the first medication I had, on over 30 years, that controlled my seizures. I've been without a seizure for the past 16 months! In my past, the longest I was without seizures was 6 months. (My worry is if ONFI has any negative effect on my body. {I also worry that I taking Onfi is why I have problems sleeping!})

Related Reading: seizure | onfi

Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: valikgrl08 25-34 Female less than 1 month Patient Published: October 18

my son has seizures and this medicine with his Topamax has helped tremendously and calmed him and his seizures

Related Reading: topamax

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: October 06

The doctor had me start 1/2 a pill twice a day then upped me to 15 MG a day a 5 of the 9 days were seizure free(very rare) I then went upto 10MG pills twice a day. After 8 days I was extremely constipated. I was lowered back to 15MG a day but have yet to have another seizure free day. All bowel movementa during to 2 pills a day took peri-colace and/or prune juice.

Related Reading: seizure

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: September 28

The doctor at first had me on half a pill twice a day for a week then 1 pill in am and have at night. I was then increasesd to 10 mg pills twice a day, brought on 1 dropp attack and 3 complex partials in the next two days. It made me VERY constipated so was decreased to 15mg a day. still constipated but not as bad and seizures are down to 0-6 a day. I take 1 table spoon of olive oil everyother day and prune juice every other day

Comment from: Ihavequestions 19-24 Female 6 months to less than 1 year Caregiver Published: August 06

I provide support for a young woman that started having seizures when she was an hour old. Her parents have tried EVERYTHING imaginable to control her seizures and were mostly unsuccessful. Upon trying Onfi we noticed a significant decrease in seizure activity. This was along with many other seizure medications she was taking at the time. But she ended up going a remarkable 10 month period completely seizure free. All of a sudden this sweet, funny, happy going, mischievous young lady began to shine through. Very recently she began to have seizures again. She is having more than she used to before she started the Onfi, and they seem to be affecting her differently. Also, the PRN that she was getting before if she had so many in an 8 hour period is no longer working the way it used to. I was just wondering if anyone has any more information on this drug and if it's effectiveness wears off like this after a while?? Also, how are the effects of getting off a medication like this?? I read all of these testimonials about what the first week-6 months is like. Where is the long term information!? Anything will help, thank you for your time.

Related Reading: onfi | seizure | seizure medications

Comment from: FemaleMensan 45-54 Female 1 to less than 2 years Patient Published: February 17

This is the first medication I had, on over 30 years, that controlled my seizures. I've been without a seizure for the past 16 months! In my past, the longest I was without seizures was 6 months. (My worry is if ONFI has any negative effect on my body. {I also worry that I taking Onfi is why I have problems sleeping!})

Related Reading: seizure | onfi

Comment from: 19-24 Male 1 to 6 months Patient Published: February 08

My 24 year old son takes 40mg of this drug and has really helped with his seizures. He also takes 600mg of vimpat with this drug. We hadn't been able to get him to go a week without seizures now he has been two months seizure free.

Related Reading: vimpat | seizure

Comment from: Sad Mom 45-54 Female 6 months to less than 1 year Patient Published: August 17

My Daughter was on this medication for 6 months, She began to vomit and to this day she has continued to vomit and it's been 2 Years. Any advice

Comment from: valikgrl08 25-34 Female less than 1 month Patient Published: October 18

my son has seizures and this medicine with his Topamax has helped tremendously and calmed him and his seizures

Related Reading: topamax

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: October 06

The doctor had me start 1/2 a pill twice a day then upped me to 15 MG a day a 5 of the 9 days were seizure free(very rare) I then went upto 10MG pills twice a day. After 8 days I was extremely constipated. I was lowered back to 15MG a day but have yet to have another seizure free day. All bowel movementa during to 2 pills a day took peri-colace and/or prune juice.

Related Reading: seizure

Comment from: dhaniboi 35-44 Male less than 1 month Patient Published: September 28

The doctor at first had me on half a pill twice a day for a week then 1 pill in am and have at night. I was then increasesd to 10 mg pills twice a day, brought on 1 dropp attack and 3 complex partials in the next two days. It made me VERY constipated so was decreased to 15mg a day. still constipated but not as bad and seizures are down to 0-6 a day. I take 1 table spoon of olive oil everyother day and prune juice every other day

Comment from: Ihavequestions 19-24 Female 6 months to less than 1 year Caregiver Published: August 06

I provide support for a young woman that started having seizures when she was an hour old. Her parents have tried EVERYTHING imaginable to control her seizures and were mostly unsuccessful. Upon trying Onfi we noticed a significant decrease in seizure activity. This was along with many other seizure medications she was taking at the time. But she ended up going a remarkable 10 month period completely seizure free. All of a sudden this sweet, funny, happy going, mischievous young lady began to shine through. Very recently she began to have seizures again. She is having more than she used to before she started the Onfi, and they seem to be affecting her differently. Also, the PRN that she was getting before if she had so many in an 8 hour period is no longer working the way it used to. I was just wondering if anyone has any more information on this drug and if it's effectiveness wears off like this after a while?? Also, how are the effects of getting off a medication like this?? I read all of these testimonials about what the first week-6 months is like. Where is the long term information!? Anything will help, thank you for your time.

Related Reading: onfi | seizure | seizure medications

Comment from: FemaleMensan 45-54 Female 1 to less than 2 years Patient Published: February 17

This is the first medication I had, on over 30 years, that controlled my seizures. I've been without a seizure for the past 16 months! In my past, the longest I was without seizures was 6 months. (My worry is if ONFI has any negative effect on my body. {I also worry that I taking Onfi is why I have problems sleeping!})

Related Reading: seizure | onfi

Comment from: 19-24 Male 1 to 6 months Patient Published: February 08

My 24 year old son takes 40mg of this drug and has really helped with his seizures. He also takes 600mg of vimpat with this drug. We hadn't been able to get him to go a week without seizures now he has been two months seizure free.

Related Reading: vimpat | seizure

Comment from: Female Caregiver Published: December 30

My 12 yr old son who was diagnosed with Lenox-Gaustout at 7 yrs old was just put on this med last month in addition to Keppra, Vimpat and Depakote. Before starting Onfi is was normal for him to have anywhere betweeen 5 and 15 drop attacks daily. We had accepted that daily drop seizures would be a part of his life. After Onfi he has not had one single seizure. His main diagnosis is Cerebral Palsy so he already has a lifetime of delays but the constant seizures had him regressing and his quality of life was not what it was before Lenox. I truly believe this is a miracle drug.. He is so different without the daily affects of seizures, and the we see the independence he once strived to have slowly returning..zero seizures daily!!!!

Related Reading: keppra | vimpat | depakote

Comment from: Jmom 25-34 Male 6 months to less than 1 year Caregiver Published: November 04

31 year old son has had uncontrolled multiple monthly nocturnal grand mal seizures since 8 months old. Onfi an add on to Keppra and Zonegran. We are only having 1 seizure every few months. He seems to be experiencing the weight gain side effect. Has gained 20 pounds - but he was only 110 at 5'8'' - so it is currently seen as a benefit. 10 mg at night - after 30 years of every drug - we are ever so hopeful that ONFI might finally be the one.

Related Reading: onfi | keppra | zonegran

Comment from: Jmom 25-34 Male 6 months to less than 1 year Caregiver Published: November 04

31 year old son has had uncontrolled multiple monthly nocturnal grand mal seizures since 8 months old. Onfi an add on to Keppra and Zonegran. We are only having 1 seizure every few months. He seems to be experiencing the weight gain side effect. Has gained 20 pounds - but he was only 110 at 5'8'' - so it is currently seen as a benefit. 10 mg at night - after 30 years of every drug - we are ever so hopeful that ONFI might finally be the one.

Related Reading: onfi | keppra | zonegran

Comment from: Nora 35-44 Female 6 months to less than 1 year Patient Published: February 04

During a 4 day period I had 3-4 tonic clonic seizures a night and many seizures during the day while taking the highest dose of keppra. My doctor started me on this I slept for 4 days and I started feeling better. Now with topamax and vimapat I am much better, great med, side effects went away.

Related Reading: keppra | topamax

Comment from: Jmom 25-34 Male 6 months to less than 1 year Caregiver Published: November 04

31 year old son has had uncontrolled multiple monthly nocturnal grand mal seizures since 8 months old. Onfi an add on to Keppra and Zonegran. We are only having 1 seizure every few months. He seems to be experiencing the weight gain side effect. Has gained 20 pounds - but he was only 110 at 5'8'' - so it is currently seen as a benefit. 10 mg at night - after 30 years of every drug - we are ever so hopeful that ONFI might finally be the one.

Related Reading: onfi | keppra | zonegran

Comment from: Nora 35-44 Female 6 months to less than 1 year Patient Published: February 04

During a 4 day period I had 3-4 tonic clonic seizures a night and many seizures during the day while taking the highest dose of keppra. My doctor started me on this I slept for 4 days and I started feeling better. Now with topamax and vimapat I am much better, great med, side effects went away.

Related Reading: keppra | topamax

Comment from: 25-34 Female less than 1 month Patient Published: December 18

I just started this medication a week and a half ago for juvenile myoclonic epilepsy. Its an adjunct to Lyrica and Vimpat. I am SO tired! This med makes me very sleepy and I am only at 10mg. I have to increase in the next few weeks to 20mg. I'm hoping the side effects go away, because the only true complaint I have is that I feel like I can't function.

Related Reading: lyrica | vimpat

Comment from: Jmom 25-34 Male 6 months to less than 1 year Caregiver Published: November 04

31 year old son has had uncontrolled multiple monthly nocturnal grand mal seizures since 8 months old. Onfi an add on to Keppra and Zonegran. We are only having 1 seizure every few months. He seems to be experiencing the weight gain side effect. Has gained 20 pounds - but he was only 110 at 5'8'' - so it is currently seen as a benefit. 10 mg at night - after 30 years of every drug - we are ever so hopeful that ONFI might finally be the one.

Related Reading: onfi | keppra | zonegran

Comment from: Nora 35-44 Female 6 months to less than 1 year Patient Published: February 04

During a 4 day period I had 3-4 tonic clonic seizures a night and many seizures during the day while taking the highest dose of keppra. My doctor started me on this I slept for 4 days and I started feeling better. Now with topamax and vimapat I am much better, great med, side effects went away.

Related Reading: keppra | topamax

Comment from: 25-34 Female less than 1 month Patient Published: December 18

I just started this medication a week and a half ago for juvenile myoclonic epilepsy. Its an adjunct to Lyrica and Vimpat. I am SO tired! This med makes me very sleepy and I am only at 10mg. I have to increase in the next few weeks to 20mg. I'm hoping the side effects go away, because the only true complaint I have is that I feel like I can't function.

Related Reading: lyrica | vimpat

Comment from: artguinea 25-34 Female 6 months to less than 1 year Patient Published: July 10

I have now been on the medication for 6 months. I was having several complex-partials and at least one grand mal every month. I am no longer having grand mals, and my cp's are slowing down. I have tried SO many of the drugs, and this is the one that has really finally kicked in and helped!!

Comment from: Jmom 25-34 Male 6 months to less than 1 year Caregiver Published: November 04

31 year old son has had uncontrolled multiple monthly nocturnal grand mal seizures since 8 months old. Onfi an add on to Keppra and Zonegran. We are only having 1 seizure every few months. He seems to be experiencing the weight gain side effect. Has gained 20 pounds - but he was only 110 at 5'8'' - so it is currently seen as a benefit. 10 mg at night - after 30 years of every drug - we are ever so hopeful that ONFI might finally be the one.

Related Reading: onfi | keppra | zonegran

Comment from: Nora 35-44 Female 6 months to less than 1 year Patient Published: February 04

During a 4 day period I had 3-4 tonic clonic seizures a night and many seizures during the day while taking the highest dose of keppra. My doctor started me on this I slept for 4 days and I started feeling better. Now with topamax and vimapat I am much better, great med, side effects went away.

Related Reading: keppra | topamax

Comment from: 25-34 Female less than 1 month Patient Published: December 18

I just started this medication a week and a half ago for juvenile myoclonic epilepsy. Its an adjunct to Lyrica and Vimpat. I am SO tired! This med makes me very sleepy and I am only at 10mg. I have to increase in the next few weeks to 20mg. I'm hoping the side effects go away, because the only true complaint I have is that I feel like I can't function.

Related Reading: lyrica | vimpat

Comment from: artguinea 25-34 Female 6 months to less than 1 year Patient Published: July 10

I have now been on the medication for 6 months. I was having several complex-partials and at least one grand mal every month. I am no longer having grand mals, and my cp's are slowing down. I have tried SO many of the drugs, and this is the one that has really finally kicked in and helped!!

Comment from: turtle 13-18 Male less than 1 month Caregiver Published: May 23

Hve been on this medication for 4 weeks. This medication is very effective against drop attacks. My son (Lennox-Gastaut syndrome) went from 10-15 drop attacks a day to none or 1-2 drop attacks on a bad day. He still has other types of seizure with this medication but looks like it slow down. He does experience irritation outburst due to tireness when on this medication for the first 3 weeks but the side efects gradually get better. Considering he had grand- mal seizures on a 2-week basis to no grand-mal seizures after 4 weeks on this medication, it's a wonder drug for us. However, yesterday he has an episode (crying frantically, head shaken, muscle cramping, temperature) which seems like he may have a grand-mal seizure coming so I give him his medications right away (he uses Trileptal, Keppra & Zonizamide together with Onfi), but he still crying so I put wet cold towels on his neck and when his neck get cool (the temperature ease out) then he's back to normal. I never can abort a grand-mal seizure before so I still like this medication.

Related Reading: seizure | trileptal | keppra

References
Medical Editor: John P. Cunha, DO, FACOEP

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