For my daughter

[Sully2]

Hi. I’m new here, for my young adult daughter. She was diagnosed with focal aware seizures (simple partial seizures) about a year ago. In hindsight, she’d had several before this in a couple years time. They went from one a couple of times a year, to a couple of times a month (we weren’t sure if they were seizures at that time) Saw a neurologist then and it was confirmed through EEG. When she has them now, they can be anywhere from one a day for a couple of days to several in a day. The symptoms have always stayed the same with those seizures. This week she had her first tonic clonic (grand mal) Has anyone here had the same thing happen? Not only escalating in frequency, but also escalating in severity?

 

[Bernard]

Hi Sully2, welcome to CWE.

My wife has had epilepsy for over 40 years now. Her seizure activity has changed many, many times (type, frequency, severity) over the years - almost always in response (or reaction) to different treatments.

 

[suebear]

Welcome to CWE, have had seizures since the age of 1. Began having gran mal seizures then they changed into complex partial for the longest period of time. Sometimes those complex partials could be so difficult I would loose bladder with them or I would become nauseated with them over the years. That lasted for at least 10 to 15 years, just a guess with number. I can say this, I have been on so many different types of medication it began to get very frustrating over the years as I started to think my life was an unsolved mystery. What I can remember is the number count from my 2nd to last epilepsy specialist to made a medication switch in November 2022 saying to me this is #32. That number has stuck in my head like glue for some reason. Unsure why but the good thing is, the medication is working.

With the low doses of medication and the few surgeries that I have had seizures have changed. I'm willing to live with that and take things one day at a time. As of August I will begin the brand name Topomax as I look forward to going back to something that worked well.

 

[Sully2]

Hi Sully2, welcome to CWE.

My wife has had epilepsy for over 40 years now. Her seizure activity has changed many, many times (type, frequency, severity) over the years - almost always in response (or reaction) to different treatments.

Thank you sir!

 

[Sully2]

Welcome to CWE, have had seizures since the age of 1. Began having gran mal seizures then they changed into complex partial for the longest period of time. Sometimes those complex partials could be so difficult I would loose bladder with them or I would become nauseated with them over the years. That lasted for at least 10 to 15 years, just a guess with number. I can say this, I have been on so many different types of medication it began to get very frustrating over the years as I started to think my life was an unsolved mystery. What I can remember is the number count from my 2nd to last epilepsy specialist to made a medication switch in November 2022 saying to me this is #32. That number has stuck in my head like glue for some reason. Unsure why but the good thing is, the medication is working.

With the low doses of medication and the few surgeries that I have had seizures have changed. I'm willing to live with that and take things one day at a time. As of August I will begin the brand name Topomax as I look forward to going back to something that worked well.

Thank you ma’am!

 

[valeriedl]

Welcome to CWE Sully2.

I've had epilepsy for over 20 years and the frequency of my seizures changes through the months. I some months I might have one seizure and others I might have five or more. They could be spread out over the month or they could happen close together. I have all types of seizures. Over the last few years I've began having them in my sleep, I usually didn't have this happen.

 

[Dani1960]

Hello sully2. Do you know about kindling? Once a brain has a seizure it can " learn" to have another and another... When I learned about this back in 2015 I tried to become more vigilant about any emotional distress and other seizure precipitants..I have been seizure free since recovering from a craniotomy in May 2014. I had access left temporal lobe from bacterial meningitis of my brain. I nearly died. Today my eeg results show a breach rhythm. Not normal due to the defect in.my skull. I have titanium plate and screws in my left temporal lobe region. The rhythm is non epileptic. I have been told my brain healed. However I remain on lamotrigine for the rest of my life. Or another AED to replace it in the future. There is an algorithm predicting increasing seizure risk over 10 years when an AED is completely withdrawn..At this time I have no cognitive changes. I keep learning all I can to continue the neuroplasticity that began after the surgery. This is a great forum. Supportive people.

 

[Porkette]

Hi Sully2,
Welcome to CWE! I've had seizures for 52 yrs. I started out having absence seizures and then a couple of yrs. later
I began having complex partial seizures also. I went to a Epileptologist who is a Dr. that specializes in epilepsy and
he found out I was drug resistant and that I would have seizures when my hormones were changing every month
and he also found out I was having seasonal seizures which are seizures that happen more frequently at certain times
of the yr. do to the lace of serotonin. I have more seizures in the fall and winter compared to the spring and summer.
Be sure to cut back on the carbs and starch foods with your daughter because that can change into sugar and in turn
lead to seizures. Also keep her away from anything with NutraSweet in it like diet soda. You may want to look into
the ketogenic diet for your daughter to help reduce the seizures. I had surgery done to reduce my seizures and my
Dr. put me on the medical marijuana since I'm drug resistant and that has really helped me a lot.
Here's wishing you and your daughter only the best of luck and May God Bless the Both of You!

Sue

 

[Sabbo]

Hello, sully2. I understand exactly what you are saying. I often complained of having "weird feelings" in my head since childhood--nobody could figure out what was happening. Then, at the age of 14, I suddenly had 3 or 4 grand mal seizures (none since). The feelings were finally diagnosed as simple partial seizures when one occurred during an EEG. I now have both simple partial seizures & complex partial seizures, which began about 24 years ago.

I have tried EVERY AED out there. Those that I wasn't allergic to would work for a while, then my brain "seems to become immune" to their effect. I currently take 500mg Zonisamide & 250 mg Xcopri daily. I've still had breakthroughs, but FAR less than when I was on 500mg Zonisamide & 400mg Topiramate daily. At that time, I averaged 1-3 breakthrough complex partials/month.

 

[Sully2]

Welcome to CWE Sully2.

I've had epilepsy for over 20 years and the frequency of my seizures changes through the months. I some months I might have one seizure and others I might have five or more. They could be spread out over the month or they could happen close together. I have all types of seizures. Over the last few years I've began having them in my sleep, I usually didn't have this happen.

Thank you for sharing!

 

[Sully2]

Hello sully2. Do you know about kindling? Once a brain has a seizure it can " learn" to have another and another... When I learned about this back in 2015 I tried to become more vigilant about any emotional distress and other seizure precipitants..I have been seizure free since recovering from a craniotomy in May 2014. I had access left temporal lobe from bacterial meningitis of my brain. I nearly died. Today my eeg results show a breach rhythm. Not normal due to the defect in.my skull. I have titanium plate and screws in my left temporal lobe region. The rhythm is non epileptic. I have been told my brain healed. However I remain on lamotrigine for the rest of my life. Or another AED to replace it in the future. There is an algorithm predicting increasing seizure risk over 10 years when an AED is completely withdrawn..At this time I have no cognitive changes. I keep learning all I can to continue the neuroplasticity that began after the surgery. This is a great forum. Supportive people.

Thank you for sharing!

 

[Sully2]

Hi Sully2,
Welcome to CWE! I've had seizures for 52 yrs. I started out having absence seizures and then a couple of yrs. later
I began having complex partial seizures also. I went to a Epileptologist who is a Dr. that specializes in epilepsy and
he found out I was drug resistant and that I would have seizures when my hormones were changing every month
and he also found out I was having seasonal seizures which are seizures that happen more frequently at certain times
of the yr. do to the lace of serotonin. I have more seizures in the fall and winter compared to the spring and summer.
Be sure to cut back on the carbs and starch foods with your daughter because that can change into sugar and in turn
lead to seizures. Also keep her away from anything with NutraSweet in it like diet soda. You may want to look into
the ketogenic diet for your daughter to help reduce the seizures. I had surgery done to reduce my seizures and my
Dr. put me on the medical marijuana since I'm drug resistant and that has really helped me a lot.
Here's wishing you and your daughter only the best of luck and May God Bless the Both of You!

Sue

Thank you Sue!

 

[Sully2]

Hello, sully2. I understand exactly what you are saying. I often complained of having "weird feelings" in my head since childhood--nobody could figure out what was happening. Then, at the age of 14, I suddenly had 3 or 4 grand mal seizures (none since). The feelings were finally diagnosed as simple partial seizures when one occurred during an EEG. I now have both simple partial seizures & complex partial seizures, which began about 24 years ago.

I have tried EVERY AED out there. Those that I wasn't allergic to would work for a while, then my brain "seems to become immune" to their effect. I currently take 500mg Zonisamide & 250 mg Xcopri daily. I've still had breakthroughs, but FAR less than when I was on 500mg Zonisamide & 400mg Topiramate daily. At that time, I averaged 1-3 breakthrough complex partials/month.

Thank you for sharing!