Two different diagnosis's

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Hi everyone! I'm brand new to the forum and I'm thrilled that we have a safe place where we can all vent and support each other =) I'm also wondering whether anyone has gone through the same experience as mine listed below;

When I was first diagnosed with epilepsy six years ago, my test results showed TLE, which matched up with my simple and complex partial seizures. After three years of trialling different medications with no luck I began to experience tonic clonic seizures. Another EEG done at the hospital came up with Primary Generalised Epilepsy, and I've been confused ever since (no neurologist can explain it to me). I thought that TLE only developed into Secondary Generalised Epilepsy. Does anyone else know whether the same can be said for Primary Generalised, or if it's possible to have both at the same time?

Thanks in advance!
 
Can Epilepsy Change?????

Nutterzxox,
A person's E can change in an unlimited number of different ways!
Every person's case is different and the number of ways it could possibly change is as large as the number of connections between cells in the brain. Then try and figure out how many different possible combinations all those connections could make, or how many different ways an interruption could form in those connections. Those interruptions are what cause E, just like when lightning hits an electrical system. The connections are damaged and the brain is unable to send messages through those broken connections.
This means that there is no set way that any type of E can change. If you think about it, 'Does anybody know for sure how their health is going to change?'. No. That is because of all of the different possibilities of how the health can change! :twocents:

ACsHuman
 
Like finger prints Millians different cells.
Mine changed over years and memory fried.You think nurologist explain it to you better than that acshuman did in few lines...your nuro studied subject for long enough..
Mine is was temp lobe but had other problems resulting in expansion but that don't mean same will happen to you.In my case certain amount of bad luck.
I don't understand it as much as others I not that clever or can I retain info but that me
 
Years ago, my seizures started out as Cps. They progressed into TCs in about 8 months. I had my first TC seizure while in the shower and suffered severe burns. While in the hospital, I had numerous tests done, and was finally diagnosed with TLE. It starts in my left temporal lobe as a complex partial seizure and may OR may not progress as a secondary tonic clonic seizures. So yes, it IS possible to have BOTH.

Seizures are generally described in two major groups of seizures, primary generalized seizures and partial seizures.
The difference between the types of seizures is in how and where they begin.

Check here for more info:

http://www.epilepsy.com/learn/types-seizures/secondarily-generalized-seizures
 
Hi Nutterzxox,

Does the EEG report say what kind of generalized seizures were seen?

My daughter's initial episodes were mostly TLE like - bad smells, bad tastes, abdominal pain, staring (30secs to minutes) with hits to memory after, etc... No lesions on MRI. Due to the staring they initially looked for absence, this is before talking to a neurologist and before the non staring events had ramped up, first eeg was clear. Months later a sleep deprived eeg showed focal related discharges but they didn't see a seizure. Still episodes reduced on medication specific for partials. They never completely stopped so got a veeg setup (3 years after starting this process) where they took her off meds. The month before the vEEG, the frequency changed from once a week to less, now once a month. So they didn't catch any partials we were hoping for. They did catch myoclonic (think negative) and atypical absence - all generalized activity that wasn't there years ago. The generalized activity was becoming pervasive as the meds decreased so this was not something they could have missed on the earlier eegs, so it started since. So we took her off the initial med that treats partials because it can aggravate generalized seizures and left her on medication that treats partials and generalized. I don't think medication aggravated her situation. Still get episodes that match partials infrequently but the other seizures are controlled. Weird, yes. Sounds similar to you though. Sounds also like something akin to pseudo Lennox syndrome, atypical absence without an obvious encephalopathy is not common from what I can gather. As she's a kid, they think now that she might grow out of these.
 
Hi Nutterzxox,
I've had right temporal lobe epilepsy for 44 yrs. now. When I was a kid I started out having absence seizures then 2 yrs. later the complex partial seizures started also. When I was in my 40's I started having myoclonic seizures for a short time also.
According to my neurosurgeon and Epileptologist the reason why my seizures changed is because I has so many absence seizures when I was younger that damage spread to the frontal and left temporal lobe also but when I had testing done it didn't show any of the damage because it was so deep in my brain that the tests didn't pick up anything.
When I was having brain surgery done that's when my Dr. found the damage in my brain that the tests didn't show. The Dr. was able to remove 75% of the right temporal lobe and all of the right hippocampus. Just like the Dr. told you about your child possibly outgrowing the seizures I was told the same thing back in the 1970's but I wasn't that lucky. Have your daughter start taking vitamin B12 once a day that has really reduced my seizures a lot. I wish you and your daughter the best of luck and May God Bless the both of You!

Sue
 
How do you take the B12.i bought stuff on net surppose absorb through skin but felt no different
 
Sue,

Generally atypical absence is associated with bad syndromes and often intractable so it is promising to not have that. Still, it isn't exactly like PLS and missing fundamental pieces in the BRE/LKS/ESES spectrum. So I'm definitely not holding my breath but I would bet there's a piece that's genetic, partial episodes could still be due to damage and not resolve. It would be interesting to have them do more to compare genetics of adults with E.
 
Hi seagull,

I buy the vitamin B12 pill and make sure it's 1000 mcg. once a day. Just take it in the morning with your breakfast and it see how it works. I know it has worked great for me keeping the nerves calm and reducing seizures a lot. Wishing you well and May God Bless You!
Sue
 
I take a sublingual (dissolves under the tongue) B-12 500mcg because I do not absorb B-12 through my gut too well.
 
Hi Nutterzxox,
I've had right temporal lobe epilepsy for 44 yrs. now. When I was a kid I started out having absence seizures then 2 yrs. later the complex partial seizures started also. When I was in my 40's I started having myoclonic seizures for a short time also.
According to my neurosurgeon and Epileptologist the reason why my seizures changed is because I has so many absence seizures when I was younger that damage spread to the frontal and left temporal lobe also but when I had testing done it didn't show any of the damage because it was so deep in my brain that the tests didn't pick up anything.
When I was having brain surgery done that's when my Dr. found the damage in my brain that the tests didn't show. The Dr. was able to remove 75% of the right temporal lobe and all of the right hippocampus. Just like the Dr. told you about your child possibly outgrowing the seizures I was told the same thing back in the 1970's but I wasn't that lucky. Have your daughter start taking vitamin B12 once a day that has really reduced my seizures a lot. I wish you and your daughter the best of luck and May God Bless the both of You!

Sue

Porkette,
Are you speaking to Nutterzxox or Hobbes? I didn't see Nutterzxox mentioning any kids in the 1st post. Sounds like you must have been speaking to Hobbes?

I had a Left Temporal Lobectomy back in 1990 and it made my generalized seizures much worse. No Vitamin B12 helped me out one iota. And my brain damage is deep in my left hippocampus. Therefore, they cannot go in and do another surgery, otherwise I would end up like an end-stage Alzheimer patient, not being able to speak or understand, since the hippocampus is the language area of the brain.

However, my mother was starting to have memory problems and her dr. discovered she was low on O2 and definitely low on vitamin B12. Since starting O2 treatment and vitamin B12, she is improving. My memory will never improve.

Once again, info from www.epilepsy.com on TLE:
http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy

What is temporal lobe epilepsy?

The features of seizures beginning in the temporal lobe can be extremely varied, but certain patterns are common. There may be a mixture of different feelings, emotions, thoughts, and experiences, which may be familiar or completely foreign. In some cases, a series of old memories resurfaces. In others, the person may feel as if everything—including home and family—appears strange. Hallucinations of voices, music, people, smells, or tastes may occur. These features are called “auras” or “warnings.” They may last for just a few seconds, or may continue as long as a minute or two.
Experiences during temporal lobe seizures vary in intensity and quality. Sometimes the seizures are so mild that the person barely notices. In other cases, the person may be consumed with fright, intellectual fascination, or even pleasure.
The experiences and sensations that accompany these seizures are often impossible to describe, even for the most eloquent adult. And of course it is even more difficult to get an accurate picture of what people are feeling.

What are the types of temporal lobe epilepsy?
Temporal lobe epilepsy is the most common form of partial or localization related epilepsy. It accounts for approximately 60% of all patients with epilepsy. There are two types of temporal lobe epilepsy; one involves the medial or internal structures of the temporal lobe, while the second, called neocortical temporal lobe epilepsy, involves the outer portion of the temporal lobe. The most common version of these two is medial temporal lobe epilepsy.
Medial temporal lobe epilepsy often begins within a structure of the brain called the hippocampus or its surrounding structures. It accounts for almost 80% of all temporal lobe seizures.
Medial temporal lobe epilepsy is also considered a syndrome, which means that a lot of different conditions can result in medial temporal lobe epilepsy. Individuals who have medial temporal lobe epilepsy have seizures by definition of temporal lobe origin.
There are a lot of different older names for the seizures that occur in temporal lobe epilepsy, including, “psychomotor seizures”, “limbic seizures”, and “temporal lobe seizures.” The modern name for these seizures is “complex partial,” if there is loss of awareness or “simple partial” if awareness is retained.
While medial temporal lobe epilepsy is a very common form of epilepsy, it is also frequently resistant to medications and associated with a particular finding on an MRI. This finding is called hippocampal sclerosis (sclerosis means hardening) and it makes this a challenge to treat both medically and oftentimes surgical therapy is the best option for these individuals.

When does temporal lobe epilepsy usually develop?
Medial temporal lobe epilepsy usually begins at the end of a first or second decade in most people, following either a seizure with fever or an early injury to the brain. In women, hormonal influences during their menstrual cycle and ovulation may lead to reports of increased seizures during their menstrual cycle.
(That's what did it for me)

What type of seizures are seen?
Seizures in temporal lobe epilepsy include simple partial seizures, such as auras, and focal seizures with complex impairment in consciousness, otherwise known as complex partial seizures.
The most common auras are déjà-vu experiences or some gastrointestinal upset. Feelings of fear, panic, anxiety or a feeling of a rising epigastric sensation or butterflies with nausea are also other ways in which auras present in medial temporal lobe epilepsy. Some people also report a sense of unusual smell; this may raise a possibility of a hippocampal abnormality or a tumor in that area.
Complex partial seizures can be associated with a fixed stare, impaired consciousness, fumbling with their fingers or lip-smacking movements that last 30 to 60 seconds. There can be a posture change in an arm that also can help to delineate the location of these seizures. Some people also note problems where they speak gibberish or lose their ability to speak in a sensible manner. Some individuals report difficulty with the language, particularly if the seizures are coming from the dominant temporal lobe. Some people may have a generalized tonic-clonic jerking and this can lead to weakness after the seizure has stopped.
Some individuals can also have prolonged seizures and in some rare situations, status epilepticus may occur.
 
Yes--same thing here. I was diagnosed with right temporal lobe epilepsy, EEG confirmed--mostly complex partials and simple partials, one generalized TC. Many many years later, I was clearly having myoclonic seizures--after determining my mother had an absence seizure and an abnormal EEG and my son had two seizures when he was an infant (thus a possible genetic basis), a research hospital epileptologist suggested I have both TLE and idiopathic generalized epilepsies (related to JME). The doctor thought the IGE came about much later in life, because taking high doses of gabapentin 'awakened' the myoclonic seizures and kindled the IGE. So now I have both apparently. I get where you are both coming from--it really is more limiting in what you can take in order to control both effectively since so many effective meds that control focal seizures amp up generalized epilepsies, like IGE and JME. I have nearly constant myoclonics on gabapentin, lamictal and now tegretol.
 
Hi seagull,

I buy the vitamin B12 pill and make sure it's 1000 mcg. once a day. Just take it in the morning with your breakfast and it see how it works. I know it has worked great for me keeping the nerves calm and reducing seizures a lot. Wishing you well and May God Bless You!
Sue

I thought no work as pill. I like try sublingual do you get on net cos I never seen it in uk
 
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