New to this kind of sharing.......

[Shutterbabe]

Hello..... This is all new to me. Feeling a bit shy. I have been having seizures since October 2003, focal point in the right temporal lobe. They were at first only at night, very scary as I live alone and in Mexico. Last year they changed completely and manifested in the daytime during a trip to Europe. They have remained that way and now are shifting again into more violent movements only on the right side. I am having another EEG on Monday. I can feel something is wrong. The neurologist I saw last week in the States increased my medicines-Trileptal from 900mg to 1200mg. I am frustrated and wonder what other options are available besides taking drugs. I was 8 months seizure free until I had 3 huge events 2 weeks ago. Has anyone experienced a shift in seizure patterns, from night to day? Thoughts? Thank you.

 

[Birdbomb]

Welcome Shutterbabe

Seizure disorders can and often do change for various reasons. Sometimes it gets worse, some times they peter out and sometimes they stop.

You will want to rule out any changes in the brain structure with a MRI. EEG only show seizure activity if it's currently present. You can have normal EEGs and still have Epilepsy. MRI will look at the brain structure for scaring, tumors, malformations, infection and other changes.

I think you've come to the right place. We discuss forms of treatments many doctors don't usually bring up. (most of them won't put money in the doctor's pocket....many pharmaceutical companies offer "incentives")

 

[brain]

Has anyone experienced a shift in seizure patterns, from night to day? Thoughts? Thank you.

:hello: Shutterbabe!

Welcome to CWE! And to answer your question:
YES! And to answer another question that you
didn't ask, "Can a seizure shift from one part
or move from one side of the brain to the other?"
Answer: YES!

Many Doctors & Surgeons prefer that it be like a DOG:
SIT!
STAY!
DON'T MOVE!
Unfortunately it doesn't always do or behave in
such like manner to some individuals; you might
as well belt out the tune "Wild Thing".

But hopefully they would run an FDG PET CT Scan
(A FDG PET CT SCAN is better than a PET CT
Scan (Standard) because FDG is more detailed)
or MRI Scan (they do not hurt you at all) and here
is some information:

What is FDG?

2-Deoxy-2-[18F]fluoro-D-Glucose, or FDG, is a type glucose (sugar)

What is PET CT?

Positron Emission Computed Tomography

How does a PET scan differ from CT or MRI scans?

CT and MRI scans are anatomic imaging modalities, which means they look at the size and shape of organs and body structures. A PET scan is a metabolic imaging modality, which means it looks at function. The information collected from a PET scan is different from any other test that is available.

This above in conjunction with your EEG's and
vEEG's (if you had/have one) performed all put
together will narrow things down into perspective.

 

[Bernard]

Hi Shutterbabe, welcome to the forum. :hello:

... I can feel something is wrong. ... I am frustrated and wonder what other options are available besides taking drugs. ... Has anyone experienced a shift in seizure patterns, from night to day? ...

Trust your intuition - you know yourself better than any doctor ever will.

There is a list of non-drug options (diets, CBT, EEG neurofeedback, etc.) you can explore in the chart linked in my signature at the end of this post.

And yes, my wife's seizure pattern has changed radically both in terms of seizure types and frequencies over the years - usually in response to a change in treatment regimen or pregnancy.

 

[jazabellegrl]

I understand what you are saying my daughter since 7 only had 1-2 a year then in Sept they took a turn she now has had 12 seizures in 2 months been hospitalized twice and now having a extremely hard time getting under control She has been on Keppra,Tompamax, Lacmetal and dilaton (only when she been in the hospital) She had a seizure at school and fell down the bleachers to finding her crumpled on the floor blood all over face to seizing a couple times a day. Her last ones were monday started with probably with a absent seizure her friends noticed so they brought her right home then a few hours she was complaining of pain in the neck area running up to the back of head called the doctor said it probably had nothing to do with seizures that it was probably a muscle spasm or neck sprain/strain that night she went to bed I heard noises went up stairs and she was seizing called the doctor told him what was going on said to get her to the hospital. She was combative so we ended up calling a ambulence cause we couldnt get her in the car when we got there they were already doing alot of tests on her right after they did her blood work not even two minutes later she started seizing again in the er they slamed her with advan 4 times and slowly she started to come out of the seizure she was so out of it she tried to talk but couldnt during this seizure she hurt her self they had a hard time trying to find out where cause she couldnt talk when they figured it out she had dislocated her shoulder which took 2 times to pop it back in place. The doctors came back and said no question she was being admitted again. The neuro is talking of sending her to a research hospital cause they dont know why they turn so drastically.

 

[Shutterbabe]

Hi Shutterbabe, welcome to the forum. :hello:



Trust your intuition - you know yourself better than any doctor ever will.

There is a list of non-drug options (diets, CBT, EEG neurofeedback, etc.) you can explore in the chart linked in my signature at the end of this post.

And yes, my wife's seizure pattern has changed radically both in terms of seizure types and frequencies over the years - usually in response to a change in treatment regimen or pregnancy.

Thank you for your message, Bernard. I do trust my intuition but I have not found a doctor who feels my internal knowledge of my own body has any worth. I will explore
your information on alternative treatments. I hope your wife is doing well.

 

[RobinN]

Welcome Shutterbabe -
I think it helps to have a working knowledge of vocabulary and a general knowledge of the disability. I have taken in information to the office, that even the doctors had not heard of.
It is hard to believe in your intuition and yet that is the only thing that has seen me through the rough spots.

 

[TeeTees]

Hi Shutterbabe - welcome aboard :hello:

I'm usually a night sz sufferer, but occasionally do have a daytime one. I tend to find this happens if I'm going through a bad patch such as stress or depression.

As the others have put - YOU are the only person who will know the complete truth about how you feel, but you must share this with others such as your Doc. It's always worth checking out Bernard's links, as you may find little ways you can tweak your general diet/lifestyle to help you cope with, or even minimalize your seizures.

Best of luck

 

[Shutterbabe]

Hi Robin-
I appreciate your sage advice. I am usually very descriptive about my seizures when in a clinical situation but it is my own language, not textbook lingo. I believe in myself and that is how I have survived so many seizures alone while living in another country. I need to learn the right questions and find someone with answers. At times I feel the doctors do not see me or hear me. Why is epilepsy so phantom to some of the medcal community that practices neurology? I usually leave an appointment in tears,
as if I have wasted my energy and money. I have learned more on this site in 12 hours than anywhere else.

 

[Birdbomb]

At times I feel the doctors do not see me or hear me. Why is epilepsy so phantom to some of the medcal community that practices neurology? I usually leave an appointment in tears,
as if I have wasted my energy and money. I have learned more on this site in 12 hours than anywhere else.

You are NOT alone with these feeling. IMHO most doctors just don't give a shit and are more concerned with just getting that almighty $$$. I have found much ignorance in the medical field in regards to epilepsy. And trying to get answers is next to impossible. They pat you on the head, give you a fist full of prescription orders, tell you "take it easy and see me in 3 months"

That's BULLSHIT!

 

[RobinN]

I have left in tears too. It is so-o-o-o frustrating
I have heard there are some great neurologists in Mexico. An artist friend I chat with shares with me and he doctor sounds better than all mine combined. I can get the name if you want.
My one point is, the doctors I have read listen for a on average of 3 min before interrupting you. I decided that I had better use their language so that they did not have to spend those 3 min. trying to decipher what I was saying.
http://www.enotalone.com/article/5076.html
I like some of the suggestions on this page. I might try a few before I go to our next appt.

 

[Shutterbabe]

I like your style.....

I like your style. I am tired of accepting the unacceptable. I waited 3 months for an appointment with one of the Epilepsy BigWigs last year and he was so glib about my condition, completely insensitive and flippant. Be a good girl and take more drugs was his remedy. I flew 2000 miles to get that advice. The drugs made me so sick and I had the worst seizure after one day. When I called his
office, Nurse Rachett told me to continue taking the meds as prescribed and they will see me in a few months. It hurt to be dismissed when I am trying with all my might to find wellness in the face of adversity.:tup:

 

[RobinN]

Yes, I have been there too... and I had a 14 year old looking to all of us to help her be well. It is heart breaking. It is a difficult line to walk, say enough to get your point across but not enough to get cancelled. Sometimes they are put against the wall and will say... "We just don't have the answers yet". That to me is better than being dismissed.

Believe

 

[Nancy]

Same thing here -- take more drugs - take more of those drugs and add these. I did that from 1990 until they finally found the tumor in 2005 (oops -- it showed clearly on the 1990 MRI but they missed it) and removed it in 2006.

I don't know what the answer is ....... I'm lucky because I had a brain tumor ???