Parital complex and Pseudo Seizures, Help Please :(

[ekimak0930]

Any help or insight would be GREATLY appreciated. My younger sister, now 24, has had fainting spells for years. they would occur every so often for no reason. She went to a nuerologist who stated she was fine they preformed an EEG on her. Next it was off to the cardiologist, the preformed a tilt test and stated she had POTS. A disorder where all the blood rushes to her feet and makes her pass out. Well on that medication for a while and she continued to faint. She would get an indication it was coming, numbing face and her chest would tighten. After several trips to the ER, she was sent to have the overnight EEG test. After a couple of days they were able to pick up one small seizure. According to her cat scan she had something on her right frontal lobe. The dr (supposively a great dr here in NJ) stated she had complex partial seizures from her right frontal lobe. This diagnosis happened in February of this year.

The neurologist started her on Gabbapentin, since then she expericed more and more seizures, later becoming more violent. They went from not being able to detect them to full out convulsions in a matter of a few days. What use to be her fainting is now her falling to the floor choking on her own spit.

Over the weekend she was placed back into the hopstial after several weeks of having 8 or more a day. Some lasting as long as 4 minutes but most 2-3. After another round of video EEG, the neurologist is saying she is now having psudo seizures. They let her have one for 30 minutes before giving her that Advant (spelling it wrong I am sure) drung and another for 15 minutes.

My question is has anyone else had episodes like this where they started off with fainting and after given AED meds have gone haywire. Not all of her seizures are psudeo seizures, they are saying that the gabapentin is controlling the little partial seizures.

The freaking hospital released her today. Still seizing 8+ times a day. We still do not know how to tell the difference between the two different types of seizures. She is stil on the gabapentin other drugs have been taken away.

Has anyone had any experience with DR Wu from Robert Wood Johnson Hospital, NJ?

Her seizures seemed to have gotten MUCH worse with being on the gabapentin then they were untreated.

She went from being functioning to not being able to function at all. My mom has already fished food out of her mouth at least 20 times because she was seizing while eating.


ANY help would be greatly apprecaited.

 

[skillefer]

Hi ekimak! Honestly, I havent' been in your sis's shoes. However, medication does not always make the seizures disapear. Also, the doc says that the gabapentin is working to control the seizures due to e, by the sounds of it. If that's so, then the ones that you are most likely seeing are pseudo seizures. Can meds make the seizures worse? Yes. Also, people tend to think that if they just take a pill, the seizures just disappear. That's not the case. For many of us, it takes weeks to build up to the correct dosage, assuming that the med the doc picked out is the right one. And you have to remember, meds only work for about 60-70% of people with epilepsy. Something is triggering your sister's pseudo seizures. It sounds like her best bet might be to start keeping a journal and see if she can figure out what is triggering her seizures.

Here's some things she'll need to write down.

1. How many hours of sleep each night.
2. Food and drink (what, when, and how much)
3. stress (what and what she does to deal with it)
4. odd feelings (odd feelings/sensations/tastes/smells/sounds/sights, migraines, etc...)
5. seizures (when, how long it lasted, what she was doing prior to it)
6. her period (what day it started, how long....)

She also should do the following...

1. Get at least 7 hours of sleep each night (no ifs, ands, or buts)
2. Eat 6 small healthy meals a day (By that I mean it should fit on a dessert/salad plate, and for every carb a protein)
3. Avoid all OTC medication (especially antihistamines...)
4. Avoid all caffeine (no sodas, mate, tea, coffee, energy drinks, etc....)
5. And although this seems embarrassing...don't let her take a bath by herself or swim by herself.
6. Stop all fast food and junk food (loaded with chemicals.) and shop for groceries around the edges of the store...
7. develop healthy ways to deal with stress (writing, painting, art, yoga, meditation, prayer, exercise, etc....)

Here's why....people can develop food allergies over time. So it could be that her body is reacting to a chemical in the food. Also, seizures can be triggered by flickering lights, stress, not enough sleep, hypothyroid, hypoglycemia, diabetes (which is why I suggest the 6 small meals...), cold medicines, hormone shifts, etc.... trust me, there are lots of possible triggers. What your sis is going to do is keep a journal with all this info, and then go back and see if there is a pattern. Also, she should give a copy of the journal to all of her docs. That way, they know what her average day is like...and can see what is going on.

Also, no matter how great the doctor, they can all make mistakes...so make sure that someone goes to the docs with her, lets the doc know what's happening, and makes sure that ALL questions get answered. In fact, write all questions down before you go to an appointment, and write down the docs answer. (meds tend to damage memory as well as make us drowsy) Remember, a good relationship with a doctor is based on trust and dialogue. That means not being afraid to ask ANY question. If she doesn't trust her doc, then she needs to do a little doctor shopping....never be afraid to get a second opinion. Hope this helped.

 

[RobinN]

My daughters seizures were much worse on medication than off.
Love your sisters doctor who says she is fine. Excuse me... she is fainting, now having seizures.... She is NOT fine Doc!

We tried medication with terrible results. Now we are working with nutrition, supplements for brain and body health, and neurofeedback.

Nutrition has made the biggest improvement in the number of seizures. We have also tested her for low blood sugar, and BINGO she is hypoglycemic. So obviously monitoring this, and the quality of the foods she takes in, is making positive results.

 

[ekimak0930]

Wow you guys are wonderful. Thank you so much for the information.

 

[Cint]

Hi ekimak and welcome,

I'm sorry your sister is having such a difficult time. If the Gabapentin is making the seizures worse, then the dr. needs to do something. I'd say go get another opinion from an epileptologist, a dr. who specializes in epilepsy and see if they can find out what is really going on. There is a hospital in NJ that does have epileptologist(s).

I sure hope you do find out what is going on.

Cindy

 

[ekimak0930]

She is set to go for a second opinion the end of May. I am going to relay the diet change and the journal to her.
Anything can help...
Thank you so much