Drat!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Robin, So sorry to hear about Rebecca. She is in our thoughts. My daughter Janae had one this morning before school...sucks...She is only 5 so at her school no one thinks anything, the kids don't know what's happening yet anyway. Good luck Robin..you seem to be so wonderful with Rebecca...
 
Thank you Denise... I hit it right a few times. I think she knows I am trying my best. However, she lets me know now when I am totally off base and I know to back off and crawl back under my rock.

Sorry to hear about Janae. Is she okay the rest of the day after she has one?
 
Hump Phases?

ROBIN?

I am getting worried about Rebecca,
and is she on any medication at all
during the school time?

My Doctors had to schedule me because
I would have a "hump" period (where
I would be prone to seizures) - so the
medication dosage had to be on a set
schedule so there wouldn't be "humps".

And from reading your postings, it's
coming to me that Rebecca is going
through a "hump" period during that
time phase. Can you talk to her Doctor
about this? There are some medications
where instead of a whole pill, you can
take half of one in the AM and the other
half at such and such time, to cover that
hump period.

Something to consider there.

For your info:

I'm on Klonopin .5 TID (.5 x 3) - but
there are times I experience a "hump"
and I can cut that .5 in half - and take
it and then take the other half with the
regular dosage as usual; because I had
to take my meds earlier than usual
which knocked me "off schedule", I'm
still .5 TID - it didn't change anything,
it just "tide me over the hump". And
the next day was normal as usual.

I've had other medications in the past,
such as Ativan, Klonopin, Mysoline -
which I've had to cut or take an extra
one to tide me over the 'hump'.

I do not get very many humps - just
once in awhile when I've got far too
many stuff jammed in on one day (like
tomorrow - Friday) - I've got my .5
already cut in half but have it in 2
pieces; and in my wallet just in case
it gets to be a long winded day
tomorrow - so the chances will be high
for me to have a 'hump' period(s),
but I'm hoping it will go quickly and
not be long winded.
 
I am so sorry to hear that Rebecca is having so many seizures.
I really don't know what to say concerning this but I do wish you, Rebecca and your other family Best Wishes in getting this stopped and under control.

Hugs, Tammy
 
I appreciate you thoughts Tammy.
Other than being knocked around a bit, she is going on with her life in teen fashion.
Off at public skating session tonight, and I am sure there will be a movie request at some point this weekend.
I hope to have some new answers this month.
 
Rebecca had another seizure last night, at the skating rink.
She was asked how she felt and she said her legs hurt and her neck hurt. So they immediately didn't take any chances and put her on a board, and immobilized her neck. Once at the ER, I was able to talk to the doctor and explained to him that she didn't actually hurt her neck. She is learning about what she can say and what she has to with hold. She is fine. She wasn't moving when she had the seizure, though she was on the ice. I am sure she scared many of the skater though.

The seizures are down this month which I find interesting, now that the meds are out of her system. We have had our appt with the EEG Institute, and after two more appts with other specialists, we will make the decision as to whether or not we invest in the neurofeedback. It seems like a win win experiment though. One that I might be able to ask the insurance company to support.

Curious how much one visit to the ER costs the insurance company.
 
We went to the GI doc today. He doesn't have any clue as to the connection between the GI tract and seizures. He told us he has no knowledge of diets that are useful, and as for the constipation that Rebecca has had most of her life, to continue taking the magnesium if it is working. Said, "Why should I give you an expensive drug when the M is doing the trick." Also said that he is open to info and if I can find him any medical references to a connection between constipation and seizures he would be interested. So I am on a search, if anyone has come across anything it would be much appreciated.

I was reading tonight how constipation can greatly affect the breakdown and the absorption of AED's. Perhaps that is why she has had such a terrible time with them.

Onward to signing that check for neurofeedback, and perhaps doing a trial of upping the magnesium a smidgen. Doc said no problem... we would see the results.

Oh I also found out through the grapevine that Rebecca has had some major infractions of her diet the past two weeks. Thus increase in seizures...
Thank you very much!
 
Last edited:
I've found that a full bowel or full bladder increases the chances of me having a sz.

I'm sure Rebecca knows to drink lots of water to help things move in the GI tract.

I really wish you both the best of luck with the neurofeedback.

Best wishes to you both.
 
Cute Bernard

Rebecca went 3.5 weeks without a seizure, and lately that is quite an accomplishment.
But yesterday due to her TOM she had one. Right around the typical time of 10:15.
I felt bad because the school tried to reach me and I did not have cell service where I was working. My darling son, left work to come sit with her until she was feeling better. Of course she has no recollection as to what happened most of the day. Her english teacher thinks she did it deliberately to get out of class. Such nice people.

I see an improvement in seizure control though. Of course I have done a few new things this month, so I can't put my finger on any one thing.

I added:
selenium
L-carnosine
N-Acetyl Cysteine

I increased her Ultra Omega and added another in the evening along with Vit C, and a second L-carnosine. We have been better about the additional 500 mg of magnesium.

Her diet has been a lot better, but I still see places that I can eliminate the infractions that Dogtor J speaks of. I need to find a gluten free bread that is edible.

Stress has been very high this month, but she continues to be a trooper, and her weekly therapy is invaluable.
I also hope to have positive results to post regarding her neurofeedback that we began 3/13/08
 
I don't know what this means, and I am trying not to read too much into it, but being cautious, non the less.

Rebecca came to me tonight at about 10:30 and told me that she has been getting sharp pains in the right front area of her brain. She says they are a pain level of about a 7, but that they only last about 3 sec. It has been sporadic from time to time since about 7:00 she says. She didn't keep track of them, like I would have suggested she do, if she had told me about them when they first started.

The reason this has me a tad bit worried, is that this is the area that she has a heterotopia, and the vessels are a little bit different in that area. Her eyes appear to be clear.

I told her to wake me in the night if they continue.
 
I've had headaches like that. For me, they only show up for a few days then go away for a month or so. I don't know if they are epilepsy related or related to my head injury. Although the pain is very short, it is severe. It can make me very nervous. I never know when one will happen so the anticipation isn't exactly fun. It wakes me up when I am asleep too.

I hope you all figure out what is causing the pain your daughter is feeling and put a stop to them. they are definitely not fun!
 
Have you considered?.......

I sometimes get sharp pains near that area, but generally attribute it to night-blooming plants in the area...anything new growing around your neighborhood?

Don't discount your original theory of course!....it's just another possible as this sounds almost EXACTLY like what happens to me. SEVERE headache pain...highly localized...gone very quickly.

My solution has been to do a sinus rinse as often as possible (otc available for about $10) and it seems to keep that stuff away.

:twocents:

:rock:
 
I hope it is a transient experience and she feels better soon. She might try visualizing herself doing her neurofeedback when she feels off. She's probably done enough sessions to where she can "jump into the groove" with little effort.
 
Now that is an interesting thought Bernard. I will suggest that.
Might be because she knows that Sue is out of town and she is only having one session this week.

We are coming up on our last final few here. I agree she most likely can visualize it.
She wasn't complaining this morning so I sent her on her way.
 
I have had these occasional pains over the years that do not seem related to my E. My pains are VERY piercing and bring me to a stop or even to my knees. They rarely last longer than 10 seconds, but do come in streaks. They feel like someone hit me with a hammer only even more pinpoint than that, not like a regular headache or even a postictal headache. I get them in different locations of my head.

I have never done anything more than discuss them with my doctors as they only occur occasionally and are brief.

I hope Rebecca has a good day!!!!
 
Bummer! I thought the neurofeedback was really helping her progress.

With regards to her diet, I belong to a weight loss group that emphasizes that we write down everything that we eat. Frankly, I hate to do it because it's inconvenient, and I'd rather ignore my bad eating behavior. But so many people who actually do write down foods successfully control their diets.

I'm not sure if Rebecca writes down her foods, but it would give a more accurate picture of foods or dietary intake prior to any seizures. That would work especially if she cannot recall what she ate.

I haven't had the headaches, but maybe simple stress did it. She probably experiences a lot of peer pressure. Does she get final exams right now? That could be an added pressure.
 
Last edited:
It was just last night and maybe it was how she was laying on her bed. She was IMing her friends, and I think she kinked her neck. I told her perhaps it was a pinched nerve. Today she was fine.

The neurofeedback is helping her beautifully. I am overjoyed with the outcome.
 
Grumpy

Robin; I find it hard to believe that you can get grumpy you are always so up beat in what ever you do. So I am sending you a big hug both for you and Rebecca. My hat is of to the man of the house the support crew. LIfe with E is well surprising to say the least when we think that the ball is in or court the line judge calls it out without review. Stress is the devils advocate frfom the sound of thing with female issues, school, rehersal and skating, NFB all are alot for a body to handle won't be long and it will be summer break and some of the stress will melt away and the Rebecca's body will hopefully see some smoother waters. Wishing your family the best
Jerry
 
This thread is from a long time ago Jerry - November 2007. This is page 5, and I have put it all in one thread... I keep adding to it, so you need to read the date to know what has happened recently.

Sorry for the confusion. I am not grumpy now. I guess I should consider how I post in the future.

She really is doing very well since starting Neurofeedback.
 
You must log in or register to reply here.
Back
Top Bottom