Neurofeedback - Rebecca's Story

[brain]

Robin:

Sounds like Rebecca's progressing well! That's
awesome!

[RobinN]

[pmcdonald8]

Robin, my son, Sam had a day of headaches. they lasted 1-2 mins and happened every 15 to 20 min.

Sam described them as being hit in the head with a rock. He would grab his head and hold it ... he could identify the spot of the pain and then as they progressed through the morning noticed it moving from top of head to on side.

I of course called the neurologist after maybe 3 episodes and asked if it could be a seizure...by the time they got back with me it was 4 hours later...they said to give him 2 (or was it 3 Advil) and call them if they didn't stop.... they did stop 30 or so minutes after Advil.

Note, these happened almost to the day that we were watching for another seizure...he had been having them every 22-30 days... but none since we increased his Keppra to 1500 mg twice per day (from 1000mg am and 1500 mg pm).

Within 2 weeks of this occurance Sam noticed a lump under his chin (asked if he could grow another "Adam's Apple"... turned out to be a very enlarged lymph node (about the size of a fresh cherry....plus ultra sound showed 4-5 smaller inflamed ones that we couldn't feel.

neurologist said unrelated to seizures (I'm not so sure).

ENT put him on mega antibiotic for 10 days, no change...10 days more of same antibiotic and within 4 days on this second dose...size started shrinking....we go this Friday to see about the lump...

But to date no more headaches or seizures. KNOCK ON WOOD!

Thanks for the continued feedback on your neurofeedback experience.

Pam

[RobinN]

Yes the migraine incidence is interesting how it is seizure related. But it proves that we are not moving toward the "bigger" event. Luckily for Rebecca it hasn't occurred again.
I am sorry to hear that Sam has had a rough go with them. I always hate to hear of an increase in meds.

Now that lump is worrisome too. Do they think they might be related to the medication. I would certainly do an internet search of such. Just because the doctor hasn't made the connection, doesn't mean it isn't. When I read that a cyst in the sinus cavity could cause seizures, I don't discount anything.

Thanks for stopping by. I am thrilled that our news has been so good recently.

[haird18]

Robinn,
How are we all doing today. I am fighting these headaches daily now, but hey I am hanging in there! Except my biggest problem now is I learned on my own that I am photosensitive and I am learning more about it each and everyday . Last night I felt like I was in another world because I get these black and white flashes out side my eye and it bothers and it bothers me because that was when the doctor in Dallas said it could be seizures in the occiptal lobe. But, all of you have I have one of the most gomplicated cases any neurologist/or epileptogigist has seen even radiologists are baffled at what they see. In the next few years you will be reading about me from researches and text books!!The next quest I have is how success are in depth ecletrodes .I really need to know the risks. I also want let you know that my neurologist found that I was low on potassium, and I take magnesium .and I am taking melatonin for sleep because I don't sleep with all these problems I struggle to keep going. If any of you know more things I could try let me know!!

Dreams
Whne you find adream inside your heart don't ever let it go..
For dreams are the tiny seeds from which tomorrows grow..

YOURS TRULY,
DAVID HAIR

[RobinN]

Well... we had a bit of a set back yesterday.
It was Rebecca's last day of school, and she wanted to go ice skating after. Everything seemed to be going fine. Her dad had called and told me he was going to pick her up, and when they arrived home....

she had had a seizure right before he arrived.

Of course there are issues now at the ice rink. They could not find our telephone numbers. Really... How is that somehow a fault of ours? I gave them to one of the owners, and the fact that they can't seem to train their staff as to where the emergency numbers should be kept is truly a mystery to me.

She is 3-4 days into her period. Darn this time of the month!
I don't have much info on what she consumed. If she was skating hard, was she drinking water, etc.

Very frustrating, as she has been doing so well recently.

On the better side, we are going today for my neurofeedback training, and bringing the equipment home. Now where to put it is the next question.

[brain]

I received my Issue of Neurology Today and Dr. Martha
Morrell's article was in there, and talking about Women's
Issues in there - and how much MORE is needed to be
studied upon with women (with Epilepsy), and it did
make references to all areas of 'womanhood' - including
these monthly things we can do without!



Catamenial Epilepsy ~ one thing 'us' girls & women would
love to flush it down the toilet and not miss it - or is it
possible to "Fed-EX" it to ALL THE MEN overnight?



But look at it this way, Rebecca's progressed a lot overall,
she's come this far - so I'd say that's quite an accomplishment.

NOW as for the Machine - you can always make your hubby
sleep on the couch!




KIDDING!

[Bernard]

Give Rebecca my regards. I'm hoping that is one of the last seizures she will ever have.

BTW, excitement is a form of stress too and can be a contributing factor to triggering seizures.

[jazz'smum]

Robin i have read Rebecca's Neurofeedback today.
I am pleased that it has worked well for her.

I wish you all the best wishes for your training and continuation of nuerofeedback at home.
Hoping that Rebecca's seizures are gone soon.

I would also like to say congratulations on her success at school and with Iceskating.
All the very best for the future
Cheryl .

[RobinN]

Bernard - In the middle of your stressful situation you can come up with that video.... you are one tough cookie. We need to ask Zoe to design a cookie and name it after you.

Yes Rebecca does tend to allow herself to get stimulated easily, and is able to push it past the "norm". I am hopeful that one therapy suggested with NFB will allow her to self regulate better.

Cheryl - I appreciate your good wishes. I am very hopeful. It is just so difficult with teens, because of course I am the one that she wants to butt heads with.

[RobinN]

Today is the "anniversary" (what is the word when it is of a negative event?) of Rebecca's first two seizures. The first one was in the morning around 11:00 and the second one was at midnight.

We have come a long way since then. Been on quite a journey, but I can't say it has all been negative. I have learned A LOT. I have met a bunch of great people and learned more about human nature than I really wanted to know. I have been educated in ways I would never have imagined, and have found a strength within that was drawn on to combat this monster.

I carry the belief that for many this can be "cured", but one can not sit idle and expect others to figure it out for them. It is an individual journey, but luckily there are places like CWE to offer support and strength to keep turning those stones over, one by one.

I will always be indebted to Bernard, Zoe, Dr. Uzzi Reiss and Sue Othmer for their wisdom.

I highly recommend the books:
Epilepsy: A New Approach by Adrienne Richard & Joel Reiter, M.D.
Symphony in the Brain by Jim Robbins

[RobinN]

Darn it.

Well we only made it two weeks and Rebecca had a seizure this morning at summer school. Around 8:30 a.m. Seems sheis having less, but they are longer. Not necessarily stronger, but longer. The EMTs checked her out and I signed the release. She rested and then went back to class.

Her dad took her for a Breakfast Burrito before school, which is not on her nutritional plan due to cheese, non-organic bacon, and flour tortilla.

She has also been non compliant with her vitamins (magnesium) lately (busy schedule), and being consistent with her progesterone cream hasn't been easy. Body functions are not what they should be.

NFB has not been a daily ritual. I need to make it a priority. I want to see better results.
Off to do it now.

Good news, I have not had migraines in over 3 yrs. Magnesium is the key.

[jazz'smum]

Sorry to hear this for both you and Rebecca.
Hope she's feeling better this afternoon.

I will recommend magnesium to a work collegue who suffers migraines.
My friend has MS and also takes magnesium with fish oil and says it make a big difference...magnesium is amazing!

Best wishes

[RobinN]

Thanks Cheryl - keeps slapping her down.
We have seen such a reduction that I know we are on the right track.

[Bernard]

... a Breakfast Burrito ... non compliant with her vitamins (magnesium) lately (busy schedule), and being consistent with her progesterone cream ... NFB has not been a daily ritual...

It's tough to stay focused on the routine. It's been a big problem for Stacy in the past (when she first started on Dilantin). She gets to feeling really good and normal (I think the NFB plays a role here) and diligence to the regimen (diet, sleep, etc.) starts to wane a little at a time with no immediate consequences. It adds up though and catches up to her in the end. Her most recent seizures were caused I think because she totally blew her diet and sleep while being overloaded with stress in organizing a camp for the Boy Scouts.

[RobinN]

Yes, I agree with that Bernard.

We are coming in on Rebecca more sensitive time, and it looks good so far. I am reminding her to put one foot in front of the other, and to really be thoughtful as to what she eats, drinks, time she sleeps, staying positive, drink water, watch vitamins, and we are doing NFB minimum 3 times a week.

Keep your fingers crossed.

[RobinN]

Made it through the hump and counting down a clean 30 days
We are leaving for the east coast during the "drum roll" so I am celebrating here early.

Hooking her up to NFB each day because we will be gone for a week.
Wish it was that easy to workout and fit into a bathing suit.

[RobinN]

I did not get a chance to do NFB as often as I was counting on before leaving on vacation. Rebecca came down with a fever and was feeling quite lousy. Her fever got as high as 102.5 and I began to be really concerned that it might trigger something. However, she did very well and made it through this flu bug without much problem.

Keeping her on schedule while travelling is not easy either, but she is doing fine... so far. Diet has been adhered to, and that can be frustrating when everyone else is eating food that looks sooooo good. I am making the same nutritional choices as the girls so they don't feel strange. Rebecca brought a friend that has had fibromyalgia since the third grade, so she is on a GFCF diet too. It was the best decision to make to bring her along.

[Bernard]

That's encouraging (no seizures during the illness/fever). I hope you, Rebbecca and everyone else are able to relax and enjoy your trip.

[RobinN]

That we did Bernard. Action packed but it was a very fun week.
Only one day where she had CFS like symptoms but other than that a positive trip.
Posible reasons for this might be:
changes in sleep pattern and time change
disruption in vitamins and not taking them on the planned schedule (especially magnesium)
Lack of water intake even though reminded
Having just suffered a bad flu bug
No NFB in 1.5 wks

24 hrs and it was over