Biofeedback, Nutrition

[epileric]

Epileric, Nakamova, I am curious, do you take any supplements, you may not wish to share and that’s OK to...

I do take calcium, Vit. D and an omega 3 supplement as well as a protein shake every morning.

For years I used to take over 6 supplements every morning including CoQ10, a B complex and numerous others that I can't remember right now. I was very surprised to not see a difference in my seizures or energy levels when I stopped.

The reason I'm still on the Calcium & D is because of the side-effects of my tegretol. The omega 3 is just in hopes that I will see a difference.

 

[Nakamova]

I try and get as much good stuff as I can from dietary sources, but I do take supplements as well:

D/Calcium/Magnesium: I test low for vitamin D, even though I get a ton of sun. Calcium because anti-seizure drugs can drain it from the bones. Magnesium because it's absorbed well with the others, and is good for heart and brain health.

I also take a multivitamin, and extra B12, since the Lamictal causes a bit of anemia.

Since I'm about to have bone graft surgery, I'm adding a supplement that is supposed to help with bone growth and strength. (It contains B12, K2, Silicon, Choline and Inositol, and works in conjunction with the Cal/Mag supplement I'm already taking).

Since my seizures are controlled by the Lamictal, it's hard to tell if any of the vitamins I'm currently taking play a role in seizure control. I am curious about things like DMG, Taurine, Tyrosine, L-carnitine, 5-HTP, CoQ10, but I don't want to add to my current vitamin bill. If I taper off my meds in the distant future, I might look again at some of these along with any supporting research or anecdotal evidence of success.

 

[Chaz1]

thanks for great feedback...

Thanks Epileric, Nakamova, rocking feedback..I’m not loading him up on anymore, just yet.

I agree should be from good/ the right foods but if med depleting then we want to be covered, he blessed to have access to mainly organic. Real interested so see his overall blood levels and will be sharing. Doc (not neurologist) said to wait to see eptologist to cover all. Can’t come quick enough for me.

The Omega and E we introduced 3 months after meds (late 2009), was feeling depressed (my happy go lucky kido), within a few months he said it helped ‘him’ a lot and helped lift some brain fog..(placebo maybe but maybe not), did reduce E from 400 to 200, we stuck with it since..

D and B complex introduced this year (way too many break throughs and added B for stress), pretty sure he needs more D. can’t buy over 1000iu D over counter, everyone looks at me like freak when asking for it, going to wait for blood tests and if low order net. Spring, sun is back shinning, Spring, as Robin says, 20mins sun = 10/20000iu of D and eager to see what blood test show on the B..If no need, we remove for sure…

but u both give me plenty to think about and as I see it more options, thank u...hmm C, hmm....going to wait for his blood tests...

 

[Ruth]

Hi Chaz,

I take, for my supplements:
Vitamin B Complex
Calcium with Vitamin D
regular multi vitamin

 

[RobinN]

Chaz - what about 1000iu 3x day ?

 

[Nikkal]

seriously, Robin? You're suggesting that there is ANY equivalency to vitamin D synthesized by the body through sunlight exposure (where the body has its own built-in feedback loops to prevent toxicity) and oral doses of a fat soluble vitamin known to cause increased serum calcium at levels beyond those recommended by nutritional scientists? One that is a serious systemic toxin at high doses?

 

[Chaz1]

Nikkal, blood test determines V and M shortage, not speaking for Robin but having read her journey with her daughter that’s where Robin is coming from. My Son is tested soon (like 4ever wait) it will be interesting to see if he low, or not...med (and its impact) can and does play havoc...I’ll come back on this.

Thank u Ruth, glad to hear we not far off you

 

[RobinN]

Sometimes when one is unable to get the natural form into the system, we need to find alternative ways.
Many pharmaceuticals are also toxic, but are you here to argue that people should not take them?

 

[Nikkal]

where did I say people shouldn't take necessary supplements? If your D is low, which can be determined by blood test, then of course you should take a D supplement...its better than skin cancer.

my point was that it is factually incorrect to imply that because the sun CAN cause our bodies to produce megadoses of Vitamin D*, doesn't mean that we should take more than is indicated by the aforementioned blood test. Without evidence of depletion it can be very harmful to take doses much in excess of the RDI.

*Based simply upon the chemical equation that creates Vitamin D in our bodies, people say that the body actually creates megadoses. It does not. There is a feedback mechanism in our bodies that prevents that from happening. If it didn't, people who live in sunny climes and don't use sunscreen liberally would be sick or dying from Vitamin D toxicity (it's real, ask the supplement maker who ended up gravely ill from his own products due to lousy quality control).

I don't think people should take supplements based on their use of Google or because some salesman tells them they should. Supplements should be used where necessary and at the lowest effective dose - especially fat soluble chemicals and those (like vitamin c) where excess can cause organ damage during elimination.

the only supplement I take is folic acid, as prescribed by my physician, to help counteract a deficiency caused by a medication. My other vitamins come from food (natural and enriched both).

 

[Chaz1]

Nikkal, food for thought.thank you...

We learn from each other’s opinions/research/trails and errors, and plain old living, so keep it coming.....

 

[RobinN]

Nikkal - you seem very combative with me. Sorry if what I write irritates you.
Our levels have been discussed with an MD Nutritionist. He is very pleased with Rebecca's improvement.

I am glad that you have been able to manage your systems needs through food sources. That will be our ultimate goal, but not one we can switch to at this time. Again this was recommended by the MD.

 

[Chaz1]

A little update from me...bit long but here goes.

Well, the kids headed off on their holiday this week and are heading home today. We got the dreaded call Wed morning from his better half; he had a T/C seizure. Yes, they had some relationship stress and we all know holidays can bring that on

Living and coping with E is such a journey for our loved ones (to learn) to live with and manage. For some reason (probably being on holiday) this one really opened his girls eyes to the how E makes my son feel, they talked in great length about this and my boy told me it was like the best therapy session he ever did have. He felt understood.
We know how we feel when we see a seizure but to understand or at least try understanding how the person having seizures feels can give great peace to the E sufferer. Understanding the pent up frustration, is it the meds or just coping with life and living with E getting him down, making him angry/frustrated, sometimes shame (its crap but its true), the physical pain and hey the simple "what about me because I have to live with all this!"

But there is some good news in this. His seizures HAD moved from nocturnal to daytime and started happening at work, this freaked us all out but never mind us it’s my boy who has to live with the aftermath. His T/C seizures are back to nocturnal (morning coming out of sleep) and they are getting much shorter in length and having less overall 'body impact' and we are seeing extreme quick recovery. His nocturnal seizures often hit the 5 min and diazepam has been needed to stop the seizure, his last 2 T/C seizures clocked in at 2-3 min and quick recovery.

So, the kids continued with their holiday and they had a royal blast and some amazing quality time together. Slowly but surely they are learning how best to live and cope with E, a little understanding can really help the E sufferer.

We will never, but never stop looking for the potential triggers, the alternatives and being mindful of healthy living, body and soul, the whole being.

So we reset the clock again to seizure freedom, one HE is going to achieve.

 

[Nakamova]

hi Chaz, I'm glad there are some positives to glean from your son's recent seizure; I hope recent positive trends continue in that direction. Question: Has your son ever had a sleep study done?

 

[RobinN]

The one gift given to my daughter has been weekly therapy. It has helped her cope with the highs and lows. Her therapist is an angel < no other word for it.

 

[Chaz1]

Hello Nakamova, no sleep study done yet. He should get appointment with the eptologist very soon so we will discuss for sure...thank u...

Hello Robin, I soo agree with you. He just finished his biofeedback session and his talk therapy, so will be catching up with him on that. He loves his therapist, such a nice young man and one my Son relates to well.

Growing up (entering prime of life) and suddenly having to deal with all that comes part and parcel with E and seizures…Was so ready to simply plough into the world as the young Lion he is. The horrible meds (I know needed for now but will not stop until we get him off of these) and confidence hit with a ton of bricks (that battle he/we going to win).

So important to talk about everything, because I have noticed that if we do not, emotions spiral quickly and for my Son that = seizures, so I stay real close to give support on anything needed, it is helping them cope better (not only my son has to cope but his lovely girl too). My heart breaks for those suffering struggling with E and being given the med ONLY and left to deal with the rest alone.

We also are signing him up for Pilates this week to see if he likes it and to burn some energy...and breathe and stretch and relax.

 

[Nakamova]

Interesting about the Pilates. I read one anecdotal account of someone who took up Pilates and meditation and found that it helped to reduce her seizures and minimize physical injury from any seizures she did have. I hope it does similar things for your son!

 

[Chaz1]

Nakamova, thank u...

"helped reduce her seizures and minimize physical injury" sure worth a try then and his therapist was delighted to hear he was getting in ‘motion’ so he even more eager...

 

[Chaz1]

So, on the journey and today 2 weeks seizure free

Like to sum up the last two bio feedback/NFB/ therapy sessions....both great...

Had different therapist for one bio feedback/NFB sessions (only), taught him how to ground himself. let’s say the music never leaves my sons hands. He showed how to earth himself (no new age in my clan, none), literally, something so simple like sit in the chair and feel it and allow the feet to touch the ground and feel it (he learning). So this has been in practice 2 weeks and my son is using and finding this relaxation method beneficial.

Then a short sweet and powerful session (as he summed up) with his usual therapist, agian used earthing technique, even though his bio feedback/NFB video (they choose what they want to watch and his therapist is super stimulating) was highly exciting, the brain managed to control the exciting moments better, i.e. excite and then back to relax mode. His EEG (not hospital EEG, private so more detailed) showed an area of his brain that stayed in hyper alert mode and this is what they are training to relax. Simply put, the minute his eyes are open an area of his brain goes into hyper motion and just stays there, anyone interested I can share more on his EEG..

Meds, well with increase it has been rough enough…the rage he can feel, he mentioned he is much more aware of this emotion and is actively controlling (he at the very least aware @ trying). We talk to eptologist on this 4 sure.

We still waiting for the eptoligist appointment, any week now.

Next week he check out Pilates, actually was his therapist how told him it was cool and not girly as he had his doubts, his neck and muscles need the stretch, as those of you with E will know, stiff can be the norm.

In meantime, out there living the life of any 26 years old and enjoying it.

 

[Nakamova]

Very interesting stuff Chaz, thanks for the update. Just out of curiosity, is the Biofeedback/NFB something you have to pay for out of pocket, or is covered by the government?

 

[Chaz1]

Nakamova, hello,

Health care covers, we pay highest packet out there but receive good health care in return. We pay for all EEGs and interestingly these are studied outside our country, but they spotted something his neurologist never did, but neurologist are not left to deal with E patients only and more often than not its meds and nothing else on offer, well, we can’t be accepting that sitting down now can we.