Biofeedback, Nutrition

[RobinN]

Robin, the biggest hug by the biggest huggy bear does not even come close to the hug I am sending you.

You have no idea how much I am needing this today. Thank you

I wish the young would understand how important sleep patterns are on health. Even with migraine, it is recommended to stick to the same pattern, weekday and weekend.

Not like I follow my own suggestions... I was up until 1:30A last night.
Then we wonder why we don't feel our best onder:

 

[Kaitybugsmom]

I wish the young would understand how important sleep patterns are on health. Even with migraine, it is recommended to stick to the same pattern, weekday and weekend.

Ugh...me too. Kait has been pulling some late nights this week trying to study for some test and to make up a ton of assignments that she has missed. Hoping that with the late nights/early mornings + bad diet + her menstrrual cycle doesnt trigger anything.

 

[Chaz1]

Last seizure March 10th, 5 days free again. A fresh start.

He is sticking with the up early and its tiring him out. He is sleeping exceptionally well.

Had to go in (as a parent you just know it) for round of parent to kids counseling (its so hard for his better young and sweet half to digest all this) but it helped them big time. Having to repeat herself over and over was becoming an irritation, chatted openly about this and she came to terms that it is part and parcel and better to write it down for him (cook book, structure) or simply repeat again – but from the heart. Can take on a big project and see it through to the highest standard, but asks how to boil a potato 10x, cold or hot water? My Son is seriously sharp and articulate, things he was sure the meds took away from him but a combination of biofeedback, supplements , therapy, excellent diet and now sleep are definitely helping...I see it before my very eyes.

Back on the positive track…

 

[Nakamova]

I think getting a good night's sleep can be half the battle sometimes...

 

[Chaz1]

Day 7, seizure free and spirit is high.
Sleeping 7/8 hours solid nightly due to ‘early up’ routine switch....
Yes Nakamova, there is a clear change. Insomnia gone, yes gone, wow…..so was bad habit and growing (the usual vicious circle) Thank u.
I believe very important to keep watchful eye on the ‘overall well being’ our loved ones (my son not living home). Sometimes tough love as I mention below (heading in to counsel them was in my heart risky - love or hate me for it).
Turns out they loved me for it and their depression lifted and before my eyes I can see 2 young people (couple) back on track - to true compassion for each other.
My Sons big T/Cs come on under emotional stress, we have nailed them down to this trigger, so much so I am starting to research Psychogenic seizures. Anyway, research will never stop in our house.
I can’t help stress that supplements,diet has literally changed the way he looks, he was looking like a starved child at 26, not so much in weight but in overall appearance…drained. Not now….
I also can’t help stress that therapy and bio-feedback are doing wonders for his overall well being, Ill be back on this as this is not a short road, but a road WORTH taking.
If ‘we’ knew what are destiny was, we would without hesitation stop and by 2nd nature help our loved ones (whatever the need) plagued with E or their meds – and we darn well should!
Roll on purple day…..’Let’s talk about it’ (a sweet and informative web site). I loved it, we have to start somewhere…but my saving grace and hope and in fact all of the above have come from the CWE members…….with all my heart, CWE gives hope…….thank u….with all my heart..

 

[Nakamova]

Great news, I'm glad everything is going so well!

Chaz have you also tried biofeedback or dietary changes? I only ask because you have such a wonderful attitude (wherever it comes from). I'm sure you're son and his girlfriend feel very lucky to have your support.

 

[Chaz1]

Nakamova, yes, yes for supplements and dietary changes,,,, my father (I am 47) was open to alternatives since I know, every day from I was a nipper (I am one of 6 kids) we started with spoon full of the best fish oil they could afford and a spoonful of the best honey they could afford to wash it down (honey at best quality excellent for the body),

I had a good start and I only touch on our early days. looking to what today’s diet 'does not' provide...my father was way ahead of his time, and then E hit our clan and now, we look for the potential alternatives.

Thanks to CWE, the potential alternatives are at my finger tips...no they will not work ALL but many sure worth exploring....and WILL help. I cannot express how CWE has helped my family deal with my Sons Epilepsy, considering my ‘background; I still would not/never have known how to try (better) help manage my Sons E diagnose, definitely would have been a heavier road without the honest sharing of the CWE members...

I remain humble and thankful – to CWE.

 

[Kaitybugsmom]

Thanks to CWE, the potential alternatives are at my finger tips...no they will not work ALL but many sure worth exploring....and WILL help. I cannot express how CWE has helped my family deal with my Sons Epilepsy, considering my ‘background; I still would not/never have known how to try (better) help manage my Sons E diagnose, definitely would have been a heavier road without the honest sharing of the CWE members...

I remain humble and thankful – to CWE.

:agree: I had done a bunch of reading about seizures before joining CWE. Most of the general sites just say things like triggers can be lack of sleep, diet etc. but never really go into how diet plays a potential role. Thank goodness for CWE! Such a vast wealth of knowledge! Its so nice to have so many different people telling their stories, whats worked for them, what hasnt worked for them. I know that just because doing X worked for them doesnt mean it will work for our daughter but at least its one more thing we can put in our arsenol to try and attack with.

 

[Dignan]

Sounds like we have enough people that know much more than so many docs or other "experts" I've dealt with that we could open a Patients Clinic to help those with seizures and their families to know what to look for, potential options, and what to ask different doctors.

I've always wished there was someplace I could go where they had people on hand that knew all the ramifications and potential target areas throughout the various body systems and how they were affected by seizures or by medications. When you go to a doc, they usually just throw a drug at you and often have no idea how that drug will affect areas other than the brain.

 

[Ruth]

We do have a doctor on board, here at CWE. He is going to be a neurologist. I have asked him if he is one yet. I have not heard from him, so I assume he is very busy. Look up drarvindr.

We are not allowed to give medical advice to anyone.

 

[Chaz1]

What a week on the emotional roller coaster....sorry this is a bit long, but it’s not just seizure that need to looked at; it’s the whole person, so I decided to share this.

Work told my Son that he had changed dramatically (student and works) and that his attitude had changed greatly (if only they knew). I mention earlier of the anger/frustration he was living with. He admitted that relationship frustrations had impacted his whole life (we faced that demon and they seem to be on much better track). And then his work came in to offer another blow and I could see confidence hitting an all time low...

Needed confidence boost, we went shopping and bought a new wardrobe, head to toe, and boy oh boy, the confidence oozed out of him....sometimes it’s the little things, can make all the difference and when confidence is at all time low need to address every aspect of why or what can help. I could see a spark back in his eyes, one I had missed. 1st day back on his job (after the big heavy talk) he was able to walk in proud feeling like a million dollars and instead of head hung it was head high. He did it and seizure free.
He is sleeping great these days with new sleep routine. So he asked me this week, Mum, why don’t I have seizures all the time, why only sometimes (he is reading up on E) and we talked about triggers and this time he really understood that what he does or does not do can trigger seizures, really understood. If his brain is well rested by sleep, excellent nutrition, learning to manage stress, and I have to include NFB, it is possible that these will help his brain not fire up.

He had excellent NFB session today, and they could see his brain calming itself through training…its being learnt, slowly but surely. He will have appointment with eptologist soon; they called to say he is up soon in queue. YES!

So out of the negative, comes the positive…and we must be there for those we love, because no way we letting E rob my Son of a happy life…

We back on track…12 days seizure free

 

[RobinN]

Awesome post!
Keep up the good work.

Has he had the chance to read Epilepsy: A New Approach ?

 

[epileric]

Has he had the chance to read Epilepsy: A New Approach ?

I'd take that book with a grain of salt. The suggested doses for vitamins & minerals is waaay beyond the recommended daily intake. Just for vitamin B6 they suggest 50 mg. per day when the medical community suggests that male adults take 1.7mg & females take 1.5 mg.

http://ods.od.nih.gov/factsheets/vitaminb6/

Also be aware that too much can be harmful

Toxicity

Adverse effects have only been documented from vitamin B6 supplements and never from food sources. This article only discusses the safety of the common supplemental form of vitamin B6 pyridoxine (for a full discussion please see pyridoxine). Toxicologic animal studies identify specific destruction of the dorsal root ganglia[17] which is documented in human cases of overdosage of pyridoxine.[18] Although vitamin B6 is a water-soluble vitamin and is excreted in the urine, doses of pyridoxine in excess of the RDI over long periods of time thus result in painful and ultimately irreversible neurological problems

http://en.wikipedia.org/wiki/Vitamin_B6#Toxicity

Definitely check with your doctor if anything is harmful before trying what is in that book.

 

[Nakamova]

On the other hand, the maximum suggested daily dose of B6 is 100mg. Anything higher than that needs to be discussed with your doctor/pharmacist. The Mayo clinic provides the following list with the caveat "the below doses are based on scientific research, publications, traditional use, or expert opinion.":

For anemia, 25 milligrams of vitamin B6 has been taken by mouth in combination with multivitamins from the second trimester to delivery in pregnant HIV-positive women.

For anxiety, 50 milligrams of vitamin B6 has been taken by mouth in combination with magnesium daily.

For birth outcomes, the following doses have been taken by mouth: 20 milligrams daily; three lozenges daily with 6.67 milligrams of pyridoxine in each lozenge; 2.6-20 milligrams of pyridoxine HCl daily; 25 milligrams of pyridoxine HCl daily; and a single dose of 100 milligrams.

For carpal tunnel syndrome, 200 milligrams of vitamin B6 has been taken by mouth daily for 10-12 weeks.

For cognitive function, 20 milligrams of vitamin B6 has been taken by mouth daily for 12 weeks.

For dysmenorrhea, 200 milligrams of vitamin B6 has been taken by mouth daily.

For gestational diabetes, 100 milligrams of vitamin B6 has been taken by mouth daily for 14 days.

For high blood pressure, five milligrams of vitamin B6 per kilogram of body weight has been taken by mouth daily for four weeks.

For McArdle's disease, 50 milligrams of vitamin B6 has been taken by mouth daily for 10 weeks, without evidence of benefit.

For pregnancy-induced nausea and vomiting, the following doses have been taken by mouth: 25 milligrams of vitamin B6 every eight hours for 72 hours; 10 milligrams pyridoxine HCl every eight hours for five days; and 100 milligrams of vitamin B6 daily for seven days.

For premenstrual syndrome, up to 600 milligrams has been taken by mouth; however, 100 milligrams daily has been suggested as the optimal level, due to the potential for side effects at higher doses.

 

[epileric]

True but none of those doses are recommended to help epilepsy so I would still be careful as to what they say.

 

[Nakamova]

Absolutely, proceed with caution when adding a supplement for any reason, and check with your doctor. There are certain health conditions that can aggravated by B6, and certain conditions that can be helped.

 

[Chaz1]

Robin, thank u....yes have read it and my Son is reading it at moment....I liked it, he likes it....its positive...all the info I sent him (net) yet when my Son read about seizure types in this book, something dropped and he called to say he could see a lot of himself, he was just too busy to stop and look (young people) and there it was an eye-opener and I’ll take all them that are coming our way...to make him more aware..and safe.

Epileric, thank you. We would never go by a book and I am open yet cautious...and really appreciate the warnings...because I am the one who has introduced supplements so I better be darn well sure....but I will admit, I research long time and still......so blood tests are key and critical.And we waiting 4 one, still....

Nakamova, a big sigh of relief to see the numbers...thank u.

He takes (comments welcome)
Valporic 1300mg
B complex (contains B6 10mg)
Omega 3 1500mg (has 300µg of folic acid and 3µg of vitamin B12)
Vitamin E - 200 µg
Vitamin D - 1000 µg (waiting for blood test to up this and its Spring, so want to be sure he need)

 

[RobinN]

If you are in the sun for 20-30 min your body takes in through the skin 10,000-20,000IU
Minimum we take is 5,000IU. I was listening to a doctor recently talk about the fact that zinc needs to be taken with it, and another vit, but I can't remember... I need to research what it was, just haven't had time.

 

[epileric]

. I was listening to a doctor recently talk .

I hope the "dr" you were listening to was more qualified than Dr. Mercola. I know you like him but There are many doctors like him out there that are not real "doctors" (he's only qualified as an osteopath) and who are known to give information that contradicts medical standards.

 

[Chaz1]

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

I agree Robin, just want his blood analyzed to make sure all he is taking now is doing him only good.....and if his is D low (after tests) he will go up and if low now, then would be curious what fall and winter brings..

Darn clock changing here......don’t like these changes to the bio clock...

They heading off on holiday on Monday, so out there living as he should be thank God.