Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

VITAMINS suggested by our Neurologist...

My son's Neurologist suggested these vitamins to help with memory, concentration, over-all brain function, healing and energy (His Topamax makes him VERY tired!).  He also has "Ice-Pick" Migraines.  The vitamins have really made a difference in all areas, and I would like to share them with anyone who is interested. 

I would also love to hear what vitamins others are taking and the results you've had...

 

***Please don't start taking vitamins before you talk with your Neurologist***

 

Omega 3 Fish Oil, with high EPA and DHA

Magnesium Oxide- 250 mg per day (pm)

Multi Vitamin (am), which includes L-Optizinc- 30 mg

 

 

Comments

Re: VITAMINS suggested by our Neurologist...

Hi

 in Thailand, after a seizure, was given high dose multi-B (B3, B6, B12). Currently in the UK my doc said they were a waste of time - then a week later after blood tests put me on B9 (better known as folic acid). So ignored his previous advice and am on a mixture of B's. I figured the reason the B levels were OK was precisely because I was taking supplements, wereas I was not taking B9 tablets.

 

Rych 

Re: VITAMINS suggested by our Neurologist...

My neuro has me taking B6 and Folic Acid.  The B6 is to help with the Keppra-rage and the folic acid is something he has all females of child bearing age take along with seizure meds.

Re: VITAMINS suggested by our Neurologist...

Keppra-rage?  So B6 also helps with emotional issues? 

Re: VITAMINS suggested by our Neurologist...

Keppra is notorious for causing anger/irritability.  The B6 is mainly to help equalize the brain chemistry if I am not mistaken.  My neuro just mentioned that it would also keep the Keppra-rage away.

Re: VITAMINS suggested by our Neurologist...

I'd also go with more of the B then just B6, B12 etc as they are all beneficial. I get discount vitamins online since having enough each month and buying them local is far to expensive.

Re: VITAMINS suggested by our Neurologist...

I would be interetsed in talking more with you about this. We are researching vitamins for our son. Email me at curtis.wybourn@qbeamericas.com

My son has developed acid reflux and we are starting him on Aloe Vera juice to help with that. Certified nutrition said to also give him the chilrens emergen c. has all the vitiamins a child needs. He is also on Keppra. 250 mg in am and 500 mg at night.

Thanks,

Curt

Re: VITAMINS suggested by our Neurologist...

I would like to talk more about this too.  My son (16) is starting to have some side effects on Topamax since we are still increasing it.  My neuro has never mentioned vitamins or supplements to us.

 Feel free to email me off line..

ckolonick@sbcglobal.net

 

Re: VITAMINS suggested by our Neurologist...

Hello there,

I am glad to hear that your son is feeling much better after taking the vitamins!
I have been on Topamax for around 8 months now, and have really struggled with this medication.
I have begged with my neurologist to take me off it several times, as the side effects for me personally have been horrid.

Anyhoo...a few weeks ago I bought a great multivitamin with Selenium, and a vitamin B tablet. I also take fish oil daily.
I have also found drinking a high quality protein shake with blueberries, bananas, and yoghurt have been fantastic too.
I eat a lot of high protein foods now, and lots of fresh fruit, veg, and fish.
I can't tell express how much this has helped me!! and I have even gained weight, which was needed!
My skin is looking a lot better, and the side-effects are almost all gone....yippee!!!!
I find if I get lazy and skip on my diet or vitamins, the Topamax side-effects come back to haunt me!

Hope this helps!
Take care
Summer

Re: VITAMINS suggested by our Neurologist...

I too had ALOT of trouble with Tomapax, I just couldn't funtion at all. I was switched to Tegretol (300MG daily) and I have had no side effects! The stuff is great, maybe ask your doctor about that. Seriously, Tomapax is evil...

The only thing with the Tegretol is that you have to be careful if you are also taking an anti-depressent. I take Elivil to help me sleep, but I'm at 15MG, which basically does nothing, but its a safe amount. I think it does help me sleep just for the fact that I know I'm taking 'something'.

Vitamins & Seizures

I Have been using vitamin B6 for over 37 years to control my seizures Here is my story:

http://www.epilepsyforum.org.uk/viewtopic.php?t=14802

Do not alter any medication without your doctor's consent.

Regards,

Andrew

Re: Vitamins & Seizures

you have not had any seizures for all thoes years are you still on meds

Re: Vitamins & Seizures

Hi all,

I have now been using vitamin B6 to control my seizures for over 38 years.  My seizure medication now consists of B vitamins only.  In over 38 years I have never used any anti-epileptic drugs with my B vitamin to control my seizures.

My story and some interesting links can now be found at the following URL:

http://brain.hastypastry.net/forums/showthread.php?t=36549

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Vitamins may interfere with some anti-epileptic drugs.

http://www.epilepsy.org.uk/info/women/folicacid

http://www.epilepsy.org.uk/about/positionstatements/folicacid.html

A high dose of vitamin B6 may cause Peripheral Neuropathy.

Regards

Andrew

Re: Vitamins & Seizures

My 16 yr old is diagnosed with LGS and we recently added B6.  The change in him is amazing!  His EEG has an extremely slow background and we tried this to improve his quality of life.  It's working!!!  Then we added Onfi and are titrating off of Banzel and Dilantin...(in process now)...the change has been dramatic!  Its nice to see when his seizures have controlled most of his life.

Now in PA there is a problem getting Onfi.  If you know anyone in PA on this wonderful drug please pass on my petition to change the code and get it available again!

 https://www.change.org/petitions/don-t-take-matt-s-chance-at-life-away

 

Re: VITAMINS suggested by our Neurologist...

I don't eat right, I probably shouldn't drink as much liquid as I do. Often times, I drink Coke and iced tea, and feel full even though I haven't eaten that much and then start skipping meals. I'm going to add a protien shake in the morning with breakfast and one later in the day if I feel hungry between meals. I know I don't eat right, and not eating right can lead to seizures for me. I eat plenty of red meat, so I know I don't have a real problem with protien in my diet. I probably should eat more fish too.

Re: VITAMINS suggested by our Neurologist...

I've recently started taking vitamin and mineral supplements.

Good luck to you and your son, I'll keep tabs with you to see how you're getting on, and I'll let you know how I get on too xx

Re: VITAMINS suggested by our Neurologist...

i don't have experience with any of these suppliments other than folic acid, which women of child bearing age should take b/c a lack of it very early on in a pregnancy can cause spina bifida.  BUT i wanted to add the fact that my neuro highly recommened that i take a calcium suppliment since some AEDs can cause a decrease in bone density which can have really bad long term effects.  calcium has no anti-seizure benefit, but it can help with the long term med side-effects.  so i take calcium everyday to hopefully protect my bones in the future.

good luck and keep us updated!  i am willing to try anything that can help!

kat

Re: VITAMINS suggested by our Neurologist...

My Neuro suggested I take Calcium and Vitamin D saying that some AEDs decrease bone density.  In that I am in my mid-40s and a woman.. figured it couldn't hurt in that I am Lactose Intolerant anyhow and do not get a lot of calcium, if any, in my daily diet.  So, I take that in a combo form.

I do take Fish Oil with those components in it as well.  This was suggested by another specialist I see for something else.

I find that I can tell a difference, in the other area of issue I have, when I miss any doses of this.  I also believe that having this along with my AED has helped my seizures as well. 

The Fish Oil wasn't suggested by my Neuro.

I take lamictal which thus

I take lamictal which thus far has worked the best. When I first started taking keppra they had me on 3000mg and which is way to much to begin with and I slept 16 hrs a day. The medicine made me extremely tired and miserable. 

I am so happy to see this

I am so happy to see this post! I am 23, haven't had a seizure (grand mal) in 4 years due to my switch to Topamax and Kepra. I feel my Topamax dumbs down my vocabulary, i've always thought that unfortunately, since 16. But it is worth the bonus of no seizures. It makes me very sleepy as well, taking one in the morning and 2 at night, but i also take Adderal 30mg for my adhd. My doctor has never recommended any vitamins, so I've taken it upon myself to try some on my own. Not good, I know, but my neurologist is a Hi- Bye kind of doctor. Vitamin D gives me unbearable heartburn. I am scared to try anything else at the moment, but I am a very skinny, always cold person and I know i should take vitamins.

Thank you for that info that

Thank you for that info that puts me at ease for my grandson

Your comment stood out to me

Your comment stood out to me the most, i too am on the same medications, (topamax and Keppra) they do seem to help a bit, but since my first seizure when i was 8... the meds have been slowing down my thinking and throws off my balance a great deal and at the age of only 22. I would try to get other opinions from doctors and see what other routes to take before other symptoms occur that aren't wanted. 

I have done a lot of research

I have done a lot of research about seizures and the best vitamin for the condition. More often that not I keep reading about Vitamin B6 being the best vitamin one can take to eliminate them. 

Yes.. I was not born with

Yes.. I was not born with seizures I started 20 years ago with a Grandma seizure and now I'm having the quiet seizures, but when about one I can feel that it is coming on aaaaah I tried to hold a job, but I had to stop working I sits at home everyday depressed but I keep God first, because I have came along way and I am BLESSED

When I moved from my.old

When I moved from my.old doctors I was so frustrated as he said we will give you B12 injection once a month because we are going to start you early as people with epilesy have problems with there organs and bones later in life it felt it was lifting me up.When I moved Drs they stopped letting me have these as they said I don't need them  I tried looking for this myself the first dr said the tablet that break up and is a waist of time 

Can I ask what brand these

Can I ask what brand these products are?  I have tried so many different brands for my son.  I am finding out he has such a fast metabolism that the vitamins increase it even more which metabolizes his medicine in his system too fast.  Yesterday I started him on B12 and this morning he had a terrible seizure at the time of his morning dose of medicine.  I have eliminated anything that contains herbs in the formulas but its hard to find plain multi vitamins.  Ready to give up on vitamins but I know he needs supplementation.  We switched to a new neurologist and need to get his thoughts on supplements.  Our old neurologist said he can take them but there is always an issue after we start taking them.

My neurologist doesn't want

My neurologist doesn't want to talk about the notion of using vitamins as supplements for the medication I take for my seizures, so I go out on my own. Back in the 80's I read a book about epilepsy and the doctor mentioned using Vitamin B6 and Magnesium although they were primarily successful when used by children. I was about 30 but thought I'd try anyway. The guy at the store said taking B-complex at the same time would help break up and dissolve the B6 so it would get into my system better. After taking them for about a year or two I was able to drop the dilantin I was taking. After a couple medicine-changes later I basically stopped using them.However, now, having gone 13 years seizure-free after a lumpectomy surgical procedureI in 2005, they have started up again. So I thought I would start the vitamins and minerals again. Now I take B6 100mg, B-complex, Magnesium 400mg, Calcium 1000mg, Zinc 15mg, and Manganese 50mg.My only problem is that the Calcium and Magnesium say I should take 3 a day. I assume that's for people who have low calcium or magnesium levels but I'm not sure if I need a similar dosage for seizures. If it can affect medication, the seizures medication I currently take are Lamotrigine150mg 2X daily; Fycompa 10mg 1X daily; Zonisimide 100mg 5X daily and Vimpat 200mg 2X daily.If anyone can help or has knowledge about the specifics of the dosages or the effects on my current meds - if any, I would greatly appreciate it. Thanks in advance.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline