wow very hopeful.. vitamin B12

[Tracy-Lynn]

Hi there, Ive been away for a bit.. i hope that some of you will remember my story. I have simple partial seizures, and complex partial seizures that seem to break through when im about to have my period.. I also have noctunal seizures during my sleep transition from wakefulness to sleep, (which actually it has been speculated that this could also be narcolepsy).. I am unmedicated,
After months and months of doctors, neurologist's, a rheumatologist and a cardiologist and what seems like billions of tests... i asked my gp for a B12 test because of something i read.. Anyhow, my test came back with me being deficient in b12. Doctor prescribed B12 by injection 1x per week, for awhile, then i can go to every 2 weeks and then hopefully once a month..its not clear if i will need to do this forever. The doctor called this pernicious anemia. I have had 2 injections.
I have been seizure free for 6 days.
Does anyone know anything about this?? am i being too hopeful?

[epileric]

Good luck with the B12. My grandfather had Pernicious Anemia but my family told me it would have nothing to do with my seizures. Now that you bring it up I'm going to ask my neurologist about it at my next visit. He'd probably know more than they do. I'd be thrilled to just need B12 instead of large amounts of Tegretol.

Keep us updated on whether it helps your seizures or not.

[Bernard]

B12 is a critical vitamin. Zoe posted some information about it's connection to homocysteine and the connection to seizure thresholds:

Vitamin B12

[Nakamova]

Hi Tracy-Lynn --

That's great -- I hope the B12 injections do the trick!

Just out of curiosity, do you know of any particular cause for your B12 deficiency? It's a complicated vitamin in terms of absorption and activation. The link below has more info:

http://www.westonaprice.org/basicnut...itaminb12.html

Best,
Nakamova

[RobinN]

B12 has been found to be helpful for children with other neurological disorders. Stan Kurtz was the first one to bring this to my attention.

http://stankurtz.com/biomedical/mb12...y-summary.html

[Tracy-Lynn]

Yes I am fairly certain that i do know what caused this. I was having some tummy trouble for awhile. My GP asked me to do a breath test for helicobacter Pylori.. a bacteria that sometimes we can get in our stomachs, it also causes ulcers. I tested positive for this. For 2 weeks I took a combination drug therapy to eradicate this bacteria. Amoxicillin, Biaxin, and Prevacid. Helicobacter pylori can damage your stomach alot, destroy your mucosa, which in turn destroyed something called Intrinsic factor for me, which we need apparently to absorb B12. The doctor is fairly sure this caused my problem..
Anyhow, I was seizure free until lat night at bedtime.. im only 2 injections in, so we'll see what happens, but im hopeful because it seems to have cut them down hugely.. Tommorrow I have my appointment at VGH Epilepsy clinic, so I will definately discuss this with them. It seems like alot of doctors aren't so ecducated when it comes to vitamins and minerals and that kinda thing.. im not sure what the reason for that is..

[RobinN]

What have you done in addition TL, to heal your intestinal tract? Have you changed your nutritional intake to eliminate yeast, caused by the antibiotics, and or increased biotin or added probiotics?

[epileric]

Tommorrow I have my appointment at VGH Epilepsy clinic, so I will definately discuss this with them. .

in 99 I went to the VGH E clinic for observation. After 39 years they were the only people to discover what was causing my seizures. Good luck with your appointment.

[Tracy-Lynn]

I havent done anything else yet as far as healing my intestinal tract, only because i dont know much about it.. but i'd like to. And I really hope at theVGH E clinic they will be able to help me.. finally..ive been waiting a month for these appointments.

For people who have tummy troubles, get tested for H. Pylori.. its a simple breath test. If i had not had the test I would be none the wiser today.. H Pylori is so damaging.. i didnt even know what it was. Apparently its not a rare thing at all.

[RobinN]

Don't be surprised if they do not have knowledge that gut issues cause brain disorders.

[loving life]

Tracy-Lynn,

I have had seizures for about 25 yrs now and yes, I have had positive results taking B12. I notice changes in how my body responds to it (the same day).

As far as the injections go - no I have not had experience with that.

Other things that have helped me when I feel more prone to the onset of seizures:

1. I eat 1 can of black olives.

...and/or

2. I eat 1-2 avacadoes.

3. SLEEP! I sleep late in the mornings, or take a cat nap that day.

I know some of these 3 things sound a little unconventional, but I have been dealing with very serious seizures through out my life, and I have learned to control them. Charting foods I eat, times, dates, sleep, etc have helped me to pinpoint triggers.

One other thing that is a severe trigger for me is man-made sugars. 1 stick of gum and soon will notice a difference in the way I feel.

Even though I take my meds daily, I notice a difference in the way the above mentioned affect my body.

This may not be the case for everyone with epilepsy and complex seizures, but it works for me.

Good Luck and keep us posted on the B12 results.

[epileric]

1. I eat 1 can of black olives.

...and/or

2. I eat 1-2 avacadoes.

3. SLEEP! I sleep late in the mornings, or take a cat nap that day.

Welcome to the site loving life. I don't know about the olives but the avocados sounds like your body is in need of essential fatty acids. have you tried taking them regularly as a supplement?

[loving life]

I wasn't aware of that...but I will give it a try.

Thanks

[Nakamova]

Actually olives & olive oil also have fats that are great for the brain. And avocadoes have potassium which has a role in regulating brain firing. So your body is telling you what you need! Good for you for listening.

[RobinN]

Interesting ... as Rebecca has been healing she has been eating a lot of avocados. It has become a staple for her.

It is interesting when you are in tune with your body, how it can tell you what you need.

I do believe in rotation of foods though, and would like to learn more about how to achieve it. We tend to have our favorites and stick with them.

Loving life, I appreciate you taking to the time to share what works for you. It is my opinion that the more people that do this, the better off we will all be.

[Tracy-Lynn]

Wow,, there's so many great ideas on here.. thank you everyone for sharing. I had my EEG yesterday at VGH..
Are narcolepsy and epilepsy often confused or intermingled?? some have formed a viewpoint that what is happenning to me seems more like narcolepsy... and yet again we are still not sure... but i do see the neurologist on Wed.. so we'll see what she says i suppose.

[Nakamova]

Epilepsy and narcolepsy can have similar components (waking dreams, involuntary movements, etc.) and sometimes people do have both. If narcolepsy is suspected, I think they can test for it using observational sleep studies, and also by checking for markers in the cerebrospinal fluid via a lumbar puncture (spinal tap). There is often a genetic component too -- do you know if other folks in your family have had something similar going on?

I don't know if those diagnostic tests are definitive, though. Talk about it with your neurologist, she should be able to give you the full picture.

Best,
Nakamova

[RobinN]

Try to understand that these are labels. They are labels for symptoms, and those symptoms are due to a cause. Finding out why, is more important than finding the name.
IMO
Doctors treat symptoms, not the cause. I hope that you can find the cause and move toward health.

[Tracy-Lynn]

That is so true... actually i really dont care what it is I just want it to stop..like im sure we all do.. this has been a living nightmare...its just that if they cant put a name on it then its nothing.. but its not nothing... its definately something.. otherwise i wouldnt be there.. for nothing..

[Nakamova]

Yes I think the "not knowing" is a hard component of epilepsy -- not knowing where it came from/why it happens/when it wil happen again/what will treat it/how the treatment will help, how the treatment will help...