Vit B12 - age of reseach literature

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DavidL

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Does anyone know what age the research linking Dilantin to vit B12 absorption issues - in other words, how far back it goes? Or would anyone know of any resources where I could find out for myself?
 
Hi, I can't answer your question. However I can tell that I have been. on Dilantin since 1972--except for abou t8 months that Dr. tried me on MANY MANY other meds.
Dilantin and Clonazepam are the only 2 meds. that have my seiz. under control (for the mosT part)
It was 2010 ( I THINK) when I became -B-12 deficient.
I had HORRABLE drug induce rage when I took the B-12 shots. I NOW have my vit. B6,B12,frolic acid,Vit.D, calecium, Prozac all done at a compound Phare.

I didn't know any about compounding until I joined this forum.

I hope this helps you in some way.
 
Thank you for your reply. Two questions, if you don't mind:

Had your doctor been monitoring your B12 levels from the beginning?

Had your doctor informed you, and were you aware, of the potential side effects of dilantin in relation to your personality - ie depression, anxiety, suicidal etc?

THanks.
 
DavidL said:
Thank you for your reply. Two questions, if you don't mind:

Had your doctor been monitoring your B12 levels from the beginning?

Had your doctor informed you, and were you aware, of the potential side effects of dilantin in relation to your personality - ie depression, anxiety, suicidal etc?

THanks.
Click to expand...

No to the 1st. question, None of the Neur. EVER mention B12 to me. It was when I couldn't get out of bed, much less do anything that I make appt. with Dr.

No again to the second question, I would tell each Neur. that I felt depressed, sad, fearful. They looked at me like what is your problem.
I've always had anxiety but never related it to my E.
I have TLE E. from the right side of my brain.
 
jyearta said:
No to the 1st. question, None of the Neur. EVER mention B12 to me. It was when I couldn't get out of bed, much less do anything that I make appt. with Dr.

No again to the second question, I would tell each Neur. that I felt depressed, sad, fearful. They looked at me like what is your problem.
I've always had anxiety but never related it to my E.
I have TLE E. from the right side of my brain.
Click to expand...

Have you consulted with malpractice lawyers?

How long were you experiencing the emotional symptoms? How are you coping?

I have temporal lobe on right side also. Grand mal, since I was 13. Was placed on 500mg of Dilantin when I was 14. The neurologist did not inform me of the potential side-effects, nor did he do any inquiry as to my emotional state. My entire life to this point (47) has been severely restricted due to chronic depression, anxiety, hypersensitivity, very low self-esteem (thinking I was just really weak and pathetic) among other symptoms. In all I worked with around 8 doctors who were all clueless - including the so-called *expert* neurologist who treated the seizures.

Just recently, when finding a new family physician, did I discover a significant B12 deficiency (half of minimal range). Now I am discovering the relation between B12 and Dilantin.

I am just beginning to discover this. All my life I thought I was just weak, messed up psychologically. Unsupportive and abused background and all that. This was only reinforced by psychologists and counsellors who either wanted to explore my childhood or thought I was basically lacking in character. Not one of them had anything to say about the drug I was on!!!! Talk about paradigm bias!!! But since beginning B12 treatment I have begun to notice a marked improvement in mood and energy and personality.

I suspect this is going to stir some rage in me the more it sinks in. I will be consulting with malpractice lawyers to discover legal options. I don't have much expectation. I don't know how I will be able to cope with this. I have been just numb since learning about it.
 
It's a good idea to ask your neuro about any med that you take, even if it's pescribed by another dr, because it could cause you to have seizures. I've done this before and when I went to my neuro visit he told me that med was probably causing the seizures at that time. Not all drs know what could bring on a seizure when you mix it with an epilepsy med.

My dr recently pescribed me steroids for another problem I was having and while taking them I was having seizures. When I was done with the dosage my dr wanted to give me more but I told him that I wanted to ask my neuro first. He told me that steroids could cause seizures.

I started taking B6 (I think that's what it was becaues I have pretty bad Kepprage and heard it helped with that) on my own without my neuro pescribing it to me. I started having seizures like crazy while on it. I know other people don't have problems with it so it may just only be me that couldn't deal with it.
 
WOW, thank you for posting. I have studied material on the stuff I take and do not believe the Docs or the FDA for safety. I use herbs and vitamins everyday and keep researching. The docs make money for writing more scripts so that is the motive, not knowledge for help.
 
PS. I find it helpful to cross-reference and ask around for different opinions before I have decided which belief/latest study I may chose to hold on to.
 
I hope I'm correct on say this....that all the seizures meds. taken over a long period of time causes our bodies unable to absorb the Vit. that bodies need. Add to that as we age, our bodies don't again don't absorb the bits.
 
Do you take anything for heartburn? I ask this because I was taking something for heartburn and then learned that this causes B-12 levels to drop. Here again a Dr.didn't tell me to watch how much I was taking.

My B-12 level got as low as 211.
 
What were you taking for heartburn? I assume it was something in pill form.

I eat tums like they are candy. I tell myself I get enough calcium this way… but who knows. I did start taking vitamin D so I could absorbed more of the calcium in the tums. I also read that antacids can have a negative effect on the bodies ability to absorb Dilantin.

Between Lamictal, Keppra and Dilantin, I’m sure my vitamin levels are out of whack, but I have also heard horror stories of people who have taken to many vitamins. I wish there was an easy way to monitor their levels…. Maybe in another 100 year, or even better, maybe they’ll have a cure for E by then (if epilepsy research actually gets some funding).
 
I took Gaviscon extra strength. I was taking it as if it was candy, trying to keep the heartburn away.

How I only take one tablet ONLY as needed, and I eat an apple at night and drink plenty of water.

Has I've said early I have my vitamins compounded.
 
Dilantin is a horrible medicine. I am suing a doctor for almost killing me with it. Yes, it might control your seizures, but the long-tem effects can be rotten. Try something else, please. I have been on 15 medicines in 14 years, and I speak from experience when I say that Dilantin was the worst. I quit taking it a month ago and STILL feel the effects. I now need glasses, and I has to take a semester off from school because of the damage. PLEASE, talk to you doctor about alternatives.
 
I appreciate what you are saying,but the Dr. have tried all the other medic. out there and either I had more seizures are the side effects were so BAD I couldn't tolerate them.
I feel the same about Keppra as you do with Dilantin.

Please don't take this as if I don't appreciate you concern.
 
i was told i had low b12 but about four people that week presented with low b12 so hospital changed their goal posts and now i classed in normal range but if the other people had not had theirs done that week i would be having treatment....i feel like sh1t so i got sublingual b12 and it do help me feel little less like sh1t....i had no idea e treatment could effect b12 levels and i dont think my gp do either...so after reading these posts i going to have chat with dr about tests
 
I know I have damage from Dilantin from years ago, bone loss and quite receded gums for a healthy 43 year old. I do not know if keppra is doing it too! But I research my own health and use herbs and vitamins and diet to treat my problems. I do not know about the UK but in the States, medical schools have rare, and optional nutrition classes. It is clear that pharmacology money and insurance companies fund all that ;so lucky we have others others to talk with and free info about alternative treatments. (but pay cash for those treatments.) And be sure to cross reference and talk to different people as you research so you know what is safe for you. Here is also a great place to compare notes with others. B12 is amazing, I am working on why does B-complex give me head-aches? Is it one of the B vites that does it? I am vegetarian so I should be having B12 supplements. And I only have raw milk for dairy so that I get all the enzymes and full calcium. Is that weird? My motto is "eat more fruit!"
 
PS there are lots of adverse effects from heartburn pills, Try munching on a celery stick. I tried it and just a few bites work like a miracle! And it has other great stuff for your body.
 
I was told I needed frolic acid also, I don't know if the frolic acid helps in absorbing B-12. I wish I could remember things.
 
re Dilantin - my understanding is that everyone will have a different reaction. There seems to be a broad range of possible side-effects.

In a recent discussion with my neurologist he stated that Dilantin will not cause behavioral side-effects. He seemed a bit confused on this point because he also stated that a drug designed to alter brain activity and chemistry will *of course* have potential side-effects on behaviour and mood. I could not pin him down further on how he lived with this contradiction. We also know that Dilantin can interfere with B12. Deficient B12 has high potential for altering mood and personality. So again, ...???

He also allowed that having epilepsy could alter behaviour and mood, as has been documented (my research) since the 19th century. He even showed me a book off his office bookshelf on the topic. Yet, not once, since I was put in his care at age 14, did he ever inquire about unusual mood or behavioral issues. In his view it would be rare for such a thing to exist.

All I know is that, as sceptical as I am re the effectiveness of supplementation, I notice significant change in mood and behaviour after receiving an injection. I also notice when I need another shot, as I revert to the really uncomfortable edgy, jumpy feeling I've had since my teens. I started out monthly shots, since moved to biweekly, and now am around the 10 day mark.

Am really disappointed with my neurologist. He's a nice guy. But he did little other than avoid admitting potential error and provide me with contradictions.

And if I hadnt found a new family physician who is actually bothered to test for B12 deficiency, I would still be in the semi-zombie state I have been in for a good deal of my life. And I suppose I have to realize that I am one of the luckier ones.
 
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