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Any success with Vitamin B-12 anyone?


#1

Has anyone had any luck with Vitamin B-12 supplements?

Adam- I thought at one time they were part of a regime you were trying -any opinion on them? I have just heard them brought up again in the media, and was wondering.

I would love any feedback - if anybody has anything (good or bad) I would appreciate it.

Thanks-

Kim


#2

I take a pretty heavy B complex supplement, and it does seem to be helpful for a few hours each day.


#3

Hi Kim,
I had a remssion just after having B12 injection,
and doing a gluten free diet.
unfortunatly it lasted only 2 months.
I used a treadmill and bang! it came back.
cheers jen


#4

Jenny,

PLEASE define your “remission” after a B12 injection!!! Did all the wacky movement go away? Like falling thru or off the bed? Daily dizziness and vertigo?

Did you have tests to show that you were deficient?

I recently found test results from nearly 4 years ago… right after my symptoms started… that showed that I was on the LOW end of normal. Going to have that checked out again because just reading about a B12 deficiency covers some of the various, and what I thought was totally non-related, symptoms. Maybe my level got lower, esp since I was on birth control.

Just wondering how you did after the B12 injection. May I ask… why haven’t you gotten another one if remission soon followed?? How soon after???

Thanks,

DJ


#5

Hi DJ, well you see it’s been a wacky ride for me,
I’ve never had true spinning vertigo,
Mine is like mal de debarquement rocking.

Up until a year ago I didn’t have obvious visual aura, only (mood changes) ect
Everything just looked as if it was rocking, or rotating slowly
Ent said normal with mdds,

I had double vision, greyish colour changes
Optometrist said, just an over 40 thing,

I had very bad constipation type (IBS),and felt there could be some correlation ,
if the bowel wasn’t working right you could be vitamin deficient and that some people with celiac or gluten intolerant could have the same symptoms
so I went gluten free and had my blood check for b12 deficiency
Which was just below normal, but doc said nothing to worry about,
I bought the b12 from a chemist and put it down on his desk and insisted he give it to me,
I believe the gluten free diet helped me, and the b12 just topped it off,

By the way there is very strong evidence that a gluten free diet helps many epileptics live a seizure free life,
Since epileptics have the neuron going crazy I figured it couldn’t hurt.
With in 2 months on the gluten free diet and injections every 4-weeks, I whent into remssion,just disappeared one morning,

all blood test for celiac were negative,
So since I was feeling better I gave up the gluten free diet and stopped having b12 injections and started taking multi vits and sublingual b12, My Dr who originally wanted to help me find my cure had moved away, so I stopped have b12 injections, ect

My cousin came to stay for a week,
we sat up late every night drinking red wine, I was exhausted, and bang! The rocking came back.

End of last year the visual aura became very prominent.
I’d never understood what it was, explained it to a mal de debarquement forum leader she is an RN, she said oh jen that might be mav, what your seeing is aura,
So I saw a neuro, and he confirmed this.

So at 1st < I believed I had celiac . not so
not long after visaul aura got wrse diagnosed mav,
I still find taking b12 and other vits like magnesium I have less migrianes.
these vitamins have to be high doses Dj.
allso a lady from the mal de debarquement forum , went to her neuro , he did a b12 check and found she was very low in b12 and he said omg and gave her a shot in his office with in 24 hours hshe had stopped rocking, and went into remission, so yes low b12 can cause these symptoms .

I hope Ive answerd your questions, sorry for going on,
all the best jen.


#6

jen, please go on and on and on and on. i want to learn SOOOOO much about mav, mdd, whatever. i am searching as hard as i can for some relief from chronic motion. never do i get a break, and it has taken a huge toll on my life, just like most on this forum aren’t “living” like they used to. that info on the B12 is music to my ears. don’t know if i am grasping at straws or what, but having a little more blood work and urinating in a cup to check B12 levels (plus the other stuff that should be checked with it) is NOTHING compared to everything else i have been through and what i may be doing in the future. in less than 2 weeks i am having wires stuck in my heart… what if it was a vitamin deficiency instead of a heart problem? i will have the test anyway, but when it shows nothing… maybe it will be bc of the low B12. i’m not sure why my neurologist didn’t persue this 4 years ago. my B2 level was WAY low too. gonna get that checked again.

my turn for going on and on… just looking into every alternative.

THANK YOU SO MUCH JEN FOR THE INFO! BLESS YOU!

dj


#7

Your so welcome, dont worry I’m also been reseaching my heart out for the past 2 years so I understand,
but I dont think being on this computor as much as we are is helping our migrianes.
oh well,
jen


#8

Dj, You could start out here, jccglutenfree.googlepages.com/diagnostictesting


#9

jenny,

already printed out info from that page today. was great info!

i think i fit MDD along with having visual migraines myself… but i have never been on a cruise, wasn’t on a boat any time near when my symptoms started, never fly… but i did ride an elevator several times a day and slept in a water bed on the weekends for over a year prior to when my symptoms started and had to stop sleeping in it after my symptoms started, so maybe???

i always feel better RIDING. when we stop, that is a different story. i’d rather pace and eat standing up than sitting down. laying in the bed, well i told you, turn tilt flip fall… all the time.

the problem was chronic at first, but i took ativan for 2 years. that helped it alot. then i decided to get off the ativan and everything was a million times worse and just gets worse as the days go on instead of better. now that i’m off the vestibular suppressants i would think my brain would try to get better, but maybe i suppressed everything for toooo long and i will never be able to recover.

tonight i have been looking up plenty on MDD, which i had previously, and all the symptoms seem to fit, other than never riding in a plane or being on a boat.

i pray the B12 will help… the lady you know really had MDD and 24 hours after the shot, her rocking went away??? i PRAY that happens for me! i can probably get my dr to give me a shot regardless of what the bloodwork shows. can’t hurt other than the pain from the needle and that is no biggie compared to what i feel like every day!

thanks for the info - keep it coming!

dj


#10

I pray that it helps you too, DJ - keep us posted,

Julie


#11

Hey Dj ,
I suppose it couldnt hurt getting a shot a month,
It did give me more energy.
good luck and god bless.


#12

Given that the cause of MdDS is unknown and there is no treatment, it seems as though it is quite a useless diagnosis.

Given that the sensations MdDS’ers experience are common in MAV and it can be treated, it would seem crazy not to try migraine treatment.

I wonder how many of them would admit to migraine symptoms prior to the onset of MdDS.


#13

I’ve been talking to them about this, over the 2 years I’d been visiting the mdds site, I’d talked to them about that ,the diagnosis of mdds, and from the very beginning said , that this is only a name for (too hard basket) we should be looking at other areas.
So annoying, Since my diagnosis I’ve been asking them about migraine, family history ect ,
Over the past 2 years they have compiled symptoms surveys and geographic ect.
I’ve asked them to add family history of migraine, as many in the group do have migraine, but due to Dr Haines out dated files, many believe mav means no head pain.
I’ve just sent them some info and will continue to,
One of the forum leaders, Marla Is a retired ER nurse, due to her mdds.
She believes like some others that mdds is possibly a form of migraine.
And the mddsers do try many different drugs,
I pointed out to them that the drugs that to work for Mdds are normally the drugs that work for migrianeurs.
The problem is Adam, until they have a diagnosis; we find a drug and don’t stick it out, if symptoms become worse at first. Any drug takes time, as you well know.
I do believe the medical profession, had become complacent.
They can’t find a diagnosis in their chosen field and send people home with this faulse diagnosis of mdds.
You see from the time I said enough is enough, and became my own doc. things started falling into place.
warm regards, jen
happy new year Adam


#14

Hi Jenny

That’s good to hear. We definitely don’t have all the answers yet, and indeed still seem a long way away from finding the root cause of these dizziness symptoms - but its so hard when the diagnosis is a ‘sit and wait’ one. At least if you suspect MAV early and have a go at treatment, you have very little to lose. MdDS may well be unrelated to migraine, but the symptoms are so similar… so I find it hard to imagine how they just sit and wait!

I’d think most people who are really dizzy would be willing to do anything (within reason) to feel better :slight_smile:

Happy new year
Adam


#15

I agree with Adam that the symptoms of mal de disembarkment, and MAV are almost identical. Personally, motion triggers my dizziness: sailing, using a treadmill, using an elevator, etc. And I’m diagnosed with MAV on top of nerve damage. So, I have three simultaneous vertigo diagnoses: MAV, vestibular hypofunction and mal de disembarkment. Rehab was of no value, and medication and diet have helped. I avoid the movement triggers: which is too bad, because I love to sail. No one can visualize the temporal bone and the vestibular system: so all vertigo diagnoses are by inference–clinical history, results on ENG/balance testing, audiograms.
I don’t see the point of not treating a disabling condition.
RE: B12, it can be replaced orally: 1000 to 2000 mg daily will replete a deficient patient. There’s no need for shots.
Chronic vertigo is frustrating to both physicians and patients, because firm diagnosis are often difficult, and treatment is difficult as well.
I agree with Adam, that since it’s so miserable to be dizzy, most of us will try anything.
Kira


#16

I would like to respectfully disagree that oral supplementation may not fix B12 deficiencies in all patients. Some people have other problems in their body, that likely led to the B12 deficiency, that will not allow their body to absorb what is needed through supplements. Hence, injections. They also work faster in getting levels back up. However, I do think that patients who get shots ALSO need to take B12 orally, in the methyl form, to make sure the levels do not drop too drastically in between injections.

I think the correlation between migraine and/or MAV and MDD is a strong one. From what little reading I have done on MDD, I would think that people with MAV or any form of migraine really would be a good reason why MDD developed in them.

Jen, I joined the MDD forum as well. I KNOW I have a migraine of some sort, DXed with “some form of a migraine” as one doctor likes to call it, I have visual auras and rarely headaches, but my doctors and I know I have a migraine variant and I have had that for at least 5 years. Jen, I’ll try to email you from the other forum cause I have some questions since you are more well-read on MDD than I am.

And Jen, please at least get some methyl B12 supplements and take them every day - or two or three times a day - PLEASE! - since you once got relief. Thanks girl!


#17

Dj, I did think it was just one of those Coincidences at the time, it’s funny how we do things and try other things and forget, I’ll start gong back to the gp for shots, I do take subling tabs now. every day with co enzym 10.

thanks Dj
jen


#18

when I take sublingual B12 (methyl) I get electric shocks in my legs - just an interesting aside.


#19

I don’t have a depleted level of b12 I’m just trying to find something to help with the fatigue. What dosages have people been recommended? I got some sublingual b12 from the store (5,000mcg pills was their max) as that’s easier than going to doctor’s for a shot though I’m open to it.


#20

I knkw I’m responding to threads over 10 years old on here, but I’ve found that B12 makes me feel worse every time I have it. So I’ve stopped it. Yesterday I took some, and have done so in the past and it just brings on the disequilibrium and the moving floor sensation. And also those trance like spasms. Awful.