Seems to give some insight into why B12 might work…
As I am in the 100,000Genomes Project it may throw this up in my DNA, I am waiting for the results and will post here if there is a genetic link.
Very interesting. Oh would that SOMEBODY would do research and get things sorted. Think this might be something for those Functional Medicine Doctors to find from researching. Maybe @Jen could come in here. In UK NHS doctors dont want to spend on checking B12 level even, say results inconclusive so they either give injections where they may be unnecessary or just refuse. They only want to treat symptoms, not find solutions. Very frustrating,
I wonder about Vitamin D. I took tablets, prescribed for another condition, 2 weeks to reach target dose (so med sensitive, tirating vitamins, me) and BANG first full on migraine attack since medicated. Coincidence? I think not.
Interesting as I just brought this up a bit in another post with someone. Be carful with high doses of methylated vitamins, they can really make you feel weird and could be triggers. Start at low doses and work up.
You;ll hv to enlighten me here. No nothing of ‘methylated’ vitamins. Mine came from doctor. How would I know? I took them, starting slow and low and BANG MAV hit in within day or two of reaching target dose. I’m ultra careful with them at the moment. They are in back of a cupboard. Long way from my stomach. I ought to be taking stuff though. Doctor said pure coincidence and wont change them.
They should say something about “methyl___” in the ingredients on the back of the label. It just means that the body has to do less work to convert the vitamins into a useable form. It can be a big help for some people, do nothing for a lot of people, and probably mess up a small minority of people as well. (-:
My mom takes it for fibromyalgia, but recently has had to lower the doses because they make her feel so strange. Almost too good, like she can’t handle the energy level or something.
I also believe MTHFR is not fully understood or confirmed yet in the scientific community. It is interesting and makes some sense but I see a lot of mixed results in people who get treatment, including my family members.
Methylated vitamins B6, B12 and folate made me much worse, took for about two weeks but gave me symptoms which made work impossible, just when I was thinking I would get through the year. I stopped them and I’m making very slow progress and I am back at work.
Just wanted to add my experience, I am 8 days into taking methlyated b12 supplements and have noticed an “too good to be true” reduction in my symptoms, where I have had hours where I feel like a normal human, something I havent experienced in 6 months. I’ll stay on it and see about upping my dosage. hopefully this dose’nt jinx it…
B12 can cause dizziness but not all dizziness is fixed by treating b12 deficiency. I take 1000mg b12 injections every month.
Hale, that’s great news (either way mate!). What product are you using?
We’ve a friend who has regular B12 injections too, every three months and always starts to feel dizzy as time approaches for next injection but I don’t think he experiences MAV-like symptoms. He’s always very understanding of my symptoms though because he has some personal knowledge. No, I don’t see how B12 would cure MAV. It’s not addressing the root cause. Helen
James, I am taking Seeking Health Active B12 and L-5 MTHF.
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Helen, what’s the root cause of MAV? Please do share. I ask in a bit of jest, but I imagine my MAV is multi-factorial, and is a likely combination of various genetic and environmental risk factors. Active B12 is an integral part of the methlyation cycle which plays a role in metabolizing homocystine. Homocystine has been shown to play some role in increasing stroke odds, miscarriage and potentially plays a role in migraine.
B12 is also a co-factor of serotonin, dopamine and norepinephrine production. Serotonin and norepinephrine are two of the transmitters that Effexor and likley ami and nort work on, some of the more successful MAV drugs.
Active B12 is also prescribed in the US to aid in the treatment of depression and schizophrenia.We know depression is often co-morbid with migraine and schizophrenia is a disorder of cortical hyper-excitability, much like migraine.
I am in the process of getting my whole genome sequenced, and if I have problems with my MHTFR enzyme gene( the one that aids in the activation of b12), it seems like for me, that could be a potential “root cause” that leads to a lot of downstream knock-on effects. Sure I won’t be fixing that allele and resulting enzyme, but I’ll be making sure I get enough active B12 to support all the various systems that rely on it.
Who knows, this could just be placebo. Only time will tell.
What is the ‘root cause’. I haven’t a clue. Nor it seems have the medics not really and I think it needs to be found before a cure for it is found, obviously. If indeed MAV is a single entity. Is it. No idea but I doubt it somehow. I think mine erupted because of fluctuating hormones which are probably something I’m genetically predisposed to, accompanied by environmental factors or even other probable genetic personal ‘malfunctions’ in my body for want of better word, and BAM. The neuro-oto who originally diagnosed me said it was ‘multifactorial’ but there he stopped so I’m none the wiser I’m afraid. With all your genome testing you might prove luckier. The way things are going in UK we’re lucky to be able to collect a month’s supply of pills at a time without an IOU because of drug shortages so I’m sure they’ll draw the line at expensive tests of/for genomes. Not in the near future at least. I’m happy to just accept it as MAV and keep on swallowing the pills providing I can get them that is! Helen
Root cause for MAV is an interesting question. Empirical evidence suggests that migraine meds bring down migraine and the dizziness goes down along with it. So it is common sense to assume migraine causes the dizziness. But what causes the migraine ? could be metabolism, could be endocrine/hormones, could be genetic pre-disposition to migraine. What causes normal migraine no one knows the answer yet so we don’t know in the same vein what causes vestibular migraine. But let’s not lose sight of the goal here - squelch the migraine with meds and your dizziness will get better. Good luck !
And I think there are many different root causes too. I suppose there are alot of other illnesses/conditions that are successfully treated without anybody knowing the root cause either. Cancer used to be one I think but breakthroughs hv now been made there with some types I believe. Helen
Just a reminder that as a kidney cancer patient with a very rare tumour type I am in the 100,000 Genomes Project which studies my DNA for all inheritable
diseases. The results should be available soon, it can take up to a year and they took the sample in April this year. I will post anything of interest.