Riboflavin

[Neshema1]

Anyone try riboflavin. Wow, it gave me a boost of energy - not a cure but better than most supplements I've tried. I read it is good for dysautinomia & mitochondrial disease. I'm curious if anyone else has tried it. Oh, & it also is known to help migraines!

[kclynn]

I would be interested to also know what other benefit (if any) the B2 (riboflavin) has other than migraine control. Last fall before he was diagnosed a very smart Dr. in an ER told my son to take 400 mg of Magnesium Citrate for his migraine. This ER Dr. had previously been a head ache and pain specialist so we took his advise seriously. I don't believe he has had headaches since (other than short head pain resulting from loud noise). A Mayo Dr. also told him to add the Riboflavin so he has been also taking 400 mg. riboflavin since January.

We recently cut out the Magnesium because my son has been having so much GI trouble that can sometimes contribute. It hasn't made any difference so it apparently wasn't bothering him. Anyone who reads this and wants to take magnesium should know the Magnesium should be one of the "ate" types, citrate or glucanate, not the common oxide, and should not be combined with calcium as that can interefer with absorbtion. This is what we were told. It is hard to find. We order it from the big A and also did find it at the chain store called Vitamin World.

[Neshema1]

Riboflavin helps energy levels. It has an effect on mitichondria, which are parts of cells that carry energy. I'm kind of brain dead today & will try to write something better later. Ugh! Oh, but you might want to read about dysautonomia & mitochondrial disease. Two heavy hitters on that topic are dr. Boles in calif & dr Cohen at case western (recently moved from Cleveland clinic). There's a lot of info at UMDF's website.

[songcanary]

Kcmom,

Thank you for mentioning the magnesium types. I have been taking mag oxide 400mg for six months and recent tests show my levels haven't budged an inch! I couldn't figure it out. But I recently saw a new fibro doctor and he has recommended Fibrocare, which is mag glycinate along with malic acid. This board is soooo helpful.

[Rachel]

My doctor put me on Riboflavin (400 mg a day) for treatment of mitochondrial disease. It does seem to help a little bit with my energy level. It also helps with preventing my migraines.

Rachel

[Victoria]

We recently cut out the Magnesium because my son has been having so much GI trouble that can sometimes contribute. . . .

Not trying to hijack the important Riboflavin post, but I take Mag-Tab SR tablets. This is the only slow release magnesium made and it is absorbed by the gut much better (and doesn't cause diarrhea). Your pharmacy can order it in for you if you're interested.

Please keep us posted on how he does with Riboflavin if you go that route.

[issie]

Any time you take one B vitamin, you need to take them all so as not to imbalance them. Be sure to take a B-complex with the B2.

[Friedbrain]

Is it good enough to just take a multi-vitamin? I sometimes take a multi-vitamin when I feel shaky at night in case some deficiency is contributing. I have a seizure disorder, and one of the causes (or, presumably, contributor) can be vitamin B deficiency. I don't take supplements because there are so many that seem like they would help and also because I am never sure of doses. I hope I'm doing good by taking the multi-vitamin but my dh was telling me that studies show they don't help......?

[issie]

It depends on which multi-vitamin you're taking. Most of them, the amount of vitamins - espically the B's are way too low. If it's something you buy at the grocery store - it's probably not strong enough. If you find a good multi with at least 50mg of the B's and all the other vitamins and minerals in the proper ratio - then that IS good. Allot of people have to take additional vitamins or minerals based on their own individual needs. It takes allot of time and learning to determine what those "needs" are. You also have to look at the entire body and make sure something isn't going to be counter-indicated for certain conditions. It can be very complex and shouldn't be done without knowledge of what, how much and why - if you're adding additional vitamins, minerals or herbals. But, if you can get a really good multi, most doctors won't argue with that.

[toddm1960]

Add me to the list, I take 400mg a day (I also take a B100 multi) for my mitochondrial disease. I haven't felt much difference, but I continue to take it.

[Neshema1]

I read thiamine is also helpful (b1). I'm also on cerafolin NAC (rx b with NAC). also b5. These are not the usual b6 and b12 & folic acid ppl talk abt. Yes, I also have been thought to have mito but been too sick to go for my workup. So I've long been trying variants of the mito cocktails. Riboflavin is best one so far. I'm curious if anyone here with dysautonomia & mito had a muscle biopsy or genetic tests. Btw, there is a "dysautonomia mito" meeting (see mitoaction's site for info) on fri. U can call into a toll free nbr to participate. If anyone knows a mito doc near Chicago, please let me know. Thx for your feedback!

[toddm1960]

I've had it all, fresh tissue muscle biopsy, mitochondrial genome, cerebral spinal fluid tested and genetic testing.

[Neshema1]

Hey todd- thanks for the quick reply. Was it all conclusive? Can u believe umdf asked me to be a patient ambassador? I'm just learning by talking to ppl, reading & participating in the online chats. Seems like they all ask me abt their dysautonomia-I know too much abt that! So I'm looking for a mito doc, preferably one I can travel to without dying from the trip. I'm really very much beyond pots, unless there is some progressive form of pandysautonomia. At this point, the big guns in dysautinomia think I either have mito or some overlap of every pots subtype, msa, & paf. The whole thing is hugely frustrating & I'm on so much medicine that I think it's made my ans completely confused & unable to regulate itself. But the thing that really makes me lesn toward mito (even though I have some classic signs of msa) is the stuff that doesn't go with dysautonomia, eg, retinopathy, consistently low creatinine (serum & csf), parathyroid issues, and my hx since infancy (failure to gain wt, delayed walking & once I started, I later stopped for a while, lifelong severe problems with aerobic exercise, despite countless attempts to build up endurance slowly - although I was successful with free weights for 12 years, but now can't lift anything without my heart going bonkers,

[Neshema1]

Cont'd (sry abt length but hope you will read, as u have time, "energy" & patience)... Even with the free weights, I'd get so sore that in college, I remember many times sitting on the grassy quad/mall with friends & not being able to get up. Now, when I fall or faint (I used to faint out cold most of my life but since I got really sick abt 5 years ago, I tend to be unsure if I fell or fainted unless I feel my heart sink & the room go dark first & I get convulsive syncope, which is those nasty seizure ppl talk abt here). I'm having one system after the other involved & wish I were a hypochondriac - we can work with that! Too many positive tests & finally, like a photo becoming clearer in a dark room, the dots are slowly being connected. Although, I believe my maternal grandfather had dysautinomia (severe headaches, Parkinsonism, sudden cardiac death, and my mom exhibits some similar symptoms & OI, I've got neuropthy on both sides of the family), but I think mine is acquired & viral as I'm pos for Epstein Barr recombinant (recombined DNA & RNa) form, and that is believed to have been passed onto me during my mothers pregnancy. Also, I had a severe reaction during childhood to a tainted vaccine, which was taken off the market shortly after I was among the first to get it & my case is documented in the state health dept. It caused lifelong problems with autoimmune disease & afterward, I had a bit of an awkward gait & never could figure out how to do certain physical activities like diving or somersaults or (anything head first & requiring much coordination), but I was a prime target for a severe reaction with my hx of health issues since infancy. I say I grew up lying on the couch. No matter, no cognitive issues until the big pots onset (one day my hr was 68 as usual despite my low bp, which I thought was a good thing -no one said that was why I was an "easy fainter."- the next day I thought I had asthma cuz I was so short of breath I couldn't get from my car into my building at work & was passing out in the middle if the busy street I had to cross (my car was as close as one could get to my building at work). My students (I'm a tenured full prof at a major Univ & ran a doc program) staged an intervention & sent me to the doc)... Well, eventually I saw a doc who knows Grubb & who is hugely famous in pacing & he dxd me in three minutes & shipped me off to mayo, vandy, & Grubb to confirm. But while all agreed, all have watched my "pots" deteriorate severely and have looked for answers but can't figure out why I have speech issues, beyond fatigue, hyporeflexes, among a long list of systemic problems- more all the time. Needless to say, my stellar career is starting to feel like a distant memory & my full time job has become dealing with trying to sit up & find help & meet my basic needs & get help with ADLs. It so is not my bag to be stuck in bed rambling abt my health on an iPhone! I used to be very "active" at my pace, always on my own schedule. Being a prof was a high stress job (contrary to common belief we live cushy jobs & play golf after making our last promotion, which I did relatively young), but being a prof also let me control my schedule & work from home or see docs without being on a rigid schedule, although I often wrote my publications at 3 AM! But the past two years I haven't been able to even teach distance from home (we tried that for a while). I was a heavy hitter in my field & now I'm reduced to feeling like an infant hoping home health shows up to feed me, change me (ok i mean help me shower & get into clean pjs or clothes, & get me a warm blanket! It ***** ***** *****! But I've found a ton of support from both the dysautonomia & mito communities. So maybe u can message me more abt your mito, treatment, docs or whatever ur confortable with. Thanks for reading & best wishes to u.

[issie]

Neshema1,

I, for one, am glad that you listed the things you have gone through. I see allot of myself in your life history. It seems we are all so connected with these issues, but have so few answers. I also appreciate that you noted that you are a professional/intelligent person. So, many doctors dismiss us and think we are just lazy, housewives with nothing to do but think about ourselves and create health issues from being bored. NOT SO!!! We all have lives and want to live them. We wouldn't be searching for answers if we were content - just sitting around the house. I hope that you will continue to share with us your journey, maybe we can find some answers in what your life experiences are.

Issie

[sue1234]

I agree, Issie, that was a great story Neshema1.

With alot of us stuck at home most of the time, wouldn't it be great if we had a "POTS daycare", full of recliners, that we could all hang out in?? Oh well, I guess cyberspace will have to do.

[Birdlady]

I really think vaccines have something to do with these acquired mito disorders and even MCAD which has been talked about A LOT on here lately. I think they cause an autoimmune response within our bodies and then we are messed up for life. I tell my husband we all got the "soft kill", but that's probably way beyond what most people can wrap their minds around on here. There are some very evil people in the world.

I had a NutrEval test done and my body seems to have trouble assimilating B vitamins. However when I take them I get severe heart palpitations and sinus arrhythmia. I just cannot tolerate them at all. B12 and folate are the only ones I can take without any issue.

[toddm1960]

Dana I agree 100% with you

[issie]

Dana I agree 100% with you

Me too, Dana, I know that a polio vaccine did something to me, my sis and a friend and all of us have dysautonomia of some sort. We were all hospitalized as kids and none of us have found why we were sick then or have found a solution to our problems.

[issie]

Dana,

Have you tried taking them all separate and seeing which one you are reacting to? It could even be the capsule or the filler in it. The only B, I've found, that doesn't make me sick is a Nature Made time released B-100. I think since it is time released, it's not so much at once. I seem to tolerate that - but get nauseous with any other ones.

[sue1234]

Regarding B vitamins, I tested my blood levels. My B1 is normal, but my B6 and folate are elevated. I take B12 injections. Not sure on B2 or B3. Whenever I try to take a B-complex, my stomach bloating immediately gets worse. But, I would agree that I, too, have an issue with B vitamins not "working" correctly in my body.

[Birdlady]

The NutrEval test said I needed even more B12, B6 and Folate than I was taking. I was completely floored by the B12 because I had been taking daily injections of B12. It looks like my body does not make the active form of B12 properly (other markers seem to confirm this on my test too). I'm guessing that even though I take large doses of B12 only a small amount of it is actually getting converted into adenosylcobalamin. There is such a thing where that enzyme can be deficient or inhibited, but as far as testing for that, I'm not sure how someone would go about doing it. I don't have pernicious anemia (tested those antibodies), so it really makes no sense to me. lol At one point I was considering getting the adenosylcobalamin compounded for injections. It is much more expensive though and right now don't have the $$ to make the switch from MethylB12.

I like taking the active forms of the B's. P-5-P (B6) gives me heart palpitations within about 2 days of starting it. Folinic Acid has the exact same effect too, which I just cannot understand. I can take folate (metafolin), niacin and niacinimide, B1 and B2 with no issues. The problems start off slowly, but if I continue to take either P5P or folinic acid, it will escalate and become extremely uncomfortable. Once I stop taking them, it takes about 3-4 days for it to go back to normal. I've tried about 3 times now and it happened each and every time.

[Neshema1]

Wow! Thanks for all the replies & encouragement & sharing! I agree on the MCAD issue. I need to 1. Go hack and read the manifesto I wrote u all so I dont repeat myself - been brain dead from a nasty potsy seizure & b. Get some rest- did I say I'm brain dead from a nasty potsy seizure & don't want to repeat myself.. Lol! Don't forget the mitoaction dysautonomia mito mtg tomorrow at noon EST. I hope I remember! Night, friends! Xo

[Neshema1]

Oh & btw, my b12 was wacky high befire I went on b vitamins & it came down to 400s. Seems like my NE, which is >1600, severe hyoovolemia measured at vandy, hyponatremia, hypo this hyper that. Now the epogen already (my second try with it) causing severe iron deficiency... Blood counts been wacky. Used to have perfect CBC for such a sick Person but dig a bit deeper & find stuff like untraceable vit D, gastroparesis, neurogenic bladder, dysarthria, dysphagia, raynauds, sjogrens syndrome, adies pupil.. U get the picture. Oh and lest i forget a tiny brain lesion that doesnt explain anything, but hope it doesnt open up amd bleed. I thought one of the funniest dxs was "ataxic encephalopathy." What the bleep is that? Translation: clumsy, slurred speech, & brain kinda malfunctioning for some reason we hate to admit we don't know but bang as much as we want & no deep tendon reflexes. Oh, btw, I get daily IVS & have an implanted loop recorder. I actually got tO sit in the shower today... Finally got a home health aide from my insurance. Too good to be true but rather go on a date again before I die! Used to be quite social. Hate the isolation. Probably said that 5 times already! Btw,my reaction was to a rubella vaccine & oddly I am not immune to rubella. I won't get flu shots even. Get tamiflu to have on hand instead. Nite nite.

[Neshema1]

Alas, one last thing. Niacin scares me. Isn't it a vasodialator? Causes flushing. Ok nite for real! Profs talk too much!