Complete shift in symptoms from B vitamins

[healthybunny55]

Hello!

Well, it's happening yet again - my symptoms have completely shifted. This happened in 2007, then 2017, then 2020 and more recently, a week ago. When it happened in 2017, I speculated that it was due to starting a methylated B complex. I developed mostly neurological symptoms and reactions to food, IBS, sensory issues, etc. I somehow improved significantly/was in remission for a few years, but have no idea how because I took hundreds of supplements/herbs (what was I thinking) and also rested a lot.

In 2020 I'm also pretty sure that I shifted symptoms when I started changing supplements non-stop. I also introduced B1 (including TTFD form) and I'm quite sure that caused things to shift - I had severe insomnia, muscle tension, anxiety, weird symptoms and reactions, IBS, but no fatigue and no PEM! I also thought I could be oxalate dumping, since I changed my diet drastically and it was previously high oxalate for some time.

Somehow, it more or less improved - again, I tried so many things and I also ended up spending time in a different climate (hot and humid), but I continued with the B1 for several months. I had no fatigue. I then ended up in a different country (dry arid, high altitude) and lost access to the TTFD and some other supplements. I ended up fatigued, but also very depressed. In fact, I went from such a high in the hot, sunny place to such a low state in the other place (it was winter), that I also suspected Bipolar, but I had plenty of other symptoms. Thinking about it now, I was depressed and also crying a lot (but mostly during luteal phase - PMDD) in 2017, in the lead up to the methylation supps and sudden shift in symptoms.

I started a B complex a week ago - non-methylated folate as folinic acid, other Bs, only 15mg TTFD and 50mg Befothiamine (first time taking it). I also started the transdermal B12 oils. I guess I should have gone more slowly. For some reason, I also added NAC for a few days. Well, something shifted and the extreme fatigue and muscle pain and weakness shifted to IBS symptoms and other symptoms, as usual! I stopped the B supplements (apart from the B12 oils) a couple of days ago and the IBS immediately stopped, but I am reacting a lot more to salicylates now, I have severe, severe headaches, neck pain, insomnia and dizziness. I also have difficulty with eye tracking and focusing. I had this symptom in the past, too.

I read an account of someone else experiencing something similar, and specifically with methylation supplements. I feel there must be something to it? I'm just not sure what to do now. The other trend with all three cases is that I went through a period of a high oxalate diet, followed by reducing too quickly. All three times I've wondered if it's oxalate dumping or the methylation supps. The thiamine could ALSO be inducing oxalate dumping. The last two times this happened, I went back to a high oxalate diet - not sure if that helped or if it was other factors (other supplements, of which there were plenty, changing location, who knows). I also took SAMe at the time.

What gives me a bit of hope is that I've experienced this in the past and it somehow resolved and I went into remission or mild...although not for very long periods of time. I have so much energy now, but this is worse because I feel so dizzy and strange that I don't even know how I'm writing this. Most of all, I feel "strange" and out of it. It feels like my ears are blocked or my head is somehow blocked.

Still thinking about bipolar, too. I don't think that my symptoms correlate that well, although could look similar to rapid cycling Bipolar II, along with other symptoms. I think that the two constellations are Bipolar II, autism, MCAS, MCS, plus strange neurological symptoms OR chronic fatigue, muscle pain/fibro symptoms (originally diagnosed with this) and PEM from minimal exertion. There must be an explanation...Oh and POTS symptoms have also magically vanished now! Overall, though, I think I feel less functional, because I can run around the house now but can't really think straight. Another thought about the blocked ears feeling is that I used new earplugs last night and when I took them out, it felt like I could have pushed ear wax too far down - not sure if this makes sense. Obviously this wouldn't explain the shift in all other symptoms, haha, but when I had this rotation in symptoms in 2017, I had the same sensation and then ended up with impacted ears again and again, which baffled doctors. Then it all just stopped happening with the ears..Most of all, it feels like I'm on an airplane. It also feels like I have tension in my tongue and like I just need to relax it, somehow. The more I think about it, the more I think it's related to the methylation block..

Oh! Just remembered another time in 2022 when I tried to take just 5mg of TTFD but developed a lot of anxiety and panic and thought the world was ending, but also had greatly improved energy. Hmm.

I've wondered about trialing keto (ketovore version) again soon (last year I lasted a month) because of the connection with bipolar. Not sure..

Do I just stop supplements and keep waiting for this to subside, and then if fatigue worsens I start a methylation or thiamine protocol very, very slowly? Hmm.


Thanks a lot!

 

[linusbert]

. Most of all, I feel "strange" and out of it. It feels like my ears are blocked or my head is somehow blocked.

i know this feeling, ear pressure as if i am driving uphill with a car but worse, sometimes even feeling like head is in choke hold. with this comes somewhat confusion and dumb feeling in the head. its so annoying. i can provoke this with bad posture, like neck bent down from reading something, half lying in my bed, laptop on my stomach and this bent down position of the head, if i hold it for long, like doing this over hours, the next day i become this weird ear / head pressure. i suspect the muscles are compression nerves or something.
if i relax that position or dont overdo it in that position i can somewhat control this. but its annoying af!

also sometimes it seams its additionally triggered or worsened by putting fluids into my nose, or sneezing like a idiot or some allergy episodes which block my nose. like if the tube connection mouth and inner ear are getting blocked or fluids go into there and build up in the cannal or even inner ear.

one theory i have is , that the muscle for that tube isnt working properly , so the tube isnt closing completely when it should and also not opening enough when it should. as the neck muscles are very tightly near this tube i suspect if the wrong position is holding to long the muscles put pressure on the tube and impairing its functioning... until muscles and nerves relax again.
its also worse on the right side. i know this if i get with a thingy near the right tube, its fluttering (like with corona testing in the nose). makes sense for me as i have everything on my right side, my TV etc. so i am most of the day looking slightly to the right side.

so probably correcting wrong position, and doing the right physio stuff could help this.

The last two times this happened, I went back to a high oxalate diet

i know not much of oxalate, but i know if you have a rich calcium diet with the oxalate offender, the calcium and the oxalate will bind in your guts and not be absorbed therefore excreted with your stool without harm.


we got this thread also, its related to mcas? problems.
https://forums.phoenixrising.me/threads/vit-d-causing-allergies-to-flareup.91636

but developed a lot of anxiety and panic and thought the world was ending

i know the problem is in that case irrational panic and anxiety for no obvious reasons, but being kinda sarcastic, the prospect of the world ending isnt too bad for me. some meteroid crashing on my house immediately taking me out without pain or something, i kinda like that idea.

 

[Bluebluesky]

That sounds pretty wild. For the part of it that is about methylation, could some of it be cofactor deficiencies? Like you get better but then at the same time, or after a few days, a whole bunch of other problems appear. What happens is that cell division is hindered because of the methylation problem. So when methylation gets going the body starts the repair work that couldn't be done previously by making a lot of new cells. And for those cells a lot of 'building material' is needed in the form of nutrients, which will create deficiencies because you cant't keep up on an normal diet. Potassium is the most usual one to get deficient in, but if it is a serious case it could more or less be any nutrient.

I don't thik that would account for all of it, but maybe some of it.

 

[healthybunny55]

That sounds pretty wild. For the part of it that is about methylation, could some of it be cofactor deficiencies? Like you get better but then at the same time, or after a few days, a whole bunch of other problems appear. What happens is that cell division is hindered because of the methylation problem. So when methylation gets going the body starts the repair work that couldn't be done previously by making a lot of new cells. And for those cells a lot of 'building material' is needed in the form of nutrients, which will create deficiencies because you cant't keep up on an normal diet. Potassium is the most usual one to get deficient in, but if it is a serious case it could more or less be any nutrient.

I don't thik that would account for all of it, but maybe some of it.

Thanks. I'm just not quite sure what to do about it. Any ideas why it would get much worse towards evening? I've stopped all supplements now, although adding a bit of potassium and drinking coconut water..
I also used a vagus nerve stimulator for a couple of days - perhaps it's also overstimulation from that..

 

[Dysfunkion]

Thanks. I'm just not quite sure what to do about it. Any ideas why it would get much worse towards evening? I've stopped all supplements now, although adding a bit of potassium and drinking coconut water..
I also used a vagus nerve stimulator for a couple of days - perhaps it's also overstimulation from that..

What specifically has the vagus nerve stimulator done for you? I get the same thing when I add anymore than methyl b12 to my supplement line up and I don't know why myself. I tried to drop methyl b12 at 1000 mcg a day but I appear to need it since without it my fatigue and generally how slow my body gets will get so bad that I can't function. I did when I got a lot worse over the summer due to some unknown combination of factors (I was on NAC, methyl-folate, niacinamide, and taurine at the time which I am not on now and doing much better without) get intolerant to the methyl-b12 I needed and I was able to get the tolerance back with 100 mcg of Mk7 K2 every morning followed by taking propolis. I don't feel a need to add any other B family vitamins supplemented into the mix anymore since my body seems to when this current base stack is altered have very weird symptoms like you.

 

[Bluebluesky]

Thanks. I'm just not quite sure what to do about it.

One approach is to get tested for nutritional deficiencies. Your doctor should be able to help you with some of them (if they cooperate). If you can afford it I believe OAT urine testing has the most extensive and reliable results. Then there is also hair mineral analysis.

The other approach (which is free) is going by symptoms and try to read about what sort of nutritional deficiencies could cause the symptoms, ask about it in here and do some systematic trial and error with supplements. Very often then getting one supplement will deplete the next one along the pathway, so understanding the biochemistry behind can be very helpful.

You can think of it as an imaginary pancake baking machine. If you add a lot of flour it will eventually run short of either milk or eggs (or both). It is as simple as that.

The range of symptoms that can be caused by nutritional deficiencies is quite surprising. It truly affects everything in the body.

 

[Bluebluesky]

I've stopped all supplements now, although adding a bit of potassium and drinking coconut water..

Did you stop the b12 oil as well? I started the b12 oil from b12oils.com a month ago and I got really bad because I didn't realize how strong it is. You really need to go low and slow with it, and you might need A LOT of potassium, like 5000 mg a day. I'd recommend that you do the diet counting on that. I take a drop of the oil, like the smallest amount I can get out of the pump, and only one or two times a week.

There is a thread in here on the b12 oils, and there is a facebook group, Understandig b12 deficiency, but it can be a challenge to get into since it is archived most of the time. It took me many tries over several weeks.

Also keep in mind that this might be about more than one thing.

 

[healthybunny55]

One approach is to get tested for nutritional deficiencies. Your doctor should be able to help you with some of them (if they cooperate). If you can afford it I believe OAT urine testing has the most extensive and reliable results. Then there is also hair mineral analysis.

The other approach (which is free) is going by symptoms and try to read about what sort of nutritional deficiencies could cause the symptoms, ask about it in here and do some systematic trial and error with supplements. Very often then getting one supplement will deplete the next one along the pathway, so understanding the biochemistry behind can be very helpful.

You can think of it as an imaginary pancake baking machine. If you add a lot of flour it will eventually run short of either milk or eggs (or both). It is as simple as that.

The range of symptoms that can be caused by nutritional deficiencies is quite surprising. It truly affects everything in the body.

Thank you. I'm not in the US - I don't know whether drs are able to order such testing over there? It's not an option here.

I did OAT a couple of years ago and would like to do it again, although I think the results took a few weeks last time. I did consider hair mineral analysis again - I suppose it wouldn't give insight into the more recent shifts, right? Do you think that Nutreval could be helpful? I need to think about what I can afford.
It's sad, but my background is in biochemistry, yet I feel so out of it that I can barely comprehend things now. It wasn't like this always. It's mostly a struggle to read at the moment.

I noticed that there's definitely a correlation between the dizziness and food now, but ever since I started those supplements. I start to feel just a bit better, but once I eat, I feel incredibly dizzy and unsteady, and also have stomach gurgling. This is also how it evolved many years ago, when I started the Bs. I am eating bland chicken (without exposure to salicylates, oxalates, histamine) and it's happening.

 

[healthybunny55]

Did you stop the b12 oil as well? I started the b12 oil from b12oils.com a month ago and I got really bad because I didn't realize how strong it is. You really need to go low and slow with it, and you might need A LOT of potassium, like 5000 mg a day. I'd recommend that you do the diet counting on that. I take a drop of the oil, like the smallest amount I can get out of the pump, and only one or two times a week.

There is a thread in here on the b12 oils, and there is a facebook group, Understandig b12 deficiency, but it can be a challenge to get into since it is archived most of the time. It took me many tries over several weeks.

Also keep in mind that this might be about more than one thing.

Thanks again. I finally stopped the B12 oil this morning - I last used it yesterday. I was using one small pump. I was also using one pump of the selenite oil and 3 pumps of selenite/iodide/molybdenum. Plus 50mg of B2, 1mg biotin and the Thiavite B complex, which has folinic acid, 15mg TTFD and 50mg Benfothiamine. The B12 oil was methyl and hydroxy forms. If you say you're using just a small pump one or two times a week, that is eye opening for me. I really think that I overdid everything. Ironically, I thought that I was going very slow, too.

I drank some raw coconut water earlier today and did feel better than I do now, so perhaps I do need more potassium? I just seem wary of supplementing so much potassium, but maybe I need it. You say "I'd recommend that you do the diet counting on that" - what do you mean here?

Thank you. I also used a new vagus nerve stimulator at the same time as introducing the Bs. I used it only for one minute a day, but there are people in vagus nerve stimulator Facebook groups that talk about getting similar effects from 10 seconds. It just seems so crazy to me! However, I have had pretty extreme reactions to EMF and radiofrequency devices in the past. Perhaps it's everything in combination.

The anxiety, jaw pain, headache etc has calmed down a lot, but the dizziness is almost worse, in a way.

 

[healthybunny55]

What specifically has the vagus nerve stimulator done for you? I get the same thing when I add anymore than methyl b12 to my supplement line up and I don't know why myself. I tried to drop methyl b12 at 1000 mcg a day but I appear to need it since without it my fatigue and generally how slow my body gets will get so bad that I can't function. I did when I got a lot worse over the summer due to some unknown combination of factors (I was on NAC, methyl-folate, niacinamide, and taurine at the time which I am not on now and doing much better without) get intolerant to the methyl-b12 I needed and I was able to get the tolerance back with 100 mcg of Mk7 K2 every morning followed by taking propolis. I don't feel a need to add any other B family vitamins supplemented into the mix anymore since my body seems to when this current base stack is altered have very weird symptoms like you.

I'm not sure what is has done, really. I used it only for one minute a day, but there are people in vagus nerve stimulator Facebook groups that talk about getting similar effects from 10 seconds. It just seems so crazy to me! However, I have had pretty extreme reactions to EMF and radiofrequency devices in the past. It's supposed to help with dysautonomia, but it can obviously also cause overstimulation.

I also used NAC for a few days, prior to the addition of the Bs. The strange thing is that I have no physical fatigue now, nor do I have muscle weakness. I can walk around the house feeling fine, apart from the immense dizziness and neurological effects. Interesting that the K2 helped!

 

[healthybunny55]

@Bluebluesky Re the dizziness in particular - I also wonder if it's vestibular. I also happened to start using new earplugs which felt a bit deep, and perhaps pushed some ear wax or dislodged crystals or something? I hear it also happens with oxalate dumping (which would be provoked by the Bs). Oxalate dumping also deranges potassium. I don't know. I don't know whether to try some exercises for rebalancing my ears (can't think of the name), although I'm afraid to try anything at this point! I also had severe reactions to chiropractic and osteopathy in the past. I didn't think that it's possible to be this sensitive!

 

[andyguitar]

but once I eat, I feel incredibly dizzy and unsteady, and also have stomach gurgling.

You might find this interesting........

 

[Bluebluesky]

For now I think it would make sense to focus on potassium. It sounds very much like that is a large part of the problem at the moment. As long as you get it from food it shouldn't be possible to get too much. Try to see if you can establish what your potassium deficiency symptoms are. (The symptoms that disappear when you get potassium.) As long as you have had those symptoms recently you are unlikely to get too much potassium.

sorry for my second language English for the "do the counting". I meant that it is worth it to look up exactly how much potassium you get from what you eat and drink. 5000 mg is really a lot. Orangejuice, milk, tomato juice, all things you can drink can help a lot since you don't have to chew through it.

Do I just stop supplements and keep waiting for this to subside, and then if fatigue worsens I start a methylation or thiamine protocol very, very slowly? Hmm.

Sorry, my cognitive impairment makes me think I have read things, but I miss half of it without noticing. Yes, that sounds exacly like a good plan. Get lots of potassium first and then when yours symptoms subside and you feel ready try to go low and slow and only one thing at i time. I haven't followed it myself, bt I believe Greg Russell-Jones recommend that you introduce the supplements one at a time 2 weeks apart, starting with the minerals.

I have had major reactions to the minerals as well, especially I spent months titrating molybdenym. It would make me fall asleep and sleep like a baby immediately after taking it in micro doses. That wasn't the worst side effect I have tried but it took me 3 months to be able to tolerate it in normal doses.

 

[healthybunny55]

For now I think it would make sense to focus on potassium. It sounds very much like that is a large part of the problem at the moment. As long as you get it from food it shouldn't be possible to get too much. Try to see if you can establish what your potassium deficiency symptoms are. (The symptoms that disappear when you get potassium.) As long as you have had those symptoms recently you are unlikely to get too much potassium.

sorry for my second language English for the "do the counting". I meant that it is worth it to look up exactly how much potassium you get from what you eat and drink. 5000 mg is really a lot. Orangejuice, milk, tomato juice, all things you can drink can help a lot since you don't have to chew through it.


Sorry, my cognitive impairment makes me think I have read things, but I miss half of it without noticing. Yes, that sounds exacly like a good plan. Get lots of potassium first and then when yours symptoms subside and you feel ready try to go low and slow and only one thing at i time. I haven't followed it myself, bt I believe Greg Russell-Jones recommend that you introduce the supplements one at a time 2 weeks apart, starting with the minerals.

Thank you. I am intolerant to so many things, so not sure there's many options, but I did have some coconut water in the past hour and took just 100mg of potassium citrate and feel a tiny bit better. Perhaps I need to have some more. I'm just so nervous without knowing levels. I also started vitamin D, which I read depletes potassium, too. I just don't know...pulse is higher today, yet I don't have the extreme headache. Yesterday I had so much muscle tension and pain, yet normal pulse. Oxygen saturation keeps dropping every so often, so not sure what's going on. Blood pressure is normal - neither high nor low. Hmm. I wonder how much potassium would be okay to supplement with, but I imagine none of those supplements likely increased potassium, right? So low is more likely than high.

 

[healthybunny55]

You might find this interesting........

Thank you! Hmm, interestingly, ever since I started those supplements, I have had heart burn and acid reflx, so that would make sense. It has improved since stopping the supplements, and it gets better with each meal, at least. Interestingly enough, when I had these symptoms in 2017, I had the immense stomach gurgling, heart burn, dizziness and then recurrent ear infections or impacted wax, which baffled everyone. I was also wondering whether the dizziness this time could be vestibular, since I tried out some new ear plugs for the first time and it felt like perhaps something happened afterwards - perhaps crystals getting dislodged? That wouldn't explain the other symptoms, but perhaps I just have several things going on at once.

I'm not sure how one should approach GERD, really. I was on PPIs many years ago, which I regret. On the one hand, I considered an H2 antihistamine/antacid, which could also potentially help with histamine and mast cell symptoms. On the other hand, I thought that GERD was actually caused by low stomach acid?

 

[Bluebluesky]

I didn't think that it's possible to be this sensitive!

Would you happen to know if you are highly sensitive by the definition and test of Elaine Aron? I suspect that my crazy methylation reactions has something to do with my nervous system being wired that way (I get 23 out of 25 in the test).

I did OAT a couple of years ago and would like to do it again, although I think the results took a few weeks last time. I did consider hair mineral analysis again - I suppose it wouldn't give insight into the more recent shifts, right? Do you think that Nutreval could be helpful? I need to think about what I can afford.

Do you remember what that OAT test said about b vitamins and minerals? Sounds like you have had this problem for years? Or at least I would suspect that such a strong reaction would stem from the methylation problem building up over years. Allthough it also sounds like you have more than one issue going on at the same time.

I am not at all a test expert. I hope someone else can answer this. I suggested testing before I realized that probably potassium is your main problem at the moment.

It's sad, but my background is in biochemistry, yet I feel so out of it that I can barely comprehend things now. It wasn't like this always. It's mostly a struggle to read at the moment.

Wow, you are a biochemist? That is so cool! I just read along and try to pick up clues and inspiration for what supplement to try next. I never get the bigger picture due to my cognitive impairment, but since self-experimenting is at the core of what I do that is relatively ok. But wow, yes, the brain fog is a factor.

salicylates, oxalates, histamine

This is all new land to me. I'll have to look into it.

 

[andyguitar]

On the other hand, I thought that GERD was actually caused by low stomach acid?

Can be caused by hiatus hernia which pushes acid upwards. So in that instance it's not to little or to much acid, it's just rising up to where it should'nt be. Can also be caused by infection with H Pylori bacteria. Fairly easy to test for.

 

[Bluebluesky]

Thank you. I am intolerant to so many things, so not sure there's many options, but I did have some coconut water in the past hour and took just 100mg of potassium citrate and feel a tiny bit better. Perhaps I need to have some more. I'm just so nervous without knowing levels. I also started vitamin D, which I read depletes potassium, too. I just don't know...pulse is higher today, yet I don't have the extreme headache. Yesterday I had so much muscle tension and pain, yet normal pulse. Oxygen saturation keeps dropping every so often, so not sure what's going on. Blood pressure is normal - neither high nor low. Hmm. I wonder how much potassium would be okay to supplement with, but I imagine none of those supplements likely increased potassium, right? So low is more likely than high.

I'd say low is way, way more likely than high. Take a look at this thread about potassium deficiency from methylation.

Too bad with the food intolerances. I would choose to drink coconut water by the liter then. I have recently started supplementing with potassium citate. I take 250 mg three times a day. If you get bad from low potassium and if you are generally sensitive then I would trust that your body would let you know by a new set of symptoms if your potassium should get too high. As long as you are getting relief it should be ok.

 

[healthybunny55]

Can be caused by hiatus hernia which pushes acid upwards. So in that instance it's not to little or to much acid, it's just rising up to where it should'nt be. Can also be caused by infection with H Pylori bacteria. Fairly easy to test for.

Yep, I actually suspected the hiatus hernia and wondered about seeing an osteopath for it, maybe..
Also have H Pylori. And SIBO and all sorts. In the past, the B1/thiamine helped to resolve those GI things. That's also why I wanted to go carnivore for some time, address the gut things, but being in ketosis again scares me - partly due to potassium (I always seem to be so conservative with it), partly just potentially not being able to burn fat for fuel.
Thank you!

 

[healthybunny55]

I'd say low is way, way more likely than high. Take a look at this thread about potassium deficiency from methylation.

Too bad with the food intolerances. I would choose to drink coconut water by the liter then. I have recently started supplementing with potassium citate. I take 250 mg three times a day. If you get bad from low magnesium and if you are generally sensitive then I would trust that your body would let you know by a new set of symptoms if your potassium should get too high. As long as you are getting relief it should be ok.

Thanks! I just took a bit more potassium (just another 100mg) and am drinking more coconut water. It's high in salicylates, but should be fine for now.
I would like to try carnivore again at some point, but last time I was so conservative with potassium intake. I only took 300mg/day!