Post Isotretinoin syndrome, B12 deficiency - weird story with ongoing recovery and few questions

[qrQ]

Hi, I don't know where I should write since this is both intro and recovery, so i'll write here. Mind you that I reinstated the drug, and I read that luring another members to experimental treatment is forbidden, i'm not encouraging anyone.

I was on Lexapro for 3 months in late 2018, jumped off quickly, then tried to reinstate, then had problem to jump off again, which was hard but I did it. The point is, after 3 weeks into reinstate I started haing brain zaps and I realized that you have to have those. Unfortunately, I also did drugs like MDMA, dissiciative which blocked almost completely my progress - yes I was an idiot.
Then I took CDP choline and had fever symptoms for 2 weeks, then I lost a lot of weight, super vasodilation on arm and legs.

The point is, for past 2 years I could go back to small dose like 2,5 and everytime most synptoms resolved but everytime I jumped off it went back normal. Almost like body cannot "click". I reazlied that having brain zaps is important because every time I had them I get better and better.

Then 6 month ago I went off of Accutane after 6 months of treatment and got depression etc, typical post isotetinoin syndrome, It turned out that my body was in state when it just needed B vitamins, mostly B12, B9 as well as B1, B2 etc,, in fairly good amount. It turns out that many side effects of accutane therapy are probably due to B vits depletion on cellular level but whole thing is tricky, since this is B12 deficiency (unfortunately, I did not test before supplementation with B12 and B9, but my doc said instant improvement was indication of folate and/or B12 functional deficiency, all symptoms matched and 1,5 weeks constant supplementation of big doses gave 500 pg/ml so not so high). There was very minial numbness on legs and arms and dead spots, so I suppose I had big folate depletion and lower B12 but not full-neuropathy-and-constant-pain low. Whole thing is tricky, since, there are differenty forms of B12, I react the best to cyancobalamin, methyl gives me bad axniety and depression. Potassium with B12 is also very important if you'redealing with B12 deficiency, since B12 will use up all potassium if you were deficient.

So long story short, my post Isotretinoin syndrome was nothing more than B vitamins depletion, which is hard to recover from, since there is a lot of cofactors like potassium , magnesium, folate etc and my body to fully recover and click from pssd also needed B vitamins as well. I'm 90% cured from everything I think, I have full libido, still have some brain fog, which is improving with small increments - now I don't know how much I recovered from pssd, B12 deficiency, because they overlap, I may have been B12 deficient the whole time.

How many of you are B12 deficient ? I only knew I was once the levels dropped I crashed completely and my doc said that empiricism with B9/B12 supplementation is the best, unless I have homocysteine test, because many people have functional deficiency due to low folate and high B12 even in the 800s. I have to constatly take at least 500ug cyan daily (occasional I'll take methyl there and there and observe symptoms, mixing methyl/adenozyl also is beneficial for some people)

Edit: I want to point out that I probably wasn't deficient in the first place, and deficiency slowly happened over last few years, more like I was borderline deficient, not so low so I could function, but not so high enough for nervous system to fully recover.

[fellow1]

Did you have erectile dysfunction ?

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Yes. My patterns were similar like pete's recovery - after reinstate when I jumped off second time, wake-up in the morning, brain fog, emotional blunting, libido 3/10 or so,, ED and when in the evening everything at 90%, up to the 10 pm and next day again. Everything, I mean brain fog, lack of emotions, ED, low libido. There is pattern of recovery that goes from waking up up to the evening, the upward spiral through the day of all symptoms, including mental symptoms as well - they all work together. The problem is to make things going after reinstating drug and jumping off second time, secret ingredient, I may re check all herbs that I took too. You have to hit pattern when you wake up with symptoms and in the evening you are 70-90% cured and next day again. Windows and waves.
As for B12 - fixing B12 may not fix the problem, but checking homocysteine and vitamins may be good staring point just for the fact that low B12/B9 might cause problems on it's own including nerve damage.
I also have slight B6 toxicity as well, so some brain fog from that, but pssd wise at least 90% recovered, full sexual function, pattern through the day almost flat.
Oh and I make sure my D3 levels are in the 80s ng/ml at least, if that helps (always pair with K2 and magnesium if you want to take D3)
Edit: I want to point out that it's good to try oral, sublingual and shots, depending whether there was a problem with absorbtion regarding B12 levels, starting small - B12 shots may cause hypokalemia if someone is in low to high 200s and has cellular-level deficiency, so be careful with dosage.

[qrQ]

So this is the list of herbs that I think may have helped - my original post was written just before going to work in like 10-15 minutes so I omitted quite a few things:
After reinstate and jumping off second time i'm 100% sure that I took:
Bacopa, Kudzu root, turmeric with pepper, a lot of CBD.
After that I took CDP Choline and now question - does anyone have really veiny arms, especially after CDP choline ? Like vasodilation to the point of absurd, I had it. I have occasional tingling and little zaps and react well to 0,5 mg of lexapro, it flattens daily pattern 100%, when I jump off I go back to like 90%, definitely is not hurting, so my body reacts to it right way.(note that I take original drug, nothing else).

I wonder if mechanism of action for ssri's involve sigma receptors and neuronal regulation through their downregulation and tingling them with lower dose get them back on track, I can't find public papers that I have seen some time ago but I remember:
- affinity was like 200-400 nm for most ADs, enough to cause activity
- there is some link to histamine release, I remember people reported partial recovery around time they got itchy, like histamine release, I have occasional tingling/itching like symptoms too.
- sigma1 causes ACTH release so it affects HPA axis, progesterone is antagonist on S. receptors but I don't know which type.

The key are brain zaps and electric shocks, almost like there is neuronal disengagement via some types of receptors, I suspect sigma types, the more zaps I got, the quicker the recovery was. I wonder if this is related to neurons firing again, the same type of symptoms are in neuropathy when damaged nerves are waking eg. lhermitte sign.

https://www.academpharm.ru/images/uploa ... ._2020.pdf

Any thoughts ?

[HzeTmy]

I have motility problems laxatives not working ... Like episodes of constipation ... That sucks idk what to do ...

[fellow1]

so you saying , you started getting brain zaps from b12 and thats when your recovery started ? or you think it wasn't b12 that contributed, but more like supplements you were taking ?

[fellow1]

The key are brain zaps and electric shocks, almost like there is neuronal disengagement via some types of receptors, I suspect sigma types, the more zaps I got, the quicker the recovery was. I wonder if this is related to neurons firing again, the same type of symptoms are in neuropathy when damaged nerves are waking eg. lhermitte sign.

forgot to quote. asking about zaps because experienced them and it coincided with windows.

[qrQ]

Ok, too much info in one post so i'll make things clear - after reinstate a few years back I started getting brain zaps, about 2-3 weeks into reinstate, I had windows correlated with zaps, then I had trouble getting off second time, and took some supps which include kudzu, bacopa, turmeric and CBD(I listed them there because some of them may have helped, very hard to say which one)

Then took CDP choline and my recovery halted completely for some time, not zaps, nothing. However, I realized very early on that getting zaps is key to make things going, I could go back to original drug anytime but recovery was slow. For the past year or so I got some random zaps there and there and couldn't figure what makes them happen, sometimes I had them after weed and alpha GPC but not enough to fully recover. It turned out that I ommited B vitamins, which are important for nervous system(choline is sometimes called vit B4 actually btw.) and probably levels of my B vitamins dropped over time, as body was utilizing them to recover and to rewire brain. I took some b complex there and there but nothing big.

Then after accutane I had big crash, typical symptoms post-accutane, which, as it turned out, is nothing more than B vitamins deficiency. My veiny arms started to look normal, but recovery was pattern, when I wake up, symptoms at 8/10, through evening when symptoms were at 4/10, then 3 etc. Recovery include windows and waves pattern, it's longer than most people expect and include those daily upward-spiral type of pattern, at least for ssri's - it's critical to pay attention to this whether you feel better in the evening etc.

Also, very important - B12 deficiency or any B vitamin deficiency will cause symptoms on it's own, so sometimes it's very hard to distinguish them from pssd. I'm recovering from accutane as well and I have to maintain regime, it's a long process but ironically i'm thankful for this.

I'd recommend for any people here to pay attention what supplements they are trying and whether it causes zaps - I found some user reported zaps from B12/TMG for example.

Also, don't take gingko - it blocks conversion for vit. B6 into it;s active form and every time I took it I had sleep problems, headache and felt way worse for at least two weeks.
https://en.wikipedia.org/wiki/Ginkgotoxin
https://pubmed.ncbi.nlm.nih.gov/26092494/

[fellow1]

Ok, too much info in one post so i'll make things clear - after reinstate a few years back I started getting brain zaps, about 2-3 weeks into reinstate, I had windows correlated with zaps, then I had trouble getting off second time, and took some supps which include kudzu, bacopa, turmeric and CBD(I listed them there because some of them may have helped, very hard to say which one)

Then took CDP choline and my recovery halted completely for some time, not zaps, nothing. However, I realized very early on that getting zaps is key to make things going, I could go back to original drug anytime but recovery was slow. For the past year or so I got some random zaps there and there and couldn't figure what makes them happen, sometimes I had them after weed and alpha GPC but not enough to fully recover. It turned out that I ommited B vitamins, which are important for nervous system(choline is sometimes called vit B4 actually btw.) and probably levels of my B vitamins dropped over time, as body was utilizing them to recover and to rewire brain. I took some b complex there and there but nothing big.

Then after accutane I had big crash, typical symptoms post-accutane, which, as it turned out, is nothing more than B vitamins deficiency. My veiny arms started to look normal, but recovery was pattern, when I wake up, symptoms at 8/10, through evening when symptoms were at 4/10, then 3 etc. Recovery include windows and waves pattern, it's longer than most people expect and include those daily upward-spiral type of pattern, at least for ssri's - it's critical to pay attention to this whether you feel better in the evening etc.

Also, very important - B12 deficiency or any B vitamin deficiency will cause symptoms on it's own, so sometimes it's very hard to distinguish them from pssd. I'm recovering from accutane as well and I have to maintain regime, it's a long process but ironically i'm thankful for this.

I'd recommend for any people here to pay attention what supplements they are trying and whether it causes zaps - I found some user reported zaps from B12/TMG for example.

Also, don't take gingko - it blocks conversion for vit. B6 into it;s active form and every time I took it I had sleep problems, headache and felt way worse for at least two weeks.
https://en.wikipedia.org/wiki/Ginkgotoxin
https://pubmed.ncbi.nlm.nih.gov/26092494/

Did you actually do b12 blood test ? Mine b12 levels are in the middle of the range. Many of us tried b12 and for many it making things worse. For me personally it feels very serotonergic and like ssri It's making me more anhedonic and spaced out. Did you feel any of those when you started b12.

[qrQ]

When it comes to B12 topic is not that simple - yes, I did in the beginning after suspecting B12 deficiency, although I did some time after supplementing because I only suspected it(so many people make that mistake) - it was in middle of range in the 500s, so I suspect I may have been in the 300s before that.
However, if someone had B12 level very low, bumping B12 in the high range is not enough, and B12 level is not indicator of cellular level deficiency. B12 works with B9, which was on the lower range in my case and folate depletion will have exact same symptoms in CNS. Supplementing only with B12 will drain folate very quickly, as well as other B vitamins. The thing you experienced is "wake up symptoms" probably, when body have functional deficiency and in some cases you need to flood nervous system with B12 shots, high dose folate as well as other B vitamins like B1, B2(riboflavin is involved in metabolism of other Bs, including B6 and B9). Now I have it around 1200-1500, because I use sublingual as well, but even then I have to use B12 daily, either in oral our sublingual route - even though my B12 is very high, I still benefit from it.
Other tips - try cyancobalamin, hydro as well as methyl, you can mix it up. I still have occasional negative effecs from methyl, including insomnia, depression, anhedonia, it is common with methyl, but I benefit from it in the long term.
Potassium - if you have cellular level deficiency, B12 will drain potassium very quickly, symptoms include nausea, depression, anxiety, insomnia, tremors, fast heartbeat, extreme cases of B12 deficiency are people who had to use 1 gram of potassium every hour or so, because there was so much damage in the body. Magnesium helps to mainstain potassium evel in blood. You may also check your iron and ferritin, because B12 and B9 will drain iron as well.

What was your ssri, how long have you been on it and what was your taper ? CT, fast abrupt or slow taper etc ? Did you try to use small dose of exact same drug to reinstate ?