Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I have found CBD taken sublingually helped my sleep quality and duration consistently. Maybe it could help you get some better sleep. I used Dragonfly CBD it is pharma grade and tested. Consistent and get what you pay for with no illegal stuff by accident above stated minimum unlike so many others.Yes it is.
I need time to recover now. Its already been 2 months and 22 days.
I will recover overtime. As soon as my sleep get better, I will recover.
Now I sleep 6 hours but waking up tired.
So need my sleep to recover and be my old self.
I will make it.
i've had all these symptoms from low quality b12. i think some are produced from black mold (Aspergillus Niger) and aren't purified enough. I get all these symptoms from toxic mold exposure as well. one of the worst offenders was Global Healing's B12. I almost had to go to the emergency room I had such a bad reaction.Hi,
I just wondered if anyone knew why B12 greatly worsened my symptoms?
I had an adverse reaction to an antidepressant in January, and since I have been struggling with various symptoms. I had covid in march, which made it all worse and I have struggled with fatigue and bad brain fog, depression and there things since.
I took 1000 mcg cyanocobalamin as prescribed by my doctor for my B12 deficiency (my B12 level is 154). I took it for five days, and noticed a worsening of my symptoms straight away.
I quit two weeks ago, but after I quit, I have continued getting worse. Now my condition is really bad.
I have gotten insane anhedonia and total loss of emotions. I cant feel emotions in my body or mind. I can force myself to cry, but I dont feel it, and there is no release. I am just stuck in either this insane dull mode or depression. Its hell. I cant get out. I cant feel any interest, motivation, pleasure, happiness, joy, sadness, anger. I am just stuck in this strange mode.
At one point it felt like my soul just left my body, and it feel so strange now. My sense of touch is greatly diminished and my body almost feels a little numb. When I take a shower it is like I cant feel the warmth properly and it does not make me feel anything good. It is like my presence left. My feet are constantly cold and feel strange, especially under my feet the sensitivity feels less.
It is so strange this disconnection from my body. When i touch my leg it feels dead and not like my leg. All my senses are off.
My arm fell asleep because i was laying on it too long, but it did not prickle as bad as it used to. It probably did, but the feeling was dull and more distant, like i could not reach it properly. Like it was happening in some other strange arm. I also struggled to understand what the feeling was and i could not recognize it at first.
This happened before as well. I had pain in my stomach. The pain was dull and strange and i Did not understand what it was, but then i thought it was a period cramp!
I have many sensations in my body, but now i cant figure out what they are.
After I took the B12 I also got more nerve pain and burning in mye legs that was not there before. I also got a bout of bad akathisia and I still have bad insomnia. I also have bad fatigue.
I am stuck in a state of restlessness. I cant calm down. My body cant feel comfort or calm. I cant calm myself down because my brain does not react to any stimulus that might be calming. I feel trapped. My body does not get tired either, even though I am in a constant restless state with no escape. I have tried blankets, hot bottles and everything. My body does not react to it and I get no emotions and just stay restless.
My smell is gone, and the few things I can smell makes me feel nothing. It is the same with taste.
Basically all senses are dulled and makes me feel no emotions.
My memory is also really bad. My head is a mush and I cant think clearly. I have trouble accessing my toughts and my memories. Sometimes I actually feel like I have dementia. I have lost ability to visualize images in my head, and imagine touch, smell and tase.
I have this bad pressure at weird places in my head. Mostly the back of my head and the palate and nose.
My sexual function has also decreased, and my orgasms are way more muted.
Has anyone experienced this taking B12 supplements when deficient?
What is the mechanism? I keep getting worse after quitting two weeks ago, I dont understand that.
Can this get better and how long will it take?
I also need the B12 for my deficiency. It is to bad to correct by food. What should I do to prevent this from happening again? Is it better with B-complex? Are there other things I need to think about?
In fact if your enterohepatic circulation is working correctly (I believe it is not in ME/CFS and dysfuctional HPA axis) you can recycle the B12 the normal liver has before becoming deficient for about 2 years before becoming deficient in it.Damn !!! I didn't know that, I thought it was water-soluble like the rest of the B complex family. That makes me feel a lot better about not being able to take any for all those years .... thanks !!!!
This is a common experience with some people. I can not tolerate more than 250 mcg B12 per week. And it takes me 2-3 days to recover from a single 250mcg dose. For some people, these start-up symptoms go away after a month or two. Some people have to slowly phase-in the B vitamins in order to just be able to tolerate the start-up symptoms.
Here are some related discussions:
B12: a simple 5-second poll for everyone
What is your understanding of the methylation cycle trap or blockage?
Early stages of genetic engineering lead to this process of using micro organisms to produce things we need like insulin. It is required as there are so many of us and cost is an issue.it's pretty messed up that they produce a lot of stuff from black mold such as citric acid as well.
Wow, I don't remember this post at all 😆For those struggling with taking b12, I was one that had to take folinic acid as well, in addition to 1 cap Seeking Health Multivitamin Sensitive to feel moderately well. By no means am I 100%, as more self experimentation is necessary, but doing well enough that I can enjoy where I'm at.
Unsure where to go from here actually...
Just popping in so you can see my signature link. I have extensive info on methylation supplements and how to handle taking them.
Hello. Where do I find your signature links? I don't see them on my phone. I clicked your name and still didn't see them.
Also, I'm about to receive a B12 injection for the first time. I have responded well to sublingual methyl 1000mcg. But 2000 was hell on earth.
Can you recommend a basic protocol of cofactors that might be a good idea to add? I'm terrified of a result like the OP. I am fairly sure I'm B12 deficient. I've read a bunch including a B12 book (which says history plus symptoms is more important than test results for various reasons). I am vegan, have been taking antacids, and had very low intake of B12 for years and even less the last 1.5 years and almost zero for 6 months. I have been tested and am awaiting results. The other thing is that 1000 mcg was REMARKABLE in the improvements -- which is another thing the book said would be relevant. I'm pretty sure this is my issue to some extent. I'm just nervous bc I'm probably deficient in other things bc of the antacids.
I've read a ton on this site about B12 but it's all just SO complex and confusing. Yet, we need B12.
I would try eating liver but I have reflux as part of my symptoms. I've had that bad for over a year. And red meat is a huge trigger, which causes damage every time it happens. (reflux was GONE for one day, despite never leaving before, with 1000 mcg of methyl).
2000 however -- I really should have considered going to the ER.
did you try famotidine (like meds)? i did use proton pump inhibitors never worked out. also my reflux seamed to be dependent on the exact food.
tried ranitidine (whcih is in class of famitidine) and that worked wonders.
famo and rani are h2-type histamin blockers.
therefore i think the root cause for my reflux is histamin foods and liberators as well as allergies to foods.
antacids make you deficient in a LOOOT of things including minerals, trace elements and iron and stuff.
"Can you recommend a basic protocol of cofactors" ->
take everything. low dose multi mineral and vitamins including ADEK.
and then give yourself the b12 injections subcutaneous.
But I would still consider a multi if I could find one without folic acid.
do not take anything if you do not feel comfortable with it.I'm really, really nervous about tonight. And I'm barely awake bc my reaction last night to 2000 mcg of sublingual methyl B12 yesterday morning was SO bad. Serious muscle spasms all over my body.
you are agitated right now.First things first -- I just want to sleep tonight. 😢