I started cyanocobalamin injections on August 4 2018, almost right away I developed agoraphobia. I am doing the B12 protocol, daily injections, folic acid (5mg), potassium, magnesium glycinate, Bcomplex as well as D3, K2 and zinc.
I have not been able to leave my house for nearly 1.5 years. I was in bad shape because of my B12D for a few years and when I began injections things got worse for a while which I understand is normal. I am slowly feeling better, better balance, better walking a lot of improvements have happened, but no improvement on the agoraphobia and anxiety side of things. I don't know what to do.
I am considering changing from folic acid to methylfolate or even folinic acid. I am honestly heart broken over this. It just came out of no where when I started self injecting.
Has anyone else gone through this or have any advice. I am not on any pharma medications. Just taking my supplements.
I can see how this could've developed as illl before starting treatment like we all are.
Its possible to get stuck in a certain symptom. I'm stuck it seems in head pain.
Infact I'm al.most the opposite. I'm used to bring so dependsnt. Cycling
Walking in the fields. Getting on a train to see people. I'm recognising I could get more ill if I cant get out.
I've now have to stick to public places when I walk as when I did walk in very familiar fields I got so weak I wasnt sure if I'd get home. Also how long it would be for someone e to find me.
So I've taken the attitude if I have to lie down in the street I will.
I cant stay in!!
What I'm trying g to say is slowly a way will be found for you with the right sort of help.
This condition has many dimensions
It's certainly become the biggest challenge in my life .
I've had a few!
List all your improvements.
Keep a diary.
I'm in a darker place at present mainly due to pain and frustration ans as I've said the opposite.
I am sorry for your head pain. I guess some symptoms can be tougher to abate. I have a feeling my anxiety and tinnitus are going to linger much longer than I would like.
you may need to look at other strategies that aren't related to B12 to buildup mental resillience - meditation may help and this post might give you some ideas on dealing differently with the anxiety.
Stop taking 5000 mcg of folic acid. It is not needed and it can be harmful to take that much long-term.
Taking methylfolate (400 mcg a day) may help. There are a very few people who respond better to methylfolate than to folic acid. But it is 10 times more expensive. Folinic acid is no better than folic acid unless you're having certain chemotherapies.
I have tried cutting down on the folic acid but I got a headache that just wouldn't go away. I am told I need that much daily to work with the daily B12 shots.
Despite what you might hear on some Facebook groups (that should be banned for providing dangerous information) there is absolutely zero evidence that high-dose, long-term, folic acid supplements are anything but dangerous.
Ask the most vocal proponents of that theory in that group what the source is of this 'fact' and they will tell you to look at 'The Files' (which they treat with the reverence that a southern baptist treats their bible). Ask them exactly where in 'The Files' and they'll tell you to look in Sally Pachalok's book. Ask them what page and they'll ban you from the group.
Having B12 injections does not, in any conceivable manner, increase the body's requirements for folic acid. b12science.com/B12Science/D...
I have no idea, but wanted to let you know that taking methylfolate made me feel panicky. Also, I have read that folic acid and folinic acid are quite different (from each other) for some people in how they process them.
My hunch (completely unfounded) would be that it's one of the supplements you're taking.
Would it be worth trying a different form of B12 than the one you're using? Or experimenting with reducing the frequency?
That said, another avenue to possibly explore would be whether your diet is contributing to feelings of agoraphobia. Specifically caffeine and nightshades, as (the way I understand it) both can affect your acetylcholine levels. It may be possible that prolonged B12 deficiency causes increased vulnerability to the chemicals in these foods -- I'm still trying to sort that out.
I think it is either a supplement I am taking or one I need and not taking. The B12 I am on Cyano is helping me heal... I am walking better than I have in a couple of years and my balance is better as well. Lots of other things to do with the brain have improved as well, just not the agoraphobia so much.
My diet. I considered that too. I haven't had anything caffeinated since i was 25 and I am now 52. I don't drink coffee or sodas at all, just water either flat or sparkling like lacroix. I have been a total carnivore since August last year. Just meat (mostly beef) and water. I even gave up dairy (which is allowed on carnivore) because I realized it caused me to be depressed. Not sure if after a few months of no dairy if that could help my brain - depression and anxiety. Will have to wait and see.
I immediately felt "off" taking vitamin d3 and K2 when I found my vitamin d was low (19/7.6). Not agoraphobia but a very sudden dark cloud, with no rhyme or reason. I realize this makes no sense as improving one's d deficiency should makes things brighter, not bring a new symptom.
I still take both because I have seen numerous physical improvements. When I am finished my three month top up I might consider other choices.
Just putting it out there because maybe it has nothing to do with your injections. I started my cyanocobalamin shots a month or more before I found out I had a d deficiency as well so I am 100% clear that the injections didn't cause this sudden dark cloud.
I don't think it's my D3 or K2 because I started taking those about 6 months before my first cyano injection. The strange is.. my very first injection I had at a weight loss clinic that gave them out for $20 because my family Dr. wouldn't, I felt fantastic. It felt like my brain was so hungry for that B12. I calmed down. I felt alive! My brain fog lifted and I felt like being social. After I started the whole protocol for b12 is when it all went down hill. It was so bad at one point even the thought of going near my front door turned my legs into jelly. I can at least now step out just enough to get a package that's waiting for me.
I know all of this is trial and error.
I have had someone suggest that I could have pyroluria which could be the cause of my anxiety and agoraphobia. I am looking into this also.
As I've saids I felt very odd when I started vit k mark 7 with d . I'm better just with vit d as I've taken for years. Hopefully a low enough dose ti kero me well and not clog my arteries.
Have you had blood tests that show you need all these supplements you've been taking? I'm just wondering because you might have created an imbalance if your levels are too high in some of these.
I've suffered from agoraphobia in the past when I was much younger and know how difficult it is to overcome. I had young children at the time and had to force myself to go out for their sakes. I always went to quiet places, lots of walks, quiet times in playgrounds etc.
Hi Showgem. I totally agree with you. Too many supplements. SusieCat needs labs to support the need for all these supplements. I think if she went to a doctor he would order all these labs and she would be shocked at how messed up her body is. I also had agoraphobia when my children we younger. I also worked full time. I made myself go to work and go to things with my children, because I HAD to. I also saw a doctor regularly and took an antidepressant and antianxiety med, as I also had panic attacks often. I had no family that I could go to for help. Everyday was a nightmare, but I never told a sole. How I got though those years, I'll never know, but I credit being responsible for my children as being the reason I was able to over come it. I made my choice and never looked back. After about 2 years I was starting to feel pretty confident and able to go most places without any fear, so I went back to school and became a registered nurse. I practiced nursing for 27 years and they were the best years of my life. I treasure every minute of being able to help others. I truly believe that if you live your life for others, it takes the focus off of you and you end up forgetting about your problems. I helped both my sons through college and they are doing well. I never thought my life would turn out so well, but through it all I became closer with God and I know he will always love me and give me peace of mind. Sorry this is so long, I think I just needed to get it all out. If you've gotten this far, I thank you for caring.
'I felt fantastic. It felt like my brain was so hungry for that B12. I calmed down. I felt alive! My brain fog lifted and I felt like being social.
But that... After I started the whole protocol for b12 is when it all went down hill'
I think you have identified your own answer!
I suspect from what you say that you may have been told about 'a B12 protocol' on one of the Facebook groups (or a website)? The idea of a 'protocol', of a 'one-size-fits-all' supplement regime that makes B12 'work' is utter nonsense (as per fbirder comments about the dangerous advice relating to taking 5mg folic acid daily!).
For instance, too much vitamin d can cause toxicity, vitamin B6 is neurotoxic if over supplemented. And please don't take any potassium tablets unless prescribed by a doctor (potassium is very finely balanced in the body and even relatively small amounts over what the body needs can cause cardiac arrest). And too much iron can cause iron overload - this is extremely dangerous.
The human body is like a car...none of us need the same amount of oil or petrol (vitamin and minerals) to run efficiently, what suits one may not suit another...and the only way to know what vitamins are required is to get levels tested by a doctor...and then only supplement with what is actually required (if anything). Over supplementing can have long term detrimental effects. (The exception being vitamin B12).
Despite 'advice' given on some of these Facebook groups, there is no such thing as a 'B12 protocol' (as this may pertain to a supplement regime)...it's a made-up concept. Also worth saying that you do not need all those supplements to make B12 work!
As I said above, I think you've found your own answer...('after I started the whole protocol for b12 is when it all went down hill'). As others have suggested, the supplement 'protocol' may be making you ill through over-supplementation...or taking supplements that you just don't need (certainly, over supplementing with folic acid can cause anxiety, amongst other things).
I suggest that you stop ALL supplements other than the B12, keep a symptom log, and monitor changes for three months. Then get your GP to test ferritin (and full iron panel, if possible),, vitamin D, and folic acid (the main culprits that can be affected by absorption issues). If you are then proven to have any deficiencies, sensible and appropriate supplements can be decided upon.
Please do stop taking everything except your B12 (unless another vitamin or mineral deficiency has been identified and you are being treated by a doctor for this).
Also - no idea why you've decided to try a carnivore only diet...but in doing so you are actively depriving your body of a whole range of nutrients that are essential to a healthy life! It may be that your symptoms will be helped if you adopt a more balanced diet?
If some of this sounds a little pointed...apologies...it's not 'pointed' at you. We read here often of those who are made unwell by following ridiculous supplement 'regimes' recommended elsewhere...so I'm quite angry that this happens...and frustrated for you, not at or by you 😉.
I'd be really interested to hear how you get on so please do post again and let us know. Good luck x
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