Unfortunately had a very bad evening yesterday, and morning today. Don't know what to do.
Had to go to a Gastroscopy/Endoscopy at a hospital in London yesterday.
It went ok (a bit uncomfortable but to be expected). Obviously had to fast for 25 hours before the procedure.
I injected B12 in the morning. I've been self-injecting for 7 weeks now.
The hospital gave me intravenous fentanyl during the procedures, which made me feel amazing for a couple of hours! All the anxiety and depression went away, got my appetite back, felt normal!
Then, as it wore off, the anxiety kicked in, but multiplied by 10! Coupled with depression, it meant I had a panic attack on the train home (again) and found myself walking in the field behind our house at midnight last night, feeling suicidal. Had a massive row with my wife, who thinks I don't care about her or our son, otherwise I'd stop being suicidal.
She's talking about me going in to psychiatric ward at hospital, but I think it would finish me off, plus no access to B12 injections or co-factors.
I had felt better for last few days until yesterday, having been injecting every day. Had had 3 good evenings in a row. I think the fentanyl must have done something bad to my endophins/serotonin, but hoping it wears off. The crisis team had given me diazepam but was scared to take it so soon after the fentanyl.
Don't know what to do. If I go into an NHS psychiatric ward I think that a) It'll make me worse (I've seen the local one and it's pretty grim, b) I'll lose access to frequent B12 injections and co-factors, and c) Am hoping that frequent B12 injections will start to lift my mood soon. I just want to feel normal again. I had zero anxiety or depression 4 months ago, before my B12 and folate levels tanked. I wish there was a good GP or consultant who could treat the whole picture. Please give me hope, as not sure how many more of these posts I've got in me.
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This is a hard post to answer albeit I am aware a low B 12 can cause both anxiety and depression. Maybe during the proceedure together with the fentanyl your B12 levels dropped.
I can understand your wifes concerns for your safety but you do need to discuss your feelings with a practioner. We are not medically trained but never the less we care about your well being.
I had both a endoscopy and a colonoscopy and noticed my health went down after. Keep the B12 going in.
I think all sorts of things can make the symptoms worse. A trip to London for a start, and possibly worrying about the procedures, then the procedures themselves. I know it would cause me problems. Even little things make me go backwards in recovery. Hang in there 😔
Thank you. I do think the withdrawal from the fentanyl may have exacerbated things, as was still very anxious this morning. I just want to get through this period, and praying thst symptoms ease eventually.
Me too, having an exhausting and pain day today. Met my friends for lunch, but it was hard work. And now even more tired. Going to do nothing tomorrow and hope it helps.
I thought of you today and your post I read, because I too had an odd day of extra pain and a little more anxiety. I think I over did it this week since Saturday traveling to wedding, then this week going to grandkids events, so today I got scared my back muscles were giving me jolts and my brain was different and loud ringing in my ears, and a little more anxiety, so I will do an extra shot tonight, and i've been resting mostly today, except to get up to eat and only two trips to town, I got so scared I hope I get better.
I am really not good at the moment. Not sure if it’s just reversing out, or something to do with my vitamins D protocol. I can hardly get out of bed, feel so lightheaded, shaky, weak. Tinnitus is worse, and pulse all over the place, sweating. Lost my appetite.
I’m having some bloods done at the docs today and having a 24 heart monitor next week to check it’s nothing to do with my heart, although I don’t think it is.
My my vitamin d protocol I’m supposed to be taking magnesium and I haven’t been. So this could be exacerbating my symptoms. But hoping it passes soon as it’s awful.😞
Really sorry to hear that, Chickens. Hopefully your blood tests might show something. Sounds like something more than just co-factors. Could it be your iron again? I presume you've had tests for thyroid/parathyroid done?
Just been to surgery for blood tests, FBC, and also thyroid. But won’t get results probably until next week now. I had an iron infusion in May and supposedly that was to top me up for next five years!
I don’t seem to have any autoimmune conditions, so hoping it’s not thyroid, but I understand low magnesium can affect thyroid function.
oh that reminds me so because magnesium upsets my stomach so bad I can't take it orally anymore so I have to apply a get on my body, I did put that on during the day yesterday and it seemed to be helping, normally I only do that when I go to bed but I did it during the day when i was not feeling good at all and i think it did help, I'm going to put it on during the day today as well. so your right it may be your magnesium.
Ug i'm sorry for your feeling down at the moment I am learning that our feelings can be subject to change at any time during the day. this morning I feel better and I know it can change depending on what I eat or just the internal healing with the brain and our system. I read on hear that our system is so complex and we feel every bit of it when it's healing. last night I was feeling all kinds of things in bed. but we will get through this. together I pray.
please continue to stay with your injections and prayer, I too had horible paranoia and anxiety in the beginning of the crash, it was not normally me at all, I couldn't go anywhere to talk to loved ones I had no idea what was happening to me. I have my moments still at beginning 5 months but Jesus has brought me here to these beautiful souls on this forum to help me. I'm not at all like I was in the beginning. I'm steal healing and now I am able to go out to functions and drive myself everywhere and see my loved ones. I have to learn to watch it like Chickens44 was saying it's easy to over do it in the beginning. Wwwwdot has helped me also with my injections being increase and it has helped me in the last 2 weeks soooo much. Just have faith in Jesus and this forum it does get better. I read the others that have come out on the other side how they live with going on walks again and traveling but have passed this horrible faze when our brain is healing still there are all kinds of mood swings we go through, I still have them but way more mild and less frequent.
Thanks so much for taking the time to respond. I've been injecting every day for the last 5 days, and it had seemed to help - Until last night. I'm glad to hear that you're slowly improving. How long was it before your psychological problems started to get better?
well i'm in my beginning of 5th month so just ever so slowly they were improving like more in the 3rd month but even before that but slowly . as I changed in my injection treatment, everyday injections seem to have been the biggest improvement with the mental part. when I did EOD the day of no inj was really a struggle but now then with everyday it was more even. and then got better, then I was helped with not being afraid to do more that one a day and even more improvement came and i was able to even go out on more outings with the grandkids and family with less struggle. so I do every six hours now and I use cyano cobalamin, methylated gave me more anxiety and that is what works for me, everyone is different. but I do 6 am inj then 12 noon inj then before bed in eve another inj. they are all 1 ml each.
yes it was for me at first too. I think for about 3 day of it was more reversing out but then I realized wow I can do the new things in the morning away from the house like give our elderly Dr. a ride to morning Mass that I was already panicing about when he asked if I could give him a ride for about 4 weeks he had surgery of course I could not refuse him. it was hard for me to get myself there but I had no problem after adding the injections. it is helping the panic attacks now so I can do more.
My study and trials have established that injecting every 6 hours is the minimum time between injections that the B12 is effective for healing at the cellular level for me. EOD 'works'.
Although unpopular on this forum I use Betine 4.5 grams with each injection to reduce homocysteine which increased when I started injecting B12. This lead to an increase in healing at the cellular level.
Thanks. I will look into the Betaine. How did you discover that your homocysteine was going up after the injections? Interestingly I just got my gene analysis data back after a long wait, and while it seems I don't have any issues with the infamous MTHFR gene, I do have a couple of other gene anomalies which can a) inhibit B12 absorption and b) raise homocysteine levels. Could also explain why I've long suffered from essential hypertension.
Just to let you know that I am sure there are many here who like me have you in their thoughts and want the best for you and your recovery. Its so hard but take care and keep up with SI B12.
Sorry yre having such a hard time...please try to hold onto the fact you were having some better days prior to this, that's incredibly positive. The fact that you had these better days even with this demanding journey & test ahead shows how much the b12 was helping & how well you managed to do by going ahead with it all.
We seem to feel so much better naturally when that b12 is there, whereas when we're lacking it. the anxiety & fear, self doubt & feelings of lack of strength mentally & physically make us feel so very different I find. Even coping with answering the phone seems a challenge & I've known times it's all felt too much I've felt like crawling in a cupboard & hiding!
Find my mindvwhizzes around far too quickly when b12/iron not adequate, & anxiety symptoms lick in far too easily which doesn't help.
Not eating for 24hrs wouldn't have helped, that can cause panic attack type feelings & set off fight/flight.
I can't help on the medication side of things but am sure they could have had effects by sounds of things.
Keep talking, remember you have endless folk on here who understand & care, keep on with that b12 & other levels topped up & be kind to yourself. That's a big ordeal you've been through this week. please give yourself a chance to get those things out of your system and hold onto the fact you were feeling better and will do again...take it easy.
Thanks so much for the kind words. I hate constantly posting on here when I feel so low. But honestly don't know what to do. The anxiety I've had has been brutal, but I know others have been through it and come out the other side, and everyone on here has been so kind.
You're more than welcome, it can feel a very lonely place when we feel so bad, but knowing others can relate and understand has been such a support to me and hoping you find it too.We have to keep remeneting that it's the lack of what we need is no doubt causing these feelings, through no fault of our own. Yes, we can do our best to self talk our way around it all but still doesn't make it an easy task when our body is trying to tell us it's not happy & in need of things.
They say just having one deficiency is hard enough, but we've no doubt got many going on, trying to keep our iron, folate, Vitamin d & maybe other functions all adequate, its no wonder we struggle to feel good at times.
It does take time, but hold onto fact you're going the right way & will soon be posting on here youve had some good days again.
Please don't walk around that field at night,lonely, just do as you're doing, get on here and talk to someone or read through posts where you find others have felt like this, but are experiencing good times again. Perhaps your family may even like to read some too...take care
Thank you. I've read some of the replies on here to my wife, usually with tears in my eyes. Honestly, people have been so kind, and I hope that at some point in the future I'll be able to 'pay it forward' and help others. It's tragic that we not only have to fight to recover from this illness, but have so little understanding and support from the medical profession, or the general public (although the latter because there is so little information in the public realm. 😔
We empathize with you and are here for you on this forum. It’s great you can release some worries by writing it here, good job!! Already a positive step. I’m sorry that procedure knocked you off the progress you had gained. Did you have GI issues needing the procedure, sorry I may have missed that.
Like others have said it’s good to recall when you were doing well, and know that will happen again. Hang onto it. My progress seems incremental but I’m trying to take one day at a time. Still hard, I know. One thing I’m trying currently to help my gut, is choosing low histamine foods. It’s been an easy adjustment. I did have my raw data DNA run to see what my gene variants might indicate. Fascinating but need to learn more to more fully interpret results or use. Just trying to line things up in my favor. 🌼
Thanks for the reply. Yes, I was getting some biopsies done and a complete checkover. Luckily all they've found so far is inflammation of the duodenum. But these investigations followed the discovery ladt week that I had mesenteric panniculitis in my stomach, which I'm hoping doesn't have any neuroendocrine tumours. Interestingly, I found a medical abstract online about a case of mesenteric panniculitis caused by low B12! Like you, I also have had my DNA analysed, which does seem to show a couple of generic reasons for high homocysteine and low B12. I can rectify the B12 but not sure about the homocysteine!
Thanks. Have not taken the SSRI yet, because with my mesenteric panniculitis, they are looking for neuroendocrine tumours, which can be affected by SSRIs.
I'm only taking diazepam sporadically, and at a very low dose, but either way the crisis team assure me they won't let me get addicted to it.
My blood pressure has also been extremely high, despite my medications, so I have to be really careful with SSRIs. But I don't have a problem with them per se, as long as they help and get me through this period.
Yes, my wife is scared, and worn out after trying to support me through this. It's so difficult (and I feel so awful about it) but hopefully my brother, and a friend are going to stay at different times to help out and give my wife a breather so she can get out (she's scared to leave me alone at the moment - It's taken a huge toll on her mental health as well.
You are obviously very much loved by not only your wife and son but by your brother and friend, keep those thoughts close.
With regard your gastrology results, they now explain why you have a B12 deficiency - no Dr can argue this fact........ Mesenteric panniculitis has been reported in association with vitamin B12 deficiency and chronic atrophic gastritis [19]. The patient was treated with prolonged course of systemic corticosteroids with complete symptomatic and radiologic remission.
You are now on the right track so stick with it and accept all the help offered to get you through this phase.
Happy to! I purchased the Strategene Report from Seeking Health. I received over 100 pages. There’s also a separate option for a Histamine report. I did both. Customer Service was great when I needed help realizing I had separate emails and links for the different reports. Good luck to you in your journey. Here’s the link: seekinghealth.com/products/...
I'm very sorry you're having such an alarming time. Experiences like yours make us feel as if we'll never feel better again. All I can say is that anything that knocked my equilibrium in the early stages of improvement set me back and worse. Fentanyl is a heavy duty drug and for the likes of us folk will have a profound detrimental effect, especially in the early stages of treatment when there's nothing solid to work with. Keep taking the B12. And medics rarely admit that their drugs can do harm.
Thanks for the encouragement. Ironically, before the fentanyl sedation, I had been injecting every day for 5 days, and it had really seemed to help compared to the EOD injections. I didn't see it as a long term thing, but I've had so many hospital visits, scans and other stressful tests that my system just kept getting battered.
I am so sorry to read how you are feeling. You have had a lot of good advice from everyone who has replied and there is little more I can add but please don't underestimate the reaction you can have from any medication. If this has happened it will eventually pass. I often opt not to mention things I have experienced thinking "it's just me, get over it" but through reading other peoples' experiences I have come to realise it's ok if it helps just one person. Many years ago after an endoscopy "to help clear some small ulcers at the top of my stomach" (I dread to think...) I was given Omeprazole. After taking for two days I had the most unimaginable fear of speaking to anyone. I clearly remember a neighbour ringing the doorbell and I almost cowered in the corner and refused to go to the door. It took about a week after stopping to feel anything like I did before but my goodness it shook me. Mild compared to what you are experiencing but I hate to think where it could have gone.
It sounds as though you were very unwell by the time you were diagnosed with B12 and folate deficiency and many of us know what that is like. The neurological symptoms of both are well documented and can be extreme - not dissimilar to what you are experiencing. Have you spoken with Dr Klein? As an anaesthetist he may be able to advise on this and/or on any contraindications with medicines you are taking. Did your more recent blood test show an increase in folate and vitamin D?
Finally, this is just a proven personal thing that makes me feel better on every level and worse if I lapse. Remove as many chemicals from your life as you can - from plugin air fresheners, fabric softeners, anything perfumed like soap and body wash, spray cleaners to cat flea collars. When you pick something up consciously think, do I need to use this and do I feel worse if I do? It helps reduce the load on your body. I sincerely hope you are feeling better this morning.
Thanks, that's really helpful. I hadn't thought to ask Dr Klein about the effects of the sedation but that's a very good idea. I should add that as a result of the inflammation found during my colonoscopy, I have been prescribed... Omeprazole! I was very reluctant to take it because I know it can precipitate depression, but now I'm even more reluctant to take it! Ironically my recent blood test showed my folate as having gone from 2.6 to above the top reference limit (27) in only 7 weeks, which makes me wonder. My Vitamin D went up from 57 to 110, but still a way to go.
I do hope he can help although you may find the effects starting to wear off by now but at least you have another avenue to explore. Yes, Omeprazole is a pretty standard prescription for anything inflamed, which I'm sure it has its place and it may help you, it's just worth being aware of possible side effects. My own thoughts are people get greater side effects when their stomach acid is already low, which I don't think they know unless it's tested, but I may be wrong. As your vitamin levels have improved dramatically (which is an excellent sign though it may be a while before you feel the benefits) you would wonder whether low acid caused/contributed to your deficiencies but then you have inflammation which I presume would do the same. It would be interesting to know more about the inflammation and what has caused it.
I can't find your post (actually I think it was a reply to someone) saying you had a thyroid scan which showed there was a problem but was dismissed and wondered if you had explored this further. I mention this as b12 and thyroid issues are often connected and I wondered if you had thyroid antibodies which may indicate something autoimmune going on. You also mention none of the doctors will accept B12 could be the cause of your symptoms. I have come to understand it's because they don't know, they haven't been taught. Once you realise this it slowly enables you to approach things differently because otherwise you are banging your head up a brick wall and that is frustrating. If you haven't already, can I suggest you read some of Grey Goose's posts on the thyroid forum? Many people are left very poorly through doctors' lack of understanding of their conditions and she explains it beautifully - it's because most doctors don't know anything about thyroid. B12 is the same.
Finally, can I second FlipperTD's comment below. I can't add anything to it but it sums up how I and I'm sure how the many kind and knowledgable people who frequent this forum feel too.
The important thing is that you're sharing with others who are, or have been, or will be, in a similar situation to you. They can share their experiences with you. You're not alone.
Don't just bottle it up; keep in touch here. It will get better, although that might seem hard to accept at present.
Thank you. Everyone has been so helpful (and patient with me). It's really touching. I just wish there were in-person support meetings for this (I know the PAS does virtual ones but I sometimes feel it would be lovely to sit in a room and be able to help each other.
As you know my friend my anxiety and depression were very bad at the beginning of my treatment a few months back. When you’re in that place you never feel Like you will be well again, adding to the anxiety and depression. Just remember this too will pass.
By the sounds of it you were just beginning to show improvement. Then extra drugs and extra stress knocked your system. I had similar and Klein said inject daily for 2 weeks and I went back to being well again.
I do think you need to try and I know it’s hard, to take your focus away from your health all the time. Distract your mind as best you can. When I was bad I started listening to podcasts etc just to distract my spiralling thought processes. We can be our own worst enemy when stressed and left to spiral or doomscrolling on the internet. For every person you find who is doing well there will be someone having issues and that can make us panic that if somethings not working for them then what about us etc. Try to shift your focus and ride the storm out, it will pass.
Remember I am about if you want to chat about this or just something random to try and take your mind away from it all. Hang in there.
Thank you, and you've already helped me so much. Managed to visit my son at uni in Bristol today, and until the evening, managed to live in the now and forget my symptoms for a bit. I think moping around at home reading constantly about b12 experiences can be so comforting at times, but unhelpful and dispiriting at other times.
I can't tell you what will be the right way for you, but your instincts kind of point in the direction I went back then, when I was in a similar situation. I had panik attacks every day. Never have had any before my b12 got so low. I pretty much locked myself in with my injections and kept sticking to the treatment protocol. No matter how bad I felt. Because I was convinced that looking for yet another doctor to help me or staying in a ward and stopping the b12 would make it even worse.
One time I had to go to a doctor because of a whole different thing and I crashed after.
Do you have any medication you can take when it's really bad? I had a tranquilizer prescribed that took a bit of off the edge sometimes.
Thanks. Yes, the Crisis team prescribed me diazepam, but I try not to take it very often (in part because it sometimes seems to make my anxiety worse) but also obviously because it's very addictive. I was also prescribed propanalol, but I found it made my (then terrible) breathlessness worse. If my breathlessness settles down I may try it again. I realise that neither of those are ling term solutions, but equally I'm hoping they may be enough to help me survive until the anxiety symptoms at least start to lift, hopefully in the next few weeks.
Please never feel that you need to apologise for asking for help. It’s important that you do.
I had a colonoscopy about 5 weeks ago and I went from being able to lead a reasonably active normal life to being low, crying, full of anxiety, terrible gut issues with diarrhoea and gut cramps and dreadful headaches.
I increased my B12 injections for about 4 weeks and also B6 and that helped my mood.
I drank a collagen based complete gut repair supplement from Happy Mammoth combined with one scoop of Amino replete and I drank grass fed bone broth. My gut is now back to what it was and I am taking homemade kefir and homemade kombucha and I am sprouting seeds and growing micro greens to improve my vitamin intake.
You are at a crossroads it seems in your health - you know what you and your body doesn’t want. So you must give it what it needs and also what I suspect your wife and son need and that is a map to improve your health.
The route of self treatment can be positive and rewarding - growing micro greens and sprouts is easy, enjoyable and the whole family can join in and enjoy them. The brewing of kefir and kombucha is cheap and again beneficial - a healthy gut is a healthy mind - start looking at foraging so you actively exercise and walk in the outdoors - good for mind and soul - start with safe easy foraging such as blackberries, elderberries, windfall apples etc - don’t do mushrooms 🤪🤪🤪🤣 Get involved in preparing food so that family time is created and you keep busy - I found inactivity pulled my mood down. Sometime I thought too much.
All above is what I do to keep me and my family together - they now journey with me and have got used to mums whacky brews all over the kitchen.
Autumn is approaching and so it’s fire cider time - layers of herbs, onions, apples, oranges, ginger, garlic etc in apple cider vinegar - immune boosting stuff - we take a spoonful daily to keep colds and flu at bay . We then strain out the herbs and things dry them and grind up as a seasoning. It’s something we do now as a family.
There are some great groups on Facebook for all these things and I am a member and learn from them. This is how I got myself out of the deep, dark and lonely hole of B12 deficiency. I still cry sometimes, I still have low days but for 80% of the time I feel I am making steps to get my health back.
I am sure you will too because you have taken the hardest first step and that’s asking for help. PM me if you ever want to talk.
Thanks. That's so true and so helpful. I'm lucky in that I'm a smallholder (we have 20 acres of land behind our house) with a small orchard and some hedgerows and ancient woodland. The walk from the house to the orchard, and sitting on a bench watching nature was my salvation in the early part of my symptoms a few weeks ago, but in recent weeks I've found it hard to get as much comfort from it - My anxiety was just too bad. But I think you're right - I should try to heal myself naturally where possible. One of my many symptoms with the b12 deficiency was loose bowels every single day for 6 months (I know, too much information). However, despite my almost total loas of appetite for 3 months I have actually in the last week or so been eating kefir every day, and things steadily seem to be improving. I do like kimchi, and with an Austrian mother I was the only kid on our suburban British street who ate sauerkraut on a regular basis! I may take you up on your PM offer, which is really kind of you.
I remember when I was struggling - I thought they must have missed something because both mentally and physically, I felt really ill and yet neither the GP nor the nurses seemed to be that concerned.
At one point, my mum (virtually housebound due to angina) got my sister to drive her around the streets to find me. I just needed everyone to leave me alone at the time, so when they found me, I talked to them, apologised, but still needed to just get away from people for a bit - even those really close to me. My mum, bless her, offered to talk to my GP for me.
Don't give up.
Eventually, I started to get better. But only once I was on the right frequency of B12 for me. It was slow and not always linear, but along the way, my GP diagnosed me with functional B12 deficiency, which meant that I was given 2 injections a week. It still took 3 months before I felt the injections - I no longer had to ask the nurse if she was done yet ! That was December 23rd 2016 - a Christmas present to me. It was the point at which I started to really believe that, yes, all of this was due to vitamin B12 deficiency - and it really can be that bad.
This is not easy to get through, not easy for friends and family either. I could not have managed without them, without my incredibly determined GP - and with all of the people here who helped me with stories, advice, links to research, suggestions. They care and they make a difference.
By the way, the GP and nurses were concerned. One nurse later told me I looked grey at first. The GP was e-mailing back and forth with consultants, trying to get advice on effective frequency of treatment while also referring me to secondary care to rule out any other possibilities: Coeliac disease, bowel cancer etc. Some of the nurses were more concerned about the 2 injections a week requested, thinking they were overdosing me ! They were only ever used to a regime of one injection every 3 months ..... one told me that she Googled "toxicity and B12" which reassured her completely, as the only results were about treating toxicity in emergencies with huge amounts of B12 !
I now continue with the 2 injections a week myself. I started with EOD for about 2 years before feeling comfortable about reducing down. My GP continued to monitor my folate, ferritin, vitamin D (I have osteoporosis) and thyroid, but never my B12 : "Pointless".
Monitor your symptoms daily- make a simple chart of the symptoms that are most frequent/severe/obvious/life-changing for you, when they occur, for how long they stay, when they go and how that relates to your injections. This sounds like a lot of work, but will help you to see minor improvements, and could help you to see a pattern forming. I did not realise that some of my long-term problems were even related, until the injections improved them. My GP told me when I started it that this was "bordering on the obsessive" and I told her this was sheer desperation. Later, it helped me, on a bad day, to look back and see what a bad day once looked like - way worse !
I gave up after about 7 years: no pattern at all, but some incremental improvements, some symptoms went completely (although can return if I try to reduce injections or forget one) and some are randomly cyclical - but I don't ever need to sleep for 14/15 hours any more.
Be patient with yourself, talk to your wife when you are having a good day (and you will have one) about what it feels like to be you on your worst days. Get help and support - medical too. Find a GP you can talk to, one you trust. They don't need to be a B12 expert.
Thanks so much for that. I had started to keep a symptom diary, but stopped when I got too dejected. But i must start doing it again. Some small things have improved, but of course many get worse again before getting better. For me I feel if I could just get rid of the psychological symptoms, I could cope much better with the physical ones. Unfortunately I've yet to find a really sympathetic GP or consultant (apart from Dr K), and despite the raft of scans and tests I've had, some of them via eminent consultants, most if them still refuse to believe symptoms are caused by B12 deficiency. It's so disheartening and lonely to feel the medical profession thinks it's all in your head!
We both have the same medic in our corner. The chances of finding another are slim so don’t waste your time - if one comes along great but they are like hens teeth.
How often do you self inject? And what cofactors do you take? From what you’ve said so far it seems that you need to keep the medics at arms length as you seem to understand your body and its needs very well. You only need one port in a storm and you have a medic to be that port.
I think that the symptoms diary you keep will one day be a reminder of how far you have come, even if it feels like slow progress. It is also a useful record for when you see someone who shows an interest. It is also your proof.
Quite apart from the symptoms progress chart, I also wrote two lists for consultants: one of my physical symptoms and a brief description of how each affects me, how it feels. Just a sentence or two. Then another similar list for psychological symptoms - confusion, sensory overload, memory issues and other mental problems.
My choice whether I showed them to anyone. Sometimes I showed them both or just one - or none at all, if pointless.
The haematologist who told me that B12 was toxic, carcinogenic and highly addictive got both. She asked if she could photocopy them - for her files ! Let's hope she learned something. (I suspect that even she did not really believe what she was saying.)
Disheartening, yes. But in this case, mainly just insulting.
Im so sorry. I Think the drugs had a reaction on you. I had a terrible reaction to Dilaudid® I was violently throwing up. Shaking all over, very anxious, depressed, crying, major headache and more, for 4 days. I was very scared. If you're b12 journey has just begun, give yourself time for your body and system to repair itself. If you've only been treating yourself for 5 months or so, less than a year, you're probably still reversing out and experiencing your body getting used to having B12 again. Things will calm down and they do get better. You're going to have to get used to which drugs you can take and which ones you can't. It's a process of trial and error unfortunately.
This is a very misunderstood condition. Family and friends often don't understand what's wrong with us. A lot of us become very isolated because of this condition. We find it difficult to juggle a lot of stress and stuff coming at us. But it gets better.
I find it easier to be alone than to explain why I am the way I am. This condition can make you depressed and very anxious. It is a major symptom. But B12 helps with this very much. If you've just begun your journey you need to give yourself a few years believe it or not. I'm 3 years into this and I struggle with anxiety very much, but it is way better! And if you have any outside influences going on in your life it makes things even worse. It is very unfortunate that family and friends don't understand this condition and we feel very alone because of it. But you are not crazy. It is the B12.
You're here seeking help for yourself, which means that you have a conscience, which means that you care about the people around you and how this is affecting them and not just you.
I have very unusual reactions to very many drugs. I can't take any of the types of drugs that you have to be weaned off of. I'm very particular about any of the medication that I take. I don't suggest that you take antidepressants. Especially the ones that you have to be weaned off of. I take a non-narcotic medication that helps with my anxiety. It's a nausea pill actually, and it is not addictive and it helps with anxiety. They gave it to me 1 in the ER when I fell and started throwing up really terribly and having a terrible headache and shaking all over. I refused any kind of medication, but they promised this one would not hurt me so I took it in it really did help me a lot. I have a hard time taking anything for stress.
What they have me is called hydroxyz HCL 25mg. You can take this at the time that you're feeling anxious. It's something that you can take right then and there when you're feeling anxious it is not addictive you don't have to be weaned off of it you don't have to take it for life, it's a situational kind of thing that you can take until your anxiety passes. It sounds to me like your body is reversing out and that you need more time since you only just started ED injections.
Now you know you have a bad reaction to that type of medication. you could ask your doctor what family that medication is in and then stay away from that family of medications. It is not unusual to have reactions to meds. our immune systems are completely out of whack. If you could find something that works for you then stick with that, but it is a process of trial and error and a bit of a scary process because you don't know how you're going to react to anything. But now you know that drug doesn't suit you so don't take it anymore. I take acetaminophen, Tramadol, and that anxiety med if i need it. I cannot take gabapentin I cannot take Cymbalta I cannot take any of those pills that you have to take on a regular basis and then wean yourself off of.
I wish you well. A lot of the times it helps for your family to read what people write to you on here. They understand a little more when they see that other people go through the same thing and that it is a normal symptom of B12 deficiency to have depression and anxiety. But it will get better.
Its been 3 years for me and I find myself much more peaceful now, even though I have anxious times (crashes), I am much more at peace. I inject daily. Sometimes I forget but daily injections helped me with the anxiety and depression. On really bad days during my crashes, I've injected multiple times per day.
I’m sorry that you are continuing to struggle. The path to recovery is a long one and it’s not linear—expect some curves along the way. Keep up the regular injections. You may find increasing your dose helps. I switched to German Pascoe 1500mcg during the US shortage and when I went back to the US Actavis hydroxo, it wasn’t working for me. Upping the dose to 1500 mcg is showing some improvement and I feel like I’m heading towards full remission.
Fentanyl is a heavy hitter. When my b12 levels aren’t optimal, I can’t even tolerate a minuscule amount of caffeine. Absolutely sends me over the edge. Drugs can definitely have an effect. If you’re drinking caffeine, try to stop or try to cut back.
I did not use any sort of drug to help me relax when I was recovering as I was worried about a rebound effect—which sounds like what you are describing. Sure you get some short-term relief, but I feel like that may make it things more difficult in the long run.
If you could get on a SSRI that works for you, that would really help you. I know you said you can’t right now. A six month course of an SSRI helped me until I could make progress in my recovery. Doing yoga/meditation seemed to help me with anxiety before I was diagnosed, but with a medical cause of anxiety—expect minimal impact.
Remember—your mind is trying to play tricks on you—don’t let it! Continue to share your feelings with those around you so they can help you if necessary. When I felt like I was losing my mind, the last thing I wanted to do was tell anyone and I didn’t. That’s a dangerous scenario.
You are doing all the right things. Stay the course and keep your head up. Your brain needs time to recover and it will. Hang in there and keep us posted. Take one day at a time and don’t look ahead too far. You just have to get through one day at a time.
Crumbs honeybun,Big hugs all round to you and the family.
Sounds like a monumental turd of a day or two.
Clear neurological issues, sue the NHS for not following protocol! Bastards!!
Well done to you for getting through it and keeping going with the injections.
Make sure you are getting enough vitamin D.
Milk thistle is an anti inflammatory with liver cleansing powers. Might be worth a try. I just started taking it today and felt brighter.
Or it could have been the fact I did a fast and then ate non starchy vegetables plus olive oil for most of the day, in a bid to lower blood sugar and generate the healing powers of autophagy.
If you had toxic crap + fast it will have sparked a reaction. So it's not you, it's the chemicals. It will pass.
Thanks for the encouragement and the empathy. Today has been truly horrible and I'm not sure how I'm going to keep going, but I guess I have to somehow. This is the cruelest affliction.
One day at a time. Breathe. Plan a nice day in nature, for very gentle exercise. Relaxation is very important for healing. Maybe put any further medical investigation on hold until you give the B12 a chance to rebuild your depleted system. Epsom salt long hot baths. Vitamin D supplements essential. Do try the milk thistle tablets.
Are you taking folic acid or methylfolate? I found the methylfolate to be more effective, but it did send me a bit paranoid. I just think when the brain is mending, weird wiring happens.
I was looking at more stuff on autophagy, fasting and going protein free for a day or 3. Make 2 meals a day non starchy vegetables with extra virgin olive oil. Just to enable the body to flush out damaged protein. Guaranteed we all have lots of badly folded protein, because B12 is at the heart of DNA replication. It's the damaged proteins that cause lots of trouble, including in all the forms of dementia. I have psoriasis externally and I'm pretty convinced it's internal too.
I got digging on the allotment today and planted garlic, that'll help keep the Halloween vampires away at least. Tired now, but feeling much more positive than I have in ages.
Thanks. Funny you should mention the folate. I'm starting to wonder if the folate is building up in my blood but swimming around unutilised. When I started self-injecting b12, 7 weeks ago, my folate level was 2.6! But only 6 weeks later, if was above the upper limit (>27) of the labs. A blood test at the hospital a few days later gavd the same result! I've been taking 5mg folinic acid every day. I switched to a much lower dose of methylfolate for a few days, and felt a bit better. I'm going to get another folate test done this week, and if the level is still high (and I've been injecting every day this last week) I think I may drastically cut down my folinic acid for a bit, and see how the injections use up the folate. I believe excessive folate levels can give similar symptoms to low folate, and certainly I seem to be a lot more anxious after 5mg folinic acid.
So whatever you make of all of this, it is obvious that people here care about you.
Keep talking to us. Anyone, someone who makes sense to you.
I started by reading, and taking note of, people who seemed to have the same or similar symptoms to myself. People that came out the other side, or at least managed their condition better than I was able to at the time.
Thanks, that's good advice. Just like any public forums (e.g. car ownership) on places like Facebook, the people who have the worst experiences post the mist, whilst those who have good experiences are too busy living life. So it's important to find people who've gone through similar experiences but with positive outcomes. I've also been very lucky that certain people (eg. Gobbozoid on this forum) have reached out personally and contacted me directly to chat and offer me hope.
Thanks to you, and all the other kind people on here who put up with the stuff I post, and offer help, advice and love in return. I cannot tell you how much it means to me. It's literally a life-saver for me.
Many on here are very unwell themselves, some are no longer young yet they still find the strength to reach out to other's. Your sharing your reaching out and finding the strength to do so. Your sounding more positive so hang in there. I hope your brother and friend have arrived to give your wife a bit of restbite. I hope you can feel the warmth that's being sent your way.
Current Trial; 1.5mg methylcobalamin 3mg/ml, 1.5mg adenosylcobalamin 3mg/ml, 1.5mg hydroxocobalamin 3mg/ml. SC injection 5 times a day. 50 mg B6 in the form of P-5-P three times a day for pain from peripheral neuropathy returns. Benfotiamine B1 300 mg 5 times a day. 2000 mg Magnesium L-Threonate twice a day to prevent muscle cramps. Betiane 5 times a day total 20 mg.
“Betaine is used to lower homocysteine as a substrate for betaine‐homocysteine methyltransferase, which can convert homocysteine into methionine.”
I first came across betaine in a case study done in China 1.5 +- years ago. In that case study the EOD concept was abandoned. I saw the study as progressive and that caused me to do a trial of 2 g once a day. And continued for 6 +- months. I discontinued it with no noticeable adverse effects.
I have never had a test for homocysteine level although I asked one to be done. I would have acne like bumps that tended to reappear in the same place. With my increase in B12 these bumps only appeared with an increase in B12 and then for less than a day. They disappeared altogether.
I started another trial of 4 g per day spread over three doses which was the maximum based on the information I had. This was effective in reducing my ‘stuffy’ head which for short periods went away. This is a huge deal and I have been working on it including unclogging my Eustation Tubes.
I weigh 82 kg (82 X 250 mg = 20,500 mg = 20.5 g/day per above quote.)
I started a trial of 1.5 g 4 to 5 times a day for a total of 6 g to 7.5 g.
I continued this trial for 4 days. The first day I woke up in the night coughing up phlegm,and felt awful. I attributed it to having swum in a cold lake a bit too far. Since then I am still coughing up a bit of phlegm and my stuffy head and fluid in my eustachian tubes is gone!
My clogged eustachian tubes started about 5 years ago and I mistakenly thought it was swimmer's ear. I did get relief from treatment for swimmers ear until the end of the summer of 2020 and then ended up in the hospital in November 2020. I also had temperature regulation issues after swimming.
I started a trial of 3 g 4 to 5 times a day. For a total of 12 g to 15 g. My prognosis was rapid improvement and that is what happened. Guessing my reaction to the current trial could have been avoided at 20 mg per day.
I have just started a trial of 20 mg per day administered throughout the day.
I will likely have in a few days enough information and have
The results have to be taken in the context of the amounts and frequency I am taking and my current trial.
The above was written a few months ago. I have come to find that the medical field does not use healing as a criteria for healing and that they error on the side of no risk to them. Not a criticism just my evaluation. The concept of the white knight saving people does not often apply. Mediocrity is the goal and the brand is caring more than they actually care.
sorry you’re having such hard time. I recognise the symptoms and it reminded me that general anaesthetics deplete b12 and rebound depression and anxiety from opiate withdrawal is common.
Don’t forget your general nutrition as well,
Vitamin d, folic acid, ferritin all have an impact on your mental state, I have improved a lot with regular vitamin d which also was negligible when I was diagnosed with PA. I also take 5 ht which has helped as I don’t think I digest anything very well and your gut makes alot of neurotransmitters
Sounds like you have digestive system problems, this is fundamental to sort out for mental as well as physical health
Think about caffeine intake, general quality of your diet, exercise, sleep quality and social support.
Causes of Anxiety and depression are multi factorial and it is worth looking holistically
Don’t be in a rush to solve everything at once take it step by step.
Wishing you all the best, it’s a journey alot of people will relate to and this forum is an excellent source of support so keep using it
Thanks so much. Ironically, was eating a pretty healthy diet before all this hit and I crashed. Now, I've had no appetite for 3 months (lost 14kg/35lbs). I'm seeing a naturopath/nutritionist for a full workup and hopefully he can help me a bit as well.
In terms of dietary advice I would recommend you see a good registered dietitian rather than a naturopath - there are some good naturopaths out there but many do not understand nutrition science very well and may gave you poor or unsound advice. This is less likely with a registered dietitian although there are exceptions there too.
1. I had a video consultation with Dr Klein yesterday, explaining my current extreme neuropsychiatric symptoms. He told me to reduce my injections to twice a week, to see if my symptoms lessen a bit, and to switch from 5mg folic acid every day to 800mcg of folinic acid twice a week. Not sure if this will help, but maybe injecting every day (which I've been doing for the last week) is just too much for my body to deal with. Too much healing in one go? I can only try.
2. Consultant gastroenterologist confirmed mesenteric panniculitis seems stable, and that the colonoscopy and gastroscopy biopsies were fine but confirmed duodenal inflammation. He's prescribed omeprazole twice a day for a month.
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Red itchy spotty rash
b12 injections reaction? return of old symptoms? another deficiency?
Internal Medicine Specialist appt
So nervous and upset.
Worsening symptoms despite injecting 2mg B12 daily 
