Does anyone here with PA/B 12 deficiency suffer with neurological effects such as mini anxiety attacks. Never experienced anxiety or sporadic nervousness until PA. I would be so grateful if someone could suggest something for the nervousness and anxiety. I've seen therapist for the anxiety but they are always trying treating it as problems in my life that's causing this but it's not IT IS purely clinical. I tried to tell them and they cannot connect to dots between PA and the anxiety. SO FRUSTRATING! Then when I tell the hematologists or neurologist about the nervousness and the anxiety, they refer me to a therapist that knows nothing about PA. Thank you for listening and have a peaceful night guys
Nervousness: Does anyone here with PA/B... - Pernicious Anaemi...
Nervousness
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25092
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I went to A and E once.They told me I was having sn anxiety attack
Also thought I was on recreational drugs as my pupils were dilated .
I'm now sure in Hindsight theh thought I was Pretending i couldn't walk straight of balsnce.
Neither was the case !!
I used breathing to ride the wave .
Smelt lavender essential oil.
Didnr have coffee or any alcohol for over 3 1/2 years either.
I can get occasional waves that I now recognise as the autonomic sort of response gone wrong / in overdrive.
Fight or flight.
Only very occasionally now.
Can feel 'wired' after a b12 injection .
Not often now.
Perhaps you need more b12 ??
Has your folate ,iron,ferritin and vit D been checked?
Are you on any medication ?
I've turned down so many antidepressants as it's not clinical anxiety of depression.
But till enough times was starting tk wonder.
It wasn't and isn't
Some drugs are helpful as dampen your nerves .
Otc nsaids .
Lije you say though treating the cause and management needed.
It is a symptom of b12 deficiency .
On the list .
Thank you Nackapan, I am so grateful for the responses I've gotten from you over time. You asked was I on medication? And yes, I do take thyroid medication but I don't drink coffee or alcohol? I do take iron, folate and vitamin D but I haven't got it checked in a while, so maybe I need to do that. Thanks for bringing that to my attention. When I first was diagnosed with the PA I had long bouts of anxiety attacks and nervousness trembling and as I started to get my B12 shots it went away and now I have no clue why it's back, because my treatment is the same Same amount of B12, same. medication, so I'm just not understanding why. And like you Nackapan I've turned down so many antidepressants they throw my way. I'm so exhausted. I'm so lonely. I really don't even do any socializing anymore because of the nervousness. When my body is going through this it's just pure sadness and isolation. Sorry for sounding whiny but I'm looking for some kind of answers guys. Have a peaceful blessed day
The best thing is to get more B12. And if you've been dosing the same way for a long time, there could be some other changes or blood levels to get checked - maybe vitamin D, or other B vitamins like B1 (Thiamin). Taking a high dose of Benfotiamine may help to calm down, and magnesium can help too.
I had all the neurological/psychiatric symptoms when I was in the throes of deficiency. The only medic who got it was a very kind paramedic who came out to see me when I was having a panic attack but was also troubled my nervous system dysfunctions in my spine. Of course there was nothing they could do to help me at all, but it was reassuring to me when they said 'it's systemic, isn't it?'.
Somehow, the paramedics were far more open to the idea of B12 deficiency causing these problems than a regular Doctor. I suspect it's because Doctors only refer to their medical training. And most of that training doesn't include nutrition or B12 deficiency.
Try to focus on sleep and reduce other stressors in your life. Get more time to center yourself and go for long walks everyday. The body needs a holistic approach to healing which includes the pillars of good sleep, a well planned and nutritious diet, regular and appropriate exercise (not too much/hard and not too little) and minimal stressors.
You may just be a bit out of balance. But my hunch is that your B12 has fallen and I sympathise with how awful that can make you feel in terms of anxiety and worry.
I feel same
I'm so sorry Surviorette, I don't wish this on anyone. I'm praying you feel better soon.
I'm so sorry your so lonely and isolated. That seems to be what we all do. A lot of us isolate ourselves because people just don't understand this condition and we're not in the condition to be around other people a lot of the time. The anxiety and the nervousness caused by PA B12D can go through the roof. I suffer from it terribly. This last Christmas was very hard on me. I went through about 3 months of really deep depression, sadness and anxiety. I have so much anxiety that I clench my teeth so hard most have broken. I've had to have them capped.
PA B12D is definitely the cause of your anxiety and depression. You probably noticed that even small sounds and light might be very irritating for you. That happens to me I get very sensitive to sounds and light when I'm that irritated and that anxious. My whole body is in a flare-up and you just want to crawl out of your skin. Sleep is difficult and sometimes you sleep a lot. And it is important to eat a balanced diet. I tend to crave sugar when I'm like that. Not always great but it does kind of help me sometimes to have just a small something sweet. I don't know why. But less sugar is better for you.
I write everything down in my daily diary. I don't write every day but I do try to keep track of what's happening to me. If your symptoms are getting worse you need more B12. I don't know how often you get your injection but for me I have to self-inject because one injection a month would never be enough for me. I would be depressed and anxious every minute of the day. I can't be around other people. I just completely shut down and isolate myself from everybody. It's extremely difficult and I'm so sorry you're dealing with it.
It's not going to go away with antidepressants. You don't need more pills you just need more B12 and rest. I inject every day and if I have a bad day where I'm very very anxious and very depressed and very short-tempered and easily irritated with even the slightest sounds, then I have to inject more than once in a day.
This is not the kind of anxiety and depression that you can actually control with your mind. It's so far out of your control there's nothing that you can do for it except for take B12. That's the only thing that helps me. I wish I had better news. But at least you know you're not imagining it and at least you know what it's from. You're not alone. Good luck. Hang in there.
I agree with Pickke 500 . You are probably not getting regular enough injections . If that means self-injections , as there may be no help from your GP , it’s no big deal .
I definitely get this from time to time when b12 is due, weird fluttery feeling that comes on for no reason like when you're sitting waiting to go into a job interview! I don't really have any advice to add to what everyone has already said but hopefully reassuring to know you aren't alone. Definitely consider taking the other supplements mentioned may be your folate or iron are low and effecting your b12. Good luck and take care of yourself
This is such a difffcult thing to cope with. I also experience this symptom; in the months before my (late) diagnosis, my gp was actually cross with me because she insisted my symptoms were anxiety related but I would not take anti depressants as I knew it was something else.
I self inject about every 2 weeks but still get anxiety symptoms as well as other pa symptoms. I would self inject more if I did not hate needles so much.
It can feel such a lonely condition to cope with having to manage and treat it yourself. Hopefully, all the research and work being done by the Pernicious anaemia society will eventually give us the treatment and understanding from the medical profession that people with other conditions get.
25092• in reply to
Yes, I agree 100 percent CERD2 I will be cheering for all of us.
I get this but not consistently. I’ll be fine for ages and then suddenly my anxiety goes through the roof. I know it’s a physical thing because at the time I know I’m not actually anxious about anything in particular, it’s just this horrible jitteriness.
I had it badly before I started getting B12 jabs and the jabs seemed to fix it but just occasionally it pops up again. You have my sympathy as it’s horrible.
Thank you so much LauraJane2. You are so right. It's horrible, horrible feeling. Have a peaceful day.
I have had exactly what you describe as a key symptom and still do at crazy moments like not being able to locate my diary this morning and only just avoiding minor panic. The fight or flight always hovers. From what I’ve read, (at the moment The Inflamed Mind by Edward Bulmore) it’s all about the inflammation attendant on so many autoimmune states.
Breathing does help. 4 in 6 out. Very gentle restorative Yoga. I have an online class I could recommend if I knew how to do that directly on your email. Tai chi. Rest. Friendly people like this support group who know exactly how it feels. Going outside and remembering the breath. Gentle walking. Sunlight. Belief you will recover one day soon, step by step.
Wishing you calmness.
Thankyou for that reply Yervaud. I think you sum up the situation completely.Although it's important to establish causation I sometimes think we then hyper focus on just this. I think most of us on this site agree- as much b12 injected as possible helps enormously but it's also about how we lead the rest of our lives, the whole mind and body thing.
I dont think we can ever completely irradicate PA symptoms we need to easy symptoms in the ways you describe in your last paragraph too.
I shall certainly have a look at the book you mentioned.
Yetvaud you are a breath of fresh air and I thank you for the good sound advice. I do my yoga in the mornings but when the fight or flight panick moments hit me it's so hard to remind myself because the moment pulls you so deep in, but I did notice childs pose is very helpful if I can pull out enough to do it. Also I want to thank you for book title. I will try to find it. So sorry you've experienced this. I'm cheering for you.
Hello, I had exactly the same symptoms and was also working with a therapist to no avail. I had even developed phobias about things that had never bothered me before, such as highway driving. My therapist had tried everything and told me it was time to ask my primary care physician to prescribe an antidepressant.
I had been injecting every other week for a few years but was never able to become symptom-free until I went on a weekly injection schedule. Though I began to see improvement within 2 weeks, it took 1-2 years of weekly injections to realize substantial improvement. My therapist was astounded at the quick response after my injection schedule was increased and I was able to discontinue seeing her in no time. She said that the change in me was quite dramatic.
For the first time since diagnosis in spring of 2016, I consider myself in full remission of symptoms. I’m still not perfect and I don’t think I will ever be the same as before this all started but I think I am as close to it as I will ever be. Best of luck and I hope you find some relief soon. The restlessness, anxiety and panic symptoms are absolutely torturous but there is hope for relief. Making sure that you get the b12 your body needs to fully recover is key.
mcg-woo, it's like you are reading from a chapter in my life with what you've described. I also started to develop fears that normally wouldn't phase me. I'm so glad that you are not experiencing this anymore. Thank you for giving me hope that this will just go away. Take care
• in reply tomcg-woo
I wish more doctors would get Pernicious Anemia themselves and perhaps they will do their own research (like we all have to) to fully understand just how important our frequent injections are. I've been told my anxiety is just because I think this disease is causing all my symptoms and my blood level is "adaquate" .... My blood tests for B12 have been the day after an injection!! Of course there will be tons in my bloodstream then. What my body does with it is definitely another matter. I start to go downhill after a week but have to wait 3 or 4 weeks for my next inection. I'm sure the doctor thinks it's just to humour me.
mcg-woo• in reply to
I completely understand your frustration. I crashed a week after receiving my first injection and it was a long journey to finally obtain adequate injections. I have done remarkably well on weekly injections for over two years and I feel like I am in full remission of symptoms for the first time since my diagnosis in 2016.
From my experience, even if you are receiving monthly injections and go without one for 2-3 weeks, your b12 levels will still be so high that it will be off the chart. The only times mine weren’t immeasurable was after diagnosis when my levels were low and I received only two monthly injections, no loading doses (400’s) and then again when I received weekly injections for a month (600’s) after I stopped injections for 3 months. Any other time my levels were checked while receiving injections, levels were over 2,000, which is the highest level the test can detect.
I live in the US and am lucky enough to have a doctor who did some research on my behalf and understands that some people need more frequent injections than others. I just had a check up a couple of months ago and told my doctor that I feel like injection frequency isn’t a perfect science as I feel like some weeks I could go longer than a week before an injection and others I feel like I need an injection before the week is up. She just said that makes sense and to remain on the weekly doses. Weekly injections are very aggressive treatment as the US standard is monthly injections.
I know that I am very fortunate. I wish that physicians were more informed and that others didn’t have to suffer because of it. I clearly needed very high b12 levels in the blood to reach the tissue level to finally get better and then to maintain those levels to remain in remission.
There is nothing worse than a doctor who doesn’t listen to their patients. You may have to consider self injecting to get the treatment that you need. Sad, but true. I have been self injecting IM for six years. I hope that you get the treatment and relief that you deserve!
• in reply tomcg-woo
Thank you, mcg-woo. Yes, you sure are lucky to have found a doctor who will listen and understand.
25092• in reply to
Even in that movie, Could it be B12 by that ER nurse Sally Patchlok, a doctor had pernicious anemia and he didn't even know what he had or how to treat it. Jeñnyettie, they are clueless and then to add insult to injury they start to tell you the symptoms you're having has nothing to do with B12 because your test comes back in range. Duuuh.....of course you just had a shot. I've gotten to a point I don't expect anything from them but my prescriptions and labs. A lot of people here. self inject because they need it far more frequent than the doctor will prescribe. In between your shots, have you tried sublinguals solgar? Some people can get results from the sublinguals and some people can't. If you get a chance check out that movie. They give some insight on pernicious anemia B12 deficiency denial but it doesn't go far enough at all. Take care and I'm cheering for you.
I didn’t know about the movie but I read that book and took it to my doctor. I really think that may be why she took the initiative to do some research and also she really wanted to help me. She’d seen me at my lowest after three months without an injection taking high dose b12 sublingual only and I was a wreck. I felt like I was losing my mind and barely managed to drive to my appointment.
The change in me after regular injections has been dramatic. I can only imagine what it must look like to her. Thank goodness there are still some great doctors who went into the business for the right reasons! Thanks for the tip about the movie. I’m going to watch it. Best of luck to you!
• in reply to25092
Thanks for that. Yes, I have watched the movie and put it on my Facebook for my friends to watch but most of them didn't. They don't understand either. I do have a sublingual spray and also melting tablets. I double dose and feel a little better when I do but unfortunately I haven't formed a habit of doing it. I notice when I haven't for a while so yes, they obviously do work a bit. I'm not so tired and depressed when I take them. But the neuropathy doesn't improve...only just after my injection for a few days.
😩sorry you are getting these horrible symptoms , I agree with most of the above replies, if I wake up feeling jittery after eating I go for a walk even if its just to the end of the road and back it seems to clear my head and put things in perspective, I also do breathing exercises and a bit of meditation can"t say anything works greatly but they all seem to help a little. Plus I do know some meds can cause anxiousness one of my blood pressure tablets did I used to wake in the night feeling very threatened but it stopped a couple of days after stopping the tablets. Hope you feel better soon
Pitney do you mind me asking what was the name of the blood pressure med that was making you jittery? The reason I'm asking is dr. just put me on blood pressure medication. I already take thyroid medication
They were Amlodipine, but whatever you are taking have a look at the side effects on the enclosed leaflet with your tablets . Best wishes
Oh my goodness! That is exactly what I am prescribed Norvasc, generic brand Amlodipine. Thank you for that. I will ask for a different pill for my blood pressure. Even though I was having the nervousness before being put on the norvas and this might not be all of what's causing the nervousness, but every little bit to do to curb it helps. Thanks again!
• in reply to25092
I was first prescribed Norvasc. It seems that's what most doctors go for first. It gave me a dry cough so now I'm on Candestartan and that seems OK.
My blood pressure medicine also causes depression and anxiety. So along with the B12D PA and blood pressure medicine you've kind of got a couple things going against you. But it is manageable with enough B12. And self care ie. good diet and fresh air and rest. I started painting so I could get my mind off of my anxiety and depression and it really helps. Doing something creative or doing something with your mind and your hands really helps to keep your mind off of it. I do realize it can get so overwhelming so overpowering sometimes that it seems nothing helps. B12 is the best thing you can take for it. One time my anxiety was so bad, I didn't want to scare my dogs anymore than they already were, so I got in my car at 2:00 in the morning and I drove out behind my town to the country cemetery and sat there and screamed at the top of my lungs and cried for hours. I felt so alone so scared. And I had so much anxiety I didn't know what to do with my body, I was shaking all over! All I could do was just scream. I was so desperate. So there I was sitting in my car at 2:00 in the morning in the dark cemetery screaming and crying like a crazed lunatic.
B12 was the only thing that helped me. Sleep was nearly impossible. Also restless leg syndrome was happening. My entire body was restless. The fight or flight is one of my worst reoccurring symptoms of PA.
I think one of the most important things that I have to do when I'm like that, is to tell myself that it is just the B12 talking. That I don't really feel like dying, that I am really not this depressed that this will pass. And not to listen to what you're thinking and telling yourself at that time. It is just the B12 deficiency talking. It's very important that you don't listen to your negative self when you're like that. Your brain is not in its right mind and it thinks things that it shouldn't. It is quite the personal battle to overcome. Hugs and well wishes to you.
EllaNore I have read your post three times because I've been there. I'm there often. And you're right. It's so trying but my heart just cries for you. Just the visual of you sitting there in the cemetery crying alone breaks my heart, really breaks my heart. I went to a park to do the same. Just crying, screaming there alone. So, I know the feeling all too well. I know you also mentioned the restless leg syndrome and it got to a point where I couldn't even stand the sheets on my legs. PA and all its woes are so hard to bear or understand and you're so right you have to tell yourself it's just the b12, it's just a B12, it's just B12., This too shall passI'm so cheering for you!!!
Thank you 25092! I am sorry you understand all too well. For the restless leg syndrome and the painful feet, I put two sticks at the end of my bed to hold up my sheets off of my feet. It is working great. They have bed guards that you can buy but I just made one. Here is a link. It has been so great not to have the weight of my blankets on my feet!!!
Today I woke up and I feel pretty good. I have a doc appointment this morning 1.5 hours away so I have to leave soon, but just wanted to respond and thank you for your kind words and to also let you know, we have bad days but we also have good days. Today for the first time in weeks, I am having a good morning. I hope you do too. Hang in there. Sending hugs and lots of well wishes. 🦋
Hello EllaNore, wanted to come back and share this with you. Hoping it will help with the fight or flight horrible nervousness feeling we get. It's worth a try, right?Thanks to PA (in our case) lack of sleep, stressed adrenals,, many of us are stuck in the sympathetic or “fight or flight” state. Saunas encourage our bodies to go into the parasympathetic state, which allows us to de-stress, digest, rest, and heal.
If you get time, check it out. I will leave the linktheraluxe.ca/20-mind-blowin...
Hi just a thought, could your potassium levels be low as I think that could cause anxiety?
Yes, many don't realize potassium can cause those type of reactions really bad but at the last testing, levels for potassium was in range although it could change just that quick with my absorption issues. It is such a delicate dance it's hard to know sometimes. I will pop a few potassium tablets and bananas and milk . Thanks Kezdez, You guys have way better solutions, believe it or not then the doctors I pay well. Take care
Cautiously adding I think I read something about potassium levels and B12. Maybe someone knows more about this?
Also, I had and have long covid since March 2020 - which either triggered or uncovered PA a year later. Doctors said my bloods were just fine. It was the Cambridge Nuffield clinic that diagnosed and treated the autoimmune condition. Though like us all, no-one can claim expertise in Longhaul Covid.
Is anyone else in this dual position?
Quantifying how much B12 to take ends up as ‘lots’. Bit of a lottery, life.
All the old medical certainties questioned and it’s our life in our hands, mostly.
Oh my! Yervaud I'm praying for you dealing with PA and covid and that they both will just go away. And you are so right about those doctors. They don't understand what we're going through. I saw on this site to pick PA charity at Amazon when I order and maybe one day they can find a solution to this
Just a thought, are you taking methylcobalamin? I tried taking that type of B12 and found it doesn't agree with me. It gives me horrible anxiety and insomnia, cyanocobalamin doesn't do that to me. Cyanocobalamin erases my anxiety.
That’s very interesting. Reading these replies has me thinking 🤔
I have experienced many of the symptoms described and am wondering if I’ve maybe been too quick to put things down to getting on a bit.
• in reply toTwaddletop
That's the standard answer doctors give you. I'm 77. I know I'm getting older but when I am feeling my worst I know it's the depleted B12 and nothing to do with my age. You can't get younger, just by getting an injection!! But I feel 10 years younger the day after mine. Then age quickly after a week and a bit. Strange, that. 😜
Before I was diagnosed with B12 deficiency I couldn't understand why I was so often so irritable, snapping at people over nothing, etc . I recognized my behavior as irritability only after I started injecting B12, and after reading that neuralopsychiatric and neuropsychological symptoms were often the first symptoms of B12 deficiency to appear.
There are three main things to know about B12 injections. 1) B12 is not toxic at any level. There is no upper limit even suggested. 2) The main risk of B12 treatment is undertreatment. The main reason people are undertreated is that doctors have little knowledge of B12 deficiency with neurological symptoms (as opposed to hematologic - blood -symptoms), and therefore have unfounded fears of imaginary risks associated with B12 treatment. 3) Doctors don't know much about B12 treatment because no one knows much about B12 treatment. Every one of the few medical journal articles reviewing what research has discovered about B12 treatment concludes that research into treatment of B12 deficiency with neurological symptoms is scarce and of low quality: too few subjects; too few variations in B12 treatment amounts and frequency; too brief, running days or weeks or, rarely, months, instead of years; and not sufficiently aimed at improving symptoms associated with nerve demyelination and other effects of DNA not being accurately copied into newly-produced cells. Research is typically aimed at "correcting" blood test levels, which generally are poorly associated with symptom improvement.
The one piece of printed material that I feel is most effective at helping physicians to increase their understanding of B12 deficiency symptoms, diagnosis, and treatment is an article written by physician/researchers for the purpose of informing physicians about B12 symptoms, diagnosis, and treatment, published in a peer-reviewed medical journal. The article is "The Many Faces of Cobalamin (Vitamin B12) Deficiency", published in the Mayo Clinic Proceedings (US). As a B12 deficiency patient myself (not medically trained), I feel the best thing a B12 deficiency patient can do to improve treatment received is to provide the patient's physician with a printed copy of this article. The article is freely available, in its entirety, on the internet.
ncbi.nlm.nih.gov/pmc/articl...
(Click "PDF" in the upper left corner to get the format best for printing.)
I am confident woman, self employed in construction who was known for her calm head when others lost it. Yet I found myself suffering panic attacks at the thought of getting on a plane and having night terrors about buildings collapsing and I felt I had the world on my shoulders when I was wide awake worrying at night. I was subsequently, accidentally (I was lucky)🍀 diagnosed with very low B12, B9 (folate) and Vitamin D levels. I have had 30 doses, mostly self injected Hydroxocobalamin and I am back to my old self - no anxiety, no panic attacks and I am sleeping again - alleluia!
I agree with the other replies - get a full blood test as some things may need a top up, and if the GP won’t give you B12 then learn to self inject. I HAD a needle phobia but I manage it - I don’t look forward to it but I do it every other day because the benefits are more than worth it.
I so hope you get the solution you need. It is horrible but you are not alone with us lot around you!
I'm so sorry you had to go through this. I know all to well the misery you felt, especially the night terrors and panic attacks but I'm so, so happy you are back to yourself. It gives me hope. Thank you
25092 I'm so sorry about what you're going through. Though you may feel isolated, you are not alone! It cab be really difficult to manage the level of anxiety you describe, and then having 'experts' provide unhelpful advice or even invalidate/misunderstand your medical issues can cause even more distress. I've struggled with intense anxiety off and on and at one point I had some pretty intense panic attacks as well - they are not fun.
I agree with other members that it can be worthwhile to get different vitamins and blood levels checked, as that all plays into brain/body chemistry, and if we're not getting what we need, the body and the brain struggle.
One of my top coping tools when anxiety is at a breaking point, is to watch somewhat mindless, fairly low energy videos on YouTube. Something that helps bridge the gap when I feel like life is imploding on me. Some of my favorites include carpet cleanings or car details. Wishing you success and relief in your journey, many hugs!
Same, I was the glue for family and took pride in my ability to get the job done but Cobalt 1312, you nailed it, I'm sending you a virtual hug because you have put into words what I've been trying to convey to family and friends for so long. My husband asks why don't you try to look at a movie or things you use to enjoy but I couldn't (strange I know) With the panic attacks coming one after the other and all of PA's baggage I was exhausted but I did get some sort of a brief out in watching how things are made or like you mentioned, rug cleaning. This sounds strange but it drew me in for those 10- 12 minutes giving my body and mind a break of some sort. Things are better but I'm not out of the woods yet and my dr. just scheduled a vitamin profile. Maybe some answers will come from that Thank you and God camp HIS Angels around you!
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