derealisation

[130396]

does anyone know what causes this feeling?

It’s like when I’m talking with people I’m ok but when I’m in familiar surroundings is large spaces it’s like the distance is unreal - like dreams feel

[Narwhal10]

Hi 130396,

I am very sorry to read your medical history I noted you recently had an MRI.

So, with PA/B12D and other illnesses which have neurological effects, when we are outside and in large spaces, our brain is using things like the horizon as cues.

There are also the sun’s shadows to deal with as well. Our ‘processing’ can be a bit off. So, judging distances, depth perception and peripheral vision.

Some people have to stare at the ground a few steps a head as a way to manage. Due to the varying degrees of ‘confusion’.

I, personally, struggle with down escalators. The other day, we were discussing here about the font on the website being changed to blue.

This can be difficult for some. So, these visual cues need interpreting, processing and integrating with another system in our Central Nervous System (brain and spine) as to where our body is in time and space. This is called proprioception.

Several months ago, I tried walking down some steps which had yellow lines on them. This totally perplexed me. I did not quite know when to pick up my foot and transfer my weight. I did it but looked like a right idiot. Not that I care.

Hope I have explained the science. Neurology is pretty complex. The main thing is to feel reassured. It is a symptom and know how to deal with it.

Best wishes.

[130396 in reply to Narwhal10]

Thank you for replying. I don’t think I’ve explained it very well.

It’s like derealisation. I can see steps and depth of perception ok.

Yesterday I was in the garden centre with my daughter where we often go but when looking around while having coffee the surroundings just didn’t feel real - like very strange dreamlike

[Narwhal10 in reply to 130396]

I apologise, Neurology is a massive and complex subject. So, is consciousness.

A ‘dream like state’ can happen with our brainwaves. So, how relaxed we are. We have 5 different types of electrical activity in our brain. These are measured via an EEG.

In Alpha and Theta, we are very relaxed. Things can interrupt our brainwaves though like low iron levels, low B12, less oxygen, sugar levels or just suddenly becoming extremely fatigued. Or bodies and brain can be telling us that there is a problem but we are in public. So, our mind has been trained to behave in social settings. Instead of us saying to others, Look, I do not feel well. I need to lie down. We persevere, walk to the car, keep chatting and have a lift home.

It is only later, when we try and make sense or analyse what and why it happened. Just be aware of when (time of day) and where it happens. Then you will notice a pattern. However, always know when to get proper medical advice.

😘

[MorningMist in reply to 130396]

I recognise those feelings as a precursor to anxiety/depression. I’d call it disassociation. Where everything feels out of kilter.

[LorraineQ in reply to MorningMist]

Hi I am the same it's not a nice feeling

[130396 in reply to LorraineQ]

Hi Lorraine

Do you know what’s causing this horrid head feeling? X

[LorraineQ in reply to 130396]

Hi I have been told it me being stressed out my anxiety it over the top. I'm going to my doctor today hopefully having my B12 will help. If he gives it to me

[130396 in reply to LorraineQ]

What’s your b12 level get to when the anxiety starts?

Do you also take folic acid?

[PaintLadie]

Isn't psychoses a symptom of long term B12 deficiency. It might be worth a read about for you.

[130396 in reply to PaintLadie]

Are you saying I’ve got psychosis?

[Narwhal10 in reply to 130396]

Not in the slightest.

[PaintLadie in reply to 130396]

No. That is not at all what I said or should I say meant. I guess you got me with the "like dreams feel". I said it would be worth reading about. Maybe to see if that is what you are describing. Your post was really brief. I can't see how anyone could surmise anything from it.

[Gambit62 Administrator in reply to PaintLadie]

PaintLadie while B12 deficiency can lead to psychosis, the symptoms being described do not fit with the pattern associatedwith a psychotic episode.

130396 B12 deficiency can lead to derealisation as well. I'd probably describe my experiences as being more like being overwhelmed and confused by everything and not knowing where to start with understanding everything that was going on. What helped was finding something that enabled me to anchor my focus. If I was navigating my way through town it would be focusing on things that were green as green is a colour I find calming. In the supermarket it was focusing on the beeping of the till as I found it comforting and regular as I wandered around doing my shop.

Without these exercises everything felt really unreal and quite terrifying.

[130396 in reply to Gambit62]

Thank you so much for replying.

It’s hot like this since I had cataract surgery and I became very aware that my peripheral vision was all wrong.

Doesn’t help tgat they put a hole in my Iris so I’m getting a lot of glare & light coming in

[Gambit62 Administrator in reply to 130396]

really sorry to hear that - have you spoken to your GP or optician or was there a follow up appointment after the operation where you can mention it. Don't know how long it has been going on but it can sometimes take a week or so for the brain to adapt to changes.

[130396 in reply to Gambit62]

Had surgery last June. Noticed it straight away. The place that did it didn’t tell me o had a hole in my iris.

They just say d the glare was because I wasn’t used to light

I pad to see a private neuro opthalmologist who said I had this hole in my Iris and it needs to be fixed.

I’m still trying to get it fixed by the place that did it but getting nowhere.

It’s like I’ve got a bet curtain going across my vision on bright days & we’re now starting to get bright days which I find drstesding & stressful

[Baggy8 in reply to 130396]

You seem to have made a link between your eye surgery which didn't go as planned, and your subsequent vision difficulties. This could possibly be significant. Occasionally people can experience derealisation, almost like your brain is not accepting the situation, its way of looking after you. It's not uncommon after bungled surgery or many kinds of trauma. It's worth considering if it is becoming worse, or you are noticing a detachment from people too. If so, your GP should be able to refer you to a talking therapist 😉. As Gambit mentioned, there are strategies that are incredibly effective as you process the trauma.

[WIZARD6787]

Do you find this feeling distressful other than it is different.

[130396 in reply to WIZARD6787]

Yes

[WIZARD6787 in reply to 130396]

I am sorry you are experiencing this distress.

[mcg-woo]

Hello,

I understand where you’re coming from. I had the same kind of feeling before I had adequate b12 treatment and very severe symptoms before any treatment. I haven’t been able to explain it as well as you. I could only describe it as feeling weird. I no longer experience this after having long term weekly b 12 injections.

I have PA. Low b12 and even inadequate treatment had devastating effects on my mental health and I had no history of mental health before my deficiency. I struggled with depression, anxiety and phobias but am no longer symptomatic

I hope that you feel better soon.

[130396 in reply to mcg-woo]

What did you have to get your B12 level up to?

Mine is 435 top of range 640x

What about your folate?

Mine is right at bottom of range

Thanks for replying too.

I’m glad you understand the feeling in my head too. It’s just horrible x

[bookish in reply to 130396]

Hi, your B12 is not high if you are having injections or oral supplements. Do you have PA or other form of B12 deficiency that you are treating or having treatment for? If you are having treatment I would have expected your doctor to prescribe for your low folate too, once you had started having the injections. I'm sorry you are feeling so horrible. Did you have a nitrous oxide anaesthetic by any chance, for your surgery?

[130396 in reply to bookish]

I haven’t had any surgery

I’m not on any supplements apart from Vit d and magnesium.

I’ve just got this awful feeling going on

Don’t know wfstcto do to stop it !!

Don’t want to involve Dr as they just like dishing out antidepressants

[bookish in reply to 130396]

I can understand that you are reluctant to see your doctor but sometimes it can be helpful. You mentioned eye surgery, perhaps I misunderstood. As you posted here I thought perhaps you have PA or suspected it from your symptoms/family history etc. Do you have a good folate-rich diet and is your blood-sugar control good? Are you on any meds which could be giving you side effects or reducing your nutrient levels?

[130396 in reply to bookish]

I haven’t been diagnosed with PA but my B12 is only 435

Folate is 4 bottom of range is 3.5. I had cataract surgery. I won’t go to a dr as all they want to give you is antidepressants

[bookish in reply to 130396]

Yes, thank you. Are you already on antidepressants or any other medication, or have you had any in the past? It may be relevant. Your B12 is not low, so they are unlikely to offer you anything unless you are clearly having related symptoms. Depression or anxiety could be a symptom, but also could be related to a number of other causes. Have you tried a multivitamin with a small amount of folate in it, to see if it helps? You could also try eating more folate-rich foods if you don't do so usually. Do you have a family history of autoimmunity or have you been diagnosed with one (or anything else).

[130396 in reply to bookish]

I’ve been hypothyroid for almost 40 years. I take levothyroxine & Liothyronine for that. I take Hydroxycarbamide for blood cancer. When my thyroid was being under medicated I was put on antidepressants instead of treating my thyroid properly abd the side effects from them were horrendous. I’ll never touch them again .

[bookish in reply to 130396]

I don't blame you and I'm sorry that your treatment was so poor. Unfortunately with having a significant medication for cancer you would not want to take folic or folate supplements without the advice of your prescribing doctor - if your serum folate becomes below range they should treat, but only to bring you to range, not enough to make excess folate available. So food sources would be your best option at this point. Your serum folate should be being monitored on this drug anyway and disorientation is one of a number of side effects which may not be helping. You could perhaps talk to a local pharmacist if you want to avoid your GP and don't have regular contact with your specialist. With long term thyroid issues you may have parietal cell damage (leading to reduced stomach acid and intrinsic factor and making B12 hard to absorb). You could perhaps consider self-testing for active B12 (holotc), antibodies (anti-gastric parietal cell and intrinsic factor), homocysteine and methylmalonic acid. There is no definitive test to rule out a deficiency but it may give you some helpful information.

[130396 in reply to bookish]

the consultant from guys hospital reolied to my email today saying that folinic acid or folic acid & B12,supplements wouldn’t do any harm.

I can’t self inject as I’m not allowed injections due to being on warfarin.

I must absorb B12 as it’s 435?now.

[bookish in reply to 130396]

I'm glad that they are ok with you taking folic/folate/folinic (some do better with one than another) and B12. Getting B12 into the blood is only a part of the story - it still needs to get into the cells and have the cofactors to do its job. You hadn't mentioned the warfarin, so I wonder if you are on anything else which might be contributing to a B12 or folate issue - PPI, metformin, methotrexate etc and any medication (statins?) could cause side effects that could contribute to how you are feeling. You'll need to think about everything that you are taking and do some reading if you don't want to ask. I don't know how long you ended up on the antidepressant meds but they too could have depleted essential vitamins and minerals. If you decide to supplement I'd still suggest that you start B12 first (slowly, at a low dose, especially if you start with methylcobalamin as it suits some well but others badly) and then add the folate. There are plenty of options - oral, sublingual, liquids and patches for B12 and folate or B complexes. You may get benefit from these forms of B12, but not all can and without further testing you won't know. It would be worth checking how high your vit D is too, if you have been taking a larger amount for some time.

[130396 in reply to bookish]

My Vit D is 198. It was 16 years ago that I was given antidepressants.

I take magnesium . 20mg nortriptyline. 500mg Hydroxycarbamide.100mcgs levothyroxine 30mcgs liothyronine.

There’s nothing else abd I’ve been on these medications since 2014.

I didn’t know you can get patches for B12 and folic acid.

I tried Ed a few years ago to take methylfolate but it gave me awful jitteresc

[bookish in reply to 130396]

Hi, I just noticed that you'd made a few posts about your folate a few years ago, so I wondered why it was still low. Methyl groups can make some people very jittery, hyper and anxious, so if you don't do well with these it might be better to try folic acid or folinic acid and either cyanocobalamin or hydroxocobalamin. I do use a patch as part of my supplementation but it is methyl so not good for you. Others may be available of course. I'm sure someone can suggest a good supplement if you can't find one. That D is quite high, so might be wise to ease back on supplementation, at least as soon as we get some sunshine, if not before.

[130396 in reply to bookish]

I have cut back on the vit D since i got that result.

I’ve had this sort of level of folate for a very long time apart from a couple of years ago I started using a folic acid supplement and it went way over range so I stopped it and haven’t taken it since.

I’ve been advised to take folinic acid as it’s what is recommended for people taking Hydroxycarbamide

[bookish in reply to 130396]

That sounds like a good plan. Hope it helps. Best wishes

[130396 in reply to bookish]

Thank you very much

[mcg-woo in reply to 130396]

My b12 levels are above 2000–that’s the highest the lab test can read. I have to have weekly injections to keep those levels high enough to reach the cellular level and prevent symptoms. It’s just the way it is for me. I could never get better on injections every other week. Some people need more frequent injections than others to get and stay well.

My folate levels are within normal range. I hope you feel better soon. During early treatment, I did have a b12 level of 480 and I felt awful. Low b 12 takes time to recover but also frequent enough injections to get levels where they need to be to get better.