Feel Sedated

[KittyKitten]

Hi there,

I always feel like I am sedated. I am currently on 1 per week cyano injections. I have been on varying frequencies - every 2 weeks and up to every other day. But I don't seem to be improving anymore. I still feel so tired like my body never produces enough energy. I feel like everything is a chore and I'm always feel like I am trying to push through. I feel like I took a bunch of sedatives, and it never lets up. I don't have the dying feeling anymore and a lot of symptoms improved, but not this. oes anyone feel like this? Is it a low B12 long term effect? Or from the B12 injection itself? I'm not sure if it's related or something else entirely. After over 2 years of injections I have stopped improving it seems, but I'm only partially better. Because of this I am struggling to work, even part time. I don't want to be tired anymore!!! I am also having trouble reacting to things, trouble reading, trouble talking/slurring too. Not sure where to go from here:

[deniseinmilden]

I'm afraid I can only suggest that you go back through the list of all the things you have checked before - methyl, folate, vit D, potassium, magnesium, iron, B1, other Bs, etc, one by one, and see if you can get a better response now you are further down the line.

I can't remember why you are on cyanocobalamin rather than hydroxocobalamin but doubt it would make a difference... Although it seems to make a big difference to me.

Obviously thyroid is the other obvious one and I know you have been really thorough with that too.

My fatigue levels improved last year, after 6 years of daily SI hydroxocobalamin plus additional everything, but that, I'm sure was due to needing more of the other B vitamins, especially B1.

Something else came to my attention recently about another reason for fatigue, other than those I've mentioned but I'm having a bad spell and can't remember, sorry. With me it's other infections wipe me out to nothing.

[KittyKitten in reply to deniseinmilden]

Thank you for your reply!

I have been reintroducing the vitamins over and over again, but it is making no difference. The only thing I notice is that some will give me side effects after several days, and the rest I just feel nothing. I have added B1 and have been taking for several weeks right now, still the same. I've had B1 injections before though so i haven't been lacking in it I feel. I am just going in circles with the vitamins.

I have cyano because my doctor does my injections and that is all there is at pharmacies where I live. I can pay extra to get methyl at a naturopath, and I have, but I feel the same. I had b-complex injections before too that had some hydroxo in there.

And yes, my thyroid.. I do have hashis but I have done everything under the sun in relation to thyroid but no improvement.

I am glad you are feeling a bit more energy, even though it did take so long!

And if you think of it or anything else related to fatigue, I would love to hear. I am all out of ideas

[TrixCie in reply to KittyKitten]

You know I also felt the same as you or worst 2 years ago. Overall fatigue, tinnitus, shaking feeling, weakness, panic attack, slur speech, feeling fainting all the time, hard time to read or focus, forgetfulness, legs are so weak that I can’t really walk, my arms are sooo weak, my head is so weak that it’s a task for me to even lift it, dizzy all day, gut issue, shortness of breath, numb in my left foot, blurry vision, I just felt like I am so sick that for a year straight I was just on my bed all day crying 😢 . I couldn’t even ride the car because I get nauseous feeling and really sick feeling like my whole body shakes after the ride. I also had hypothyroid. I knew I am also low on b12 as I was vegan for almost 8 years with no b12 supplements or any other supplements, I breastfed for 4 years, heavy monthly period, and so I got really sick. So, no doctors was able to help me and I just prayed and did the best I could do. So, what I did was fixed my diet first to fix my gut. I started with food that has No pesticides, No chemicals, NO to go food, No gluten, no food color, No sugar and no msg. I basically eat cooked food from home fruits, veggies, raw milk, healthy meat. I introduced a lot of different kinds of fermented food I make from home which are KIMCHI, RAW GOATS MILK KEFIR, SAUERKRAUT. I eat a lot of soup with lots of vegetables and good meat (chicken and beef with bones for collagen), food high in fiber (veggies, flaxseeds, chia seeds, organic gluten free oatmeal) good fats (avocadoes, cold pressed coconut oil, olive oil, eggs, fish, olives) distilled water, a LOT OF SEAWEEDS. I also made sure I take 1 RAW EGGYOLK in a small cup of organic grape juice because eggyolk with grape juice when you take it, that’s what we use when you are ANEMIC. I also eat atleast 2 boiled eggs a day. And I started supplementing Digestive Enzymes, Liposomal vitamin C, vitamin D, B vitamins, multiminerals, I also inject methyl b12 (1,200 mcg) every week that I buy online. Whenever I inject, I make sure I either juice green apple, celeries, beetroot, carrots and cucumbers or I eat a lot of salads, because it helps build good blood. And I also drink coconut water sometimes. So, all those for 2 years being strict with my diet, I am now travelling with my family, cooking for my family everyday (2 kids and husband), I walk a lot to get sunshine or walk at night everyday when it’s too hot during the day. All I could say though, when I got really sick, no doctors after doctors even understand and couldn’t help me, I prayed for guidance, God heard my prayers and little by little because I watch a lot from youtube about health so I learned a LOT in my journey. So, don’t lose hope. When I was so sick I was just so emotional because of me being soo sick and thought i was going to die 😞. But, things will get better 😊 as all those symptoms I had were all gone. We just need to help our body to sustain and give what it needs, our body is smart and it will heal by itself little by little. So, just hang in there cause I know you will get better too 😊.

[jade_s]

Are you on enough folic acid or folate? I still need to take 5mg daily else i descend into depression/anxiety & fatigue, despite blood levels being fine.

[KittyKitten in reply to jade_s]

Yeah I do take folic acid, and my blood levels were high last time I got them checked. I hardly have any depression or anxiety anymore. Unless something bad happens then I might get some anxiety temporarily in regards to whatever happened and then it's gone. I don't feel down hardly ever. But I do get frustrated and once in a while I will cry due to pure exhaustion :(. Almost like a little kid that needs a nap. I wish sleep would help the tiredness more though

[jade_s in reply to KittyKitten]

I understand, unfortunately. It took me about 4 years of 2x daily injections until i could work just part time. I too had lots of exhaustion. I often could do just 1 thing a week. If i were in your shoes i might try a higher frequency again - eg daily - and stick to it for a good half year. Everything you wrote below all still sounds like low b12.

[Nackapan]

I think you are doing better then you think tk work ag all.

'Im still making improvements bug they are slow.

I'm nearly 4 yrsrs in.

O still csnt read s book.

Travel far.

Walk far

Get on my bike ect .I can now watch TV again which is odd and actors look so old. !-

My brain is waking up.

I'm still light sensitive and do not have ' normal' house lighting.

So do not give up.

Keep up your b12

And other vitamins .

I've no other condition abd nothing else had been found.

So keep going

[KittyKitten in reply to Nackapan]

Thanks, to be honest, unless I get better I won't be able to work anymore :(. I was off work for over a year, now trying to go back, and it's not going well. I love my job and like to work so it is very frustrating.

I am glad to hear you are still improving! I feel like I am not improving anymore and haven't for quite sometime. I feel like I was taken from the brink of death and am now stuck in this weird half life where I can see all the amazing things in life again, but can't have them

My balance is better, my vision is no longer dim, I can run, I can move my body properly, I am no longer light headed all the time, I am not depressed or anxious, I can understand what people say again. But I am SO tired. Not even for a single minute do I have a normal amount of energy. I also struggle to read too, have a horrid memory, tinnitus, difficulty with speech/recalling words, loss of sensation, etc. All of that is annoying but I really just want my energy back I do feel grateful for my improvements but I feel like it doesn't mean much if I still can't enjoy my life

[deniseinmilden in reply to KittyKitten]

Thank you for your reply to my message. Reading the rest of your post, I can so relate to everything.

This week, because I've had a virus outbreak I've been back once to "crying tired" again. I have gone feral at home just so I can work enough to stay solvent. But I hate it. 😔 I'm such a driven, careful, fastidious little soul by nature and it's horrible having to give up being who I fundamentally am.

The worst thing is trying to adjust to the new me - and that changes as I get better and then new bits of me break.

Things I've had to give up, etc. Now, never knowing whether I should be ambitious for more improvements or just be content with what I've got?

Like you, I find being "part well" is almost worse than being too ill to care because you can now see things but are still not able to do anything about them.

It's hard to remember my "journey" but it took 6 years of daily 1.5mg jabs before I felt that I had pretty much sorted the B12 issues - but of course any setbacks over the last year have put me straight back in the B12d camp again.

So for you it might just be more B12.

If f hydroxocobalamin jabs are hard to come by then you might get a bit of an improvement with additional hydroxocobalamin sublinguals on top.

I don't know. They are available, although hard to find.

Have you tried folinic acid? Sometimes that works.

What I have now remembered since I've been asleep are other fatigue things...

Diabetes and blood sugar levels?

Adrenaline issues - things like Addison's?

Cortisol, and even melatonin, level issues?

Depending on what caused your B12d in the first place, issues relating to that? Gut issues, etc. A lot of those things make you tired and I'm not sure if it's in addition to the vitamin and mineral malabsorption - I suspect so.

Do you have any osteopenia? Breaking bones makes you very tired and I find trying to increase bone density does too (probably partly because it is using up minerals).

What do you think?

Do you think it might just be more B12 - either daily or even twice daily jabs, maybe?

I don't think it completely goes away every day but I feel theres definitely room for improvement in you and, if I rest one day I can feel pretty good the next so I think you should be able to get that far at least.

[Nackapan in reply to deniseinmilden]

Must've been writing at the same time.What good things to review

Re look at.

So can to relate to the adjustments .

You but not the 'old you'

Relearning a new way of life.

Take care

Hope you get in balance and are able to function s bit better.

I

[deniseinmilden in reply to Nackapan]

Thank you! You are always so kind and encouraging. There might be lots of you that has gone AWOL but the deep down caring character is unassailably there and irrepressible - even at your most challenged you have fought to overcome your difficulties and help people on here!

I seem to have managed to kick the shingles back into touch and am beating the vertigo now too so I'm feeling loads better today and am starting to do things again.

It isn't until you start to feel a bit better, that you realise quite how grim you were! Both acute and chronic.

I'm so impressed by your gradual improvements - it takes a lot of focus and courage, doesn't it! You are such an inspiration.

Of all the horrible symptoms the B12d throws up, I think that yours are by far the worst.

Good luck to you too! xx

[Nackapan in reply to KittyKitten]

I get that totally.It's the first yesr I really am well enough to even dream of say getting to a park and walking a mile.

I can't run.

But never have !

I miss cycling

Shopping

Driving g to a friend

Eating out in a cafe ( csnr be in the lights + noise)

Muss bright clothes

Anyone visiting has to wear plain.

Sensory overload sets high pitched tinnitus and head skull pain.

Getting on a train then bei v able to just wander.

I started from s dark place too.

Bedbound after final collapse.

Miss my work

Miss people.

However being able to watch TV is good.

Does set off tinnitus abd tightens my skull. Eye sockets burn.

But nothing g to the vile earlier symptoms .

I hear your frustration.

My mind is willing my body unable

Covid made me thd lowest .

A tooth extraction during shutdown set me back anour 6 weeks too.

Flu coughs anything extra is so hard isn't it.

My biggest improvements

Being able to write again.

( still nowhere near as well as in the past)

Handwriting worse as vision up and dien.

Also using my eyes sets of symptoms always .

Have learnt to accommodate akot.

Hate not finishing things.

Able to cook.

Only some days and make such a mess .

Used to wash uo tidy as I went along.

Can't do both.

So batch cook.

Can stand for longer

To cook.

To queue at z supermarket.

Still sit and pause wherever possible.

I hate the word pace.

I've had to embrace it.

Do deals with myself

I recently bought a very lightweight hoover.

Haven't been able to hoover.

Action noise set off terrible headaches made me off balance.

It's still sitting there at present.

Still can't use s landline

Can use a speaker phone on the mobile.

That really is hard though. I get terse when tinnitus head pains start but want to talk more as can't get to people.

Am having g vestibular physiotherapy

She is strict.

However since I 'failed ' many Romberg tests and scored highly in a bad way of questionnaire has really helped.

Mainly by listening.

Praising what I do do .

Amazed how much I do

Breaks it down.

Both agree my granddaughter is the best pysio.

She doesn't doubt my efforts 'to get on'

An invisible condition.

Many hust do not get.

I was talking with one of my daughters about ' pattern glare '

Light sensitivity

Trying to describe it.

Basically it's not pre meditated

Say if something g she us wearing

'Sets me off'

Usually stripes on a dark background or random spots or leopard print.

Dense flowers

My body reacts .

Head tightens

Tinnitus .

Sharp pains at the back of my head

Nausea

Irritated

Snappy

Shaky

Unsteady

All happening g very quickly

Sound familiar ?

Then takes recovery time.

Is improving.

I was told a few times by doctors it wax

'Anxiety'

Or as its happened fearful

So glad pysii witnessed it by chance.

On leaving g the room forgot to put Mt viser on.

Went sideways into a wall and took s ninute to work put what wax happening.

Overhead lights !

The pysio said she would document what she's seen .

Shame ax I left in good spirits.

Emotionally and physically very very difficult.

Like you say tantalising tastes of our own 'normality ' then snatched away agsin.

If you keep a diary.

Slow changes can be seen.

Getting covid made me realise what daily life ' used to be'

My daughter had to give up teaching.

Her vocation ,her absolute love .

I look at her .

Young . Determined to make the best of it .

Thanks for thus post .

It makes everyone think about their own struggles.

Hope thus is a blip for you .

Also you find a way through