feeling like I’m on a boat… light headed dizzy after increasing b12 lozenges

[Cookiedough2022]

hi again guys

I’ve been taking b12 lozenges daily now 5000mcg x 5-6 a day to increase the dose while I wait for GPS to do their investigations… intrinsic factor came back at 1.63 but I know it’s not reliable. Waiting to see haematology and neurology privetly so don’t want to take too many more supplements to skew any more results. Still waiting on results of MMA but not holding on much hope …

But I feel so dizzy most of the time, light headed feeling like I’m on a boat. Can’t walk too fast or turn my head quickly as I worry I might fall over. This is definitely worse since I increased the disease of b12 . Started back in May just 1 tablet a day and increased in the last 3 weeks . GP also gave me loading dose of injections x6 over 2 weeks but wants to investigate further before any more injections.

i still have all my original symptoms of paresthesia in legs and tightness in calf.

Anyone experienced these symptoms… I’m hoping it’s things getting worse before better?

Thanks in advance xxx

[Nackapan]

My symptoms got worse before better.How long ago did you have your b12 injections?

Did you have s serum b12 test ?

Folate iron ferritin vitamin D too?

Not sure why b12 stopped ?

Bnf guidelines will help you.

Also read through recent links sleepy bunny posts

[Cookiedough2022 in reply to Nackapan]

Had my loading doses 3-4 weeks ago. My folate was low but in normal as was iron. I’ve taken folate and level come back up to 20+. Was 3.1. Vit d ok. I’m tempted to take some iron but wanted to wait to after the haematologist. B12 was originally 378 but recent tests showed 1800 before loading dose after supplement with lozenges. It’s just the lightheaded and feeling of feeling like I’ve had 3 glasses of wine everyday that I dont like - and I rarely drink!

[Nackapan in reply to Cookiedough2022]

Sounds like it coukd be a vestibular disturbance.Look up Cawthorne exercises

And vestibular.

It appears to be a common symptom reported on here .

I know that feeling very well.

I stopped all alcohol for over 3 yesrs .

You are wise to wait on the iron front.

In a multivit there is about 14mg

In spartone 5mg a sachet

I only started iron after I discussed a low ferritin level as possible cause for some symptoms .

The level was dismissed by gp.

Then prescribed a high iron tablet I coukdnt tolerate.

So now alternate with the above znd ferrous fumarate 210 prescribed .

Regular blood tests are needed .

I seem to need a low maintenence dose.

The main symptom that went when levels finally went up.

Breathlessness

Restless legs at night

Jittery feeling inside

Good your b12 was treated by symptoms

Many are not treated when 'in range'

[LouBee73]

I don't want to scare you, but I've had that dizziness and feeling like I'm on a boat (24/7 rocking/swaying/bobbing) for nearly 3 years. My partner/carer was injecting me with B12 last year (after I started that, I was no longer floor/bedridden and it seemed to help), but then he died suddenly and now I have nobody to inject me with it (too hard to work out the ratios etc or do it myself & I can't find the stuff I purchased anyway, as it's all boxed up somewhere as I had to move back in with my mum after he died because I could no longer afford the rent or look after myself), plus I can't think straight tbh with you. I was diagnosed with MDDS and it's a nightmare. I'm going through the 'change of life' and I have a strong feeling that this all has something to do with my hormones fluctuating severely - probably my thyroid (it runs in my family, my mum has thyroid issues), although it's not shown up in any blood tests - yet. My mum is 80 years old and I'm suffering the exact same symptoms she is - she just doesn't have the rocking vertigo/MDDS. Life has ground to a halt and it's pretty depressing (sorry). I just pray every day that eventually somebody will pick up on - or tests will show, what's going on exactly. I really want my life back.

Try to do the vestibular stuff as soon as you can. Because I belong to a MDDS group (online), and everybody there says that the sooner you do the vestibular stuff after you experience these sensations, the more effective it will be. I wish I had've known that, but I wasn't diagnosed with MDDS until 2 years of suffering from it. There's no 'cure' for MDDS (yet), unfortunately. Again, I really hope and pray that one day there is 🙏 All the very best to you, I hope you find answers/solutions and that you feel better soon 😊 ❤️

[Nackapan in reply to LouBee73]

I didn't know what Mdds was so looked it up.Mal de debarquement syndrome .

That described me totally .

Vertigo then bedridden.

That was nearly 4 yesrs ago .

I still have symptoms but am improving.

I've never been given that label.

It may be you just need more b12.

If I deplete the first symptom back is off balance.

I self inject

Subcutaneously .

Do try more b12 and see if it helps you.

I initially had the epley manoeuvre abd pydio to get walking again.

Then nausea and migraines stopped me continuing with it.

I'm currently doing vestibular pysio again.

Definitely helping .

So don't give uo.

Management cdn help you.

T c

[Nackapan in reply to LouBee73]

I looked up mdds Mal de debarquement syndrome.

I've had all of thise symptoms. Starting with vertigo.

Still have a vestibular disturbance nearly 4 yesrs on.

Can walk in a straight line.

Also cope with stairs and a slight slope now.

Have learnt not to turn my head too quickly .

Trying to cook was a nightmare as coukdnt stand on thr spot.

All improved.

I've never been given this label.

But you seem to have had to been on a sea voyage first .

I've improved alot on regular b12 injections.

My trigger was the menopause.

I self inject b12 subcutaneously.

Prescribed 2 weekly.

Need weekly.

Could you do this ?

You may be able to improve your symptoms.

Sorry for your changed circumstances and sudden loss of your husband.

Devastating.

[Cookiedough2022]

How long did you find your symptoms got worse before they got better? I keep telling myself it’s because I’m getting better .. just keep taking the b12 …but maybe I’m just getting worse..? It’s so hard to tell!

[EllaNore]

Hello cookiedough2022, yes I had those symptoms. And others as well. It was super bad for about 3 months and then suddenly, I am feeling like I'm on the upswing and things are mellowing out.

I was very dizzy. Anything moving made me sick, especially on TV, video games, scrolling text on TV. Etc. Turning head, weak legs, falling, losing balance, nauseous. It will subside. I really couldn't do anything for it but rest. I spent 80% in bed or laying down the past 3 months. It seems to be getting better. I can walk without crutches for a good party of the day now.

Give it time, it is scary, you might get abdominal pain too. That got pretty bad for me but, now that my body is used to actually having B12, my body is calming down.

Our bodies slowly get used to being in disease, when we give it what it needs, it can freak out. But it will calm down. Also, disease, as it leaves your body, can come out in the skin as blemishes, rashes, etc. I believe it is our bodies shedding the toxins and it comes out in our skin. Give it all time.

I am taking a good probiotic, antioxidants and prebiotic with enzymes to help my abdominal pain and digestion. It is helping too. That will put good critters in your guts to counter any bad critters that may have taken over.

That's what I experienced my first the months. Good luck. It does get better.

[SKYROCKET123 in reply to EllaNore]

I'm glad you are feeling better. Would you mind me asking which prebiotic you take please?

[EllaNore in reply to SKYROCKET123]

Absolutely. I normally buy my vitamin products and my probiotic Prebiotic and enzymes all in one from a place called Puretrim.com. formally known as Awareness in Canada. Synergy is what I take for digestion, along with their liquid vitamins and colon cleanser, but right now there is a shortage and I was unable to get Synergy for the last few months. Purtrim products saved my life 21 years ago. I highly recommend their Synergy probiotics, Experience colon cleanser and Complete liquid vitamins, as well as Harmony, their PH balancer. These products truly saved my life.

Because they are out of Synergy, I found another product that I'm trying called ZenWise digestive enzymes. So far so good. It is breaking down my food, my belly bloat is down and my abdominal pain is down. My BM's Are more regular and easier.

Good luck!!

Zenwise probiotics

[Cookiedough2022]

Thankyou so much! That fills me with some hope! We’re you injecting b12 or taking lozenges?

[EllaNore in reply to Cookiedough2022]

I inject b12 daily. I just tested myself to see if i could go without an injection yesterday. I did pretty good but at the end of the day I was quite tired and run down. When I woke up this morning I was discombobulated and shaky so I quickly injected my B12 and an hour later I feel much better. So I guess I cannot go one day without it right now. Good luck. SI had been a life saver.

[LauraJane2]

I had these symptoms originally, along with a whole host of others, but this was the worst bit for me.My GP originally put me on B12 tablets and I just continued to decline so I went back and then was put on injections. I don’t believe the tablets did anything at all for me. The loading doses weren’t enough to solve the problem, in fact I felt awful at that point. I think it took about a year of regular injections for me to start feeling normal again most of the time. You will hopefully get better quicker than me but I would be ready to put up a fight for injections.

[Cookiedough2022 in reply to LauraJane2]

Thank you , it’s exhausting just thinking about fighting with the GP! Xx

[LauraJane2 in reply to Cookiedough2022]

Mine is actually very supportive so it may not come to that hopefully.

[Cookiedough2022]

Did u have tests confirming the diagnosis of b12 deficiency?