Sever dizziness and severe fatigue du... - Pernicious Anaemi...

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Sever dizziness and severe fatigue during walking after four months injection

Hamayeshguy profile image

I inject cyanocobalamin every 4 days for three month but I have developed dizziness and sever fatigue. I can't stand on my feet I have cold hands and nausea blurred vision. I can't walk for even half a mile. This dizziness disrupted my daily life because I can't even go for shopping. Especially my feet muscles are completely exhausted and I feel I'm going to faint. I sweat and my heart starts to race but without throbbing. Can it be blood pressure drop or blood sugar drop. But this fatigue doesn't go away at all. My muscles can't hold my weight. I'm better than before but this severe fatigue and sever dizziness is so frightening because I feel I'm getting collapse every minute. I don't know what to do. I have referral from ER to heart specialist but I think it's related to my blood volume . Please let me know if you have the same experience

36 Replies

Sorry to hear you feel so ill.Have you had a diagnosis of b12 deficiency or Pernicious anemia?

In the UK a different loadng regime is given.

Were full bloods done?

If ER referred you I'm hoping they were.

I had virtigo at the start and couldn't walk

It took several months to get walking.

This can happen.

As long as everything else's is being ruled out and depending on how low you got .

Keep going with yiur b12 injections.

You shoukd start to improve .

It does get worse for some before better.

Try snd stay as calm as you can.

Hamayeshguy profile image
Hamayeshguy in reply to Nackapan

No, 2013 my GP told me I have severe B12 deficiency and ts needed to inject B12 once a month. After three or four times injection my GP moved somewhere else and other doctors refused to inject my monthly shot. In that time I didn't have any symptoms but through btime symptoms developed first fibromyalgia and difficulty in walking up stairs and then eye blurring and in last September I experienced shortness of breath , virtigo , heart palpitation, sever dizziness and muscle, weakness, tinnitus, hand carpal tunneling and numbness in my feet, and as well out if the blue last September ublical hernia developed on its own. I visited many doctors but nobody found out what is the cause and then I started to find out by trial and error of taking medication. Soon after I found B12 is helpful and started to take B12 and convinced couple if GP's to get B12 shot. And then I saw improvement in my situation. Since I was done B12 shots it wasn't possible to do any other tests like MVC, MMA and Hsy. And my GP stopped to inject my b12. Then for 6 month I took sublingual B12 2500 mcg in the morning band 2500 mcg timed release at night. It was helpful but I was sleeping a lot and healing was so slow. Then I started to self administration if B12 and my symptoms improved a lot but I think because sedentary situation for long time my blood circulation wasn't good and It showed new symptoms like dizziness. Then I decided nti have more movement, but my symptoms nniw are changed and I have a little bit heart beat racing and low body temperature with lots of sweating and feeling my severe weakness in my muscles and think my muscles don't have strength to keep me standing on my feet. At the end if the next month I have appointment with heart specialist but I think it's not heart because my ecg didn't show any anomalies. I don't know whats wrong but it has disrupted my daily life and I can't even go for shopping daily groceries.I don't know which specialist can help.

Nackapan profile image
Nackapan in reply to Hamayeshguy

Okay. So you know its because your b12 injections were stopped.

You are doing all the right things .

Keep a log.

Go for any further investigations to treat symtoms.

Not sure why the blood tests you mention not possible?

Unfortunately there are not specialists as such on b12 deficiency.

Some neurologists take sn interset.

The cardiologist you are seeing hopefully will mske connections.

Haematologist sometimes are good.

It is a minefield.

Do get bloods done for folate ,iron, vit D

Often csn get deplete too

A broad spectrum vitamin snd mineral multivit shoukd support your recovery.

Hope your regular b12 injections will continue to help you .

Keep going with them.

Eat well .

Many Members on here have good information to offer.

Take care

Hamayeshguy profile image
Hamayeshguy in reply to Nackapan

I checked with neurologist to rule out other issues and no problem was found by nerve electrical conduction device. And last September checked folate and iron and thyroid it was in normal range. I have tested for ferritin and blood sugar. But vitamin d is not covered by my insurance. I'm in suspect of long term stressful life that I had triggered all of this problems.

Nackapan profile image
Nackapan in reply to Hamayeshguy

That's good

Can I suggest you join the Facebook group called Vitamin B12 Wake Up.You will find lots of useful advice on there especially if you are self administering b12 shots. I believe that maybe other things need to be taken to aid the b12 absorption. Also I believe that high doses of b12 can reduce potassium levels which could explain your current symptoms and I would absolutely mention all of this when you see your heart specialist as reduced potassium can make you feel weak, cause palpitations etc.

The B12 wake up group will explain how to get enough potassium in your diet(do NOT take potassium supplements though unless under the advice of your heart specialist as equally too much potassium can effect the way your heart works)

Hope you feel better soon.

Gambit62 profile image
Gambit62Administrator in reply to Medmelt

Please note B12 doesn't need other vitamins and supplements to be absorbed but the fact that it is used in a lot of processes in cells and those processes use other vitamins and minerals does mean that having more B12 won't help those processes to run efficiently if there are other deficiencies going on.If you have a B12 absorption problem that can affect the absorption of other vitamins and minerals - most commonly iron and folate - but that doesn't apply to everyone and it is possible to oversupplement.

B12 doesn't need more potassium but the process that replaces red blood cells does. Potassium levels may fall if a patient starting on B12 has macrocytic anaemia but the need for extra potassium is in the month or so when the anaemia is being corrected. As you say - potassium supplements should only be taken under medical supervision. Dietary sources include banana and oranges ...

health.clevelandclinic.org/...

Please, speak to your doctor if you have kidney problems though

kidney.org/atoz/content/pot...

Hamayeshguy profile image
Hamayeshguy in reply to Gambit62

I take banana orange juice alot and I asked my GP to check my blood sugar (3 months) and also ferritin. Tomorrow results are going to be available.

Are you eating lots of potassium in food?

Taking magnesium?

On a B complex for folate /folic acid

Also try a low lectin diet (plenty meat, vegetables, reduced grains, seeds and sugar)

If you've tried these things then maybe you need a different form of B12

Hamayeshguy profile image
Hamayeshguy in reply to Leils

I checked magnesium in hospital it is in normal range and I eat lots of veggies and protein no sugar and salt. All together I have injected 18 times each 1000 mcg in the last three months. On an off I take folate, b complex and multi vitamin and eat potassium foods alot like banana and watermelon and sweet potatoThank you

B12 can trigger histamine liberating reactions which causes dizziness and frequency of urination and a host of other things

How it can be controlled?

You would have to eliminate all histamine liberating food and medication. Anything that contains alcohol, glycerol, iodine and many other things

I don't drink alcohol but the list if foods are in contradiction with some important food sources for potassium and other nutrients like banana. Also frozen foods and can foods, tomatoes, seafoods, walnuts, avocado, sprout brussells, no dairy, no fermented foods, no citrus fruits, just fresh meat and fruits.For glycerol, no precooked foods and no processed fruits and vegetables.

No rice, no gluten, no jelato, no baked products no cooking oils like olive oil.

But in histamin releasing foods I didn't find glycerol related foods.

You'd say B12 injection cause release of histamin or is just a triggering effect to facilitate bor boost histamin release from histamin liberating foods. B12 injection caused fibromyalgia and vertigo that I didn't have. But couple years ago fibromyalgia was going to affect me but by more moving I think body choose which action is priority for allocation of B12 . That's my understanding and since I was in sedentary position and sleeping alot my body changed its priority and my body started developing fibromyalgia band vertigo since all people with low B12 vitamin have that potential. With that said before injection we need completely eliminate histamin releasing foods from our diet first.

Can you provide me scientific sources for relation between B12 injection and histamin releasing effect.

And any allergic reaction can cause release of histamin it means even not listed foods fir histamin liberation can trigger histamin release. So anti histamin tab can help. Is that true?

I'm so allergic and even my lips color changed two years ago to patchy dark spots but recently those dark spots got diminished.

Martin_12 profile image
Martin_12 in reply to Liyaelize

That's very interesting. Please could you let us have references for these effects. Thank you.

Liyaelize profile image
Liyaelize in reply to Martin_12

There's a lot of information on the Ray Peat forum and such a vast topic just way to much to share here being a thyroid platform.

Martin_12 profile image
Martin_12 in reply to Liyaelize

Hamayeshguy and I are not asking for a detailed explanation of these effects. It would be very helpful if you could provide one or two peer-reviewed scientific articles that describe how "B12 can trigger histamine liberating reactions which causes dizziness and frequency of urination and a host of other things"

Liyaelize profile image
Liyaelize in reply to Martin_12

Please read up on Mast cell activation and B vitamins. There's a lot of information even on the Ray Peat forum. I be am not able to load all the information here. You need to study each ingredient in your supplements and medication to find the issue for you. I can't use glycerol corn, lactose, fermented food or products. There's a Swiss research group with information

How do I attach here?

mastzellaktivierung.info/do...

Have you considered dysautonomia (POTS).

Hamayeshguy profile image
Hamayeshguy in reply to Loxo

Is there any test for that?

Loxo profile image
Loxo in reply to Hamayeshguy

It is something the cardiologist could test. However, google "poor man's tilt table test" and you can do it at home. However ideally it should be done while off any medication that might influence things. But it might give you some idea. Be slow and careful as you stand up. You start supine and rest a while. Measure hr and bp. Then you measure after standing at 1min. 5min, 10min while not moving. Easier if someone helps you. Some cardiologist prefer it over the tilt table test.

I had a weird situation, where I used to take Methyl-cobalamin fine, and then after it was withdrawn for some time and I restarted the injections I got a strange reaction to it, extreme weakness, whole body chemistry feeling strange, rapid heartbeat...this continued for some months... then when I changed to hydroxocobalamin injections this reaction stopped and I got much better.

There's no scientific research or understanding about these kind of adverse reactions as far as I am aware, but what you are describing sounds a little similar to what I experienced, although yours is with cyano and mine was with methyl. I have also heard of others who find they are unable to take one type of B12 but are fine with another. Based on my experience, perhaps try hydroxocobalamin injections and see whether things improve? What you are going through right now sounds awful, hope you find a solution. All the best.

Cherylclaire profile image
CherylclaireForum Support

I am glad that you are going to see a heart specialist. While everything could easily be to do with B12 deficiency, best to check. I had assumed that all of my problems were to do with my B12 deficiency, including my thumpy heart. But a few years after injections started, it got worse. I had a thumping heart, not just occasionally at night waking me up ... it had become frequent -an every day occurrence and most nights too.

GP tested my heart, found nothing but sent me to the hospital to have a 24-hour heart monitor fitted. It showed 4,000 episodes of ventricular ectopics. These start for no known reason, are not dangerous or lead to any heart disease, can be controlled by drugs -but can also go away without any action taken. Since I did not want to take strong drugs to control my heart, I just waited -and eventually it went of it's own accord.

So worth getting checked in case of an additional problem. Heart arrhythmia is listed as a B12 deficiency symptom but my mother and father both had severe heart problems -so wanted anything else ruled out.

The fatigue can be controlled eventually, but may take a while and a lot of B12. I now very rarely need to nap during the day and am now fine with 9 hours at night.

I was also doubtful that this would ever be possible.

I wish you well.

I have extreme fatigue and my muscles can't tolerate my weight I feel very very heavy weight which causes high sweating and feeling getting fainted. But this developed recently after three months of injection but throughout this period I was mostly sleeping. I have also developed feet burning and vertigo. I'm just wondering why my symptoms are getting worsening in Liu of improvement

It could be that you’re using a synthetic chemical form of B12 which is Cyanocobalamin and not the Methylcobalamin which is Naturally found in the body.

helvella profile image
helvella in reply to KaReeMah

All B12 supplements are made from synthesised B12 - in the sense of being produced in factories using a fermentation process. Whether it ends up being sold as cyano-, hydroxo- or methyl-.

Hamayeshguy profile image
Hamayeshguy in reply to helvella

I think all of them are synthesized through chemical way and no fermentation process is involved.

helvella profile image
helvella in reply to Hamayeshguy

Wiki must be taken with due care, but I think it is reasonably accurate here:

Industrial

Industrial production of B12 is achieved through fermentation of selected microorganisms. Streptomyces griseus, a bacterium once thought to be a fungus, was the commercial source of vitamin B12 for many years. The species Pseudomonas denitrificans and Propionibacterium freudenreichii subsp. shermanii are more commonly used today. These are grown under special conditions to enhance yield. Rhone-Poulenc improved yield via genetic engineering P. denitrificans. Propionibacterium, the other commonly used bacteria, produce no exotoxins or endotoxins and are generally recognized as safe (have been granted GRAS status) by the Food and Drug Administration of the United States.

en.wikipedia.org/wiki/Vitam...

I had all symptoms you describe, it took me nearly 2 years to recover, all mine started after b12 injections, heavy legs and limbs, drunk feeling, pins n needles, increased heart rate 140 + beats per Min and breathless and so on, had every test under the sun, was referred to cardioligist, nothing found, I opted no more injections and like I said nearly 2 years to recover, dont think the form I took agreed with me, I could barely function. Fatigue like I've never experienced in my life.

Hamayeshguy profile image
Hamayeshguy in reply to sbadd

A friend of mine who is psychiatrist told me your problem is due to low blood circulation and sedentary life in the last nine months so you need to bring back blood circulation to normal by adding more physical movement. Cold burning of feet and vertigo are related and since I'm low in B12 cause fibromyalgia. He told me it takes time to get back to normal.I hope you are well now. Did you have physical movement in that time or you had lots of rest? And now how do you feel. Did you have cold burning feeling of feet and dizziness and fibromyalgia?

sbadd profile image
sbadd in reply to Hamayeshguy

Don't think that was the problem as I was a cleaner before all went wrong, so was getting plenty of physical activity

Loxo profile image
Loxo in reply to Hamayeshguy

I doubt that but I hope it might be the cause. Orthostatic intollerance is complicated and the related dysautonomias. They have proven only extreme deconditioning would do this. Paper just came out about it. Have you been to space? Getting shots with b6 could hurt your autonomic system but you did not have that with the b12. Have you seen the cardiologist yet?

Hamayeshguy profile image
Hamayeshguy in reply to Loxo

Now due to phobia of fainting especially right after wake-up I try to walk and exercise and in the last couple of days I was just trying to exercise and walking. It was so helpful to completely eliminating numbness in feet and hands especially at midnight which used wake me up with heart palpitations and sweating but I don't have them. In the morning I have dizziness and after half an hour walk my dizziness go away. Still have blurred vision and when looking at my phone for long time why vision get doubled but after an hour return back to normal. Still have feeling hot feet and also sever weakness in my body especially feet. But because of this phobia of stiffness in my feet muscle and fainting I barley sleep more than three hours and just trying to have more activity. I feel better in my muscles but in expense of insomnia and nervousness.I don't know when this problem go away but I think exercise is really important in symptoms improvement. I hope by steady injection every four days and exercise and as well good diet my symptoms go away in the next six months.

Loxo profile image
Loxo in reply to Hamayeshguy

That sounds promising, then.

I don't know. I have similar symptoms and they are sending me to neurology. I feel like I'm on a boat all the time.

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