My partner has has b12 deficiency symptoms for years, only recently diagnosed. He gets a fullness in his ears, he cant pop them even with all methods ENT teach you. I was just wondering if anyone else had had these problems. Initially we thought his off balance feeling when walking was caused by this but we now believe it to be a symptom of b12. Just curious if there's a connection.
Eustachian tube dysfunction is it pos... - Pernicious Anaemi...
Eustachian tube dysfunction is it possible this is connected to b12 deficiency?
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Nic878
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Balance problems while walking are certainly a symptom of B12 deficiency. Don't know about other problem you are talking about. One way to find out may be to see if B12 injections help with the problem or not. I have had many symptoms and doctors couldn't find the reason for them (and they are not in the standard list of B12 symptoms), but they become better with B12 treatment, so that's how I know...
What symptoms are not listed out of interest?
In particular, I get very bad GERD. At times, this is the only symptom I have. Haven't seen it listed as being a symptom, but others may know better...
Yes it's a symptom.Horrid .
It gets bad to the extent that I cannot breathe and ended up in ER twice, with my Heart rate going to 130 and BP to 170/100 and me almost fainting and weakness to the extent that I couldn't even lift my hand or walk and thought I was going to die. With a PPI, it gets better but I still didn't have the energy to climb stairs etc. due to low oxygen I think. I still have to take a PPI to be able to breathe, but hope this will get better with continued B12 treatment. If it doesn't, may have to go for GERD surgery (lynx).
My partner suffers terribly with GERD aswell PPI helps but he still describes what he calls a "dry belly" but drs don't understand what he means. I think I do though and I liken it to what I call a metallic belly when iv taken antibiotics if that makes sense
These are all symptoms of B12 deficiency. My mouth feels dry all the time and I feel like wanting to eat something creamy, like milk, butter etc. and drink water all the time.
All these will become better with B12 supplementation. Best is to take injections. In my experience, the US system of a few injections daily and then weekly for a month and then monthly is good. Even skipping the initial daily injections and just doing weekly once for a few weeks was good enough for me. Then, gradually, the frequency can be reduced and injections taken whenever one starts to feel the symptoms. Typically, for cyanocobalamin, one will need an injection every month for maintenance, and even with other forms, one may not be able to go directly to 3-monthly injections, as suggested in some protocols, and may have to reduce the frequency gradually.
Thank you for sharing. I knew that the USA protocol must be appropriate/effective for some people. This is the first reply from someone that finds it effective.
I think the US protocol says 8 weekly injections for those without any neurological symptoms followed by monthly injections. I had somewhat bad neurological symptoms with my mind just not working and I was feeling sleepy all the time (severe mental fatigue, so to speak). Weekly injections gradually cleared it. Due to some wrong treatment, later on I again got into trouble and this time, 50mcg/day methylcobalamin injection cleared it in about a month or so. I have switched to cyanocobalamin injections recently due to ease of use, but I think both are probably equally effective.
am111,I have all these symptoms and have been taking PPI to no avail. I'm now on B12 supplements. Do you mean your symptoms got cleared with PPI?
PPI is only a temporary solution to reduce the stomach acid to reduce GERD symptoms. GERD is caused by a weak LES (lower eosophagus sphincter) which is a muscle. My understanding is that B12 deficiency causes muscle weakness in general and could cause LES weakness as well leading to GERD. As B12 improves, GERD will automatically resolve and PPI is not needed. Long-term PPI usage is not good, as there are side-effects of PPIs.
As far as dry mouth is concerned, PPI will not help. That is a separate symptom of B12 deficiency and goes away only with B12 supplementation. Good luck.
Thanks so much for your response. I will continue with B12 supplements.
I saw in another thread that you are using methylcobalamin tablets for supplementation. For me, methylcobalamin tablets don't work and I had continued symptoms on these. There are studies that show that cyanocobalamin tablets work better, although they can take more time to act. You can either try switching to cyanocobalamin tablets, or much better, just go with regular injections. For your symptoms, once-a-week injection (for e.g. cyanocobalamin 1000mcg) might work well. Good luck.
Actually, what I'm currently using is meconerv forte capsules which contains 1mg of methyl cobalamin. Before now, without the approval of the GP, I used cyanocobalamin injection EOD for about 4 months without remarkable improvement. I had nobody to monitor the treatment so I stopped. Now a GP prescribed pariet, meconerv forte capsules and ginsomin. He monitors the treatment. When I noticed the negative impact of pariet, I withdrew it. This has lasted for about 3 months now and I'm still in pains. Hope I will be ok soon.
Are you making improvement with 1mg methylcobalamin tablets? It is surprising that you did not make any improvement with EOD cyanocobalamin injection. What kind of problems do you still have? Muscle pain? And what kind of negative impact did pariet have on you? Or you just withdrew fearing the side-effects?
The cyanocobalamin injection EOD lasted for about 2 months and I followed up with the tablets (50mcg x2 daily). I have burning and tingling sensation in my hands and feet, muscle twitching and pains, back pains, empty stomach, fatigue, lethargy, racing heart, agitation, less concentration and depression most times.
50mcg tablets for those with B12 absorption problems are useless, as only 1.2% of an oral dose is absorbed (for regular people, it is 1.2% + about 2mcg of a dose above 2mcg). My experience with 1mg methylcobalamin orals is that it does not give very good results. I was on one for 5 months and the problems continued. As per some reports, cyanocobalamin is better, at least in the tablet form (can give you a reference, if you want). Also, given your problems, you may need a higher dose. I suggest around 2000mcg/day of cyanocobalamin oral, People have even tried 5000mcg/day with good results. Personally, I am on 50mcg/day of injection and much improved and improving. I take this sub-cutaneously with an insulin syringe (31Gx6mm). I find this much better than the equivalent oral (5000mcg, as only 1.2% is absorbed). The problem with orals is a variable absorption (I had diarrhoea once on orals and the symptoms returned, obviously from decreased absorption) and the fact that it goes into the blood stream over 8-12 hrs, which may not be ideal. You can also try this if the current B12 supplementation is not working fully for you.
I do believe that your problems are solvable, with the right treatment.
Thanks so much am111. Please if I may ask: did you have all these symptoms. I can't finish the list of symptoms I have because I can't explain some of them. The problem I had with cyanocobalamin tablets is that I used to have bloated stomach each time I took it. I will continue trying options.
yes, all of these and I still have a few, including blurred vision, but getting better very fast. I do believe you need at least 20mcg/day going into your system for the neurological symptoms to improve. I prefer to do it with SC injections, but you can try 2000-5000mcg orals if you wish. All studies that have shown orals to work well have used cyanocobalamin and not methylcobalamin and my personal experience says that the methyl version does not work for me. Regarding bloating, it could be temporary or due to some additive in the cyanocobalamin tablets. Also note that cyanocobalamin takes time to work, as it is a kind of delayed-release formula compared to methyl version, so it may take 1-2 weeks before they start showing results, especially when using a low dose(my 50mcg/day SC injection started showing improved neurological symptoms in about a week). May be try a different brand of cyanocobalamin to see if it works better for you.
Sorry, I didn't mention blured vision and sometimes I feel my left side paralyzed with electric shock. There are lots more symptoms.
I have problems on my right side. We have similar symptoms. I understand that you are 47 male, same as me. One of the things that changes when I am properly B12 supplemented is that I get Nocturnal Penile Tumescence(NPT)/morning wood. We are apparently supposed to get it 3-4 times every night, but when I am on high B12, that leads to symptom improvements over time, I get a strong NPT and can feel it almost every night/morning. If you are not getting it, then you know that your B12 is not working or is not optimal and time to try something else. We need a high active B12 for resolving neurological problems. I didn't get it on methylcobalamin tablets but get it on 50mcg/day SC injections. I think something like 30-50mcg/day SC injection is good. You can try it also and may be it will work better for you.
That's one difference. Another disturbing symptom is sleeplessness. Did you have insomnia, and if yes how did you come over it? It keeps me restless and uncoordinated.
No, I don't have sleeplessness. Feel sleepy a lot actually, particularly when my nerves are healing, as it drains my energy. I think your insomnia could be due to breathlessness/lack of oxygen. Do you feel chest pain, especially when you breathe in? If so, a PPI could help.
Hi am111,How's the going? One of the symptoms is high palpitations in the middle of the night. This has been waking up. Once I wake up, can't resume sleep again. Did you have this?
Hi Orimini. Yes. This happened after I ate or lay down. It could be due to low oxygen levels that raises the heart rate in particular (similar to asthma patients). When this happens, check your heart rate (can be done manually by feeling the pulse in the wrist) and bp, if you have a machine. In my case, the heart rate would shoot up, with occasionally high bp. I understand that this could be one of the symptoms of GERD. Try taking a PPI for a few days, as PPIs take a few days to start acting. If this goes away, then you can take PPIs to control this till your LES heals. Know however, that PPIs can be habit-forming and when one stops them after a month or more of usage, the acidity in the stomach increases for 1-2 weeks before normalizing.
Please can antacid suspension also do the same function? I have been using PPIs for a long time and the side effects are very scary. Did you use antacids?
I do use antacids for some immediate relief. They work to some extent, but not fully. You can also try H2 inhibitors, such as Famotidine, which work better at night. However, I did not find even this as effective as PPIs. Did you have any side-effects from PPIs, or are you just afraid looking at the literature?
Yes, I have side effects with PPIs: pains all over the body, stomach ache and a host of others.
have not heard these as side-effects of PPIs. Could be something else. Generally, B12 deficiency can cause these symptoms. Perhaps you changed your B12 dose at the same time as the PPIs?
My current treatment is the first time I have ever used PPIs and cobalamin together. I have used PPI to treat stomach ulcer (for more than a decade now). Before now, I used to get temporary relief from the treatment but lately the relief declined; instead I feel horrible after taking it. Last year, I used cyanocobalamin on my own to treat B12 deficiency for five months. It also gave me troubles without improvement. I had no idea of initial treatment decline and therefore withdrew because of pains and odd feelings. Most times I feel dying. I currently treat B12 deficiency with cobalamin and ligaba to ease the nerve pains. Then antacids to ease my back pains. U may help me further. The GPs are not helping matters here. I have been in pains and facing insomnia for nearly 3 years now. Other members of the house please help me .
Do you really need ligaba? It is just a pain-killer with side-effects and if you can tolerate the pain, stop it. Some of the side-effects you mention could be due to ligaba. PPIs have seldom any serious side-effects, not the ones you are mentioning.
I do believe that you are not treated properly for B12 deficiency, as methylcobalamin tablets don't work for all. One thing that worked better for me was once-a-week methylcobalamin injection (500mcg). You can also try cyanocobalamin injection once-a-week 1000mcg. Methylcobalamin 500mcg injection once-a-week is the standard treatment offered in India, while cyanocobalamin 1000mcg once-a-week is recommended in the USA. It will take time, but you should hopefully start feeling better in a couple of weeks. The other option is everyday injection, which is what I am doing. My understanding is that everyday around 50mcg injection (methyl and cyano are equivalent here, as the absorption of cyano in lower doses is almost full) is a good treatment protocol also and it is working for me. Your current treatment protocol did not work for me very well and probably won't work for you either.
Really feel bad for you. I was in a very bad situation a couple of months back (probably as bad as you), but the daily injections have made a difference. Best of luck.
BTW, pain is not bad. It is part of the process of nerve-healing. The worst part is muscle weakness and loss of sensation and /or strength in the muscles.
Thanks so much am111. I appreciate your response. Like I mentioned in my previous post, a GP prescribed ligaba for me. I will see him tomorrow to discuss the withdrawal of ligaba. It relaxes my nerves to enable me sleep but has several withdrawal effects. Again, I have used PPI for a long time. I feel it has contributed to my nerve degeneration. I will attract his interest to increasing/changing the brand/method of administering cobalamin. As for the pains and insomnia, I will discuss with him. This platform has kept me going. Please do not hesitate to give me any helpful information you have.
PPI would have certainly contributed to nerve degeneration, as it reduces B12 absorption in the stomach. Other than that, I don't see how. PPI usage is not ideal and if you can manage without it, it is better. For me, I cannot even breathe, so it is essential currently. Other symptoms of GERD I can manage.
Also, take a good B-complex with at least around 1mg of folate, as all the B vitamins are needed by the nerves, especially for regeneration and folate is especially important.
Hi am111, I was able to meet with the doc and he prescribed 2 capsules of meconerv (2mg methyl cobalamin) for me. I still find it very hard to get sleep and electric shock sensation still persistent.
Thanks.
Oral methylcobalamin was the one prescribed for me too and it does not work well for me and I had continued symptoms even after 5 months of use. It helps in the beginning, but as the body gets used to it, its effect diminishes. I never really felt well on them. All the studies for effectiveness of oral B12 have been done on cyanocobalamin and not on methylcobalamin. Also, this particular paper clearly shows that oral cyanocobalamin is better and that for some people, methylcobalamin does not work at all:
ncbi.nlm.nih.gov/pmc/articl...
Perhaps you can talk to your doctor and see if he is willing to prescribe cyanocobalamin. May be show this paper to him/her.
Note, however, that when switching from methyl to cyano form, it can take some time for the cyano form to take effect - like a week or so. This is because, cyano has a much more diffuse and slow kind of effect that builds up over time and methyl is more instant kind.
If you are unable to source cyano tablets in your country (I can't find them in India!), you can buy from here:
iherb.com. They ship worldwide and hopefully in your country too.
I prefer the capsules or coated tablets, as we have found some issues with chewable tablets, which can get spoilt due to picking up moisture.
Best of luck.
Also note that nerve healing takes time even with the correct treatment. I find that it takes one week to see some difference, and studies have shown that it usually take 6-12 weeks to heal fully.
Thank you am111. The main problem my doc just like so many of them is that he doesn't even know the actual sickness he is treating. Though he had my previously done blood work results with him, he was bent on treating anxiety. All my explanation about B12 couldn't catch his attention. Another snag is that around here one can hardly find 1mg cyanocobalamin tablets/capsules. It comes as composite with other ingredients (eg Neurovit for 1mg cyanocobalamin). That's why I use meconerv forte to get 1mg methyl cobalamin. If I can get mg cyanocobalamin tablets, I will appreciate it despite the side effects I have had with it before. Here it comes in 50mcg. Thank you so much.
I have gone to many doctors, and most of them are ignorant about B12 and the problems it can create. My treatment was stopped twice after testing for serum B12 levels which came high after supplementation. I just started on my own because that was the only thing that was helping me after experimenting with different things.
I think a lot of medicines in Africa are supplied from India, so you have the same problem as me and the same medicines are being prescribed as in India. They prescribe methylcobalamin tablets in India and that is the only thing available. Try to see if you can get from iherb.com or some other US/UK/German pharmacy and get it shipped to you. It may be a little more expensive but nothing is more important than our health. The other option is to simply inject 20-50mcg/day using an insulin syringe, which is what I am doing, in case you are able to source injectable cyanocobalamin. I use a 30ml multi-dose vial that can be used for about 30-40 days.
Thank you am111. The main problem my doc just like so many of them is that he doesn't even know the actual sickness he is treating. Though he had my previously done blood work results with him, he was bent on treating anxiety. All my explanation about B12 couldn't catch his attention. Another snag is that around here one can hardly find 1mg cyanocobalamin tablets/capsules. It comes as composite with other ingredients (eg Neurovit for 1mg cyanocobalamin). That's why I use meconerv forte to get 1mg methyl cobalamin. If I can get mg cyanocobalamin tablets, I will appreciate it despite the side effects I have had with it before. Here it comes in 50mcg. Thank you so much.
Yes for me it is.My ears popped and some relief had .
Blocked stuffy feeling in nose still happens if k se stripes or spots .
So i magine something to do with 5h3 vestibular system.
I've had balance issues .
Pysio helps .
Also had 4ar pressure tests that were normal.
Visual disturbances
Tinnitus .
Pressure in head.
I was thinking I'm living with daily low key head pain / pressure .
It peaks at times or can go to a vestibular migraine of different degrees.
Eye sockets feel tight
Glasses feel like metal clamps but are not too tight.
So loose that if I bend they fall off !!
I'm greatly improved but has taken years.
I was told on several occasions your body has to work 3× as hard to stay upright ignoring contant signals you are going to fall .
Exhausting.
Only yesterday a particularly uneven path 'set my head off ' stagger walk.
Stopped used eyes to fix on something then continued .
Always worse if b12 low/ due.
Any illness I.e cold ect .
Keep going with regular b12 and incorporate pysio into daily life .
Get bloods done to make sure iron, folate,vit d ect okay .
Supplement if needed .
Keep blood sugars steady .
I have the same issue been going on for 8 months in just my right ear. My regular doctor looked at it several times and said no wax buildup and drum looked good. Problem has been persistent so I finally went to ENT as it was getting worse and affecting my hearing. ENT spent maybe 1 second then went right up my nose with a scope as I watched on screen. Entire sinus cavity impacted by polyp growths. He did a CT scan and said the growth on right side is pressing against my Eustachian tube preventing it from draining properly and thus causing that fullness from the inner ear. He offered that mostly this is caused by allergies but there is some thought that these polyps could "possibly" be related to my body's immune system continuously being amped up with the chronic inflammation of autoimmune gastritis/PA. He did say there's nothing conclusive. I just find it interesting that now after three years after my diagnosis this now shows up when I've not had problems my entire life.I have surgery on 29 September to remove all the growth and clear out my sinus cavity. What fun! 🥳
Rexz
Hi Nic878, I have some Eustachian tube dysfunction. For me, it gets markedly worse after eating cheese or other inflammatory foods. Sometimes it sounds like a rubber band twanging in my ear when I lean down and then stand-up. I also have fairly significant mast cell activation symptoms. I think in my case, the Eustachian tube issues is related to mast cell activation.
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