Difficulty swallowing, loss of appetite and clogged eustachian tubes.

[WIZARD6787]

It is known that a symptom of difficulty swallowing is associated with B12 deficiency. How I experienced it was not accepted by the medics I hired.

At times usually at night I would aspirate/choke on food and sometimes fluid my whole life. This is often called having go down the wrong tube. It was not consistent and can be extremely painful and bring me to my knees. The fear is constant and effort must be made to go past the fear. This takes energy.

When I started supplementation it became acute and constant due to my neurological system starting to heal. I could not eat any solids which caused all sorts of issues. With time it has worked out for the most part.

Loss of appetite was not accepted by the medics I hired. Their check box was see a nutritionist in 2 months. I was losing weight, my muscles were wasting and had lost 7 stones is 4 +- months. The check box for that was unintentional weight loss.

I was not ever hungry and not having a sense of smell and taste made it hard to eat.

I came up with the concept of "a hungry". The reason was I came across "a hungry" was because being able to eat was not related to any accepted cause and was likely related to my neurological system. It started to come on strong in that I had to eat right then or it was be distressing. Eating was not enjoyable very often it was a matter of alleviating distress. I would be hanging out with friends and telling them I needed to eat but was not hungry and then would be able to eat and then immediately sleep.

The best way I can describe the experience of not being able to eat is it would be like forcing yourself to eat after having a large meal and eating too much and then knowing you had to eat. It does not follow that I could not intake enough calories as it is not consistent. When I am hungry I eat as much as I can as I know it may be 24 hours before I am hungry again.

Right now I am working on waiting on a wanting to eat and not going past it. If I go past a hungry than I am not hungry anymore. This can go on for 24 hours until I have a headache. I have food ready to eat as much as possible. It is all difficult.

My eustation tubes become clogged or most likely stay clogged to some degree. Most suggestions are based on the idea of popping the ears with positive pressure which was effective in mitigating the clogging. including the popping of my ears, popping my ears using "Otovent", popping my ears with diving underwater.

Note: Medics look at the ear and determine the color to see if there is fluid behind the ear. Different humans have different abilities to differentiate the hue, value and chroma and saturation of colors. That is science not applied science. It is measurable and repeatable. My experience is medics know that color is diagnostic and do not often have the innate ability to "see" colors in the way necessary. They are trained to believe they have abilities they do not. Sometimes it seems they believe they have all abilities and only need knowledge.

What solves my eustachian tube issue and does not just mitigate it is to create negative pressure when swallowing. It is a practice thing. Chugging fluids helped to experience swallowing correctly.

My swallowing was affected my whole life by B12 deficiency, the fear of choking and lack of appetite contributed to the way I swallow.

I believe that I could not have figured this out and what works now would not have worked if I did not supplement correctly including enough B12 with enough frequency.

Notes:

---It does help sometimes to yank on my earlobes in a way that I can hear a crack.

---It helped to apply heat to my face.

---It helped to drink warm fluids.

--Physical exercise exasperated the fluid retained behind my ears.

--My jaw pain and teeth pain was caused by the build up of fluid. WWWdot what do you think?

--Showers helped.

--Being in the cold without doing exercise made things worse.

--Humid hot weather exacerbated the issue.

--I noticed that if I read while eating I tend not to swallow properly.

--I am hopeful this understanding will lead to an understanding of mucusy.

So this understanding that I now have is not from collecting facts or referencing "experts"

It is born out of imagination most importantly imagining my eustachian tubes closed until they are opened when I swallow. The knowledge is nessary, it is not enough by itself because it is complicated not just complex.

I am aware I may be incorrect in my understanding. Critical thinking demands that.

This writing is not a woe is me. It is part of my exploration and discovery which I celebrate and treasure, when I am able.

All the above is related to my neurological system!!!! Which cannot be separated from anything.

[Nic878]

I'm on the forum for my partner hes just recently been diagnosed with b12 deficiency although has had neurological symtoms for 20 years. He has problems with his ears and his balance. His ears feel full constantly although sometimes worse than others and he gets the clicking. He struggles to get his ears to pop

[pitney]

My right ear feels constantly full and sort of bubbles from time to time and I also get pain in my jaw on that side, nothing found by GP or dentist🤔

[Nackapan]

My daughter almost got food phobic because of the pain it caused.Almond milk was her saviour.

And made smoothies.

I made broths adding eventually plain rice and grains.

Then she changed the food she had and the way eaten has worked.

Never big meals .

Never late meals.

Eliminating foods that she couldn't digest well.

Took a long time to work out .

As for ears .

I had this badly for some time.

Exercises helped for the jaw and ear popping .

Hot flannels over the face.

For me walking round the garden in the cold then blowing my nose worked ro reduce the pressure .

Massage hard above my ears behind my ears .

I also burnt aromatherapy oils every night and had some on a hankie .

I had an ear pressure test done eventually.

By then symptoms better as 18m.

later .!

Also a tinnitus worker rang.

Part of the ENT referral .

I'd actually done the coping things she suggested and continue to do so.

Did have vestibular physiotherapy .

First lot I paid for to get walking and to check the epley manoeuvre done at home was done correctly.

One at surgery failed.

The last 6 sessions I was able to do more without triggering a migraine.

So for me it's been time and more time but going in the right direction.

Some symptoms may have been caused by a bad fall hitting my head on concrete .

Neurologists had differing opinions of this.

But if so a horrid mix !!!

But caused by b12 D to start falling over in the first place.

I've not really had any conclusive answers to anything. Just theories .

Apart from the first ever b12 serum blood test .

But proven 'clinical response to b12 injections eventually.

And Gp eventually realised wasn't clinically depressed or suffered from anxiety attacks or a hypochondriac or lazy or not motivated ect ect.

So demoralising not to 'get heard ' continuity with a Gp so important but rarely happens now. 🤔

I also used to get food stuck and choke badly. Forgetting to swallow at times.

Needed plenty of fluid with meals .

Big tongue.

Brain jot connecting with what mouth supposed to do.

Something else I forgot In the many many symptoms

[WIZARD6787 in reply to Nackapan]

Thank you for that!Epley manoeuvre. Never heard of that or BPPV.

So 3 + years ago I started experiencing what I thought was swimmers ear. Makes sense what was happening was when doing the side stroke first one side and then the other I was affecting my inner ear canal.

One solution that worked was putting hydrogen peroxide in my ear. To time this I was playing spider solitaire on my phone. In effect I was doing a somewhat effective epley manoeuvre.

I will try the manoeuvre without the hydrogen peroxide which I do not like putting in my ear as often as I do.

Again thank you for that!!!

[Oneash]

I get bad sinusitis, and now I am on injections it is noticeable it clears up when I'm boosted up with B12 and gets bad when I need another jab. I call them sinus slugs, when I get a horrid blockage of mucky mucus shift. If it happens in your sleep it can be quite frightening.

It's obviously an over active immune response in me. Sterimar seawater nasal spray helps, but can irritate with over use. Certain sticky liquid foods seem to go up tubes, for me, so are best avoided. Porridge being one.

Yawn widely, hold your nose shut at the end, when your mouth is open, then swallow 4 times. That can shift eustachian tubes.

I did have a deviated septum and inflated concha operated on 11 years ago, but I assume you have had a head and throat scan? The operation relieved some problems, but caused others.

Swallowing problems must be very hard to deal with, very stressful, which is bound to make things worse. Do you have salivary gland stones? Massage under your jaw bone while sticking your tongue out as far to the other side as possible. There are also salivary glands lower, the ones that create mucus when you are sick. They can get infected. Massage around your Adam's apple. Your ears actually drain down to this point too. So massage with a downward movement from the earlobe to the bottom of your Adam's apple. Then both sides of your ear, together, follow it down to your Adam's apple. Then the back of skull top of neck area, follow it through the previous motions.

Learn about where the sinus cavities are. Gentle tapping can help. Steam helps.

Try avoiding dairy to see if that makes a difference. Get lots of antioxidants, anti inflammatories in your diet. Moringa powder seems to help me.

Persistence with explaining to each medic what the symptoms are. Never expect a Dr. to actually read your notes!!

I hope some of this is useful. Do what you can to have some agency.

Big hugs.

[WIZARD6787 in reply to Oneash]

Yes I did have a stone in my salivary gland. I figured that all out and will be filing a fraud complaint against the ENT physician. He tried to operate and lied about the size of the stone. His nurse made an error and forwarded an email the ENT physician wrote telling her to tell me the stone was large.

[Oneash in reply to WIZARD6787]

My GP at the time said there were no such things as salivary gland stones, when my dentist had pointed them out!

[Oneash]

Yes to the teeth thing too! I ended up having a tooth pulled, when it was blocked tubes that were causing the pain. Lower no. 5, which I since learnt is a particular sticking point, especially if your teeth aren't even. At tooth 5 the root canal does a zig zag, or some such, as far as I understand. Where one of my wisdom teeth was pulled, I can push up in the void and release chunks of crap, and sometimes blood. So I guess the fine tubes were damaged at this point.

Again massage from front centre of teeth, up to the bottom of the ear, then down to Adam's apple.

I get psoriasis externally, I gather you can have it internally. Again it gets better once I get my B12 jab.

Before my PA diagnosis I was getting mouth ulcers.

Dr.s seem to know about the blood system, but little about lymph and saliva and all the other ways the body uses liquid to lubricate and transport.

My GP kept saying my problems were dental and the dentist kept saying go back to the doctor!

[WIZARD6787 in reply to Oneash]

I experienced psoriasis staring in 1964. I called it my scurvy. 🙂

I still have rare outbreaks and a cream brings relief and then it goes away.

B12 supplementation has all but resolved it. It shows up in different parts on my body and now like mouth sores only lasts a few hours.

My right nostril has become all but permanently stuffy. Thing is sometimes it goes away for a few hours. I will figure it out.