[AppleTree]

I am extremely depressed over my symptoms, my doctors have never heard of this and I have no idea what to do or who to go to or even what to call this problem (s). Hopefully someone here might have a clue as to what is going on and point me in the right direction.

1) Many times a day (maybe up to 100) I get this sensation in my esophogeal area, kind of a squeezing sensation that ends in my throat and when it ends, I can feel kind of a pop at the base of my throat (maybe UE flap opening or closing?) and then it feels like a tiny spasm in my throat which results in a horrible, intense feeling of near gagging radiating into my ears, along with a "hiccup-type" sound, but this is definitely not a hiccup. I have to control myself to not let the "gag" happen lest I vomit. It happens over and over, getting worse as the day goes on. It gets worse after eating, even a few small bites and also worse when I get up and walk. My job requires me to be constantly moving it seems, just simple things like getting up to go the fax or the scanner or the files, and everytime I do that the sensations of gagging increase. I hate it so much when people come over to my desk to talk because when these spasm things happen I really have to put all controls out to stop this and quite frankly it looks weird. No doctor can even give me a name for this and in all my googling I have never seen anything like it. These are NOT esophogeal spasms.

2) Oral pharyngeal dysphagia, especially with liquids. I'm fine with sold foods for the most part, but to gulp down a glass of water is impossible. I have to drink sip by sip, holding the water in my mouth a few seconds while I prepare for swallowing.

I don't even know if these two problems are related.

Swallowing evaluation showed mild delay in swalllowing reflex kicking in with a probable neuro-muscular cause.

Neurological exam was normal except for hyper deep tendon reflexes. I would not let the doctor test my gag reflex however. He tells me he there is nothing wrong with me. I have noticed some difficulty in talking, speech feels "thick" but again doctor tells me nothing is wrong.

MRI was essentially normal.

ENT exam with throat scope was normal.

Upper GI series was normal except for small hiatal hernia and very mild lower esophageal irritation, doctor says neither of these would be causing my problems.

I've been prescribed many pills along the line of nexium (even though I have never had heartburn except the time one of these pills gave it to me) and they have not made an iota of difference, neither does valium or anti-spasmodics.

Blood work for a couple muscular disorders was normal.

Lyme test negative.

Pretty boring past medical history. I'm 60 yrs old otherwise in good health exept for a past history of severe vertigo attacks (haven't had a bad attack for several years (but do have balance/dizzy/motion intolerance problems) and a probable case of celiac. I have been eating GF for several years.

After all my testing the best I can get is a shoulder shrug, with "I don't know, let's wait a few months and see if it gets worse, then we'll know what direction to go in."

This has been going on for about a year and my life had come to a standstill. I can barely work with the feeling of very near vomiting happening over and over, I have not been to the dentist for 18 months and have a bad tooth that needs attention. I suffer from dental phobia AND emetophobia and I don't know how I could possibly sit through an easy cleaning exam, let alone major work.

My life has come to a standstill, other than work, grocery shopping and other must dos, my life has come to a standstill. I am extremely depressed and distraught over this and I don't have a clue what to do to find and treat the cause.

Any ideas, anyone?

[mrsD]

I have a couple of suggestions for you:

Do you use menthol mints, gum or peppermint tea regularly/daily?

If so stop all menthol containing products for at least a month, and see if anything changes. Some people are very intolerant of menthol (peppermint).

Also avoid acidic things for a while too... citrus drinks, fruit, vinegar etc. Sodas contain both citric acid and phosphoric acid, and these may be irritating a nerve in your throat.

Doing an elimination diet like this may reveal your problem.

If you have an irritated nerve, it may be due to a past viral infection. Try some lysine supplements for a couple of weeks and see if that helps. These are inexpensive and have no side effects.

You might want to get a B12 test run to see if you are low. Nerves cannot repair themselves if this nutrient is in short supply.

Have you tried a cold pack on your throat before you eat or drink liquids? Cold would numb a nerve and if it does help it
points to a nerve problem.

If you are taking statins for cholesterol, you might consider discussing with your doctor, getting off of them. They cause nerve damage in some people.

[Jomar]

[Pretty boring past medical history. I'm 60 yrs old otherwise in good health exept for a past history of severe vertigo attacks (haven't had a bad attack for several years (but do have balance/dizzy/motion intolerance problems) ]

Have you had any head bumps, car accidents/whiplash type injuries in the past?
Are your neck muscles seeming tight or sore at all?
Maybe an upper cervical chiropractor might be of help.
http://www.upcspine.com/self.htm
more info- www.upcspine.com
Or if you can find an expert multi skilled chiro for assessment that might be an option.
Possibly acupuncture?

[AppleTree]

Originally Posted by mrsD

I have a couple of suggestions for you:

Do you use menthol mints, gum or peppermint tea regularly/daily?

If so stop all menthol containing products for at least a month, and see if anything changes. Some people are very intolerant of menthol (peppermint).

Also avoid acidic things for a while too... citrus drinks, fruit, vinegar etc. Sodas contain both citric acid and phosphoric acid, and these may be irritating a nerve in your throat.

Doing an elimination diet like this may reveal your problem.

If you have an irritated nerve, it may be due to a past viral infection. Try some lysine supplements for a couple of weeks and see if that helps. These are inexpensive and have no side effects.

You might want to get a B12 test run to see if you are low. Nerves cannot repair themselves if this nutrient is in short supply.

Have you tried a cold pack on your throat before you eat or drink liquids? Cold would numb a nerve and if it does help it
points to a nerve problem.

If you are taking statins for cholesterol, you might consider discussing with your doctor, getting off of them. They cause nerve damage in some people.

Hello MrsD and thank you for your repsonse (with more thoughts than any doctor has given me ) Let me resond to them one by one

Gum, mints, tea - no, I don't take any of these, neither do I smoke, drink coffee or soda, never! (okay, maybe one soda a year). An occassional cough drop that probably has menthol, but that's only one every week or two or three.

Citric acids and elimination diets - I've been on the elimination diet (or some variation of) twice in my life - first time was about 5-6 years ago trying to figure out what was causing my vertigo and the second time was earlier this year under the direction of a chiropractor trying to figure out my above two problems. This lastest try was extremely restrictive and I stuck it out for about 8-10 weeks, no grains of any kind, no carbs, no nightshades, no sugars except what occurs naturally in fruits and veggies, no deserts. After 6 weeks my intestines got very messed up to say the least, I stuck it out another couple of weeks and then gradually started eating normal again. There was no change at all in my swallowing or esophogeal issues, unfortunately.

At this point even my normal diet is very restictive. No gluten, none to very little dairy, extremely low sodium (less than 1000 mgs a day), high on the fruits and veggies, never ever eat in a restaurant or food others have prepared, as little processed food as possible. At this point I suppose I could give up acidic things (orange juice and my daily apple or orange) but I wonder if that would really make a difference. There is so little I can eat, I hate to have to give up one of the few things I do have. If I knew that was my problem I would stop in a heartbeat, but I don't know if that will do the trick or not.

Irritated nerve - this is a possibility I have thought of but no doctor has ever mentioned it. Many times in my mind the idea that something has been going on with my vagus nerve has occurred to me, but exactly what I don't know (scared it is a tumor of some sort). I don't get a lot of colds or other viruses, probably less than one a year. It has occured to me that a virus may have caused this as last year I had a strange cold last summer and than another run of the mill cold in November and my issues seem to have started after these. Again, no doctor ever thought of this. I'll definitely look into lysine.

B12 is normal as is vitamin D. I asked my doctor to check my magnesium and depending on what chart you are looking at or what type of doctor you are talking with my came out in the very low/normal range. I have since added a daily mag supplement and it is now in the normal range according to all charts but no change in symptoms.

No statins for cholesterol. The only meds I take are are small dose of HCTZ (this is because of one doctor assuming my vertigo is from Meniere's, whether or not it really is anyone's best guess but the HCTZ seems to have helped and I'm not willing to risk a vertigo attack by going off it) and a potassium supplement. As needed I take meclizine, promethazine and valium for my vertigo/balance. I don't take much of any of these.

I wish I had a name for the esophageal problem. It's hard to google it when I don't even have a name for it it and not one medical person I have talked with has ever even heard of this. The only clue I have from all of my tests is the doctor telling me I have deep tendon hyperreflexia, I asked him to explain this to me and he said when he hits whatever with his little mallet the reflex continues to jerk after it should have stopped This feels like what happens in my throat. There is a minor spasm in my throat which may or may not be normal to start with but instead of it stopping it continues longer than it should and that is the reverberating feeling that I get in my throat (yes, odd as it sounds going up to my ears) that makes me feel like I will gag) This is so hard to explain!!!!

Is there a drug to help with hyperreflexia?

I feel so stuck and am afraid I will never be well again and will never be able to lead a normal life where I can go out and enjoy doing things like I used to. This is affecting every area of my life and I feel so sad and scared and alone.

[AppleTree]

Originally Posted by Jo*mar

[Pretty boring past medical history. I'm 60 yrs old otherwise in good health exept for a past history of severe vertigo attacks (haven't had a bad attack for several years (but do have balance/dizzy/motion intolerance problems) ]

Have you had any head bumps, car accidents/whiplash type injuries in the past?
Are your neck muscles seeming tight or sore at all?
Maybe an upper cervical chiropractor might be of help.

Or if you can find an expert multi skilled chiro for assessment that might be an option.
Possibly acupuncture?

Hi Jo*mar and thank you for your response. About a month before my bad vetigo problems started I feel flat on my face, real hard. That may or may not have caused my vertigo problems, who knows!!!!! One doctor said maybe, another said I have meniere's, another said migraine, another labyrinthitis, another said celiac. But anyway that was quite a few years ago before my latest problems so I don't think there is a connection between that fall my my swallowing problems.

But yes, my neck is messed up, years ago, before my above fall, I had an MRI and it showed lots of bulging and prolapsing dics. I have a constant achy neck and find it very difficult to look upwards towards the ceiling. My ROM in the neck is fair at best. So there are definite problems there.

I actually did see a chiropractor earlier this year after seeing my PCP, neuro, GI, ENT doctors with no help from them. Unfortunately the chiro wasn't much help either. He was a "functional neurologist" and my type of problem is right up his alley but he, like the others, has never heard of this. He put me on the elimination diet I mentioned above and had me to do some exercies for balance (which annoyed me because that wasn't the problem I was going for). With no change except for feeling more unbalanced I stopped going after about 8-10 sessions. I felt bad about that because he was such a nice nice person and truly wanted to help but I couldn't see spending any more money when it wasn't doing me any good.

Maybe I should try another chiro?? I know I do have neck problems but as to whether or not they are causing other problems I don't know. I've spent so much of my own money on co-pays and deductibles with no progress that I'm no longer at the point where I can say I'll pay what I can to find out what the problem is because now the money is no longer there and I'm getting tired of blind alleys.

[mrsD]

There is another thing you could try...

Magnesium comes now in a lotion you can rub on. This is very effective to reduce muscle tension, improve circulation and decrease pain.

When things are inflamed, often blood supply is reduced, so this lotion will open up the blood supply. (when oral supplements may fail).

This lotion is called Morton Epsom Lotion, and is available at low cost at Amazon and Walgreen's.

This is what the bottle looks like:
http://www.walgreens.com/store/c/mor...216500-product

put only a small amount (a dime's diameter) on a fingertip and massage it into both sides of your neck below the ear and along the jaw, once a day. See if this helps. It will be absorbed thru the skin, and go right to your target area.

I'd get your B12 results in numbers. The ranges are still out of date, allowing levels that are quite low to be labeled "normal". The new low today is 400pg/ml.
So you could be low and your doctor is clueless about it calling it "normal".

Another question... can you inflate your Eustachian tubes easily?
Pinch your nose and gently blow against the closure and the tubes should snap open...they make various sounds depending on how swollen shut they are. When they stay closed too much due to sinus or other congestion, fluid backs up in the middle ear and presses on the ear drum. This is often one cause of vertigo/dizziness.

Your description of noises when swallowing could be these not functioning well.

Also meclizine and phenergan belong to the same chemical family, and could create side effects when used together.
The family is called "phenothiazines"--also called neuroleptics--and these can cause a side effect called tardive dyskinesia, which are tic-like spasms of the mouth, tongue and throat.
https://en.wikipedia.org/wiki/Tardive_dyskinesia
Meclizine and phenergan are more mild in this potential, but it is still possible.
http://www.tardivedyskinesia.com/com...nia/causes.php

I was looking around YouTube a few weeks ago and found a video by a young woman who claimed that one tablet of Reglan
set off her acute neck dystonia. Reglan is used for nausea in some ERs which is where she was dosed. She could talk fairly normally, but when she read aloud from any written form, she went into the most painful spasms... it was horrific to watch!
People can get all sorts of odd things like this poor gal had.

You might have a form of dystonia as well, and seeking a doctor who understands this difficult problem may reveal a treatment for it. (some dystonias are treated with carefully administered botox).

Do 1000mg of lysine a day to start. You can go up to 2000, if necessary. Typically it comes in 500mg tablets or capsules.
They are large tablets, so a capsule might be easier for you to swallow--you could empty it out into some food (applesauce or the like). Lysine prevents viruses from replicating and keeps them dormant. A diet high in arginine without the balance of lysine provokes viruses into becoming active.

Remember coffee and black tea are very acidic. If you decide to do the elimination of acid...you need to consider them as well.

The testing you had was mostly to identify organic tissue changes, lesions, tumors, etc. If doctors don't "see" anything on those, they tend to give up the search for a cause. Many of us on the Neuropathy forum here, have had that same experience.

[Jomar]

If the chiro didn't do specific upper cervical adjusting , I'd look into that.
Definitely could have misaligned c1 c2 from a fall like that. It may only take one visit..
You may not even need to find a 'specialist" that takes all the x rays and such.. my chiro had studied it and used the leg length checking. It is a very simple and gentle adjustment for that area.

I had some gagging , stuck in throat feelings when I had severe neck spasms that pulled my top rib up and it got stuck in a raised position.
Finally a PT teacher happened to try a top rib mobilisation - and it dropped both ribs into place, it was wonderful..instant relief..
But my quite knowledgeable & helpful chiro hadn't thought to try that, but after I mentioned it he followed up as needed .
I could tell the few times they started to raise up again, from carrying heavy things and such.. so chiro would adjust them. After a month or so they stayed in place and no more troubles with that.

[EnglishDave]

I must just say here that we are all extremely lucky to have MrsD and Jo*mar passing on their thoughts and experiences in even the most obscure and medically baffling cases. Thank you both for all you do.

Apple Tree, I hope these answers give you new paths to follow which lead to a satisfactory conclusion.

Dave.

[AppleTree]

Hi - I went to the drugstore today hoping to buy some lysine, you are right, those are big pills!! Wow, I ended with nothing because I couldn't find capsules. I guess I'll have to look elsewhere. It's okay To open a caspsule and eat the contents only? I thought that wasn't a good idea, something about everything getting into your system at once?

I have been using magnesium oil for some months now, that must be similar to the magnesium lotion you mentioned. I rub it right into my throat and upper chest, but no change unfortunately.

I checked my B12 and it's 430 which should be okay, right? I know people with celiac tend to be low on the B vitamins because they aren't eating a lot of wheat and enriched bread and other grains. I do take B supplements and just looked at the bottle, no b12 in there, geesh!

[AppleTree]

Originally Posted by mrsD

The testing you had was mostly to identify organic tissue changes, lesions, tumors, etc. If doctors don't "see" anything on those, they tend to give up the search for a cause. Many of us on the Neuropathy forum here, have had that same experience.

Yeah, what's with doctor's and this? They don't see an obvious problem, can't even give me a name for my symptom, and they give up. They shrug their shoulders and I'm supposed to learn to live with this problem somehow. What kind of doctor does one go to when all else has failed? Are there doctors who take mystery symptoms and figure out what the problem is?