Please help me!!! Dizzyness/Muscle loss in hands/Heart palpations/so much more.........

Ears, nose and throat
1

Okay, so I have seen some other posts that look similar to my situation but nobody ever comes on to say what it is or if they get better.  

Last Feb 2017 - I felt like I was getting ill..run down my son was sick, thought I was getting sick.  I never really got sick (no head cold/flu) but started to have attacks of vertigo..then bam have vertigo non stop days and days on end, have an "event" as I call it, where the pain is so unbearable in the ear and neck, and everything goes numb on left side from head.neck, back. arm, thought I was dying that night, said goodbye to my son/husband..took two days to recover from the event like even move"..couldn't walk a straight line if I tried.  See doctor he says you have a virus/ear infection nothing can be done, do exercises and come back in a month if not better, did somersault exercises and spinning changes to boat rocking/swaying like a feather.  This goes on for a month go back to doctor, they say its viral but take some antibiotics, come back in a month if not gone.  So, after antibiotics slowly I start to feel better. I made myself do things even though it was so hard..so fast track vertigo/rocking goes away slowly, start being able to go outside, go walking, bike riding, gardening.....still suffer with muscle twitching, all on left side in leg and arm, legs in pain at night so bad, have to sleep on right side of body with a pillow between legs. Chest pains and heart palpations.  Go back to see doctor...he says not related, should loose weight (gained 30 pounds from the bed ridden of almost 3 months).  Keep having leg pains and weird freezing with feet and fingers like electrical feeling and then they are stuck and in pain in the position.  Gets pretty bad at some point in the summer go back to see doctor he says might be neurological takes blood work and no call back.  Fast forward to Nov 2017, bouts of nausea, sneezing,burping.. husband and son get sick I don't....but start feeling whipped out cant get off of the couch, muscle pain is bad, start having numbness in the neck and face, go to stand up and almost pass out, this happens three times, super scared go back to doctor. Doctor says labyrinths from ear infection and pinched nerve.  Things get progressively worse, dizziness unbearable, go and get CT SCAN.  Results clear - no sinus infection, no ear issues no cancer.  They forgot to do top of the brain.  Then have another "event" whole left side goes numb, pain of intolerable amounts, call doctor office, he assures me not a stroke takes days to recover from this "event".  Go back to see a doctor he gives me cerq for dizziness - doesn't work, end up having head pain that is unbearable go and finally see new doctor who says need mri and maybe MS.  Gives me shot of toradole, finally relief, have immediate relief have three really good days, also cut out all dairy, wheat/gluten as per drs advice, things looking up...then bam dizzyness comes back, fullness in the ear, neck and back clicking, pain, grinding, pressure on chest like someone standing on it, knees are sore and legs like 100 pounds, nothing wants to work.  Does anyone have any ideas???? I am ready to give up...if I am dying I would like to know so I can atleast try to appreciate my last few days...sorry to sound dramatic but I don't know what to do.  Also MRI still not scheduled, ENT office has not even called to schedule, no blood work for lyme/ebv done yet, I made apt for naturalpath in Feb - hoping I would bring some info with me.  HELP!

 

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also forgot to add that before the second round of dizziness I ate a bubble gum ball and my whole face went numb on the left side.  I have been doing research and I see it says tmj or something..but can all this be from TMJ?  Also some times the muscle goes into right side but mostly left.  All symptoms are constantly revolving...its like a party for hypochondriacs inside my body.

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I can't offer any solutions, but one thing I would strongly advise is to stop doing the half-somersault exercise, and certainly don't attempt the Epley if you happen to stumble across it. These manoeuvres are strictly for BPPV (benign paroxysmal positional vertigo). This is the one where the crystals in your inner ear get in the wrong place and start sending wrong signals to your brain about the position of your head. I've had this three times and can confirm the symptoms are nothing remotely like yours - just intermittent sensation of spinning, nausea and falling when your tilt your head in certain positions, and no pain anywhere. The BPPV exercises won't do you any lasting harm, but they'll make you feel very sick immediately after doing them.

It may be that you'll eventually need to do some kind of compensation exercises, but don't get them off the internet. This kind of thing needs to be supervised, or at least initially taught, by a physiotherapist qualified in vestibular work.

You're not going to die, lots of people in here report long-term symptoms like yours. But I know how miserable you must be feeling. I'd advise really pushing for that ENT appointment.

A lot of your symptoms do sound like TMJ too. The best person to see for this is an oral or maxillofacial surgeon. Either that or a dentist specialised in TMJ - but make sure he's a real specialist, as most dentists don't know much about it.

I hope you soon find the help you need.

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Thanks Lily!  I will stop that somersault, I am looking at 6 months wait for the ENT. But I found a dentist that specializes in TMJ, I am going to call and try to make an apt asap.  Thanks for replying to me. 

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That might be a good idea. However, I hear that some dentists are more interested in selling expensive mouth guards and other devices, rather than really dealing with TMJ.

Why not go to the TMJ boards on this forum? That's where you'll find fellow sufferers who might be able to offer more practical advice. There's no limit to how many forums you can follow.

If you click on your name or your icon in one of your posts, it will take you to your own home page. On there you'll find a button for Groups A-Z. There's a TMJ section in there.