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Old 09-30-2013, 11:30 AM #11
jprinz99 jprinz99 is offline
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this is what my Speech therapist, ENT, neuro and gastro docs taught me to do to help with this (and yes, it is scary, freaks people out and just palin sucks).

Do not sleep on back - try preventing this by slipping a tennis ball in a pocket sewn on back of jammies or use pillows to prevent you from rolling over on your back while asleep. Side or face down sleeping helps anatomically prevent saliva choking while relaxed/sleeping.

prop up head and shoulders while sleeping (I use 2 latex pillows, others prop up the bed frame or mattress). *Make sure not to just elevate your head

Do not brush your teeth or use mouthwash just before bed, as that alone causes saliva to temporarily increase. I do my teeth right after supper and go to bed a few hours later to prevent this "wetter mouth" issue

do not eat or drink if fatigues/tired/talking/not paying attention to the fact you are drinking or eating (sounds like a small thing but actually is a big deal)

tip your chin towards your chest as you eat or drink to help make sure it goes down the correct pipe (and that the wind pipe is 'sealed off'). If you lean forward a bit it also helps greatly.

sit up wicked straight &/or use a toss pillow behind your back while eat/drinking - this makes a big difference, as it holds you up tall and a bit forward!

I also have learned that I cannot be sleepy, distracted or on auto-pilot when eating or drinking. By this I mean I cannot read & drink some coffee or watch a movie & mindlessly grab a drink - I have to consciously stop and then drink, then go back to video/book, etc.

If you choke/goes down wrong pipe: lean forward from your waist while straightening back/spine and calm down. Coughing helps; back blows can sometimes help & sometimes make it much worse. For food stuck part way down: sometimes eating another bite or drinking will help push it down (but could be a big problem if food/pill is 100% lodged, so be careful -you will learn what works & when)

As long as you can make noise or cough: try to explain to friends/coworkers that while scary they should let you alone. "Helping" you can make it much worse or distract you from being able to relax and cough it up.

As odd as it sounds, I have grown used to choking. Learning to stay calm, knowing it should get better has helped most of all. My body doesn't spasm as badly which helps me dislodge or cough it all out.

Have your friend/spouse etc know the proper heimlich technique. You need to learn the "I'm choking" sign {grasp throat area with both hands}. If you cannot speak and are in danger - call 911. Even if you cannot talk to dispatcher - they will show up (do not hang up phone just because you cannot talk)

Good luck and know you are not alone *sorry so long but hope one or more tips may help, especially until you can get to medical help
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Old 10-01-2013, 02:59 PM #12
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Oh goodness...you're experiencing a lot of what many of us have gone through. It's frightening when you choke-it happens with no warning!

I've had a swallow study, but of course I wasn't experiencing the problem when I was tested. It seems to occur in batches for me...

I learned to tip my head down and try not to drink real cold drinks (most of the time).

Your sleep problems are another issue. Time to see a neuro with sleep disorder subspecialty-my neuro is certified in this. I use a CPAP now...helps tremendously with all those problems.

You really need to let the neuro know about all of this. Make sure you're keeping up your symptom journal!!

And let us know how you're doing
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Old 10-01-2013, 09:51 PM #13
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Thank you all so very much! I feel I've definitely learned some useful tips!

I had no clue about pattig the back making it worse!

The time I choked at work I was remaining as calm as possible but couldn't even force a breath, even after remaining calm. That was the scariest of all.

When I take a drink I hold it until my body is ready to swallow.. tilting the head forward has definitely helped making it easier and not as scary.

I still haven't gone to the er. Since its not happening right now, I feel they'll think im crazy.

I haven't been able to sleep on my back since 09. I get horrible spins and brain pressure so i sleep on my side and belly. I don't even understand how I choke on my saliva while in that position.

Also, my opthamologist (who is frickin amazing and wicked smart) thinks the episodes that I am having has something to do with autonomic response.

I am definitely experiencing symptoms of having both systems affected.. how do they test your autonomic response system?

So far with your helpful tips I've only choked a little on a drink once but was able to work it out super quick, wasn't even scary.

I am mildly concerned over the autonomic stuff as those are.dangerous/life threatening symptoms that I would like to stray from. Plus the whole feeling fine then all of a sudden I can't walk right, talk right, look straight, insides feeling faint episodes are getting real old. The feeling inside me as it happens is horrid. I feel like they put a massive stress on my system. They're brief only lasting for about 30 sec to a minute, but they happen 75-100 times a day. The numbness in my abdomen is finally starting to subside.. still there but not near as bad so ill take it!
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Old 10-01-2013, 11:31 PM #14
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I got a "suspected diagnosis" of autonomic neuropathy earlier this year because these symptoms all showed up or became more pronounced at the same time. The usual battery of cardiac and digestive tests didn't come up with anything conclusive, so apparently, like with MS, it is a diagnosis made through exclusion.

I pulled the plug on further testing because the procedures that had been done by then proved to be hard on the body and were making things worse. Further tests would have involved more invasive stuff, so I quit while I was ahead .

Here's some of the symptoms and some of the stuff that the tests showed:

Delayed/slow gastric emptying & intestinal movement (Everything seemed to be OK on endoscopy/colonoscopy tissue -wise; and the colon/bowel is unaffected).

A previous barium follow through showed some stomach emptying delay, slow movement through most of the intestine; but also rapid movement in some parts; as well as intestinal distension near the colon.
Now some of these symptoms have apparently become more pronounced.

(At times - not consistent)
Poor digestion; unaltered food particles in stool (TMI?)
Delayed bladder emptying and bladder distention (>1 litre)
Heart rate dipping to below 40 while sleeping
Heart rate not increasing sufficiently upon exertion
Heart skips a few beats
Slow heart rate (usually < 60 when awake)
Low blood pressure and not rising sufficiently upon exertion (average is <100/55)
Poor gag reflex; aspirating food, fluids and saliva
Problems swallowing solids (esophagus not working properly so food doesn't go all the way down)
Little saliva/tear production; negative for Sjogrens
Low adrenal function; though kidneys unaffected and better than average

Autonomic neuropathy is most common in diabetics but can also be caused by MS affecting the Vagus nerve which supplies most of the abdominal/thoracic organs. Brain stem lesions could be a cause as well but you'd need to check with a neuro on that (IDK).

I know that this all sounds nasty but as with MS symptoms, these too can be accommodated for. I'm still learning how to do that in some ways, but day by day, am getting the hang of it .

Hope that you get some answers and some solutions as well.

With love, Erika
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Old 10-04-2013, 05:09 PM #15
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i wonder what your VS's are (vital signs); BP (blood pressure), HR (heart rate) RR (respirations). especially your BP. i would strongly encourage you to see your pcp or neuro about these sx's. they are concerning to me.

you sound like you're very level headed and a good problem solver.
keep us posted.
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Old 10-05-2013, 11:19 AM #16
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This sounds so very severe. I've not had anything that bad in the swallowing department. Of all the suggestions offered, these are the ones I've used to avoid these situations. Eat slowly. Tilt head forward while eating. Most importantly, focus on your eating, which is a challenge in a social situation where you are expected to be conversing with others or at least listening. Since your boyfriend knows about the difficulty, you can talk less when eating with him.
Erika mentions slow emptying of food from gastric tract. I have not had trouble with that since I have been on magnesium for spasms. Magnesium does cause more mobility, sometimes too much, but too much is better than too little.
Waking up with the secretions choking you is the one I would not know how to handle, and it seems the neuro should be consulted as soon as possible. I would not hesitate to go to the ER even between bouts until insurance covers your doctor visits better. I do not think they would consider this superfluous. I know my ER here would not, would recognize it as a major problem. i don't know what they would do for it, as I have not had that serious a choking episode. Had one recently and it was from eating too fast, from being in a hurry.
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