Extreme Difficulty Swallowing

[Kennedyhope]

Hi everyone, I got diagnosed with pots and MCAS a few months ago following COVID. It’s been horrible. But the worst of my issues aside from the tachycardia/ passing out/crazy episodes is difficultly swallowing and nasal swelling. I have EOE but it’s bring treated with Dupixient and my swallowing issues have more to do with the actual swallow. Sometimes the swallow won’t “go”, sometimes my throat starts getting tight right as I’m about to swallow and sometimes even my chest gets tight. I’ve been trying to figure out why this is happening and how I can treat it as doctors just don’t get it. I’ve had theories about it possibly being because my nose and airway is so blocked, it’s impeding on the swallow. Had theories about reflux. But there’s definitely a neurological component, as while I have issues with throat tightening while chewing and the food starting to go back even while still chewing. I also get this tightness or fullness in my chest or near sternum while going to swallow, and often feel like I’m suffocating while swallowing. 
Any response or guidance would mean the world. This is the hardest time in my life. I miss food. I’ve lost 40 pounds in 4 months. I want my life back. 

[RecipeForDisaster]

I have similar issues and am going to see a neuro GI next month. I’ve had lots of testing, which only showed that half my swallows are weak or ineffective. Let me know if you get answers and I will do the same! I’ve had this for years and nothing has helped - I choke and aspirate almost daily.

[MikeO]

On 11/7/2024 at 3:01 PM, RecipeForDisaster said:

I choke and aspirate almost daily.

Just watch it when eating meat. Cut it up in very small pieces and chew it well (32 times haha). i have swallowing issues as well. i have choked of some foods which is a bit scary. i also drink with a straw to help with the fluid going down the right pipe.

[RecipeForDisaster]

11 hours ago, MikeO said:

Just watch it when eating meat. Cut it up in very small pieces and chew it well (32 times haha). i have swallowing issues as well. i have choked of some foods which is a bit scary. i also drink with a straw to help with the fluid going down the right pipe.

I’m so careful about everything and eat ridiculously slow (it’s a little embarrassing to take so long). I don’t eat meat at all, though. Soup is one of my favorites, and it’s especially tricky. I am hoping something there is fixable. 

[bumpkin]

I've never dealt with the dysphagia, but I understand it is scary stuff 

Since it is dysutonomia adjacent, having consumed a number of related videos and podcasts (functional medicine ones) I know I've definitely heard talk of there being neuro exercises that have helped some people recover from it, and it makes sense, swallowing reflex all comes down to whatever the brain has going on

Here's one study that goes into different approaches: 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9578488/

 

My response for stuff like this is usually "find a doctor who's studied through the Carrick Institute" they know their way around this sort of thing very well

[RecipeForDisaster]

8 hours ago, bumpkin said:

I've never dealt with the dysphagia, but I understand it is scary stuff 

Since it is dysutonomia adjacent, having consumed a number of related videos and podcasts (functional medicine ones) I know I've definitely heard talk of there being neuro exercises that have helped some people recover from it, and it makes sense, swallowing reflex all comes down to whatever the brain has going on

Here's one study that goes into different approaches: 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9578488/

 

My response for stuff like this is usually "find a doctor who's studied through the Carrick Institute" they know their way around this sort of thing very well

Thanks, I’ll check this out. I’m going to a big city clinic next month and have to do some repeat testing and a couple of new tests beforehand. 

[bumpkin]

@RecipeForDisaster Np, wish I could offer more info on that side of it, I mainly go for help with vision therapy and different exercises to calm the nervous system on rough weeks.. but I know they're trained on the dysphagia and different ways to stimulate an appropriate response there. Really fascinating stuff

[Eagle]

Hi all, this may be a bit random but just wondering if you have ever had your styloid process imaged via ct scan with contrast. I have had difficulty swallowing and tachycardia for going on 10 years as well as a host of other symptoms and recently discovered I have eagles syndrome. The bone or calcification is impinging  on neck veins and important nerves including the vagus nerve, throat and facial nerves. Yet to have surgery (as it’s difficult to find specialists who know/understand the condition). Bens friends forum is an excellent resource if you want to know or find out more. 

 

 

 

 

[RecipeForDisaster]

11 hours ago, Eagle said:

Hi all, this may be a bit random but just wondering if you have ever had your styloid process imaged via ct scan with contrast. I have had difficulty swallowing and tachycardia for going on 10 years as well as a host of other symptoms and recently discovered I have eagles syndrome. The bone or calcification is impinging  on neck veins and important nerves including the vagus nerve, throat and facial nerves. Yet to have surgery (as it’s difficult to find specialists who know/understand the condition). Bens friends forum is an excellent resource if you want to know or find out more. 

 

 

 

 

Very interesting! I haven’t had this imaging, but I’ll mention it at the next visit. 

[MikeO]

@RecipeForDisasterhave you had any imaging done on your cervical portion of your spine? By chance we found that curve of mine is a bit abnormal along with a few places that have severe spondylosis. PT was able to produce some undesired responses with some of the exercises they tried with me that pinched some of the nerves. 

[RecipeForDisaster]

11 hours ago, MikeO said:

@RecipeForDisasterhave you had any imaging done on your cervical portion of your spine? By chance we found that curve of mine is a bit abnormal along with a few places that have severe spondylosis. PT was able to produce some undesired responses with some of the exercises they tried with me that pinched some of the nerves. 

I’ve had MRIs and MRIs, showing just arthritis, bone spurs, and disc issues. I have weird and unpleasant effects from looking up or to the side if I do it very far. It can make me pass out. That is interesting - I will ask some doctors about it.

[mehganb81]

Is your eosinophil count zero on scope with dupixent?  My family is only partial responders to dupixent, thankful for more foods, but did not bring full remission of eoe for my kid.  

 

I have had trouble coordinating swallow in past with dysautonomia.  No structural problems and improved without intervention.  Are you swallowing saliva?  I was able to swallow small amount and sucked on coconut oil to keep my calories up.  Thick soups were easier than liquids.  I hope you feel better soon
 

 

[Eagle]

On 11/13/2024 at 1:28 PM, RecipeForDisaster said:

I’ve had MRIs and MRIs, showing just arthritis, bone spurs, and disc issues. I have weird and unpleasant effects from looking up or to the side if I do it very far. It can make me pass out. That is interesting - I will ask some doctors about it.

I would really look into Eagles Syndrome. One of the many symptoms is increased symptoms when moving the head, especially turning to the affected side (though sometimes it can be bilaterally elongated). I can’t turn my head to left without feeling like there is a lot a pressure building up, and certain increments of turning cause more eye pain/facial pain etc. The jugular vein and even the carotid artery can be impinged so heading turning only exacerbates symptoms. But also nerves as I mentioned previously. Symptoms are so varied. Even intolerance to cold/heat, sweating when cold, ringing in the ears. Pills constantly get stuck in my lower throat and start dissolving there. I choked on my cup of tea yesterday as it was going down for no reason whatsoever. And not everyone has the same symptoms as while we generally have the same anatomy in this area, its laid out to suit our skull size, jaw shape etc and the length/direction the bone/calcified ligament growing affects compression. When I look up just slightly, I get a feeling like I’m going to pass out - my heart races like crazy and it feels like my blood pressure drastically drops. 
There is little written about it so it takes many years of researching to even come across it as a possible cause for symptoms. I’m 10 years and counting but due for surgery in a few weeks. Anyway, may be worth anyone who feels the right diagnosis hasn’t be made or they can’t find a valid reason for all of the symptoms to look into it more. All the best to anyone going through the same thing. 

[RecipeForDisaster]

2 hours ago, Eagle said:

I would really look into Eagles Syndrome. One of the many symptoms is increased symptoms when moving the head, especially turning to the affected side (though sometimes it can be bilaterally elongated). I can’t turn my head to left without feeling like there is a lot a pressure building up, and certain increments of turning cause more eye pain/facial pain etc. The jugular vein and even the carotid artery can be impinged so heading turning only exacerbates symptoms. But also nerves as I mentioned previously. Symptoms are so varied. Even intolerance to cold/heat, sweating when cold, ringing in the ears. Pills constantly get stuck in my lower throat and start dissolving there. I choked on my cup of tea yesterday as it was going down for no reason whatsoever. And not everyone has the same symptoms as while we generally have the same anatomy in this area, its laid out to suit our skull size, jaw shape etc and the length/direction the bone/calcified ligament growing affects compression. When I look up just slightly, I get a feeling like I’m going to pass out - my heart races like crazy and it feels like my blood pressure drastically drops. 
There is little written about it so it takes many years of researching to even come across it as a possible cause for symptoms. I’m 10 years and counting but due for surgery in a few weeks. Anyway, may be worth anyone who feels the right diagnosis hasn’t be made or they can’t find a valid reason for all of the symptoms to look into it more. All the best to anyone going through the same thing. 

Wow, a lot of this definitely describes me. I will pass out if I look up or towards my armpit for too long, and no one has been able to figure this out. I’m glad you brought this up because I’ll definitely look into it, even though I would not be a surgical candidate!

[Eagle]

Yes please do. I have the same thing though haven’t passed out from it yet (though mine may not be as bad as yours if you do have it). These days I try not to move my head too much at all or my arm on the affected side. If I do either of these, my heart rate will increase and my blood pressure decrease. Apparently it’s that the vein becomes entrapped and the blood can not exit the brain.