3 replies to this topic

[sage!]

Hi all, trying (and maybe failing) to give a quick run-down on the dysphagia I've been dealing with for over a year in order to source some suggestions of next avenues to explore or supplements/exercises to try.

 

* 31 F, in otherwise decent health besides sinus issues that I've had as long as I can remember. Last ENT told me I do have a slight deviated septum. I have perpetually enlarged tonsils, probably just atrophied at this point since they're never correlated with a sore throat.

 

* Healthy weight for my height - ~130 lbs, 5'5, used to do heavy weightlifting (the big lifts - squat, DL, OHP, bench) 4x a week before wanting to give my shoulders/neck a break in case that's been leading to the dysfunction. Now I'm doing 30-60 min of yoga near daily. I don't really do cardio, tbh.

 

* Other chronic health issues for completeness, although I don't think they have any relation: I may have hEDS (I can check off most of the diagnostic checklist). I have migraines, always with a jagged line aura that dissipates in 20-30 min followed by headache; right now I'm in a "cluster" cycle where I'm getting one every two weeks or so, but that usually happens for a few months and then I'll go a year or more without any. I first started getting these when I was 23. These truly don't bug me much, there's a history of them in my family and they're really only supremely irritating when I'm driving and have to pull over to wait for it to pass. I have low blood pressure - I think orthostatic hypotension, as I see stars when I get up too quick.

 

* Swallowing issues came out of "nowhere" and slowly seems to be getting worse. My tongue feels clumsy/over-large. I feel as though I need to swallow multiple times. I feel as though my throat is too small for the food. When I swallow it doesn't feel like it will "catch." I really have struggled with how to describe it - swallowing isn't painful. When I drink water or other liquids it's relatively fine, although I find I often have to burp after swallowing, and I need to lean my head back to feel most comfortable. Somewhat infrequently, there's regurgitation when I burp. (When I told an ENT this, he said I should get that checked out by someone. Who other than an ENT would check that out...?)

 

* What's odd to me and why I think it might be a muscular issue at its core is that at the beginning of the day I feel at my best - I can usually eat the most solids then, admittedly still with a lot of water to wash it down. By the end of the day I'm eating ice cream or soup.

 

* I take 25mg of iron daily (Thorne), but no other supplements currently. I do not take decongestants, because one gave me incredible anxiety and tinnitus. (That was about 4 yrs ago, and I'm no longer sure of which one it was, sorry.)

 

* Doctors have told me it's simply GERD, but I disagree. I had heartburn during pregnancy 5 yrs ago and only then, have never had it before nor since. I understand there's "silent" GERD, but doing a 14 day pack of omeprazole did absolutely nothing.

 

* I've also been told it's anxiety. I had successfully managed my anxiety with CBT for years prior to this. Naturally, the situation is stressful, so I do feel "anxious" about it, but not overwhelmed or despondent. I really enjoy eating, and I enjoy lifting weights, which very much requires adequate caloric intake -- this affects those negatively. But there are still many, many things in my life I'm grateful for, so it's hard for me to agree that this is all "in my head." I'm making my husband come with me to the next doctor I see to advocate more strongly for me.

 

* Barium swallow (done early on, at the onset of symptoms) revealed nothing unusual. ENTs have scoped my throat 2x and haven't noted anything that screams "cancer," but one said "it's like a bomb went off in there" mucus-wise (cool, thanks, haha). Gave me a steroid shot which, again, did nothing.

 

* I'm thinking of getting my deviated septum fixed + a tonsillectomy to see if either of those help.

 

* Last month, I tried Garden of Life RAW Ultimate Care 100 Billion for 30 days, as well as PectaSol MCP powder. Didn't notice any changes.

 

* Eating healthy is exceptionally difficult for me right now. I can barely eat solids except ones that almost fully liquefy/turn to mush. I was thinking of incorporating more smoothies. I need to improve my diet, but I'm at the point where all I seem to do is chew up and spit out 95% of a meal. Obviously, that's nasty and I don't feel comfortable going out to eat anymore.

 

* I do have a chiro that I like, and I feel good after an adjustment, but there hasn't been a noticeable effect on my swallowing. Still, maybe I should try to commit to more adjustments? I only go every 6-8 weeks. I'm only in the state for the next month, though, as we'll be moving shortly, so would only be a short-term option until I find new providers in the PNW.

 

* Since the dysfunction appears to originate in my mouth (i.e. the initial act of swallowing) rather than in my throat, should I contact a speech/language pathologist?

 

TIA for any tips you might have.

 

- sage

[KalebRamirez]

this is a very useful post for me

[Mind]

Smoothies are a good option while you sort things out. You can get all the nutrients you need. Your diet might even end up better if you stick to healthy ingredients that you enjoy. There are also products like Soylent that come pre-made with every basic nutrient you need.

[adamh]

This is a confusing set of symptoms. You say your throat feels like its too small to swallow food but your doctors don't see it that way. To me this sounds like a physical/psychological problem. Your throat is not too small to eat solid food, but you hate to do it. Do you have fear that you will choke? Can you swallow if you concentrate on it or force it down by swallowing hard? If it goes down normally after you swallow then all you need to focus on it getting past the psychological part. If however it sometimes goes down your trachea, that is a major problem but you didn't mention that.

 

My inexpert hunch is that there was some damage to nerves in that area. That could greatly affect the way food feels and might induce panic if you have the sensation its going to go into your lungs and choke you. The damage could have been in the brain, a micro stroke perhaps. This caused the sensation of chewing and swallowing to feel totally different and threatening. Your tongue feeling thick and clumsy reinforces my hunch. You mention migraines, that doesn't prove its brain related but might be an indication.

 

Solutions to the problem could be varied. You are able to swallow soft food so the muscles involved are working, at least well enough to get the job done. Some form of behavior therapy might help. Or just focus on the sensations of eating and swallowing and the point at which you reject swallowing it down and feel you have to spit it back out. If you can convince yourself to go ahead and swallow in spite of the difficult or scary sensations, you will be over the hump. Next would be to do that every day, not just in the morning but when you start only drinking your food, force yourself to swallow at least one bite. If that is not so traumatic, another bite. Next day, more bites etc until you are reasonably comfortable with the process.

 

My opinion, and I am not a medical doctor, is that if you keep avoiding dealing with it head on, you may spend the rest of your life eating smoothies and not able to eat solid food later in the day. What is the worst that could happen if you force it down? You may have a panicky feeling but you won't die. 

 

If indeed its a problem with a bleed or something in the brain, there are drugs for that. Hyperbaric oxygen therapy might help. Talk to your doctor about these possibilities.