This is what my neurosurgeon found. Also had some brain inflammation. I had noticed some swallowing problems intermittently. I think if it was just anxiety it would go away when the anxiety passed. The whole ball of wax may also be tied in with sleep apnea.
Swallowing
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Anna Wood
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Hello, I wonder if someone could give me some advice. Every now and again I find it hard to swallow and have to really concentrate - this happens especially when I'm particularly exhausted. But the last few days it has got really bad and I've choked a couple of times when trying to drink. Oddly eating is pretty much ok, just a bit slower than normal as I'm being careful. Now I'm really struggling to drink anything- I can sometimes sip some water, but when it comes to swallowing I can't make it happen, and end up spitting it back out. I don't know if it is 'just' anxiety from the scary choking episodes, or an ME symptom, or a combination of both. I'm pretty much housebound, but not really in the severely affected category. It is worse, I think, as my husband is away at the moment which makes me worry about choking. Thanks!
Hi Anna.
Lots of people with M.E. have intermittent swallowing issues. They seems to get worse if you are tired or think to hard about swallowing. My issues, described in this thread, are always there and I am unable to swallow solids any day no matter how I feel. This came on 2 years ago - until then I just had the usual ME swallowing like you describe. They think it may be a condition called Elher Danlos hypermobility type which can be associated with M.E.. This doesn't sound like you as I can swallow liquids ok, but not solids.
I would presonally try and calm yourself and perhaps get some ice lollies to slowly get some moisture in your throat? I found distraction helps a lot - do something that will really busy your mind whilst sipping something?
Obvioulsy I'm no expert so if you feel you are getting dehydrated and cannot swallow liquids at all, seek medical advice.
Lots of people with M.E. have intermittent swallowing issues. They seems to get worse if you are tired or think to hard about swallowing. My issues, described in this thread, are always there and I am unable to swallow solids any day no matter how I feel. This came on 2 years ago - until then I just had the usual ME swallowing like you describe. They think it may be a condition called Elher Danlos hypermobility type which can be associated with M.E.. This doesn't sound like you as I can swallow liquids ok, but not solids.
I would presonally try and calm yourself and perhaps get some ice lollies to slowly get some moisture in your throat? I found distraction helps a lot - do something that will really busy your mind whilst sipping something?
Obvioulsy I'm no expert so if you feel you are getting dehydrated and cannot swallow liquids at all, seek medical advice.
I just wanted to add that I had the Esophageal Manometry this week. It wasn't so bad at all - I did get him to spray lots of aneasthetic down my nose thought so perhaps that helped. No gagging. In fact the hardest bit was not swallowing when they were taking readings.
The person doing the procedure didn't give much info on the results but did say that the perystalsis is weak in areas and sometimes the volutary swallowing bit didn't trigger the involuntary swallow lower down.
So the good news is that it appears they can see the problem and at least they'll beleive me now. However, none of this seems curable and hopefully doesn't mean I have anything degenerative.
I await the results....
Flash
The person doing the procedure didn't give much info on the results but did say that the perystalsis is weak in areas and sometimes the volutary swallowing bit didn't trigger the involuntary swallow lower down.
So the good news is that it appears they can see the problem and at least they'll beleive me now. However, none of this seems curable and hopefully doesn't mean I have anything degenerative.
I await the results....
Flash
The perrin technique
helped me with swallowing and i am eating no problems although it does get a bit funny at times.
Also vegetable juicing is very important for me.
My throat always has a red arch at back and it flares up during relapse.
I really do not like my throat swelling its taken ages to learn to relax through it.
I was encouraged by Waynes response to dentistry as I am getting my mercury filling replaced shortly .
helped me with swallowing and i am eating no problems although it does get a bit funny at times.
Also vegetable juicing is very important for me.
My throat always has a red arch at back and it flares up during relapse.
I really do not like my throat swelling its taken ages to learn to relax through it.
I was encouraged by Waynes response to dentistry as I am getting my mercury filling replaced shortly .
I have had swallowing problems about the last 5 years, that also get worse with spooning clear soup in my mouth. It's as if the muscles tire easily and "choke up". It's interesting that during the same time my head started shaking as if the muscles constricted in the back of my neck. Lipstick is especially difficult to put on, so it's more of the position of my neck and head that does it. Also stress like getting ready to go out or writing checks make it worse. My neurologist is a movement disorder doctor and he thinks botox will help since I already get it for migraines. I don't know essential tremor seems like another waste bucket of symtoms, so I'm at a loss on how to help this situation which I think is credible because it is so noticeable and embarrassing.
I just thought I'd better post an update:
After exhaustive testing, and no improvement in my swallowing, a rather preceptive neurologist sent me to a person in London who is in the process of diagnosing me with Elher Danlos (hypermobillty type). I had not heard of this nor realised it could cause swallowing issues. Its not treatable as such, but is manageable. I wonder whether its been this all along and not M.E..
I hasten to add that if your swallowing issues come and go it doesn't mean you have this at all. I've been on liquids for 2 years and even they are a challenge so hence my need to investigate further.
Before that I had swallowing issues lower down, but they came and went.
A swallowing manometry seems the way to go to show the weakness in the throat. Video fluoroscopy's and endosocopy don't seem to show this. My GP completely dismissed my swallowing issues. Yet the test showed 7 times out of 10 wet swallows produced no peristalsis at all. That's why food got stuck.
Flash
After exhaustive testing, and no improvement in my swallowing, a rather preceptive neurologist sent me to a person in London who is in the process of diagnosing me with Elher Danlos (hypermobillty type). I had not heard of this nor realised it could cause swallowing issues. Its not treatable as such, but is manageable. I wonder whether its been this all along and not M.E..
I hasten to add that if your swallowing issues come and go it doesn't mean you have this at all. I've been on liquids for 2 years and even they are a challenge so hence my need to investigate further.
Before that I had swallowing issues lower down, but they came and went.
A swallowing manometry seems the way to go to show the weakness in the throat. Video fluoroscopy's and endosocopy don't seem to show this. My GP completely dismissed my swallowing issues. Yet the test showed 7 times out of 10 wet swallows produced no peristalsis at all. That's why food got stuck.
Flash
That's what I have too. Feels like the kneecap is out of place a little sometimes.I don't have much joint issues at the moment. The swallowing is my main symptom, so I was surprised at the apparent diagnosis.
The chap who diagnosed said ME and ED are linked (perhaps he means they often diagnose people with ME with it.). I have thought that it may be possible ME is in fact mild ED...? (not that ME is mild for many ofcourse).
Its interesting that one feature of ED is that the gut/throat get saggy and can't move food through them. This can lead to digestive and food intolerances. I was told that even gastroenterologist's don't know much about ED so don't tend to spot it.
The chap who diagnosed said ME and ED are linked (perhaps he means they often diagnose people with ME with it.). I have thought that it may be possible ME is in fact mild ED...? (not that ME is mild for many ofcourse).
Its interesting that one feature of ED is that the gut/throat get saggy and can't move food through them. This can lead to digestive and food intolerances. I was told that even gastroenterologist's don't know much about ED so don't tend to spot it.
I think there is a link, as many people with ME, POTS and EDS have one or all of these problems. Shows how complex this is. I found out via the dinet website forum where people talk about autonomic dysfunction, ME and EDS.
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I just read there are 6 types of EDS. At least one is rare, though.
EDS seems to cause chronic joint pain and some other symptoms that sound like ME/Fibro. It seems like a bunch of people get misdiagnosed, where their EDS is missed.
I think they're related and can be a cycle where some of them contribute to the others. I am guessing, but I feel like two of my interactions are: My Fibro and ME give me problems (symptoms) resembling EDS, without having me having the EDS genetic markers. Fibro, EDS symptoms, and low blood volume lead to my autonomic problems (not POTS but orthostatic hypotension), which then increases ME symptoms.
EDS seems to cause chronic joint pain and some other symptoms that sound like ME/Fibro. It seems like a bunch of people get misdiagnosed, where their EDS is missed.
I think they're related and can be a cycle where some of them contribute to the others. I am guessing, but I feel like two of my interactions are: My Fibro and ME give me problems (symptoms) resembling EDS, without having me having the EDS genetic markers. Fibro, EDS symptoms, and low blood volume lead to my autonomic problems (not POTS but orthostatic hypotension), which then increases ME symptoms.
Wayne
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not all the kinds of EDS have known genetic markers. (I think there might be other related diseases which also don't yet have markers, if I understood the report from my sister's doc correctly)
Interesting - I came to this thread because lately, I've been finding that when I eat an omelette (which I do twice a day, to keep my protein levels up), some of it remains stuck in my throat and I have to wash it down with water. It doesn't seem to happen with any other food. An allergy hadn't occured to me.
I'm sorry you're having such trouble, Flashster - at the level that you're experiencing it, it must be a very distressing symptom.