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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Swallowing

Discussion in 'Gastrointestinal and Urinary' started by Flashster, Sep 22, 2011.

  1. AFCFS

    AFCFS Senior Member

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    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.
     
  2. Anna Wood

    Anna Wood wood/sheridan

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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!
     
  3. Flashster

    Flashster

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    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.
     
  4. Flashster

    Flashster

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    How are you doing Anna? Please reply and let us know if you around.
     
  5. Flashster

    Flashster

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    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
     
    SickOfSickness likes this.
  6. golden

    golden Senior Member

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    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 .
     
  7. PNR2008

    PNR2008 Senior Member

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    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.
     
  8. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

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    Autonomic dysfunction constricts the gullet caused by nerves. I often have problems swallowing but now take small bites and no stodgy carbs and that helps. I also have water near by to help food down. Eat slowly, too.
     
  9. Flashster

    Flashster

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    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
     
  10. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

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    That's interesting. Good luck with that. I don't think I have ED, but have dodgy kneecaps and my elbows flex backwards. Maybe another link?
     
  11. Flashster

    Flashster

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    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.
     
  12. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

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    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.
     
  13. Flashster

    Flashster

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    That is interesting. I guess whether you are diagnosed with ED/ME/POTS depends on who you see. The ED Prof noticed stretch marks, stretchy skin etc that I'd always had.

    Are you on brainfog group TCP36?
     
  14. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

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    I'm wondering if they have a common connection and are definitely linked somehow? Perhaps they all have a common characteristic or one can be the catalyst for the others possibly developing?

    Not not in that group.
     
  15. SickOfSickness

    SickOfSickness Senior Member

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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.
     
  16. leela

    leela Slow But Hopeful

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    This nice lady seems to see a link:
    http://www.prettyill.com/
     
    Wayne likes this.
  17. Wayne

    Wayne Senior Member

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    Thanks Leela for posting this link. I love this woman! :thumbsup:
     
  18. WillowJ

    WillowJ Senior Member

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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)
     
  19. Sasha

    Sasha Fine, thank you

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    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.
     
  20. marple

    marple

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    I also have problems swallowing, but not all the time. Can happen sometimes with tablets or food. I find it normally happens when yeast problems are at their worst.

    Good luck with all your investigations.
     

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