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Your lips move but I can't hear what you say...

Discussion in 'Neurological/Neuro-sensory' started by Lee Ann, Oct 30, 2012.

  1. Lee Ann

    Lee Ann

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    I've read lots of post here of people describing their fatigue. What I experience (fatigue) doesn't seem to be what most people describe. I just saw a neurologist last week hoping to get a "new set of eyes" on what's going on with me. The only way I could describe my feeeling of "fatigue" to the doctor was...It's as if I have taken a sedative and my brain slowly becomes sedated. If I do not lay down, I feel like I will collaspe. Not faint or pass out, but my body WILL go down. I also cannot process words if someone is talking to me. There is a song Pink Floyd sings and one of the lines is.....Your lips move but I can't hear what you say..... Thats me.... It is freaking CRAZY. I hate it.
    Does this weirdness happen to any of you?? I just feel like I'm the only one feeling like this.
    Thanks for listening
     
    gracey likes this.
  2. Sparrow

    Sparrow Senior Member

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    No, I absolutely have that. I also have difficulty focusing on faces when I get into that state (sometimes I'll catch myself just staring at the ceiling or out a window if it gets really bad), and lose the ability to both talk and register that someone else it talking at the same time (so I can try to speak, but don't realize if I'm talking over someone or if somebody interrupts me to ask a question or try to clarify something. Literally am not aware they're speaking until I'm done). I'm also often sweaty by the time this happens.

    This is a sign that I have REALLY overtaxed my conversation reserves, and need to be somewhere quiet immediately. Otherwise I usually have PEM as a result. Or that I've been standing too long and need to lie down immediately.

    I think of my brain and the rest of my body as being sort of a rechargeable battery. And that is the sign that the charge in my head is way low. :)

    Definitely not just you.
     
    taniaaust1 likes this.
  3. GracieJ

    GracieJ Senior Member

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    Oh, you mean that beyond overtired moment when I am reminded of the Snoopy cartoons when the adults are talking?? Don't even know how to write that down phonetically... and very hard to feel that way when it is one of my grown children or tiny grandchildren doing the talking.
     
  4. jimells

    jimells Senior Member

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    Yup, I know that feeling well. I describe as an irresitable urge to lay down.

    I'm like the battery in my 10 year old laptop computer. No matter how long it recharges, it will only last two minutes, then the computer hibernates. Just like me.
     
    Sparrow and madietodd like this.
  5. nanonug

    nanonug Senior Member

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    Yes, I have this too. I suspect its induced by Prostaglandin D2, a mast cell mediator and powerful promoter of sleep.



    Sleep Med Rev. 2011 Dec;15(6):411-8.
    Prostaglandin D2 and sleep/wake regulation.

    Urade Y, Hayaishi O.
    Source

    Department of Molecular Behavioral Biology, Osaka Bioscience Institute, 6-2-4, Furuedai, Suita, Osaka 565 0874, Japan. uradey@obi.or.jp
    Abstract

    Prostaglandin (PG) D2 is the most potent endogenous sleep-promoting substance. PGD2 is produced by lipocalin-type PGD synthase localized in the leptomeninges, choroid plexus, and oligodendrocytes in the brain, and is secreted into the cerebrospinal fluid as a sleep hormone. PGD2 stimulates DP1 receptors localized in the leptomeninges under the basal forebrain and the hypothalamus. As a consequence, adenosine is released as a paracrine sleep-promoting molecule to activate adenosine A2A receptor-expressing sleep-promoting neurons and to inhibit adenosine A1 receptor-possessing arousal neurons. PGD2 activates a center of non-rapid eye movement (NREM) sleep regulation in the ventrolateral preoptic area, probably mediated by adenosine signaling, which activation inhibits the histaminergic arousal center in the tuberomammillary nucleus via descending GABAergic and galaninergic projections. The administration of a lipocalin-type PGD synthase inhibitor (SeCl4), DP1 antagonist (ONO-4127Na) or adenosine A2A receptor antagonist (caffeine) suppresses both NREM and rapid eye movement (REM) sleep, indicating that the PGD2-adenosine system is crucial for the maintenance of physiological sleep.

    PMID: 22024172
     
  6. taniaaust1

    taniaaust1

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    From what you describe there with all that.. I personally think you extremely likely do have a orthostatic intollerance issue (dysautonomia) going on and should be tilt table tested to find out which.

    Thou I used to get dizzy with the postural orthostatic tachycardia syndrome (POTS) .. I dont get the dizziness with it as much now and often it now just manifests as a slowly worsening brain state along with that feeling that if you dont lay down you will collapse (desperate need to lay down). It is likely you actually may at some point find that a full collapse or even unconsciousness may occur if you were actually forced to stay upright too long.

    When blood isnt getting the ones brain well due to an orthostatic intollerence issue.. ones brain struggles to function too and this can make talking or thinking/understanding hard. It leaves me at times unable to understand language or talk.

    If Im correct that you have something like POTS, you will likely have to find a different specialist to a ME/CFS one for this as most (not all) ME/CFS specialists dont have a clue when it comes to POTS.

    Your current illness seeing you are having trouble getting a good diagnoses from your doctors, it may turn out to be not ME/CFS but just something like POTS which can cause many ME/CFS symptoms and hence can be confused with ME/CFS.

    You may be able to work out whether you only have POTS (or another OI issue) causing your symptoms or whether you have both these things (having both are very common in ME/CFS people), by the posts and getting advice on this forum and IF it is POTS, that is testable even at home so at least you should be able to find out for yourself and then know what info to be getting across to your docs (doctors dont have a clue when it comes to less common conditions). Once you've sorted that out.. you will know more what kind of specilaist to be trying to see first... POTS/OI specialist or a ME/CFS specialist or if you need to be seeing both of these.

    I suggest for you to read up on POTS but understand it manifests differently for different people. One thing all POTS people tend to have is an urgent need to lay down at times along with worsening symptoms when upright or on ones feet. (the POTS heart stuff you may not notice going on at all with it unless you are actually taking your pulse or better still using a monitor and POTS testing correctly. POTS is diagnosed by how your heart responds from laying to standing. It isnt a heart issue as such as ones with it do have healthy hearts thou but rather an autonomic disorder.. dysautonomia.).

    http://www.dinet.org/pots_an_overview.htm (check out this link and site).

    I strongly suggest to avoid getting labeled with "CFS" IF all your symptoms can be explained by POTS (as a CFS diagnoses could affect the treatment you get from many doctors and having another diagnoses which explains all ones symptoms is meant to rule out CFS). So if it does turn out you have POTS (when you self monitor) you may want to just focus on that.

    Things like sore throats, swollen glands, immune issues as part of your symptoms thou would point more to you also probably having ME/CFS on top of having an OI issue as they arent symptoms those who just have POTS alone get
     
  7. Mark

    Mark Acting CEO

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    Hi Lee Ann - In case you don't know the name of the song you mentioned, it's Comfortably Numb:

     
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  8. Mark

    Mark Acting CEO

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    And in case you haven't seen this video, it's a bit special...full-screen it...

     
    Crux likes this.
  9. arx

    arx Senior Member

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    Absolutely. I've felt that feeling (Un-Comfortably Numb) many times. They intensify a lot with electrolyte and sugar imbalance.That feeling when I cannot process anything and HAVE to lie down, coupled with extreme irritability and rage (particularly towards anyone who is talking or any other sound) is well, hell. Talking and even doing anything seems like too much then.Even when I lie down I am hoping that I pass out,but I don't. I know exactly what you mean.
     
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  10. arx

    arx Senior Member

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    For those of you who like Comfortably Numb, here is one my favorite live version of it:


     
    Crux likes this.
  11. Sparrow

    Sparrow Senior Member

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    Hee hee. I have used that exact analogy before. That's completely what it's like.
     
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  12. Lee Ann

    Lee Ann

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    Thanks everybody for your input. It's helpful knowing that what I am feeling is not my imagination. I'm having a sleep test done in a couple of weeks. I'm also having a test(don't know the name) to check the blood flow in my brain and an EEG. Maybe a SPECT too. Hopefully, someone can give me a concerte diagnosis. If not then I will somehow have to learn to accept the fact that at this time, this is my situation. Nothing last forever in THIS life. I will continue to remind myself of my eternal spirit life and where my home REALLY is. God Bless You All !
     
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  13. Loopymama

    Loopymama

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    I definitely have everything you mentioned...you are not alone in that!
     
  14. Dufresne

    Dufresne almost there...

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    The first time I spotted this thread it was positioned directly above another about "swollen hands," which of course relates to other lyrics in the song. Weird coincidence.
     
  15. gracey

    gracey

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    Oh dear, I want to say so much about this Lee Ann, but Im not able to write All my thoughts right now ... For me, if I understand what your saying correctly, its not exactly like feeing sleepy. It doesnt feel like the spells of somnolence... and not really a drugged, narcotic feeling either, even tho sedated is a good word cause the brain does feel like its shutting down and the body along with it.... it does feels similar to being sedated heavily, but it doesnt feel relaxing or good.... I call it my body and brain shutting down (to my family) but Ive never told a Dr, yet. I need to see a neuro so bad but Im in such bad shape getting to the dr now is a huge problem. Please let us know what the dr says about your tests and I pray you find some answers! (I only have an official FM diagnosis, but I have near all the ME symptoms ...near 30 years of symptoms and reading and researching and rude unknowledgeable dr.s.) I have so much more I wish I could type... Thanks for posting and God Bless!!
    You might want to read what I said to arx also? I ended up writing more than I thought I could and explaining more of what I experience.
    I thought I hit post in my reply to you but I didnt and saw that, at first, both replies were in the same box LOL so I copied arx;s and then resent separately... I hope.
     
  16. gracey

    gracey

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    Arx... thank you for posting... If I am understanding what you're saying... when this happens to me, I feel like,,, well... my brain is going to explode or vaporize or something.... tho this can happen without the feeling that my body is shutting down too.... for me its not the same as the heavily sedated brain and whole body shutting down feeling... (that I talked to Lee Ann about above) thats frustrating and crazy but doesnt have as horrible a feeling with it. BUT yes as you said, during this too, I DO have to lie down and feel like if I hear one more sound of input to my brain I will cease to exist or something, and even thinking is input and I hope to pass out or fall asleep too cause it feels sooo horrible, way WORSE than the body and brain just shutting down thing.....if Im understanding all this correctly. I put my fingers in my ears til I get to the bed and my earplugs and shut my eyes tightly too. I dont do that when I have the sedated shutting down thing, for me thats more like, my brain is numb to everything and not even acknowledging any noises or input just shutting down in a sedated way. Geez I hope that makes sense. I have even laid down with the sedated shutting down thing, when workers were sawing on the wall outside my bedroom with a saw-all, just a foot or so from the bed, (we were having the bedroom added on to cause I spent so much time in here alone and it was really small). When I have the sedated shutting down thing, I do sort of pass out or sort of sleep or something and its usually almost exactly in 2 or 4 hours spells.When its over, I dont feel like Ive been asleep, I either feel wide awake immediately but I feel sick if Im roused before it comes naturally. Maybe its some sort of seizures???
    I dearly hope Im not misreading you guys and I hope Im not babbling too much casue I know Im not at my best at the moment... I wrote more than I thought I could and now I gotta lie down, but oh well... Im really so glad to have connected with ya'll about this! :)
     
  17. gracey

    gracey

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    I still need and want to REread some other posts in this thread when feeling better.... but thank you all for sharing... I havent been communicating much anywhere on the web for about 6 months, or with family either, and Ive felt more isolated than ever, so I guess you can tell that I'm extremely glad to have found this conversation! ;)
     

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