Difficulty In Swallowing Food And Voice Change.

[willows]

hello all.

Yep , Its me I'm still here and working , a lot slower for CHSW , but still about .

Right , I have an awful problem , one which I have kept quite about until today when I went to see my Doctor ............who was somewhat shocked and surprised by it .

It started about 12 months then I lost the ability to sing , OK you'll say so what ? but I've always been able to sing and have the very good voice ( various choirs + stage work ) now there is nothing there.

About 8 months ago I started having bouts of voice loss for a minute or two and the feeling of something stuck in my throat .

About 5 months ago the voice loss became very prominent and it now lasts for anything up to 2 minutes and my voice is NOT MINE anymore, sort of lower and rougher !!!!

6 weeks ago ............and this is why I've been told off , I started getting the feeling that this something in my throat has got larger and its now causing real problems for me , in fact I 'm having problems eating and swallowing to the point I've lost over a stone in a matter of a few weeks.

I know my grandmother had something like this because she had a huge scar all the way around her throat which us kids loves to drawer beads on with a Biro ............. well we where kids !

But the inability to swallow is something quite unsettling , its like I have a permanent load of drugs stuck in my windpipe and getting food past this place is awful as I can feel everything that I swallow and by the end of the day its so bad I just cant eat ..........................after not eating ( alseep , or so I'll say ) its calmed down again and then off we go with another day of struggling to eat things .

So I'm having an emergency test done , you know the one where they stick a camera down to have a look about , \I've had it done before so I know what I'm in for and I'm not worried by it at all .

So ...........has anyone else got this problem ?????????????????

Is it just me or is this another POTS little nasty .

My hips/base of spine is also very bad now and there's some talk that if it does degenerate anymore well ..................I wont go there but Corina knows what I fear and its not nice .

Take care all and if anyone has any idea other than thinking I've scratched it ( no ) hit it ( no ) or have swollen glands ( no) let me know .

Ami .

[Miriam Poorman-Knox]

Ami,

Yes I too live with this challenge. My diagnosing Doc said that singing is something that would cause problems. I am clergy, not that I "CAN" sing well..... As for the inability to swallow. I think that the lack of fluid causes this. And the mouth, throat can get dry first. So I sip as I eat small bites. Might help till the tests are done. I have also contractions in my throat, very painful. But they go away. I am aware of them and respect them. Miriam

[darren]

I don't have the issues to the same extent but when I start to crash it starts in my voice first. Sometimes I can't get words out and I feel like something is stuck in my throat. I make these ridiculous coughing/hacking sounds. My family can tell even on the phone.

[tiger]

I have this too for 2 yrs now. It started after I started taking a beta blocker for pots and now my symptoms are like full blown myasthenia gravis. I have a lot of facial muscle fatigue, gets worse with activity. I hope you don't have that.

[Megan]

Have you had your thyroid checked? I'm not sure if the symptoms match, but that's the first thing that came to my mind.

Meg

[corina]

ami,

i can't remember if we have ever talked about this before but actually i have the same things. once when i was talking to my family doc ,the not being able to sing popped up (unplanned, as i always thought that my doc would call me very very nuts when i told him and that i would loose his respect) and he told me that it was natural that when i'm upright and my brain wants/needs the available oxygen, the singing is cut off. he told me that the oxygen is transported to where it is needed most.

the swallowing porblems come and go for me. i felt it starting again last night, but it has been much less for about half a year now i think. to me it feels like when something is in my "drain" as i call it (doesns't matter whether it is a kind of food or my own fluids) it makes me/my body react as if it doesn't belong there and i start coughing very very bad and i can tell you that there have been several times that i thought it was the last thing i would ever do, if you know what i mean.

i am almost sure that for me it is the dysautonomia, my body does the most weirdest things and have to try and live with it (and do know that i am very determined to do so!!!!). but that is just for me!!! i hope for you that tests will proof what is going on. i am very sorry you have so much going on but am ever so proud of you the way you and your family deal with everything AND take (precious) time to work for the childrens hospices. i know your fears about the wheels and i think i fully understand. i wish you all the best and send you a big hug,

corina

oh, meg: doctors have been testing my thyroid for as long as i live (44 now!) and never found anything wrong with it. at times they seemed very disappointed

[morgan617]

I have poor motility, and strictures in my esophagus. When I'd finally lost 45 pounds or so, they finally started to believe me.

The stricture is very high up, which is unusual, and the motility makes it worse. I am not a singer, by any stretch of the imagination, but I get hoarse too, probably because of reflux at night, which causes irritation and hoarseness. You can reflux food and bile all the way up into your larynx, and it can really burn it.

I get my esophagus dilated every 8 weeks, or I am back on baby food and liquids. It feels like everything that goes in my mouth, stops part way down and then just sits there. I choke all the time. morgan

[lotusflowersusan]

I am seconding Meg's comment about having your thyroid checked if it has not already been ruled out. I had very similar symptoms before I had my thyroid removed (and now have the lovely scar, is that what your grandmother had?). I had a goiter (not noticeable to the casual observer, only noticed by doc palpating the thyroid) that was pressing on my esophogus and causing me to fill like I had a continual lump in my throat. I also had some of the voice problems (have done some singing myself).

I also remember the surgeon being very gald that I could still talk after he removed my thyroid, because the thyroid is very close to some nerves involved in voice. (yes, very technical explanation )

May be more dysautonomia than thyroid, but I saw a lot of my symptoms in your post.

[mcaimless]

You might want to mention to your Doc to check for Myasthenia Gravis or, more likely with dysautonomia, Lambert-Eaton Myasthenia Syndrome. Do a google search for LEMS and see what you think. Here is a link to a general overview of it: Lambert-Eaton Myasthenia Syndrome

Good luck and I hope you get answers soon!

[pearsjon]

i sympathize w/ u on the singing. i was always in choir, gigs of some sort,and anytime someone will listen. i was good,too. like u this is a really difficult thing 4 me to deal with. i push it and do it anyway, which leads to u know where. i also had the losing the voice w/ the swallowing. i can say that the swallowing difficulty, has waxed and waned. but the voice change is just like u describe. all of the sudden i don't recognize my own voice. asked doc, he said u r really exhausted at that point, even if i don't feel it. body saying lie down.LOL like i could really do that. he sent me to have endoscopy done ,but i had already done that b4 so i skipped it.

i can swallow some times and i swear i can't breathe. my b/f looks at me like iam nuts and worried. i am literally gasping 4 air. son't understand it, don't know why, so i chalk it up to dys. but it is a veryscary thing to have happen. i also "choke" alot. like i was drinking my water yesterday and i started choking b4 i even swallowed (at that point i could not swallow) so i ened up spitting the water eeverywhere, scaring my boyfreind who thought i was vomitting agian .

the part about having something stuck in ur throat *****. it lasted for me a long time. it is still there just not as bad. i haven't found anything that helps. i hope u have success in finding out what it is and that it is not what ur grandmother had.

i seem to live in a preverbial course of choking no breath and swallowing probs, along with a constant sinus thing. been coughing, blowing and hacking up brown and yellow junk for 4 mths now. i don't know why, chest x-ray was clear. go figure.

not being able to sing is the pits. i am sorry u r dealing with that too. i tried humming, same reaction as singing. just another ur not alone post. i wish i could help more.

[ajw4790]

That sounds scary and totally awful. I don't have any words of wisdom or experiences with this issue, but I know that I have seen in (of course these posts), past posts, and websites etc. where things like this is mentioned. Especially singing being a trigger of symptoms.

I hope that test goes well and that you find some answers!

[Megan]

A slightly unrelated thought - singing gets to me sometimes just because of the breathing patterns. It makes me dizzy/presyncope-y. I've never had the other problems, though

Meg

ps-corina: sometimes dr's bother me when they are like that! :-)

[willows]

Thank you all so much for your replies,

Its nice to know its not just me 'going off her rocker' and that others have this problem to , but then , if you've got it as well I do feel sorry for you as I find it both upsetting and down right annoying as getting food down past the point thats 'gone haywire' leaves me exhausted at times.

I'm drinking loads , so the dehydration point is a none starter and I hardly ever get a dry throat .

Nope, its just this awful 'thing ' in the throat and the voice going from a sort of 'lower tone me' to what appears to be the voice of a transvestite .............not that there's anything wrong with thier voices , but its just I 'd rather sound like me

I'm still working hard with Hogworts Castle , if you look on my charity site you'll see under events in Judy's diary that I'm now listed for the 24th and 25th May on Plymouth Hoe Devon , so come and see me if any of you are about .

My life size Dobby the house elf arrived with all the professors gowns and its a case of just doing the castle painting and its all ready .

So fingers crossed guys as I'm going to see the specialist on Tuesday 22nd April at 12:30 pm , my doc got it very quickly for me ( about 8 days ! ! ! ) becuase if I loose my voice again before the event , who will run it for me ????? I have as yet not trained anyone up .................OOOOOOOOOOOps so the ear , nose and throat man had better come up with a good answer or some tip-top help because a lot of money, time and effort for the past 8 years has gone into Hogworts and I'm not going to let POTS stand in my way ....................so there

By for now everyone , I'll write in the chit-chat section in a few days time about Hogworts Castle and on here again once I've had my throat inspected , oh , I'll see if I can post some more photo's of what I've been up to with the charity later on as well .

Look after yourselves and I will send out a mass email again as soon as I have a few minutes to spare that isn't to do with Hogworts .............and I can stand upright ......... actually see in a single vision instead of two .......... and an awake

Love to all Ami XXXXXXXXX

[Troy]

I also experience difficulty swallowing particularly when i try to eat breakfast in the the mornings when all my symptoms are at their worst, it feels like for some odd reason my food pipe is shrunk or narrowed and the first few bites of food I take force their way down slowly like and i can feel its movement as if the foods trying to squeeze through a small gap. ocassionaly it gets stuck and makes me feel out of breath and I have to drink liquids to help it go down, its an odd uncomfortable feeling but as the day progresses it gets easier for me to swallow.

[willows]

Hello all again,

Today I went to see the ENT consultant , just 8 days after seeing my own GP was that quick or what !!!!

Anyhow I took with me my full drug list ............which I think you can say 'blew him away' and also a copy of any replies you posted on here , names and everything taken off so he doesn't know where they came from or who you all are .

He read all of your replies with great interest and said what a brilliant idea to have a site that you can ask people who have the same condition as myself if anyone else has this problem and what they have done etc, having such a complex and rare condition like ours really causes problems for UK consultants to deal with , unfortunately .

He then got me to do the normal face , mouth checks and then count up to 100 .........and with every number blink once OMG you try it , hard ..........er understatement I kept getting lost and my voice was up and down like a lad who's going through puberty .

Next came the nasty part , he then shoved a long tube up my nose with a tiny camera attached to the very end ........had a look about ..........ouch , tears streamed down my face

Then he went into the other side of my nose .............ouch , ouch .........more tears along with the mascara I'd tried to put on that morning , so I now looked like a panda with a bright red nose !

Thinking , as he withdrew his nasty tube , thank heaven for that ............he went back into the first side and started to go down the back of my throat . OMG ..................this was not nice and of course I started to heave somewhat , but he carried on and asked me to swallow , then talk ................er , excuse me its hard enough without a black rubber tube up your nose and then down the back of your throat to begin with .......but now your asking for miracles

BUT ............in order to check my voice box for cancer ( thats visible) I had to talk with this tube in, so off I went talking about the one thing I love the most , yep , working on Hogworts Castle ..............and just managed to do about 15-20 seconds worth before I wanted to heave again.

Next came the ' blow a trumpet ' face and then other strange faces and noises ...............yep, mascara still running down face and nose even brighter red than before still with my little freind inside my throat having a good look about .

And so the out come of all this is ?

I've now got to have an emergency test done which is something to do with drinking a fluorescent dye and being scanned at the same time he's ruled out any visible cancer or tears or lumps .............BUT and now this for me is the BUT.

When I told him about all those lumps I've had removed from all over my body , cant remember of hand how many but its about 16 or so , his eyebrows went up and he started to scribble like mad again.

The consultant is sure that there is a problem because of my voice changes and the way my throat reacted to something he did , but its something he cannot see on the outside , he's wondering if I have one of my special lumps growing from the inside of my body working its way to the surface by pushing the lining of my throat , which would account for me feeling that I can feel something , but he cannot see it .......as yet , clever man

So with now just 30 days until the big 'Hogworts Castle on the Hoe weekend' and I've just written my speech for the event the big question is 'Am I going to be able to read the thing or even talk ' ?????

Watch this space for answers after the next round of tests in 8 days time ............lucky me

I tell you one thing , at this rate I'll be as skinny as a bean pole by the time the newspapers and Tv get to cover the event , I've lost 16lbs in just under 4 weeks now and this evening I was unable to eat more than a couple of mouthfuls , not just because of the difficulties I'm having ...........but because I've now got a horrible sore and stinging throat from his little freind ' the nosey camera ' playing around with what feels like a wire brush on the end of it ....................mmmmmm, hubby could do with a new wire brush for cleaning the paintwork on the outside of the house before he paints it this year , I wonder if this new consultant would lend me his ............... bye for now all ...........take care ............and dont do anything I wouldnt do ....................well unless it makes you laugh trying . XXXXXXXXXXX Ami .

[corina]

thanks for the update ami!

i was thinking about you on the 22nd and hoped everything would go well. your doctors are in the right (high) gear to find out what is going on (especially with these lumps). i'm keeping my fingers crossed for you!

love,

corina