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Old 11-15-2012, 09:14 PM   #16
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whyme61 HB User
Re: can't swallow liquids

Quote:
Originally Posted by sparklebelle View Post
I'm56 yrs old and for the past 8 weeks I have not been able to swallow liquids. I've always chewed my food into tiny bites and take forever to eat, but one day out of the blue I lost my ability to swallow liquids. It was like I forgot how. I could get small amounts down with a straw at first, then had to start buying frozen drinks and using a spoon to get it down. Now I have trouble with that and half of what I try to get down, dribbles out of my mouth. Just this past week I started having trouble with food. I seem to get a lot of thick saliva in my mouth when I try to eat so spit out more then i swallow. Last night I had three or four panic attacks because I felt like I couldn't even swallow my own saliva. I have seen a doctor who ordered a barium swallow. It came back normal, even though I only got about a quarter of the barium down me. Monday I go for a modified barium swallow. In the meantime my g.p. put me on an anxiety drug, chlonazepam, at a very low dose, 0.5 MG, once a day. This drug is doing nothing for me, so I'm upping the dose on my own. I've tried calling my doctor twice to ask about doing this, but he has not responded yet. And I'm at my wits end! I'm angry that he put me on this in the first place, before doing any tests to see if it is physical! But I'm desperate, which is why i started taking it. I have been thru a lot of stress over the past 2 yrs. In 2010 I lost my dad and a grandson. My youngest daughter left her abusive husband, and moved back home last oct, and since then her ex has sent us numerous death threats and we've had the police here more then a few times. My fear is that if this is mental, how do I fix it? I hate to say it, but I'd almost rather have something physical wrong with me, so a doctor could hopefully fix it, because I am at my wits end. This is consuming my life...I do not want to go out, all i want to do is sleep. The gastroenterologist who I saw, said it sounded more like a muscular or nerve thing...then he said I seemed to young to have MS or ALS...which, I looked into online and from what I read online, I'm not too young. I just want an answer, I'm tired of living in fear. If it is mental, I need a much stronger drug because I can't continue on like this! I read older blogs about people with similar problems, I'm hoping to hear back from some of them on how they're doing? By the way, I cannot afford to lose much weight, I'm 5'5" and weigh 109 lbs.

 
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Old 11-15-2012, 09:42 PM   #17
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whyme61 HB User
Re: can't swallow liquids

I sympathize with you. I have had this problem since I was 28 and now I am 61. I have learned to deal and live with it. I had all the test was to doctor to doctor. I finally had to see a psychiatrist when I was 33. I have been on several antideppresants. The only one that worked for me was Elavil 150mgs it takes away most of the fear. For me liquids are the worst because it's hard to control. I am okay with solid foods. I also take 30mgs of Paxil for the anxiety. Presently I am going off the Elavil because of constipation. The elavil also puts weight on you because of the sugar craving which is hard to control. For every upside is a downside. This condition came out of no where. The Doctors don't really understand it they only can control it with medicine. I will stay on the Paxil and maybe will switch to another. I started about 8 weeks ago coming off the Elavil. I have already lost 10 lbs. for the last 30 years I only weight 110 lbs. I had to go for a colonoscopy and I weighted in at 163lbs. I feel alot better coming down in weight not so bloated. I just wanted to let you know this condition does exist and you are not alone. I always thought there was no one else with this problem. Everytime you go to a new Doctor and you tell them this they look at you like your nuts. Pray and God will get you through this. God Bless

 
Old 01-05-2013, 04:52 PM   #18
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Join Date: Jan 2012
Location: Mascoutah, illinois, USA
Posts: 14
sparklebelle HB User
Re: can't swallow liquids

Quote:
Originally Posted by whyme61 View Post
I sympathize with you. I have had this problem since I was 28 and now I am 61. I have learned to deal and live with it. I had all the test was to doctor to doctor. I finally had to see a psychiatrist when I was 33. I have been on several antideppresants. The only one that worked for me was Elavil 150mgs it takes away most of the fear. For me liquids are the worst because it's hard to control. I am okay with solid foods. I also take 30mgs of Paxil for the anxiety. Presently I am going off the Elavil because of constipation. The elavil also puts weight on you because of the sugar craving which is hard to control. For every upside is a downside. This condition came out of no where. The Doctors don't really understand it they only can control it with medicine. I will stay on the Paxil and maybe will switch to another. I started about 8 weeks ago coming off the Elavil. I have already lost 10 lbs. for the last 30 years I only weight 110 lbs. I had to go for a colonoscopy and I weighted in at 163lbs. I feel alot better coming down in weight not so bloated. I just wanted to let you know this condition does exist and you are not alone. I always thought there was no one else with this problem. Everytime you go to a new Doctor and you tell them this they look at you like your nuts. Pray and God will get you through this. God Bless

 
Old 01-05-2013, 05:12 PM   #19
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Location: Mascoutah, illinois, USA
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sparklebelle HB User
Re: can't swallow liquids

Hi Dortopia, it's been a long time since I've been on this site. How are you doing with your swallowing? After numerous tests came back normal, I was sent to a psychiatrist. Btw, my g.p. thought my problem was mental right from the start. He even used some of the same words you did in a previous post, saying it was like I somehow got my "wires crossed" in my brain and forgot how to swallow. It's been about 15 months since this started and I still cannot swallow with the ease I did before. BUT, I am a lot better then I was. At my worst, my weight fell down to 102 lbs and I was not able to eat or drink anything. I was on IVs to be rehydrated a few times and told if I lost anymore weight that I might need a feeding tube. I wanted to roll over and die. I was hungry and thirsty all the time. The only time I was able to get anything down was if I was awakened in the middle of the night and then I was able to suck down 2 ensures. My poor husband would set an alarm and get up 3 times a night to bring me in 2 ensures each time. I had to get them down me before my brain woke up! When I finally started eating again, I had to force myself to get the food in me. It would take me an hour to eat a soft boiled egg, the egg would be ice cold by the time I finished it, but I knew I couldn't give up. The psychiatrist put me on a few meds, lorezepam and ativan, but I had to go off the lorezepam because i had a bleeding problem with it. I was then given zoloft in liquid form, which I can't take because you have to drink it all down right after you mix it with water. My doctor recently gave me the pill form, and even though he told me it's okay to crush the pill up (it's not the capsule, but the pill) I"m still afraid to do it. After I was able to eat again I didn't want to stop! I put on about 15 lbs since the start of my recovery because I always want to put food into my mouth because I fear that I may one day forget how to swallow again. I've learned to live with this, but i'm still no where normal. I can't eat most meats or the spicy foods I once loved, and when I drink I have to use a straw and I spill as much as I get in me. I have to take several sips and let them dribble back out, before i get up the courage to actually let a swallow go down! I get so frustrated but like I said, I'm so much better then I was last year, when I wanted to just give up and die. I believe in the power of prayer and I know without my faith I'd have given up. So I am grateful, but it also makes me sad to think that I may never be able to eat and drink the way I used to do. I hope and pray that you're better. Shelley

 
Old 01-05-2013, 05:42 PM   #20
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sparklebelle HB User
Re: can't swallow liquids

Hi whyme61! How are you doing? I haven't been on this site in a long time. I'm doing okay. Not normal like I used to be, but better. I was so sorry to read how long you have been dealing with this problem. It's just been over a year for me. I'm going to be 57 this May. I started having my swallowing problems a year ago this last Oct. My doctor told me right from the start that he thought it was mental, that I somehow got some wires crossed in my brain. He still ran all kinds of tests to rule out anything physical. I had a barium swallow, a modified barium swallow, an endoscopy, an ultrasound, a CT scan of my stomach. I was sent to an ENT specialist who inserted a tube with a camera attached to it down into my throat. I was sent to a speech therapist. After all tests came back normal, I was sent to a psychiatrist. I was put on lorezepam and ativan. I had to stop taking the lorezepam because it caused me to bleed easier. I quit taking the ativan because I just did not like the way it made me feel. Of all the specialists I saw, the ENT doctor was the first one who really took his time with me to explain to me that there was NO physical reason why I shouldn't be able to swallow, that everything was working as it should be. He said it was almost like I had an aversion to swallowing. He had me eat some applesauce and pudding in front of him and then he gave me tips on how to make it go down. This was the start of my recovery. By this time my weight was down to 102 lbs and my GP told me if I lost much more weight I might need a feeding tube. At my worst, I wanted to die. I found peace only when I slept. I was hungry and thirsty all the time. I felt tired and weak and just wanted to give up. The funny thing is, I was always able to drink in the middle of the night IF my husband woke me up from a deep sleep I was able to suck down liquids thru a straw. We got into a habit of him setting an alarm and waking me up three times a night, he'd bring me in 2 ensures each time and I'd drink them without any problem. So long as I got them down me before my brain was fully awake! Slowly but surely I added solids back into my diet. It would take me an hour to eat a soft boiled egg, but I knew I couldn't give up. My eating continued to improve. I gained 15 lbs over the year! Today I still can't eat most meats or certain textures of food, and when I drink I have to use a straw and I spill almost as much as I get down me. I have to take several sips and spill them back out of my mouth before I get the courage to finally let one go down. It's so frustrating, but I do not want to go back to where i was last year. My psychiatrist changed my med to zoloft, which I have not taken yet. Even though I was told it was okay to crush the pill up, I'm still afraid to do it. Hopefully I'll conquer this fear. I was going to a hypnotist who helped me, but our insurance did not cover his visits, so after several months of seeing him, I stopped going. My psychiatrist told me that he thinks this is just my way of letting my anxiety out. I was diagnosed with severe anxiety and he said that with some people their stress comes out in their back and they'll have backaches, with others it may come out in their chest or neck, with me, it comes out in my throat and makes me think I can't swallow. I long to be normal again...to be able to eat and drink anything I want at any time I want without even thinking about it. Gee, I took something for granted that I never imagined I'd lose! BUT..I have come a long way from where I was last year and I'm very thankful for this! Prayer definately helped get me to where I'm at today! Anyway, I would love to hear back from you and know how you're doing today. You're in my thoughts and prayers. Shelley

 
Old 01-06-2013, 10:51 PM   #21
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Dortopia HB User
Re: can't swallow liquids

Hi sparklebelle. It's been a long time since we've spoken here, and it's good to read an update from you.

These doctors can be so confusing. He said your problem is 'mental', while also saying you have wires crossed in your 'brain'. If it's mental, that's in the mind. If it's the brain, that's physical.

I was told the same stuff. They said I have a "bizarre anxiety disorder", and also that I'm crosswired and am inhaling liquids. No hypnosis was of any help, nor was any medication or speech therapy, so I did other kinds of work on this by myself, as I felt personally led to do so. I'm better now, have all my weight back, but will possibly never be totally normal again. Can't have a social life this way, and can't eat holiday dinners with my family.

Whereas you say you use a straw, I have to take sips from a spoon. That way, I can keep my head in the 'safe swallow' position the same way for every sip, and control the amount. It's always very small, but has proven to work well. I drink water directly from a thermal mug, though, and just work at it a very long time with very small sips. I puree most of my solids, and that has proven to work well, too.

I hope you continue to do better. It took me a number of years before I really started to get a handle on it for myself, and it was after I found out what I think were the main causes of this. Knowledge really is power.

Dor

 
Old 01-08-2013, 11:43 AM   #22
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sparklebelle HB User
Re: can't swallow liquids

Hi Dor! I was so happy to hear back from you. I am sorry to hear that you're still struggling with this darned problem that we have! It's just so frustrating! I get angry with MYSELF because I can't fix it and go back to what was once normal for me! I just re-read all the old posts we had here and I noticed where I posted that my husband used to bring me FIVE ensures thruout the night, and when I just left my last post to you, I said it was TWO ensures that he brought me. I had actually forgotten how bad it was until I went back thru our old posts here! My heart goes out to you because I know how exasperating and embarrassing this problem can be. We rarely go out to eat anymore, and when we do, it's usually to my favorite Korean restaurant. I know we can sit at a corner table there, in the back of the restaurant, where i don't have to worry about as many people seeing me spilling my soda all over the place. I always leave with stains on my top though! Sip sip sip sip...spit spit spit spit...until I finally get the courage to suck it down! At the start of this my husband would get so frustrated with me. He just couldn't understand why I couldn't swallow! And when the doctors said it wasn't physical, that it was mental, it frustrated him all the more, to the point where I think he would sometimes get angry with me for not just swallowing it down! Now he's used to it and never says a word about my dribbling and gulping noises. Like I said, it takes me several sips (with a straw) that I let fall back out of my mouth until i get the courage up to suck one down! When I do suck it down, i take four or five or as many immediate sips and swallows that I can get! I get stains all over our carpet, on my coats, my tops, anywhere I've been...my husband must have gotten tired of this (altho I do clean it up myself) but he told me to start standing over the kitchen sink when I drink anything so I won't get it all over the place. This made me mad, and I told him that I already feel weird enough in having to drink the way that I do, so I was not about to make it seem even more odd, by having to stand over the sink every time I drink something. I'm nervous about an upcoming trip to Dallas that I'll be making within the next few weeks. Our oldest daughter lives there and is due to have her third baby boy and she want's me to come over to spend a week with them after the baby is born. This is my daughter who lost her little baby boy in Nov 2010, so this baby is such a blessing! But this daughter is such a neat nick...I don't know how i'm going to be able to drink there? I guess I will have to follow my husbands advice and drink over the sink because I do not want to be spilling liquids all over her home! and i don't want her to hear me gulp the liquids down either. I don't know why I do this, I never used to drink with these loud annoying gulping sounds before? I already bought a case of flavored water to take with me and I'm thinking I'll have to get up in the wee hours of the morning, before her other boys get up for the day at six AM! I'll have to set an alarm and get up at about four thirty AM and try to suck down a few bottles of my water before anyone else is awake! I have to force myself to even make the trip. Since this swallowing mess began I've had a fear of leaving home for overnight trips. I get so darned stressed out over everything these days! I miss my care free "dancing my way thru life" days! I feel so bad for you, because it sounds like you have it a lot worse then I do. I make it a point to get seven to eight glasses of fluids in myself a day. With the most of it being drank in the middle of the night. That is the only time I can drink it without spilling any of it. I did find some humor in this hellish problem this past summer. I went to see my son in law compete in a tough mudda race. It started early in the morning and they had venders at the race selling soda and beer. I bought a beer, pulled out my straw (I take one everywhere i go because it's the only way i can drink) and put it into my beer and sucked it down! Then I had a second and a third beer and I felt so relaxed! Not to the point where I could drink the beer like a normal person, but it made me enjoy the day a lot more! It's rare that I drink, but at least I can get a few drinks in me if I want to. I'm beginning to care less and less of what others think about the way I look with my ever present straw and dribbling all over myself....I have to live my life in a way that brings me some happiness in spite of how i look while doing my drinking! I quit going to my hypnotist who helped me, because it just got to be too expensive, but he gave me a CD that he made and I listen to every night when I'm falling asleep. I don't even know that it's doing any good anymore, I think I listen to it out of habit more then anything else. I forget, did you say you're taking any meds now? I know you said that one made you gain weight and you went off it and was also on paxil? I've yet to start my zoloft. I may try it one day? You said that elavil helped you a lot but you put on weight with it, what kind of drug is it? I've never heard of it. Okay, I'm rambling, but I want you to know that I'm praying for you, for us both, to one day be able to eat and drink and swallow anything we want with ease! Take care and please keep in touch! Shelley

 
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