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-   -   Desperately need help... (http://www.healthboards.com/boards/dysphagia/933287-desperately-need-help.html)

rockotaco 12-28-2012 03:10 PM

Desperately need help...
 
Hello,

I have been having swallowing difficulties for a year now. I was already underweight when the problem started, 115 pounds, and over the last year I have never been able to eat enough to get back above that weight. I am only 108 pounds now, and despite eating 2100 calories a day on average, my weight is dropping. It is a terrible struggle to get even this many calories in per day. When I swallow, I feel great pressure as the food goes down, as if everything is huge, and it feels as if the muscles in or around my throat contract or spasm shut when swallowing. Particles of food get stuck on the way down, sometimes causing me to cough them up. Barium swallow tests showed no problem (except a little food getting hung up...isn't any food getting hung up a bad thing?) so doctors have persisted in treating it as anxiety driven and psychological. Against my intuition I took antidepressants and anxiety medication, only to have things become terribly worse. Between these drugs and the bad experience with them, the dangerously low weight, and the inability to get any relief, the last year has left me too weak to even take care of myself, and over the last couple months have begun having serious cognitive issues. My dad had to quit his job to take care of me, and he is burned out. Recently my throat spasmed shut to where I could not even get my saliva down, and had to keep coughing it up. Liquids were backing up in the throat. We went to the ER for this, and were turned away because I was able to get half a cup of water down. I need help badly, and do not know where to get it. Does anyone out there know where I can go to get some help? Is there anywhere out there where one can go to get help eating and recover from this? To say I am desperate is an understatement, as it is getting to the point where I cannot function. As a side note, I do have an endoscopy scheduled. I had one before that showed only a little acid irritation. Sorry for the long post, thank you for reading.

glitterbot 01-08-2013 12:17 PM

Re: Desperately need help...
 
[QUOTE=rockotaco;5109822]Hello,

I have been having swallowing difficulties for a year now. I was already underweight when the problem started, 115 pounds, and over the last year I have never been able to eat enough to get back above that weight. I am only 108 pounds now, and despite eating 2100 calories a day on average, my weight is dropping. It is a terrible struggle to get even this many calories in per day. When I swallow, I feel great pressure as the food goes down, as if everything is huge, and it feels as if the muscles in or around my throat contract or spasm shut when swallowing. Particles of food get stuck on the way down, sometimes causing me to cough them up. Barium swallow tests showed no problem (except a little food getting hung up...isn't any food getting hung up a bad thing?) so doctors have persisted in treating it as anxiety driven and psychological. Against my intuition I took antidepressants and anxiety medication, only to have things become terribly worse. Between these drugs and the bad experience with them, the dangerously low weight, and the inability to get any relief, the last year has left me too weak to even take care of myself, and over the last couple months have begun having serious cognitive issues. My dad had to quit his job to take care of me, and he is burned out. Recently my throat spasmed shut to where I could not even get my saliva down, and had to keep coughing it up. Liquids were backing up in the throat. We went to the ER for this, and were turned away because I was able to get half a cup of water down. I need help badly, and do not know where to get it. Does anyone out there know where I can go to get some help? Is there anywhere out there where one can go to get help eating and recover from this? To say I am desperate is an understatement, as it is getting to the point where I cannot function. As a side note, I do have an endoscopy scheduled. I had one before that showed only a little acid irritation. Sorry for the long post, thank you for reading.[/QUOTE]

I'm sorry to hear that you're struggling like this. Have you been to a GI doctor? Have you had an endoscopy or manometry study? It's good that they did a barium swallow, but the other studies are helpful as well. I don't have any answers, but I wanted to reply to you and tell you that I can sympathize. Hopefully the endoscopy gives you some answers. Not being able to swallow is awful. :( I would recommend seeing a GI doctor if you haven't all ready.

InTheShelter 01-10-2013 02:17 PM

Re: Desperately need help...
 
I'm so sorry to hear about all of your struggles. It sounds terrible. I have had a lot of problems with severe dysphagia, but mine has all been at the lower part of my esophagus, so I can swallow initially, but food then gets stuck in my esophagus. So that's a little different than your case, so I don't know if I have any great advice.

What type of doctor have you been to? Gastroenterologists are good, but if you are having trouble with swallowing in your throat area, you might consider an otolaryngologist too. I have been to one for voice issues, but he was also interested in my swallowing problems, and they deal a lot with that specific region. *Especially* if you're having trouble with your throat spasming shut, I would *really* consider seeing an otolaryngologist (I also have laryngospasms, so I know how terrifying it is when your throat just suddenly closes. My otolaryngologist has been helpful for that too, though.).

Can you swallow liquids most of the time? If so, I highly recommend starting drinking nutritional drinks like Boost or Ensure - they can have up to 350 calories/8oz and can have a good amount of protein. I started drinking them before my last surgery because I was losing a lot of weight quickly and they were worried that I might be too weak for them to do surgery. My only word of advice is to try different flavours (chocolate is the only one I could handle) and if you're prone to a lot of nausea, to take some medicine before drinking them. When I did that, I was able to get them down much better, and stopped losing weight so quickly.

Who is prescribing your antidepressants and anxiety medicine? If it is just your GP or someone who doesn't specialize in that, I would seriously consider going to a psychiatrist. I've had some pretty severe negative reactions to antidepressants, and if you have problems with that, only having someone who knows the medications really well prescribe them might be helpful.

I'm not sure if any of these suggestions will be helpful, but I hope so. I'm so sorry that you're going through all of this and I hope that you're able to get some answers soon! When is your endoscopy? I hope that it is sooner rather than later...

sadgirl74 01-13-2013 04:32 PM

Re: Desperately need help...
 
prob. reflux with acid scarred esopohgus go to a diff. gi dr. asap

hopefloats36 01-30-2013 05:42 PM

Re: Desperately need help...
 
I had <a manometry study> for dysphagia done and it diagnosed weakened esophageal muscles, etc. You will need to go to a GI practice that has a specialist in this testing and diagnosis.
It's frightening when you can't swallow, or when food slows down and just sits there. I've experienced all this. I'd encourage you to increase yur caloric intake with the aready suggested Ensure drinks. Eat very small bites and CHEW well before swallowing. Eat smaller quantities, but more frequently. All that helps me. Best wishes.

aelise 02-20-2013 06:59 PM

Re: Desperately need help...
 
Another already suggested this but I agree with going to a gastroenterologist and getting an endoscopy. You could have scar tissue that is narrowing the esophagus, making it difficult to swallow. I'm not entirely sure how these things work but is it possible it's neurological? If so, you might want to see a neurologist! Also if they think it's psychosomatic you should definitely be evaluated by a psychiatrist. Stick to the specialists in each area, GPs are great but limited in many ways. If I've learned nothing else in my quest for good health, it's if you can't figure it out after one or two GP visits just go to the specialist instead.


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