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Old 08-04-2002, 06:58 PM   #1
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Post breathing problems... info

im a 23 yeard old male.. for the last few years i ve been having a hard time catching my breath.. it feels like i cant quite get enough air in.. i can relate to the feeling of having to have to yawn all the time , although in my case the yawns are rearly proper, and most times my body stopts mid way through... initially this condition would show itself after nights out in smoky environments, but in the last 3 months the feeling is almost constant... i have had a couple of chest x-rays done, but they came out normal.. in tne next few weeks will see a pulmologist and a throat doctor... i have been given two different inhalators for astma, but they do not help, irritate my throat and leave me in a state where i cought up phlegm... from reading some of the posts here, it seems like i may not be alone...

i believe that our condition might be related to something called "vocal cord dysfunction"...

if anyone out there has any other ideas or information about similar symptoms, and possibly if they noticed that certain things seem to affect their condition (in my case i can NOT establish if food, environment, or other things contribute - the severity seems random) please dont hesitate to post here...

best
peter



[This message has been edited by moderator2 (edited 10-14-2002).]

 
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Old 08-23-2002, 02:37 PM   #2
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Dear Peter,
I wanted you to know that I believe you have helped to save my father's life. I was desperate a couple of weeks ago because my father had been to so many different kinds of doctors about his breathing problem. They basically all said it was all in his head. My father's health continued to decline drastically and his breathing did, too. I prayed that God would help us to find someone or something to help him. I got on the Internet and started searching the next day. I was led to this site and read your entry. I immediately KNEW VCD was exactly what my father had. I called my mom and gave her the toll free # so she could call and find out where he could go. She told me that she, too, had been praying for my dad. In fact, she had been on her hands and knees praying her heart out and she said Amen, stood up and I called her with the info about VCD!!!!

My dad has since gone to one of the recommended doctors and has been diagnosed with VCD with no doubts. His treatment is speech and breathing therapy and it IS WORKING!!! In just 2 wks, his breathing is almost normal.

I just had to tell you THANK YOU for taking the time to put the info about VCD. All of our family thanks you, too. Good luck to you as you try to continue to find out what is wrong with you.

[This message has been edited by moderator2 (edited 10-14-2002).]

 
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Old 10-13-2002, 01:19 PM   #3
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hello nanet

im glad that all this info helped your dad.. all the "thanks" here should really go not to me but the lady who is responsible for creating the website...

anyway, i was wondering if you could provide a bit more info on what symptoms your fater has/had? has he ever smoked? does he have any hurtburn (this is related to GERD which i have been diagnosed with)? how was VCD diagnosed in his case?? if they used a fiber optic camera, was is apparent right away that the vocal cord are closing up?? how is he now - had the treatment helped??

thanks in advance
peter


 
Old 10-13-2002, 01:29 PM   #4
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ohhhh.. a few more questions:

does your dad have any wheezing??
how well does he sleep at night??
has he had any sinus problems??
how long has it been going on for??


thanks again..

 
Old 10-13-2002, 02:12 PM   #5
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Hi Peter,

I've been making my rounds here at this board and zoning in on ones that sound similar to what I have called "alpha-1-antitrypsin deficiency". I'm always amazed at how little is posted about it. Please take a look at the topic here called "uggggg someone please help!!!!! " or "Hereditary Emphysema called Alpha-1",...I go into detail of what alpha-1 is. It may be helpful to you to narrow your search. It is an enzyme deficiency that destroys the lungs in young adults.


spiderqueen noreen

[This message has been edited by moderator2 (edited 10-14-2002).]
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Old 10-13-2002, 03:44 PM   #6
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thanks for your post spiderqueen_noreen...

i will get my doctor to test me for it (although i doubt that he will know what to even test for - will have to print info from the webpage).. from what i understand though, the problmes with breathing in alpha1 deficiency have to do with emphysema, which in turn would mean that one's pulmonary function tests would come out on the low side... i ve had PFT done, and i am within norm... is my reasoning correct or could someone be on the brink of ephysema and have PFTs within norm??

thanks
peter


[This message has been edited by moderator2 (edited 10-14-2002).]

 
Old 10-14-2002, 02:51 AM   #7
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Quote:
Originally posted by abcd12345:
could someone be on the brink of ephysema and have PFTs within norm??
The answer, darling, is YES YES YES!

The idea about this disease is since the damage it does to the lungs happens most pronouncedly in the advanced stages, you want to stop it before your lung numbers drop below normal. Normal, remember, is 80-120% of what you are theoretically supposed to do. 82% is reduced, but it's still, technically, "within normal limits".

[This message has been edited by wrin (edited 10-14-2002).]

 
Old 10-14-2002, 03:13 PM   #8
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Exactly,....for example due to my diagnosis of alpha-1, my siblings were tested. One brother was tested to have the same active phenotype as mine called "ZZ". He was 30 years old when tested and his PFT's FEV1 came out at 80%. I was 37 years old when given the PFT and my FEV1 came out at 28%. He has never had asthma and would more than likely never been tested for any sort of lung problem until around his 40's. A1AD kicks into overdrive and destroys the lungs at an alarming rate if the alpha patient either has smoked, been around harmful elements, or has had chest colds all their life. My brother never smoked, never worked in harmful elements, but had frequent chest colds. I smoked for 5 years less than a 1 pack a day, never worked in harmful elements, but also had frequent chest colds. Thus my A1AD worked faster than his. His lungs are deteriating slower than mine due to this fact. With the right knowlegdable pulmonary doctor and treatment, his lungs will more than likely never need a TX.

Hope this info helps as well.

yellowdaisies, purplepansies, and pinkpetunias,

noreen
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Old 11-07-2002, 10:47 AM   #9
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Hello Peter,
I'm sorry I'm just now answering your questions. I haven't had the time to get back on this site for quite a while now. To answer your questions:
1-My father smoked for probably 30 years but he quit over 20 years ago. He was diagnosed with early emphesema and that's what made him quit.
2-He says he doesn't have any heartburn but I do know from the website and from talking to the lady who created it (can't remember her name)that you could have GERD and not know it, which could cause the problems with VCD.
3-His symptoms were very similar to yours; he had trouble getting in enough air, he did wheeze quite a bit, he felt like something was blocking his airway. He went thru numerous doctors, just as you have. He was diagnosed with it being all in his head and given anti-anxiety meds and anti-depression meds. He was diagnosed with mild asthma and given inhalers. He kept telling the doctors he thought they should actually look down in his throat with something. His neck would constrict as he tried to breathe and talk. Also, it came on suddenly and got worse as he went to doctor after doctor with no relief. To make the diagnosis even more difficult, he would breathe completely normal when he was sleeping and he didn't have any trouble going to sleep. That's one of the reasons it seemed like it was all in his head.
4-VCD was diagnosed when he went to a Speech Pathologist (based on info from the lady who created the website) in Atlanta. She used the scope that went down in his throat and showed what his vocal cords were doing. My sister and mother were there and they said you could see exactly what his vocal cords were doing.....when they were supposed to be open, they were closed and vice versa. The speech pathologist had no doubts that he had VCD. She began speech therapy right away, including breathing techniques. He improved right away but then would quit doing his exercizes and it would slowly come back. She finally told him he needed Botox injections in his vocal cords. He's had a couple of those shots and now seems fine. He does start to have problems if he's under a great deal of stress. Its like he forgets the right way to breathe or something.

To answer the questions in your other email:
1-My dad doesn't wheeze now but he did when the VCD was going strong.
2-He sleeps fine at night.
3-I don't remember any sinus problems.
4-It had only been going on for about 5 weeks when I read your comment and got the help he needed.

One thing the website talks about is how people with VCD could also have had Spasmodic Dysphonia, which is where you have trouble talking. My father was diagnosed with that about 10 yrs ago and received Botox injections in his larynx for about a year. He hasn't had any problems with that for about 8 1/2 years now.

Let me know if you have any other questions. Hope these answers help.
-Nanet

 
Old 11-07-2002, 06:18 PM   #10
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I just want to say that if someone with VCD presents themselves to an emergency room or doctor's office drop-in with their symptoms, that vocal chord stridor heard differs HUGELY from an asthmatic wheeze, and is not easy to confuse.

It's toughest to make a diagnosis outside an episode.

 
Old 11-08-2002, 09:06 PM   #11
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thank you for your answers nanet..

peter

 
Old 12-21-2002, 01:11 PM   #12
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Hello Peter:
Sorry to read about your troubles, I am experiencing the same breathing problems which escalate after eating a meal whether it is a small meal or large. My doc has given me nexium as well along with motilium which does not seem to help. I am so frustrated not being able to catch a clear breath that I do not know where to turn to. Have you found anything that may have helped you? You further thoughts would be greatly appreciated. Thanks so much.
RK

 
Old 12-25-2002, 01:42 AM   #13
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rajk,

i tried nexium for two weeks, but do not want to continue with any stomach medication until i see a gastroenterologist... so far i have only had an UGI (which did show reflux).. i have an appointment in march (long wait here - im in toronto as well) and will ask for an endoscopy...

there are a few things which i find help me (or rather do not worsen the "breathlessness sensation"):
1) I avoid smokey environments
2) NEVER eat until im full.. i try to eat many times but very small meals.. this lowers the amount of burping that i have to do as well ..

best,
peter

P.S. in my original post i actually had a link to a website with a lot of info on VCD.. it was against the rules of the forum, and was taken out.. i recomend that you do a search for it on the internet..


 
Old 12-25-2002, 01:33 PM   #14
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Hello Peter:
Thanks for your reply, much appreciated. I will also get an appointment to see a specialist. Patient is what I will have to be. I am trying to eat less and skipping complex carbos so that I do not get really full. Helps, but not comfy. I also have slowness in passing motion, so that does not help either. I am frustrated as you can probably tell, and don't know what to do.
Anyway, Happy Holidays to you. I hope you will be able to enjoy the partying and have fun at Xmas and New Year. The best to you, Peter.
RK

 
Old 12-25-2002, 01:36 PM   #15
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P.S. I have looked up on VCD but don't understand how that would affect my digestion and breathing problems! Have you had your VCD tests done?
RK

 
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