Aa
Initially I was told I didn't have Asthma . . .
Healthy up until 4/2000 when I was hospitalized for an Asthma attack due to exposure to secondhand cigarette smoke. After being pumped full of drugs I flew like a kite but it really didn't help me. The doctor that released me in 2000 and again in 2004, not remembering 2000, said I I was "polluted/over saturated" and my body was fighting back and just needed to get "cleaned out". I made the mistake against my current doctors advice of going to National Jewish Hospital where things got worse when I was "pumped and dumped" and soon they just dropped me to fend for myself. Since I have been seeing various doctors and they all just want to treat me for asthma, more pump and dump and leave me.
My only real symptom is pressure and irritation at a spot below the larynx right above the collar bone. When I have a breathing attack my throat tightens, gets irritated, eyes water, nose runs, no tightness in the chest, and no phlegm until I cough for a long while. Then the second that I cough something up and it hits that spot in my throat the attack is instantly over. I am addicted to Prednisone, from the pump and dump, of which I can not find anywhere to get help to get off it. All the doctors I have seen make in my problem to deal with, which I know is a good portion of my problem now that it has compromised my immune system and my body isn't making the basic hormones or chemistry to fight off my now mild episodes. The cold, smoke, humidity, grass dust nor anything like that bothers me. But being under a great deal of stress does. My main trigger seems to be anxiety. When things happen that makes a normal person get "upset" or mild complications that use to never bother me, the throat gets tight, I get annoyed and that is the start of when I have breathing problems/an attack. I take Alprazolam for the anxiety that the Prednisone causes and sometimes that's all I need to make things go away. And it's so really strange how they just all go away as if I never had them.
I have been seeing a doctor for 8 years now, he says he's at whits end and has no idea where to go with this. I'm trying to wean off the Prednisone to get my body working on its own as it should. My hopes are that its natural chemistry will take care of most of the problem. I have read many threads here of people having violent coughing attacks and or something feels like it's caught in the spot where I have my problems and we're all treated for asthma. The asthma drugs do nothing for me. But that spot in my throat feels like someone has their hands wrapped around my throat and are pushing me down. Holding me back from being able to function properly. I am constantly tired, to the point of needing to sleep almost constantly. I can't focus, when I get below the Prednisone threshold (7.5mg/day) I get flu like symptoms and collapse. If I take a moderate dose of Prednisone, everything is good. I use to be able to function nicely and the more energy I expended the better I felt and the more energy I got. Now it's I just use up what I have and have to wait for more before I can move on. A good portion of my breathing problems is that I have become severely out of shape from all this and have to catch my breath as anyone would in this condition. I have the strangest reaction to pain killers and Lidocain (when have dentistry done). I feel normal if not better than. Not in a manic way, but no breathing or energy problems. I feel like it did before I got sick. I can perform as a normal human and more so sometimes. As it wears off I resume the condition that I am in now. When I get a cold or the flu, the breathing and the rest goes away and I really do not feel the ailment as "normal" people do. I have my own version of it and with it the lack of my everyday breathing problems. Once the bug is gone, I'm right back to this. Matter of fact I look forward to "getting sick".
In the past I have had Laryngeal Spasm attacks that only time, a cool head and breathing as deeply as I could for 20-30 minutes would get me through it. No inhalers or nebs or anything would help. Haven't had an attack in over a year, thank God. It is the most insanely scary thing in the world.
After the cold and flu season at the beginning of 2013 when I got my own versions of the bugs, I have been severely fatigued, no ambition, short of breath from breathing through a straw like opening in my tense throat. Basically I'm just really tired and don't care about anything anymore. This thing is so completely bizarre and no one can seem to help. I fear that the medical profession is so locked in their ways that looking out side the box has not been possible. Thus 13 years of this. Lately I have seen a couple of medical shows, Royal Pains, that covered a subject just about like this and hope that info from that can send me in a new direction. But I wanted to post here to get some feedback that might augment my efforts. I know that if I can get this current batch of maladies dealt with I just might have a stab a real life. With a little energy and ambition, I know I could rehab nicely. I have in the past.
Also if anyone knows of any doctors or ways to "forcefully" wean from Prednisone, that would help too. I have spent 9 years trying various ways of weaning and nothing has worked. Amazingly the makers of the drug have no clue what to do for people like me. One thing, if I am in a situation where I get a jolt of adrenalin, take a pain killer or have dental work done, I have no need for Prednisone until the additive/natural chemistry wears off. And if can be a simple phone call with good or bad news that sends me one way or another.
Any assistance will be greatly appreciated.
My only real symptom is pressure and irritation at a spot below the larynx right above the collar bone. When I have a breathing attack my throat tightens, gets irritated, eyes water, nose runs, no tightness in the chest, and no phlegm until I cough for a long while. Then the second that I cough something up and it hits that spot in my throat the attack is instantly over. I am addicted to Prednisone, from the pump and dump, of which I can not find anywhere to get help to get off it. All the doctors I have seen make in my problem to deal with, which I know is a good portion of my problem now that it has compromised my immune system and my body isn't making the basic hormones or chemistry to fight off my now mild episodes. The cold, smoke, humidity, grass dust nor anything like that bothers me. But being under a great deal of stress does. My main trigger seems to be anxiety. When things happen that makes a normal person get "upset" or mild complications that use to never bother me, the throat gets tight, I get annoyed and that is the start of when I have breathing problems/an attack. I take Alprazolam for the anxiety that the Prednisone causes and sometimes that's all I need to make things go away. And it's so really strange how they just all go away as if I never had them.
I have been seeing a doctor for 8 years now, he says he's at whits end and has no idea where to go with this. I'm trying to wean off the Prednisone to get my body working on its own as it should. My hopes are that its natural chemistry will take care of most of the problem. I have read many threads here of people having violent coughing attacks and or something feels like it's caught in the spot where I have my problems and we're all treated for asthma. The asthma drugs do nothing for me. But that spot in my throat feels like someone has their hands wrapped around my throat and are pushing me down. Holding me back from being able to function properly. I am constantly tired, to the point of needing to sleep almost constantly. I can't focus, when I get below the Prednisone threshold (7.5mg/day) I get flu like symptoms and collapse. If I take a moderate dose of Prednisone, everything is good. I use to be able to function nicely and the more energy I expended the better I felt and the more energy I got. Now it's I just use up what I have and have to wait for more before I can move on. A good portion of my breathing problems is that I have become severely out of shape from all this and have to catch my breath as anyone would in this condition. I have the strangest reaction to pain killers and Lidocain (when have dentistry done). I feel normal if not better than. Not in a manic way, but no breathing or energy problems. I feel like it did before I got sick. I can perform as a normal human and more so sometimes. As it wears off I resume the condition that I am in now. When I get a cold or the flu, the breathing and the rest goes away and I really do not feel the ailment as "normal" people do. I have my own version of it and with it the lack of my everyday breathing problems. Once the bug is gone, I'm right back to this. Matter of fact I look forward to "getting sick".
In the past I have had Laryngeal Spasm attacks that only time, a cool head and breathing as deeply as I could for 20-30 minutes would get me through it. No inhalers or nebs or anything would help. Haven't had an attack in over a year, thank God. It is the most insanely scary thing in the world.
After the cold and flu season at the beginning of 2013 when I got my own versions of the bugs, I have been severely fatigued, no ambition, short of breath from breathing through a straw like opening in my tense throat. Basically I'm just really tired and don't care about anything anymore. This thing is so completely bizarre and no one can seem to help. I fear that the medical profession is so locked in their ways that looking out side the box has not been possible. Thus 13 years of this. Lately I have seen a couple of medical shows, Royal Pains, that covered a subject just about like this and hope that info from that can send me in a new direction. But I wanted to post here to get some feedback that might augment my efforts. I know that if I can get this current batch of maladies dealt with I just might have a stab a real life. With a little energy and ambition, I know I could rehab nicely. I have in the past.
Also if anyone knows of any doctors or ways to "forcefully" wean from Prednisone, that would help too. I have spent 9 years trying various ways of weaning and nothing has worked. Amazingly the makers of the drug have no clue what to do for people like me. One thing, if I am in a situation where I get a jolt of adrenalin, take a pain killer or have dental work done, I have no need for Prednisone until the additive/natural chemistry wears off. And if can be a simple phone call with good or bad news that sends me one way or another.
Any assistance will be greatly appreciated.
Thank you for your reply. I was tested at NJH for the Colorado 28 (or whatever they call it) and nothing happened. They even kept me an additional 20 minutes to see if anything would develop. Nothing ever did. Unlike the poor strappin' ranch hand kid that went in before me like John Wayne and came out a whimpering puppy, he reacted so badly. It scared the heck out of me. But . . . I can mow lawns with a mulching mower that is dusty as all get out; mulch leaves, breathe smoke (except when it stings that spot in my throat - then as anyone would, start coughing) and I have no "asthma" reactions. The only thing that really gets close to a reaction is when I get "agitated". My throat gets tight and then it moves down to the top of my stomach and I have shortness of breath. Although I have taken Benedryl to help me sleep, at times I feel as if it is helping in other areas too. So . . . My current Pulmonologist is going with the NJH results. In his eyes they can do no wrong.
two things - 1) look into vocal chord dysfunction, 2) find a naturopathic doctor who is experienced in adrenal gland fatigue
1) I don't know a whole lot about this, just past over it in trying to figure out my own health issues - basically your vocal chord doesn't work properly and doesn't remain open like it should. A ENT doctor and a scope DURING symptoms would help diagnose it. The pain killers and lidocan could somehow be relaxing the vocal chords and allowing them to function properly for a short period of time hence the less symptoms.
2) When western medicine is unable to help you, there are other options and ways of thinking. I know this is hard to think of because of entire lives we are taught that western medicine is the only correct way and all other "medicine" is witchcraft. I fully disagree with this because I would probably be dead if I remained with western medicine or severly ill and on disability. I had a combination of stomach issues (severe nausea and cramps to where I lost 10 pounds and could not eat more than a mouthful most meals for 2 years, I was down to 80 pounds. I also apparently had "severe asthma" where meds were not helping at all, on pednisone, pills, 2 manitence meds and 2 different rescue inhalers -still ended up in doctor's office constantly.
I tested negative for the methacholine challenge ("Gold standard" for asthma), told by the pulmonologist that I don't have asthma and to stop using all the inhalers (he did leave me with a prescription for ventolin though) even though I still had symptoms daily and my peak flow WOULD drop during those times. He said he couldn't do anything. Same thing for the stomach issues and gastroenterlogist - lots of tests including a scope - only result was gastritis - sorry can't help you. Sorry, I CAN'T EAT and weigh nothing. Luckily this doctor told me to try an OTC herbal mix that "won't hurt to try" - guess what I was symptom free in 2 days ....
Found a naturopath and 6 months later I was much much better.. the culprit - a very severe allergic reaction to wheat and dairy (crumbs that are too small to see will cause me to get sick for 3 weeks). This allergy did NOT show up on my 4-5 different allergy tests that were completed 3 different times.
Now, I am not symptom free because it is almost impossible to stay after from wheat completely (crumbs on people's hands when I'm out places, mom who refuses to make the house wheat free, doggy kisses after treats containing wheat, hidden wheat in medications and vitamins/food/drinks/natural flavours etc). And guess what? The only time I get breathing problems is when I have consumed wheat in some form or another.
Keep researching and trying different doctors until you find one that will actually listen to you without judging. You know something is wrong and you WILL find the right person to help you.
I am more sensitive to my body than most (one of the only people at my chiro's office that can tell you the exact moment my alignment changes) and western medicine does not care at all about the biochemical individuality of each patient - it squeezes everyone into "normal", well guess what - there is no such thing as normal! You have to listen to your body, figure out what it likes and doesn't like to gain a working relationship - keep trucking!!
Let us know how things get on! (Sorry for the long post I just know exactly where you are because that was me a couple of years ago, it is a looooong road to recovery but just keep at it). good luck. :) :)
1) I don't know a whole lot about this, just past over it in trying to figure out my own health issues - basically your vocal chord doesn't work properly and doesn't remain open like it should. A ENT doctor and a scope DURING symptoms would help diagnose it. The pain killers and lidocan could somehow be relaxing the vocal chords and allowing them to function properly for a short period of time hence the less symptoms.
2) When western medicine is unable to help you, there are other options and ways of thinking. I know this is hard to think of because of entire lives we are taught that western medicine is the only correct way and all other "medicine" is witchcraft. I fully disagree with this because I would probably be dead if I remained with western medicine or severly ill and on disability. I had a combination of stomach issues (severe nausea and cramps to where I lost 10 pounds and could not eat more than a mouthful most meals for 2 years, I was down to 80 pounds. I also apparently had "severe asthma" where meds were not helping at all, on pednisone, pills, 2 manitence meds and 2 different rescue inhalers -still ended up in doctor's office constantly.
I tested negative for the methacholine challenge ("Gold standard" for asthma), told by the pulmonologist that I don't have asthma and to stop using all the inhalers (he did leave me with a prescription for ventolin though) even though I still had symptoms daily and my peak flow WOULD drop during those times. He said he couldn't do anything. Same thing for the stomach issues and gastroenterlogist - lots of tests including a scope - only result was gastritis - sorry can't help you. Sorry, I CAN'T EAT and weigh nothing. Luckily this doctor told me to try an OTC herbal mix that "won't hurt to try" - guess what I was symptom free in 2 days ....
Found a naturopath and 6 months later I was much much better.. the culprit - a very severe allergic reaction to wheat and dairy (crumbs that are too small to see will cause me to get sick for 3 weeks). This allergy did NOT show up on my 4-5 different allergy tests that were completed 3 different times.
Now, I am not symptom free because it is almost impossible to stay after from wheat completely (crumbs on people's hands when I'm out places, mom who refuses to make the house wheat free, doggy kisses after treats containing wheat, hidden wheat in medications and vitamins/food/drinks/natural flavours etc). And guess what? The only time I get breathing problems is when I have consumed wheat in some form or another.
Keep researching and trying different doctors until you find one that will actually listen to you without judging. You know something is wrong and you WILL find the right person to help you.
I am more sensitive to my body than most (one of the only people at my chiro's office that can tell you the exact moment my alignment changes) and western medicine does not care at all about the biochemical individuality of each patient - it squeezes everyone into "normal", well guess what - there is no such thing as normal! You have to listen to your body, figure out what it likes and doesn't like to gain a working relationship - keep trucking!!
Let us know how things get on! (Sorry for the long post I just know exactly where you are because that was me a couple of years ago, it is a looooong road to recovery but just keep at it). good luck. :) :)
MEDICAL PROFESSIONAL
Hi, understand your predicament. You can try from the other end. Consider allergy testing. Consult an allergy specialist. First he may do a blood IgE levels to see if they are raised. Next, he will do skin testing. This test is painless, in which a very small amount of certain allergens are pricked into the surface of your skin. If you have allergies, just a little swelling will occur where the allergen was introduced. Reactions occur within about 15 minutes. If needed more sensitive intradermal tests will be used in which a small amount of allergen is injected within the skin. Based on this he may plan for immunotherapy. Regards.
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