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Undiagnosed asthma
I am a 21 year old female. I have been suffering from asthma-like symptoms since about age 11, but have just had 2 visits to an asthma specialist due to the worsening impact it is having on my life. The doctor is not sure if what I have is indeed asthma.
The presentation of my symptoms are not exactly typical of asthma, but the triggers are very common. My PFTs are normal, and I sat at normally 99-100% O2 on room air. I do not wheeze. Instead, I get a tightness in my throat, post-nasal drip and a hoarse, bark-like cough when I am in contact with a trigger. My triggers are changes in humidity (too humid or too dry), changes in temperature (especially cold), smoke, high intensity exercise, aerosols, pollen and especially perfumes or anything with synthetic fragrances. The symptoms also worsen at night and I often have difficulty laying down to sleep. When I have an acute attack due to a trigger, I gasp air in and feel the need to force it out with that bark-like cough I described earlier. I also get post nasal drip. My lungs remain clear and my sats remain 99-100%, but my upper airway feels very tight. I have had blood drawn for allergy testing and it came back negative. This includes RAST test and IgE levels.
As far as medication goes, I had been on Singulair and Advair 100/50 with decent day-to-day control with the exception of when I am in contact with triggers. I do not have a rescue inhaler. Here's the catch to this--I do not have a rescue inhaler because it worsens my symptoms. I have tried albuterol both nebulized and in aerosol form and also Xopenex and have had a bad reaction. The second I inhale the medication, I feel as though someone knocked the wind out of me and I begin dry heaving. I get very nauseous, tachycardic and anxious for hours to come until the medication wears off. I also have the cough and it does not subside for several days after exposure. The asthma specialist suggested doing the Provocholine Challenge test, but I felt as though this might be dangerous for me due to reactions to the medications utilized in the procedure and declined. Consequently, Dr. bumped up my Advair to 250/50 and then to 500/50, which I am currently taking along with Singulair, Claritin and Naxonex. Out of all of the medications I have taken for my problem, Singulair and Benedryl seem to have the best effect. I see improvement in my day-to-day "unexposed" control, but I am still concerned with my acute attacks. It is impossible to prevent exposure to triggers and my cough and difficulty breathing is interfering greatly with my life. I am particularly nervous that some day I will be hospitalized for my problem.
I understand that my presentation is very unique. I am wondering if anyone has heard of similar presentation of symptoms and what the diagnosis was. I also understand that my reaction to albuterol-based medications is very unique. I am wondering if anyone has heard or met anyone with a similar reaction. I am wondering what it is and why I have that reaction.
Thank you for any information you can provide me with.
The presentation of my symptoms are not exactly typical of asthma, but the triggers are very common. My PFTs are normal, and I sat at normally 99-100% O2 on room air. I do not wheeze. Instead, I get a tightness in my throat, post-nasal drip and a hoarse, bark-like cough when I am in contact with a trigger. My triggers are changes in humidity (too humid or too dry), changes in temperature (especially cold), smoke, high intensity exercise, aerosols, pollen and especially perfumes or anything with synthetic fragrances. The symptoms also worsen at night and I often have difficulty laying down to sleep. When I have an acute attack due to a trigger, I gasp air in and feel the need to force it out with that bark-like cough I described earlier. I also get post nasal drip. My lungs remain clear and my sats remain 99-100%, but my upper airway feels very tight. I have had blood drawn for allergy testing and it came back negative. This includes RAST test and IgE levels.
As far as medication goes, I had been on Singulair and Advair 100/50 with decent day-to-day control with the exception of when I am in contact with triggers. I do not have a rescue inhaler. Here's the catch to this--I do not have a rescue inhaler because it worsens my symptoms. I have tried albuterol both nebulized and in aerosol form and also Xopenex and have had a bad reaction. The second I inhale the medication, I feel as though someone knocked the wind out of me and I begin dry heaving. I get very nauseous, tachycardic and anxious for hours to come until the medication wears off. I also have the cough and it does not subside for several days after exposure. The asthma specialist suggested doing the Provocholine Challenge test, but I felt as though this might be dangerous for me due to reactions to the medications utilized in the procedure and declined. Consequently, Dr. bumped up my Advair to 250/50 and then to 500/50, which I am currently taking along with Singulair, Claritin and Naxonex. Out of all of the medications I have taken for my problem, Singulair and Benedryl seem to have the best effect. I see improvement in my day-to-day "unexposed" control, but I am still concerned with my acute attacks. It is impossible to prevent exposure to triggers and my cough and difficulty breathing is interfering greatly with my life. I am particularly nervous that some day I will be hospitalized for my problem.
I understand that my presentation is very unique. I am wondering if anyone has heard of similar presentation of symptoms and what the diagnosis was. I also understand that my reaction to albuterol-based medications is very unique. I am wondering if anyone has heard or met anyone with a similar reaction. I am wondering what it is and why I have that reaction.
Thank you for any information you can provide me with.
Guinea pigs rock! Just think of everything our providers are learning from us... Too bad we have to be the ones to suffer from it though. I will ask about cromolyn, though I am not much of a fan of it and see what he says...
Update: I am now on day 3 of hyoscamine and it is AWESOME! I am not a fan of this whole dry mouth/dry bladder thing, but it has cut back my nausea, cramping, bloating AND coughing/spasms. I have not been coughing at all at night and can actually lay down to relax! I definitely see what you mean about the side effects though.. definitely going to continue with the Miralax and many liquids until I get some regularity.
Update: I am now on day 3 of hyoscamine and it is AWESOME! I am not a fan of this whole dry mouth/dry bladder thing, but it has cut back my nausea, cramping, bloating AND coughing/spasms. I have not been coughing at all at night and can actually lay down to relax! I definitely see what you mean about the side effects though.. definitely going to continue with the Miralax and many liquids until I get some regularity.
Hello Again,
I just remembered another older bronchodilater, cromolyn. It isn't nearly as effective as albuterol, and must be used every 4 hours, but talk to your dr about it. I have heard of someone getting it in the hospital recently.
I just remembered another older bronchodilater, cromolyn. It isn't nearly as effective as albuterol, and must be used every 4 hours, but talk to your dr about it. I have heard of someone getting it in the hospital recently.
I am so glad you were helped by what I contributed. I only share what I have learned, and as you can tell, I have been a bit of a guinea pig as well. As a result, I have some different ideas.
I read back through my response and realized I had not mentioned Atrovent. Atrovent is another bronchodilater that is used for fast relief. Again, it is mostly used for COPD, but it does help some asthma patients as well. Unfortunately, with the discontinuation of CFC inhalers, atrovent inhalers are being pulled from the market. They haven't been able to make it work with the HFA propellant. It will continue to be available in nebulizer solution though as well as nasal sprays.
I understand giving your dr fits. I do that to my allergist and ENT all the time, which is disconcerting (my allergist more so than my ENT). My allergist is an assist prof at our med school and a researcher. She lectures across the country and some internationally, but mainly Mexico. She has multiple publications. My ENT just tells me I am difficult or an enigma. At least my allergist does research for new treatments for me.
The hyoscyamine thing is interesting. The other woman I mentioned was already on it for IBS when I suggested it to her. I am very glad you are getting some relief from your cough with that. However, be sure to eat plenty of fiber and drink LOTS of water. It slows down digestion and can cause constipation.
Take care.
I read back through my response and realized I had not mentioned Atrovent. Atrovent is another bronchodilater that is used for fast relief. Again, it is mostly used for COPD, but it does help some asthma patients as well. Unfortunately, with the discontinuation of CFC inhalers, atrovent inhalers are being pulled from the market. They haven't been able to make it work with the HFA propellant. It will continue to be available in nebulizer solution though as well as nasal sprays.
I understand giving your dr fits. I do that to my allergist and ENT all the time, which is disconcerting (my allergist more so than my ENT). My allergist is an assist prof at our med school and a researcher. She lectures across the country and some internationally, but mainly Mexico. She has multiple publications. My ENT just tells me I am difficult or an enigma. At least my allergist does research for new treatments for me.
The hyoscyamine thing is interesting. The other woman I mentioned was already on it for IBS when I suggested it to her. I am very glad you are getting some relief from your cough with that. However, be sure to eat plenty of fiber and drink LOTS of water. It slows down digestion and can cause constipation.
Take care.
Thank you everyone for your help.
That was a very helpful answer you provided me with. It is funny that you mentioned hyoscamine. Ironically enough, Thurs. I was diagnosed with IBS-C and have been put on hyoscamine. Since it works on muscarinic receptors, I was wondering if it would have any help with my asthma problems. Thank you for informing me that it indeed does! I would like to look up more information on that. Yesterday was my first day with the med, and I have actually noticed that my cough at night was significantly reduced. I am going to bring this up with my pulmonologist at my next apt. and see what he says about it.
As far as allergy testing goes, I completely agree that more extensive testing such as scratch test and intradermal. Unfortunately, I cannot afford that at this point, but I plan to see an allergist and ENT once I get my own health insurance in a year or 2. Vocal cord dysfunction is very interesting. I haven't heard of that until my pulm brought it up. I wonder if those with vocal cord dysfunction would get relief from hyoscamine too considering it is an antispasmodic...
Thank you for mentioning some new drugs to try. I am mostly concerned about what they will want to do wtih me in an acute attack since albuterol is a no-no. Working in the ER, I have noticed that nebulized epi seems to work very well, but that is more of a last resort thing. Another drug is prednisone, which my pulm sort of hinted might be the next step, but I am not really up for being on long-term steroids.
Another thing he might want to do with me in substitution for the methocholine challenge test is to exercise me, though that is not as sensitive of a test. I think I am driving him nuts by not giving him his test.. lol. I will also ask him about Foradil and see if maybe it would give me a better outcome.
Also very interesting about caffeine. I wasn't aware it was among the theophylines. So far this morning I had hyoscamine and a cup of coffee and I have not started coughing though it is very damp outside.. I took my Singulair last night, too. I will take my Advair and see how I am throughout the day and see if that treatment helps. I am going to stop taking the Claritin and Nasonex since they didn't really help anyway and because they interact with hyoscamine. Hopefully this treatment will work!! Thank you for your suggestions!! You are a huge help!
That was a very helpful answer you provided me with. It is funny that you mentioned hyoscamine. Ironically enough, Thurs. I was diagnosed with IBS-C and have been put on hyoscamine. Since it works on muscarinic receptors, I was wondering if it would have any help with my asthma problems. Thank you for informing me that it indeed does! I would like to look up more information on that. Yesterday was my first day with the med, and I have actually noticed that my cough at night was significantly reduced. I am going to bring this up with my pulmonologist at my next apt. and see what he says about it.
As far as allergy testing goes, I completely agree that more extensive testing such as scratch test and intradermal. Unfortunately, I cannot afford that at this point, but I plan to see an allergist and ENT once I get my own health insurance in a year or 2. Vocal cord dysfunction is very interesting. I haven't heard of that until my pulm brought it up. I wonder if those with vocal cord dysfunction would get relief from hyoscamine too considering it is an antispasmodic...
Thank you for mentioning some new drugs to try. I am mostly concerned about what they will want to do wtih me in an acute attack since albuterol is a no-no. Working in the ER, I have noticed that nebulized epi seems to work very well, but that is more of a last resort thing. Another drug is prednisone, which my pulm sort of hinted might be the next step, but I am not really up for being on long-term steroids.
Another thing he might want to do with me in substitution for the methocholine challenge test is to exercise me, though that is not as sensitive of a test. I think I am driving him nuts by not giving him his test.. lol. I will also ask him about Foradil and see if maybe it would give me a better outcome.
Also very interesting about caffeine. I wasn't aware it was among the theophylines. So far this morning I had hyoscamine and a cup of coffee and I have not started coughing though it is very damp outside.. I took my Singulair last night, too. I will take my Advair and see how I am throughout the day and see if that treatment helps. I am going to stop taking the Claritin and Nasonex since they didn't really help anyway and because they interact with hyoscamine. Hopefully this treatment will work!! Thank you for your suggestions!! You are a huge help!
Many people have had bad reactiond to powdered Foradil, but it works very quickly - almost as quickly as albuterol sulfate. You might want to try this some day when you don't have an attack and see if there is any sort of adverse reaction.
I have used it and never had a problem.
The PDR specifically states it is NOT to be used as a rescue inhaler, but it does work quickly and effectively.
I have used it and never had a problem.
The PDR specifically states it is NOT to be used as a rescue inhaler, but it does work quickly and effectively.
You should probably do the methacholine challenge test to see if there is any asthma present ... the risk of getting a serious reaction is very small. You could also look into vocal chord dysfunction and see if that fits as well, it can present very similar to asthma and many doctors don't know about it.
I had very mild reactions when looking at my blood tests (RAST) but severe reactions to the same allergen on a skin ***** test. Comparing my symptoms to exposure, I am defintely strongly allergic to cats and moderate to dust mites even though my RAST results showed very very mild (barely labelled as an allergy) and no reaction to dust mites at all. Since allergy medication works I would label it as allergies.
I had very mild reactions when looking at my blood tests (RAST) but severe reactions to the same allergen on a skin ***** test. Comparing my symptoms to exposure, I am defintely strongly allergic to cats and moderate to dust mites even though my RAST results showed very very mild (barely labelled as an allergy) and no reaction to dust mites at all. Since allergy medication works I would label it as allergies.
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The methacholine challenge would give you a definitive answer as to whether you have asthma or not. It sounds like your dr feels the risk is low, or he/she wouldn't have suggested it. However, you are the one that has to put up with the reaction to the albuterol if it is needed. Does your dr have a clear understanding of your reactions to albuterol.
She also suggested vocal cord dysfunction (VCD). That is a spasm of the vocal cords and can only be diagnosed by an ENT doing an endoscope exam. The problem with the exam is that unless your vocal cords spasm during the exam so that the dr can see the spasm, the test will be negative. It is a good posibility though. Here is a link to a breathing exercise you can try. http://www.webmd.com/video/vocal-cord-dysfunction-asthma If the exercise helps, you should talk to your dr about speech therapy with someone who has been trained in VCD techniques.
Since you are already on Advair, your dr may not want to double up LABAs (long acting beta2 agonists or long acting broncho dilaters). You could still talk to your dr about the Foradil though. The powdered form would probably be best for you.
I initially thought to suggest one of the powdered rescue inhaler, but then I remembered that you reacted to the neb solution as well. That wouldn't help anything.
There are other broncho dilater options. Spiriva is usually used for COPD patients, but I have heard of it being used to treat some asthma patients. It is an anticholinergic, a totally different class of medicine than albuterol. Since albuterol is not for you, that might be another option. Also, theophyline is another bronchodilater. It has some serious side effects and blood levels will be monitored carefully. It does work well. Caffiene is the the theophyline class of medicines. It can have a mile affect as a bronchodilater. So drinking some hot cafeinated tea or coffee might help relieve some of your symptoms.
Another thing my GP used on me to get me through to seeing the allergist is hyoscyamine. That is a smooth muscle relaxer that is typically used for IBS. It stops broncho spasms. I know of one other person that could not take albuterol. It actually paralized her. Hyoscyamine helped her.
I hope that gives you some treatment options.