Asthma Frustrations: Can anyone help?

[sensitivesoul8]

Hi,

I've been extremely frustrated with my asthma lately, and was wondering if anyone could help or relate.

I was diagnosed with asthma when I was 12, but it only came on as a cough in the winter, when I was exercising or when I was around cigarette smoke. My doctors gave me an Albuterol inhaler, but that was it and never followed up on it because they told me it was mild asthma.

However, once I hit my 20's, it started to get worse. I no longer only coughed, I had trouble breathing and had my first "breathing" attack when I was 22. Since then, I have gotten progressively worse and I am now almost 30 years old. I see one of the top Allergists in my area who says all of my allergies are mild, so shots aren't necessary. I have also gone through 3 Pulmonologists and am finally happy with the one I have now. I am currently on: Singulair, Advair 250, Pulmicort (neb) and Brovana (neb), Nasal Spray, and an Albuterol inhaler as needed. My attacks used to get worse around my period, so I'm now on birth control as well, and was also told I have acid reflux so I am taking Aciphex for that.

It seems as if I am on so much medicine, yet I still have severe attacks. In the past month, I have had 3 severe episodes, two which landed me in the ER. When I'm in the ER, they give me an IV of Solu-Medrol, more nebs (Albuterol and Atrovent) and sent me home with steroid pills. The other day when it happened, they sent me home with 50mg of Prednisone for 5 days. I followed up with my pulmonologist and she said that my "upper airways" are inflamed and that's where she hears wheezing, so the prednisone should help with that.

The prednisone seems to be helping a little but my upper chest still hurts. Is this common after a severe attack?

Also, after a severe attack, my voice tenRAB to become raspy and it sounRAB like I have laryngitis days after the attack. Does anyone else go through this after a severe attack?

My frustration lies in the fact that I'm on ALL of this medicine, yet I'm still having problems and my lung function tests aren't bad. It shows some bronchospasms, but I'm always told that the results aren't bad. I've been told my family and frienRAB that all other asthmatics take all of their medicine and can live their life without having asthma interfere with their lives and they don't have severe problems anymore. Is this true? How come this isn't happening with me? Why am I STILL having problems?

My Pulmonologist is also sending me to an ENT to check for vocal chord dysfunction (I was tested for that before but they said I don't have it, but I'm going again). But I also have Barret's Esophagus, along with acid reflux. Does anyone else have this and can that affect my asthma?

It seems as if I just keep getting referrals to more doctors and more doctors, yet no one ever seems to have a solution to make these attacks stop. I'm ok for awhile, and then I get slammed! It's just so frustrating since I'm doing everything possible to prevent this from happening.

Can anyone relate or help?

 

[MountainReader]

Your story mirrors mine very closely with the exception that I developed mine as an adult. I'm on most of your same meRAB plus a couple for allergies and immunotherapy and Xolair for possible allergic asthma.

I go through horrible flares of asthma. They are bad and last for months at a time, yet by the time I get my PFT's actually tested, they usually come back fairly normal.

I've found that I have very severe acid reflux diagnosed as LPR/GERD. It is "silent" in that I don't have any symptoms other than a chronic cough and lots of difficulty breathing. While I do have environmental triggers, such as the cold air, my worst culprit right now seems to be this "silent" acid attack. It took a life-threatening attack to finally get a pulmonologist who took it serious enough to do further testing. He sent me for an Esophagram and Modified Barium Swallow. Basically, they use a video x-ray and have you eat and drink things with barium. This allows them to watch what is happening within your body with these items. With the esophagram, there is a speech therapist who administers it. She watches the physical chewing and swallowing process for any abnormalities. The Modified Barium Swallow watches as it goes down your esophagus and into your stomach. They have you sitting, standing and lying on a table that tilts some to see what happens as your body moves around. The first time I had this test, they could see the acid coming up to my lungs and throat. The acid not only irritates the lungs, but can be aspirated as well.

Based on this I went back to my Gastroenterologist who worked with my Pulmonologist. I had already been on PPI's and ended up going from one to another taking them twice a day to find one that would work for me. During my worst, none of them totally helped, but they did help some. Prevacid Solutabs and Dexilant were my best. Eventually my breathing got so bad that I opted to have a Nissen Fundoplication. Through a Manometry and pH test, I'd found out that my lower esophageal sphincter wasn't working properly and closing like it should. The surgery wraps your stomach around your esophagus. When your stomach contracts, it is supposed to prevent the acid from coming up. After the surgery, I woke up without a cough and my asthma improved. I would do it again in a heartbeat.

That said, while my fundoplication is still in place, I'm still having asthma problems. Now, they have a new pH probe by Restech that is great for people like us. My ENT administered the test to me. Basically, they place the probe down your nose and place it just behind your uvula. This particular pH probe can measure acid in your airway, in a gaseous form, which the others can't. You wear it for 24 hours and it can measure how much acid is making it up that high to confirm if that is your problem. I'm assuming yours might come back positive since you report having hoarseness and throat problems. It might be worth asking about. This probe is different from all the other probes on the market. Basic pH probes are useful for GERD, but they only measure the acid in liquid form. You might want to research Restech to learn more about this one because it is new technology as of 2008.

You don't say what dosage of Aciphex you are on. Are you on it twice a day? Most people with LPR are only helped by use of PPI's twice a day. Also, sleeping on an incline is highly recommended. The best way to do this is to prop up your headboard about 6-8 inches.

I have tons more to say, but this is a long post. Let me know if you have further questions.

Good luck,
MountainReader

 

[janewhite1]

You are certainly not the only one with treatment resistant asthma.

I'm 30 years old. My asthma started abruptly last spring, and, while I'm certainly not as badly off as you, I'm taking every medicine I can tolerate and I still suffering, still not able to do a lot of things I used to love. And I also have good lung function test results, even when I'm feeling pretty lousy. Probably the worst part is watching all my frienRAB, including the ones with asthma, do the things we used to do together.

The acid reflux can definitely trigger asthma attacks. Since you are on Aciphex and still having problems, you might need a higher dose, or you might do better on another medicine. If that doesn't work, consider surgery on the LES, to stop the reflux. Also, Advair can trigger acid reflux. I can't have it for that reason--if I use it I get severe reflux and nausea 24/7.

It might be worth doing allergy shots if the allergies are triggering your asthma at all, even if your skin reactions aren't that large. Do antihistamines improve your lungs any?

Hoarseness, that definitely happens to me. I find that the inhaled steroiRAB mess with my voice quite a bit. Taking them with a spacer helps though.

And of course, we have AVOIDING TRIGGERS! Remind me to call the cleaning service again, the house HAS to get clean, and I can't do it myself. Do you cover your face when outside? Do you have a HEPA filter?

Finally, since you keep winding up in the hospital, get your IgE levels checked. If they are elevated, you'd probably be a candidate for Xolair.

And try not to stress too much. It sounRAB like you ARE doing everything right, sometimes it's just not enough.