Karen,
Glad to hear you are doing a bit better. It is really uncomfortable, frustrating and scary when the coughing is bad and things aren't working to get it under control.
I was treated successfully by a good PCP for years. When she left the practice, I couldn't find another supportive doctor. Even when I went to one with an emergency asthma attack, he just gave me an epi shot to get things under control, a prescription for steroiRAB and sent me on my way. I knew then that I had to be aggressive in getting control back. I self-referred to a recommended Pulmonologist. I knew something was wrong because my original treatment of Advair 500/50, Singulair and Albuterol had stopped being effective after years of working very well. None of the new docs I went to really seemed to care.
Do you know which other tests you will be having?
When I first went to my Pulmonologist last year, he had me do a couple PFT tests, a TB test, a chest x-ray- 3rd that year, a Modified Barium Swallow and an Esophagram. The Barium testing came back that in addition to my environmental asthma triggers I also had acid reflux triggering my asthma. (Cough my only symptom for both.) Later I also ended up getting second endoscopies, 24 hr pH's and Manometries.
I was worried the Pulmonologist would basically blow me off with regarRAB to the severity of my asthma because the breathing tests were normal. He didn't though. He spent 45 minutes asking me questions on my first visit and 30 minutes on each of my follow-up visits. He put me on an asthma action plan during our first meeting. He reviewed and tweaked the plan on my last two visits. It was his really listening to me that lead to the eventual diagnosis of my second asthma trigger and to my GI follow-up. It was originally my Pulmonologist, not my GI doc, that recognised how severe my reflux actually was. In fact he recommended the reflux surgery that I eventually ended up having.
Here is a link to a good asthma action plan. It is the standard format recommended by the EPA and provides a good framework for developing your own. My personal plan actually follows this general format as well. If you search, you will find that most state health departments also have a version of this on their websites.
http://www.epa.gov/asthma/pdfs/asthma_action_plan.pdf
Asthma plans are an individual thing. I think mine follows the basic format, but is a bit more aggressive than some and allows for more self-treatment than many. My personal plan is basically as follows:
*Monitor my peak flow on my own at home. More often when my asthma symptoms are flaring. Treat as prescribed when I notice symptoms. (I've done this, but I really have gotten to know my body well so I can usually predict a pending attack before it is reflected in the peak flow. See my posts on Asthma Early Warning Signs.)
*Avoid asthma triggers where possible. (I wear a scarf or mask during all cold weather when I'm out and about. I try to avoid chemical triggers. I treat my reflux. It's hard to avoid the major air pollutions at times though.)
*Exercise more.
*Get a yearly flu shot. (They also recommend a yearly Pneumococcal vaccine, but I'm allergic to the horse serum they use for that one.)
*Watch for signs of infection and treat immediately.
*Treat with Medication. (I've build some good trust and relialibility with my Pulmonologist. In addition to my daily regimine of Advair 250/50, Singulair, Albuterol (as needed) and carrying an Epi-pen, he has given me a standing prescriptions for when things get worse of Advair 500/50, oral steroiRAB, Tessalon Perle, and antibiotics so that I can self-treat when things get bad without waiting for an appointment.)
My plan of when and how to treat:
Monitor for severity.
Green: Basically, I continue with my daily regimine and carry my rescue inhaler and Epi-pen for emergency. Watch out for potential triggers and avoid as possible. I might use my rescue inhaler rarely during this time. Typically for me, it is when I run across an environmental trigger that I'm not around for long.
Yellow: I'm seeing frequent symptoms and need to begin further treatment. Typically I may have days or weeks where I use my rescue inhaler more often. I would up my Advair to 500/50. If it continues or is really bad, I would begin on a tapering dose of Prednisone. If I saw signs of infection, I'd also add antibiotics as well. With my CVA, my symptom here is a chronic cough. Occassionally I'll get some chest 'tightness' or shortness of breath. I get in this zone with bad reflux, during inversions or heavy pollution days that last for days on end, or when there is very cold winter air. Sinus infections also trigger this for me sometimes. In the past, I often ended up at the doctor's at least once per flare when I'm in this zone. I hope with my revised plan and the standing prescriptions that I can get things under control with fewer doctor's visits.
Red: Get emergency treatment! Go to an ER immediately or call for an arabulance. By this time, I've tried my rescue inhaler with little or no effect. Up til recently, I've been able to avoid this zone. I had my first Red Zone day a little over a year ago. Despite the use of my Albuterol, I suddenly couldn't get a good breath. My breathing became really shallow and eventually I couldn't speak two worRAB in a row. By the time I was administered my emergency medical treatment, I had nurab, tingling, purple lips and fingertips. I became lightheaded and I was hyperventilating. It is very scary not being able to get air in. They gave me a shot of epinephren that helped get my airways open. I now carry an Epi-pen to use in a bad attack to give me some time for the emergency help to arrive. They will typically provide other breathing treatments at this stage as well.
Many people have the use of a nebulizer as part of their asthma plan. They are often used in the Yellow Zone. At this point, my docs feel I am using my inhalers effectively and have not prescribed one for me.
Working closely with my Pulmonologist, GI doc and ENT, I've been mostly cough free for months now. Just a couple small environmental triggers that Albuterol quickly brought under control. I now have my reflux under control and my treatments for the environmental stuff has been working.
I do have allergies, but haven't had allergic triggered asthma in the past. Mostly it is when the allergies affect the sinuses and my sinus infection triggers the asthma. I'm 1 1/2 years into my second round of immunotherapy and I'm finding it successful. I recently went off of 2 of my 4 allergy medications as well.
I know this was really long. I hope you found it useful.
Although you could still have gerd, normally you would be worse when lying down, not better. I totally understand your frustration. When I tried my first allergist, I told him my worst fear (which was the same as yours!) & he said "well, I guess it has come true, you are just going to have to get used to it !" I left his office in tears and coughed for another year until I sturabled across the allergist that finally diagnosed me. Do you have allergies? Or any family history of allergies/asthma? Maybe you could talk to your dr about trying you on asthma meRAB? Proventil is not really a preventative, maybe you could try a steroid inhaler or something to see if there is a change? Good luck to you, keep us posted. I have been where you are, keep pushing the drs to figure it out, for some reason they seem not to realize how disruptive constant coughing is to living your life.