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MAC & Bronchiectasis | Last Active: Jan 19 10:15pm | Replies (9354)Comment receiving replies
Replies to "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..."
@katemn Katherine, I too had migraines since my teens, I realize in retrospect they started shortly after I started menstruating.
I had nadolol when I had cirrhosis because I had some slight esophageal varices. The nadalol made me so sick I had to get off of it. They told me that was at my own risk but I knew the varices were very small so I decided it was worth it. Of course one thing that happens when you have cirrhosis is that you become less tolerant of drugs. Due to Barrett's esophagus I was put on a PPI. It really bothered me. The doctor tried about 3 different ones but I ended going back to omeprazole (prilosec), it bothered me the least. This all happened prior to my cirrhosis diagnosis.
Now I take 40 mg of omeprazole a day to counteract some of the immunosuppressants and am not bothered in the least. Hopefully that dosage will get reduced at the one year mark. I have read that Alzheimer's can be associated with PPIs. "Proton Pump Inhibitors Linked to Dementia" http://www.medscape.com/viewarticle/858909. That is extremely scary to me, particularly since I have two other risk factors -- diabetes (thankfully mild with no meds), and a hearing loss.
I agree, the fewer drugs the better. I never in my life thought I would be where I am now, taking numerous drugs. I am happy just to be here though so that makes it tolerable.
I will email your info to my daughter. Maybe it will help her.
Thank you.
JK
@irene5 Irene, thank you for your response also.
I have heard that beta blockers help migraines, someone I knew "way back when" was taking them and magically their migraines disappeared!
I think she may be on an anti-depressant, she does have some other issues - long story there. I will mention this to her too.
I know my life was very controlled by them. I will always remember how my son, in early grade school, would try to keep his sister quiet and from bothering me when I had them. He would do anything to keep the peace with her. He is still that type of guy. He has gone from being very difficult in HS and college, to being very caring, back to his original persona.
JK
@contentandwell, JK .. re: editing .. I always read my posts before I hit send! Hugs! Katherine
In answer to the GERD question, I do not get that. I am trying to use no dairy and as little wheat product as necessary. I have stopped eating bread and cereal. Really miss the yogurt and ...ice cream! I am hoping that will help. I am going to to back to taking NAC. It is supposed to help clear and was recommended by one doctor so it is safe. I think when I used it before I did not take enough every day to help with my health. You are supposed to take one three times a day. I took one once a day. And it should take a few months to work.
Totally off this subject, but something I read , wrote in this group, but it got lost somewhere, when you take levoquin, which many of us do, you should eat something with it always. Also, we are told not to take antacid within 2 hours, but apparently we should not take anything within 2 hours. Even a daily vitamin can affect the levoquin. I did not know this before and i use levoquin probably twice a year. It is my go to for infection, while carefully watching for bad effects. so far, so good. anyway, just a tidbit of info.
Thank you for the response. Have a great day. Fondly, Mary Jo
@katemn, I always do too but somehow that one got by me. I must have gotten interrupted or something. My daughter is a writer and I used to proof read for her!
JK
You always help! Thank you. I get botox injections in the head every 3 months for migraines. Not even sure if it helps. Now to find a local practitioner. Terry
@maryjo2sell Mary Jo, I can totally relate to your situation and frustration. I was in your shoes for years and years, coughing and hacking up thick mucous on daily basis. It was driving my husband and myself crazy. I'm always very nervous about going to a big meeting or a movie theatre and having an uncontrollable fit of hacking. That was before I was diagnosed for bronchiectasis & MAC. Since I had had a lot of allergies, we thought treating my allergies would stop all this nonsense. So I went on a 5-year allergy shot treatment which did reduce my coughing tremendously. But the thick mucous remained stubbornly and has been making me wanting to clear my throat constantly (that led to me eventually catching MAC). So the irritation is still there every single day. But after my bronchiectasis & MAC diagnosis, my husband has learned from my pulmonary doctor and from his own Internet search that the effort to clear out the mucous is actually helping with my situation. If we keep suppressing the effort due to fear of embarrassment, the accumulated mucous in our lungs will be a hot bed to trap bacteria in. He is now very conscientious about reminding me to do my thing (coughing and hacking up my mucous, especially in the morning). Fortunately, after the allergy shot treatment, I don't have much need to cough and the throat clearing is no longer very loud. But the memory of nightmarish long years of feeling disgusted of myself is still fresh. I'm hoping you can find the Chinese products that will help you with your problem. But you need to remember, thinning the mucous may be OK. but if the products only serve to suppress your urge to cough up mucous, please think twice about using them because you absolutely do not want the mucous to remain in your lungs. MAC/MAI is nicknamed Lady Windermere Syndrome for a reason. This article explains it: https://well.blogs.nytimes.com/2013/06/07/think-like-a-doctor-a-cough-solved/?_r=0
When you first submit your post, there is a button that says something like manage your post. When you click on it, you have the option of editing your submitted post. But I think after you have closed the browser, that option goes away. When you go back to your previous post when you close and re-open the page, the button is no longer there. For me, if I don't remember to re-read my post, I will try to re-read it immediately after I have posted and use the button to edit it if I discover mistakes.
@katemn and @contentandwell Thanks to you both for sharing your stories of migraines - that is so helpful to realize that not every "medicine cocktail", if you will, will work for everyone. This points to the need to keep working with your medical professional and searching for the right combination of meds. Being proactive here is so vital! Teresa
Is there a way to edit things you have posted? I just noticed all the errors/typos in my last submission.
JK