← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
Discussion(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
Replies to "@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib,..."
Cila, I'm saddened to hear you are having so many problems. If I was you I wouldn't wait 4 wks to go back to the Dr, if you don't start feeling better in 1 week go back. Maybe you should see a pulmonary dr or infectious disease dr. Hope you get to feeling better soon. Praying for you.
Lisa @tutti
Does anyone know how I can change my email address to go to another file so I can read my Mayo connects at a later date?<br><br>
I can help you @cowboy1997.
1. Go to your Account Settings on Connect https://connect.mayoclinic.org/account
2. Scroll down to the section called "Login Information"
3. Change your email address.
4. Scroll to the bottom of the page, click SAVE PROFILE.
The last step is very important. You have to save profile to save the change of address.
Here's more info about How to Set your Notification Preferences http://mayocl.in/2coxXJN
Colleen
Is everything working for the iPad now?
Kay
Thank you Lisa for caring and for the prayer. Cila
@kaystrand the website works on all devices phone, tablets and computers. Were you having problems on the iPad? Please send me a private message or a note using this form if you're having tech issues https://connect.mayoclinic.org/contact-a-community-moderator/
Cila, I am so sorry all this is happening for you .. rough! I also have a hard time sleeping .. I don't know if it is because of all the meds I have been on .. side effects .. age or just what. For a while it worked to bite off 1/2 of an over the counter sleep med .. Unisom. Then that stopped working. I am scared to death of the prescription Ambien because of the potential for addiction if used long term.
In researching it .. good old google .. I read about using: two-400 mg Magnesium Capsules FROM TWINLAB. I tried just regular magnesium tabs from the drugstore .. didn't work. Ordered the actual capsules online .. TWINLAB plus the 1/2 Unisom .. AND lo and behold .. it REALLY helps me sleep. Does NOT knock me out for the night .. I still wake up several times a night .. BUT I can get to sleep .. get back to sleep when I wake up each time .. and wake up rested. I can ONLY speak for myself.. but I was very grateful to find a holistic .. healthy .. non prescription method for getting some rest. BUT now hear this .. prior to this I took TWO Fibercon tabs per day to maintain colon health. With the TwinLab calcium tabs .. you will have VERY loose stools .. but I feel this is a very small price to pay for my rest.
I am late getting back to you .. so I second all the good information below from Jill! Personally after trying various Gerds meds I have found that ONLY Aciphex works for me .. and unfortunately my insurance does not insure it well but I am willing to pay extra because it works for me. I only REALLY found help by raising the head of my bed by 5 inches.
An easy solution is: Home-it Adjustable Bed Risers or Furniture Riser bed lifts in Heights of 8, 5 or 3 Inches Heavy Duty Set of 4 bed riser
https://smile.amazon.com/Home--Adjustable-Risers-Furniture-Heights/dp/B00MH74S16/ref=sr_1_1?ie=UTF8&qid=1474566214&sr=8-1&keywords=dorm+bed+risers
Please let us know how you are doing! I am sending you a REALLY big hug .. a tough time for you! Katherine
Kathryn, what great ideas! I love your idea of watching a short comedy prior to going to bed .. frankly that would be good for the whole world! I also like to practice as I am going to sleep saying my "gratitudes" .. what I have been grateful for that day .. even if it is just that someone has smiled at me that day .. or that I saw a lovely cloud formation .. or that I had a fun memory of something. Whatever I could be grateful for that day!
Just on this trip I just took .. I met a woman who is in constant pain .. some kind of disease in her muscles and bones that causes never ending pain. Here she was trucking along with everyone else for 6-7 hours a day in 90 degree heat .. face dripping with sweat with the loveliest smile .. just unreal .. she might be at the end of the pack .. but by darn she was trucking along. I had such admiration for her .. never giving up .. always with the sweet smile and great attitude. Now THAT is something to aspire to! I will never forget it.
So Jill, I admire each and every one of our people on our Forum .. each trucking along doing their level best to cope .. finding different ways to deal with various issues ... sharing the methods they have found .. caring for each other. What more can we ask out of life than people caring for other people? I'm just glad we are all here! Hugs to all! Katherine
Kathryn, I don't know if it is just me .. the meds I take or just what .. but I also have night sweats. Prior to the MAC (I "finished" menopause at age 48) but still continued to ALWAYS have one hot flash per night. Then when I was on the antibiotics I had quite a few night flashes. They have returned periodically. It is kind of on and off .. so much so that I don't even think about it .. at night I just throw off the covers until I cool off .. at night we turn the heat low so that works,
I would mention it to your doctor .. but frankly I kind of think It is all part of our disease. Why don't others chime in. I can only speak from my own experience. Hugs! Katherine
Thanks Jill, I haven't seen the GI Dr. I have been taking Prevacid for a long time time now and my other Dr. just prescribe me Zantac. I already elevated my bed 5 inches. I'm having shortness of breath for almost 2 weeks now. My Pulmonary Dr. said is from acid reflux but I think is from my lungs. I'm schedule to have CT scan November. Don't really know what to do. Cila.