1. < MAC & Bronchiectasis

I have MAC, multiple fungi and now I'm dizzy. What to do?

Posted by lostinkc @lostinkc, Oct 5 2:42pm

I have been diagnosed with MAC and cultures have shown more than 1 kind of fungi. I am unable to fight off fungi for some reason. My otherwise healthy Dad died from fungus colonizing his body and I seem to be heading in the same direction.
I am going to National Jewish Hospital in Denver at the end of October. I'm trying to put together a local team at a different hospital system than the one I started with in Kansas City because they were continually problematic. The idea is to have the local team to supervise my progress on the plan that National Jewish comes up with. The doctor at Mayo did pre-testing for NJ so that I will be further along in diagnostics when I get to Denver.
Here's my question, I was wheezing on the 7% saline so I didn't use the nebulizer for a week. I got .9% saline and just started mixing it and nebulizing, but now I'm dizzy. Has anyone else has this problem with nebulizing? I haven't been dizzy before, but maybe I was breathing wrong? It's been an hour or so I I'm still kind of shaky and a little dizzy.
If this is not unusual with nebulizing then I will not worry, but if this doesn't sound right then I may have to go to emergency because I don't have a doctor yet in KC.
I know this is a lot, but I don't have another resource yet and I don't want to end up with collapsed lungs and fungus in my brain putting me in a coma.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

lilianna | @lilianna | Oct 6 8:19am

I have been using sodium chloride for over a year and have not experienced dizziness. I do my treatments in the morning before breakfast and I am sweaty and weak. Did you try eat first and first of all drink at least one full glass of water then wait 1-2 hours and then nebulize. It’s just a thought unless you are dizzy from something else. Did you check your blood pressure and oxidation before nebulizing. You might check oxidation during nebulizing too. There are so many factors with our illness. I understand you really well. Hopefully you will solve the problem

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 6 9:29am

@lostinkc - Nebulizing can make you dizzy if you don't try to breathe normally while you do it. Maybe try this - if it begins to happen, turn off the nebulizer and sit and breathe quietly for a minute or two before you resume. Another technique to try - every other breath - like this -
1. Inhale the nebulized saline and hold in your lungs.
2. Remove the mouthpiece from your and exhale fully.
3. Take one normal breath and exhale.
4. Repeat.

I hope one of these will help. If you are wonder whether to go to the ER, call either your old doctor or NJH for advice. It is not usually a good place to go with a complex problem like yours, as they often feel the need to "start over" on your whole assessment, or just give you some oxygen and say "see your provider as soon as possible."

REPLY
1 reply
lostinkc | @lostinkc | Oct 6 9:51am
In reply to @sueinmn "@lostinkc - Nebulizing can make you dizzy if you don't try to breathe normally while you..." + (show)
@sueinmn

@lostinkc - Nebulizing can make you dizzy if you don't try to breathe normally while you do it. Maybe try this - if it begins to happen, turn off the nebulizer and sit and breathe quietly for a minute or two before you resume. Another technique to try - every other breath - like this -
1. Inhale the nebulized saline and hold in your lungs.
2. Remove the mouthpiece from your and exhale fully.
3. Take one normal breath and exhale.
4. Repeat.

I hope one of these will help. If you are wonder whether to go to the ER, call either your old doctor or NJH for advice. It is not usually a good place to go with a complex problem like yours, as they often feel the need to "start over" on your whole assessment, or just give you some oxygen and say "see your provider as soon as possible."

Jump to this post

Thank you so much. I will try this. I keep telling myself I just have to make it to the end of the month to my appointment at NJH.

REPLY
lostinkc | @lostinkc | Oct 6 9:55am
In reply to @lilianna "I have been using sodium chloride for over a year and have not experienced dizziness. I..." + (show)
@lilianna

I have been using sodium chloride for over a year and have not experienced dizziness. I do my treatments in the morning before breakfast and I am sweaty and weak. Did you try eat first and first of all drink at least one full glass of water then wait 1-2 hours and then nebulize. It’s just a thought unless you are dizzy from something else. Did you check your blood pressure and oxidation before nebulizing. You might check oxidation during nebulizing too. There are so many factors with our illness. I understand you really well. Hopefully you will solve the problem

Jump to this post

I will put my pulse oximeter next to the nebulizer and check if the dizziness comes back today.

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laborday24 | @laborday24 | Oct 6 6:55pm

Hey how are people doing on arikcase

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Rick | @rstel7272 | Oct 7 7:20am

I've had severe dizziness multiple times. Each can be attributed to amikacin, arikayce and the last episode from a statin for my cholesterol.

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laborday24 | @laborday24 | Oct 8 11:06am

Does everyone get put on arykace

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lostinkc | @lostinkc | Oct 17 1:23pm

I make sure that I breathe normally a couple of times in between nebulizing and huff coughing and that has helped a lot. I also give myself more time between using the albuterol and nebulizing. I'm still not coughing anything up. This has been a problem all along, the gunk does not come up. Is the wheezing a sign that I am doing damage? Should I just wait until I get to National Jewish at the end of October? I'm trying to be proactive, but I just seem to be getting more and more sick.

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