[juliejayne]

There are often comments here regarding breathing. Often mentioned that if your breathing is bad, you should go to the ER. However, if you have no experience then how do you know what is bad enough to warrant emergency care and what is not.

To that end, I have the following question;

When I wake in the morning my respiration rate (resps) is 36, or higher, and I can be gasping from the mouth.
After sitting up (nothing else) the resps fall to 24 (approx).
After taking my Mestinon (40mg) and waiting 20 mins, resps are at 12-14.

I am wondering if this is something to mention to my GP. Mestinon is only on a trial basis, so it is unlikely that I could get Timespan to see me through the night, but does anyone else recognise these sort of symptoms.

Hi, my main MG problem is my breathing.
I've never counted my resp rate by the way

there's a big difference between rushing to the ER, or telling your GP/neurologist about your problems! Always tell your doc about breathing problems. Maybe do some test especially focused on lung function (yes, let a pulmo do that).

Does it help sleeping differently? Maybe with some pillows? Lots of us have probs with sleeping flat on the back.

I have this for years and have breathing probs very often so that I know what to expect and where to wait and where to ask for help asap. You however, sound like you just started the MG route (?), so better safe than sorry and seek immediate help if you are having troubles, especially breathing problems. Especially in the beginning of the disease it can turn nasty fast.

Good luck

[AnnieB3]

JJ, The ER is an important place to be for newbies. They don't have treatment, yet, and might not know how severe breathing has become. Better safe than passed out on the floor, unable to breathe.

I don't do respirations, either. But I do have an oximeter, which helps me to know what my normal is and when it's worse. I can also just tell when breathing, swallowing, or moving are becoming worse.

A peak flow meter could also help gauge how you're doing, but it would only show how you're doing at breathing air out, not in.

Shortness of breath can be short-lived, continue for an hour, a few hours, etc. When poor breathing is persistent, and is getting worse over time, that's when you need help. In other words, when it's not improving, it's best to seek out help.

Sure that help can be in the form of a call to a PCP, a neuro (don't recommend that for breathing, but do inform them), a pulmonologist, or urgent care, but when things are getting worse without improvement, the ER is best.

You might also want to be evaluated for sleep apnea. They have machines whereby you can do that at home, instead of being near doctor or hospitals.

I hope you'll be evaluated soon!

Annie

[imdan]

Originally Posted by juliejayne

There are often comments here regarding breathing. Often mentioned that if your breathing is bad, you should go to the ER. However, if you have no experience then how do you know what is bad enough to warrant emergency care and what is not.

To that end, I have the following question;

When I wake in the morning my respiration rate (resps) is 36, or higher, and I can be gasping from the mouth.
After sitting up (nothing else) the resps fall to 24 (approx).
After taking my Mestinon (40mg) and waiting 20 mins, resps are at 12-14.

I am wondering if this is something to mention to my GP. Mestinon is only on a trial basis, so it is unlikely that I could get Timespan to see me through the night, but does anyone else recognise these sort of symptoms.

Just a couple of notes,

I waited too long to go to emergency room over my breathing because I also was not sure what was serious... caused perm damage to heart...

people go to emergency room for ticks, chigger bites, and smashed toes. so now to me, a breathing problem is more important of a concern....

[juliejayne]

Is the ER really going to help. In order to get there I have to be mobile and on meds. Then I have no breathing problem.

I will contact my GP, but she is so passive, I don't expect much, unless I can push her in a particular direction. To do that I need to know which direction to push her.

Will keep you updated.

[imdan]

Originally Posted by juliejayne

Is the ER really going to help. In order to get there I have to be mobile and on meds. Then I have no breathing problem.

I will contact my GP, but she is so passive, I don't expect much, unless I can push her in a particular direction. To do that I need to know which direction to push her.

Will keep you updated.

Simple answer is schedule a sleep study, you will spend the night in a controlled environment monitored all night....
hospitals, pulmonologists or GP can schedule that..
just dont procrastinate.... most likely can be scheduled in a day or two..

[juliejayne]

Well, passive as I said. Though she didn't want to refer me to anyone else. Suggested that getting up in the middle of the night (4 a.m.) to take another dose of Mestinon was a good idea.

Granted it worked. But is 4 hours sleep, then a break then 3 hours sleep a good way to proceed?

[suev]

For starters, I'd fire your GP and find another that is more receptive to your needs and concerns!

[AnnieB3]

I'd fire MG and be done with it.

Mestinon is a real problem at night for a lot of people. Bladder muscles get weaker when it wears off, and that's usually what wakes me up.

Waking up a few times at night does suck, but what's the alternative? Timespan is useful for some people, I suppose, but for others it's not enough of a dose and can be erratic.

Here's a direction: You need an overnight oximetry, at the least. A sleep study would be better.

Good grief. This lackadaisical care is getting to be a habit of physicians. Sorry, JJ.

Annie