Breathing trouble - test results

[dianaD]

Hi all,

I've had hyperadrenergic POTS for about a year and a half now, and some of the symptoms are improving, but I still have so much trouble breathing (it feels like I am breathing through a straw), and am hyperadrenergic. My neurologist wanted me to see another pulmonologist to be sure that the POTS isn't secondary to something weird with my breathing.

Well, we went to Tyler, Texas yesterday to see this (great) doctor! My lung capacity is reduced but he thinks it is because I have a small chest cavity. However, my ability to inhale and exhale (called "MIP" and "MEP") is reduced by about 50%. He said that can be from weak breathing muscles, but in my case is more likely damaged innervation to the muscle. This wouldn't be so much trouble to most people with normal lung capacity, but is very hard for me to accommodate.

Has anyone else shown reduced MIP's and MEP's? I got this from a virus, and I personally believe that this assault on my breathing is what started the entire cascade of POTS.

If you are having trouble breathing, be sure to ask them to check your MIP and MEP.

They've got me on a type of "pulmonary rehab" where I **** into this instrument in attempt to regenerate the nerves and make the muscle stronger, if possible.

Is anyone else dealing with this?

Thanks!

Diana

[biatecki]

Hi Diana,

My MIP MEPS were found to be reduced ..... one was 55 and the other 59 but I forget which was which! I believe normal for a woman my age, weight,etc would be 70- 100. I was told this was not a problem by both my respirologist and autonomic doc. Like you I had a post viral onset and have always had difficulty breathing esp when lying down.I too have been told I probably have damage to the nerves to my lungs but no one seems inclined to offer any further advice or concern.

Do you by any chance have some abnormalities around ventilation ? mine is only 56% of expected. I also have abnormal VEC02.No one seems to know what it all means or what to do about it!!

I believe you could probably improve the stength of your inspiratory muscles using the retrainer .. I have heard they do help ...but only time can regenerate the nerves.

Its always interesting to hear of others with the same problems. I do feel the impact of dysautonomia on the respiratory system is sadly neglected.There seems to be no research out there and so many of us experience SOB and chest pain...and are not tested for more than just basic pulmonary function.

Now I`m going to get myself an inspiratory muscle retrainer and join you in some exs!!

Best wishes ,

Margaret

[dianaD]

Hi Margaret,

I'm not sure what numbers you're referring to. Is VECO2 the diffusion number? If so, mine shows to be abnormal, but improving. My FVX1 is about 80% of predicted.

Have you had POTS for long? I've heard that after 2 years, improvement goes slower, so I'm hoping I can still improve my lung function. Exercise has helped my tachycardia, so I'm hoping that by working the breathing muscles, it will help stimulate the nerves somehow...

My husband found the inspiratory trainers for sale in a triathelete magazine, BTW, if you need it.

Are you hyperadrenergic, too? I'm starting on yet another beta-blocker (Toprol). So far so good (day 2).

Take care, keep breathing!

Diana

[Poohbear]

I don't have normal lung function either but I was told it could be in part deconditioning.

[biatecki]

Diana,

The 55cm H20 and 59 cm H2O are measures of inspiratory/expiratory muscle strength I guess this means centimeters of water, although I see that some use a measure of Kpa.. what ever that is ! Complicated isnt it . The VECo2 is a measure of anatomical or physiological dead space in the lungs..normal is about 30% (mine is 45%).

On to easier stuff ...Ive had dysautonomia due to an autoimmune autonomic neuropathy for 5 years now . I had 2 years of very severe symptoms and have slowly improved over the last 3 years . My catacholamine levels are normal so I think i`m not so much hyperadrenergic as experiencing a withdrawal of parasympathetic function which gives the sympathetic system free range. Beta Blockers always made me worse so I find Midodrine and Mestinon best to keep my heart rate down and my BP up. Enough for me to get by with only moderate symptoms anyway!

Margaret.

[dianaD]

Hi Margaret,

Thanks for letting me know! My inspiratory/expiratory percents were 64% and 42%, respectively. I don't see any numbers for VECo2 here, though.

I'm so glad that you are doing better now. Thank you for telling me what's going on. And I sincerely hope that your improvements continue.

Diana

[dianaD]

I have two words that I forbid my doctors to use. One is "stress" and the other is "deconditioned"!

I was told that my weakened breathing was consistant with deconditioning. But, I was always a big exerciser and had trouble breathing FIRST, before any autonomic functions surfaced. I know that the muscles can't be strong one day and weak the next for no reason. And I continue to do the recumbant bike religiously, because I was under the impression that if anything was going to help, exercise would. There were many days that that was all I was able to do all day, but I did it.

So, I am NOT deconditioned, yet my ability to inhale and exhale is extremely weak. It has felt like I was breathing through a small straw from day one. My pulmonologist presumes it is nerve damage to the muscles that help me breath. My husband says that I breath almost twice as fast as normal when I am asleep.

I really believe that a lot of us with shortness of breath have some decreased lung function that is going undiagnosed. I wish the docs would look into this more thoroughly.

Dr. Fealey at Mayo told me that some patients had to "learn to breathe again". But, he thought these people tended to hyperventilate, which is not my problem. I don't think he is completely understanding the problem, dog-gone it.

Maybe this is just a problem for those of us with POTS secondary to a virus?

Thanks to everyone for listening!

Diana

[Poohbear]

Just a comment on the term "deconditioning"...you really have to know what your Dr means or intends when they say this. My Dr. said it was "deconditioning" but acknowledged that it wasn't "my doing" in terms of lack of exercise. He said that regardless of the cause "deconditioned" is the term they use because that's how your lungs "present".

On the other hand, I've had Dr's who have used the term implying that it was "my fault" when clearly it is not. While I do believe in some people deconditioning can make things worse, I also know in my case, just like Diana describes it's not because I don't exercise or try to improve my condition with exercise.

[MightyMouse]

Diana, I don't know what to say other than that I hope they find a treatment that works for you. It's got to be awfully frightening to have times when you're just not able to breathe. The closest I can come to understanding personally is an asthma attack, but that goes away with treatment...

must also be frustrating for you.

From what I've been told, breathing is not purely and autonomic/automatic function. There is some level of conscious control--so perhaps that's the part that the doctor is talking about with regard to the "learning to breathe." ? Also, when I say conscious, it's still somewhat automatic, so it's not to say we go around every day thinking "breath now" every few seconds. The only reason I know about breathing is because after my father's heart surgeries, he had trouble being weaned from the ventilator because he was "forgetting" to breathe. He took longer than the average patient getting back to respirations on his own steam.

Nina

[calypso]

Hi Diana,

I think we compared breathing stories many moons ago, but just wanted to say I also am still having breathing problems. I just finally had some tests done a few weeks back, and was told everything looked very normal. The only part I had trouble with was when you take a giant breath in, then are supposed to blow out as hard and fast as you can, but sustain it for six seconds. My air was gone in three seconds the first few times, then I finally was able to hold out for six after about a half-dozen tries.

What is MIP and MEP?

I developed the breathing issues (and POTS) postpartum, and I do not believe I had any virus. So I don't think that's the only link to the breathing issues. I am curious as to how nerves in the lungs get damaged. Did your doctor shed any light on that? Since I didn't have a virus, I can't imagine how my lung nerves became damaged. But I do remember that one second I was fine, and the next I was short of breath and totally out of whack.

Amy