air hunger

I have a neuromuscular disease ( mitochondrial myopathy) which has affected my respiratory muscles verified by pft's.My MVV is 31%- my pulmonologist says it should be at least 70-80%. My pft's also revealed a restrictive process. As a a result of the NMD,I have air hunger(my pulmo. told me when describing these episodes that it was air hunger and this was common in NMD.) Is there anything I can do when I have air hunger? It is so frightening. I try not to panic which would only make it worse but I don't know what to do.It feels like I can't get a good breath in -like it stops halfway . Sometimes it goes on for a while.I don't visibly look dyspneic with these episodes. It is very scary. Any suggestions would be appreciated.
Thank you for a great site!

[National Jewish]

A variety of breathing problems can result in "air hunger".  In the past oral and injectable narcotics and tranquilizers have been used to relieve this scary sensation.  More recently, inhaled medicines have been used for this purpose with some success, including morphine and another narcotic called Fentanyl.  Fentanyl is also available as a skin patch for the treatment of chronic pain.  I could find no reports of this medicine being used as a patch for air hunger.  However theoretically it might work.

The danger with any of these medicines is that they can suppress breathing.  Therefore, the doses given would have to be carefully prescribed and monitored by your pulmonologist.

[LLRT]

Bipap can help you obtain that deeper breath you are looking for. We use it often on patients with NMD's. You may not be a candidate for it yet depending on your situation, but look into it. Bipap is Bilevel Positive Airway Pressure. This is a machine attached to a high pressure mask that you strap on tightly to your face. When you take a breath in, it gives a "boost" of support to "assist" you in taking a bigger breath to get more volume. Alot of NMD patients often will wear it at night when their respiratory muscles get very weak. Hope this helps.

[grace77]

My former pulmo did order a bipap for me last year but I had a terrible time with it and could not keep it on longer than 2 hrs at a time.My new pulmo. is aware I have the bipap but has not made it mandatory to wear it. I wish I could wear it more easily because it did help some.

[myproblem]

I have no solutions for you but I can really sympathize. I have Restrictive Lung Disease, and what you describe is exactly how I feel. My town has only one pulmonologist though, and he was a complete jerk to me. He acted like I was some kind of a hypochondriac, and told me that the diagnosis I'd received from the hospital, and my internist was "ridiculous". Now I'm trying to get my Dr. to prescribe a home pulse oximeter, and I'm not sure they're going to do it. I'll probably have to buy it myself, but I really need it because I'm pregnant, and I want to make sure that I'm not giving my baby oxygen starvation. What do you usually get for your O2 readings (when they put the thing on your finger)? I'm looking for a little comparison. Also, how old are you. Just curious.

[grace77]

I'm 41. My sats are always good. But at my next visit they are going to do a 6 minute walk test and some more specific neuromuscular pft's.My dlco ( diffusion) is also low but not sure why.It is a scary feeling,isn't it?
You need to check with your OB and maybe they can refer you to a plmo. doc in a nearby city.