I might have found out some really important stuff for getting ENS recognized. It might be a bit complex, but please bear with me. Ask your questions, I will try to edit the post to make it more understandable.
I saw a new doctor. He diagnosed that everyday activities give me very high lactate level (700% higher than normal), which explain exhaustion. And also that when breathing with my "naked" nose, I am able to use only 50% of my lung volume. There is also a tendency towards hyperventilation, which can easily turn chronic if you dont work against it, which I do. I will outline the diagnostic tests, everyone can repeat with their doctors and potentially have an easier time, getting their suffering recognized by medical personnel and friends&family alike.
***** Please note *****
This is only the report of one single patient with ENS. It could be different for all of you, or just a subset of you. As we all know, ENS has many forms. Breathing was always my main issue with all of this.
Two weeks ago, I went to see a new doctor in Mannheim, Germany, Dr. Weiss, who specializes in breathing and the mind-body connection. He has a YouTube channel with many videos explaining stuff. It's all in Germany, but has really good automated English subtitles. Video link
We did two seperate tests, which I am showing in the attached image. Please dont get confused, they are completely seperate from each other. The top test A, and the bottom test B.
This test is also called spiro-ergometry (roughly translates to: "breathing test on a bicycle"), dont confuse it with the other test, called spirometry ("breathing measurement").
We did this one first. It is a standardized test many doctors will be able to perform. If you want to repeat it, I would look for a lung or heart doctor, or maybe someone specialized in athletes.
The test setup went like this:
The result was as ayou can see in the picutures. I started out with already elevated blood lactate levels of 4 (where 0-2 is normal). In the past I have had BGA which showed normal values, I can only speculate why it was elevated that day. The bike ride was not very stressful for my muscles (I used to do functional fitness training several times weekly), but very stressful for my mind and breathing. Afterwards, I felt a bit dizzy and slightly nauseous.
After the bike ride, the measurements showed low CO2 (medical term: hypocapnia, hyperventilation/overbreathing) in blood (pCO2) and breathing gas (EtCO2). And also lactic acidosis, meaning very high lactate in combination with lowered/acidic blood pH levels.
The doctor does this kind of testing many times per week, and he says the highet values he ever sees are in the 6-8 range, never 14mmol/L as in my case.
What does this mean? Lactate is produced when your cells trying to produce energy, but are not getting enough oxygen. This indicates my oxygen supply of cells in my body is limited. Please note, that blood oxygen measurements (SpO2) mean nothing in this regard. It is at for me 99% anyways.
So this was the first test, and I was really happy to finally see such an unmistakeable result. Lactic acidosis has symptoms of exhaustion and fatigue - this is an established fact, and my values are very high (as indicated by the machine adding a double 
next to the measurement). You can read more about it here.
Dont be confused by the name, spirometry means "breathing measurement", and is the standard test many people have already done at a lung doctor's office. It is used to determine maximum lung volume and some other values. It is usually done via the mouth, as you can see in the bkack&white-photo above. I have done this kind of measurement in the past, and I had healthy, strong values while mouth-breathing. But since we are looking at ENS, we tried something different.
My main issue has always been: During regular nose breathing, I feel that I cannot draw a satisfying breath. So we decided to modify the measurement apparatus for nasal measurement. I have attached a photo I took myself, where you can see it.
The standard procedure for this test is this:
This is repeated three times to get good measurements.
We did this set-up two times. Once with a normal, "naked"/empty nose. And a second time with all the tools I know that improve my breathing: synthetic cotton inserts, nose clip and VICKS menthol inhaler stick. Read more here: www.enstips.com/guide It was a bit tricky, but I was able to fit the nasal clip under the mask. I inhaled from the menthol before each of the three rounds of measurement.
When we got the results, the doctor and I were both really surprised. Read carefully: With my naked nose, I was able to breathe THREE liters of air into my lungs. When using cotton+clip+menthol, I was able to breathe SIX liters of air into my lungs. Double the amount!
We were both astonished and decided to repeat the test (another 3 rounds of naked nose, and 3 rounds of "assisted" nose). And the result was almost the same. TWO liters naked, and FOUR liters with cotton etc. Not sure why the numbers were different, it was with a different technician who instructed me a little differently. But the doctor said, it's not important, because the relation between the two values is again 2x.
He also looked at the other values and told me, I am basically only breathing from my chest. And when I use menthol etc, I am able to properly belly breathe.
This felt like finally confirming, what I had been describing all the time. I usually cannot take a satisfying breath, but when the cotton is just in the right place during cotton test, or with menthol inhalation, it suddenly feels like I can breathe deep into my stomach. It's like I can feel the resistance of the diaphragm, and sometimes even some tingling.
I had already stayed at the doctor's office for more than 4 hours, which is why we couldnt continue with more testing. I would be interested in isolating, which of my tools played the biggest role, cotton, clip or menthol. But I am already amazed to see such a clear result!
The measurement technique was a bit experimental, I know that. But there are also more formal ways to do "nasal spirometry", if you google it. So this is not completely novel. But as far as I know, I have not seen this be measured in ENS patients.
Now everyone is probably wondering, what might be the explanation. There is such a thing called the "nasopulmonary reflex", which has been mentioned by Scheithauer and Houser in their papers. Basically, the nose is effectively connected to the lungs through the trigeminus nerve - this is a known fact since the 1960s. For example, it has been tested, that when you spray ice water on the nasal mucosa, the lungs/bronchiae contract as aprotective mechanism.
There also seems to be an effect on CO2 tolerance, which is our main driver of breathing reflex. This paper has been mentioned by Houser in his paper.
For me, I will hand these results to my other doctors and discuss them with them. They might also come in handy when trying to apply for disability or in other situations, where I have to prove, that my suffering is real! I can finally show that there is indeed a severe issue with my breathing, causing lots of lactate buildup, lactic acidosis and hyperventilation.
For you, I hope you can feel inspired and motivated by my case to go out and try to get the same testing done by your doctor. Hopefully, you will see similarly results. It might help you greatly to prove your condition to doctors, in court, or just to your family, who doesnt understand.
If you want an indication of this might be relevant for you, try the CP-test to test yourself for low CO2-tolerance, which might indicate you have the same problems. I usually score only around 14 seconds during daytime, but feel much better when I sometimes score 25+ in the mornings. Video link
The best way to increase CO2-tolerance and breathing in general for me, has been using synthetic cotton inserts, as described in www.enstips.com/guide
If you suspect your lactate is high, one clinically proven way to improve the processing of it, is to use Gelum, which is available from German pharmacies. I have been using it for months. It can give me real boost sometimes, but be aware, it will only ever be a support, never a solution.
I value this doctor very much. He was very kind and understanding. One of the few doctors, who understand that psychosomatic means mind->body and body->mind, and that the body can cause symptoms far stronger than pure willpower could ever control. He is an expert on all things breathing, and also understands the nervous system very well.
He has heard about ENS, but didnt know much about it. But seemd genuinely interested. It seems that it is really his passion and he made it his mission in life to help people with breathing issues.
His testing was partially covered by my German public health insurance, but I had to pay for some measurements myself. They were very transparent about this: The first thing they handed to me was price list which listed every single measurement. The bike test for example cost 80€, blood gas analysis 30€.
You can make appointments there in person or also for a videocall. I was able to get an appointment within 1-2 months. https://www.weiss.de/en/
They are also running a clinic, where you can treat breathing dysfunctions like chronic hyperventilation. There you will learn for example Buteyko exercises and train with an EtCO2 capnometer. But they will also do much more, which I havent deeply looked into. They offered this to me as well. One week would be 1,500€. They were not trying to push this on me in any way.
I dont think, this will be effective in treating my case, because I have already studied Buteyko etc extensively. But for people with chronic hyperventilation, this might be really helpful though. Alternatively, you can do a much cheaper online programme, where they send you a capnometer device.
I am still considering organizing a stay at their clinic in the future, to see if we can improve my symptoms sometwhat, or be it, just to do more measurements and discuss them with a genuinely interested doctor.
I know one other German ENS patient who already went to see him and was also diagnosed with hyperventilation, chronic in their case. I will ask them to comment under this post to confirm and tell their story.
