Sleep study shows No apnea or UARS, Trying Cpap

[emreee93]

Hello everyone,

My name is emre I am 24 years old and I live in Amsterdam, The Netherlands. Since a year now I have been the victim of extreme fatigue that slowly took over my life to the point I can’t go to the university any more. These are my symptoms:

Muscle weakness
Dry mouth/throat specially during awakening
Short breath
Extreme fatigue
No concentration-very bad short term memory
2-3 times a night I wake up beceause of dry mouth sometimes not at all.
Unrefreshening sleep

After some medical tests my girlfriend noticed me having trouble breathing overnight. When I told this to my physician he wanted to look for possible OSA. I did an In home sleep study polysomnographic which showed:

Ahi4,3
Rera 1.1

Rem 18%

According to the sleep doctor no typical signs of osas

I told my physician that I wanted another one beceause my ahi is very close to mild apnea . So I was referred to another sleep clinic that also did an in home sleep study poly as well. It was a second opinion. The results:

Ahi 0,9
Rera 0
Flow limitation 0
Rdi 0,9

Rem 17,1 %

This doctor also said that I had no sleep apnea. I asked him about UARS beceause I did some research about it and he was not very educated about the matter but he said that I did not have it. I understand UARS means low ahi and <5 rera right?

I’m at the point that my physician says he can not find any other medical reason for my short breath and extreme fatigue. I am feeling very depressed and I am prepared to do everything to feel better beceause life sucks like this ! I want to try a Cpap even though my study is negative are there any people with experience ? Please do not mind my English I know it sucks :p


I look forward hearing from you !

[Pugsy]

Your English is much better than some of use who have it for our primary language and certainly 100% better than my Dutch.
So no worries there.

UARS is a difficult diagnosis to come up with in the best of circumstances and certainly no way could it be definitively ruled out with an in home sleep study.
The for sure diagnostic tool for UARS is what is called a Pes device that measures esophageal pressure.
http://www.sleepmedicinecenters.com/Sle ... ceSyndrome

Historically it seems that in home sleep studies (depends on how comprehensive the sleep study) seem to maybe under score OSA...if you had a sleep study with EEG that gave you sleep stages like REM then it sounds like you probably had a more comprehensive sleep study and not just a plain overnight pulse ox test.

I don't blame you for wanting to try anything and everything in an effort to get to feeling better. Will cpap help? We don't know...heck some people with full blown OSA say that it doesn't help but it's worth a try. Now getting your doctor on board so they will furnish the equipment might be a substantial hurdle where you live especially if you are wanting someone else to pay for the equipment or supply it.
There are ways of getting masks and machines on your own if you want to go down that road and we can help if that is what you wish to do.

There are some forum members with relatively "mild" OSA per the numbers who have said that cpap has helped them a lot. I am not one of those though...my OSA wasn't mild at all.

[Julie]

You may have anything from chronic fatigue syndrome, to Guillain Barre Syndrome (a neurologic problem that 'moves' fast and muscle weakness is a big factor), to Lyme disease, maybe none of those but maybe some hematologic problem. You must be fully tested and examined for those things as you may well NOT have apnea, but some other problem that should be taken care of immediately. Please don't be shy about asking for a 2nd or 3rd opinion as I believe your doctor is only looking to put you in an 'obvious' box and not looking for other serious conditions. Don't give up, but push, and if necessary find a friend or family member to speak for you in aggressively looking for an answer.

[emreee93]

Thank you for the quick response. Well I am so tired and English is not my native language so I expect some
Strange sentences here and there. I will try to answer everyone’s questions and opinions in these bullet points:

1. . To be clear I did a polysomnographic test. So with all the things attached to my head which records brain activity, something on my nose and mouth for breathing, pulse ox, some sensors on my chest and neck and 2 waists around my
Body. Here in the Netherlands they usually do this in the hospital but these sleep clinics did it st home beceause it was better they said. I had 25.4 % sleep stage 3 and 17.1 % sleep stage rem is that normal?

2. Also there was only one central apnea measured

3. I know that UARS is difficult to diagnose. I did not know about it until I researched that they measure it with reras. Which the sleep clinic tested but was 0 which I found strange but it could be I have no at all. If I knew earlier I would want to go to the best clinic in the Netherlands that is like the top clinic for sleep disordered breathing. but this one I went to was good as well and they measured reras.

4. Here in the Netherlands the insurance system is very different so everything is free however you need permission from you physisican to go to a specialist.so they won’t let provide me with any equipment. I can buy a second hand fisher and paykel auto set with nose and full face mask. Which I am planning to do. I just want to test it heck I don’t care anymore !

5. I have been to a shrink for 3 months I even was on anti depressants but it made me feel way worse as I became more tired. He could not find any mental disorders like depression. Anxiety was a thing though but that is beceause of the damn tiredness.

6. I find it difficult to find a bipap machine second hand and it is very vague some expert say uars is better treated with high pressures and others say low pressure

7. These are the tests I took

Full blood test - slightly higher Ige values which could mean allergies
Lung function test
Ent looked in my nose / throat
2 sleep studies
Parasitic test
Thyroid test

8. Tomorrow I have a consult with my physisican and I want to ask him to send me to ent doctor to do a sleependoscopy. This ent is familiar with UARS. I don’t know what to do guys I know there are different medical reasons to be fatigue but why the dry throat during the night and the awakenings in the night I just don’t know it gives me a bad feeling. Maybe I am just short of breath and during me sleep I get very heavy breathing as well but is not apnea related I just don’t know !

What else should I ask my physisican any tips ?

[Julie]

You probably do sleep with your mouth open, but that doesn't mean you have apnea, UARS or anything else related except possibly an obstructed nose for whatever reason. Have you thought about the other things I mentioned?

[Pugsy]

Check out secondwindcpap.com for machine options if you are planning to purchase out of pocket.
http://www.secondwindcpap.com/

I don't know if it will help or not. Just making sure you have available choices if that's what you want to do.

[kteague]

Is your shortness of breath also during the day or only when you wake up during the night? If only at night, that would add to suspicion of sleep disordered breathing. If you are short of breath during the day, your doctor needs to find out why. I had a doctor once who was more than willing to test me to rule out the most obvious suspects, but each time when he gave me the negative result it was rather dismissively. Finally I told him that knowing what isn't wrong wasn't enough, I needed to know what WAS wrong. And to please keep looking until he could tell me that. You may have to say something similar to your doctor. I'm of mixed feelings on whether you should try CPAP or not. Seems not enough evidence either way. If you decide to do so, it probably should be on a rental basis for a while to see if you notice a difference. You mentioned your sleep not being restful. Do you happen to move your feet/legs a lot when you sleep? Good luck with sorting things out. Has your doctor checked things like your Vitamin D level and B12?

[emreee93]

You probably do sleep with your mouth open, but that doesn't mean you have apnea, UARS or anything else related except possibly an obstructed nose for whatever reason. Have you thought about the other things I mentioned?

Yes I read it sorry for not replying to it ! Well I think they included lymes
Disease in the first test although I believe there are more specific ones. My physisican want to send me to a center for people with chronic fatigue syndrome where they have a multidisciplinary team to help you cope with the fatigue and maybe heal it. But I find that so vague it just means you don’t know why I am fatigue and they are just going to do physiotherapy and
Maybe some dietary adjustment. I am very healthy I eat healthy all my life and I am very active, before this I was athletic, I am a flamenco guitarist so I play in theatres and restaurants in and around Amsterdam very often. Now I can’t do anything and don’t believe some chronic fatigue therapy will help it.

I just don’t know what to say to my physisican to look further beceause he says I already tested so much . That is why I want to try Cpap I have a young friend who had a similar story to me. Negative sleep study but Cpap therapy helped him.

[emreee93]

Is your shortness of breath also during the day or only when you wake up during the night? If only at night, that would add to suspicion of sleep disordered breathing. If you are short of breath during the day, your doctor needs to find out why. I had a doctor once who was more than willing to test me to rule out the most obvious suspects, but each time when he gave me the negative result it was rather dismissively. Finally I told him that knowing what isn't wrong wasn't enough, I needed to know what WAS wrong. And to please keep looking until he could tell me that. You may have to say something similar to your doctor. I'm of mixed feelings on whether you should try CPAP or not. Seems not enough evidence either way. If you decide to do so, it probably should be on a rental basis for a while to see if you notice a difference. You mentioned your sleep not being restful. Do you happen to move your feet/legs a lot when you sleep? Good luck with sorting things out. Has your doctor checked things like your Vitamin D level and B12?

My shortness of breath is also very during the day. Yes I know I don’t want to fully focus on Cpap therapy but I just felt like I need to do something ! No he did not actually test me for those I am going to ask him about that tomorrow I have read that those and also magnesium deficiency can be true killers! I am very short of breath during the day so it is not unlogoical that during my sleep this gets worse and that is what my girlfriend heard. Thank you

[emreee93]

Check out secondwindcpap.com for machine options if you are planning to purchase out of pocket.
http://www.secondwindcpap.com/

I don't know if it will help or not. Just making sure you have available choices if that's what you want to do.

Thanks for the site I will check it out. Do you know if they also send to the Netherlands/Europe ?

[Pugsy]

Thanks for the site I will check it out. Do you know if they also send to the Netherlands/Europe ?

As far as I know they will ship all over the world.

[emreee93]

Is your shortness of breath also during the day or only when you wake up during the night? If only at night, that would add to suspicion of sleep disordered breathing. If you are short of breath during the day, your doctor needs to find out why. I had a doctor once who was more than willing to test me to rule out the most obvious suspects, but each time when he gave me the negative result it was rather dismissively. Finally I told him that knowing what isn't wrong wasn't enough, I needed to know what WAS wrong. And to please keep looking until he could tell me that. You may have to say something similar to your doctor. I'm of mixed feelings on whether you should try CPAP or not. Seems not enough evidence either way. If you decide to do so, it probably should be on a rental basis for a while to see if you notice a difference. You mentioned your sleep not being restful. Do you happen to move your feet/legs a lot when you sleep? Good luck with sorting things out. Has your doctor checked things like your Vitamin D level and B12?

~~~~~~~~~~
My shortness of breath is also very during the day. Yes I know I don’t want to fully focus on Cpap therapy but I just felt like I need to do something ! No he did not actually test me for those I am going to ask him about that tomorrow I have read that those and also magnesium deficiency can be true killers! I am very short of breath during the day so it is not unlogoical that during my sleep this gets worse and that is what my girlfriend heard. Thank you

===

you need a full lab test with all minerals vitamins and other substances not just the usual top ten tests

have you seen a lung doctor

Yes I will ask him about those tomorrow. Also he said my symptoms are to severe for allergies. I might ask him to refer me to an allergist. What should I ask him then just to test me for minerals, vitamins and other substances or should I be more specific? Yes I have seen one and my lungs are functioning good.

[Julie]

Emree - please please do not interact with (or question) xxxycy - he's a troll, a big problem, mentally deranged and is driving us all crazy - do not listen to (or read) his stuff. Sorry!

[Pesser]

Check out secondwindcpap.com for machine options if you are planning to purchase out of pocket.
http://www.secondwindcpap.com/

I don't know if it will help or not. Just making sure you have available choices if that's what you want to do.

Thanks for the site I will check it out. Do you know if they also send to the Netherlands/Europe ?

I just received my new machine (bipap auto) from secondwind. It took less than a week. They are in mid west US. I'm in Canada.

My AHI was 3.8. The cpap treatment did wonders and I feel much better now....good luck!

[Mogy]

Hi emreee93,
One thing to keep in mind is that CPAP therapy will only make your dry mouth and throat worse.
From my experience it is due to leaks of the air pressure through your mouth. Even with a small leak a lot of air is pushed through.
A couple of things you could try for your dry mouth before you get a CPAP is ensure your mouth is closed while sleeping.
Some use a chin strap, others use a cervical collar, and some even go as far as taping their mouth closed.
I use a collar and tape.
Good luck with whatever you decide.