"please keep me updated about oximeters "
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I have UARS for 99% but I can't find skilled doctor in my country, what to do?
Hello everyone, I am struggling with many symptoms of UARS since I was 15 (now I am 23). 2 months ago I ran into dr Park's website and my eyes finally opened. Thank God for such doctors! I have all symptoms of UARS :( Low blood pressure, orthostatic hypotonia, vasomotor rhinitiss all the time for 3 years now, cold hands and feet, LERD, constipation problems, depression, anxiety and constant tiredness. But the worst of all is constant brain fog, more severe each year, I barely know that I live... I have excluded all other causes of my poor health, and UARS is the only possible thing. It is also 99% possible because of my soft palate anatomy :/ I don't have narrow airway behind my tongue (x-ray), but instead my soft palate is like a "curtain", long, wide and it collapses and blocks my airway completely. Of course I am a side sleeper since I can remember. I am never able to sleep on my back. I am always more tired in the morning, when I wake up than in the evening. I also have stuffy and runny nose, recently less stuffy (not less runny) because I am using nasal steroids.
I decided to buy a CPAP (actually autopap machine) on my own, because it is possible in my country. I could barely sleep with it for 4hours the second night, I was running on APAP mode (6-16cmH2O), machine showed me that average pressure was 12,5 so now I am trying to use it in a CPAP mode on pressure 13. Exactlly... trying I can't fall asleep with CPAP, I don't know why and what was that second night with 4 hours of sleep. I am going to try some sleeping pills, maybe it will help.
I know I have to go to some doctor, do the sleep study and titration but I am scared that they will not detect RERA's. And I don't know how can I find a good sleep lab for such complex examination. In my country UARS is practically unknown yet, I can't tell doctor what I suspect. I don't know what should I do, I know that maybe I would have to have some surgeries for soft palate, like coblation, pillar etc I don't know whether I will be able to benefit from CPAP because I can't tolerate it. I am going to try with some sleep meds, maybe I will get some sleep.
I wish it is not hypochondria :( It is way easier to treat... But on the other hand I am glad that I finally know what is wrong with me, that it is not normal to have such brain fog and tiredness and runny nose all the time. I want to do something with this because I can barely function now :/
Can anyone give me any advices?
Views: 602
Replies to This Discussion
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Permalink Reply by Catherine Fic on
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Why did you give me this link? Because I am from Europe? This forum is bigger and here I can find more info about my sickness.
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Permalink Reply by RockRpsgt on
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I felt that it may help you find a good doc. You are in Europe. I was just trying to help. How do you know for sure that it is UARS and not OSA?
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Thanks for the link I will try :) I am sorry, I am a little nervous... I'm not certain, I can't be... My machine showed some hypopneas when I slept with it. However, I have symptoms of UARS, not of sleep apnea, like heart problems or high BP, or nycturia. And I am not overweight, I am thin, so it does look like UARS...
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Permalink Reply by Mary Z on
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Since you mentioned Dr. Park you probably have this link and done some research on the Internet.
http://doctorstevenpark.com/sleep-apnea-basics/upper-airway-resista...
I would follow his recommendations to the best of my ability- I know you say it is hard to find skilled doctors. Many of us cannot afford to travel and have to use available physicians. I would copy the information from Dr. Park and try to find the best ENT you can for an examination. Then if possible I would have a sleep study to rule out other sleep disorders. He lists dental devices, CPAP and as a last resort, surgery as treatment. Perhaps armed with the information from his website you can find an understanding physician willing to work with you. As Dr. Park has said, treatment is difficult as UARS is a fairly recent diagnosis.
I wish you the best of luck in getting effective and appropriate treatment, By the way I hope you have had a thorough physical exam with blood work by a skilled ( as skilled as you can find, perhaps at a teaching hospital) physician.
As to CPAP, it is listed as a treatment for UARS. This is why an sleep study and titration to find your correct pressure would be important. Perhaps you can post the reasons why you can't tolerate CPAP and maybe we can address those issues. CPAP takes commitment and determination to work. Many of us have struggled with it, finding the correct mask and pressures, but know it is our best chance for good health and have had success. You have to decide once and for all to make the machine work and go through your problems one by one until you are more comfortable. A sleeping pill may well help as you get used to the machine.
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Being thin and asymptomatic does not mean for sure UARS. Someone your age would could have apnea and not have those symptoms yet. Have you had a sleep study?
Catherine Fic said:Thanks for the link I will try :) I am sorry, I am a little nervous... I'm not certain, I can't be... My machine showed some hypopneas when I slept with it. However, I have symptoms of UARS, not of sleep apnea, like heart problems or high BP, or nycturia. And I am not overweight, I am thin, so it does look like UARS...
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Mary Z thank you :) I will do as you said, maybe I will be lucky to find a doctor that will help me... I can't come to US to dr Park unfortunately :( Yes blood test is done, everything is quite ok, a little weak immunity and slightly lower thyroid hormones level.
With regard to CPAP, I haven't done sleep study yet so I can't determine proper pressure of course, as I said before I am experimenting here. My experiment is going poorly though because I can't fall asleep with CPAP! I don't know why, I am just not able to fall asleep with it. I am using earplugs, so noise is not bothering me (only whistling in my nose with swift Fx mask...), swift mask is very light, my nose is a little stuffy but it does not seem like a problem. Flow of air of course bothers me, despite EPR function on level 3, I can't get used to it. FFM was better but with EPR it is impossible to use it because it "jumps" on my face :/ I don't know what to do.
That night I've tried to take 7,5mg of mirtazapine. 2 years ago I quit antidepressants and sleeping pills, I've been taking: zolpidem, trazodone, estazolam, diazepam, mirtazapine and some other shit for 4 years. I had problems with insomnia mostly and that's why I was on drugs. Anyway, mirtazapine didn't help, I still couldn't fall asleep with CPAP. It eally bothers me, because I want to use it so much!
RockRpsgt, I am not asymptomatic, I have all symptoms I described in my first post, there is many of them. It really doesn't matter whether it is UARS, OSA or something else. It is a sleep disorder and I have to get a treatment because it is killing me. Of course I will do a sleep study, right now I am looking for a lab that will test me for RERA's.
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Find a lab that will test you for all sleep disorders.
Catherine Fic said:Mary Z thank you :) I will do as you said, maybe I will be lucky to find a doctor that will help me... I can't come to US to dr Park unfortunately :( Yes blood test is done, everything is quite ok, a little weak immunity and slightly lower thyroid hormones level.
With regard to CPAP, I haven't done sleep study yet so I can't determine proper pressure of course, as I said before I am experimenting here. My experiment is going poorly though because I can't fall asleep with CPAP! I don't know why, I am just not able to fall asleep with it. I am using earplugs, so noise is not bothering me (only whistling in my nose with swift Fx mask...), swift mask is very light, my nose is a little stuffy but it does not seem like a problem. Flow of air of course bothers me, despite EPR function on level 3, I can't get used to it. FFM was better but with EPR it is impossible to use it because it "jumps" on my face :/ I don't know what to do.
That night I've tried to take 7,5mg of mirtazapine. 2 years ago I quit antidepressants and sleeping pills, I've been taking: zolpidem, trazodone, estazolam, diazepam, mirtazapine and some other shit for 4 years. I had problems with insomnia mostly and that's why I was on drugs. Anyway, mirtazapine didn't help, I still couldn't fall asleep with CPAP. It eally bothers me, because I want to use it so much!
RockRpsgt, I am not asymptomatic, I have all symptoms I described in my first post, there is many of them. It really doesn't matter whether it is UARS, OSA or something else. It is a sleep disorder and I have to get a treatment because it is killing me. Of course I will do a sleep study, right now I am looking for a lab that will test me for RERA's.
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