Why am I the rare case? Please tell me I'm not alone

I have been diagnosed with UARS or sleep apnea because my doctor does not know what is wrong with me and decided to treat me "on a whim" as she put it. I have 330 spontaneous arousals on my sleep study which equaled out to about an arousal every 1.5 min. My apnea index was normal with only 9 all night. And I just don't know what to do. I've been on a Cpap for 2 months now very low pressure needed the whole time. My ENT told me I have a great airway and no blockages or anything. I'm 21 and just want to feel better so desperately but when doctors tell me I'm the rarest case they've ever seen because no one has ever had a arousal index like that ever that they've seen it defeats me. I want some one to figure why I'm so tired and so weak and feel so crappy. I just want help

You are not alone. I am 30 and have been on cpap for about 14 months now, and I still wake up tired every day with a headache and sore eyes. I also went about 9 years with untreated sleep apnea (ages 20-29), which might be why it's taking so long for me to feel better. I feel for you, I know what it's like to be dealing with what you're going through, on top of everything else a 21 year old is dealing with. I dropped out of college because I just couldn't do it anymore. I kind of dropped out of life, too. Sleep apnea is a silent killer of life, and it is ok to vent. I promise you, you are not alone.

The first thought that comes to mind for me is - you need to find a better sleep doctor. I went through two primary care physicians, and several specialists (pulmonologist, neurologist, physiatrist, etc) before finding a doctor who ONLY specializes in sleep disorders, and who was actually able to get me on the right path (ie diagnosed with sleep apnea and on a cpap machine). This is where I go, sleepne.com, you need to try and find a place like this. It is far less expensive than the hospital route, and you will be working with doctors who only handle sleep related issues, and will take you very seriously (unlike your current healthcare provider).

other than that, it can take some time to start feeling better, and can also just be downright miserable.

How long did you live with untreated sleep apnea before you started using a cpap?

shelbyk51 wrote:decided to treat me "on a whim" as she put it

Is she a board certified sleep doctor?

shelbyk51 wrote:My ENT told me I have a great airway and no blockages or anything.

How would he know what is going on at night with your airway? What kind of examination did he do, and what were the results? He is not able to see what happens to your tongue and soft palate when you are sleeping.

shelbyk51 wrote: I have 330 spontaneous arousals on my sleep study which equaled out to about an arousal every 1.5 min.

I think you need help from a good doctor to solve your problem. But in any case, you should review the items in this general checklist for CPAP patients:

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping (and sex) only, and make sure the bedroom and bed are comfortable.
- Learn to appropriately handle emotional stress in your life
- Do not listen to your breathing or the sound of the machine as you are falling asleep.
- Distract your mind by thinking of a pleasant, relaxing activity that you enjoy. Thinking of sitting under an umbrella on a quiet beach with a warm gentle breeze works for me.
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems

CG

shelbyk51 wrote:I've been on a Cpap for 2 months now very low pressure needed the whole time

So exactly which machine are you using...brand and model?

UARS can cause some extra challenges because the usual markers for "effective" therapy aren't available but it can still work.
Need to know more specific information to be able to offer additional ideas.

shelbyk51 wrote:doctors tell me I'm the rarest case they've ever seen because no one has ever had a arousal index like that ever that they've seen it defeats me

These doctors sound like idiots. Many people have an arousal index on their first sleep study as high as you reported.

To get the best help from the forum, register and fill out your equipment profile.

Sometimes when doctors don't know why the sleep is bad, they choose to see if PAP helps the patient feel better, just in case stabilizing the airway helps the sleep. But there are a number of things that can destroy sleep that are not caused by breathing problems during sleep. Certain sleep doctors and their clinics specialize in helping people with sleep problems that are more subtle than those faced by the average OSA sufferer.

shelbyk51 wrote: I have 330 spontaneous arousals on my sleep study which equaled out to about an arousal every 1.5 min. My apnea index was normal with only 9 all night.

Couple of points to consider... Normally, sleep study results give AHI per hour. My AHI was 62. 62*6hrs of sleep = 372 while those may not all result in arousals it should give you some idea about the number of events. That is more than 1 per minute.
My sleep doc told me anyone with sleep apnea has UARS. So should I say my UARS is 372?
fwiw - I got mine under control by using a BiPap.

shelbyk51 wrote:shelbyk51

Be careful about taking advice from unregistered guests. There are some trolls here. It's best to stick with registered members with a long history. Pugsy and Palerider are two good ones. There are many other good ones, but those two post the most.

Hang Fire wrote:

shelbyk51 wrote:shelbyk51

Be careful about taking advice from unregistered guests. There are some trolls here. It's best to stick with registered members with a long history. Pugsy and Palerider are two good ones. There are many other good ones, but those two post the most.

I'm sorry, but I am an unregistered person here. Just because I am "guest" doesn't mean I don't have something important to say about what I have learned or experienced. The person you so eloquently attacked for being a "Guest", and putting out there his/her experience is no less capable of putting out their information. So sad that we can't all be here to try to help each other out. I think you should take a good look at your posts before you treat "Guests" like they don't count. This "Guest" you have put to the back burner could be someone of value in the near future, and could also become a registered member, who then gets the same respect you are showing to the other two here. Just my two cents, if it's worth anything.

Learning CPAP wrote:

Hang Fire wrote:

shelbyk51 wrote:shelbyk51

Be careful about taking advice from unregistered guests. There are some trolls here. It's best to stick with registered members with a long history. Pugsy and Palerider are two good ones. There are many other good ones, but those two post the most.

I'm sorry, but I am an unregistered person here. Just because I am "guest" doesn't mean I don't have something important to say about what I have learned or experienced. The person you so eloquently attacked for being a "Guest", and putting out there his/her experience is no less capable of putting out their information. So sad that we can't all be here to try to help each other out. I think you should take a good look at your posts before you treat "Guests" like they don't count. This "Guest" you have put to the back burner could be someone of value in the near future, and could also become a registered member, who then gets the same respect you are showing to the other two here. Just my two cents, if it's worth anything.

not really, if you don't give enough of a shit to join the forum, and establish a personality that people can relate to, then you're going to be in the same category as the trolls that love to pop in and make some inflammatory comment to rile people up. for all we know, you're the asshole that said "hey, I'm a truck driver, how do I cheat on cpap for my driving test?"

palerider wrote:

Learning CPAP wrote:

Hang Fire wrote:

shelbyk51 wrote:shelbyk51

Be careful about taking advice from unregistered guests. There are some trolls here. It's best to stick with registered members with a long history. Pugsy and Palerider are two good ones. There are many other good ones, but those two post the most.

I'm sorry, but I am an unregistered person here. Just because I am "guest" doesn't mean I don't have something important to say about what I have learned or experienced. The person you so eloquently attacked for being a "Guest", and putting out there his/her experience is no less capable of putting out their information. So sad that we can't all be here to try to help each other out. I think you should take a good look at your posts before you treat "Guests" like they don't count. This "Guest" you have put to the back burner could be someone of value in the near future, and could also become a registered member, who then gets the same respect you are showing to the other two here. Just my two cents, if it's worth anything.

not really, if you don't give enough of a shit to join the forum, and establish a personality that people can relate to, then you're going to be in the same category as the trolls that love to pop in and make some inflammatory comment to rile people up. for all we know, you're the asshole that said "hey, I'm a truck driver, how do I cheat on cpap for my driving test?"

And there lies the problem. Many people are not trolls, but you are one of those that want to pin "Troll" onto everyone just because they post as "Guest". Now, I am a very new user here, I came here for help. As did the original poster here, and such poster did not deserve the negative remarks from someone else just because said person wanted to name that person a "Troll". By the way, I am "Guest" who posted regarding the negative remark regarding a "Guest". I am not said person who thinks they can cheat on a test. You can't label everyone just because you want to. Show some respect, I don't have to have a name here until I decide I will be a regular part of this community. For now, I will ask and maybe help when I can. Like I have with Tricare and suggestions of where to buy supplies using insurance. Some of us can be helpful you know, so until I post some stupid remark I think I deserve some respect from at least those that are serious about CPAP use.

Guest wrote:

palerider wrote:

Learning CPAP wrote:

Hang Fire wrote:

shelbyk51 wrote:shelbyk51

Be careful about taking advice from unregistered guests. There are some trolls here. It's best to stick with registered members with a long history. Pugsy and Palerider are two good ones. There are many other good ones, but those two post the most.

I'm sorry, but I am an unregistered person here. Just because I am "guest" doesn't mean I don't have something important to say about what I have learned or experienced. The person you so eloquently attacked for being a "Guest", and putting out there his/her experience is no less capable of putting out their information. So sad that we can't all be here to try to help each other out. I think you should take a good look at your posts before you treat "Guests" like they don't count. This "Guest" you have put to the back burner could be someone of value in the near future, and could also become a registered member, who then gets the same respect you are showing to the other two here. Just my two cents, if it's worth anything.

not really, if you don't give enough of a shit to join the forum, and establish a personality that people can relate to, then you're going to be in the same category as the trolls that love to pop in and make some inflammatory comment to rile people up. for all we know, you're the asshole that said "hey, I'm a truck driver, how do I cheat on cpap for my driving test?"

And there lies the problem. Many people are not trolls, but you are one of those that want to pin "Troll" onto everyone just because they post as "Guest". Now, I am a very new user here, I came here for help. As did the original poster here, and such poster did not deserve the negative remarks from someone else just because said person wanted to name that person a "Troll". By the way, I am "Guest" who posted regarding the negative remark regarding a "Guest". I am not said person who thinks they can cheat on a test. You can't label everyone just because you want to. Show some respect, I don't have to have a name here until I decide I will be a regular part of this community. For now, I will ask and maybe help when I can. Like I have with Tricare and suggestions of where to buy supplies using insurance. Some of us can be helpful you know, so until I post some stupid remark I think I deserve some respect from at least those that are serious about CPAP use.

One final note:

It is interesting that someone who has been given the high marks can treat me with the language such as you used with me, Palerider. What a shame! Maybe you should be reported for trolling.

Guest wrote:And there lies the problem. Many people are not trolls, but you are one of those that want to pin "Troll" onto everyone just because they post as "Guest". Now, I am a very new user here, I came here for help. As did the original poster here, and such poster did not deserve the negative remarks from someone else just because said person wanted to name that person a "Troll". By the way, I am "Guest" who posted regarding the negative remark regarding a "Guest". I am not said person who thinks they can cheat on a test. You can't label everyone just because you want to. Show some respect, I don't have to have a name here until I decide I will be a regular part of this community. For now, I will ask and maybe help when I can. Like I have with Tricare and suggestions of where to buy supplies using insurance. Some of us can be helpful you know, so until I post some stupid remark I think I deserve some respect from at least those that are serious about CPAP use.

you look like a troll, you're acting like a troll, you're in here complaining and bitching about things... maybe you are a troll, just trying a different tact... who knows.

you don't *deserve* respect, you're an anonymous voice in the dark.

palerider wrote:

Guest wrote:And there lies the problem. Many people are not trolls, but you are one of those that want to pin "Troll" onto everyone just because they post as "Guest". Now, I am a very new user here, I came here for help. As did the original poster here, and such poster did not deserve the negative remarks from someone else just because said person wanted to name that person a "Troll". By the way, I am "Guest" who posted regarding the negative remark regarding a "Guest". I am not said person who thinks they can cheat on a test. You can't label everyone just because you want to. Show some respect, I don't have to have a name here until I decide I will be a regular part of this community. For now, I will ask and maybe help when I can. Like I have with Tricare and suggestions of where to buy supplies using insurance. Some of us can be helpful you know, so until I post some stupid remark I think I deserve some respect from at least those that are serious about CPAP use.

you look like a troll, you're acting like a troll, you're in here complaining and bitching about things... maybe you are a troll, just trying a different tact... who knows.

you don't *deserve* respect, you're an anonymous voice in the dark.

OH my I remembered to type in my Username.

All I can say is Wow, Just Wow! I just made a point about someone's post being attacked without a true and viable reason. And then you attacked me. Who's bitching? You are, and you are treating me like crap. So cut the CRAP! You have zero respect from me. You will never have any from me, you don't deserve it. It is a sad affair when you can treat people the way you are. Palerider? Just what does that mean? So because someone puts on a Username, they somehow become a recognizable person who deserves to be treated with respect? Come on, you were new once, I am sure you weren't treated the way you are treating me. So sad! No need to respond, you don't deserve another response in return. I am here to get help and perhaps offer a little in return. What a great way to welcome people in. Sheesh!

palerider wrote:not really, if you don't give enough of a shit to join the forum, and establish a personality that people can relate to, then you're going to be in the same category as the trolls that love to pop in and make some inflammatory comment to rile people up. for all we know, you're the asshole that said "hey, I'm a truck driver, how do I cheat on cpap for my driving test?"

You have established a personality of THE Village Idiot Troll = VIT.
And I suspect this is your sneaky alter ego

Hang Fire wrote:

shelbyk51 wrote:shelbyk51

Be careful about taking advice from unregistered guests. There are some trolls here. It's best to stick with registered members with a long history. Pugsy and Palerider are two good ones. There are many other good ones, but those two post the most.

And if you search the history this troll only comes out to make negative sarcastic remarks.

Hey PR why did JediMark kick your trolling personality to the curb even after he defended you? He saw the light?
What an angry hostile life you lead, too bad, soo sad. Hope you didn't have any kids.