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UARS & Barbituates
So I had one of the worst nights ever. I literally did not sleep. My neurologist at the VA gave me a prescrip (butalbital) for when I have a severe onset of a migraine. Like when I'm driving and it hits suddenly so awful it actually makes me jump like someone is stabbing me thru the top of my head into my eye. Well it has a barbituate in it and it was the first time I took it. I took it about 1-2 hrs before bedtime. I have sleep apnea (Upper Airway Resistance Syndrome to be more specific). I did not sleep. The handful of times I dozed, I literally jumped up heart racing unbelievably bad (way worse than anything I've ever had in the past with my sleep issue) because I thought not only was I completely stopping breathing but I literally after the first 2 kicks of it doing that that I would go to sleep and not wake up. Why in holy Hannah's name would a doctor prescribe that to someone with a breathing disorder? (It's only been today that I looked and saw that a sleep disordered person should not take barbituates.) Well on top of that, I contacted my insurance about the surgery for soft palate etc because my RDI index without a cpap is 40 and with a cpap is 23. The mouth appliance did not work and the cpap only helps slightly. My insurance considers UARS and anything to do with it experimental and doesn't even classify it as having anything to do with sleep apnea. They won't even count RERA's, only Apneas and Hypopneas. Therefore won't treat or approve any coverage at all for anything to do with UARS. This is awful. How am I supposed to get adequate treatment? I can only assume that like "real" sleep apnea, left untreated, my UARS could damage my heart and everything else. It's already effected my blood pressure (hypotension in lieu of the hypertension often seen with apnea). My PCP won't even accept the sleep study from the sleep clinic and let me bring it to the VA for treatment because she feels it does not meet the criteria because I only had 7 hypopnias. My 200+ RERA's in 6 hours didn't matter. I'm so frustrated and worried and just fed up. I don't even know what direction to go anymore.
Hi Shane,
I've worn the CPAP every night since I got it. I think 8-9 months now. I've never stopped. It actually doesn't bother me as much as I heard others say it does. Despite still feeling tired, I do have the fear of what it's doing by me not wearing it and that keeps me wearing it. I even take it with me when I travel. I definitely abide by all the cpap rules and have even switched masks a couple of times to make sure I had the right fit, have a cleaning routine down and the whole nine. Have had the pressure changed by doctor etc.
My point with that is that I still feel like total crap. I had a great PCP for about 10 years and watched him go from spending a lot of time and concern on you to being a "fast food" type operation and then I moved. Because I've had so many doctor appointments etc, cost was adding up. I decided to go ahead and get my PCP at the VA because I didn't have to pay for anything. She's very nice but just like with I think 6-8 doctors I've had since then, "Chiari is nothing and doesn't cause my issues." It's in my head. I went into my last appointment with her in so much pain and hadn't slept and got choked up when she dismissed me and she told me, "see you're having a panic attack." Got my records after that and that day she added, "history of depression and anxiety" to my file just simply because I came in that day and was teary-eyed from pain, lack of sleep and her dismissal. Nice to know she could diagnose me with that by seeing a couple tears during the last 30 seconds before she shoved me out the door.
As for records, I'm one of the most meticulous, anal people you'll ever meet when it comes to that. I even have a spreadsheet that tells you the last 10 years worth of my blood pressure, heart rate, temperatures and the dates. I started putting all this together in the last 3 years when I was trying to find out what was wrong. Which eventually led a doctor at Ohio State to confirm I do have C1M. But I have no blockage and he would rather I see another specialist for a while and wait because my brain "looks healthy, no blockage, no lesions" etc.
At any rate, despite Mayfield Chiari Center not taking Aetna, I called them today and have submitted my information to them. I'll go from there.
But I do appreciate everyone's help and encouragement. I guess I just need to rant. I've already read every article online I can think of about Chiari, sleep disorders, vitamin deficiencies, digestion, anything and everything related I can think of.
Hopefully they can help. If not, well, not much else I can do.
I've worn the CPAP every night since I got it. I think 8-9 months now. I've never stopped. It actually doesn't bother me as much as I heard others say it does. Despite still feeling tired, I do have the fear of what it's doing by me not wearing it and that keeps me wearing it. I even take it with me when I travel. I definitely abide by all the cpap rules and have even switched masks a couple of times to make sure I had the right fit, have a cleaning routine down and the whole nine. Have had the pressure changed by doctor etc.
My point with that is that I still feel like total crap. I had a great PCP for about 10 years and watched him go from spending a lot of time and concern on you to being a "fast food" type operation and then I moved. Because I've had so many doctor appointments etc, cost was adding up. I decided to go ahead and get my PCP at the VA because I didn't have to pay for anything. She's very nice but just like with I think 6-8 doctors I've had since then, "Chiari is nothing and doesn't cause my issues." It's in my head. I went into my last appointment with her in so much pain and hadn't slept and got choked up when she dismissed me and she told me, "see you're having a panic attack." Got my records after that and that day she added, "history of depression and anxiety" to my file just simply because I came in that day and was teary-eyed from pain, lack of sleep and her dismissal. Nice to know she could diagnose me with that by seeing a couple tears during the last 30 seconds before she shoved me out the door.
As for records, I'm one of the most meticulous, anal people you'll ever meet when it comes to that. I even have a spreadsheet that tells you the last 10 years worth of my blood pressure, heart rate, temperatures and the dates. I started putting all this together in the last 3 years when I was trying to find out what was wrong. Which eventually led a doctor at Ohio State to confirm I do have C1M. But I have no blockage and he would rather I see another specialist for a while and wait because my brain "looks healthy, no blockage, no lesions" etc.
At any rate, despite Mayfield Chiari Center not taking Aetna, I called them today and have submitted my information to them. I'll go from there.
But I do appreciate everyone's help and encouragement. I guess I just need to rant. I've already read every article online I can think of about Chiari, sleep disorders, vitamin deficiencies, digestion, anything and everything related I can think of.
Hopefully they can help. If not, well, not much else I can do.
Okay, first and foremost; I'm not a Licensed Medical Expert, so take my opinions and advice with that understood :)
As a general rule, barbituates aren't really all that dangerous for people with sleep apnea- unless you abuse them.There are some studies that suggest a problem with apnea from butalbital, but it's very low - less than 10%. The waking jerks are more likely to just be your brain worrying. If the CPAP itself doesn't keep you awake, try wearing it - rest assured that it'll keep you breathing.
To be honest, the statistics are about 50/50 as to if this surgery (Uvulopalatopharyngoplasty - UPPP;) really helps with apneas. I would recommend checking into it further however, as it seems to have helped me. Now to scare you; I've seen and heard several people talk about how painful recovery is - my own surgeon said this procedure would be more painful than brain sugery! I disagree, but thought you should be aware.
Your best friend throughout all of your Chiari-related (do you have Chiari?) issues should be your PCP. Keep in mind that he/she works FOR YOU. if he/she refuses to listen to your concerns...go to another one!!! I know that's easier said than done with the VA, but the advice stands :). Make sure you get along with him/her (that doesn't necessarily mean they need to really be your friend, but they need to respect your opinion and listen to you). This decision may possibly be the most important one that you make - maybe even moreso than which surgeon you pick. Your PCP is the one you're gonna see many times throughout the years. He/she is going to be your advocate in a lot of ways - he/she decides if you need to worry about your sleep apnea or your breathing or whether you can go to whatever specialist you need. Once they decide, they will refer you and insurance will usually pay once the PCP and Specialist send in their forms, pictures, and scans.
I recommend that you get a notebook and write down any and all symptoms, and any questions you have - once we are in the office, we often forget to actually ask our big questions. And make sure you write down the answers, get the Dr. to spell any "big words", that way you can google it when you get home - lot easier than trying to remember whatever the Dr's talking about.
Whereabouts do you live? I'll see if I know anyones reputation.
As a general rule, barbituates aren't really all that dangerous for people with sleep apnea- unless you abuse them.There are some studies that suggest a problem with apnea from butalbital, but it's very low - less than 10%. The waking jerks are more likely to just be your brain worrying. If the CPAP itself doesn't keep you awake, try wearing it - rest assured that it'll keep you breathing.
To be honest, the statistics are about 50/50 as to if this surgery (Uvulopalatopharyngoplasty - UPPP;) really helps with apneas. I would recommend checking into it further however, as it seems to have helped me. Now to scare you; I've seen and heard several people talk about how painful recovery is - my own surgeon said this procedure would be more painful than brain sugery! I disagree, but thought you should be aware.
Your best friend throughout all of your Chiari-related (do you have Chiari?) issues should be your PCP. Keep in mind that he/she works FOR YOU. if he/she refuses to listen to your concerns...go to another one!!! I know that's easier said than done with the VA, but the advice stands :). Make sure you get along with him/her (that doesn't necessarily mean they need to really be your friend, but they need to respect your opinion and listen to you). This decision may possibly be the most important one that you make - maybe even moreso than which surgeon you pick. Your PCP is the one you're gonna see many times throughout the years. He/she is going to be your advocate in a lot of ways - he/she decides if you need to worry about your sleep apnea or your breathing or whether you can go to whatever specialist you need. Once they decide, they will refer you and insurance will usually pay once the PCP and Specialist send in their forms, pictures, and scans.
I recommend that you get a notebook and write down any and all symptoms, and any questions you have - once we are in the office, we often forget to actually ask our big questions. And make sure you write down the answers, get the Dr. to spell any "big words", that way you can google it when you get home - lot easier than trying to remember whatever the Dr's talking about.
Whereabouts do you live? I'll see if I know anyones reputation.
COMMUNITY LEADER
It is sad when we have to do things like this, but we r better off in doing so...we have to advocate for ourselves as no1 else will...and we deserve the best care possible : )
Yes, I called her and that was when she also informed me that she won't allow me to be treated there for UARS because it's not really sleep apnea basically. I think I'm just going to bite the bullet and see if I can go see Dr. Tew at Mayfield Chiari even though they don't accept my insurance.
COMMUNITY LEADER
Hi...I am so sorry u had this reaction to the med...not everyone will have this issue with the meds so I am sure ur Dr thought it was worth a try.
Did u call him/her to let them know how it affected u?...and do not take nemore...which I am sur eu wouldn't at this point...but so talk to ur Dr.
I will let shane know that u again r having an issue, mayb he can suggest something, he is very creative in dealing with these issues.
Hang in there
"selma"
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