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Is it the CPAP or the sleep study i can't handle? & is this all related in some fashion?
I was originally diagnosed with Sleep Apnea a number of years ago now (not even sure when but it was sometime around 2001) and had two studies, or more precise, a study and a half done at that time. "A study and a half" because i ended up quitting the study with the CPAP - i just couldn't handle the machine. I would get myself in a state of panic - manage to work thru it in some fashion and get to sleep, then the tech would adjust the pressure which would wake me up and get me in the cycle all over again. Anyhow i ended up leaving the study early and basically never contacted, or heard from, the dr again, until...
Somehow, and not sure how, i managed to work thru it - it was routine that i would wake up at 3 or so in the morning - be up for an hour or so and then get to sleep. I functioned - maybe it was the over the counter supplements that were supposed to help my brain function, i dunno.
At the time of the first study i was around 300 pounds - at 6 foot 1 that's not a good weight.
Now i should say years before i had something that i found out later was the development of Hashimotos Thyroditis - but i can't remember if i was symptomatic at that time.
Over the years managed to drop my weight down to 270 or so - much more then it should be but for me a major accomplishment. Unfortunately in Aug 06 after what was thought of as a heart related event, i ended up being treated for the thyroid issues - that eventually lead to most of my thyroid being removed around May of 08. (I had had about 23 nodules on my thyroid - was told they took out enough material about the size of a softball - and i lost a couple of inches in my neck size.)
Unfortunately, i think i have a doctor treating me for this that are idiots - they kept me in almost a constant state of fear that the thyroid was cancerous - every ultra sound would lead to a biopsy and a comical set of errors that i would detail if this was a forum on thyroid issues (or crappy doctors).
Let's just say in directly because of that and other issues (i was told in December 08 i would be losing my job - which finally happened in March of 09) i gained weight - right now back over 300.
I should also mention i have been diagnosed with rls and copd - and before anyone asks, no i don't smoke.
Having the time off and qualifying for President Obama's help in paying Cobra - i ended up getting a lot of things checked including my sleep apnea. I met with a physcians assistant who mastered Scare The Crap out of Your Patient 101 by informing me i was a candidate for a perminent tracheotomy - as well as mentioning the CPAP, Oral Appliance and even surgery,.
During this time i thought i would be headed towards a second surgery on my thyroid (thanks, in part, to the other drs office wanting to do still another biopsy - something like the 6th or 7th) so i held off on things thinking the dr who could remove the thyroid could do surgery to clear out breathing spaces. But he decided i didn't need the additional surgery on the thyroid, and that the CPAP was the best cure for sleep apnea.
Had the first of the second round of sleep studies done - and ended up leaving that early - i just never could remember sleeping - and was surprised when the tech told me that iw as sleeping during the night (just remember being awake, hearing other people snoring, and being extremely envious).
This past Monday night i had the study with the CPAP, and just like the first study ended up quitting it early. Before the study started i tool my rls meds, as well as some tylenol pm, thinking they would both take the edge off enough that i'd be able to tolerate it. Got strapped into the bed, wired for sound, and managed to at least get slowly adjusted to the mask.
At one int he morning my leg was bugging me so i had to sit up to get it cleared - and about 90 mins later i had to go to the bathroom. I don't know what happened, but somehow when i made it back to the bed and got strapped back in again i just couldn't stand having that damn mask on my face. Or maybe it was being strapped into the bed. Still not entirely sure.
Thru Twitter i heard about IHATECPAP.com and they put me in touch with a local dentist who does an Oral Appliance - haven't heard back from them as of yet. I do know there is a chance i could work with a psychiatrist to help me adjust to the CPAP, but at this point i don';t want to go thru the sleep study again - just something humiliating about it.
As i have hinted around - i have had a litany of health issues the past few years and just wonder if this is all related in some fashion. I know i need to work on losing the weight, and am trying to walk when the fatigue isn't bad enough to allow me to do that.
Anyhow guess i am just writing this as much to get this off of my chest and see if anyone is out there who can tell me i am not losing my mind (well at least as far as this is concerned).
Somehow, and not sure how, i managed to work thru it - it was routine that i would wake up at 3 or so in the morning - be up for an hour or so and then get to sleep. I functioned - maybe it was the over the counter supplements that were supposed to help my brain function, i dunno.
At the time of the first study i was around 300 pounds - at 6 foot 1 that's not a good weight.
Now i should say years before i had something that i found out later was the development of Hashimotos Thyroditis - but i can't remember if i was symptomatic at that time.
Over the years managed to drop my weight down to 270 or so - much more then it should be but for me a major accomplishment. Unfortunately in Aug 06 after what was thought of as a heart related event, i ended up being treated for the thyroid issues - that eventually lead to most of my thyroid being removed around May of 08. (I had had about 23 nodules on my thyroid - was told they took out enough material about the size of a softball - and i lost a couple of inches in my neck size.)
Unfortunately, i think i have a doctor treating me for this that are idiots - they kept me in almost a constant state of fear that the thyroid was cancerous - every ultra sound would lead to a biopsy and a comical set of errors that i would detail if this was a forum on thyroid issues (or crappy doctors).
Let's just say in directly because of that and other issues (i was told in December 08 i would be losing my job - which finally happened in March of 09) i gained weight - right now back over 300.
I should also mention i have been diagnosed with rls and copd - and before anyone asks, no i don't smoke.
Having the time off and qualifying for President Obama's help in paying Cobra - i ended up getting a lot of things checked including my sleep apnea. I met with a physcians assistant who mastered Scare The Crap out of Your Patient 101 by informing me i was a candidate for a perminent tracheotomy - as well as mentioning the CPAP, Oral Appliance and even surgery,.
During this time i thought i would be headed towards a second surgery on my thyroid (thanks, in part, to the other drs office wanting to do still another biopsy - something like the 6th or 7th) so i held off on things thinking the dr who could remove the thyroid could do surgery to clear out breathing spaces. But he decided i didn't need the additional surgery on the thyroid, and that the CPAP was the best cure for sleep apnea.
Had the first of the second round of sleep studies done - and ended up leaving that early - i just never could remember sleeping - and was surprised when the tech told me that iw as sleeping during the night (just remember being awake, hearing other people snoring, and being extremely envious).
This past Monday night i had the study with the CPAP, and just like the first study ended up quitting it early. Before the study started i tool my rls meds, as well as some tylenol pm, thinking they would both take the edge off enough that i'd be able to tolerate it. Got strapped into the bed, wired for sound, and managed to at least get slowly adjusted to the mask.
At one int he morning my leg was bugging me so i had to sit up to get it cleared - and about 90 mins later i had to go to the bathroom. I don't know what happened, but somehow when i made it back to the bed and got strapped back in again i just couldn't stand having that damn mask on my face. Or maybe it was being strapped into the bed. Still not entirely sure.
Thru Twitter i heard about IHATECPAP.com and they put me in touch with a local dentist who does an Oral Appliance - haven't heard back from them as of yet. I do know there is a chance i could work with a psychiatrist to help me adjust to the CPAP, but at this point i don';t want to go thru the sleep study again - just something humiliating about it.
As i have hinted around - i have had a litany of health issues the past few years and just wonder if this is all related in some fashion. I know i need to work on losing the weight, and am trying to walk when the fatigue isn't bad enough to allow me to do that.
Anyhow guess i am just writing this as much to get this off of my chest and see if anyone is out there who can tell me i am not losing my mind (well at least as far as this is concerned).
Views: 110
Replies to This Discussion
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Permalink Reply by RockRpsgt on
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First of all welcome to sleep guide. i am very sorry for all of the thing s that you have gone through. You should be proud of the fact that you are still fighting for better health. I would like to hit a few points of your post individually.
should also mention i have been diagnosed with rls and copd - and before anyone asks, no i don't smoke.
Over the years managed to drop my weight down to 270 or so - much more then it should be but for me a major accomplishment. Unfortunately in Aug 06 after what was thought of as a heart related event, i ended up being treated for the thyroid issues - that eventually lead to most of my thyroid being removed around May of 08. (I had had about 23 nodules on my thyroid - was told they took out enough material about the size of a softball - and i lost a couple of inches in my neck size.)
As i have hinted around - i have had a litany of health issues the past few years and just wonder if this is all related in some fashion. I know i need to work on losing the weight, and am trying to walk when the fatigue isn't bad enough to allow me to do that.
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Apnea is definately adding to these problems. When you sleep at night you STOP BREATHING! In essence you are slowly suffocating. Your heart, brain, and body are being rationed on what little o2 you are getting. That topped with COPD is making your heart work overtime. Your heart will slowly weaken, enlarge, and eventually stop.
Having the time off and qualifying for President Obama's help in paying Cobra - i ended up getting a lot of things checked including my sleep apnea. I met with a physcians assistant who mastered Scare The Crap out of Your Patient 101 by informing me i was a candidate for a perminent tracheotomy - as well as mentioning the CPAP, Oral Appliance and even surgery,.
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These are your options. A trach is the only 100% way to fix apnea. Period! there are other surguries, but unfortuanately the effects vary. I personally have done several before and after studies on oral appliances. Out of all only one was affective in significantly reducing apnea in any way by itself. PAP therapy is the best most unobtrusive way to fix apnea. I have seen some really good results when 2-3 of these therapies have been used together.
The tough love of it Michael is that if you don't do something about this it is only going to get worse. COPD alone is going to guarantee that. PAP therapy will help you. No it's not a miracle cure, but it will help. Quit being a baby and let them titrate you. At the very least read this post! TWICE! If you have already read it read it AGAIN!
http://www.sleepguide.com/forum/topics/a-death-from-sleep-apnea
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Permalink Reply by Jeffrey Donaldson on
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Hi Michael. I just came across this post and hopefully I can help you out. I sounds to me like you have some form of claustrophobia being triggered by having the mask on and the sense of the pressure. My wife who also is on C-Pap had a similar, but less intense reaction. She did eventually adjust and is doing fine now, but let me make a couple of suggestions.
First of all, I don't think that a psychiatrist would be helpful, or even necessary. I know that the sleep study is a little invasive. Try to explain your feelings to your sleep doctor and hopefully he/she will set you up with a sleep tech who would be your choice male/female and sentitive to your feelings about it.
Having a mask strapped to your face is a little disconcerting and would make someone feel claustrophobic if they are sensitive to it. Ask for some nasil pillows. They have a much less feeling of being restricted. Also ask that they try ramping you up from very low pressure over a long period of time. Make sure to tell them that you are very sensitive to pressure changes and they need to do it in very small increments. That is the one thing about my sleep study that I noticed and kind of bothered me. When I got my machine, I was happy to see that it starts low and slowly adjusts to my needs overnight very gently.
Talk to your doctor about all of these things. Make sure that he/she is willing to meet your needs. If not, find another one and don't give up until you are satified with what they will be willing to do for you.
Good luck.
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Permalink Reply by D. W. Conn on
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Cpap or Bipap is not for everyone. Some people just can not seem to tolerate it.
In my opinion speak to your Sleep Physician or PCP about trying an auto-titration unit at home. Using this for a few months may help when in the sleep lab for formal titration.
Now as for your perception of being wake during your sleep study. I have encountered many patients who complained they never slept. Two things may have been going on. 1st Sleep Phase perception disorder or 2nd due to apnea events and multiple arousals you perceived the brief awakenings more than the actual sleep.
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Permalink Reply by Michael Sopp on
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Thank you for these last two posts.
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Permalink Reply by Pam McReynolds on
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They have a new mask out now for people with claustrophobia. You might want to check it out. It is the Total Face Mask by Respironics. My sister was having issues with the other masks and claustrophobia and it has worked for her. I also like what the others had to say on this discussion.
You have done good to keep trying. I've been fighting with my machine for about a year now. I am now on BiPap rather than CPAP. What kind of apnea do you have? My apnea is about 85% Central and 15% Obstructive. For whatever reason, central or mixed apnea usually works better with BiPap.
Hang in there and keep your doctor informed of your progress. Mine is being very helpful in getting me where I need to be, even to the point of adjusting the pressure to make it more manageable.
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