Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 I had my second of two sleep studies on Thursday. It went pretty poorly. First I was having trouble getting to sleep. I tried the nose only mask first. I had a lot of trouble getting used to it. When I finally went to sleep I was losing too much air through my mouth so we put on the full face mask (which I hated). I felt like it was blocking my nose and making it harder to breathe. Also, I don't like being alone with the door closed so the guy opened it a crack. I thought that would make me feel better. Another thing...I felt like I wouldn't be heard if I called for help (I really couldn't talk with the mask on). We did a test and he could hear me fine through the intercom but I was getting more and more nervous...heart racing (panic attack which I generally don't have). I felt trapped...I couldn't move my head with all the wires and mask on. I asked if could stay with me but he said that might effect my sleep. After awhile I called to take it off. We took a break and he went and got in the next room. I rested a while and then he asked if I wanted to try the full face mask again. I didn't want the whole thing to be a big waste so I said yes. This time I asked to try a bigger size mask. The guy also said could stay (since we weren't getting anywhere anyway). I did a little better and actually slept a bit but still hated the mask. At least I felt calmer with right there next to me. So that's all. I hated the whole experience. The first night they told me that maybe half way through they would try the bi-pap but they let me sleep all night so I actually thought that was it. About two weeks later they called to schedule the second test...blah. I wasn't expecting to have to go back. I did like that it is in the same building work in at the hospital...I only had to go upstairs after work. Now I just have to wait for results/recommendations. thinks I could get used to the mask. I don't know. Any thoughts? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Hi, I remember my first sleep study too! First off, I TOLD them my husband HAS to be with me throughout the study (I don't give them a choice, LOL). They brought in a fold-a-way cot so he slept at the foot of my bed, just so they knew the results would be unaffected by his sleeping behaviour. They gave me a full face mask too. I also felt a tad trapped, but I took a bell into bed with me. I placed it near my strong hand so I could ring it if I needed help. Being a fast dozer, I fell asleep fine long before the pressure got too high. My results concluded a CPAP becuz in order to stop me from apnea-ing the exhale/inhale pressures were identical ... therefore why buy a more expensive machine? I started out with a hypo-allergetic nasal mask, but my skin still reacted badly so I switched to Nasal-Aire's small nasal tubes. It took me about a month or so to get used to it. My mouth still dropped open so I now put on a chin support brace to keep my jaw from opening. I sometimes drool (yummy waking up eh? Mornin! Sweetheart...wanna kiss me? NOT! LOL!) Oh well, that's what tissue is for. All in all, I now sleep soundly and wake well rested. I hate the face mask btw....just my opinion. Angie SMA II 41yrs old On 2006.02.19 19:56, Those Two wrote: > I had my second of two sleep studies on Thursday. It went pretty poorly. > First I was having trouble getting to sleep. I tried the nose only mask > first. I had a lot of trouble getting used to it. When I finally went to > sleep I was losing too much air through my mouth so we put on the full > face mask (which I hated). I felt like it was blocking my nose and > making it harder to breathe. Also, I don't like being alone with the > door closed so the guy opened it a crack. I thought that would make me > feel better. Another thing...I felt like I wouldn't be heard if I called > for help (I really couldn't talk with the mask on). We did a test and he > could hear me fine through the intercom but I was getting more and more > nervous...heart racing (panic attack which I generally don't have). I > felt trapped...I couldn't move my head with all the wires and mask on. I > asked if could stay with me but he said that might effect my sleep. > After awhile I called to take it off. We took a break and he went and > got in the next room. I rested a while and then he asked if I > wanted to try the full face mask again. I didn't want the whole thing to > be a big waste so I said yes. This time I asked to try a bigger size > mask. The guy also said could stay (since we weren't getting > anywhere anyway). I did a little better and actually slept a bit but > still hated the mask. At least I felt calmer with right there next > to me. > > So that's all. I hated the whole experience. The first night they told > me that maybe half way through they would try the bi-pap but they let me > sleep all night so I actually thought that was it. About two weeks later > they called to schedule the second test...blah. I wasn't expecting to > have to go back. I did like that it is in the same building work in at > the hospital...I only had to go upstairs after work. Now I just have to > wait for results/recommendations. thinks I could get used to the > mask. I don't know. > > Any thoughts? > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 How did you know you needed a sleep study. Was it not being able to sleep or what what was the reason you had this test. Thanks Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I underwent a sleep study when I was 34 yrs old. It was done at a Rehab Hospital in Dallas. I was experiencing severe headaches when I would wake up in the mornings. My husband stayed with me throughout the whole process. I never could get used to ANY of the masks, though. They sent me home with a BiPap, which I never used. Thirteen years later, I'm now on a ventilator 24/7. I can breathe up to 1/2 hour without totally exhausting myself and have my CO2 levels get too high. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Well for me, it was because I found myself drifting off or nodding off midday for no apparent reason. I have always fallen asleep easily and could sleep 8-10 hrs if left alone. It was when I began screaming myself awake and scaring my husband awake too that my GP scheduled a sleep study for me. It also became a solution to my cold feet in the mornings too. My feet would still be cold when I'd have barely 6-7hrs of sleep, but on my CPAP my feeties would always be warm by morning. Angie On 2006.02.19 22:50, Terry Willoughby wrote: > How did you know you needed a sleep study. Was it not being able to > sleep or what what was the reason you had this test. > > Thanks > > Terry > > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 ohhh sorry it went poorly. I do hope you are feeling better now. I just wanted to say I thought it odd that they would not allow to be there since he would normally be there when you are sleeping! Seems it would only help the situation, but I'm not a doctor. I'm also wondering what made you decide to have this study done? Are you ok??? Those Two <those2@...> wrote: I had my second of two sleep studies on Thursday. It went pretty poorly. First I was having trouble getting to sleep. I tried the nose only mask first. I had a lot of trouble getting used to it. When I finally went to sleep I was losing too much air through my mouth so we put on the full face mask (which I hated). I felt like it was blocking my nose and making it harder to breathe. Also, I don't like being alone with the door closed so the guy opened it a crack. I thought that would make me feel better. Another thing...I felt like I wouldn't be heard if I called for help (I really couldn't talk with the mask on). We did a test and he could hear me fine through the intercom but I was getting more and more nervous...heart racing (panic attack which I generally don't have). I felt trapped...I couldn't move my head with all the wires and mask on. I asked if could stay with me but he said that might effect my sleep. After awhile I called to take it off. We took a break and he went and got in the next room. I rested a while and then he asked if I wanted to try the full face mask again. I didn't want the whole thing to be a big waste so I said yes. This time I asked to try a bigger size mask. The guy also said could stay (since we weren't getting anywhere anyway). I did a little better and actually slept a bit but still hated the mask. At least I felt calmer with right there next to me. So that's all. I hated the whole experience. The first night they told me that maybe half way through they would try the bi-pap but they let me sleep all night so I actually thought that was it. About two weeks later they called to schedule the second test...blah. I wasn't expecting to have to go back. I did like that it is in the same building work in at the hospital...I only had to go upstairs after work. Now I just have to wait for results/recommendations. thinks I could get used to the mask. I don't know. Any thoughts? A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 i couldn't tolerate the mask but did ok with " nasal pillows " . i had to prop my chin shut and be on allergy meds. the drooling sucks. i use an old school negative pressure, custom fit cuirass at night. alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I share some of the very same concerns and feelings you do about the face-masks. In answer to someone elses question, I knew I should go in for a sleep study once I noticed I was waking up gasping for air. I would realize I wasn't breathing and eventually wake up gasping and with my heart pounding. But it actually took me a couple years to get around to bringing it up to my doctor. My actual study went pretty smoothly. My wife slept outside the room on a couch and I wasn't concerned about anyone hearing me if I needed up. I can't move much when I'm laying down, but I can still pull the mask off and yell if I need help. I was diagnosed with moderate sleep apnea, which means it's concerning enough to result in a C-pap prescription. The doctor thought that my apnea is hereditary and not yet a function of my SMA. I've got the machine and nose fitting at home but don't use it much. The nose fitting was a nice improvement over the face mask, but it still springs a leak when I move my head and then it's difficult for me to readjust. There's been a couple nights where I've worn it through the entire night and wow, does it make a positive difference in my energy. I know I just need to keep working at it until I'm used to it. Your feelings of a panic attack are also familar to me. Some nights I have woken up and felt like I was suffocating and it takes me a minute to fully wake up and realize that I'm OK. This happens to me with or without the C-pap, but it just so happens that with the C- pap I also feel like I'm unable to call for help. It's a big adjustment, but I'm a believer that it's worth it in the end. Heh, maybe I'll make a better effort myself to use it starting tonight. > > I had my second of two sleep studies on Thursday. It went pretty poorly. > First I was having trouble getting to sleep. I tried the nose only mask > first. I had a lot of trouble getting used to it. When I finally went to > sleep I was losing too much air through my mouth so we put on the full > face mask (which I hated). I felt like it was blocking my nose and > making it harder to breathe. Also, I don't like being alone with the > door closed so the guy opened it a crack. I thought that would make me > feel better. Another thing...I felt like I wouldn't be heard if I called > for help (I really couldn't talk with the mask on). We did a test and he > could hear me fine through the intercom but I was getting more and more > nervous...heart racing (panic attack which I generally don't have). I > felt trapped...I couldn't move my head with all the wires and mask on. I > asked if could stay with me but he said that might effect my sleep. > After awhile I called to take it off. We took a break and he went and > got in the next room. I rested a while and then he asked if I > wanted to try the full face mask again. I didn't want the whole thing to > be a big waste so I said yes. This time I asked to try a bigger size > mask. The guy also said could stay (since we weren't getting > anywhere anyway). I did a little better and actually slept a bit but > still hated the mask. At least I felt calmer with right there next > to me. > > So that's all. I hated the whole experience. The first night they told > me that maybe half way through they would try the bi-pap but they let me > sleep all night so I actually thought that was it. About two weeks later > they called to schedule the second test...blah. I wasn't expecting to > have to go back. I did like that it is in the same building work in at > the hospital...I only had to go upstairs after work. Now I just have to > wait for results/recommendations. thinks I could get used to the > mask. I don't know. > > Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I guess I'll wait for the results. We tried the nose mask and chin support but I was still losing too much air. Thanks for the reply. L Angie wrote: > Hi, I remember my first sleep study too! > > First off, I TOLD them my husband HAS to be with me throughout the > study (I > don't give them a choice, LOL). They brought in a fold-a-way cot so he > slept > at the foot of my bed, just so they knew the results would be > unaffected by > his sleeping behaviour. They gave me a full face mask too. I also felt > a tad > trapped, but I took a bell into bed with me. I placed it near my > strong hand > so I could ring it if I needed help. Being a fast dozer, I fell asleep > fine > long before the pressure got too high. > > My results concluded a CPAP becuz in order to stop me from apnea-ing the > exhale/inhale pressures were identical ... therefore why buy a more > expensive > machine? I started out with a hypo-allergetic nasal mask, but my skin > still > reacted badly so I switched to Nasal-Aire's small nasal tubes. > > It took me about a month or so to get used to it. My mouth still > dropped open > so I now put on a chin support brace to keep my jaw from opening. I > sometimes > drool (yummy waking up eh? Mornin! Sweetheart...wanna kiss me? NOT! > LOL!) Oh > well, that's what tissue is for. > > All in all, I now sleep soundly and wake well rested. > > I hate the face mask btw....just my opinion. > > Angie > SMA II > 41yrs old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 For a long time I've had: restless sleep, nightmares, waking up frequently, a pursing blow type behavior....all which I could live with (or felt ok with ignoring). However, back in Nov. or Dec. I had four very bad nights in a row (all of the above except worse) and hardly slept a wink while still getting up everyday for work. I was completely exhausted. By the end of that forth day I thought I'd better get checked (brilliant, huh?). It was tricky getting in to see a very popular pulmonologist so I had to wait awhile (my old pulm. was nowhere to be found...retired over the years?? Don't know.)...then the holidays were here so I put off the PFT's and sleep study. And here we are. :-/ L Terry Willoughby wrote: > How did you know you needed a sleep study. Was it not being able to > sleep or what what was the reason you had this test. > > Thanks > > Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I think he was just trying to follow the rules which I understand. Of course, he did eventually let stay and that's when I did the best (duh). Please see my last post on why I needed the study. Thank you for your concern! L Joy wrote: > ohhh sorry it went poorly. I do hope you are feeling better now. I > just wanted to say I thought it odd that they would not allow to > be there since he would normally be there when you are sleeping! > Seems it would only help the situation, but I'm not a doctor. > > I'm also wondering what made you decide to have this study done? Are > you ok??? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I think the night would have went much better if could have stayed with me from the beginning...live and learn (in case I ever consent to another s.s....which I doubt). If there is ever a next time, it's either both of us or none. I should have ran it by y'all first! Thank you for sharing your experience. L VickiLJurney@... wrote: > I underwent a sleep study when I was 34 yrs old. It was done at a Rehab > Hospital in Dallas. I was experiencing severe headaches when I would > wake up in the > mornings. My husband stayed with me throughout the whole process. I never > could get used to ANY of the masks, though. They sent me home with a > BiPap, which > I never used. Thirteen years later, I'm now on a ventilator 24/7. I can > breathe up to 1/2 hour without totally exhausting myself and have my > CO2 levels get > too high. > > Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hmm...thank you. I'll keep this in mind. L Alana wrote: > i couldn't tolerate the mask but did ok with " nasal pillows " . i had to > prop my chin shut and be on allergy meds. the drooling sucks. i use > an old school negative pressure, custom fit cuirass at night. > > alana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Thank you very much. I would probably feel better about it if I could remove the mask myself. I know is always close by but it's still freaky...I still have in the back of my head 'what if something happens to him...then I really couldn't get out.' Tonight a good friend said she'd be my backup (I could call her and she'd come here). If I do end up needing it, I will try it with an open mind. thinks I would get used to it and he always knows best. :-) L wrote: > I share some of the very same concerns and feelings you do about the > face-masks. In answer to someone elses question, I knew I should go > in for a sleep study once I noticed I was waking up gasping for > air. I would realize I wasn't breathing and eventually wake up > gasping and with my heart pounding. But it actually took me a > couple years to get around to bringing it up to my doctor. > > My actual study went pretty smoothly. My wife slept outside the > room on a couch and I wasn't concerned about anyone hearing me if I > needed up. I can't move much when I'm laying down, but I can still > pull the mask off and yell if I need help. > > I was diagnosed with moderate sleep apnea, which means it's > concerning enough to result in a C-pap prescription. The doctor > thought that my apnea is hereditary and not yet a function of my > SMA. > > I've got the machine and nose fitting at home but don't use it > much. The nose fitting was a nice improvement over the face mask, > but it still springs a leak when I move my head and then it's > difficult for me to readjust. There's been a couple nights where > I've worn it through the entire night and wow, does it make a > positive difference in my energy. I know I just need to keep > working at it until I'm used to it. > > Your feelings of a panic attack are also familar to me. Some nights > I have woken up and felt like I was suffocating and it takes me a > minute to fully wake up and realize that I'm OK. This happens to me > with or without the C-pap, but it just so happens that with the C- > pap I also feel like I'm unable to call for help. > > It's a big adjustment, but I'm a believer that it's worth it in the > end. Heh, maybe I'll make a better effort myself to use it starting > tonight. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I suppose duct tape would be too much eh? My mother thought it would help me stop drooling (joking of course). hehehe Yes a chin support only works if your lips can stay shut under the air pressure. I drool only when I dream ... I guess even in dreams I yak too much LOL. Angie On 2006.02.20 21:00, Those Two wrote: > I guess I'll wait for the results. We tried the nose mask and chin > support but I was still losing too much air. Thanks for the reply. > > L > > Angie wrote: > > Hi, I remember my first sleep study too! > > > > First off, I TOLD them my husband HAS to be with me throughout the > > study (I > > don't give them a choice, LOL). They brought in a fold-a-way cot so he > > slept > > at the foot of my bed, just so they knew the results would be > > unaffected by > > his sleeping behaviour. They gave me a full face mask too. I also felt > > a tad > > trapped, but I took a bell into bed with me. I placed it near my > > strong hand > > so I could ring it if I needed help. Being a fast dozer, I fell asleep > > fine > > long before the pressure got too high. > > > > My results concluded a CPAP becuz in order to stop me from apnea-ing the > > exhale/inhale pressures were identical ... therefore why buy a more > > expensive > > machine? I started out with a hypo-allergetic nasal mask, but my skin > > still > > reacted badly so I switched to Nasal-Aire's small nasal tubes. > > > > It took me about a month or so to get used to it. My mouth still > > dropped open > > so I now put on a chin support brace to keep my jaw from opening. I > > sometimes > > drool (yummy waking up eh? Mornin! Sweetheart...wanna kiss me? NOT! > > LOL!) Oh > > well, that's what tissue is for. > > > > All in all, I now sleep soundly and wake well rested. > > > > I hate the face mask btw....just my opinion. > > > > Angie > > SMA II > > 41yrs old > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Heheh...I jokingly thought of that too. It takes a lot to keep my mouth shut! Just ask . L Angie wrote: > I suppose duct tape would be too much eh? > > Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Sounds like clausterphobia. Those Two <those2@...> wrote: I had my second of two sleep studies on Thursday. It went pretty poorly. First I was having trouble getting to sleep. I tried the nose only mask first. I had a lot of trouble getting used to it. When I finally went to sleep I was losing too much air through my mouth so we put on the full face mask (which I hated). I felt like it was blocking my nose and making it harder to breathe. Also, I don't like being alone with the door closed so the guy opened it a crack. I thought that would make me feel better. Another thing...I felt like I wouldn't be heard if I called for help (I really couldn't talk with the mask on). We did a test and he could hear me fine through the intercom but I was getting more and more nervous...heart racing (panic attack which I generally don't have). I felt trapped...I couldn't move my head with all the wires and mask on. I asked if could stay with me but he said that might effect my sleep. After awhile I called to take it off. We took a break and he went and got in the next room. I rested a while and then he asked if I wanted to try the full face mask again. I didn't want the whole thing to be a big waste so I said yes. This time I asked to try a bigger size mask. The guy also said could stay (since we weren't getting anywhere anyway). I did a little better and actually slept a bit but still hated the mask. At least I felt calmer with right there next to me. So that's all. I hated the whole experience. The first night they told me that maybe half way through they would try the bi-pap but they let me sleep all night so I actually thought that was it. About two weeks later they called to schedule the second test...blah. I wasn't expecting to have to go back. I did like that it is in the same building work in at the hospital...I only had to go upstairs after work. Now I just have to wait for results/recommendations. thinks I could get used to the mask. I don't know. Any thoughts? A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 If I could take the mask off myself or even move a muscle, I think it would have been better. wrote: > Sounds like clausterphobia. > > Those Two <those2@...> wrote: I had my second of two > sleep studies on Thursday. It went pretty poorly. > First I was having trouble getting to sleep. I tried the nose only mask > first. I had a lot of trouble getting used to it. When I finally went to > sleep I was losing too much air through my mouth so we put on the full > face mask (which I hated). I felt like it was blocking my nose and > making it harder to breathe. Also, I don't like being alone with the > door closed so the guy opened it a crack. I thought that would make me > feel better. Another thing...I felt like I wouldn't be heard if I called > for help (I really couldn't talk with the mask on). We did a test and he > could hear me fine through the intercom but I was getting more and more > nervous...heart racing (panic attack which I generally don't have). I > felt trapped...I couldn't move my head with all the wires and mask on. I > asked if could stay with me but he said that might effect my sleep. > After awhile I called to take it off. We took a break and he went and > got in the next room. I rested a while and then he asked if I > wanted to try the full face mask again. I didn't want the whole thing to > be a big waste so I said yes. This time I asked to try a bigger size > mask. The guy also said could stay (since we weren't getting > anywhere anyway). I did a little better and actually slept a bit but > still hated the mask. At least I felt calmer with right there next > to me. > > So that's all. I hated the whole experience. The first night they told > me that maybe half way through they would try the bi-pap but they let me > sleep all night so I actually thought that was it. About two weeks later > they called to schedule the second test...blah. I wasn't expecting to > have to go back. I did like that it is in the same building work in at > the hospital...I only had to go upstairs after work. Now I just have to > wait for results/recommendations. thinks I could get used to the > mask. I don't know. > > Any thoughts? > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 First off don't let a hospital tell you your care giver can't stay with you. [unless your guys snoring so loud it's messing up the test readings,] I tell hospitals all of the time with my guy : " he stays or I leave " and that usually settles the issue. If you say you're uncomfortable, the hospital workers poo-poo & dismiss your needs anyway. You might as well tell them no for whatever latest touture they're doing to you, and leave at that. If you can't talk with a mask on don't use it for a test for even a little while. If I know somethings not going to ever be comfortable I don't humor it. You don't need some device to bound and gag you on top of being disabled from SMA. Medical people hardly ever use the stuff they inflict on us. I hate the whole sleep study torture routine anyway. You never get to sleep for one thing. Then I have to spend hours getting glue out of my hair, tape ripped off of me, cuts in my head from where I layed on electrodes. One idiot put china grease marker xs all over my head that wouldn't come out after 4washes. It's not worth it for me Why do drs make people with sma go through the whole wired up overkill when they can find out about our breathing without half of this crap. Just my opinion. Not dissing anyone elses opinion here. Thanks for letting me have a rant here I had my second of two sleep studies on Thursday. It went pretty poorly. > First I was having trouble getting to sleep. I tried the nose only mask > first. I had a lot of trouble getting used to it. When I finally went to > sleep I was losing too much air through my mouth so we put on the full > face mask (which I hated). I felt like it was blocking my nose and > making it harder to breathe. Also, I don't like being alone with the > door closed so the guy opened it a crack. I thought that would make me > feel better. Another thing...I felt like I wouldn't be heard if I called > for help (I really couldn't talk with the mask on). We did a test and he > could hear me fine through the intercom but I was getting more and more > nervous...heart racing (panic attack which I generally don't have). I > felt trapped...I couldn't move my head with all the wires and mask on. I > asked if could stay with me but he said that might effect my sleep. > After awhile I called to take it off. We took a break and he went and > got in the next room. I rested a while and then he asked if I > wanted to try the full face mask again. I didn't want the whole thing to > be a big waste so I said yes. This time I asked to try a bigger size > mask. The guy also said could stay (since we weren't getting > anywhere anyway). I did a little better and actually slept a bit but > still hated the mask. At least I felt calmer with right there next > to me. > > So that's all. I hated the whole experience. The first night they told > me that maybe half way through they would try the bi-pap but they let me > sleep all night so I actually thought that was it. About two weeks later > they called to schedule the second test...blah. I wasn't expecting to > have to go back. I did like that it is in the same building work in at > the hospital...I only had to go upstairs after work. Now I just have to > wait for results/recommendations. thinks I could get used to the > mask. I don't know. > > Any thoughts? > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: - unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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