Anyone been involved in a sleep study

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Lovely Laura

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Hello Everyone,

I am currently involved in a journey looking for an explanation or diagnoses to explain the numerous symptoms I have had since March of this year. I believe less and less that it is ALS but there are so many of you that have been through similar journeys I wondered if you may be able to offer me some insight. These days my worse symptom is not being able to sleep properly at night. I have trouble falling asleep and staying asleep. When I awake it feels as if I had just closed my eyes and I dream the entire time. Needless to say I never feel rested in the morning and have extreme daytime sleepiness and fatigue. My doctor suggested that I go tot a sleep clinic where they will monitor my brain waves through EEG during the night. Have anyone of you been involved in this kind of study and did it help in determining your diagnosis? If so what kind of findings where discovered. Thank you so much for your input ahead of time. :D
 

Beach Bum

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Hi Miss Lovely,
My Neuro,ordered a sleep study for me appox two months ago.He had diagnosed me with ALS about four months ago,the study came back normal.Thing is,if I were you have it done,we all need a good nights sleep and they may be able to help you.
Good luck--Ken
 

Al

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A sleep study will tell if your O2 levels drop or CO2 is high both which can cause fatigue. Definately worth doing.

AL.
 

laurel

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Hi Laura, My husband had a sleep study several years ago. He spent the night at the local University Hospital sleep lab. all fitted out with equipment to monitor him for apnea. He is/was a snorer and always felt tired. He was diagnosed with sleep apnea that was fairly bad, and has used a CPAP machine since. Maybe two years after the sleep study, he was diagnosed with CIDP-MADSAM (a motor variant). Still has lots of fatigue--trouble getting to sleep-- even with the CPAP, but that seems part and parcel of CIDP. He didn't mind the whole sleep study as he found it interesting.
Laurel
 

Marjorie R. Wilcox

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A sleep study indicates whether or not you are breathing properly during sleep. You may not breathe fast enough, deep enough, or may skip breaths once in a while or often. It will determine the need for a cpap or bipap machine. Without recuperative sleep, we don't have strength and energy to have a fullfilled day... and feel like we haven't slept. It was found that my husband stopped breathing about 500 times a night, so has had a machine for years, going from the Cpap (only forces air in on intake breaths) to a Bipap (forces air in and out). The machine gives you about 20 minutes to fall asleep and then changes speeds which are set for the individial. These settings will have to be changed form time to time as the problem progresses. The danger is that your brain might not be initiating you to breathe without your being awake to perform the breaths yourself. You could "nod off" while driving or in the middle of your sentences. I have seen it! The test is simple and painless.... you just go into a quiet room with a bed, get connected to apparatus, and go to sleep for the night.
 

sadiemae

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My Husband is going in for a sleep study next week. He has BiPap, but does not use it. Here's hoping that the sleep study will convince him to start using it, or will reassure me that he does not need to use it yet. Also, we will be able to make sure the settings are right on the BiPap.
 

alex scared

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hi . . This is a topic i can relate to . . Had problems with sleep breathin so was refered for a sleep study . . Basically it was explained to me that sleep quality is all about how well you breathe . . What a sleep study will do is monitor the levels of c02 and oxygen . . Too much of either can result in sleep apnea which you probably know is a stoppage in breathin during sleep . . There are 2 kinds of sleep apnea . . The first is obstructive sleep apnea . . This is when the muscles around the back of the throat and mouth relax to such an extent that a blockage of the airway is the result . This is usually signified by snoring and frequent sleep disturbances . . The second is central sleep apnea . . A much rare type (the one i got ! )this is when the the breathing controll centre of the brain fails send the signal to inhale . . Meaning that the patient literally forgets to breath . . Usually this results in the patient waking with a thuddin heart every time they drift off .. Literally never getting to deep sleep . . It also presents the risk of the gas exchange becoming imbalanced .ie either too much or not enough oxygen . . A sleep study will help determine what is happening by measuring heart rate / Oxygen /c02 levels and what part of the sleep is worst hit. . . Once they figure it out then usually a c pap or bi pap is prescribd . . I hope this helps. . . Good luck and god bless . . Alex
 

senior60

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I went for a sleep study and before u go you are to get off all medications for 48 to 60 hours.The meds i had been on were sleeping pills.
Well once i had given my body a 3 day cleansing period i could sleep normally.Sleeping pills are only good for periodic use otherwise they become addictive and you can't sleep without them.
 

Pepper

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I have posted here before. I change to another handle which does not have my surname in it. Seaching my mind for handle, I looked out into the garden and saw my hot pepper plant. Hence Pepper. I love hot peppers, the hotter the better. My husband is getting sleeping problem now. He is awake 1 am to 5 am or later. I used to be able to sleep even when he is awake. He would lay there silently all night. I used to wonder how he is able to do it. Now he watches TV. He has a lot of mucus and often would cough in shouting mode. I asked the hospice nurse to get him some sleeping pills. We tried both, they do not work. He is like wired up, so wide awake, nothing could get him to sleep. He has both bipap machine and oxygen and hates both of them. He loves the nebulizer which is what I use when he starts having problem with mucus - unable to sleep.
 

Lovely Laura

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Hello Ken, Hopefully they will be able to tell me something...if not that is one more thing off the list and I will continue my search. I was in to see an eye doctor this past Friday and she discovered I do not need glasses but that the pressure in my eye was high and my optic nerve is larger than normal. I have to go back in Jan to have a drop test done..someone will have to drive for me as it makes your vision very blurry there after. She wants to have a better look. I am sorry to hear of your DX...what was the first sign you noticed as you began to lose your voice? Again, I appreciate you taking the time to answer my questions :) all the best, Laura
 
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Lovely Laura

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Hi Laura, My husband had a sleep study several years ago. He spent the night at the local University Hospital sleep lab. all fitted out with equipment to monitor him for apnea. He is/was a snorer and always felt tired. He was diagnosed with sleep apnea that was fairly bad, and has used a CPAP machine since. Maybe two years after the sleep study, he was diagnosed with CIDP-MADSAM (a motor variant). Still has lots of fatigue--trouble getting to sleep-- even with the CPAP, but that seems part and parcel of CIDP. He didn't mind the whole sleep study as he found it interesting.
Laurel
Thanks Al for the explanation :)

Laurel, did you ever hear your husband gasp for air? I don't snore very often but I do actually catch myself making unusual gasping sounds every now and then..I believe it will be interesting as well. My sleeping habits changed so suddenly..as did many things but I miss it so much! Hope the two of you are managing as best as could be expected :)
 

Lovely Laura

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My Husband is going in for a sleep study next week. He has BiPap, but does not use it. Here's hoping that the sleep study will convince him to start using it, or will reassure me that he does not need to use it yet. Also, we will be able to make sure the settings are right on the BiPap.
Hey Sadiemae,

Hope he makes out well at the study. All my best to both of you :)
 

Lovely Laura

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Messages
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hi . . This is a topic i can relate to . . Had problems with sleep breathin so was refered for a sleep study . . Basically it was explained to me that sleep quality is all about how well you breathe . . What a sleep study will do is monitor the levels of c02 and oxygen . . Too much of either can result in sleep apnea which you probably know is a stoppage in breathin during sleep . . There are 2 kinds of sleep apnea . . The first is obstructive sleep apnea . . This is when the muscles around the back of the throat and mouth relax to such an extent that a blockage of the airway is the result . This is usually signified by snoring and frequent sleep disturbances . . The second is central sleep apnea . . A much rare type (the one i got ! )this is when the the breathing controll centre of the brain fails send the signal to inhale . . Meaning that the patient literally forgets to breath . . Usually this results in the patient waking with a thuddin heart every time they drift off .. Literally never getting to deep sleep . . It also presents the risk of the gas exchange becoming imbalanced .ie either too much or not enough oxygen . . A sleep study will help determine what is happening by measuring heart rate / Oxygen /c02 levels and what part of the sleep is worst hit. . . Once they figure it out then usually a c pap or bi pap is prescribd . . I hope this helps. . . Good luck and god bless . . Alex
Hello Alex,
Hope you are finding answers along the way..I appreciate your input. I wake up numerous times within the night and have felt like I can't move on occassion or one of my limbs (arm or leg) would be numb even though I am completely alert. For example, this morning I awoke and my right arm was numb. I could move it but couldn't really feel it. I had trouble turning on my lamp. It didn't last long but is still concerning. Have you ever had anything similar hapen to you? Hope you have found some good people to help you :)
 

Lovely Laura

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I went for a sleep study and before u go you are to get off all medications for 48 to 60 hours.The meds i had been on were sleeping pills.
Well once i had given my body a 3 day cleansing period i could sleep normally.Sleeping pills are only good for periodic use otherwise they become addictive and you can't sleep without them.
Thanks for the information. I am not currently on any medication, I was on Steroids in the begining, antiseizure meds and a couple of months ago my doctor had me try Lyrica but I wasn't comfortable taking something that they weren't sure how it worked when I didn't even yet know what was wrong with me. Nor did I notice a significant change while I was on it. My doctor did mention sleeping pills to me but again I told her I would like to know what my problem is before I start taking drugs to mask the symptoms. The only thing I have taking over the last couple months is the occassional ativan and that is only when I really felt I needed it because my symptoms were worse than normal. I understand that ativan is highly addictive as well so I limit the amount I take. Take care :)
 

Lovely Laura

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I have posted here before. I change to another handle which does not have my surname in it. Seaching my mind for handle, I looked out into the garden and saw my hot pepper plant. Hence Pepper. I love hot peppers, the hotter the better. My husband is getting sleeping problem now. He is awake 1 am to 5 am or later. I used to be able to sleep even when he is awake. He would lay there silently all night. I used to wonder how he is able to do it. Now he watches TV. He has a lot of mucus and often would cough in shouting mode. I asked the hospice nurse to get him some sleeping pills. We tried both, they do not work. He is like wired up, so wide awake, nothing could get him to sleep. He has both bipap machine and oxygen and hates both of them. He loves the nebulizer which is what I use when he starts having problem with mucus - unable to sleep.
Hopefully you are able to find something that helps him sleep Pepper. I know for me not sleeping has affected me in many ways. It can make me irritable, cause a lack of concentration among other negative things. My best to you both :)
 
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