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05-05-2010, 02:02 PM | #1 | ||
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in one night. My sleep onset time is 30 seconds. I fall asleep everywhere, even while on the toilet and even standing in front of the refrigerator. I am on oxygen which has helped the most. Bipap didn't work well. I haven't been rechecked since my two diagnosis a year apart 2005/2006. Quite frankly I am really scared. It was after I received the diagnosis and they told me I shouldn't expect to live past six months that I began staying up as late as I could because I was afraid to fall asleep. I sleep on the couch because when I sleep in the bedroom no one checks on me and I can sleep for days on end and my husband just lets me stay there. I do not have a supportive home life. I wasn't diagnosed for five years even though I went to doctor to doctor complaining of EXTREME fatigue and falling asleep at weird times. They just kept calling it empty nest syndome. I knew better, but never thought of central sleep apnea. I also do not make ennough cortisol or ACTH, the pituitary hormone. I also have an extreme immune deficiency. Which came first? Who knows. To be ill with four illnesses and having to see all those specialties as well as any labs and MRI/EKG, etc. etc. I do not have enough time or strength to see all the doctors that I need to see. You know the ones. That will see you a few appointments because they don't believe you have what you say you have and they are going to prove you are crazy. but the labs come back confirming as they studder while sending you packing because they don't have a clue.My last neurology appt didn't even last one whole visit as he was screaming at me that I should have never been referred to him and that it was irresponsible for the other doctor to send me and was absurd that I even would come because he didn't have the expertise in Central Sleep Apnea. I gathered from his yelling at the top of his lungs that he wasn't about to learn about it either. In the past three years 90% of my doctor appointment have been first visits where the doctor refused to take me as a patient. So I am very low on doctors at the present time. I have been on IV infusions monthly for the immunity problems.
Regarding my sleep apnea, the sleep doctor explained it like this. "Out of a 60 minute hour, I am not breathing 40 of those minutes." Its no wonder I can't stay awake. Presently I take stimulants to wake me up, but the dose is large and it is barely getting the job done. I maybe get what I call a window of about two hours per day of alertness, but not sustaining alertness. It only lasts for as long as I am awake. Tomorrow I start over. I don't think I have that MG, though I don't know whaT IT is. Perfectly Peg |
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01-15-2011, 08:51 AM | #2 | ||
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My doc suspects MG. Positive clinical assessment, positive EMG, positive symptoms. Symptoms started the same time as my sleeping disorder. Went to a sleep doc and she said my sleep problems were neurological.
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06-09-2011, 07:16 PM | #3 | ||
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01-19-2011, 09:59 AM | #4 | ||
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I started a personality change at 15 and found myself wandering the town looking for energy. I started work went through college and struggled the whole way.......I found myself constantly exhausted and not clear at all so school was enormously hard to be a part of. I went to mental health a fews years back took some pills and got even worse and finally collapsed.
My last job my legs burned, lost control of my physical attributes (like a 95 year old man) and just got worse when put on anxiety pills. I collapsed finally and a doctor recommended I go get a sleep test. I found out that I have for the most part central apnea and it has devestated my life. The more and more I failed the more likely I was to lie about who I was and everything else because a sense of feeling like a looser. I could not handle confrontation because not clear to what was going on and just got worse and worse with exhaustion................... I got the machine and excercise seem to be turning around and now going to counselor; however, I have lost everything that was important to me. My central apnea or sleep pattern was severe no rem sleep in either study. i am now going back to school at 55 and trying to save my marriage at the same time, I need people to talk to that might have felt the same way or can understand me a little. My physical problems have gone away including difficulty with reading, pain in legs, lack of control ; however, the exhaustion is still somewhat there............dcrowle12000@hotmail.com |
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04-24-2011, 10:56 AM | #5 | ||
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Advocate Lutheran General Hospital, Park Hill Iliinois Ask for a copy of hid presention Fatigue, Sleep and MG Good Luck |
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06-02-2011, 01:19 AM | #6 | |||
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Legendary
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litehouz, Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Please keep us up to date. Check out the following for some assistance from the gang: http://neurotalk.psychcentral.com/forum89.html Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. Darlene
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