Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 10-29-2010, 02:29 AM #1
Annie59 Annie59 is offline
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Annie59 Annie59 is offline
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Frown Heat on and miserable

Oh good grief!! It is was colder lastnite and during the day for first time and down into 20s tonight so I felt I should try one heat source. I have radiant heat as with my Sjogrens I have long since past the point were I can have forced air heat as it dries the air so severely I get horrible worse in all the sjogrens symptoms. And this means pain in my eyes and nose and headaches and aching in my lungs with waking during the nite cause lungs are dry and dont work as well on top of the not normal they are from myasthenia.

I just turned on the on in the bathroom. It wasnt so bad till I opened the door to that room. Then even for me on the couch 2 rooms away I started to feel it in my face. It was like having dry heated air blown up into my sinus' and mouth. Even my head began to ache inside which surprised even me as that is on the extreme end of my dry air symptoms. I cranked up 2 of heavy duty Air O Swiss humidifiers. But wow you wouldnt belive how much it takes to counteract that much drying of the air.

The cold of winter makes the MG better. My muscles love it I learned the first winter. But the dry, the heat of heat sources is awful. I think something is fishy. Some heat sources bother me more than others. Maybe I should call a heating expert. I had forgotten how miserable this is.

Annie59
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Old 10-29-2010, 06:38 AM #2
TRESA TRESA is offline
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Quote:
Originally Posted by Annie59 View Post
Oh good grief!! It is was colder lastnite and during the day for first time and down into 20s tonight so I felt I should try one heat source. I have radiant heat as with my Sjogrens I have long since past the point were I can have forced air heat as it dries the air so severely I get horrible worse in all the sjogrens symptoms. And this means pain in my eyes and nose and headaches and aching in my lungs with waking during the nite cause lungs are dry and dont work as well on top of the not normal they are from myasthenia.

I just turned on the on in the bathroom. It wasnt so bad till I opened the door to that room. Then even for me on the couch 2 rooms away I started to feel it in my face. It was like having dry heated air blown up into my sinus' and mouth. Even my head began to ache inside which surprised even me as that is on the extreme end of my dry air symptoms. I cranked up 2 of heavy duty Air O Swiss humidifiers. But wow you wouldnt belive how much it takes to counteract that much drying of the air.

The cold of winter makes the MG better. My muscles love it I learned the first winter. But the dry, the heat of heat sources is awful. I think something is fishy. Some heat sources bother me more than others. Maybe I should call a heating expert. I had forgotten how miserable this is.

Annie59
Morning Annie-I also get the extreme dryness-total dehydration. When I was put on mestinon it greatly helped me with all those dryness issues-sinuses,mouth,all over dehydration. Have you ever been on mestinon-I sing its praises!
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Old 10-29-2010, 12:33 PM #3
Annie59 Annie59 is offline
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Oh yes Tresa mestinon is a true miracle drug for the sjogrens I have. I do take it but have had tolerance problems so am stuck taking less than I used to. I have been trying to increase and am up higher in the last 10 days so I am seeing some minor help. I have chemical sensitivity and my acupuncture doc is treating it. Last time he got something half right and half wrong it seems as while I am able to take more of the drug I am not getting as strong a reaction in that area. I am hoping when I see him again he can fix that without messing with the good. This is not normal for what he does for me. He is ususally very reliable.

Annie59
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Old 10-29-2010, 02:44 PM #4
craftyRCC craftyRCC is offline
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Annie59,

Hope you figure out the heat situation!
Have you tried a cool mist vaporizer? The droplets they release are almost microscopic and they don't make the room humid.

Rachel
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